Pray For Dylan

Baby Andrew is HERE!!

2012-01-25T22:39:00.001-07:00

We are so excited to welcome our newest addition to the family, Andrew Graham Praskins! He was born on December 29th, weighing in at a healthy 8lbs, 10oz, and was 19 inches long. He is absolutely perfect!! His BIRTHday turned out to be quite an exciting day! I really wanted to try to have a VBAC, which is a vaginal birth after having a c-section. I knew the risks and knew I could very well end up back in surgery for a second c-section, but Erik and I decided it was worth a try! We went in at 8am to get induced due to some insurance technicalities....Oh how I love insurance!! When we got to the hospital, I was dilated at 3cm (I need to be 10 to deliver)....and by 6pm, I made it to a whopping 5cm! Needless to say, I was frustrated. Not only was my body not responding, but little Andrews heart rate kept dropping. Everyone was on edge and Dr. B was ready to do the emergency c-section if needed. He too wanted me to be able to have a VBAC, so he was patient with us and kept encouraging me that I could do it! I was so uncomfortable, tired, and just worn out. I was ready to give up, thinking my body was never going to cooperate. The nurse kept changing my position to keep Andrew's heart rate up. And that is when God said, "its time!". Within a 20 minute period, I went from 5cm-10cm, and Andrew was on his way out!! Once the nurse saw I was at a 10, she ran from the room to get the doc and thats when the fun began. Dr. B was so excited, he ran down the hall and picked up the nurse and swung her around, then ran in the room sand gave me a big hug! He is seriously the coolest doctor ever! Everything happened so quickly. So quickly in fact that nobody had time to get to the hospital! Thankfully, Erik was there, along with my mom and my little sister, Mandy. I was so thankful to have them there to experience the birth with us. After about four pushes, Dr. B told me to look down and I got to see him pull little Andrew out! I immediately started bawling uncontrollably and was overcome with immense joy. It was the most amazing experience I have ever been through! He was absolutely perfect! The rest of the evening was spent with family and friends. Dylan was also able to come and visit his new baby brother. It was really sweet to see Dylan's reaction to the baby. He kept trying to kiss him and just wanted to stare at him and figure out who this new little person was that everyone was excited about. I could not have asked for a better day! Glory to God for blessing us with beautiful and healthy baby boy. Now the REAL fun begins!!

Where does the time go?? TIME FOR AN UPDATE!

2011-10-13T16:06:00.003-07:00

Hello!!! Has it really been 3 months since my last update?! Time is flying by!! Well, things around here are a little busy! I have been working part time at Wells Fargo since May, and between that and taking care of a toddler and growing a little baby....I am pooped! This pregnancy is definitely a little more challenging because there is not a lot of down time. Little Dylan sure keeps me on my toes! But I love it!

We just saw Dr. Graham this past week and Dylan labs were ABSOLUTELY PERFECT! Just like him!! We were really encouraged also because Dylan grew a whole inch since his last appointment in June!! This was a HUGE milestone because Dylan has been the same height for about 10 months. He is our little shrimp. We even went and saw an endocrinologist to make sure that the chemo and radiation did not mess with his growth hormones. Sure enough, all of his tests came back completely normal (which is AWESOME) and the verdict is that he is just a little guy!! He is now measuring in at a whopping 32 inches tall and 25.5 pounds. He is definitely healthy and plump, but is starting to look like a little boy and not a baby anymore. He is still not talking (which some say is a blessing in disguise). He says about 4 words....Dada, Dog, Night night, and mamma (but only when in distress!). He communicates very well with sign language and he understands everything we say to him, he just does not verbally communicate. We are going to get his hearing tested soon also to rule out any possibilities of hearing loss...but he seems to hear perfectly well.

Dylan is a ball of energy! He LOVES to run around, especially when he is outside! I am so thankful for the cooler weather because he loves to be outdoors! He even ventured in to the grass this past week during physical therapy and was running up and down the hill in the park. This is another huge milestone because normally he will not even go near the grass and cries when you make him walk on it. Hopefully this was not a fluke and he will enjoy the squishy green stuff!!

Dylan also has a new favorite game. We call it the copy game. But the only catch is that YOU have to copy HIM! He is obsessed with it and it is the cutest thing to watch him interact with others! He usually starts by rubbing his fists together and then he goes to town from there. Some of his favorite moves are crossing his arms, patting his tummy, patting his head, lifting his shirt (usually the women dont participate on that one!), and then drumming on anything and everything that is around him! He gets so much joy out of people playing his game with him and it is quite entertaining to watch!! He has so much personality and loves to show off anytime someone gives him the opportunity.

His favorite toys right now are his Doggy--which travels pretty much everywhere with us, and tupperware! I don't even know why we have a house full of toys! He gets into my tupperware cabinet a few times a day and runs around the house banging it and stacking it. Now only if I could train him to put it back in an orderly fashion...that would be perfect!!

Well, as I said before, I am 29 weeks pregnant, and for those of you who don't know already, Dylan is going to have a baby brother! Yes, another boy in the family!! We are so excited to meet little Andrew Graham! We chose to name his middle name after Dylan's beloved oncologist and we are delighted that we could honor him in that way! Plus, its a really cool name!! Erik wants to call Andrew, Drew, and I want to call him Andy....so the lil guy will have lots of names!! Dylan has no clue about what is about to happen in a couple months or who will be coming! He is going to be in for a big surprise!! I cannot wait for him to meet his little brother and hopefully he is kind and gentle to him....we will have to work on that a lot! He will probably try to smother him with hugs and kisses! At least thats what he does to other babies that he sees :) We almost have Baby Andrew's room finished and we moved Dylan to a big boy bed! He is doing amazing in it! I could not have dreamed of a smoother transition! We ended up buying a bunkbed that can also be converted to two twin beds and kept the railing on one of the beds. So Dylan's bed has a short railing almost all the way around it! Its almost like a big boy crib!! He could easily get over the rail, but he has not attempted it yet! He goes to bed like a champ and then waits for me in the morning to get him! I seriously think he is the greatest child ever! Besides, if he did decide to climb out of bed, the little munchkin could not open the door because he is too short!!

Well, that is about all of the exciting news that has been going on for the past few months! I am trying to get as many appointments out of the way before December so that I won't have to worry about them once Andrew gets here. Next up on the list are the hearing test, another eye pressure check in November and we need to set up a dentist appointment to check the growth of his teeth! So much to do and so little time!!

Thank you all for your continued prayers and support!! We love you!!

Dylan is going to be a BIG brother!!

2011-06-27T10:12:00.006-07:00

Baby #2 is coming January 5th!! We could not be more excited! We will find out next week whether D will be having a little brother or sister! Regardless, we know that Dylan will be an AMAZING big brother!

Pictures, Pictures....and more Pictures!!

2011-05-01T16:07:00.005-07:00

UPDATES

2011-05-01T09:44:00.003-07:00

Hi guys! I cannot believe that it is May already!! Time sure does fly when you're having fun!! Things around here have been very exciting the past couple of months! We celebrated Dylan's 2nd birthday! YAY!! I cannot tell you how exciting it is to be able to celebrate something that means so much to us. Every year of life with Dylan is a blessing! Every minute of every day of his life is an answer to prayer. I cannot imagine our lives without our little guy. I love to watch people's faces when they see him running around at church. We had so many people who were praying daily for him, and for his life. You can see the joy of answered prayers in their eyes. He has touched so many lives, and God is using him still to show the POWER of PRAYER. It's amazing to see what God has done and we are overjoyed that we are on the receiving end of those answered prayers!!
Another answered prayer....Dylan's pressure in his eyes is PERFECT!! He went in two weeks ago for his 3 month pressure check, and sure enough, the pressure was in the perfect ranges! I sat in the waiting room praying for good pressure, but in the back of my mind, I was sure I was going to hear bad news. I have grown accustomed to hearing bad news. I was so surprised to hear the good report from the doctor! But WHY am I surprised? We serve a mighty and all-powerful God and He alone holds the future in His hands. Thank you LORD for healing Dylan's eyes! The Doc said that the pressure in both eyes were in the lower ranges. He also did a full eye exam and said that he CANNOT see any signs of damage from the glaucoma!! AMAZING!! Dylan's eyesight has even improved a little!! What an amazing report to hear! PRAISE GOD!
We also attended a Charity Golf Tournament sponsored by UFCW99this past month. We were asked to come and speak to raise support for the Leukemia and Lymphoma Society. It was a HUGE success! God used Dylan's story to reach into the hearts of people. At the event, we were also very unexpectedly blessed. People started giving us their money from winning the tournament, and also giving Dylan their raffle prizes! One of the prizes raffled off was a go-kart!! And guess what? They gave it to Dylan! He is obviously too small for it...but daddy will enjoy it for him! I love to see how God provides in the most unexpected ways! Thank you to all of the people who attended the event and for blessing us with your generosity!

These last couple of months have been a whirlwind, full of blessings and unexpected surprises! We are looking forward to a wonderful Mother's day and Father's day and celebrating LIFE as a family. Thank you to each and every one of you who keep us in your prayers and who have been by our side ever since our journey began. We love you all so much!

Love, The Praskins

HAPPY 2nd BIRTHDAY DYLAN!!

2011-05-01T09:16:00.004-07:00

DYLAN IS 2!!! I cannot believe how fast this year has flown by!! Dylan turned 2 on April 16th. Thank you LORD for our little miracle!!

February Updates

2011-02-13T16:18:00.003-07:00

Hello Family and Friends!!

Look who is wearing their glasses! (and actually looking at the camera) He is so adorable, I just want to squeeze him! (and I DO!). He is doing really well lately with wearing his glasses. We usually try a few times a day and he wears them for an hour or two, depending on what we are doing. GOOD JOB DYLAN!! I think he may finally be realizing that they actually help him...such a smart little boy.

Dylan went in for his 3rd eye surgery on January 27th. Just minutes after my mom and I sat down in the waiting room, the doctor came out to talk to us. He said, "We're done, Dylan doesn't need the surgery." We were so surprised! The doc said that he checked the pressure, and both eyes had PERFECT pressure! Now if that is not a miracle, I don't know what is! PRAISE GOD!!! Doc said to keep doing what we are doing....so we will keep PRAYING!! He said that the pressure can change during the day, but he was confident that the pressure would not be going into dangerous levels. WOW!! What a blessing!! Now, we wait. We have to go back in 3 months for another pressure check. Please join us in praying for perfect pressure. We are not expecting anything, but we know that the Lord can heal him indefinitely and that is always our prayer!

Last week, Dylan went to see Dr. Graham, his oncologist. Another AMAZING appointment! Dr. G was very pleased with Dylan's progress and his development. Last time Dr. G saw Dylan, he had just learned how to walk....now Dylan is running everywhere! I love that Dylan and his story has the ability to bring JOY to an office of doctors and nurses who see so many children suffer. His life is a miracle. He is a miracle, and God is the miracle worker. Dylan's blood levels were perfect. They did a full blood draw this appointment, instead of a finger prick. Dylan does not like getting either, but usually the full blood draw is a very painful experience. This time however, he was a SUPER trooper! I give all of the credit to the amazing nurse who found a vein on her first try (always very hard with his chubby little arms), AND also to the Dum Dum sucker that Dylan was slobbering all over!! YAY for candy!! He did not even seem to notice what was going on as long as I kept that yummy sucker in his mouth. It was awesome!! After they drew the blood, all of us looked at each other and were shocked that he did not cry....not one bit! Go Dylan!

Dylan is now 23lbs and 31 inches tall. He is running all over the place, and now experimenting with hopping...one foot at a time. It is quite funny to watch! He is a bundle of energy and blessings. We could not be happier with our little family. Thank you all for your prayers and encouragement. You guys are truly amazing!!

Cherishing every moment,

The Praskins

3rd Time's a Charm??

2011-01-25T10:58:00.005-07:00

Hello everyone! We hope you had a WONDERFUL Christmas and are having a GREAT 2011 so far! We are having a blast! I cannot tell you how much fun it is to have a little toddler around the house! HE IS SOOOOO FUN!! He loved Christmas....or at least the wrapping paper :) He now has enough toys to last him for 5 years! He is loving his newfound freedom and loves to run up and down the hallway...and then up and down again. I call him my little wind-up toy...because once you put him down, he does not stop :) He is getting stronger and stronger everyday! He can now stand up all by himself from the middle of the floor. This may not seem like a BIG accomplishment, but to us, it is HUGE! This means his core is getting stronger, and with that, everything else gets stronger. His newest thing that he likes to do is to carry his toys from room to room. He no longer like to grab the 'small' toys, yet the ones that weigh half of his body weight! I hear grunting down the hall...then a big crash, then more grunting, and then he walks in the living room carrying his toy with all his might! It is quite the site to see. Dylan is still not a big talker...not really at all. He CAN say mamma and dadda, but does not do it very often. The only thing he says multiple times a day is 'da' (dog) and yiyyy (lily...our DOG!)....so, he pretty much loves the dog! So, since he is not talking yet, we have begun to learn signing. He has three signs down really well. MORE, PLEASE, and EAT. What else do you need, right?? It's hilarious because whenever we are in the vincinity of his high chair, he does the EAT sign and says ahhhhhhh....like 50 times a day! It cracks me up...he wants to eat all of the time!! This is a good thing in my eyes (but don't worry, I do not feed him 50 times a day). That brings us to the eating. He loves to eat...but it very picky about what he will eat. He is still not eating any type of solids. He will munch on baby crackers, but once a chunk comes off, he starts gagging and trying to fish it out of his mouth. I try to blend up foods, but if they are not 'baby food stage 2' consistency, he freaks out and acts like I am torturing him. As you can imagine, this is very frustrating. He is 21 months old and still eats all pureed food. I would do ANYTHING to have him eat normal food and sometimes meal time is so disheartening. We are working with therapists to train his mouth and muscles, but it's going to be a long process. So, if you think about it, please pray for me and for patience. THANKS SO MUCH!!

Alrighty, on to the bad news. Dylan needs another eye surgery. This will be eye surgery #3. We went in last week to get his pressure checked and the pressure in his right eye was back up. The left eye was still stable, but my guess is that it too will follow in increased pressure (left eye had surgery one month after right eye). Originally, we thought the next step was to put in shunts, but there is still one procedure we can try before that. I am so bad with remember the procedures names, so I will just explain what it is in my 'mommy' terms. During the next surgery, the Dr. will take a laser and cauterize the outside of Dylan's eye, and that will in turn, hopefully reduce the pressure. The good news is that the Dr. could do both eyes in one day because Dylan won't need to wear a patch afterwards. This comes as great news to us because hopefully it will be a lot less traumatizing for Dylan. The surgery is on Thursday at 5pm at Phoenix Children's Hospital. We thank you in advance for your prayers! We can't stand to see him go through anymore surgeries, but we are thankful that there are surgeries available to help him. We probably will not know if the surgery was successful until at least a month later when they will check his pressure again. I will update with any news that we have. Thank you again for being loyal supporters and prayer warriors...WE COULD NOT DO THIS WITHOUT YOU!!

Taking it one day at a time,

The Praskins :)

MERRY CHRISTMAS!!!

2010-12-15T11:12:00.004-07:00

MERRY CHRISTMAS EVERYONE!!

I cannot even begin to express how exciting this Thanksgiving and Christmas has been. No IV meds, no clinic visits, no dressing changes....and we have a HEALTHY BOY!! He is the BEST Christmas present we could ever ask for! 2010 has been a WONDERFUL year and we are so blessed!!

Things have been crazy busy (as usual) at the Praskins house! Dylan is now done with his second surgery on his eyes. He had his right eye done in October, and his left eye done two weeks ago. When they checked the pressure in his right eye, it was at a 13, which is awesome....but we won't know for sure if the surgery worked until the next exam. We have another exam under anesthesia scheduled for January 12th. This exam will be the one that will show us if his pressure is stable or not. PLEASE PRAY that it is! We need his pressure to be reading in the 10-20 range. IF this 2nd round of surgeries did not work, then we will need to go through with a more invasive and permanent surgery.

We also visited Dr. Graham this month. Dylan now only has to go in every two months! YAY!! I still remember driving to Tucson 2 times a week for clinic visits.....SOOOOO glad those days are over. Of course, Dr. G is now closer in Mesa, so that makes the trips even more convenient :) Dr. G was overjoyed to see Dylan's progress and to see him walking around the clinic! Dylan acted like he owned the place and was walking and practically running down all of the halls. He loved all of the attention from the staff and nurses and loved showing off his new skills. It's always a little nerve wrecking when they draw blood and we anxiously await the results. BUT, ALL BLOOD COUNTS WERE PERFECT!! Praise the Lord!

We had our first 'normal' sick week with Dylan last week. The poor little guy got the flu and was making all sorts of messes for mommy to clean up. It was a rough week for all of us, but with lots of cuddle time, we made it through.

Dylan is still cutting some more teeth. Does the teething ever end?! He now has 4 on the top and 4 on the bottom. There are 4 more that are making their way through on the bottom and they are taking their sweet time. They are molars and are making Dylan's mouth miserable :( We are hoping once he has some molars in, that he will be more interested in chewing some food. At this point, he only eats pureed foods and won't eat any bites of any kind of food. So, maybe the new chompers will help :)

Well, we are busy getting ready for Christmas and are excited to spend this year NOT worrying about cancer. God is so good, and has blessed us beyond measure!! Our hope and prayer for all of our friends and family is that you CHERISH every single moment with your loved ones....you never know how long you will have them. Thank you for your continued love and support! We love you all and wish you a VERY Merry CHRISTmas!! May your 2011 be filled with lots of LOVE and JOY!!

Loving life and living it for the Lord,

The Praskins

Chicago-Nov 2010

2010-11-23T19:53:00.004-07:00

Erik and I had the opportunity to visit one of my best friend's Emily and her hubby Jake. He is going to Moody Bible in Chicago and they live in the heart of the city--it was AWESOME! We decided to leave Dylan with the Grandparents and take a little trip with just the two of us....it was a GREAT idea!! Now don't get me wrong, we love our little stinker, but it is also nice to get time away. I was also glad that he did not have to freeze along with us!! Erik has family close to the city too so we drove out to see them also. It was a fun filled week of friends, family, sightseeing and LOTS of yummy food! We had a blast and are so thankful that we had the opportunity to visit!

Light the Night- November 2010

2010-11-23T19:29:00.003-07:00

Hey guys!! Light the Night 2010 was a huge success!! As a team, we raised almost $5000! We had around 140 walkers with all of the 'little' walkers or stroller riders included. Thank you to everyone who was able to make it out to walk in support of the Leukemia and Lymphoma Society, and in support of our family. We are truly thankful to each and every one of you who came out to walk with us! And thank you to all of you who were able to help raise funds or donate to this amazing cause. Because of you, someone will be able to hold their loved ones longer and will be able to live better lives!

We all had a special treat that night.....Dylan walked!! He has been walking 5-10 feet for the past few weeks but had never gone further without someone coaxing him. Well, the night before the walk, he decided it was time! He knew that the next evening would be special and wanted to show off for everyone!! He was so cute! There was a crowd of people circled around our precious little miracle, in awe of his progress and his determination to grow and thrive! The night couldn't have been any better. I can't help but think of last year and the position we were in at that time. We had no guarantees and were waiting day by day to see what would happen. What we DID know was that we served an amazing God who had every detail planned, and Who was in complete control of Dylan's precious little life. Today we are in awe of what God has done in Dylan's little body. Although remission does not come without it's challenges, we are enjoying every single minute with our WALKING MIRACLE!

Thank you again for every person who was involved in making this year's Light the Night Walk a huge success. We are surrounded with such an amazing support group of friends and family and we love you all!!

Walking by FAITH,

The Praskins

Dylan is 18 months old!

2010-10-19T14:47:00.005-07:00

Can you believe our baby Dylan is 18 months old!! He is getting so big! We decided that it was time to give him a "big" boy haircut. We took him to the kids haircutting place by our house and he sat in the cool red car. I watched as they chopped his crazy wavy hair and tried not to cry. He looks so old now!! Maybe a little closer to his real age :) He is no longer our little baby and is becoming a fun little toddler!!

We had Dylan's eye pressure checked again last wednesday. We were expecting the pressure to be in the 15-20 range as it was the previous pressure check. This was not the case, and the pressure is back up. The surgery was not a success. As you can imagine, this was a huge setback and disappointment, BUT, God is in control and now we go to the next step. The doctor is going to do a 2nd goneotomy on both eyes. He is hoping it will work the second time around. It's hard to predict anything with Dylan because he is so special. There are not any other kids like him. He is a special case :) The doctor has another infant who recently underwent his 2nd goneotomy and it was successful the second time, so there is hope. If the surgery does not work, then the next step would be to put shunts in his eyes to drain the fluid. We want this surgery to be a last resort because it can only be done 4 times in each eye because it causes scar tissue. We are praying for success for this second surgery! Please join us!!
Besides the eye pressure thing, Dylan is doing wonderful!! He now has 6 teeth! Two on the top and four on the bottom. He has been teething for what seems like forever and I will be VERY happy when he is done :) BUT, that is far away! He is chugging along developmentally. He is still really behind according to his age, but he is right on track according to his adjusted age (18 months -8 months of treatment). He is still not walking, but has crawling mastered....he is super speedy!! He CAN walk...he just chooses not to. He will take 7-10 steps from me to daddy, but other than that, he is not interested. A lot of his walking issues have to do with his vision. Which brings us back to his glasses. He hates them! I don't blame him, because if I were his age, I would hate them too. So, until he figures out that the horrible things I keep putting on his face actually help him see....he will be crawling. When he is crawling, he can see the floor below him. When he is 2 feet up, everything is blurry. I will try to get a good pic of him in his glasses and post it. But that will require him to keep them on for more than a minute :) Right now, when I put them on, he almost freezes and won't look around or play, he just concentrates on getting them off....which is hard when I am holding his hands or constantly trying to distract him with toys. It is a process. Please pray for us! I know he will eventually wear them and eventually walk, so I am not too worried.

Thank you for the continued love and support....you guys are AWESOME!!

Love,

The Praskins

2010 Light The Night Walk--Saturday, Nov 6th

2010-10-03T20:20:00.008-07:00

This is our 2009 walk team! We were overwhelmed with love and support and it was amazing to see the HOPE and LOVE that can come from friends and family joining together for a cause!

This year's walk is Saturday, November 6th at

Sahuaro Ranch Park

9805 N. 59th Avenue

Walk Distance: 2 miles

Check In: 5:00 PM

Opening Ceremony: 6:00PM (Dylan will be a part of this!! )

Walk Start Time: 6:30PM

HI EVERYONE!! First of all, I wanted to thank all of the people who came out to support Dylan and our family at last year's Light The Night Walk. Representing the largest team at the walk, we had 130 friends and family walk in Dylan's honor and help raise money for the Leukemia and Lymphoma Society for research. This year, we are excited for another great night of fellowship, support, and raising funds for research and awareness of Leukemia.

When we did the walk last year, we were still in the middle of Dylan's treatments. He had his bone marrow transplant just two months earlier and he was still very weak and sick. His future was fragile, and we did not know if he was going to survive. We were walking in honor of him and in the hopes that God would heal him completely. I believe that God used research done by the Leukemia and Lymphoma Society to heal Dylan. Dylan was going through treatments that had no protocol for children his age. We choose to support LLS because of the amazing research they do. My dream would be that someday the survival rate of an infant diagnosed with Leukemia under the age of 6 months would go from 20% to 100%. The cure is out there, but the research needs to be done. Please join us in being a part in contributing to saving the lives of children and families who are affected by Leukemia and Lymphoma. This year, we CELEBRATE life with Dylan and are proud to have a survivor! Please come and CELEBRATE with us! We are excited to have Dylan present at the walk this year and maybe even WALKING this year! (maybe just a few steps :) Bring the kids and make it a family event. This year there will be entertainment for the kiddos too!

WANT TO JOIN OUR TEAM???

Sign up at http://pages.lightthenight.org/dm/WestSide10/DylansDreamTeam then click on "WALK WITH US". From there, you can create your own page and send supporters straight to your page to raise funds. When they donate online, it sends them a receipt via email. There are even gifts and prizes to those who raise over $250!

