Friday, July 31, 2009

Back to our "home away from home"

Hello everyone!! We are back in the hospital. The plan was to go to the doctors office on Friday and maybe check in to the hospital on Saturday, but God had a different plan. Last night(Thursday), Dylan was had a fever of 101.8 and after talking to Doc we decided to go to St. Joes ER just in case. We are glad we did. His fever went away with Tylenol and then came back at 102.4 a few hours later. They did the regular cultures and a few other tests. We got to hang out in the ER from 10pm-4am--it was so much fun!! :) Then at 4am they decided to admit us, just in case his fever came back. It was great to see friendly familiar faces ready to help us at 4 in the morning! Erik and I were completely exhausted to say the least. I think I slept a total of an hour that whole night. Thankfully we were able to get our same room as before, which is a huge blessing!! Dylan had another fever this morning over 102 and had to get his spa clothing back on--his cold wash cloths--but as with last time, he did not mind it so much as long as I was holding him. He is such a trooper!! At about 10am I felt like I was going to die from exhaustion, and my wonderful sister-in-law, Karyna, came to our rescue!! She came and hung out with Dylan the whole afternoon so that Erik and I could go home to get some rest and pack up our stuff. THANK YOU KARYNA!! I probably could have slept for 12 hours, but the 2hours I did get to sleep were awesome!!
THE NEW GAME PLAN: The new plan is to start Dylan's chemo on Monday and stay at the hospital until he is healthy again from the treatment. In the past this process has taken about two weeks, so that is what we are planning for. We talked to the transplant coordinator and the BMT Doc wants us to start the process after we are done with this last dose of chemo!!!! This is a HUGE praise and answer to prayer. We have been praying that Dylan does not have to go through another month of chemo and we are so thankful that this will be his last dose before transplant. We are going to get more specifics over the next couple of weeks, but we will probably get a week or two of time at home and then we will be off to Tucson for the bone marrow transplant. This would put us in Tucson at the beginning of September. We are starting to get a little nervous about the whole process, so please pray for peace for us and that God helps me specifically to not dwell on it all of the time. As we have said before, there are a lot of complications and/or side effects that can happen and knowing the things that our little boy is going to go through is not easy. We are trusting that God will get him through the process safely, but we know that some of the side effects are inevitable. Nobody wants to watch thier child be in pain, and this is going to be a hard reality to face. Please start to pray now that Dylan does not get a lot of the horrible side effects and that God keeps his body strong!! We are excited to get the process started and to see God work!
Thank you for praying!!

Wednesday, July 29, 2009

Blessings from Above

WOW!! Has it already been 3 days since we came home from the hospital?! Time is flying by so fast and we are enjoying every moment!! It was really strange when we were leaving the hospital on Sunday evening. It felt like I was bringing him home for the first time--just this time with a lot of different unknowns. I have been playing nurse mommy and I love it!! I have to flush his broviac, give him his meds with syringes through his feeding tube, and set up the pump for his feeds at night!! I am nurse mommy and proud to do it!! It has been AWESOME, to say the least, to have him home. It almost seems normal again, like it never happened, and it was all a bad dream. I wish it was :( But as long as God has us at this point in our lives, we will make the best of it and be thankful for each and every little thing. Dylan is also enjoying his time at home. He loves all of his toys and all of the new stuff to stare at--ceiling fans are the new favorite!! He has taken the time to relax and chill and fall asleep in mommy or daddy's arms at every possible chance!! He also thought he was done with the hospital stuff and decided to pull out his feeding tube!! Yup, 6 weeks in the hospital and no problems--one day at home and he yanks it out!! He is a little stinker!! Good thing Grandma Praskins was not too far away and came to the rescue :) So far, he has kept the new one in, we will see!! We went to the Oncology Doctor's office today (in MESA!!) for an appointment to check his blood levels and to schedule the chemo for Thursday. Well, his Red Blood levels were good and his White Blood Count was at 12.1!! That is the highest it has been in a long time. The bad thing is that his platelets were low and need to go up before chemo. TRANSLATION= NO chemo tomorrow!! TRANSLATION= we get to keep Dylan at home for a few more days!! YAY!!! God is soooooooo good!! We have to go to another doctors appointment on Friday morning, and then we will go from there. Most likely we will be admitted back into St.Joe's on Saturday. We are beyond thankful for the precious days that we are able to spend with our pumpkin!! It is great being home in our own environment and especially our own beds!! Thank you to everyone for your prayers!!! Please continue to pray that Dylan's levels go up. Also, we will hopefully know more info about when we will be going for transplant on Friday. Please pray that the bone marrow doc will allow Dylan to go for transplant without too much more chemo. We trust that the doctors know what is best and will do what they think is best for Dylan--please pray that God gives them wisdom!! Well, I am going to get back to hanging out with my little guy!! Hope you enjoy the pics! Love Michelle
video

Sunday, July 26, 2009

Dylan is HOME for 3 days!!


