Christmas 2009 Pictures

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

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!!

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!!

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

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!!!

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!!

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

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!!

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

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

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!!

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

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?!!

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!!

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!

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

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

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!

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!!

"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!!

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

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

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

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