We want to challenge every walker on our team to raise $100 and become a Champion for a Cure. For every walker who raises $100 or more, you get a Light the Night T-Shirt, illuminated balloon, and a dinner that night from Texas Roadhouse! We are still working on getting team shirts, so stay tuned for more info on that! :)

We have set a team goal of $10,000. If we have at least 100 walkers, that is just $100 per walker. And remember, this is money you are RAISING. We know that the economy stinks right now and that people do not have a lot of extra money, but if you know 10 people that can donate $10 or 20 people who can donate $5, then you hit your goal!!

Can't make the walk but still want to raise funds? Create an account and raise support, or send others to our team page. You can look it up from the main page at lightthenight.org under Dylan's Dream Team, or click the following link http://pages.lightthenight.org/dm/WestSide10/DylansDreamTeam

WANT TO DONATE?? Please go to our page and make a donation. Remember, no donation is too small, and every penny counts!

Please join us in supporting the Leukemia and Lymphoma Society as we help to find a cure for blood diseases.

THANK YOU FOR YOUR SUPPORT! We are looking forward to a fun-filled evening on November 6th and can't wait to see you there!

One more thing! Dylan is a celebrity....well, at least a Leukemia Survivor Celebrity! If you go to Texas Roadhouse in arrowhead, you will see his picture! They are big supporters for LLS, and are raising funds! Enjoy a FREE appetizer with a $5 donation to LLS during the month of October.

More updates and pictures to come!!

Love, The Praskins!

ONE YEAR, CANCER FREE!! Saturday, September 11th, DAY +365!!!!

2010-09-12T14:52:00.004-07:00

365 days ago, Dylan received his life saving cord blood transplant.......and 365 days ago, God healed our son. To God be the glory!! We never thought this day would come, and it's through tear filled eyes that we remember the last 365 days!! Wow, God has blessed us so much. Although it does not seem like it has been a year already....so much has happened since then. I can remember that day as if it were yesterday. We were so anxious, and praying harder than we have ever prayed before. "God, could this be it? Is this how you are choosing to save Dylan? Will he make it through this?"....so many unknowns, but one thing was always clear....God was in control, and Dylan's life was in His hands. To this day, I still wonder why God chose to heal Dylan, but has taken so many children that were close to us home to be with Him. Why us? Why Dylan? All I know is that we did NOTHING to deserve such a miracle and we will do EVERYTHING to make sure that God is given the glory through Dylan's life. We know that the Lord has great plans for Dylan and that He has already used Dylan to touch the lives of others!

We will be seeing Dr. G this week for Dylan's 1 year check-up and I am excited to get the report!! Thank you to all of you who have traveled this journey with us! You have helped us more than you could ever know.

MORE TO COME!!

Eye surgery is over! .....at least for now

2010-08-29T20:33:00.003-07:00

Hello everyone! Dylan had his second eye surgery on the 18th, this time on his left eye. When the Doc checked his pressure on his right eye (the one that already had the surgery), the pressure was 15! PRAISE GOD! It worked!! We are hoping to have the same results with his left eye. This is such a huge leap forward. Now that the pressure is under control, it is no longer damaging his optic nerve. Time will tell how damaged it actually is. Sometimes, relieving the pressure can actually reverse some of the damage. This is our prayer! Dylan is also really nearsighted as I have said before. We were able to get some glasses for him, but he is not a big fan of them and pulls them off the second I put them on. This will be something to work on. He can basically see clearly about 6-8 inches in front of his face. Everything else is blurry. He has gotten used to seeing like this, so it will be a big transition to see EVERYTHING clearly. Please pray for patience for me as I try to get him to wear his glasses, and that he sees how amazing the world is through the lenses. We also went to see Dr. Graham that same week. Again, Dylan received amazing lab results and praises from Dr. G. The whole time we were in his office, Dylan was crawling around and climbing on things and doing his new favorite thing.....break dancing! He loves to lay on tile or wood floors and spin around in circles with his feet in the air. It is quite hilarious. He will spin and spin until he gets dizzy--he loves it!

We now have 3 different therapies that Dylan receives every week. We have had a developmental specialist and physical therapist for the past 6 months, and I love them both! Now we have added a speech therapist. We have been having issues with feedings. Dylan cannot move his tongue back and forth in his mouth. This is an issue because he cannot control where the food goes and ends up gagging on it instead of mushing it with his teeth and gums. He LOVES to eat. So for now, he eats mainly yogurt and baby food. He can't have little puffs, cheerios or anything that is chunky.....yet. We will get there and the therapist feels that it is something we can overcome. We just have to 'wake up' his tongue. This was probably a minor issue when he was born and became more intensified through his journey. But knowing Dylan, there is nothing he can't conquer! In addition to a speech therapist, we will be seeing an occupational therapist to help with fine motor skills and feedings also. So are you counting therapists yet....yes, that will make 4!! But just to make things interesting, we may be doing vision therapy also!! I'm exhausted just thinking about it! But I want to do anything to help D get on track. All of the therapists feel that he is just delayed and not disabled. They have not seen any signs of him being incapable of learning and this is a HUGE praise!! There can be a lot of side effects from chemo and radiation, and some of them we may not see until later in life. Learning disabilities can be one. Another we just learned about has to do with his adult teeth. Because adult teeth start to form at 6 weeks of age, Dylan's growth may have been delayed or halted. In some cases, infants who undergo chemo do not form some of their adult teeth. He should have all of his baby teeth because those form in utero. As of now, he has two on bottom and two on top with two more coming in around his bottom teeth. We will be able to see if he is missing his adult teeth when he is at least 3 years of age....until then, I cannot let myself worry about it....and we can't do anything about it anyways :) And about the teeth he has now....he chews on anything and everything! He chews on cribs, tables, plates, my KNEE....pretty much anything he can get his mouth on!

In 13 days, we will be celebrating Dylan's one year of being CANCER FREE!!! Can you believe it?? I can hardly believe that it has been a year already! I'm in tears just writing this! He is such an amazing miracle and we are truly thankful for each and every day. Thank you to all of you who have cried, prayed, and hoped with us to make this day possible! Many prayers have been answered and miracles seen.....GOD is AMAZING!

WE LOVE YOU ALL!!

The Praskins

Abby Grace

2010-08-23T18:34:00.003-07:00

Sweet Abby Grace went to be with the Lord on Sunday evening, August 8th. She had her mommy and daddy and family by her side. I cannot begin to tell you of the heartache that I feel for the Mullens, or the heartache that I feel myself. Abby was so special to us. Her smile lit up the room and her bubbly personality was contagious. When Dylan was getting his transplant...when he was in his worst condition, Abby's sweet face gave me hope. I would wait by the phone in our room hoping Jennifer would stop by the front desk to say hi, and almost everyday, she did. I would trek down the hallway in my jammies (my hospital attire:) and look forward to seeing Abby's beautiful smile and get a warm, familiar hug from Jennifer. Sometimes a friendly face was all I needed to get through the day. Jennifer always joked that she was happy that we got to go first...so we could be the example and she would know what to expect. My response to her was always that we were privileged to get to be an example. There were so many unknowns at the time, and Dylan and Abby were so similar. They were only 3 months apart with treatments, and I was able to help and encourage Jen along the way....and tease her. We grew close, and there is nobody that can identify with you unless they too, have gone through this horrible disease with a child of their own. We had an instant bond the day we met and cried together. Abby and Dylan had that bond too. In the beginning, Dylan was still very young and very sedated all of the time....but that did not stop Abby. I remember one day we went into clinic, Dylan was sleeping in his car seat and Abby was determined to see that baby under the blanket. She practically jumped off of Jennifer's lap to get a sneak peak. It was quite funny. I had to pry her little hands off of the handle of his car seat....it was love at first sight!! Anytime we came in the room, her face would light up and she would stick out her hands as to grab Dylan, while her tongue hung out of her mouth. She just wanted to lick him and squeeze him! Unfortunately, Dr. Graham would not allow it. He would always say, NO licking, NO touching, NO kissing! HA! They were both so immune compromised that they could get each other sick. Nevertheless, their bond was immediate, and strong!

We attended Abby's Celebration of Life last week. It was so hard to say goodbye, but also so exciting to know that she is in heaven. She no longer has to bear the pain of cancer and is dancing in heaven in her new body. Please keep the Mullens in your prayers, as this is going to be a very long healing process. I cannot imagine my life without our precious Dylan. And yet, this could have been God's plan for his life. Life is short. Nothing is guaranteed, whether you have cancer, or are perfectly healthy. Please take time to love those whom God has blessed you with and do not take them for granted. The Mullens cannot bring Abby back, but they can make sure that her life had a purpose. Anyone who met Abby was changed. She had a special gift that only she could give. We are all better people for knowing that precious girl.

Thank you for your prayers :)

Living everyday like it's my last,

Michelle

Cardinals Training Camp with HopeKids 8/3 and The HopeWalk 9/26

2010-08-07T20:04:00.005-07:00

Hi Everyone! We had an amazing opportunity to go to the Cardinals training camp this past Tuesday with Hopekids, and we had a blast! The weather was beautiful in Flagstaff, and it was nice to get away for the day. The Hopekids organization arranged for all of the kids to be able to meet the players after practice and even get autographs! Since our little Hopekid is too small to walk....Erik was able to go with Dylan and get to meet the players too! He was soooooo excited! Although Dylan may not be able to appreciate the experience now, he will definitely appreciate his signed jersey later :) Erik said that all of the players were really nice and that they each took time to talk with the kids. A few players even held Dylan and we were able to get some pictures! The pictures that we have on here are the ones from my camera, but we will have some more "official" ones posted later! Enjoy!

What is HopeKids?? I'm glad you asked....HopeKids provides ongoing events & activities and a powerful, unique support community for children with cancer and other life-threatening medical conditions. They surround these remarkable children and their families with the message that hope can be a powerful medicine. We have been blessed enough to attend numerous HopeKids events....and they are all free of charge to the families. They do everything from sporting events, to date nights for moms and dads, to movies and activities for the kids, to arranging for kids to meet with their hero's one on one. They provide an environment for families to come together with a common bond, and for kids to be able to be around other kids with the same life challenges. Dylan is now a HopeKid hero! When he is a little older, we hope to be able to go and visit other families that are in the hospital and encourage them with Dylan's story and smile. HopeKids really helped us specifically in the first few weeks when Dylan got diagnosed. The way the laws are now, nobody is allowed to contact you or talk to you unless you 'sign up' for their services...and we are so happy we checked the HopeKids' box. Bridget (from HopeKids) called me with the name of a family that had a young boy, almost the same age as Dylan when he got diagnosed. This was the first family that I had heard of with a child as young as Dylan. Little B's mom was able to encourage me and give me hope through their experience and give me an idea of what I could expect. We were surrounded by negative statistics and circumstances, so B's family was such a huge encouragement to us. God works in mysterious ways, and we are so thankful that He brought us to HopeKids! A big THANKS to HopeKids for all they do for families like ours and the Hope and encouragement they bring to the kiddos!

HopeKids is having a Hope Walk on Sunday, September 26th. We are going to be out of town that weekend and sadly will not be able to attend. BUT we still want to be a part of raising money for this amazing organization. If you would like to make a donation, please click on the following link http://www.firstgiving.com/michellepraskins . Our goal is to raise $1000. If you would like to participate in the walk, here is the information:

Location: The Plaza on Market Street at DC Ranch, 20645 North Pima Road Scottsdale, AZ 85255
Date: Sunday, September 26th, 2010
Registration: Starts at 7:30 AM
Time: The 5k HopeWalk begins at 8:30 AM
Fundraising goal: $65,000
All proceeds to benefit HopeKids and will help provide HOPE to children battling a life-threatening illness and their families.
Please join us for the 2010 HopeWalk around the beautiful community of DC Ranch in North Scottsdale. Last year, more than 500 people came to WALK FOR HOPE and supported HopeKids by raising over $55,000!!

FOR MORE INFO GO TO HOPEKIDS.ORG

Thank you for supporting us! Remember that no donation is too small :) Have a great week and I will post more pics later :) Love you guys!

Walking by faith,

The Praskins

Day +318....1st Eye Surgery :(

2010-07-26T11:19:00.004-07:00

Hi everyone! It's time for our monthly update and this month has no shortage of challenges :) We went in this past Wednesday to get Dylan's eye pressure checked under anesthesia. We were hoping that the pressure in his eyes would be under control with his drops; unfortunately, this was not the case. A normal eye pressure should be around 25, and in past testings, Dylan's was in the high 20's with the drops. The drops SHOULD keep his pressure in the low 2o's. Well, this time, his pressure was pushing 35 in both eyes. When the doctor came out to the waiting room just 5 minutes after they put Dylan under anesthesia, I knew the news was not good. Because the drops could not keep the pressure at bay, they had to do a small surgery on his eye. With a laser, they made a small incision right where the cornea (white part) meets the iris (colored part). This incision is supposed to help relieve the pressure of the fluid in his eye. If the pressure does not get under control, then it will continue to cause damage to his optic nerve causing sight damage. They operated on his right eye first, because it has the most damage and will operate on his left eye in a few weeks.

When Dylan was being woken up from the anesthesia, he was VERY scared. I have walked into the O.R. many times after anesthesia, hearing the his cry, but this time it was different. I don't know what I was expecting to see, but I did not expect to see half of his face covered in tape with a huge metal patch over his eye. He was so scared. Normally, he eats right away (because he is starving), but this time he just kept screaming and crying. I can only imagine how he felt....so disoriented. All I could do was hold him tight and let him know that mommy was there. He cried so much that he passed out for a few minutes and was even snoring! Then, when he woke up again, the screaming commenced. That afternoon was very unproductive. I spent 7 hours cuddling with him on the couch. He finally ate, and then took his position back on my chest and nuzzled his face close. I think I saw his left eye open once, but that was it. He only wanted to sleep and cuddle and keep his eye closed. Poor kiddo. He has been through so much, and it is never easy seeing him in pain :( This time, I don't think it was pain as much as frustration and confusion because he didn't know what was going on. Thankfully, he was able to sleep almost through the night in his bed and gave me a little break :) At least when we go in to get his left eye done, I will be more prepared.

The next morning, Dylan was Dylan again. He adjusted to the patch and was hopping along the couch and being his usual playful self. I LOVE HIM SO MUCH! We went in that morning and got the patch off, and some more drops to put in! YAY!! We love drops!! Ok, so we really actually dislike drops very much, especially when they have to be put in 4 TIMES A DAY! So in addition to his morning drops, and 2 sets of drops at night, we have two more sets of drops that have to be done 4 times a day at least an hour apart. So basically I am laying him down and prying his eye open every couple of hours :( He needs a medal of some sort...such a trooper!! We also ordered his glasses that day and they should be in this Friday! I am excited to try them out and praying that he will actually keep them on! This should be another fun battle. After the eye appointment, we headed to Mesa to see our beloved Dr. Graham! We love Dr. G! This was our first time not driving to Tucson to see him and we were very happy about that! It's still an hour away, but we will take that drive any day. ALL GOOD NEWS at Dr. G's office! YAY!! PRAISE GOD!! I did not know if I could handle any more bad news that week. His counts are perfect and Dr. G was very impressed with the progress Dylan has been making. All of the staff of the clinic had to come and see the 'Miracle Baby'. And it is so true--HE IS A MIRACLE!! The last time we saw the staff at that office was when we were headed down to Tucson for his transplant. They saw him when he was so little, and so sick. What a blessing Dylan is to the staff of a cancer clinic. God is using Dylan to be a light and support to those who see so many deaths and sadness.

As for progress, Dylan is growing by leaps and bounds. He is 15 months old and weighs 19lbs and is about 29 inches tall(he's our little shrimp:) He is crawling EVERYWHERE and prefers army style over normal, probably because we have a lot of tile. He is cruising along the furniture and loves to try to make his way around the room by reaching for any object that can get him closer to his goal. He climbs anything and anyone who is around him. He LOVES playing patty-cake! He does this funny thing where he hold up his hands in fists and his body shakes anytime he gets excited.(see first pic) It is quite hilarious and we find ourselves trying to get him to do it over and over again. He just makes me laugh. He is so much fun to play with! He is jibber-jabbering a lot and says mama and dada and baba quite well....although when I ask him to say mama, he usually says dada and then blows a raspberry. Funny kid! He is a true blessing, a miracle, and the best gift that we could have ever been given....cancer and all!

ABBY UPDATE: Well, a week ago, Abby was doing REALLY well! There was no sign of the leukemia, and she was eating and playing and had a miraculous turn around. Sadly, today, I heard from her mom and her blood counts are showing that she has 27% blasts (leukemic cells), and she has a lot of swollen bumps on her head. They believe the bumps are leukemia. As you can imagine, this is a horrifying roller coaster of ups and downs for Abby's parents. Please pray for strength for Abby's body to fight off the leukemia, and that the Lord will give the doctors wisdom on what to do next. Pray for John and Jennifer that they have clarity on what they should do next and that they have strength, both emotional and physical to get through one day at a time.

Thank you all for your continued love and support. Talk to you next month! :)

Running the Race set before us,

The Praskins Fam

Day +283.........over a year since diagnosis

2010-06-21T20:06:00.008-07:00

June 13, 2009.....6pm...."Your son's white blood cell count is extremely elevated. That can mean one of two things; he may have a tumor of some sort, or he has Leukemia." I can hear those words as clear in my mind as I heard them over a year ago. Cancer has changed our lives-- Leukemia has changed our lives. I still cannot believe it has been over a year since Dylan was diagnosed. I remember that day so vividly-it was a nightmare that became our reality. It is hard to write this without crying, even knowing the wonderful outcome. We were so desperate for answers that day. So worried, frightened, and scared beyond our worst imaginations. He was just so little....so precious...our little boy. I WILL NEVER forget that pain. And I do not want to. I don't want to forget about how God brought us through the unimaginable. How He was by our side every second of every heartbreaking day....and remains with us today. How GREAT is our God?! Praise Him for bringing us through this horrible trial as a stronger family with a greater love for each other and for Him! Whew....WHAT A YEAR! Now, we get to deal with the boring, everyday troubles of life....and it is AMAZING! I LOVE being bored! Ha! I love laundry, cleaning the house, and getting to spend every second of my boring life with my family! Things are going very well around here. Dylan had his LAST appointment in Tucson 2 weeks ago, and Dr. Graham is officially moved to the Banner Desert in Mesa. It will be nice not having to drive to Tucson anymore, but we will miss our friends and nursing staff dearly. I am sure we will make a few more trips down there to visit everyone :) Dylan's labs and numbers all looked perfect. His platelets are above the highest average number, so Dr. G said that he wants some of them back! Ha! He amazes the nursing staff every time they see him. He is a bundle of energy and smiles! This has been a very hard year for transplant patients, so it is always great for them to see the good cases :) Dylan is a major attention hog. HE LOVES ATTENTION. He has a knack for getting people to pay attention to him and he does not have a shy bone in his body. Last week we went back to Phx Childrens for another eye pressure check, and he had those nurses putty in his hands. He was blowing kisses and batting his eyelashes and flashing his pearly whites....it is quite entertaining watching him 'work' his audience. His eye pressure test did not go too well. His pressure is still high, despite being off of his steroids. The Dr seemed a little worried, but we are going to give him another month with drops before we try surgery. His next pressure check is scheduled for late July, and if the pressure is still high, then the Dr will make a small incision in each eye to try to relieve some of the pressure. This will be the first step before doing a more invasive eye surgery. Please pray that his drops can help the pressure on their own. The Dr also said that he is severely near sighted and will need glasses as soon as he starts walking. I hope they make those things indestructible! :) In other news, Dylan is REALLY wanting to walk. He still has a very weak core, but he is building his muscles quickly. His physical therapist brought over a little catwalk with rails that he loves to walk along....its only a matter of time. Thank you to all of you who continue to pray for Dylan.....we are truely thankful for each and every prayer. Please continue praying that his eyesight does not worsen and that the doctors can figure out a way to stop his pressure. Other than that, he is doing amazing! A bundle of joy! Thank you for your support and LOVE!! We love you!

Day +255....255 down, 110 to go to get to 1 YEAR of Remission

2010-05-24T14:37:00.006-07:00

Hello Everyone!! Thank you for your patience in waiting for me to update. Dylan is taking a nap right now, so hopefully it is a long one! God could not have blessed us with a better child.....cancer and all! I would do it all over again if it meant being able to spend time with him. He is so full of life! Erik always says that somehow Dylan knows how blessed he is to be alive, and that is why he is such a happy child--and in some ways, I believe that too! He keeps us entertained 24/7. He is always learning something, and surprising us with new adventures everyday. Developmentally, Dylan is soaring. He has come so far in the past 5 months. When we came home in December, he was barely moving around. He would sit in your lap and smile, but that was about it. Now, he is a crazy, moving machine! We think that he is going to skip crawling and go straight to walking. For the past couple of weeks, he has been learning to stand along the couch and ottoman, and now he can stand there for long periods of time without any assistance. He is working on side-stepping right now, and I'm sure he will be a pro by next week. We got instructions from the physical therapist to limit his time in the jumper. This was a hard task because he LOVES to jump in his jumper--the problem with that is he thinks everyone is a trampoline and wants to jump everywhere!! So, we have been spending more time in his walker and walking with holding onto our hands. He has been using the walker for about 2 months now. He used to always get frustrated in it because he could not JUMP in it, like the jumper, and would always get bored quickly. That was up until about 3 days ago.....NOW, he loves it!! He is a walking maniac! He quickly darts from one end of the house to the other! It really is amazing how quickly he got the hang of it! He even chases me and Lily around the house! He thinks its hilarious to run into me while I'm in the kitchen cooking or cleaning. He rams into me and then laughs hysterically! This kid is hilarious! He is a constant joy....even when he is being a little monster....and yes, he is a normal child....not perfect ALL of the time :) He loves to clap! He has been clapping with his feet for months (which I have to say is a strange, but entertaining talent), but he is now also clapping with his hands! It is so cute! He loves to wave at people, and he is quite fascinated with his hands and how they move. He loves to blow kisses too! He usually just smacks his mouth repeatedly...but we know what he is trying to do. He is becoming more vocal. He used to just growl and scream to make noise, but is now 'singing' a lot. He loves to be heard! Especially if people are talking, he wants to make sure you remember he is there. He is not saying any words yet, but when you tell him to say 'Daddy", he blows a rasberry! It is hilarious! He does it almost every time! He LOVES the water! He practically jumps out of my arms when I walk by the sink (because that is where he used to get baths) or if I walk by the tub with him. Bathtime is his favorite time of the day! We have gone swimming a few times and he LOVES it! We have to be careful to keep him in the shade because of his eyes, but as long as we have shade, he is happy! Medically, everything is going really well. His labs were perfect and he has not had many major issues. We will be getting his eye pressure checked again on June 9th, so please pray that the drops are working so we can avoid surgery. I cannot tell you enough how wonderful Dylan is! Everyday is a blessing. And when I get frustrated with stupid problems of life, I look at him, and am reminded of the miracle that we are blessed with. In the grand scheme of things, the little problems do not matter and they are not worth stressing over. Life is a blessing. We are not guaranteed a certain amount of time on earth...our kids, our husbands, wives, family, and friends, are all gifts from God.......cherish each and every one of them!!

Many of you have been asking about Abby, and we appreciate your support and prayer for her. She is hanging in there and fighting hard! She is on a heavy pain medication drip that is controlling her pain well. Although she is sedated and sleeping a lot, she also has her entertaining moments. She had a few great nights this week where she was happy and playful....and those times are cherished greatly. They all celebrated her sister Alyssa's, 4th birthday party on Saturday and had a great time. There is not a lot to update right now, but I will let you know as soon as I have new information.

We love you all and thank you for your continued prayer and support.

Walking by faith,

The Praskins

Tucson Visit and Clinic Picnic

2010-05-17T19:04:00.008-07:00

Hello Everyone!! We headed down to Tucson on Friday for Dylan's appointment, and then spent Saturday hanging out with Abby and family at the clinic picnic. It was great getting to spend some time with Abby and her family. She is so much fun! She was in a great mood on Friday night when we went out to dinner. She was all smiles. So precious. It's wonderful watching her and Dylan interact....they are fascinated with each other. But, Dr. Graham gave orders for no kissing....no licking....no touching.....so we had to be careful! :) The two kiddos were the center of attention at the picnic. They hung out and played underneath the big umbrella, and the crowds came to them! It was great to see all of our nurses who took care of Dylan--they had such an impact on us. The picnic was actually a going away party for Dr. Graham. But, fortunately, we are not saying goodbye! He is moving to Mesa to work at Banner Desert. We have only one more trip to Tucson :) I have a feeling I will still be going there every once and a while to visit friends, but no more doctor visits. :)

DYLAN UPDATE: Dylan's labs were perfect. He is doing great....I will update on next post about more details, but for now....Abby is heavy on my heart.