Hello everyone!! Today has been such an awesome day!! Today we got to take home our precious Dylan--its only for a few days--but we are home as a family! I cannot wait for the day that we are no longer living in the hospital and get to resume "normal" life. We are so thankful for this short homecoming to relax together and enjoy being in our home. We are now all relaxing on the couch, and Dylan and daddy are in their usual spot and ASLEEP!! That is their favorite passtime! I could watch them both sleep all night--I am cherishing every moment. We are looking forward to the next 3 days and are so very thankful that Dylan is healthy enough to be home. Thank you everyone for your prayers and constant encouragement. I cannot believe that we have been in the hospital for over 6 weeks!! As I think back to the first day, I can't believe how far we have come. That first week was so hard, and although the situation has not gotten any better, we have been engolfed in prayer and encouragement and have had God's arms around us the whole time.

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."
Isaiah 41:10

We are so blessed to be surrounded by such an amazing support group! Thank you to all of our family, friends new and old, nurses and doctors--thank you for your encouragement and support!! We love you all! Well, I am going to go and cuddle with my boys and soak up all of the home time I can get!

Friday, July 24, 2009

Happy Days





Happy Days are here again!! The past couple of days have been SOOOOOOO much fun and are a much needed blessing from the Lord!! Dylan has been in a wonderful mood and as happy and playful as ever!! I even put clothes on him for the first time in a long time!! He looks like a "real" boy, not just a hospital patient. The clothes help me feel like we are a little more "normal" so we will continue with clothing the little man--so cute!! Its a little harder to maneuver around the cords but I think it is worth the extra hassle :) He is getting stronger everyday, and is kicking a lot more now. I cannot even begin to express the joy in my heart when he smiles at me. It is the most precious gift from God, and he has been a SMILE MACHINE!! Even at 4am! Yes, 4am is his new wake up time! Lucky me :) But I will take it when I can get it. This morning he was wide awake and flirting with the nurse and flashing his baby blues at me with his contagious smile--what can you do? At least he gave me another hour or two after his little play time.
There is nothing new to report for now. His blood cultures came back negative. There was bacteria growing on the first culture, but the two after that came back as negative so we are in the clear. Prayers answered!! He was supposed to get some more chemo today but they are going to hold off until Tuesday because the last dose took so long to clear his body. It looks like we have a forecast of happy Dylan all weekend!! So excited! As of right now we have a few decisions that we need to make in the near future that I would rather not give specifics on, but please pray that God gives us wisdom on which decisions to make (don't worry, God knows the specifics!) Thank you again to everyone for your love an support and hopefully I will catch some good pics this weekend! The little guy is too smart already--he will be smiling away and having a grand time, until you get the camera out and then he stops looking at us and stares into the camera with a blank stare! I try to fool him with my phone but he knows better! I will have to get sneaky :) Have a wonderful weekend!
Love Michelle

Thursday, July 23, 2009

Calling all prayer warriors!!!

Through this journey we have had the pleasure of meeting a lot of new friends! One of the families is Aaron & Mandy Higginbothem. Their daughter, Zoe Amanda, was born March 26, 2009 with a nueroblastoma cancer tumor on her adrenal gland. She is just a couple weeks older than Dylan. Zoe has been going through multiple chemo sessions and just had a scan done on the tumor to see how it was responding. The following in an excerpt from Zoe's website:


