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

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

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

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

PLEASE PRAY FOR ABBY

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!

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

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

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!

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'

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!