ABBY UPDATE: Well, Abby was happy and vibrant during our visit. Her smile lit up the room!! When there was music playing at the picnic, she was bouncing away, dancing to the music. ADORABLE!! Now, the tough stuff......sadly, her treatments are not working. Her leukemia is so strong and will NOT give up. But neither will Jennifer and Jon! There are not any more options left to try. They are hoping and praying that this treatment works. She is in a lot of pain right now. They are trying to stay out of the hospital, but if her pain cannot be controlled, then they will be admitted. WE ARE PRAYING FOR A MIRACLE......PLEASE, PRAY WITH US! I don't know what else to say :( Thank you for standing with us through this journey. We have had a happy ending, but so many families have not had theirs.....please pray for the Mullens.

Random pics of the munchkin

2010-05-17T18:38:00.003-07:00

PLEASE PRAY FOR ABBY

2010-05-13T14:51:00.005-07:00

Hi Everyone! I will update about D later with some pics, but for now, we need prayer for Abby. I have been dreading writing this post, and have been hoping and praying that the situation would change so I would not have to write it. As you all know, we have grown to love Abby and her family very much. Last week we found out that Abby's leukemia is back in her bone marrow and it is stronger than ever. Usually, if it comes back after a transplant or a lot of chemo, it is a stronger disease. Her leukemia DOES NOT want to go away, even with all of the "BIG GUNS" that have been used to try to kill it. Last week, Abby had 3 doses of high potency chemo drugs that were supposed to knock out the leukemia long enough so that they could fight it with another drug. At first, it looked like the chemo worked and Abby's counts dropped just like they should have. Then two days ago, it started fighting back, and came back strong. They are doing 3 more doses of the chemo in hopes that it kills the remaining fighting cells. If this does not work.....then Abby's chances of surviving this horrible disease are not good. The original protocol was to do the 3 doses and then use another drug, called Interferon to 'encourage' Abby's grafted cells to fight. They cannot move onto the Interferon drug until the Leukemia has been knocked out.....and it is NOT going away easily. PLEASE PLEASE PLEASE pray for this amazing family. Mom-Jennifer, Dad-Jon, Sister-Alyssa(5), and Abby, who is 16 months old. There are no words to describe how it feels to fight for your child's life....and to be losing that battle. Abby is such a beautiful little girl, with a bright smile, and tons of personality....and it's hard to imagine the world without her. This is going to be a very tough couple of weeks as Jennifer and Jon fight this Leukemia harder than they ever have before. We are going down to Tucson tomorrow for a clinic visit and will be able to spend some time with them. I will hopefully be able to get some cute pictures of Dylan and Abby together and try to capture their unique bond.....she just lights up every time she sees Dylan. Please pray for Jennifer and Jon to get some much needed sleep and clear minds as they will be having to make some very difficult decisions regarding Abby's treatment. At this point, they are willing to do whatever it takes. My heart is so burdened with pain for them, because I can imagine being in that same spot. When I even think of this happening to D, every fiber of my being aches and cringes....it's an all too familiar situation. Please pray for them. If you would like to follow along with their journey, I will be updating their caringbridge site regularly. http://www.caringbridge.org/visit/abbymullen

Thank you for your prayers and support! We love you all!

The Praskins

Birthday Celebration!

2010-04-24T20:50:00.005-07:00

Hello everyone!! Thank you to all of you who helped make Dylan's birthday celebration SPECIAL!! We really enjoyed being able to see everyone! Dylan was a little less than happy that day...he was a little cranky....but we still had a lot of fun! As you can see in one of the pics, he fell asleep for most of the party :) He also cried, a lot, when we sang Happy Birthday :( Maybe he will enjoy his 2ND birthday a little more! Nonetheless, a good time was had by all and we were blessed by everyone who joined us for the celebration!! Dylan was also blessed with enough presents to last him for AT LEAST the next year!! I was overwhelmed with the outpouring of gifts--THANK YOU!! You guys definitely spoiled him :) If anyone has any pictures from the day, please email them to me, I would love to have them!

We love you!! Have a great weekend!

Love, The Praskins

Day +116....never a dull moment around here

2010-04-15T21:55:00.003-07:00

Hello!! Well, we saw a specialist on Monday and he verified that Dylan definitely had glaucoma. The only problem was that he could not check the pressure in D's eyes because he is a wiggle worm :) So we scheduled an appointment to get the pressure tested under anesthesia. That brings us to today. I DREAD anesthesia days. They are not fun, especially for Dylan. But, he was a trooper as always, and did VERY well with not eating for 6 hours. He really does make me so proud :) After checking the pressure in Dylan's eye, along with examining it, the doctor found some major concerns. Dylan's glaucoma is bad. He said that his right optic nerve is severely damaged. He told us that it like his eyeball is a computer and his optic nerve is the computer cord. He can have a perfectly functioning computer, but if the power cord is damaged or broken, then the computer cannot function properly. Dylan's "cord" is not doing so well. His left optic nerve is also damaged, but just not as badly. We now have D on two sets of drops. These drops minimize the pressure that is in his eye and will hopefully bring it down below normal levels so we can avoid surgery. There is no way to tell how his damaged nerves are going to affect his eye sight just yet. Only time will tell. The doc said that we will not know the extent of damage until Dylan is 3 or 4 years old. Most of the time, the most damage is done to the eyes peripheral vision. One good thing is that in some cases, the damage can be slightly reversed with treatment. THIS IS OUR PRAYER! Please pray that the drops are sufficient enough to bring down the pressure and that his optic nerves have a chance to re-coop and get strong. In cases where adults get glaucoma, the damage is irreversible....but kids are a whole other story, and for this, we are truly thankful!! We are not going to stress out about things that are beyond our control-I HAVE NO CONTROL!! (I have to repeat this to myself quite often! ha!) We are trusting that the Lord is going to keep D in His arms and will take care of him. On a GREAT note, we also went to Tucson for Dylan's monthly appointment on Wednesday! ALL GOOD NEWS!! All of his levels are great and there are no red flags.............YAY FOR GOOD REPORTS!! They had a little birthday party for him at the clinic and he was able to see his girlfriend Abby!! Abby is doing really well now too! She went through 10 sessions of radiation and it killed all of the intruding cancer cells! Now she is under strict watch to make sure they do not try to come back and make a home in her cute little body. She LOVES Dylan! It is quite hilarious!! She will do anything to touch him, grab him, or squeeze him! I love seeing those two together! LIFE is such a blessing, and when I see Dylan and Abby together, it is just an amazing picture of what God can do! AMAZING! Two little ones who, statistically, were not expected to be here today.........God is AWESOME!
Tomorrow, our little guy is going to be 1!! Is that even possible? Although there were days this year that seemed like they lasted a month....this year has really flown by! To think that one year ago today, I was on my way to my 36 week appointment with Erik.....only to find out that we were going to meet our little boy in less than 24 hours........WOW! He is such a blessing and has changed our lives FOREVER!! Thank you for your continued prayers and support. You guys are an amazing support group and we are forever thankful for you for journeying with us! And just when we think everything is going to be smooth sailing....SURPRISE!! The journey is not over yet! I hope everyone has an amazing weekend and we look forward to seeing everyone at Dylan's birthday bash on Sunday!! We love you!

Loving life, no matter what the obstacles,
The Praskins

Day +211....a little bump in the road

2010-04-10T20:03:00.002-07:00

Hey guys! These are always the posts that I do not like writing; bad news posts. This past week Dylan's eyes have been 'leaking' almost all day long. This has been something that we were used to, but it seemed to get worse this week. Along with the extra tears, came redness in his eyes. We attributed these symptoms to allergies, because it seemed like everyone's allergies were out of control. Then, yesterday, his left eye seemed to get worse....really red. I put him down for his afternoon nap hoping that it would go away a little bit and tried not to make a big deal of it. When he woke up, it was worse. I called Dr. G and told him about the redness. I only got worried because that is how Abby's leukemia came back. And it started as a redness in her eye. He told me to try to get an emergency appointment, just in case anything was going on, but he did not think that it could be anything bad. I called down to the pediatric opthomologist and told them about D's past with cancer and they promptly got me to see the doc for the last appointment. I really believe that the Lord gives mothers an intuition that only he could give. Before his nap that day, I was not really worried or even too alarmed at his red eye. But then everything changed...and I FREAKED OUT! And I know that was at God's prompting...maybe NOT the freaking out, but the wisdom to get him checked that day!
When we got to the doctor, we had no idea what he was going to find. These days, we never know what is going to happen. The only words we were yearning to hear was....ITS NOT CANCER. After his examination, he had a very concerned look on his face and I held back the tears as much as I could, even though they were already streaming down my face as kissed Dylan's head over and over. Then the words came, "It's NOT the Leukemia!"....PRAISE GOD!!! Well, if it was not the leukemia, then what WAS it? Why was he so concerned? He then began to tell us that he believes that Dylan has Glaucoma, and severe nearsightedness. Glaucoma?? I never even knew kids could get that! Glaucoma is caused from pressure in the eye, causing it to swell. He described Dylan's eye as a tire that has been pumped up to the max. If it goes untreated or is caught too late, then it can cause blindness and also severe nerve damage. We are still unsure if Dylan has had this from birth, or if it is a side effect of the steroids he has been on for 7 months. The steroids can cause the eye to swell, but he has been on very small amounts for the past 2 months, so they do not know if that is causing it. The doctor that saw us was not a glaucoma specialist and he did not have the tools to measure the pressure in his eye, but he was convinced by what he saw and Dylan's symptoms that glaucoma is the diagnosis. We are going to see a specialist this week and will hopefully be able to get some more information on what we need to do to help Dylan. They may have to put him under anesthesia (nothing new to D) in order to get the measurements they need, and get a final diagnosis. At this time, nothing is for certain and we do not know specifics. We hope to get more answers this week. Please pray for us as this is just another setback in our efforts to "live a normal life". We know that the Lord has a plan in everything, and He is leading us and with us, on every step of our journey. Please pray for our family as we take this little detour on our road to recovery. It is hard not to think ahead of what 'could happen' or 'worst case scenarios'. We need to focus on today, knowing that God will take care of tomorrow. Please pray for baby D that he is not in any pain or discomfort. We thank you all for continuing this journey with us and we will update as soon as we find out any new information! We love you guys! Oh, and one more thing.....Dylan is going to be a year old next friday!! CRAZY!! We are so excited to celebrate with everyone!

Walking by faith,
The Praskins

Come and Celebrate with Us! Our little MIRACLE is turning 1!

2010-03-26T09:38:00.005-07:00

We are celebrating LIFE, and everyone is invited!

WHEN: Sunday, April 18th

WHERE: Marley Park Heritage Club15120 W Sweetwater AveSurprise AZ 85379

TIME: Open House from 1:30-4:30

We hope to see you there!

Please RSVP to Michelle at mishy1225@aol.com

Dylan....with 'No Strings Attatched'

2010-03-15T22:50:00.003-07:00

Clever little title right? I have to give the credit to Mandy, my little sister, she came up with it and I love it! The pictures are a little out of order, but the ones below are from Friday just before getting his line out and after. And the smiley ones are all after we got home! He is such a happy boy! I think in some sense, he knows what he has been through and is happy to be alive! ENJOY!

DAY +185.....6 months of REMISSION!

2010-03-15T21:33:00.008-07:00

Hello everyone! Dylan has now been in remission for 6 months and is LEUKEMIA FREE!! We are not out of the woods yet, as they will not consider him cured until 12 months of being in remission, but we are out of the danger zone.
This past Thursday was an emotional day to say the least. This may be a little long, but I want to give you a glimpse into our crazy day. Here it goes--
As I drove down to Tucson late Wednesday night with my mom, we talked through some of our fears and thoughts about the upcoming events. Is the cancer gone? Has he relapsed? What would the bone marrow test tell us? It was one of the hardest nights of sleep I have had in a long time. I had to pray and give the Lord all of my fears, and all of my hopes....however, I knew that whatever the outcome of the following day...that the Lord would still be there.
Dylan and his little girlfriend, Abby, were both getting the same procedures done that day, and going through the same process; a bone marrow aspiration and a spinal tap to check for Leukemia. Dylan's last meal was at 2am. We thought that we would be going in for D's procedure at 7:30am and we did not end up getting called down until 12:30pm......and that was a long and dreadful morning with Dylan not being able to eat. He got his first taste of apple juice that morning because he could have clear liquids until 9:30--and he really enjoyed it! But soon, he wanted the real stuff. We tried every little thing to make him smile. The child life specialist pulled out every toy she had, every noise maker, and light-up gadget. Bubbles helped for about 5 minutes and a blown up surgical glove even kept him entertained. He was definitely a trooper! Finally, they came to get him for his spinal tap and bone marrow aspiration...that is when the nerves set in. More waiting. Oh, how I love the waiting! The procedure went well and we headed back up to clinic to wait for the results. MORE WAITING! Dylan had a hard time coming out of the anesthesia and was quite hungry and tired...so we just cuddled him as much as possible. Then Dr Graham lets us know that he is going down to check the results of the tests.......AND more waiting!! 30 minutes later he walks into the room, and he is not showing any emotion. The spinal fluid was clear and no cancer cells were present. He then explains to us that the samples from the bone marrow show tiny new cells that looked like new growth, but COULD be leukemia cells. I tried as hard as I could not to freak out. I wanted to cry, I wanted to scream, but I stayed quiet. He said that the pathologist thought they were Leukemia cells and that a senior pathologist would look at the sample within the next couple of hours and that he would call us to let us know what they thought. MORE WAITING. We were just about to leave to go back to our hotel, when the nurse walked in and said that Dr. Graham was on the phone and wanted to talk to me. I told her that I did not want to talk to him-half joking, but mostly in fear of what he COULD tell me. I was shaking when I picked up the phone, knowing that our life could be turned upside down once again. He proceeded to tell me that the senior pathologist looked at the sample and had no question about the origin of the cells--THEY WERE HEALTHY NEW CELLS..........I felt like I could not breathe! I could not even talk because I was crying so much! Praise GOD!!! I hung up the phone and cried out of pure joy hugging my mom and Dylan. We left the hospital rejoicing with our wonderful news and talked about all of the miracles that God has done in Dylan's life. Later that night, Jennifer, Abby's mom, got a call too. Her news was not good. Abby's leukemia was back. She called me that night crying and I cried with her. It was heartbreaking. It was a day of rejoicing and exciting news with Dylan, but a night of sadness knowing that my dear friend and her precious daughter were entering a world of the unknown. Stupid cancer. I hate cancer. It was hard not to feel guilty about Dylan being healthy. And not really guilty, but sad to be excited when they were hurting. I think I hugged Dylan harder and longer than I ever had that night. I cried as I prayed, thanking God for healing our baby, and begging for Him to heal Abby and to carry the family through this next stage in their journey.
Please pray for Abby and her family. Jennifer and her husband John are stressed, afraid of the unknown, and they are weary. Please pray that the Lord gives them the strength to get through each day and that they feel His presence and His loving arms around them. Thank you so much for your diligent prayers for Dylan. Words cannot express how thankful we are for your support. Please continue to pray that his body heals completely. We had his last line taken out on Friday and he is now a 'normal' little boy. He is still on steroids and another med to help his tummy, but we are hoping to decrease these throughout the month. Pray for us to be confident and trust the Lord with Dylan in every little detail. The fear of the Leukemia coming back is always lingering. A fear that is NOT from God. We are now going to Tucson for check ups only once a month! YAY! Isn't that exciting? I am glad that we can still get to visit with our Tucson friends and for Dylan and Abby to see other. Abby loves Dylan. She always tries to grab his chubby cheeks and always wants to kiss him! But Dr. G always says, "no licking, no touching, no kissing!" HA! I love the way babies react to one another!
In other news--I am going to be sending out an E-VITE for Dylan's party and also will post all of the info on the blog. If you would like an E-VITE, please email me so I have your email address and I will be sure to get one to you! :) Send emails to mishy1225@aol.com. As a reminder, the party will be on Sunday, April 18th from 1:30-4:30, open house style--so you are welcome to stop by or stay as long as you want! We would love to see all of the people who have supported us and Dylan would love to see you too!! I am hoping to keep him awake the whole time! HA!
Thank you again for EVERYTHING! You guys are AMAZING!

Loving life and cherishing every moment,
The Praskins

More Bone Marrow Testing Today!

2010-03-11T17:07:00.002-07:00

Baby D had a bone marrow test today in Tucson before he gets his broviac out tomorrow. The original result was that the pathologist was not clear if some of the cells were 'new healthy cells' or the beginning of leaukemia cells. After a long stressful wait, a senior pathologist reviewed the results and confirmed that the cells were 'healthy baby cells.' Yeah! What a relief! We are so excited and thankful to God that Dylan is continuing his great progress! Thank you for your prayers. Your support and encouragement has been so uplifting. We are looking forward to Dylan's broviac being removed tomorrow so he won't yank it out! We will update more as we hear!
Love
Erik, Michelle, & Baby D

Day +171.....So Thankful for our Dylan

2010-03-01T22:36:00.005-07:00

Hello Everyone!! Sorry that I have not updated in a while.....but as I always say....no news is GREAT news! Things have been abnormally normal around here....sounds kind of strange....but we are pretty much starting from scratch of what normal should be. It's nice. It's a great thing not being in the hospital. It's a great being in our home. Sleeping in the same house all together. Cleaning. Grocery Shopping. Laundry. Normal....I LOVE IT!!

But as we are back to normal, many of our friends in the BMT world are not. As you all know, we have made a lot of friends along our journey, and some of them are having happy endings, some have had bad, and some....are still struggling to make it. I would love for you guys all to pray for Bekah....she is 5. She has a different diagnosis than Dylan, but underwent a BMT about a month after Dylan. She and her family have had a tough weekend to say the least. There were many times where she could have lost her life this weekend, but God has really protected her. She is now on life support in the PICU, and is fighting for her life. I have gotten to know her mom, Sharla, pretty well, and she is an AMAZING warrior for her daughter. PLEASE pray for this family. They are frightened by what COULD happen, but also have FAITH in the Lord and believe that He can bring Bekah to full recovery. Please pray along with us for this sweet girl. Here is her caringbridge site if you would like to follow along with us:

http://www.caringbridge.org/visit/prayersforbekah

Thank you in advance for your prayers!!

Ok, so it's kind of hard to transition out of that, but I am going to try. I was texting back and forth with Bekah's mom this weekend, and while they are going through this devastatingly emotional time, she asked about D, and how he was doing. She is always so excited to see him doing so well, even when her world is falling apart. That is just the kind of person she is.....amazing!

Soooooooo.......Mr. Dylan is doing better than I could have ever hoped. He is perfect. And I know that every parent thinks that their kids are amazing.....but seriously, I don't know if my heart can take any more love for this child. Every morning, (as long as it is after 6am), I get soooooo excited to walk in his room to see that huge smile of his. I usually stand by the door for a minute or two and just watch him. Then, the second I say "Dylan", he starts bouncing around and looking every which way to find me........melts my heart every time!! God is so good. I am reminded of the miracle that God has given us every time I look at him. You guys must think I am crazy, and that I must cry all the time....and I DO....not ashamed of it. It's all still a little hard to believe sometimes. When I look back at the horrible pictures of that day, it brings back that sinking feeling in my gut....and in a way, I don't ever want that feeling to go away. I do not want to go back to the person that I used to be. I don't want to take life for granted. Take my loved ones for granted. Dylan is my reminder, and always will be. I do believe that God sometimes gives us trials in our lives to test our faith, and to show us that we are nothing without Him. He needed to break down Erik and I to show us what life was really about. We are thankful for this trial. And even as I type this, I am fearful to say that knowing that I still have no control of the future....but I can, with confidence, say that I know that I can get through anything with Christ by my side.

THE PLAN: The next step going forward is to take out his line and do another bone marrow biopsy. These procedures are scheduled for March 11th and 12th. My mom (THANKS MOM!)is going to join us for the trek down to Tucson and we will stay 2 nights. On Thursday morning, they will do a bone marrow biopsy to double/triple/quadruple check that there are NO signs of the Leukemia cells coming back. Although the doctors believe that there will be NO cancer, they just want to make sure before taking out the line. PLEASE PLEASE PLEASE pray with us, that there are no signs, whatsoever, of any bad cells, and that the biopsy shows perfectly healthy, grafted cells. As long as all goes well on Thursday, and it will :) , Dylan will be put under anesthesia once again (and hopefully the last time), and they will go in and remove his last broviac line...........I cannot even begin to express my excitement for this!! It makes me giddy!! No longer will I have that reminder of the cancer that once permeated his poor little body.....one less thing to worry about!! YAY!! YAY! YAY!! Did I say YAY?! As with any procedures or any time he is put under anesthesia, complications can and do sometimes arise. Please pray that there are NO complications, and that everything goes as smoothly as possible. Please also pray that Dylan does not have any side effects from the anesthesia....he has been put under so many times, I have lost count. That is so sad. It makes my heart heavy. He is not usually a happy camper once he wakes up, and that is to be expected, but please pray that he does not throw up and that he can recover quickly from the procedures. After all is said and done, we should be down to one.....yes, one, visit a MONTH!! WOW!! I have been waiting for this day for a long time! I CANNOT WAIT!!! :)

Thank you to all of you who have continued to walk with us on this journey that we call our life.......your faithfulness, your support, and your prayers have been such an encouragement to us!! You are amazing!! We went to an awards ceremony last week for the "Light the Night" walk that we attended back in November. Our group, Dylan's Dream Team, won the "Most Feet" award! We had 137 walkers!! WOW!! Thank you to all of you who were able to come and support us that night!! I cannot wait until next year when Dylan will be walking with us!! Won't that be amazing? Mark your calendars for November 6th....we are hoping to have as many friends and family join us as possible to support this great cause! (SIDE NOTE: The pic of D with the Diamondbacks Mascot Baxter was from the awards ceremony, and although most kids would cry when they saw Baxter, Dylan was completely opposite! He was loving the huge furry creature and was caressing his face! It was hilarious!! Enjoy the pics!! )

Running the Race that God has set before us,

The Praskins

Day +155....our baby is GROWING!!....and fast!

2010-02-13T19:10:00.003-07:00

Hello everyone!! HAPPY VALENTINES DAY!! Erik and I celebrated 5 years of marriage on the 12th....wow, time flies!! We know that if the Lord can bring us through this past year as a stronger couple, then He can and will, get us through anything!!

Life in the Praskins household is busy.....and so much fun!! We are beyond blessed with Dylan, and each day is a great adventure! Dylan is growing like a weed! He is now almost 16 pounds (huge jump, he has been 15 pounds for what seems like forever!), and is eating twice as much as he was two weeks ago. This may seem like a normal behavior for a 10 month old, but for Dylan, it is a huge step and an answer to prayer! He has been eating only 2 ounces at a time for the past 6 months....he is now eating 4 ounces with each bottle, and sometimes wants to eat an hour later. It's like he is a teenage boy! We have also been trying some baby food the past couple of weeks, and so far, so good! He is growing right before our eyes! He no longer looks like a weak, sickly, little baby, and more like a chubby, vibrant, little boy! PRAISE GOD!! He looks healthier and seems to get happier and more smiley everyday!! (if that is even possible). He is a master at rolling over now, and enjoys hanging out on his blanket, playing with his toys. He is also holding his bottle now!! YAYAYAYAYAYAYAY!! This may be my favorite milestone! HA!! We are continuing to work on his sitting up skills, and hope to master that by the end of the month. This is one of our short term goals. I also won't be surprised if he is crawling within the next month. He is catching up by leaps and bounds, and is one determined little guy. His hair is blond, soft, and beautiful......it's funny how much I love his hair......I guess it just reminds me of the new life that God has blessed him with. When he went through his 3rd round of chemo, he lost all of his hair.....even eyelashes and eyebrows.....and although he was still adorable, it was heartbreaking knowing what the meds were doing to him. But now, the new blood has created new life in his cells and those cells are working magnificently! God could have healed Dylan in a second, but instead, He chose to use modern medicine.....it simply amazes me!