"The scan came back and it was hard news. Before I share I am concerned that I wont do it justice and could easily fall into hopelessness or stretching of the facts to give some sort of false hope. So, I will just write what we know and leave the interpretation vague. Dr. Cohen informed us that the tumor did not change whatsoever. It has not spread but has also not decreased in size or in the number of tumors. I asked what does that mean and he said that he is afraid that the tumor has not and will not respond to chemo therapy. Both surgery and radiation have been ruled out and that leaves us with the hope that the cancer will just go away on its own. He also said that he does not know exactly if that is true or what the next step is. It should have responded and the round of chemo that she went through was the best drug out there. So, he will spend the next couple of weeks consulting with specialists around the country asking for advice as to what to do next. He feels that we will have to "wait and see." He said that this puts us into an even more rare form of neuroblastome that doesn't respond to chemo. The hope that he has now is that it will go away on its own. Neuroblastome is the only known cancer to have a shot at that. So right now it seems that all treatment is off the table for now. So, NOW WE NEED PRAYER FOR HEALING MORE THAN EVER! Even though it has always been in God's hands, it is more apparent than ever now. We are not sure of the next step. So pray for wisdom for Dr. Cohen, Miracoulus healing for Zoe, Strength for us, And his grace to go another day and then another. We are tired, we are hurting, and we are weak, we don't understand, we are angry, we are scared, and we are holding onto Jesus! Pray that he helps us hold on."

PLEASE PLEASE PLEASE pray for this amazing family!! Erik and I had the pleasure of meeting precious Zoe at a diamondbacks game and she is absolutely adorable and full of energy!! But like Dylan, her body is very sick on the inside and we need our Heavenly Father to HEAL her precious body!! WE SERVE AN AMAZING AND ALL-POWERFUL GOD, AND HE HAS THE POWER TO HEAL LITTLE ZOE!! Thank you in advance for all of your prayers! If you want to follow along with Zoe's journey, here is the link: www.caringbridge.org/visit/zoeamanda

Praying for miracles for our babies,
Michelle

Wednesday, July 22, 2009

....still trucking along

Hello everyone! We have been fever free since Monday at 4pm!! YAY!! We are still waiting for results from the blood cultures to see if anything grows-and to find out what exactly was growing in the first culture that they took. Tuesday was a day of rest for little Dylan. He slept most of the day and was able to get into a really deep sleep--almost too deep!! His heart rate dipped as low as 85, which never happens, and he was scaring me and the nurses! The Doc ordered an EKG to check things out and everything came out NORMAL. He was just REALLY tired :) We are so thankful that the Lord has protected his little heart and is keeping it strong through this whole process. Dylan has taken a while to recover from the chemo treatment on Friday, so they may have to postpone the next cycle which is supposed to start tomorrow. His levels are going down as expected. He will probably hit 0 white blood cells soon and has already gotten a red blood transfusion and will get platelets today--all of this is to be expected. We have to continue to be very careful with visitors and anyone who comes in contact with Dylan. His body is in a very delicate state again and we do not want him contracting anything from anyone. Please pray that Erik and I (along with other family members) are able to stay healthy so that we can be with Dylan. I cannot imagine not being able to be there with my baby!! Dylan has not been eating too well the past few days due to the chemo and seems to throw up anything that we feed him by mouth. So far today he has had an ounce of formula mixed with rice cereal and has kept it down. Please pray he can continue to eat and gain weight. He weighed in last night at a whopping 10lbs 14oz!! Go Dylan go!! Some of the weight is "fake" because he has been pumped with so many fluids to clear out the chemo, but we will take it!

WE RECEIVED OUR DYLAN BRACELETS, SO PLEASE LET US KNOW IF YOU WANT ONE!

That is all the updates for now!! Thank you for all of your prayers and support!! We love you all!!


In His Hands,
Michelle

Monday, July 20, 2009

A Day of Fevers....but still looking cute!!




video


Dylan has had a rough day today. It started with a high fever and throwing up last night and continued throughout the day. He has had a total of 4 fevers since last night and has thown up 3 times. The poor little guy has not eaten all day and has been sleeping most of the day on mommy. The trick was to keep him off of me and only on the boppy so I did not make his fever worse. I could not stop taking pics of him in his cute little towels. With each fever came cold wash cloths and surprisingly he did not seem to mind too much. As long as mommy is holding him, he will deal with anything!! There are still not any updates regarding the culture results but we will let you know when we hear anything. Please continue praying that whatever is making his body angry goes away with the antibiotics and that he can keep some of his food down tonight. Thank you all for your prayers!!

High Fever and Infection

Dylan had a 103.7 degree temperature this morning. Michelle has been holding Dylan in wet towels and washcloths. The cultures have come back and there is an infection growing. The lab is still determining the type of infection so the doctors can put Dylan on a more specific anti-biotic. Please pray that God will give the doctors and nurses wisdom and that the infection will be removed from Dylan's body ASAP!

Sunday, July 19, 2009

.....and it begins

Tonight was the start of many nights with fevers. Tonight's fever came in at a whopping 103 degrees--his highest yet. They took a urine sample and also another blood culture. Please continue to pray that he does not get any infections and pray for Erik and I to not freak out whenever he gets the fevers. This whole up and down roller coaster is not so fun! Please pray that God continues to give us a peace that passes all understanding. On a good note, we got some great news back on his bone marrow sample that they took!! It came back showing that he is in remission!! (remember that it is only called remission, but there is still an undectable amount of leukemia in the marrow) This is great news and shows that his body is responding well to the chemo and it is killing the cells that it needs to. We are praying that the doctors will decide that this will be his last round of chemo. It will depend on how his body responds to this round and what the transplant doctor thinks we should do. We would love to start the transplant as soon as possible and we are praying that we get our little boy and family home for Christmas!! That would be the most wonderful Christmas present of all time!! (and birthday present for me because my birthday is on Christmas!) Thank you for all of your prayers!

Love Michelle

Saturday, July 18, 2009

RISE 'N' SHINE



video

Good morning everyone!

Friday, July 17, 2009

Good Morning




Today was another great day!! Dylan started his day quite early--at 1am to be exact!! He was up flirting with Dymphna, his nurse, and was smiling away!! He is such a little flirt! He then lasted until 4am and decided to get mommy up too!! It was ok, I love just playing with him when he is so happy--there are sure to be too many not so happy days ahead :( Dylan kept our nurse Chrysta entertained today by smiling and cooing at her!! He loves Chrysta!! We are sooooooooooo blessed with awesome nurses! We love them all! He also had a big day of chemo, occupational therapy (OT), and physical therapy (PT). He is handling the chemo well so far and no side effects yet--but its still a little early to tell. Thank you again for the diligent prayers--we are definitely feeling God's hand in every situation.

We had a great evening with some yummy food from a family from church, and then had a lot of family visitors. We were able to enjoy their company and Dylan got passed around to everyone--he loved it! His cousin Kelsey even fell asleep with him while holding him!! So cute!! Thats all for now! Have a great night everyone!!

Love Michelle

Thursday, July 16, 2009

Chemo--Round 2




Hello everyone!! Today was the beginning of round 2 of chemo!! Yay!! I know it may sound strange to be excited about the chemo, but the sooner we get this done, the sooner we move onto getting better!! So YAY for that!! He did well this afternoon considering he had not eaten since 7am!! We wheeled him down to the OR at about 1pm and then he went into the spinal tap procedure around 2pm--I just tried to keep him asleep so he would not realize how hungry he was. They did another spinal tap along with a bone marrow aspiration which will tell them if he has any leukemia cells in his bone marrow. We will get the results on Monday and are hoping that it shows that they are all gone! When Dylan was done, Daddy was there to hold him and we just chilled together all afternoon. He has woken up to eat a couple of times, but other than that, he has been sleeping all day. He tends to sleep a lot on chemo days and especially after getting anesthesia. He is so cute when he sleeps!! :) Ok, ok, he is cute ALL of the time!! I'm sort of in love with the little guy!! We had a few visitors this afternoon along with some yummy dinner! We are soooooooo thankful for everyone bringing down dinners. If you would like to sign up for a dinner, you can go to foodtidings.com and just look us up! Thank you for the past 30 meals we have already had! There are some pretty amazing cooks out there!! And don't worry, if you are like me and are not the best cook, or you just do not have any time, there are always restaraunts! Well, I think that is all for now. Dylan will be on Chemo for the next 20 hours continuously so please pray that his little body--specifically his kidneys--can handle all of the toxins. Thank you for praying for our precious boy!!