On the medical aspect of things, D is doing as well as he can be. We are now 1 MONTH away from Dylan being in remission for 6 months! This is a huge milestone in his treatment, and we are very excited about his progress. If all continues as planned, we will be dropping half of his meds by mid march and also taking out his last Broviac line! WOW!! I WILL NOT MISS THAT THING!! Dylan loves to yank on it and I will not miss worrying about him pulling it out of his chest. He will also be able to take normal baths and be able to be completely immersed in water....something we have not done in 8 months! I cannot wait to take him in the pool this summer....he is going to LOVE it! After some consideration from the Dr., he has decided not to place a port-a-cath in as a replacement for the Broviac....this means that Dylan will not have ANY foreign thing in his body anymore! I cannot even begin to tell you how happy that makes us. The Doc decided that Dylan does not need any more scars, any more surgeries, or any more hassles.......I love our Dr! After next month, Dylan will only need to get his blood drawn once a month, so they will just have to put in an IV at that time. The Dr said that he is still at the age where he will forgive and forget.......so that is a good thing. It's horrible hearing the little kids screaming and crying before the nurses even get to them with the needle. One of the greatest things that I am thankful for, is Dylan's age. He will not remember ANYTHING, and that in itself, is a HUGE blessing.

We are still waiting to see if Dylan qualified for the state insurance. We had a representative come to the house and ask me a bunch of questions regarding his development, and based on that, he did not qualify. His case is now going through a physician review. We know that if he is not approved, then God will provide another way, but we are still praying for it! I guess it is not a bad thing if he is catching up too fast developmentally....just hard to get approved for services!

We are going to be having a BIG BIRTHDAY BASH for Dylan for his 1st birthday, so mark your calanders!! Normally, we would not go all-out for a 1st birthday party, but this is a one of a kind celebration!! We are going to be having a party on Sunday, April 18th, at our Marley Park community clubhouse in Surprise.......more details to come later! If you can, please plan on stopping by to celebrate Dylan's life with us--we would love to see you!! I think the hardest part of the party will be keeping the birthday boy awake!!

Well, that is all for now, enjoy the pics, and as always, thank you for your amazing support and prayers!!

Living to glorify God in all we do,

The Praskins

Day +142.......living life, and enjoying every minute!!

2010-01-31T20:41:00.008-07:00

HAPPY BOY!!

ABOUT PICS: Bath time is his FAVORITE time! He loves, loves, loves to splash around and get as much water out of the sink as he can!! He also loves to stick his feet in his mouth any chance he gets...even in the bathtub! The pirate pic is from a birthday party that we went to of a friend of ours, and he really liked looking at everyone in the silly hats. And my favorite pic is the one of him in his stroller with his "old man" hat on.....sooooo cute!! (Erik thinks he looks like a little Indiana Jones)

Hey guys!! We are doing soooooooo well!! We had a great few days in San Diego! We were able to visit the zoo and also Sea World, and also saw some family and a few friends. Dylan did really well on the drive there and on the way back, we drove at night, and he slept the whole time. He is such a trooper! Although he really did not seem too interested in many things at the zoo or Sea World, he did enjoy seeing all of the seagulls chasing after us, trying to get our food! He thought they were pretty funny! We hope to have a longer trip later, but we were very thankful for this time to get away.

We went to clinic this past Friday and received only good reports! PRAISE GOD!! It's so nice to consistently hear good news. I even talked the doctor into letting us have a whole week off!! We will be going next Monday, and hopefully we might be able to switch to going every other week. That would be AMAZING!! Friday, we also celebrated Abby's 1st birthday in the clinic. I did not get any pics because I was video taping her and Dylan together....but it was so cute!! She was covered in cake and icing, and when we sat Dylan next to her, she kept grabbing his cheeks! They are so much fun to watch when they are together. I love the way babies react when they are around other little ones their age. She is doing really well post-transplant and she is looking more vibrant every week we see her!! God has been so good to us, and its a huge blessing for us to see our good friends doing well too!!

In other news.....we were in the local paper!! A friend from church writes for our city paper and was doing an article on organ donors and blood/marrow donors and she was able to use Dylan's story for the article. We made the front page!! As far as I know, the article was circulated in the Surprise Independent, and also in the Arrowhead area. Just another way that God is using Dylan to reach out to others! AWESOME!! Another thing we are doing is setting up a link on AMAZON.com that will allow Dylan to get 4% of proceeds that come from people shopping on our link. I will try to get it set up this week....so if you are planning on shopping on Amazon.....hold off until we get our link set up!! Every little bit helps!!

We are hoping to get a confirmation this week on whether or not Dylan will get the state insurance.....please keep that issue in your prayers. We will be paying for our first month of COBRA this month....and hopefully it will be the last!!

Last, but not least............DYLAN IS OFFICIALLY ROLLING OVER!!! YAY!!! He has been doing it the past week when he is in his bed, but NEVER when I could see him! But yesterday and today, he has been showing off a lot and gets really excited when he rolls onto his tummy! He is a constant joy in our lives and we are so very excited to wake up with him each and every day!! Thank you all for your continued prayers and support....you are AMAZING!!

With love from our home to yours,

The Praskins

Day +132....what a funny little kid!

2010-01-21T14:14:00.007-07:00

Ok, I am probably a tiny bit biased, but isn't he the CUTEST?!! He is full of so much personality!! Must take after his momma! HA!! This was one little photo session where he was proud to show off for the camera! We are doing good here at home and having new adventures everyday! He now has the spitting down pat, and is now working on puckering his lips....it is so funny! I think he like the sound it makes and of course the reaction that he gets from his admirers. I never know if he is going to do a fishy kiss or spit something at me....what fun!! As you can see in the pictures, he is growing A LOT of blond hair, and he is getting some chub on his legs to match his chubby cheeks!! His little arms are now little sausages too! I LOVE IT!! He is finally getting some fat on him that is real fat and not just him being bloated from too many fluids. His cheeks have started to dwindle due to his steroids being cut down, but as of our last Tucson visit on Tuesday, the steroids have been increased to help counteract his throwing up.....and so far it is working!! So I guess we will not be saying farewell to the huge cheeks anytime soon :) He has been doing really well apart from the throwing up. He is happy, playful, and such a good baby!! People always say that if your first baby is a good baby, then your second may be a handful or visa versa. Well....I was having a talk with God and asked if He could classify Dylan in the "handful" category, even though he is REALLY good....so we will see! Ha!! He has not been sleeping as well as before at night, and I think that was due, in part, to his throwing up and dwindled eating. Now that his steroids have been increased, he has been eating more,keeping it down, and sleeping almost through the night! The past two nights he has only woken up once, around 2am, to eat.....opposed to the 8+ times he has been up during the night the past week! I am VERY thankful for that!!

Please pray for me as I am always on edge about every little thing. I got scared a couple of times last week, because a few days he started to act different, he was throwing up a lot, and his stools looked strange.......all of these things freaked me out, and I assumed the worst! When we got to the clinic on Tuesday, I anxiously waited for his blood results.........and they were PERFECT. The Dr and Susan (our nurse) told me to stop worrying and that he was fine.......but I get scared. I am constantly looking for any little thing out of the ordinary that may show signs of my worst nightmare. I have to trust that God is in control and that my worrying will not do anything to help anyone. I need to focus on what is real and true at this moment, and not to focus on what could happen....this is a very difficult thing for me, so I would appreciate any prayers for this issue. There is a commercial on TV, I think it's for an insurance company, and it shows a little boy getting out of his minivan and he is going to soccer practice....his mom has him dressed in head to toe gear for protection.......it's a funny commercial, but that's how I feel with Dylan and I do not want to live in fear like that. Does this ever get any easier? :(

Last week Dylan had an evaluation done by the state to see if he qualified for physical therapy and developmental therapy. According to the specialists who "played" with him, he is more than 50% delayed developmentally and physically. This did not come as a surprise to us. I am not too worried about it, because if they would have evaluated him even a month ago, his delays would have been even more severe. He is catching up on his own time and enjoying feeling good in the meantime. Because of these delays, he qualifies for a program called DDD that will provide therapists once a week whether our insurance pays for it or not. Also, because he is qualified for DDD, this may also qualify him for government insurance. He has to get one more evaluation in the next couple of weeks, and then we will know for sure. But according to what we know so far, he is qualified! Praise GOD!! This is a huge praise and answer to prayer....because insurance is a HUGE expense. Please pray that everything goes well and that he will be able to be covered under the government insurance. That way, Erik and I can get our own insurance and not have to worry about having all of Dylan's expenses covered.

We were hoping to be in San Diego today, but God decided that we needed some rain instead :) So our trip is going to be postponed a few days. We are hoping to leave on Saturday and enjoy at least 2 sunny days in San Diego. It is a long overdue vacation and we are looking forward to just getting away for a short trip! Please pray that the roads are safe on our trip and that we do not run into any crazy weather!!

Loving life and thankful for every minute,

The Praskins Family

Day +121.....life is GREAT!

2010-01-10T18:04:00.004-07:00

Hello Everyone!! Life is good!! Erik and I have decided that it is best for Dylan, and our family, that I stay home for the time being--so I will not be returning to work. We are excited that we are able to make this move, but also taking a leap of faith. Our insurance was through my work, and now we will be on COBRA, and the insurance premium is going from $400 to $1500. We are still trying to find other avenues of insurance under our business, but we want to make sure that Dylan is 100% covered during his recovery time. We know that God will provide one way or another....and we feel that it is best for all of us that I stay home and take care of Dylan. I am really excited to have this opportunity and am so very thankful that the Lord has provided for us thus far. We are all settled in at home and are beggining to build a daily schedule. Ahhhh....schedules....I LOVE THEM!! Dylan has been sleeping in his crib for the past 10 days!! And he is doing really well!! He is still only eating 2-3 ounces at a time, so he is not sleeping through the night yet, but that will come with time. The sooner the better....becasue I AM TIRED. He is even taking his naps in his crib now and loves to go to bed....AWESOME little guy!!

We are headed to Tucson tomorrow for our weekly visit. We are hoping to go down to two visits a month soon--that will be nice!! We are also hoping to be done with his IV meds by the end of the month, and at that time, we will take out his other line and they will put in a port. The port will go underneath his skin and will act as an access to draw blood for his labs. Then there will no longer be a "fun" line for him to yank on whenever he is undressed....he LOVES to play with his line! Also, we will be able to fully submerge him in the bathtub, and when the weather gets warmer, the pool! I cannot wait to see how much he will like the pool. He LOVES LOVES LOVES his bathtime, so I'm sure he will love a HUGE pool! So many things for him to experience.....and I cannot wait to try them all!

He is getting an evaluation on Wednesday by a developmental specialist, and also a speech therapist. They are doing the evaluation to see if he qualifies for early intervention therapy programs from the state. He may also qualify for state insurance if they feel that his physical development is delayed as per their standards. This could be the way God provides.......and if not, He will another way. (BUT THAT WOULD BE AWESOME!!) So please keep us in your prayers on Wednesday morning. Dylan has been growing more and more each day. He is always showing us something new! His new favorite thing to do is to shake his head back and forth as if he is saying NO. Daddy taught him this one afternoon and now he thinks he is hilarious!! It is quite funny!! The other thing that he discovered is that he can make noises with his spit. YES, he puckers his lips together and blows out anything that is in his mouth....mainly his meds!! But he will also do it when he is just laying down and playing....he really likes the sound! His two teeth that are coming in on the bottom are still making their way through. It seems as though they are close to breaking ground, but they are still hiding underneath his gums. Maybe next week! His hair is growing A LOT!! It is really blonde and very soft!! I love it!! I love to just smell his head....yes, I know I am strange!! He is full of personality and smiles, and every day brings us a new adventure! We are enjoying every minute with him and being home as a family. Thank you so much to everyone who is diligently praying for us every single day, you guys are AWESOME!!

Until next time,

Michelle

Christmas 2009 Pictures

2009-12-30T18:19:00.004-07:00

Day +110.....movin and a'groovin

2009-12-30T17:49:00.005-07:00

Hey guys!! MERRY CHRISTMAS and HAPPY NEW YEAR!! So sorry that I have not updated anything in a while. Just know that NO NEWS, is GOOD NEWS!!! We had an amazing Christmas (and I am now 29!! YIKES)....and our best gift of all was our baby boy!! I was watching a sappy Christmas movie, and just looked at Dylan and started bawling. The poor boy could probably hardly breathe because I was hugging him so tightly. He is such a HUGE blessing and I cannot express how happy we are to have him here. During this past week, we have been able to spend a lot of time with family on both sides, and even made it up to Flagstaff for a few days, where we celebrated Christmas with my immediate family at my sister's house. There was A LOT of snow, and it was FREEEEEEEZING....so we opted to enjoy the snow from the inside of the house!! It was beautiful to look at!! Our dog, Lily, came with us, and she LOVES the snow!! She was in heaven running around my sisters huge backyard full of snow!! She is a crazy dog!! We also were able to enjoy watching some silly squirrels fight over walnuts that my sister was feeding them. Who needs a TV when there is wildlife entertaining you?? During the summer, she also has chipmunks that join in on the fun! So cute!!

Dylan is doing really well! We went down to Tucson for clinic yesterday and all of his levels are great!! We are now down to one day a week for clinic visits, so we are very happy about that! Most of D's meds are oral now....and now, his tummy does not want to cooperate. For the past week, he has been throwing up his meds, almost immediately, and his tummy does not like it! We are trying to move around some meds and also give him a few more IV injections of Reglan that are supposed to help him empty his tummy. The Doc says that most babies have some sort of reflux....and babies that have been through chemo like D, have a VERY bad problem with reflux. This could be an issue for a few years until his tummy heals completely and matures more. Please pray that he can keep down his meds and that it does not hurt his little tummy anymore. Other than the throw-up issue....he is doing PHENOMENAL!!! He is SOOOOOOO happy! I have never seen a baby who smiles this much!! (besides his girlfriend Abby!) He is enjoying life and loves any attention that he can get!! He is now sitting on his own!! Well.....almost there!! He can balance by himself for about 5 minutes, and then he becomes a leaning tower of Dylan. He is trying though!! It is so much fun!! We also think he may be getting some teeth!! He takes his hand out of his mouth long enough to eat, and then it is right back where he likes it!! We think that he may have 2 bottom teeth making their way through....so we will see! He is STILL not sleeping very well at night....so fun for me! Ha!! But he still only eats 2 ounces at a time, so he wakes up often. The goal for next week is to get him out of the pack'n'play in our room, and get him into his crib. This is a hard step for me, because I have not been further than 6 feet away from him at night for 6 months, but it WILL be good for the both of us. Please keep us in prayer as it will be a tough transition. Pray that he starts to eat more and less frequently and that he will continue gaining weight. He has not gained a lot of weight since leaving the hospital, but it is not an issue at this point. He is now around 14 1/2 pounds and about 25 inches. He is a little guy! And he has the cutest tiny feet!! Almost the size of newborns!! I love to nibble on them! ha!! His site where his double line is all healed up and he now has a small scar. His single line is holding up well and will hopefully be out soon!! That will be SOOOOOOO nice!!

I think that is all that is new for now. I hope that someday, Dylan gets to meet everyone that has been praying for him and supporting him....you guys are AMAZING!! We love you and hope that 2010 brings you many blessings from the Lord.......we are going to have a FANTASTIC and PURPOSEFUL 2010!!

Walking by Faith,

The Praskins

Day +95....One broviac down and Leukemia FREE!!

2009-12-15T18:32:00.002-07:00

Praise God from whom all blessings flow!!

Today is a GREAT day!! The surgery went well and Dylan is a super trooper!! He did surprisingly well with not eating after 1am--he just wanted to hang out at 4am-so we have had a loooonnnngggg day. Dylan's double line was removed without any issues. He will have a little scar as a reminder of this crazy journey we have been on, and every time I see it, I will be reminded of God's miracles!! Even though I'm reminded of that every time I look at D!! He still has his single line and we will be taking that out in a month or so, depending on when we can go to all oral meds. His spinal tap results showed HEALTHY spinal fluid and his preliminary Bone Marrow results showed HEALTHY Bone Marrow--LEUKEMIA FREE!! We are so excited and relieved to get the good results!

It is a constant struggle to trust the Lord and not worry about his Leukemia coming back. He can still relapse at any time. Today I was reminded, yet again, that I CANNOT control any of this and I AM NOT in control of anything (even though I try!). God has been so good to us and has given Dylan a second chance at life! We will NEVER take that for granted!! None of us know how long we are going to live or are promised any amount of time here on earth-so I will CHERISH every second!! Even when D has me up all night, I will cherish the time I have with him. Dylan is doing phenomenal!! He continues to have great counts, all of his levels are good, and he is growing and thriving! What a blessing he is to us!! I still can't believe that it has been 6 months since he got diagnosed! Some days it felt like an eternity, but now, in the grand scheme of things, it was only a short time. During all of the hospital days, I had so many people tell me, 'This too shall pass'. And when they would say that, it would almost make me mad....because it felt like it would NEVER pass!! But guess what? It did!! The horrible days of crying all night and watching Dylan suffer are over!! Even as I write this I think, 'Well what if it comes back, what if the nightmare isn't over?' I know that IF the unimaginable were to happen, then God will still be here. He will carry us through as he has this whole time. He will never leave us or forsake us, and we can rest in that truth. Thank you for your prayers, your encouragement, and your support--we cannot thank you enough!!

***Reminder*** Hopekids will be hosting the Scottsdale Fantasy of Lights and a portion of the proceeds goes to support over 600 Hopekids, with Dylan being one of them! This is an amazing Christian organization that allows families to go to events that they would normally not be able to attend. The group is so supportive and wants each kid to live as normally as possible and they help us as parents stay sane in our otherwise crazy worlds!! You can go to Hopekids.org to find out more about this amazing organization!! Please join us on Dec 23rd or 30th at the Fantasy of Lights!! If you can't make it there one of those nights, please go and support the other kids that will be there. We still need some back-up volunteers for both nights, so if you are available, please let me know!

Love,
The Praskins

Day +93......Still Going Strong!!

2009-12-13T17:44:00.002-07:00

Hello everyone!! I cannot even begin to tell you how much fun we are having with Baby D!! HE IS SOOOOO MUCH FUN NOW!! He has begun to enjoy toys! He has never really cared for any toys before, but now, he wants to grab at everything....and once he gets a hold of it, the toy is in the mouth! He is sitting up really well in his bumbo and is building his core more and more everyday. We opened his little einsteins jumper, and he is loving it! He is still having a hard time sitting straight by himself, but loves all of the things to look at, and loves to bounce up and down on his feet. His little legs are getting stronger with each bounce! He is full of energy and is feeling really strong! We are beyond thankful and blessed with how he is doing.

We are off to Tucson tomorrow for two days. We will be having our normal appointment on Monday, and will be spending the night at The Ronald McDonald House on Monday night. Tuesday, Dylan is going to be getting one of his lines taken out!! YAYAYAY!!! The docs have decided that we no longer need all three lines, so we are going to be taking one out!! The plan for now is to take out the double line and leave the original single line in. While he is under anesthesia, they are also going to do a spinal tap to check his spinal fluid and also a bone marrow aspiration to check his bone marrow. They expect to find both his spinal fluid and bone marrow to be healthy, but there is always a chance of the leukemia to be in there. As you can probably imagine, this is very scary and we are praying like crazy that the results come out positive. Please, PLEASE, PLEASE, pray that the results are normal and healthy!! Please pray that he does well going under anesthesia, and that there are no unexpected surprises when they take out his line. Pray that he is not in too much pain after the procedure and that his line site will heal quickly.

We are just one step closer to being line-free and we are excited!! In a few more weeks, when he is completely off of his IV meds and they are all switched to oral, we will be taking out the last line. He then, will get a port-a-cath which is a central line placed under his skin. This will allow the doctors to draw blood on a weekly/monthly basis, without having to poke him everytime to put in an IV. I am really looking forward to the day where we do not have to worry about him yanking on his lines and pulling them out (I have had nightmares about it!!), and that he will be able to take normal baths and be a "normal", healthy, 8 month old!! Can you believe that he is almost 8 months old??!! It's crazy!! He is still the size of a 4 month old, but he will catch up quickly!! Anytime anyone asks how old he is, and I tell them, they are always confused because he is so small and does not move like an 8 month old. So instead of explaining his situation everytime, I might just start saying that he is 4 months old!! HA!! That would be easier :)

Thank you for all of your continued prayers!! You guys are AWESOME!! I hope you all have a wonderful week!! It's beginning to look A LOT like Christmas at our house.....and we are loving it!!

We love you all!!

Trusting God in everything,

Michelle

Scottsdale Festival of Lights 12/23 & 12/30

2009-12-10T11:35:00.006-07:00

Hello everyone!! Dylan and his friend Owen are going to be the Hopekids guests of honor at the Scottsdale Fantasy of Lights on December 23rd and 30th. Please come out and join in the fun and enjoy a beautiful display of lights. The cost is $15 per car, and for an extra $3, you can also get 3D glasses for everyone in the car (so bring the minivans!!) It is a great way to get out with the family and enjoy the Christmas lights display! For more information, go to--http://www.azfamily.com/good-morning-arizona/Holiday-Lights-Scottsdale-Fantasy-of-Lights-78863507.html

We also need 5 more volunteers for the night of the 30th to help direct traffic and greet people as they are coming in. If you are available that night and are interested in helping out for charity, please email Carrie Gauntt at wgauntt@cox.net and she can give you some more information. WE APPRECIATE ANYONE WHO CAN COME OUT AND HELP!!

Also, Owen's artwork was chosen by Phoenix Children's Hospital for their annual Christmas Cards!! There were only 7 chosen out of hundreds, so we are very proud of him!! Please go to pchkidsart.com to order cards. Every dollar goes back to Phx Childrens to help the kids!!

Merry Christmas to everyone and we hope to see you at the Fantasy of Lights !!

Day +86......We are HOME!!!

2009-12-06T23:13:00.002-07:00

Wow....after 6 months of living out of a suitcase, in and out of hospitals (mostly in)......WE ARE HOME!!! Of course, I am still living out of a suitcase....because I have not had time to unpack yet....but soon that will be fixed! We have thoroughly enjoyed these past few days at home and are looking forward to many more. We are now on a twice a week schedule for clinic visits. Unfortunately, the first one is tomorrow....so we will be on the road at 7am, heading for Tucson. The next clinic day will be Thursday, so we will have a couple of days off in between. We are going to try to have a family member or friend go with me every trip....just to help with the munchkin, and keep me company on the 5 hours of total driving.

We arrived home on Friday afternoon to a house decorated with balloons and bows welcoming home Dylan, along with our friendly neighbor Carrie and her kids! It was a nice home-coming and we hope it is our last!! Dylan is doing really well and is enjoying the "new house" and all of the fun, new things to stare at! Lily, our dog, is not so happy that D is back....but she will get used to it....she just gets a little jealous when Erik is holding D, and not cuddling with her--she is a little spoiled!! But she is a great dog and will soon get re-used to Dylan :)

Well, I better get to bed because I have a fun day ahead of me tomorrow!! I will be posting some info on some Christmas festivities....so stay tuned!!

Loving life and thankful for every moment,

The Praskins

Day +83......We are moving home!!

2009-12-03T07:15:00.012-07:00

Hello Everyone!! MERRY MERRY MERRY CHRISTMAS!! The Praskins Family is officially moving home!! YAYAYAYAYAYAYAYAYAY!! We got the go-ahead from the Doctor yesterday and will officially be down to two visits a week starting next week!! We are going to move home tomorrow after clinic!! We could not be any more excited or thankful for the opportunity to move back home after almost 6 months! There is nothing that beats the comfort of your own home! WOOOO HOOOOO!!!

Dylan is doing wonderful!! He is happy, smiley, and feeling good! He still has some issues with his blood pressure. Please pray that the medicines are able to control his blood pressure and that it does not get worse or cause any problems. His platelet counts are jumping by leaps and bounds and are at the high end of the "normal" range. His blood counts are steady and healthy, and his white count is stable. He still has a very weak immune system and we have to be really careful with him. If we go out in public, we have to go at times where it's the least crowded. Most of the time, we try to keep him in his car seat with a blanket covering him, but he does not like that too much. He wants to be out and staring at everything around him. He loves to look around and watch people. He will just stare at you, with his big blue eyes, and look at you like he is trying to figure you out. Then, the huge smile comes. I love his smiles! He is a smile machine. And not just a smirk, but a wide mouthed smile!! Oh, it is so amazing and fun!! He is also getting stronger everyday. He loves to kick and move around. He is now scooting himself around on the couch, the bed, and anywhere that his little legs can get traction!! He is holding himself up much better now too. He loves to sit up straight-with help, and just look around at everything. He LOVES to stand up on my lap. He thinks he is so cool when he is standing on his skinny little legs! He loves to make noises, and talk, and laugh.....most of the time he sounds like a little
Ewok! Ha!! So cute!! He is even growing some hair!! He has little fuzz all over his head!! At this point it looks dark blond....but we will see!! I cannot wait to see what each day brings!!

On the flip side of everything going well with Dylan, there are a lot of families going through some tough stuff. One family just found out that there little 3 year old has relapsed. The cancer is back, and it is more aggressive than ever. He is not expected to recover. Please pray for Colton and his family. He has 5 brothers and sisters. They are all headed to Disneyland today from the Make A Wish Foundation, to spend some much needed quality time! Pray for a miracle for little Colton....we all know God has no boundaries!! I know that God has us here for a reason, but it is so difficult to understand why God allows these things. Please pray for them. If you would like to follow their journey, please go to caringbridge.org/visit/coltoncowell

We know that God is healing Dylan and believe that he will be a healthy young boy in a year. When Dylan first got diagnosed, the first things I wanted to hear were stories of survivors. I wanted them to tell me that babies could survive Leukemia, and that he had a fighting chance. But the survivor stories were few, and the odds were stacked against us. Well Dylan is now a hero. A hero and a light of hope to other families who get their worlds turned upside down. I know that God has a plan for Dylan. Every time I stare into his big blue eyes, I am reminded of the miracle that God is doing in and through him. He has been an encouragement to so many people. We have received countless stories of how God has used Dylan to bring them closer to Him. How amazing!! Thank you Lord for using our precious Dylan to reach out to others!!

One of Dylan's little girlfriends is getting her bone marrow transplant tomorrow, on Friday. Her name is Abby....and she is a DOLL!! She is 10 months old and has the same type of Leukemia as Dylan. Please pray for her and her family, as this is the hardest part of the whole process. It is scary and exciting at the same time. Please pray for minimal side effects and a full recovery!! Pray that those stem cells go in and make their home quickly and that baby Abby will grow stronger everyday!! Here is her website if you would like to follow her journey caringbridge.org/visit/abbymullen

I will post some other kiddo's stories later....there are many!! I have a little munchkin fighting for my attention, so i better go for now :) Thank you all for all of your love and support!!

Pictures, Pictures, Pictures

2009-11-29T17:21:00.005-07:00

These are the awesome shirts and water bottles that were
donated for Dylan's walk!

Grandma and Auntie Karyna on Thanksgiving with cranky baby D

Day +79.....HAPPY THANKSGIVING!!

2009-11-29T16:20:00.005-07:00

Happy Thanksgiving!! We hope that you all had a wonderful time enjoying time with friends and family while enjoying yummy food and giving thanks for all of your blessings!!

After a week of throwing up, followed by 4 days of pure crankiness......we FINALLY have our happy boy back!! He was given a patch to help with his high blood pressure last week because he was not taking his medicine well, and it turns out that the patch does more for D than lower his blood pressure! It also makes him sleepy, hungry, and EXTREMELY cranky!! He did not quite enjoy his first Thanksgiving and pretty much slept or cried the whole day. We took the patch off the next day....and 12 hours later......Smiley D was back!! He woke up at 3 in the morning, and as I was changing his diaper, I caught a smile....I almost cried!! I was so excited!! And he has been happy ever since. Now that he is off of the patch, he is not eating as well or sleeping.....but I'll take smiles over sleep any day! Ha!!

We drove up from Tucson on Wednesday night and will be driving back tomorrow morning. We have really enjoyed our time being home and look forward to being able to move back permanently! We had a wonderful Thanksgiving with Erik's family on Thursday, some shopping with my sister on Friday, celebrated Thanksgiving with my family on Saturday, and are enjoying a relaxing Sunday at home before heading back. It was a jam-packed weekend, but also a lot of fun.

The plan is to go back to Tucson for the week. He will have another 3 clinic visits this week and then hopefully we can go down to 2 visits a week starting next week. If the doctor feels that Dylan is ok to visit only 2 times a week, then we will move home on Friday!! YAYAYAYAY!! Our lease to our condo is up on Friday also, so everything is working out well! We are soooooooooooooooooooooo excited to have an end in sight and be able to live at home as a family for the first time in over 5 months! 5 months!! It seems so crazy that it has been that long. The Lord has truly protected us so much over the past 5 months. We have so much to be thankful for this year.

It is easy sometimes to dwell on the negative things that are going on, and when I start to do that, I am brought back to the reality that my baby is ALIVE. He is here, with us, and we are able to celebrate this holiday season with him. God has been so good to us! Although our journey is not over yet, and we have a long way to go, we will cherish every moment with Dylan and be thankful for every second with him that God has blessed us with. I still have the daunting task of multiple meds 2 times a day, dressing changes, and the stress of staying ahead of the craziness........but we are COMING HOME!!!! YAY!! I cannot even begin to express how excited we are!! Please pray for us as we need to make some big decisions coming up regarding work and insurance. Our insurance is through my job, and I am only able to stay on LEAVE until Janurary 4th. I do not want to have to go back so early, but it is probably the only option we have right now. Our insurance costs will go up to $1500 monthly if I stay home. I have an amazing job waiting for me, along with my friends and co-workers, but I would much rather stay with Dylan for a little bit longer. He still needs a lot of attention and care, and it would be difficult to leave him at this point.

Thank you so much for all of your prayers and support!! We are thankful for such amazing friends and family! We love you!!

Day +70.............a little rough patch

2009-11-20T21:37:00.005-07:00

Hey guys! Well, we have been having a rough past few days. On Monday night, Dylan threw up and it was the first time in over a month. He has been throwing almost everything that he has eaten and is not wanting to eat at all. We changed all of his meds BACK to IV, hoping that it helps his tummy a little better. He does not have a fever or any other symptoms of any viruses, and all of his labs have come back negative. The Dr. thinks that his stomach is still not all the way healed from the transplant and is having a hard time emptying and digesting properly. We are hoping that it goes away with time, but we are now on our 5th day of throwing up. Tomorrow, the plan is to increase his steroid dose to see if that helps at all. He is staying hydrated well with all of the IV meds he is getting. We are praying that he will start eating well soon so that we do not have to give him any supplements through his IV. It is hard because it feels like we are taking a few steps backwards. Just when we think everything is going well, something like this happens. It is hard not to get disappointed or frustrated, but we have to go back to realizing how far God has brought us. Dylan is CANCER FREE!! CANCER FREE!! What an amazing thing to say!! So why do I not trust God with something as simple as throwing up? He is constantly reminding us that He is in control....and we are NOT!!

On the positive side of things, we are still on schedule for leaving Tucson and moving home by December 4th. YAYAYAYAYAYAYAY!! PLEASE PLEASE PLEASE pray that Dylan is able to be healthy enough to go home and that we are able to move back and be a family and be in our home. We will be going home for Thanksgiving and then will be back to Tucson for our final week. We have so much to be thankful for this year. We always have a million things to be thankful for.....but this year is so much different. Dylan has opened our eyes to the hurting world around us and how much we have to be thankful for.

Thank you for all of your continued prayers and we will keep you updated with Dylan's status. I can't wait for him to meet all of you someday! All of his prayer warriors!!

Taking it one day at a time, and trusting God with EVERY step,

Michelle

Light The Night 2009

2009-11-20T21:14:00.005-07:00

The Light the Night Walk was a huge success!! Erik and I were completely overwhelmed by the number of friends and family that joined 'Dylan's Dream Team'! What a great reason to be overwhelmed!! We had our family, our closest friends, and new friends join us as we proudly walked in Dylan's honor. We had the largest group there, with a total of 125 people!! WOW!!! It was a sea of blue Dylan shirts!! As a group we raised $2400 for the Leukemia and Lymphoma Society--and THAT's AMAZING!!

A special thanks to the Davis Family for providing our special Dylan T-shirts, and also to the Pieters Family for providing special Dylan Water Bottles!! I will put a close up of the shirt and water bottle later. We cannot thank each and every one of you enough for coming out and supporting us! We are truly blessed with the most amazing support system!! Thank you for coming out and taking time out of your busy schedules to support our family and this great cause!! YOU GUYS ARE AWESOME!!

For those of you who were not able to make it this year--there is always next year......and this time Baby D will be walking with us.....and every year to follow! We were so excited to be able to carry a "survivor" balloon down the dark pathway, lighting it up with every step we took. It was a very special night, a night we will never forget! We are looking forward to many more events and walks and want to help others fight this horrible disease.

Thank you!! We love you!!

The Praskins Family

7 Months old.....and CANCER FREE!! Dylan is at 100% Engraftment!!

2009-11-17T09:55:00.007-07:00

Good Morning Everyone!! Well, today is a day to CELEBRATE!! Yesterday, we got the long awaited call. FINALLY!! The information that we have been waiting for sooooooooooooooooo long!! Baby Dylan is OFFICIALLY 100% Engrafted!! His cell counts came back as 100% Donor and 0% Dylan Cells!! Just as Dr G expected (he is so smart!) WOOOOOOOO HOOOOOOOOOOOOO!!! We cannot even begin to tell you how excited we are about this amazing news and how thankful we are for God's continual healing! So what's next? Next, we pray that the Leukemia does not come back and that Dylan stays in remission. It is possible, not likely, but possible, for Dylan's leukemic cells to come back and infect the new bone marrow. But because Dylan had a 6/6 cord blood match, it is not likely to happen. Dr. G has not had anyone with Dylan's type of transplant relapse after hitting the 6 month mark. So after 6 months, the chances of Dylan's leukemia coming back are almost non-existent. After Dylan hits one year post transplant, he will be considered completely cured. HOW AMAZING!! We know that the Lord is healing Dylan every day and we believe that his cancer will never return! On April 16th, 2010, Dylan will be turning 1 and will be cancer free for 6 months!!! WHAT A PARTY IT WILL BE!!! Thank you all for your continued prayers. Please pray that Dylan's body will continue to embrace it's new cells and that the healthy cells will multiply and fill Dylan's body! Please pray that he continues to stay "side-effect free" and that he continues to feel better everyday!! We are rejoicing today, as with everyday, with the little life that God has blessed us with. Dylan is one of a kind and we could not have asked for a better son. His smiles keep us going everyday and his little personality is blooming! He is such a joy and we are so thankful for our little Dylan!

More updates of our fun weekend in Phoenix to come! I just wanted to get this information on here now so that you guys can celebrate with us!!

Walking by Faith,

Michelle, Erik and Cancer Free Baby Dylan

Waiting for Dylan's Results

2009-11-16T14:47:00.002-07:00

Hello All,

We are waiting patiently with great anticipation of Dylan's 60 Day transplant results. We were supposed to find out Friday, but there was a delay with the lab. We were told we should find out later today or tomorrow morning. We appreciate all of your prayers and all of those that participated at the Leukemia walk on Saturday evening. It was a great turnout and Michelle will update the blog shortly with details and pics.

Day +60....has it really been 60 days already?!!

2009-11-10T12:39:00.007-07:00

Hello everyone!! Only good news to report! Dylan is still happy, still smiley, and still feeling good. I think we have finally passed all of the yucky times!! PRAISE BE TO GOD!! We are at day +60.....and what does that mean? That means engraftment testing! WOO HOO!! They took some blood yesterday and it is on its way to a special lab, where they will decipher how many cells are Dylan cells, and how many are Donor cells. The goal is to be as close 100% Donor as possible. We will not get the results until Friday, so we have a long week of waiting and praying ahead of us! Dr. G believes that we will have great news on Friday. He said that based on Dylan's numbers and how fast he started to make his platelets, he believes that the donor cells have completely grafted! He said that, "you moms" always want it on paper.....AND I DO!! But for now, I guess I can take the expert's opinion :)

We now only have to go to clinic on Mondays, Wednesdays, and Fridays.....and we have Tuesdays, Thursdays, and weekends off!! Woo Hoo!! It sure beats having to go to clinic EVERYDAY :) So now I just give him his morning meds on days off. It takes about 3 hours, and we have almost 5 meds going in at one time through his three lines. We are slowly switching over some of the meds to oral, so that will be interesting. It is almost easier putting them through his IV. So far, he does well with the 3 he is on, so we will see how he handles 8+ oral meds, 2-3 times a day! Most of them are mixed with a flavored sugar solution, but D does not like it too much. I bought a special bottle that has a syringe built into it, so we may try that out too. Poor little guy hates medicine time :(

We are all set for the walk this Saturday and are very excited to see our friends and family. We have 54 people signed up so far, so if you plan on coming, and are not signed up yet, please register at lightthenight.org. We have a friend that is donating shirts for the walk! Yes!! DONATING!! Isn't that Awesome??!! God provides even when we do not expect it!! So we will have shirts for everyone on Saturday :) If you have any questions about the walk, please just email me. If you cannot make it to the walk, and are able to donate, please do!! Just go to lightthenight.org and on the top of the page, click on find a participant/team. Then either type in a name or dylans dream team. Then just click donate! You can pay with your debit or credit card so it is really easy! Even if you can give $5, every little bit helps!!

Thank you to everyone for your continued support, love, and prayers! You are amazing and truly appreciated!!

Day +56......Happy Days Are Here Again!!

2009-11-06T18:23:00.004-07:00

Hello Everyone!! Well, there is not much new going on right now.....which is AWESOME!! The days are fun, and we are enjoying every little smile and giggle from Baby D. I am ecstatic that he is FINALLY feeling better! Not only are we enjoying the new and refreshed Dylan, BUT HE is enjoying life.......FINALLY! He is happy and feeling well. It is probably the first time since August that he has felt good on the inside. I am sooooooooooooo happy that he is happy and feeling well! What a blessing! THANK YOU LORD!! He has been sleeping really well the last 4 nights also. First night was 6 straight hours, the next night 5, the next, 6 hours and then last night......8 straight hours of sleep for Baby D....AND MOMMY!! I cannot even remember the last time I got that much sleep without someone watching him for me. I am hoping and praying that this continues.....so please join me in that prayer :) He is giggling, smiling and happy 95% of the time that he is awake, and I just cannot stop holding him, hugging him, and kissing him every chance I get! I am so thankful for the life that he has been given and I cannot express the joy in my heart that I feel. Thank you all for all of your continued support and prayers! I feel like we just started to run in this race we are in and are not walking at a slow pace anymore. I want to run the race that the Lord has set before us, without hindrance from fear or worry.....God is in control!!

Monday is the BIG day of his engraftment testing.....please pray for 100% Donor cells and 0% Dylan cells!! Results should be back on Friday.....and it will be a long week of waiting!

Enjoy the pics....they don't even scratch the surface of showing how happy and renewed he is--but they are a glimpse! :)

Reminder: The Light the Night Walk is NEXT Saturday on the 14th :) We are not going to get shirts because of budget, but we are all going to try to wear blue....any color blue :)

Running the Race through faith,

The Praskins Family

Day +53.....Baby D is feeling better!

2009-11-03T21:38:00.004-07:00

Hello all!! I am overjoyed to tell you that we have a very smiley.....and close to healthy 6 1/2 month old! These past few days, he has been a different boy. We are hoping and praying that this change is here to stay!! It's almost like he did a complete turn around in one day. He is smiling, he has a different cry, and.....he is throwing temper tantrums!! YAYAYAY!! I know that may sound like something strange to be excited about, but we are!! It's normal! And normal is what we want :) There is no denying that this little guy is spoiled.....but what else could we do?! He gets frustrated when you are not holding him, and he wants his own way......he is a normal, selfish baby :) And this baby is now showing his tough side. He has found that he has muscles and is starting to use them. He now loves to arch his back, and is kicking a lot more often and is trying to move in any way he can. Well, now when he is in his car seat, and does not want to be in there, he tries to arch his back and holds his breath.....it's actually quite funny! I would never think that I would be happy to see my child throw a fit....BUT I AM!! Of course we will be working on these things as the days go on, but we are excited to see the changes. HE HAS BEEN SO SMILEY and has even started to laugh again.....I almost started crying the first time he laughed again! We are excited to see the daily changes in Baby D and it has made life in Tucson so much more fun!! He even slept for 6 hours straight last night.....we will see what happens tonight (it may be too good to be true). He is working on his neck muscles again also. He is still a little bobble head, but is slowly gaining back control. The crying fits have subsided and are hopefully a thing of the past! He has gone 3+ weeks WITHOUT blood and platelets transfusions--he has gone 4+ weeks WITHOUT throwing up--and he is on his way to being a perfectly healthy boy!! We are sooooooooooooooooooooooo excited to see what the results of his grafting tests are next week! D is also starting to grow back some of his hair-eyebrows-and eyelashes! I thought his face was dirty the other day and I was trying to wipe his eyebrows, only to find out that the "dirt" WAS his eyebrows! HA! He is growing back DARK BLACK eyebrows and eyelashes! Who would have known? The chemo and some of the anti-rejection meds he is on can make his hair grow back darker, so we will see what grows in the next few months!

To think that 5 months ago, the doctors told us that he had a 20% chance of surviving this aggressive disease.....WOW....God is AMAZING!! Look at him now.....look at what God has done in his little body! We are blessed beyond measure and are so excited to continue on this road to recovery. We are now getting to the point where we can go to clinic every other day. Today was a day off....so nice!! I still have to give him his morning meds at home, but it is much better than hanging out in clinic! He is still on a lot of meds and most of them are through IV. Eventually, they will all go to oral meds, but we are still a month or two away from that. Dr. G says that if all continues to go well, then we may be able to go home-home (to Surprise) by the end of the month!!! What a great Thanksgiving this could be!! We all have so much to be thankful for......and I will NEVER take life for granted....NEVER AGAIN!!

Well, I better get off to finish the rest of our nightly routine. Bath time, and then dressing change....and then hopefully bedtime!! My favorite!!

Please pray that Dylan's body continues to heal from the inside out, and that his counts continue to go up. Please pray that Erik and I can stay strong over this next month until we finally get to be together as a family again. WE ARE SOOOOO EXCITED TO GO HOME!! We will still have to come to Tucson 2x a week....but that is OK with me! :)

Day +51.....a better day AND night

2009-11-01T22:28:00.004-07:00

About Pics: On Friday during the 'kid dress up day', Daddy got a Dylan tattoo of a Dinosaur painted on his arm by an artist....but that Dino looked too ferocious to be Dylan :) The nurses were calling Dylan, Dylasauras Rex!! He was a cranky little dino that day, but once he was asleep....he was a DINO-Snore! Ha!! I know, I am cheesy!! I also just had to get a pic of just another cute outfit with him and Auntie Karyna, and Daddy.

**********************************************************************************

Hey guys! Thank you to everyone who has been praying for us. We have changed Dylan's formula and a few other things and lowered his steroid dose, so we are hoping that this helps his demeanor just a little bit. He did well yesterday with few episodes and has done well today also, with just minor crying fits (but those just may be him being a "normal" baby)--and none of them required meds to calm him down!! YAY!! I went to the grocery store this evening and left Dylan with Daddy....and I ALMOST got through the whole shopping list without "the call".....but unfortunately, Daddy called with Dylan screaming in the background. He just wanted his mommy :) All in all, he is doing better....and I am so beyond thankful for that!!

D's counts are still doing well and he is hanging on to his platelets and continues to make the amount his body needs......HUGE answer to prayer! We will be getting his graft testing done in just 9 days!! They usually do it on a Monday, so maybe as early as next week, with results by Friday!! God has continued to amaze us with what He can do and we are excited to see the next GREAT thing!!

Well, D is being super smiley right now.....SO AWESOME!! So I am going to take advantage and enjoy every single one! Maybe he might even let me catch some on camera :)

DON'T FORGET TO SIGN UP FOR THE LIGHT THE NIGHT WALK ON SATURDAY NOV 14TH--we already have about 25 people on our team and are looking forward to seeing all of our friends and family!! As long as things go well, we will be able to bring down Dylan for the weekend and have him join us for the walk--So exciting!! Thank you in advance for your support!! I hope we can see you all there!! (see the Walking For a Cure post for details)

Goodnight to everyone and we will talk to you later!!

Day +50......we had a rough night

2009-10-31T10:44:00.002-07:00

Good morning everyone. Well, first of all I want to thank all of you for praying for Baby Dylan and his fussiness. On Tuesday, the day after I posted that he was fussy and asked for prayer.....he was like a new boy. Karyna and I were amazed at how good he was all day. He did have a fussy period from 5-8, but that was nothing compared to what we had been dealing with the past few weeks. He has continued to have "spells" during different parts of the day and none of them have any rhyme or reason to them. They usually last about 2-3 hours and then he finally calms down and goes to sleep. Yesterday was the exception. He had a rough morning at the clinic, and after two hours of crying and Ativan, he was given some benadryl and that did the trick--it allowed him to get 3 good hours of much needed sleep and calmed down his tummy. Then about 4pm, it started up again. Now, just to give you an idea of how he is acting, it is not just normal baby fussiness--it is all out crying and even screaming sometimes. He thrashes back and forth and cannot get comfortable in any position. Just when he settles down and looks like he is going to fall asleep, it starts up again. It does not matter if you are holding him, he has his binky, or if he has a bottle--nothing works. He was like this, on and off (mostly on) from 4pm-3am!!!! It was a trying night to say the very least. I think we all had pounding headaches by the time the crying stopped and I cannot even imagine how baby D was feeling. He was given meds around the clock, but nothing seemed to work for more than 15 minutes. At 2:30, Karyna, saved me from going insane and took D for the rest of the night. THANK YOU KARYNA!!! He fell asleep after his 3am meds and slept for a good 4 hours. So far, he seems to be doing ok this morning. He is completely exhausted and needs to catch up on his sleep. PLEASE, PLEASE, PLEASE, keep him in your prayers. The poor little guy is so restless and something is going on in his little body.

He has been doing so well with his counts--but this is a huge struggle. I have had numerous people emailing me and suggesting what it may be....so thank you....I just wish it was as easy as another ear infection or teething.....something that can be fixed. We are changing his formula from Soy to lactose free to see if that makes a difference at all. Also, his cultures from Monday came back showing an infection, so that may have something to do with it. The infection may be in one of his lines, so they took more cultures today and will get an answer early next week. The antibiotics are being changed once again to catch the culprit behind the infection. Please pray it is something that antibiotics can fix and that we do not have to take out one of his lines.

Well, that is just a little insight to what we have been dealing with this week. On a side note, we have really enjoyed the visitors that have come by and appreciate everything that everyone has done for us. Thank you for the cards, the encouraging emails and comments, and the tangible things such as gift cards....you guys are amazing!! We love you and I hope to have a good report for you later :) We also dressed Dylan up as a little dinosaur yesterday for the clinic's dress-up party, so there will be pictures posted later.....SOOOOO CUTE!!

We know that God has a plan in this, and we are looking to Him for strength....thank you for your prayers!!

Hope you all have a fun and safe day!!

Love
Michelle

Walking For A Cure!

2009-10-27T13:33:00.007-07:00

Hello Everyone!

Over the past several months, our family has become more aware of the importance of finding a cure for cancer. It has impacted our lives significantly and has allowed us to be a part in helping any way we can! Donating blood, platelets and being on the bone marrow donor list are just a few of the things we can do to help.

We are doing a team cancer walk for Light The Night in honor of precious baby Dylan. We are very excited to participate and give to this wonderful organization...and we want YOU to be a part of it! They give and support families with loved ones who have been diagnosed with certain blood cancers. Michelle, Erik and Dylan have personally been blessed and supported by Light The Night and are now wanting to give back!!

Light The Night Walk is The Leukemia & Lymphoma Society's evening walk and fundraising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost.

The Leukemia & Lymphoma Society (LLS) funds lifesaving research that has contributed to major advances in the treatment of blood cancers and treatments for other types of cancer, such as chemotherapy and stem cell transplants. These treatments have helped patients live better, longer lives. New targeted therapies that kill cancer cells without harming normal tissue are providing drugs and procedures that are improving quality of life.
A donation of $25 provides patients and their loved ones with FREE booklets that contain up-to-date information on their disease and help them make informed decisions about their treatment options.
A donation of $50 makes possible a Family Support group with a trained facilitator where comfort can be found and experiences can be shared among patients and family members.
A donation of $100 helps supply laboratory researchers with supplies and materials critical to carrying out their search for cures.
Please make a donation to support my team's participation in the Light The Night Walk and help save lives. Be sure to check my team's Web site frequently to see my team's progress, and thanks for your support!
If your family would like to carry a illuminated balloon and get a T-Shirt, a minimum of $100 donation is needed.