In His Grip,
Michelle

Bone Marrow Transplant with Cord Blood Match

Here we go.....this is a lot to take in, and an even harder reality to face. Before I start with all of the information, we want to reiterate that we know Who is in control. We believe with all of our hearts that God is going to get Dylan through this sickness and that He will heal him. We know that percentages of survival and statistics do not have God figured into them. With that said, we will give you a condensed version of what the bone marrow doctor, Dr Graham, went over with us.
First things first, Dylan has to be in remission before we will be able to start the bone marrow transplant (BMT). When we say remission, he will have to have an undetectable amount of cancer cells in his blood. This will not mean that he is healed. Usually a leukemia patient can have "cancer free" blood after only a few treatments of chemo. Eventually, within a few months the cancer returns. The doctors feel that Dylan will need at least two more rounds of chemo in order to put him into remission, so three total. He will be starting his second round today.
Dr. Graham thinks that we will be starting the process for the BMT in September. Dylan has to go down to Tucson sometime in the next month to undergo some testing to make sure that his little body can endure the BMT. Once we are ready for the BMT, we will move to Tucson for the procedure. The estimated time for the whole process is about 90 days--YES--3 months! We are trying not to dwell on that right now, only to keep today as the focus. Please pray for me as I will be the one who will be living there most of the time with Erik coming down on weekends and family coming when they can. I am a huge planner, and this is not something that I am excited to plan for. But we will do ANYTHING for our precious Dylan and we are confident that Dylan should be taken care of by the specialists in Tucson. We are thankful that it is only a few hours away from family and friends and not states away.
THE PROCESS: Once Dylan is there, the first treatment that he will receive is a really high does of chemo drugs. This treatment with kill all of his bone marrow. Then they will go in and inject the healthy bone marrow, which will then take over and "set up shop". We are so thankful that he has 2 perfect matches!! They are cord blood matches and contain the stem cells that he needs in order for this to be successful. We are thankful to the family who donated the cord blood to the cord bank at the time of their child's birth--without this, Dylan may not have been able to survive. God works through all things!! It is an answer to prayer and leaves Dylan with a much better chance of survival. After the transfer is done, Dylan will be closely monitored. There are many horrible side effects that may happen, but those side effects are temporary and will go away eventually. We will give more details as time goes on and as we get closer to the BMT. It is hard to look at Dylan and know that he is going to have to endure this tough road ahead, but we are thankful that God is holding him in His arms every second of every day and will give him the strength. Thank you all for your much needed prayers and support during this time--we appreciate you more than you will ever know!
We Love You!
Love Michelle, Erik and Baby Dylan

Wednesday Update

Wednesday was a great day for Dylan. He woke up in a great mood (at 5am) and was all smiles-and I was happy to be up with him. His white blood cell count went up again to 7.4, and he was even making his own platelets, because those went up as well!! GREAT NEWS!! With great news comes chemo. Because his counts are stable, the docs are starting another round of chemo today. He will be getting another spinal tap scheduled at noon today along with other chemo meds in the afternoon.
Please pray that his body will be able to take the chemo drugs and bounce back better than before. As always, thank you for the countless number of prayers!!

Love Michelle

Tuesday, July 14, 2009

...movin on up!





Hello everyone! Today was a great day for Dylan!! He is sustaining his weight, and his white cell counts are movin on up!! Today he was at 3.5, up from 2.5 yesterday!! This is a great improvement and the docs are hopeful that he will start his next chemo session soon. Dylan has been on a medicine that helps his body create white blood cells since they cannot give him white blood cells. Now that his counts are recovering and increasing, the docs need to see if his body can keep increasing his counts without the medicine. Today was his last day with the meds, so we will see how his body performs. He was in really good spirits today!! Its so much fun to hold him and give him endless hugs and kisses with his huge smile looking at you! He is so precious!! We also had a lot of visitors today, so that was fun!! Tomorrow at 5 we are meeting with the bone marrow transplant doctor. We are excited and also nervous about the meeting. We have a million questions to ask and the unknown can always be scary. We are praying that God really gives us a peace about the transplant and that the meeting goes well. It will be nice to kind of get a "game plan" going and know what we will be doing in the near future. We are soooooo excited and thankful that they already found Dylan at least 2 great matches from chord blood and we can see God working through every little detail. Thank you for your prayers!!
Love, Michelle

I hope you enjoy the pics, I know we do!!