West Side Walk Information:

Saturday, November 14th 2009

Sahuaro Ranch Park
9802 N. 59th Ave.
Glendale, AZ

Walk Distance: 2miles
Check In: 5:00pm
Opening Ceremony: 6:00pm
Walk Start Time: 7:15pm

Sign Up Information:

1. Log onto lightthenight.org

2. Click the find a participant/team link located in the blue border at the top. Enter Dylans Dream Team in the team look up.

3. A list of names of participants walking with the team will appear. Click on Dylan's Dream Team located next to any name.

4. This is the team website page. At the bottom, you will see a spot to sign up. Donations can be made through all major credit cards.

There is no donation required to walk. We are trying to raise money as a team...not as individuals. You may have someone sponsor you if you'd like.

Please join us in the hope of finding a cure! Donations of any size are accepted. If you cannot walk but would still like to donate, you can do so. Thank you to everyone for your continued support of love and prayers for my family! You are truly appreciated!! Any questions, you can contact me at: melsue66@aol.com.

We will be ordering Team t-shirts...sign up ASAP so we know how many shirts to order.

P.S. Dylan-the guest of honor, may be doing an appearance! This is exciting news :)

For Him,
Dylan's Auntie Mellissa

Day +45....only 15 more days until graft testing!!

2009-10-26T21:45:00.005-07:00

"LIKE FATHER.....LIKE SON--THIS IS THEIR AFTERNOON NAP"

Good evening everyone!! Well we have some great news!! Dylan is continuing to make his own platelets. His numbers are increasing every day! This is a sign that the donor blood is grafting and grafting well!! The doctor believes that on his 60 day testing, it will show that his cells are 100% donor!! His white count is WAY up to 10.9....which is elevated due to the steroids he is on, but still awesome nonetheless. The doctors AND mommy and daddy, are VERY happy with his progress and are excited to see what results we get in the next few weeks. This is only one piece of the puzzle. Dylan is not acting so well. He is back to being grumpy and uncomfortable for 90% of the day and is usually crying unless sedated by Ativan. This is a very difficult trial for Karyna and I, as we are dealing with the constant grumpiness and crying ALL of the time. Not only do we feel horrible for Dylan, but it is very trying on our patience, along with all of our other responsibilities. PLEASE pray that the doctors can figure out what is making Dylan so fussy....PLEASE!! EVERYONE will be happier! And I long to have my happy baby back. We have not seen too many smiles the past few days and are looking forward to having them back very soon. For now, the doc is going to manipulate a few of his meds to see if that is the problem. Dylan is finally off of his TPN!! PRAISE GOD!! That is at least one less med--and I am excited about that!! He still does not eat too well during the day, which is strange. At night, from midnight to 6am, he usually eats between 4-6 ounces! This is a great step in the right direction! Please pray that he starts to eat more during the day, and that he does not have to have any more TPN or other supplement. All in all, Dylan is doing PHENOMENAL and we are excited to be on the road to recovery. Please pray that we do not run into any more unexpected obstacles and that he will continue to feel more like himself.

I will leave you with a cute message that I got from one of my favorite people:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hi Meeshell.
Jake and I are having a discussion right now about how Dylan is like this little baby superhero so we're picking out super hero names for him and talking about what he would wear. Jake likes the Dylanium Falcon (after the Millenium Falcon, the ship on Star Wars), but I said it just doesn't have that ring to it. We'll work on the name. We decided he has the power to overwhelm foes with his unparalleled cuteness able to control adults everywhere, and he has the regenerative powers of wolverine, he's completely impervious to any sort of attacks. If you walk into his room and he's not there, don't panic, it's probably cause he's turned invisible, either that or he's out fighting injustice. Jake says to check baby gap for capes. I say his outfit should be tough, like maybe leather and cool shades. We could probably turn this into an awesome comic book. We'll contact Marvel, see what they think.
Praying for Dylan's continued healing, strength for you, and protection for your marriage. I love you tons.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Wasn't that cute?! I love you Em and Jake!!

Thank you everyone for your continued faith in God, and believing and praying for Dylan's healing. You all are amazing prayer warriors!! God has brought us so far, and yet we seem to have another marathon ahead of us! We are thankful that we are NOT ALONE!! We love you!!

Walking by Faith,

Michelle

Day +42.....a wonderful day!!

2009-10-23T20:59:00.003-07:00

Good evening everyone. First thing I want to say is that God answers prayers!!
Not only is Dylan off of oxygen and eating well, but he is starting to make his
own blood products again!! This is something we have been waiting for and I am
thrilled to tell you that his platelets have been stable the past few days and
even increased today!!! His WBC is up to 4.9 and he is doing well!! The Dr G's PA, Tracey, said she may even do a cartwheel tomorrow if his platelets go up again!! When the nurse came in with the blood test results this morning-I cried out of excitement,joy, and thankfulness!! How great is our God? He is faithful and has brought us through so much!! We posted a slide show on youtube (see previous post), under Baby Dylan's Story.....and it is far from being over!! Enjoy!! We are so very proud of our lil fighter and are in awe of the miracles that God does in his life
everyday!

Hopefully we will have more great news tomorrow!! Keep praying! We love you!!

Baby Dylan's Story

2009-10-23T14:56:00.005-07:00

Enjoy...this is his story so far....and there will be much more to come!!

Day +40.....and OFF OF OXYGEN!!

2009-10-21T21:10:00.002-07:00

Hello!! Has it really been 40 days since his transplant??! It seems to have gone by sooo fast! And I guess that is a good thing. Only 20 more days until they do the engraftment testing. Remember that we want 100% donor cells and 0% Dylan cells--please pray for that. The doctors are confident that this will be the result, so that is very exciting. On Sunday I asked for you guys to pray that D would get off of oxygen soon....and guess what? NO MORE OXYGEN!! This is a huge praise once again. He hates having the nasal cannula in his nose and is always tugging on it and itching his face....so for now, it is gone!! Right now the struggle is eating. He seems to want to eat, but it often upsets his tummy and he ends up throwing it up. Monday he decided not to eat at all and just kept throwing up chunks of mucous. I know that sounds digusting, but its even more sad to watch. The poor lil guy just struggles and cries until he can get it out. He did that same thing tonight. Nothing seemed to make him happy and he just kept crying....and then finally...the whole once he got down earlier came back up. :( It's so frustrating for both mom and Dylan. I want so badly for him to be able to enjoy eating again and get back into a normal schedule. For now, until he starts eating regularly, the docs have him on hydration with vitamins, and are giving him steroids to make him a little bit hungrier. It's a trial and error time. Please pray that his tummy heals quickly and that he can soon eat normally and keep it all down. He gets so excited to eat sometimes, only to feel icky later. There is only so much of his sad cries that I can take...it's so hard :(
On a lighter note, he is growing well. His weight, along with fluid intake, is finally under control. He now weighs 15 pounds and is almost 25 inches tall. He is responding well to those around him and is flirting again with the nurses. He is opening his eyes more and more every day, but his left eye is a little bit lazy. We are hoping that this goes away with time--but it does not seem to bother him. Developmentally, he is pretty much like a newborn again--at least with physical strength. Before transplant, his legs were getting really strong, along with his neck and back muscles. Now, when you pick him up, it's like holding a newborn. He neck is wobbly again--I call him my little bobble head. He does not seem interested in using his legs at all and they are very weak. We know that he will have the rest of his life to regain his strength, but it is still very hard. The great thing is that he is still super cuddly and loves to snuggle!! Every time I start to get frustrated about something, he just flashes me one of his smiles and all of my worries go away!!

Well, I better get back to the munchkin, thank you for praying for our precious boy!!

Love,

Michelle

Day +37............Somebody is smiling again!

2009-10-18T22:54:00.004-07:00

Hello Everyone! I write to you today overjoyed with the progress that Dylan has made in the past few days!! He has been EATING, SMILING, and HAPPY!!! WOWOWOWOWOW!! Praise the Lord!! He is like a new baby!! He has been eating almost an ounce every 4-6 hours. This may seem like a little bit, but it is a HUGE step in the right direction. As we taper down his TPN, he will become hungrier, and therefore eat more and will not need the IV nutrition anymore......the day is coming soon!! He has also been smiling more! A LOT more!! Not back to normal happy D, but getting there!! He was sooooo excited to see and hear from his daddy on Friday night. I have not seen such a huge smile since before transplant and his eyes opened wide to see who was talking to him! He is still not opening his eyes all of the way, all of the time, but again....he is making progress. He has been less grumpy, and he even slept for more than an hour for me last night! WOOO HOOO!! Let's pray I get another night of more than 3 hours of sleep :) His WBC was at 2200 today, which was more than yesterday....and we will continue to pray that it increases. He is still on oxygen...its been about 4 days now. He is on around the clock Lasix to rid his body of fluids, but he is still retaining a lot, therefore making it hard for him to breathe. Maybe tomorrow will be the day he gets off!! Let's pray for that!!!! He is not showing any signs of GVHD (Graft vs Host Disease), and that is a HUGE praise!! One more obstacle out of the way!! God has protected him so much from all of the things that COULD have happened and that often do to those going through transplant. All the more proof that the Lord's hand is holding Dylan through this process.

It has been really nice having Daddy around! I missed my hubby and D missed his Daddy! I feel like more of a family and less of a single mother when Erik is in town. Please pray for him as he is struggling with wanting to devote his time to us, but also trying to provide for us. His business is like a roller coaster (real estate), so please pray that God gives him a clear direction in where he wants him to go. He will be here for the next few days and we will cherish every moment with him. Even if that means me sacrificing the TV and watching sports with him ALL day long....oh how I love football, and more football, and then a little bit more!!

We are getting used to our new routine. Clinic days have been anywhere from 4-6, sometime 7 hours long....and although it seems like it takes forever, at least we are not living in the hospital. Our little Tucson condo is suiting us well also. It is quite comfortable with a lot of amenities of home....such as a fridge!! And washer and dryer! And a bed that is not hospital grade....it's the little things that I appreciate so much!

I talked with yet another family who has a baby with leukemia :( They are a friend of a friend, and they found out about a month ago. Their little one was 6 weeks old when she was diagnosed--her name is Bailey. Please pray for their family as they get ready to endure the biggest struggle of their lives. I will ask her mom if I can post a pic and her website so that you guys can pray for their family and their specific needs. Just 4 months ago I was oblivious to the world of cancer and the effect that it has on it's victims and their loved ones. I never even knew that babies could get cancer. God has opened my eyes to a world of suffering and pain that I never knew about...and maybe he has us enduring this so that we can be an encourager to other families who feel like their worlds are falling apart. God has given us another glimpse into His plan....and although we feel that we will NEVER understand....we will continue to walk by faith. This is the HARDEST trial.....and we appreciate all of your prayers and support.

Have a blessed week, and PLEASE, PLEASE, PLEASE,....hug and kiss your kids and loved ones relentlessly...they are healthy and alive and NEVER take that for granted.

Love,

Michelle, Erik, and baby D

Day +35......DYLAN IS 6 MONTHS OLD TODAY!!

2009-10-16T21:15:00.002-07:00

HAPPY BIRTHDAY BABY DYLAN!! I cannot believe that he is already 6 months old! He has grown up so fast and has spent 2/3 of his short life in the hospital. Soon this will all be over, and he can live a normal life-a life that he deserves more than I can ever express. A life that we long for so much. Oh it will be amazing!! I am so excited!! Whenever I start to feel completely overwhelmed or frustrated, I am reminded that this is temporary, and it is not forever. We will soon be home with our pumpkin, in our house, with our dog, Lily, in our own beds.....ahhhh I can feel the comfort now..... :)

Today, Erik and I had the pleasure of talking about Dylan's story at an inspirational brunch for Keller Williams Realty. It was a great experience. We were able to hear the stories of two other amazing families and got to meet a lot of really wonderful people. One of the realtors is a friend of Erik's and she asked us speak at the brunch. Erik does not think of himself as a great public speaker, but I feel that he did really well. He stayed up late last night writing his "script" while I passed out in our bed after driving from Tucson and arriving at midnight. He had four pages typed out and just read from them when we were talking to the group. He read it beautifully. It is hard to talk about Dylan without crying, so the script helped him stay on track (with a lot of crying too :). After he was done talking, I talked a little bit about how Dylan is doing now and the next steps. Then we had a video of Dylan photos with music....it was awesome! Daddy and Ben,a friend from Northwest Valley Church, did an amazing job!! We will be uploading it to youtube soon, and will post a link on the blog.....but I am warning you....it's a tear jerker! We feel blessed that we were asked to speak today and are so very thankful to each person who was there and heard our story! Thank you for the donations, the prayers, and the support!! The Keller Williams Real Estate group really does feel like a big family!!

Now, back to the main man, Mr. Dylan! Well, he decided to start eating again today!! He ate about an ounce last night, and then another this morning, then another this afternoon, and another this evening....sounds like a pattern to me!! PLUS, he has not thrown up once!! YAY D!!! We are so proud of him!! God is answering prayers everyday and we are blessed to be able to see them! He is still on TPN, and as his eating continues, his TPN will taper off and then soon he will be OFF!! YAY! One less med to give and no more carrying around a fanny pack with TPN! YAY YAY YAY!! Oh, and did I mention, YAYAYAYAYAYAY!!! D's WBC was 2.0 today. This is disappointing to me, but the docs say it's normal...and I suppose they know what they are talking about :) The Doc is happy as long as it is over 1.5, so I guess we can be happy too! He is in great spirits today!! He is even opening his eyes! He has been so cranky and uncomfortable lately that he has not been opening his eyes much. Maybe that phase is over--I sure hope it is. He has been smiling more often and seems more alert. His voice is a little muted. He always seems to have voice problems after getting anesthesia because they have to put the tube down his throat. Hopefully it is very temporary. Other than that, things are going ok. He has not been sleeping very well at night. He definitely has his days and nights mixed up, but it's normal for babies who spend so much time in the hospital. So for now, I just have to adjust and try as hard as possible to sleep when I can. I am thankful that I have help from family, because the past few days I was a walking zombie and the nights that I can sleep are VERY MUCH NEEDED!! Thank you family!! Erik's mom and dad just left a couple of hours ago and my mom and her husband,Lee, are coming tomorrow-- we are excited to see them!! (and excited for another break!) Erik is also down here with me now for the next few days!! He had not seen Dylan for almost 3 weeks because of him being sick, so he was excited to see the little guy!! And when Dylan heard his voice, he opened his eyes really wide and gave his Daddy a long awaited smile....so cute!!

Well, I better get going and try to get my little one to sleep and tuck in my big baby who has fallen asleep with the TV on.....oh how I love my boys!!

Have a GREAT WEEKEND!!

Walking by Faith,

Michelle, Erik, and Baby Dylan

Day +32....our 4 month anniversary

2009-10-13T22:53:00.003-07:00

4 months ago today, Erik and I received the worst news of our lives. I can still hear the doctors words and the crushing feeling that I felt. WOW....has it really been 4 months? I remember getting "the talk" about all of the negatives and reality of what may happen....that Dylan's chances of surviving were not good. AND LOOK where he is today. God is so GOOD!! He brought us out of the devastation and into hope. Hope that only He can provide. Sometimes these past 4 months seem like an eternity, but in the big scheme of things, it is such a short time. We still have a very long journey ahead of us and want to thank you for enduring this trial with us. We long for the day when we can safely say that Dylan is 100% cancer free...I pray for that moment everyday!! Until then, we take today as a challenge to get through and thank the Lord for giving Dylan life.

Day 32 and Dylan is fighting hard! He is still a different baby. Still grumpy, still very weak, but also fighting hard to get better. His cell counts are continuing to increase...I don't quite believe Dylan's number for today, so I am going to keep it a secret until I hear his number tomorrow :) BUT I will tell you that his WBC was 2900 on Monday....and that is all I will say for now. Today we spent 7 hours at clinic.........oh what a LONG Day!! There is only so much of the hospital that I can take, and I am WAY past that point. Regardless....we gotta do what we gotta do! Dylan has been hungry that past couple of days and has tried to eat a few times, only to throw it up 5 minutes later :( This is going to be a long and frustrating process to get him to eat....please pray specifically for this to be over soon. He also is throwing up a lot more mucous which is good, because that means that his cells are reproducing and making his mucous membrane again. The throwing up part is not so much fun, but it should not last too much longer. Dylan is once again on oxygen. Today, at clinic, his sats were showing that he was at 60% oxygen....not good...so hopefully he will get his sats back up so we can take this silly thing off again. The positive thing that happened today was that he SMILED!!! Not just a little smirk, but a full smile!! It was AWESOME!!! He is still not opening his eyes all of the way yet, but he is attempting to open them at least half-way. I cannot wait to see more and more smiles as the days go on. He did not get an MRI on Monday because the Dr wants to wait, so I will let you know when that is happening. All in all, D is doing well, and is staying on track with what the Docs expect to see. PLEASE pray that he continues to FEEL better. He gets so cranky sometimes and nothing seems to help! Not even the magic warm towel!! He is still hurting inside and has no way to tell us what is wrong, so he just whines and cries. It is so sad.
But this too, shall pass--I'm just praying it passes quickly :)

Thank you for your continued prayers!!

Goodnight :)

Michelle and Baby D

PS- Erik is feeling better and should be able to visit this weekend!! YAY!!

Day +30...Thanking God for warm towels!!

2009-10-11T17:06:00.004-07:00

Good evening everyone! Well, we are at day 4 at "home" and so far, so good. The medicine routine is almost perfected. After I am done writing this, I will be preparing all of the meds for the 7 pm doses. I think the hardest thing is making sure I have enough flushes ready for everything. I can't even begin to tell you how many I have gone through!! Last night, Mandy was here, and I had her prepare all of the flushes and inject the vitamins into the TPN. Then she administered all of the meds through his IV and then flushed them when she was done!! She is going to nursing school and thought it was really cool!! Plus, she did an awesome job! She has already learned so much from Dylan, and it makes her want to be a nurse that much more. She cannot wait to take care of people and be an amazing nurse just like the ones we have been blessed with!!

Speaking of great nurses, one of our favorites from Phoenix, Alison, was in Tucson for the weekend, and came an visited us yesterday!! Isn't that sweet??? It was really great to see her and it really made an impact on me....and of course baby D (even though he was asleep, he loved seeing her!! ha!). The clinic that we go to everyday is just down the hall from the place where we have been staying the past 6 weeks, so I am able to go over and talk to D's nurses. Everyone at UMC has been so supportive and helpful. I even have nurses bringing me seasons of their favorite shows!! Thanks to Kelly, I am now officially addicted to ER--currently on season 4--only 11 more to go!! And I will soon be hooked on Grey's anatomy, thanks to Taryn!! You guys are AWESOME!! We even received some DELICIOUS chocolate chip banana bread from Kathie!! We are sooooooo spoiled and blessed!

This weekend has been wonderful with my sisters here. It's like having my own personal chef and personal organizer for the weekend. Mellissa made yummy Olive Garden soup last night, along with some chicken tortilla soup today that will be ready and waiting in the freezer for us when we need it. The next items on the menu are stuffed shells and pot stickers....Mel, you are AWESOME!! Mandy is the organizer, and when she saw the mountains of medical products, she looked like a kid in a candy store! Now, all of the syringes, needles, and medicines are neatly organized with coordinating labels!! The condo is clean, laundry is done, and all of the bags and boxes are unpacked!! What a stress reliever!! I love you guys!!!!!

Today was day 3 in the clinic, and since Dylan did not need any transfusions, we were in and out of there in 3 1/2 hours!! Not too shabby. Tomorrow is going to be a MUCH longer day. Dr G wants him to get an MRI to just double check everything and make sure that there are not any problems from some of the stronger meds. MRI means anesthesia :( I am not looking forward to it, but it is good for him to make sure that there is nothing abnormal. Please pray that D handles the anesthesia well and that it does not make him feel worse than he already does. He seems to be feeling a little bit better. He is not as crabby and is actually awake without crying for short periods of time. We have found a solution to get him to sleep. WARM towels or blankets!! It's like magic!! The second you wrap him in a warm towel, he immediately calms down and passes out....it's actually quite funny!! I am thankful that we have found a way to make him feel comfortable without having to drug him up all of the time. He still needs to have Atavan at night sometimes to calm down and control his pain, but overall, he has been needing less pain meds. He has been getting some good sleep the past couple of nights also!! And that means I am too!! YAY!! On friday night, he slept from 1:00am-8:00am and we had to wake him up to go to clinic. I thought it was a fluke and was sure it was not possible to happen again, but it did! Last night he slept from 12:00am-7:00am.....what a blessing!! Thank you Lord for letting us sleep well!! We are trying to get into as much of a routine as possible. After meds are done, he gets his bath, and then his line care. Usually after that, he is awake for about an hour and then I lay him in his pack'n'play. He is awake when I lay him down and he usually fusses for about 5 minutes and then falls asleep. I am thankful that he is able to go to sleep on his own for now, and that he is in his own bed!!! This way, we both get sleep!!

Well, I better get started on the med prep right now :) Thank you for your continued prayers!! And please keep Erik in your prayers. He is home alone, and sick, and missing his family and there is not ANYTHING I can do to help him :( It's tough and we miss him!!

Goodnight

Day +28.........out of hospital!!

2009-10-10T00:01:00.003-07:00

Hello Everyone!! Well, we are out!! YAY!! Yesterday was one of the LONGEST days of my life.....but we made it!! I think Karyna and I finally made it to bed at 2am!! To say last night was overwhelming would be a HUGE understatement!! After moving things from the hospital and all of the paperwork, I was exhausted. Then we had to still have the home health nurse come over to show me how to give him his 7 meds!! Not only do I have to just give them to him, I have to prepare them. Let's just say that I probably completed a whole nursing IV course in about 2 hours!! It was a terrible and exhausting night, but everyone lived and Dylan got the meds he needed. We got to the clinic this morning around 10 and at that time I had about 2 hours of sleep between Dylan not sleeping and all of the other medicine drama. When we got there, they were not surprised at my lack of sleep. They said that first night is always the worst. AND THEY WERE RIGHT! Tonight, there was about 10% of the stress and I was able to do everything that I was taught and did not freak out as much. It was almost fun.....ALMOST I SAID. :) Dylan has now 6 nightly meds, one of them is oral, and the others are all IV. He also has 3 other pain killer/nausea meds that I have to mix with saline in syringes if he happens to need them. It looks like a hospital in our living room and I think I have gone through 100 saline syringes already!! Good thing we have good insurance that pays for all of this fun stuff!!

Dylan is doing better with his ear infection. He is no longer crying incessantly, but only intermittently. He is still not feeling like himself. I have not seen a smile for days and we are lucky to see his eyes fully open....most of the time they are open just barely enough for him to see what is going on. The poor little man is just fighting so hard on the inside and outside!! The good news is that his white count continues to go up without the help of medicines, and he is holding onto his platelets and red blood cells longer. We will find out tomorrow if he is producing his own yet---it still may be too early, but with Dylan, and GOD, ANYTHING IS POSSIBLE!! He did well in clinic today. The pic of him in the chair is from today in clinic. He mainly slept (because he did not sleep at night!) and just relaxed while they gave him his medicines. We were there for 4 hours today and expect to be there about 6 tomorrow, if he needs any transfusions. The doctor is looking into dropping one of his meds that may be causing the grumpiness. It is a med that protects against Graft VS Host Disease, but the doc does not feel that D is going to get it. SOooooooo please pray that they can drop it. I would love that and it would make D feel so much better.

Karyna is going home for the weekend and Mellissa got here this afternoon! It is so great to have the help!! We are blessed beyond measure with amazing family!! I can always count on them and I love how all of our relationships have grown because of this tragedy. My other sister Mandy and her boyfriend Josh are coming tomorrow, so it will be great to have the company!! Everyone has been so supportive, both family and friends, and even strangers--I cannot say THANK YOU enough!!! Thank you for keeping us in your prayers!! Here are a few specifics:
--Pray for Erik, he is still really sick and may have to go back to urgent care.
--Pray for me as I am overwhelmed with a lot of responsibility and that I lean on others to help me. I have a problem--I don't like asking for help!! :)
--Pray for Erik and I as a couple that we can keep our marriage strong even with all of the stress
--Pray that Baby D starts to make his own blood products and that we can figure out a way to make him feel like himself again!!

Those are just a few for now!! We love you all!!

"My body and my mind may become weak, BUT God is my strength. He is mine forever."
--Psalm 73:26

Love, Michelle

Day +26.....Ear Infection

2009-10-07T20:00:00.006-07:00

***PLEASE SEE UPDATED ZIP CODE FOR CONDO, I WAS GIVEN INCORRECT ZIP FIRST TIME, IT IS 85745. THANKS EM FOR CATCHING THAT :)***

Hello Everyone.....baby Dylan has an ear infection. :( At least we know what has been causing him to be in pain and why he has been being so cranky. The past few days the Dr. has been boggled by what medicine is causing him to feel icky, and all along it was a "normal" pediatric problem--go figure! He has been put on another antibiotic that will hopefully help him to start feeling better tomorrow. These past few days have been REALLY tough. He has been whining and crying non-stop and has not slept very well. I AM SOOOOOOO THANKFUL that Karyna has been here to be my help mate, because I am not sure I would have been able to get through these past couple of days on my own.......let alone, this whole process. Erik is still sick and will not be able to join us for at least another few days. He thought he was feeling better yesterday, but woke up feeling horrible today with a bad head cold. Please pray that he will start to feel better soon--he misses Dylan soooooo much!! We are very thankful that the Lord has protected me from getting sick these past 4 months, and please continue to pray that God keeps the germs that are all around me from making me sick.

GOOD NEWS-We are scheduled to get discharged from the hospital tomorrow!! YAYAYAYAYAY!! I have been moving things into our new "home away from home", and we are looking forward to some normalcy. I was able to go grocery shopping today for the first time in a LONG time, and it was actually fun....I spent way to much money, but had fun!! It's hard when you have to get a lot of the basics and I'm starting from bare cupboards. My sisters are coming down this weekend and we are going to cook a few meals and then freeze them so it is easier for Karyna and I to have quick dinners. My sister, Mellissa, is one of the greatest cooks I know!! I am sooooo excited to have some of her yummy food. I am also looking forward to being able to spend some time with them OUTSIDE of the hospital and for them to spend time with Dylan.

For those of you who want to visit, we will have to try to plan something. I will see how this week goes with clinic visits and see how long I am usually there. I cannot have visitors in there with me, and I would hate to have you meandering around Tucson until we get out. But I am sure we can work out something. A lot of our family will be coming down on the weekends, so if you can do weekdays, that would probably work better. Please email me if you are planning on visiting so we can work something out :)

Please keep Dylan in your prayers tonight--his ear infection is really hurting him, and that is ON TOP of all of his other "issues". Also, please continue to pray that he keeps reproducing his white cells and starts to create his own blood products. Platelets are usually the ones that take the longest to make, but he should be making his own red blood cells soon. He is off of nuepagen, which is a medicine that helps him create white blood cells. Since he has been off the past few days, his WBC has dropped to 2500 which was to be expected. He is still out of the danger zone with his counts and he should continue to increase over time, just not as fast. Any count over 1500 is fully functioning and the doctor is very pleased with his progress. As long as we can get this ear infection under control, Dylan should be feeling well in the next few days!! I CANNOT WAIT!! We need our smiley boy back!!

THANK YOU for keeping baby D in your prayers!! We love you!!

Walking by Faith,
Michelle, Erik and Baby D

Day +24

2009-10-04T22:08:00.009-07:00

Hello Everyone! I hope you had a wonderful weekend! I know I did! We all had a great time at the wedding and everything went perfectly. Renee was GORGEOUS, Mark was handsome, and they are now Mr. and Mrs. Henderson! Congratulations guys!
Erik and I had the pleasure of going to church together on Sunday. It was the second time we have been able to go, as a couple, since Dylan's diagnosis....that's almost 4 months!! I have really missed going and it was great to see my church family and worship with them. Pastor Skip had Erik and I come to the front to talk about baby D. Erik talked a little bit and then handed the microphone over to me. How was I supposed to talk without crying? So I just talked while crying...I think people could decipher a few things that I said. :) After service we were given lots of hugs and a lot of encouragement--it was AWESOME--our support group is AMAZING!!!

Baby D is doing well. His white count is progressing beautifully!! On Sunday, it was 3000 and today he is at 4300!!! WOW!! Praise God!! He is really working in his little body!! Dylan has had a rough day today that has continued from Yesterday. He is very cranky, which is VERY unlike him, and he can not get comfortable or fall asleep. He has had probably 5 hours of sleep in the past 24 hours and is overly tired. He has been given meds to help him calm down and also Morphine for pain, but they do not seem to work. Please pray for him tonight. He needs some sleep so badly and his little body is trying to tell us something--we just do not know what! If only he had a diagnostic computer in him that could tell us exactly why he is hurting and what is wrong....poor little guy!! We gave him a bath at 5pm and he threw up some stomach acid after bath and that seems to have helped a little. He has been sleeping for the past hour and will hopefully get at least a good couple of hours of rest. He is still not interested in eating. This is disappointing to me, but I know it is normal for kids who have gone through this much chemo and transplant. It may take up to 6 months!! Please pray that his appetite comes back soon and that he can digest the food he is given. We were originally scheduled to get discharged tomorrow, Tuesday, but he is still needing the help of oxygen every once and a while and the doctors want him acting as normal as possible before releasing him. So we may be here for a few more days.

We found a place to stay for the next couple of months. It's a cute little condo with plenty of space for all of our "stuff". Babies come with sooooo much stuff! Ha!! And I guess I do too!! Many people have been asking for an address to send cards to, so here is our new address :)

Michelle Praskins
101 S Players Club Dr #28102
Tucson, AZ 85745

Some people have also been asking about how they can help tangibly with finances or gift cards. Right now, gas cards are needed. Gas is expensive and we want to be able to help our family come down and visit also--so gas cards would be greatly appreciated. I know for sure they have Chevron and Shell Gas stations. :) If you want to send a grocery store card, Fry's or Albertson's is good. THANK YOU!!!

Thank you to everyone for your encouragement through hugs, care packages, notes, cards, emails, and facebook messages! You guys help us more than you can ever know!! I hope to have great news tomorrow about going home soon! Until then, have a great EVENING!!

P.S. Please pray for Erik, he is not feeling well and went to urgent care today. Because of Dylan's delicate immune system, we have to be EXTRA careful about being sick. They tested Erik for the Flu and Strep, but the tests came back negative. They said that he may have the early stages of the flu and gave him some medicines that should keep it from getting worse. He has not seen D in 2 weeks and is disappointed and sad, but he should be able to come down later this week. Thanks for the prayers!!
Love,
Michelle

Day +21....2700!!!

2009-10-02T19:02:00.003-07:00

Hi guys!! I am writing this update from Phoenix at my home computer....and it feels very strange. I am home for the weekend with my hubby for my brother's wedding!! Congratulations Mark and Renee!! They will be getting married Saturday morning, and we are all very excited for them. It will be a fun time of celebrating and seeing family and friends. We are very sad that Dylan will not be a part of the celebration, but he will have everyone there cheering him on! Renee, the gorgeous bride, will be wearing a Dylan bracelet on her ankle and all of the groomsmen will be sporting the stylish orange accessory under their jackets!! So, in a way, Dylan WILL be there. By the way, if you have not gotten a cool Dylan bracelet and would like to have one, just send us self-addressed, stamped envelope to the address in the right hand column! We would love to send you one!

This weekend Dylan will be spending some quality time with his Auntie Karyna. She has been such a blessing and a lifesaver! She hates to be the center of attention and will probably not like me saying all of this about her--but oh well!! She deserves the praise! She has been switching off nights with me, so that we both get a good nights sleep every other night. This is not something that I have asked her to do, but something she insists on! She is amazing and we are beyond thankful for her! I LOVE YOU KARYNA!!

Dylan is continuing to increase his WBC every day!! Yesterday he was at 2100 WBC, and today--2700!! Way to go Dylan! He is still on the oxygen, and the level is at the lowest possible--0.1--but he still wants to hang on to that extra help. He has been less congested lately and the Dr. feels that once that goes away, then he will be fine. We attempted to feed him yesterday. He has been on TPN for about 3 weeks, and has not had any bottles. We tried feeding him a little bit of water first, to see how he would react, and he did not like it too well. Today I fed him some soy formula mixed with rice cereal and he seemed to enjoy it. He drank about an ounce, and then waited for me to leave until he threw it up on Auntie Karyna....at least he tried :) We will keep on trying! He will eventually want to eat again. Some kids take as long as 6 months to want to eat again and to get back to normal eating habits. The Dr. said that all of the kids are different and babies always seem to do better with eating. Please pray that Dylan's appetite comes back quickly so he can get off of the TPN.

We are still scheduled to go home early next week--YAYAYAYAY!! We have found a place to live that is close to the hospital, but still has a "normal" feel to it! We are excited to get out of the hospital, but apprehensive at the same time. Although we will be leaving, we will still be coming to the hospital daily for clinic visits that can last anywhere between 4-8 hours!! FUN FUN!! This is where he will get his blood drawn and get any transfusions or medicines that are needed. 90% of his medicines are given by IV, so I will be in charge of being nurse mommy again, and will have to administer the meds at night. SCARRRRYYYYY!! Although I feel that I am competent enough to handle this task, it is always frightening knowing that I am injecting drugs STRAIGHT into his bloodstream!! May God protect me from ever making a mistake! The nurses have been showing me how to extract meds from the glass medicine vials with a needle and syringe--it's a lot of fun! BUT I am sure that I will end up poking myself somehow...hopefully not. We are hoping to be able to get D on a schedule along with ourselves. It will be nice to be able to cook dinner once again and go for a walk outside. These things may sound so simple, but they are pleasures that I have not had the past 3, almost 4 months!!

Since I will be here for the weekend, I will not be updating the blog until Sunday night :) So don't worry if there are not any postings until then...if something is wrong....we will post it! In this case, no news will be good news!!

Thank you all for being so supportive!! It's amazing to me how many people read and follow Dylan's blog and listen to me babbling on! Dylan is loved!!

Love
Michelle

Day +19...still going strong!

2009-09-30T22:27:00.003-07:00

Good evening or good morning....whenever you happen to be reading this. We have some wonderful news about Dylan's counts...they are continuing to go up at a steady pace!! It is very exciting!! Yesterday he was at 900....and today he was at 1400!! God is really working in his little body...PRAISE GOD!! We still have a LONG road ahead of us, but we are on the right track.

Part of me, the mom in me, just wants to know for sure what the outcome will be. Will he be healthy someday? Will he have any problems? Will he survive this journey? But God reassures me that today has enough worries of it's own. I cannot worry about the future, about tomorrow, but I have to focus on today....as hard as it is. I would just love to know!! Ahhhhh!! So that was my little tangent for today. It is something that I have really been struggling with lately. I just want to know--for certain--if my baby is going to be alright, and survive this thing. All I know for certain, is that I have an ALMIGHTY, POWERFUL, LOVING God, who is watching over every tiny detail and in control of it all. I put my faith in Him. I believe that He is healing Baby D this very second-He is more powerful and more magnificent than I can even comprehend. Thank you Lord for taking care of Dylan!!!

Ok, well back to Dylan. He is doing 100% better than he was on Saturday and Sunday. His breathing is back to normal, but for some reason he still wants to hang on to that oxygen and does not want to give it up quite yet. We are hoping to be off by the end of the week. He is still sleeping a lot, but it is just his body's way of playing catch up. When he is awake, he is soooooo smiley!! And he even giggles every now and then. He is all smiles until I pull out the camera! HA! We have ruined him! He dislikes the camera very much and almost glares at it every time! It is quite hilarious! So I have to sneak in pictures when he is not looking...I wish you could see his BIG smiles!!

Well, I am off to bed. Please continue praying that Dylan's body keeps making progress daily and he can feel like himself more every day!! You guys are amazing prayer warriors and God is hearing each and every one of the prayers!! We love you!!

Walking by Faith,

Michelle, Erik & Baby Dylan :)

I could not sleep.....

2009-09-29T00:51:00.003-07:00

I am at the Ronald McDonald House trying to get a good night of sleep, while Auntie Karyna is with my precious baby. I don't like being alone. I want to be with my baby, and I want to be with my hubby. I was having a hard time falling asleep....just thinking about everything, so I turned on my IPOD and started shuffling through songs...this one came up...one of my new favorites...HEALER, by Kari Jobi. I just got on my knees and cried to God....only He knows how I feel, and only He can heal my broken heart. Anyways, I hope that these lyrics might encourage you as they have encouraged me...with God, there are no limits.

YOU HOLD MY VERY MOMENT
YOU CALM MY RAGING SEAS
YOU WALK WITH ME THROUGH FIRE
AND HEAL ALL MY DISEASE
I TRUST IN YOU, I TRUST IN YOU

I BELIEVE YOU'RE MY HEALER
I BELIEVE YOU'RE ALL I NEED
I BELIEVE

AND I BELIEVE YOU'RE MY PORTION
I BELIEVE YOU'RE MORE THAN ENOUGH FOR ME
JESUS YOU'RE ALL I NEED

NOTHING IS IMPOSSIBLE FOR YOU
NOTHING IS IMPOSSIBLE
NOTHING IS IMPOSSIBLE FOR YOU
YOU HOLD MY WORLD IN YOUR HANDS

YOU'RE MY HEALER

If you get a chance, listen to this song sometime. It is absolutely beautiful!! He is our healer, and nothing is impossible for Him. Dylan is living proof! Goodnight.

Day +17.....a day of rest

2009-09-28T22:10:00.005-07:00

Hello!! Today we are at 800 WBC!!! Woo hoo!! Way to go baby Dylan!!! He is doing so well with his counts....now all we need to do is to get the breathing thing down and we will be good to go!! Seriously, good to go.....out of hospital! That is the plan. Until then, Dylan will be working on breathing on his own.
Today he has done much better. His oxygen has been turned to a lower level and his breathing has been consistent throughout the day. His resp rate has been between 50-60 (we want it under 50), but he still needs the help of the extra oxygen. His little body is so tired from overworking itself the past couple of days, that he has been sleeping almost the whole day. He woke up during bath time, which is his favorite part of the day, but then went right back to sleep afterwards. Then he woke up this evening for about 30 minutes. And those were my favorite 30 minutes of the day. He was being really silly and REALLY smiley!! Such a blessing!! I think all of the smiling wore him out, because soon after, he started dozing off, and was quickly back asleep. We enjoyed every second of the awake time and will hopefully get some more time tomorrow. For now, we are thankful that his body is able to rest and catch up on some much needed sleep.
Thank you for your prayers tonight! Please pray that he can get off of oxygen completely, and breathe on his own. I can't wait to see what the counts are tomorrow!! It's so exciting!! God is creating new life inside of baby D....simply amazing!! Have a GREAT Tuesday!!

Love,
Michelle

New Layout, courtesy of Kelly

2009-09-28T14:05:00.002-07:00

Hey Guys!! What do you think of the new layout? I wish I could take responsibility for it, but I cannot. The creative genius behind the creativity is Kelly Oxborough. She found our blog from another person's blog, and then volunteered her creative services to "spice" it up!! God provides in so many unexpected ways!!

Kelly also has a side business of her own where she makes affordable invitations for every occasion imaginable. I was looking at her samples online and they are beautiful!! So, if you have a need for invitations, check out her site.

www.yourlifelongmemories.com

Thank you Kelly for spicing up our blog! We love it!!

Pampered Chef Fundraiser by Arlene Wilhoit

2009-09-27T19:02:00.002-07:00

Here is some info from Arlene :)

Here is where you can help. By purchasing Pampered Chef products, you will help to raise money to cover costs of medical bills and so on . I know most of you may not know them, but they need all of our help! If there is any Pampered Chef item that you need, now is the time to buy it, even if its just 1 item. I will not be making any money from this (I will be donating all of my commission to them also), and this is truly being done to help the Praskins family.

There are a couple of ways to go about ordering.
1. You can email me your order and I will have it shipped directly to your house
-or-
2. You can visit my website. www.pamperedchef.biz/cooking4emma Choose "shop online" in the bottom left corner. You will be prompted to type in a name...Baby Dylan is all you need to put in.

I know that right now times are tough, so we need as many people to hear about this as possible. I need you to send this to everyone in your address book. Please ask everyone to continue to forward this on.

Sincerely,
Arlene Wilhoit
Your Pampered Chef Consultant
602-446-1461
cooking4emma@hotmail.com
www.pamperedchef.biz/cooking4emma

Without you I have no business in the kitchen!

Our tools will change the way you cook, and our business can help you live your dream!
Call our opportunity line for a pre-recorded message 1-866-837-8032 access code 1095577
AND THEN CALL ME

Day +16 ...still on Oxygen

2009-09-27T18:27:00.003-07:00

Good evening everyone. Thank you for praying for us last night. It was a bad night. I think I just needed to cry and last nights events put me over the top. There's nothing as horrible as watching your baby fight to breathe. His respiratory rate got to be over 100 a few times, which is WAYYYYY higher than it should--normal should be around 50. His little lungs were working overtime all night long. This morning he was able to get a little bit of a respit after we sucked some huge boogies out of his nose. He is still congested, but not as much. The fluid overload is playing a big part in the labored breathing. His weight has gone down about 1 pound since yesterday afternoon and that has helped release some of the pressure. He is still very uncomfortable when he is awake. He has been on Adavan around the clock since yesterday and that has seemed to help him. He has to stay as calm as possible, or the breathing will just be intensified and harder for his lungs to keep up. With the help of the released fluids and boogies, Dylan seems to be stable at this point. His resp. rate is still high, around 70, but much better than 100+!

The good news from today is that his WBC is at 700!! We are so excited that his body seems to be responding well to the transplant (besides the breathing problems). We asked the Dr how he knows that it is the donor's cells reproducing and not Dylan's. He said that in the rare case that it happens, the child's WBC comes back much slower and would not be showing Dylan's numbers. He said that it would take at least 30 days to get to 400-500, so he is confident that Dylan's growth is from the cord blood. PRAISE GOD!! It's incredible how the human body works!! Absolutely amazing!! The Dr also said that if Dylan is stable in the next week and can get off of oxygen, then we can be released as soon as a week from Monday!! That would be AWESOME!! PLEASE pray that his body is able to release the mucous and fluids so that his breathing can get back to normal....that is a HUGE prayer request. We are hoping to have an uneventful night, full of sleeping!! We need it!! We are thankful for the wonderful nurses that we have here to take care of us! God has provided some really knowledgeable and fun people to take care of Dylan and not to mention his genious Dr and his staff!! We love you guys!! And we miss our St. Joe's nurses and staff....it's crazy how attatched you get to everyone....but I guess it's not a bad thing :)

I am going to be posting some info on a fundraiser and also a cancer walk if anyone would be interested. Details later to come. As always, Thank you for your love and support! I hope you had a great weekend and are ready for the crazy week ahead!! We love you all!! Even those of you whom we have never met ;)

PS...also be looking forward to a NEW LOOK to the blog! A wonderful woman, Kelly, has volunteered her serviced to make over the blog and it's going to be adorable!! Thank you Kelly....you are AWESOME!!

Under His Wing,

Michelle

Day 16: Labored Breathing

2009-09-27T09:03:00.003-07:00

Dylan had a very rough night and continues to breathe very heavily.... his respirations are very high and the doctors are concerned that if it continues at the high rate, his lungs may give up and he would have to be intubated. Another chest x-ray was taken and his lungs are basically clear....so he doesn't have pneumonia. A respiratory therapist came in and sucked some more'buggers' out of his nose hoping that would help unblock his airway and help his breathing. A blood test was taken to check the amount of oxygen in his blood. Please pray that Dylan's body will calm down and that his respiration rate will reduce to the proper level so he will not overwork his lungs, forcing him to be intubated. We love you all.

Day +15....movin on up!!!

2009-09-26T18:24:00.003-07:00

Good Evening everyone.
Hi. This is Erik. Today has both good and challenging news. Dylan is having a hard time breathing today and is very restless. The fluids in his body are causing extra pressure on his lungs and making it difficult to breathe. He also has some mucous in his right lung. Please continue to pray that his body will handle the many fluids he is receiving and that he can breathe easier. It is a delicate balance of receiving the needed fluids without overwhelming Dylan's body. It is going to be another long night for Michelle as she cares for Dylan. The good news is that Dylan's white blood count is continuing to go up..... it was 0.4 this morning and went up to 0.6 this evening. Dr. Graham is very encouraged about this. We are praying that they continue to go up.

Day +14....quick update

2009-09-25T21:00:00.002-07:00

Good evening everyone!! GREAT NEWS!! Dylan's WBC went up to .2 or 200 this morning!! This is a huge milestone! We serve an all-powerful and amazing God-and we praise Him for this victory!! This afternoon's blood tests showed his levels at 300, but that will most likely go down in the morning....but we will see!! Thank you for your continued prayer. Dylan is making progress and we could not be more excited about it!!
One more thing to add to your prayer list: Dylan may have an infection in his gut. Last night he was up all night with gas and painful bowel movements and those continued on throughout the day. He was pooping almost every half hour and every time he did, he cried in agony. The poor little guy was in so much pain. We were able to increase the morphine dose to help with the pain, but he still wakes up crying every time he has to go. They took samples today in hope of finding out what could be causing the irritation. They also put him on a medicine that will combat a common form of infection, C-Diff. Please pray that this irritation will go away quickly and that he is not in a lot of pain tonight. He really needs to get some good uninterrupted sleep, so that his body can heal.
Karyna is staying with Baby D tonight, so I have to make this short so I can get some sleep! Yay!! Daddy, Grandma, and Grandpa are coming tomorrow, so we will be having a fun filled day spending time with them. I hope to have great news about his counts tomorrow!! As always, THANK YOU THANK YOU THANK YOU THANK YOU for your prayers!! They are being answered!

Love, Michelle

Day +13

2009-09-24T19:36:00.003-07:00

Hello all! Well, I do not have any exciting news today :( This morning, Dylan's WBC was still at .1 like yesterday and went up to .2 this afternoon. It is normal for this to happen. The doctors do not get excited until they get the same numbers two times in a row. Sooooooo....let's just keep praying that tomorrow it will be at .2 or higher. There is no pre-set time when counts go up. Every person is different. We will just keep praying and praying, knowing that God is in control of every single little detail, down to the number of cells that grow each day-and HE is orchestrating it!! So for now, we trust that God is working in his little body. At day +60, they start to do engraftment tests to see if the transplant has worked. The tests will show how much of his cells are his, and how many are the donor's. We want them to be 100% donor and 0% Dylan. Until then, we wait for his counts to come up. We need prayer that he does not get GVHD (graft vs host disease), and that he can avoid all of the other complications that can come with transplant.

Today has been a good day so far. I was blessed by getting 10 hours of sleep last night!! OH WOW!! Thank you Karyna!! I was a new woman this morning and even dried my hair and put on make-up!! Woo hoo!! Karyna is awesome and storing up a lot of treasures in heaven!!
Dylan seems to be feeling better and has been smiling a little bit more. He received more platelets yesterday and is getting some more tonight. It is perfectly normal to get this many platelets after transfusion and he will continue to get the many transfusions until he starts to make his own platelets. Here's a fun fact for you--Your body makes new platelets for itself every 3 days. Did you know that? No wonder D has to get so many transfusions-he is getting someone's half-used platelets, and if his body does not like them, then it disposes of them and asks for more. I learn something new every day.

We will probably be staying in the hospital for another 2-4 weeks. Dylan will be healthy enough to get released from the hospital when his counts are stable and increasing....OH how I cannot wait for that day!! After we are out of the hospital, we will have to come in daily for clinic visits. The first two weeks of visits can last anywhere between 3-6 hours, depending upon how many medicines he needs and if he needs transfusions. Then from there, also depending on his status, his visits will get shorter and less frequent. We are hoping to be able to go home to Phoenix before Thanksgiving!! We will probably have to see Dr. Graham once a week for almost a year! So that means driving to Tucson once a week, every week, until next year. We have a LONG road ahead of us!! But as long as we have that road to travel, we will be happy :) That is a brief synopsis of the next few months and what may be happening...of course, all of this is subject to change. I am just excited to get out of the hospital!! Even though we will still stay in Tucson and I have to go back to the hospital everyday, we won't be living at the hospital, and life will be a little more normal.

Thank you to each and every one of you who gets excited everyday to see what God is doing in little D's life. It's amazing to see how God has used Dylan to touch the lives of others...and we love to hear the stories, so thank you for sharing them with us. We appreciate all of the love, prayers, and support that we receive everyday....you guys are amazing!! We love you!!

Not walking this road alone,
Michelle, Erik, and Baby Dylan

Day +12

2009-09-23T21:34:00.002-07:00

This how Dylan likes to have his oxygen--airing out his forehead :) He is not a big fan of the oxygen and the little prongs that have to go in his nose, but he is doing a lot better with it than before.

Today is DAY +12......WOW!! I cannot believe it has been 12 days since transplant!! These past 12 days have been rough....they have been draining....they have been painful....but things are starting to get better!! On Sunday, Dylan's white blood cell count (WBC) was .05--which translates to 50. Yesterday, his WBC was at .1--which is 100! This was exciting to us, but the doc said that he would not be excited until he saw 200. We were hopeful this morning that we would get great news of his counts going up....but they were still at .1 or 100. When I heard the counts this morning, my heart ached and I was disappointed. I want so badly for him to start getting better, and get on the road to recovery. The doc says that most kids start to get their numbers up around day 14, but we were all hoping to see some improvement sooner. This evening, we got an answer to prayer!! They did some blood draws this afternoon and checked his counts again, and they were at 400!! WOOOOO HOOOOO!!! Unfortunately the doc did not believe the results so he had the lab re-run the tests. The second results came back in at 200!! We are still very excited about these results and are praying for even larger numbers tomorrow. If they do not change, we are still thankful for increase. We continue to pray that God will heal Dylan, and heal him quickly. It's going to be like Christmas morning, every morning, as I wake up, anxious to hear the results of the morning blood test. Please pray that tomorrow his counts stay at .2 or get even higher....that will be such a wonderful thing to look forward to! God has been so good to us. That news today was one of the greatest things that I could hear!

Other than the exciting news, today has been a typical post transplant day. Dylan seems to be doing better with each passing day. He continues to have trouble breathing because of the fluids, and has been on oxygen most of the day. He is finally realizing that he has to keep the oxygen on and has stopped yanking it off every five seconds. Now he only pulls it off every hour or so...he is pretty sneaky. His throat is healing well and the doc feels that he will probably be eating again next week! AWESOME!! It's so strange not feeding him all day...very strange. He is still having a lot of pain INSIDE his body. He is very sensitive to touch because of all of the fluids he is retaining, so I have to be very careful when I am holding him. He also screams in agony every time he has to poop. It's heartbreaking. This pain is coming from the sores that are INSIDE his GI tract. These will go away within the next couple of weeks as his body gets stronger, but it is quite painful for him right now. Please pray that we can get through the next week or two with as little pain as possible.

God gave me a HUGE blessing today--Dylan was laughing and smiling in his sleep...it almost made me cry!! He is infamous for doing this, but has not done it for a LONG time!! I am so thankful for the little things....and smiles are my favorite!! Although this is a very trying time for our family, it is teaching us a lot. God has taught us how to lean on Him for EVERYTHING, and I cannot imagine going through one day of this without Him. I feel thankful for so many little things now. I appreciate the little things now, and I notice them. I look forward to the simple things. Life is not all about me....it is about HIM!

Thank you everyone for all of your prayers!! I hope to have wonderful news for you tomorrow!!

We Love you!

Michelle, Erik & Baby Dylan

DAY +10.....and counting

2009-09-21T22:25:00.003-07:00

Good evening!

Dylan is now on oxygen. He has been on oxygen on and off since yesterday at 2pm. The overload of fluids is making it difficult for him to breathe. If you think of the way you feel after eating a HUGE Thanksgiving dinner or after drinking a lot of fluids and multiply that by 10--that is how he feels. We have to be very careful of how we pick him up and how we position him. He will probably have to be on oxygen the next couple of days. Sometimes he does really well on his own, but as soon as he falls asleep, his levels drop. Please pray that his breathing continues to get better and it does not get worse. If the fluid gets to be too much for his body, it could leak into his lungs, and then we would have a whole other problem on our hands. Soooooo, let's just pray that does NOT happen. Dylan weighed in at almost 17 pounds today!! And 3 of those pounds are fluids....CRAZY!! The Docs are doing all that they can to limit and decrease the fluids, but they are all medicines that he needs. He is still on morphine, but at a lower dose, and that seems to be working. He has not gotten any more side effects and the sores that are in his throat seem to be getting better. For now, he is just extremely uncomfortable in his little puffy body....but it will all be better soon.

Karyna got into town today, and we were able to show her our new pad. We are so thankful and grateful for here being here! We are also thankful to Jalayna and Gary (Erik's other sister and her hubby) for letting us steal their babysitter.

Well, we have a long night ahead of us so I'm gonna get going. I'll update more later.

Thank you again for praying for our little guy,
Love, Michelle

DAY +9

2009-09-20T13:48:00.002-07:00

Hello Everyone!! We hope you had a GREAT weekend!! Erik and I had a WONDERFUL weekend away from hospital and were able to enjoy spending some much needed time together. I think marriage can be hard in normal circumstances, then add in a sick baby and months living apart from each other....it can be VERY stressful and difficult. We enjoyed a wonderful 4 course dinner at our favorite restaurant, The Melting Pot. If you have not been there, GO! It's well worth the money and very romantic and fun! We try to go at least once a year, but it is pricey, so we save it for special occasions...and this one fit the criteria! While we were away, Baby D was able to spend some quality time with my mom. We are sooooooo thankful to her for staying the weekend with him.

Now back to Dylan. Not too much has changed since Friday. He is still really swollen from the fluids. They have given him medicine to help him pee out some of the fluids. They are also trying to limit his fluids as much as possible, but he has a lot of medicines he needs, along with his TPN. He has also gotten a lot of transfusions since transplant. This is expected and completely normal, but the transfusions also add to the fluids. Since transplant on the 11th, he has gotten 2 blood transfusions and 5 platelet transfusions with another one tonight. WOW!! That is a lot of blood! (Thank you to all of you who donate blood on a regular basis!!) His throat continues to heal from the sores, but it's hard to tell since we cannot see them. He has been wanting his binky a lot more and seems to enjoy the sucking motion, so this tells us that his throat must be getting better. His tongue is less swollen, but he is still having trouble swallowing his saliva because it is so thick. This should be going away toward the end of this week when his counts start to come up. PLEASE, PLEASE, PLEASE, pray that his counts start to come up VERY SOON!! His body should be starting to reproduce cells around this time. They can see that his body is starting to reproduce, but only on a very small level, a level that the computer does not even detect. They may discontinue one of his antibiotics tomorrow if they do not see an increase. Sometimes the antibiotics can hinder the growth. The Doc is not worried about Dylan's progress as of yet and is hopeful that he will continue on track this week. Dylan's overall countenance is getting better also. He seems more happy and in less pain. He is still on a constant morphine drip, but it is at a very low dose. When we got back to the hospital today, Dylan woke up and gave Daddy and I some huge smiles!! We missed him so much this weekend and the smiles were a wonderful present!! We tend to take them for granted when he is feeling well because he smiles SO MUCH!! So during the bad times....every smile is CHERISHED!!

We have a big week ahead of us with a lot of recovering to do. Dylan has been such a trooper through this past week and a half, and we are really looking forward to having our happy baby back and for him to be feeling better. Please pray for a miraculously quick recovery!! With God, nothing is impossible!!

Walking by Faith,
Michelle, Erik & Baby Dylan

Day +5

2009-09-16T23:23:00.007-07:00

We are at day +5!! I post the pictures, both sad and happy, to show you the reality that we are living in everyday. There are happy moments, and also very sad ones. I like to look back at the pictures and see how far God has brought us in this journey. We are now in a bad week.....a lot like his first week in the hospital. I was not sure how we were going to get through that first week. It was horrible and words cannot describe the pain that we experienced watching Dylan go through all of the tests, and pokes, and to face the truth about the cancer that was trying to take his life. BUT God had bigger plans....and he HAS bigger plans for our Dylan. We got through those weeks and the past few months leaning on God's strength, and we will get through this too!! D amazes me everyday with his strength and the love he has for everyone around him. We are excited to see what God has in store for him!!

These pictures show a few of the activities of Dylan's daily routine. Every day he gets a bath--and this is his favorite part!! Most of the time, he would be smiling up a storm, but for now, the smiling is saved for extra special times :) After bath, is dressing change time. This is NOT his favorite!! Because his dressing gets changed daily, they have a "second skin" bandage all around his lines so that the tape can stick to that, and not his skin. Even though they try as hard as they can to protect the area, it still gets irritated. After cleaning both lines, new bandages are put on, and the drama is over. He also gets mouth care every 4 hours. This is when they swab his mouth with a sponge with antiseptic on it to clean out his mouth to disinfect it as much as possible. He is not a big fan of mouth care time, but usually takes it like a man (or actually better than most men would! ha!). Those are usually the big events of the day....exciting huh! The rest of the day consists of relaxing, sleeping and cuddling....we like those parts!! So far, Dylan's side effects seem to be staying the same. He is really puffy (swollen) from all of the fluids he is getting--which you can probably see in the pictures. His little outfits that are usually loose, are a bit snug right now, but that will go away. He received another round of platelets tonight. That was his second round of platelets since friday, but it is not unusual to get a lot of platelets during the early stages of post transplant.

Erik's mom and aunt came to visit today! (also my mom and aunt, just easier to describe that way :) I was able to get another much needed nap!! OHHHHH how I am spoiled!! But they came just in time....because earlier that morning I was teetering on the brink of going delirious and looked like a walking zombie. Grandma wanted to save some of Dylan's hair so we could compare the color with whatever grows back--so the fourth picture is of Dylan's first haircut!! He did great! HA! I do not expect his hair to last through the weekend, but we will see! At least now we have a sample in a baggie :)

Friday is Erik's 29th birthday!! YAY!!! And for his birthday, HE has surprised me with a nice weekend at a resort in Tucson!! I told you I am spoiled!! The best part is that we will be only 8 miles away from Dylan....and not 3 hours away! I MAY be able to relax this time. My mommy is coming down for the weekend to spend some time with Dylan, and he is really looking forward to the one on one cuddle time!! We are so blessed to have our family close to us and to be so supportive!! WE LOVE YOU ALL!!

Please continue to pray that Dylan's pain will stay under control and that he can get through this week with as little pain as possible! Pray for strength for us who are taking care of him, because it is difficult to watch him suffer. Pray that he continues to avoid some of the worst side effects and that his body responds well to the new cells. Thank you for all of your love, support, and prayers!!

Love
Michelle

D is 5 months old today :)

2009-09-16T23:09:00.005-07:00

Baby Dylan is 5 months old today!! Happy 5 months little guy!! This is not where we would ever think we would be at his 5 month mark.....BUT, he is HERE!! He is alive, against all odds, against the "statistics" and unknowns.......he is here and teaching all of us new things everyday!! He is persevering through the unknown...and why?...because he is in the hands of God....and God will never let go!!

HAPPY 5 Month Birthday Baby Dylan!! We love you soooooo much!!

Day +4.....time for a morphine drip

2009-09-15T17:18:00.002-07:00

Good afternoon :) Today has been a rough day. Dylan did not sleep very much last night, but was able to get a couple straight hours of rest this morning along with mommy!! He is in a lot of pain. His little body is hurting him on the inside and it's so hard to tell what is wrong. He just whimpers, grunts, and cries...a cry that is almost unbearable to hear. BUT, there is a solution!! Morphine to the rescue!! He has been getting Morphine almost around the clock, so the Doc has decided to put him on a constant drip. It is a very small dose, but it is constant, so it should help keep his pain under control. If he is having a bad hour, he can get an additional dose to combat the pain. He continues to have thick mucous in his mouth and has not been coughing it up like before. Now we have to go in after it with the "sucker" (that's the technical term). Needless to say, he does not enjoy the sucker and fights it with all the energy he has. He is now hooked up to a pulse-ox machine constantly for monitoring(it is machine that monitors the oxygen in his body and his pulse). His breathing is affected by the mucous and we do not want the mucous to completely block his airway, so they have to monitor him closely. With the pulse-ox machine, Dylan is now connected to 11 cords!! Yes 11!! And that may not be the max. I will take a picture of the IV pole to show you guys on the next blog. It's amazing to me that all of those medicines and antibiotics are all working together to make his body better. It is an organized mess that comes with him anywhere we move. We call the IV pole his "friend". A friend that is always there, helping him sustain life. It also has all sorts of lights and glows beautifully in the dark so Dylan likes it! He is always mesmerised by it.

For now, Dylan is not eating anymore. He hardly even wants his binky. Along with the sores in his throat, his tongue is swollen, so it is hard for him to suck on anything. Every once in a while, he still tries to stick his hand in his mouth. He has been sleeping on and off for most of the day. He woke up a few times, but because of the morphine, he was still a little groggy. In the pictures above, you can see that his left cheek and eye are both really red and swollen. He has been rubbing his eye and cheek incessantly and it has caused a rash. We have been putting ointment on it every couple of hours, but it will not heal because his counts are so low. Please pray that his skin does not break on his cheek. His eyelid is already scraped up and will take a long time to heal. His hair looks like it is going to start coming out soon. Little hairs come out every time I comb my fingers through it.....but it's ok....he will grow it back and in the meantime, he will be sporting a cute bald head. Usually the eyelashes and eyebrows come out also, so we will see what happens. His little baby bum is still rash free!! Praise God!! We are sooooo thankful for this and we continue to pray that he can avoid this painful side effect!! The Doc said that the side effects should come to their peaks in the next few days and then we will start to see him getting better from there...we just have to make it through the weekend!

We got some really great news today!! My sister-in-law,Karyna, is going to be joining us next week!! WOOOOOOOO HOOOOO!!! We are sooooooo excited!! Now I will have a companion to talk to and hang out with and might be able to get a litte more rest :) She has such a servant's heart and we are blessed to have her help us out!!

Please continue to pray that the donor cells start to work with Dylan's body quickly and that they "get along" well!! After the cells start to engraft, then his body will start to make it's own blood products and he won't need as many transfusions. One little boy who is 14 months old is going home tomorrow and he is at day +21....so we are hoping and praying for the same type of recovery!! Or faster!! NOTHING is impossible with God!! We will not be able to go home-home, but at least to get out of the hospital :)
Well, I think that is all for now...I will leave you with the promises that God gives us in His Word....they help get us through every moment...and Erik's grandma was kind enough to write them out for us :)

I WILL...be your God
I WILL...love you
I WILL...rejoice over you
I WILL NOT...remember your sins
I WILL...pardon you, I WILL save you
I WILL NOT...forget you
I WILL...strengthen you
I WILL...bless you
I WILL...uphold you
I WILL...help you
I WILL...carry you
I WILL...hold your hand
I WILL...go before you
I WILL...go WITH you
I WILL...lead you, I WILL guide you
I WILL...hear you, I WILL answer you
I WILL...restore health to you, I WILL HEAL YOU!!!

There are many more, but these are promises from God...we hold tight to these promises.

Walking by Faith,
Michelle, Erik & Baby Dylan

Day +3

2009-09-14T19:57:00.002-07:00

Hello from Tucson!! I had a GREAT weekend with my sisters and was able to relax....a little. I really needed to get away, but at the same time, it was so hard to be gone. I am thankful for the time I was able to spend with my best friends (my sisters), and we had a nice time at the hotel relaxing in the lazy river and being silly together.
We are now at day +3!! 3 days down....97ish to go....we are getting closer!! Day +1 went well. Dylan just slept most of the day and cuddled with Grandma. Day +2 is when the fevers started. He had fevers on and off most of the day and once it went over 102 degrees, they took blood cultures from each of his lines (they take the cultures to check for infections). So far, the cultures have been negative for bacteria, but we will find out tomorrow about the final verdict. The nurses were excited when he got a fever, which sounds strange, but a fever means that something is going on in his body. We need him to show some signs of side effects in order to know that the transplant is working and that the chemo did it's job. So in some ways, the more side effects the better. Regardless, we are still praying that his body is protected as much as possible from the painful side effects. He is showing some signs of mucouscitous. He has been coughing up huge amounts of thick mucous that has been getting stuck in his throat. It is hard for him to cough it up sometimes, but he always feels better afterwards. The chemo kills the cells in his saliva glands and it causes his spit to become thick and hard to swallow. The Doc thinks that the sores have probably begun to form in his throat. He has started to get small white bumps on the inside of his mouth that may be the beginning of mouth sores. His bum is still free and clear of any sores, rashes, or irritation--and we are praying that this is a side effect that he can escape, because it can be very painful, especially for babies, because of their diapers. He is still holding on to his hair--but that is expected to be gone in the next week or so. The Doc says that the side effects should plateau within the next 5 days, and then will start to get better from there. Now, we are just trying to get through each day with as little pain for baby D as possible. He is getting Morphine for pain and it seems to be working well to control the pain and discomfort, and allows him to sleep. He sleeps most of the day and night. He does not sleep quietly though, and wakes up often. He is a grunter. One of the night nurses calls him her bear. He is quite loud! But he is uncomfortable, and you can tell when he finally settles down, because the grunting quiets to a minimum. Because of all of this, sleep is....well....sleep is close to impossible at night. This is a struggle and a HUGE prayer request for me!! Last night I laid him in his bed a few times, but he could never get comfortable and it broke my heart to hear that "painful" cry of his. Soooooo he ended up sleeping on me or on the side of me most of the night. Please pray that I can sleep with him sleeping on me and waking up so often. God has truly protected me from getting sick over the past 3 months, and please pray that I continue to stay healthy, especially with the lack of sleep. I will try to post some pictures tomorrow, but I have to warn you that he will not be smiling in any of them. I think I have only seen his little eyes open once today, and he was definitely NOT smiling. It is heartbreaking and I am praying for a smile or at least a smirk tomorrow. Thank you for continuing to keep our family in your prayers....we need them, and appreciate it more than you can ever know!!

One more day down.....talk to you tomorrow!!

In His Grip,
Michelle

The Transplant is Complete!!

2009-09-11T15:18:00.005-07:00

Thank you everyone for praying today!! The whole process was very anti-climactic :) They basically brought in a syringe of cord blood (that was previously frozen) and then it was given through his broviac. The nurse pushed in 60cc's over about an hour while I held Dylan in my lap. They had him hooked up to monitors to check his vitals every 10 minutes. His blood pressure went up during the transfusion, but that was expected. There was a short time when they put him on oxygen because his stats came down a little bit, but that was due to him being frustrated and crying. There is a preservative in the blood (since it is frozen until use) and it makes the recipients breath smell like creamed-corn. So while Dylan was getting his cells, he was breathing out the creamed-corn breath!! The whole room was filled with the aroma--it was quite strange, but interesting :) So if you would like to know what his breath smelled like, then open a can of creamed-corn and take a WHIFF!! Ha!! I know that some of you are going to do it! :) He is now resting comfortably on Grandma (Erik's mom) and is trying to get some sleep. He has only eaten once today and does not seem very hungry-so his eating days may be coming to an end for a while. He will be put on TPN (total nutrition through IV) tonight, so we will not have to worry about him eating.
THE NEXT STEP:
The next step is the waiting game.......wait.....watch....and pray. The new cells will start to engraft in about 7-10 days. That is when they will be starting to reproduce and fill his marrow with new healthy cells. The final goal is to have 100%donor cells and 0% Dylan cells. This whole process will take about 3 months to be fully grafted. The side effects will be coming soon-usually within 3-5 days. His mucous membrane throughout his GI tract will be stripped, and because D does not have an immune system right now, he will not be able to replace it. That is when the sores will come. On his bottom, his throat, and his mouth--this is unavoidable after transplant--so please pray that it is minimal. IF the sores in his throat get bad, they may have to intubate him and place him on a breathing machine or ventilator. If this is necessary, he will be moved to the PICU and will be unconcious for 4-5 days. He may get a rash, fevers, and nausea. All of these things are to be expected and will all be temporary. They will usually subside within the first two weeks. During this time, Dylan will not be able to have visitors because of his non-existent immune system. This is now the time for his body to start healing itself from the inside. Please pray that the cells engraft quickly and that his body does not reject the new cells and the new cells do not reject his body. They say that children, particulary babies, are very resilient and that he should recover quickly-and that is what we are praying for!! The battle is not over yet, and in a way, we have just begun. Today is day 0-and tomorrow will be day 1 post transplant. We cannot wait to get into the higher number of days!! Thank you everyone for being diligent in praying for our precious boy!!

In His hands every second of every day,

Michelle, Erik, and Baby Dylan

Inspiring Healing Video

2009-09-11T11:02:00.003-07:00

We were emailed this video today and it was a very big encouragement as we prepare for Dylan's transplant. Check it out... http://www.tangle.com/view_video?viewkey=a5e697fe65e6e7bffa75

Copy and paste the link into your browser.

Transplant Day: Start of a New Life

2009-09-11T09:42:00.004-07:00

Today is the day we have been waiting for…. TRANSPLANT DAY. All of the past few months of events have led us to this important date…. September 11th. In 2001, it was a tragic day that will forever be remembered in the minds of all Americans. Eight years later, we will be able to share this historic date with many.... But it will be the Start of a New Life for Dylan.

Even though it can be difficult to understand why Dylan is sick and even harder to watch him endure extreme pain and suffering, we know that God has a plan in all of this. A ‘perfect cord blood match’ has been found and we are praying that God will give our only son new life through this transplant. The months of chemo and the intense sessions of radiation have killed the leukemia and his body is now ready to receive the new blood. Dylan’s body can fight and try to reject the blood match but we know that God is the great creator of life, the sustainer, and the perfect healer... He is the one who makes that decision. As Abraham trusted and obeyed God, we trust Him and lay our precious son Dylan on the altar. We say, "God, Dylan is your child. We know you love him more than we ever can. We are thankful that you chose us to be his parents. We love you and trust you. We pray that you will use this blood to breathe new life into Dylan.”

Dylan’s battle with leukemia is a clear picture of our need for a ‘perfect blood match.’ Like Dylan, we all are born with a disease and it’s called sin. We are all on the path to eternal death and separation from God. However, there is a ‘perfect blood match’ and it will heal you completely and give you life; without it, you will die. It is only found in God’s only son, Jesus, who spilt his perfect blood and died on the cross for your sins. Through Him, we can have life and live it abundantly. When trials come in life, you can cling to God’s truth, and He will sustain you and lead you. This is the only way to have peace in life.

Thank you for your prayers and we look forward to what God is going to do!

Night Before Transplant Day

2009-09-10T23:38:00.004-07:00

Transplant Time is set for 1130am Arizona Time. It will take approximately 1 hour.
Michelle is busy taking care of Dylan tonight. Dylan has done well with minimal side effects from the many drugs he is receiving. We are very thankful about that. However, he is overly tired and screams whenever he is layed down; he is only comforted when he is held and cuddled. This is a major challenge for Michelle to get sleep. So you get to deal with me (Erik) this time. After thinking through the past many weeks, God has reminded me how he has sustained us in every situation. This process and trial is challenging us in every way imaginable…. It has challenged our personal relationship with God, our marriage, our relationships with our family and friends, our jobs, and much more; It is easy to look up at our huge mountain of challenges and say, ‘I give up.’ Being cooped up in a hospital cubicle room for months can drive a person crazy; being separated as young married couple and sleeping in separate beds for the entire process is very difficult and can feel like each spouse is living like a single parent; being responsible to sell Real Estate, in today’s down market, that is required to pay the monthly bills and provide for the family can be overwhelming; being away from the church body, family, and friends, creates a thirst for reconnection; unable to go on a relaxing summer vacation (when everyone else does) can bring jealous thoughts; trying to care for a sick infant who has greater needs than we can meet is exhausting………. But all of this…… to bring us to a place where all we can do is cry out to the only one who can meet all of our needs and who will lead us up and over this mountain; to remove all dependence upon our own power, thinking, and desires and place it completely on God; to put us in a position where we lay all of our sin, our fears, our needs, our finances, our challenges, and our precious Dylan on the altar and say, “God, all we have is yours. Dylan is yours. You are the Great Healer. We know you will provide. We love you and trust him to you.”