Monday, July 13, 2009

Good Morning


Good morning everyone!! I had a great nights sleep last night! I woke up in a good mood, which made mommy happy, and I was smiling a lot!! I also had some fun laying in my bed and staring at my mobile--its so cool!! Mommy and Daddy are very proud of my blood counts today!! My white blood cell count went from 1.5 yesterday to 2.1 today!! Yay!! Go me!! Thank you for praying for me and please continue to pray that my counts go up and my food stays down :) I love you!!

Sunday, July 12, 2009

....and just a few more :)




...a few of my favorite pics!




THANK YOU!!

We have now called the hospital our home for a whole month!! I want to take a moment and thank EVERYONE who has reached out to us and supported us through this past month at the hospital. I may not have the time to get thank you cards out to all of you, but please know that we are truly grateful!! Thank you to those of you who have sent encouraging cards,emails, and blog comments. Thank you for the generous donations, and the giftcards. Thank you for taking time out of your life to visit with us and share in our ups and downs. Thank you for making delicious meals or ordering us food--that really takes a lot of stress away. Thank you to the hundreds of people who have reached out to us wanting to help out in any way we need!! I am sure we will continue to have needs and we know that we have people we can count on. Thank you to the people who don't even know us for reaching out and helping us in tangible ways. Most of all, thank you for the thousands of prayers that are lifted up to our Heavenly Father every day!! Thank you for the countless prayers pleading for our son to be healed!! We serve an AWESOME God and we are so excited to see how He works!! We are praying for a miracle!! Thank you everyone for all of your support and encouragement. We would not be able to do this without you! We are so blessed with an amazing family, church family, community, and hospital staff--THANK YOU!! We love you all and are so thankful for you!!

Little Steps....

Hello everyone!! We have now gone 36 hours without a fever (a high one at least)!! Praise God!! We also got some GREAT news with Dylan's blood counts today!! His white blood cell count went all the way up to 1.5 (1500)!! This is a huge step because he has been hovering around 0.1-0.05 for the past two weeks!! He still has a long way to go. Please pray that his counts go up so that he can continue his chemo, and eventually get on track to get his bone marrow transplant (more details later this week on the BMT). All in all, he is making great progress!! We are very proud of our little man, he is working so hard!! He has not been the happiest little guy the past couple of days, but who can blame him--he feels icky. I have to remind myself that even perfectly healthy babies get grumpy sometimes (or more than that!). Even through all the grumpiness and feeling yucky, he was able to bless us with his gorgeous smile. Some days all I need is to see that perfect smile of his!! It makes everything better :)
Erik and I were able to go to the Diamondbacks game today with Hopekids. We had a lot of fun and were able to hang out with our new friends Mandy and Aaron. I have to admit that it was a little hard being around all of the different families at the game with all of their kids. Especially the families with small babies. I want so badly to be able to take Dylan out and I know the reality is that it will not happen for a long time. I have to focus on today, and making sure I do whatever I can to get through one day at a time and to be thankful that I have this day with him. I am so blessed to be Dylan's mommy. He is truly a very special little boy and it is my honor to be the one that God chose to take care of him. Both Erik and I know that God chose us as his parents for a reason and we are ready to do whatever it takes to be the best parents possible.
Please pray for Erik and I, that we stay strong through this trial and lean on our Lord for strength and that baby Dylan's body can continue to grow strong against his leukemia cells. Thank you for your prayers! We love you all!

Saturday, July 11, 2009

Car Wash Success!

A BIG THANK YOU to everyone who showed up today in the 115 degree weather!! We had an awesome crew of car washers that ventured into the heat to help support us! Thank you also to those of you who stopped by to get your car washed to show your support! One of the washing highlights was when Erik and the boys washed a Dodge Viper. That was treat and probably the closest Erik will ever get to owning one:) A special thank you to Melisa Carnahan and Arlene Wilhoit for putting together the carwash and getting it organized!! They raised an amazing $1200 today!! Thank you so much!! We appreciate all of the teamwork that it took to make today successful!! We are blessed to have such awesome friends and family!!




Another Saturday...

Today has been full of all sorts of "fun" stuff!! Ok....so not really "fun", but definitely not a boring day. Yesterday, as soon as I left the hospital (he always causes drama when I leave), Dylan got a high grade fever and the cultures were taken and the docs decided to take a CT Scan of his tummy and lower body to see if they could find out what was causing the fevers. The CT Scan was reviewed this morning and the doctors did not see anything that looked out of the ordinary. They thought he may have been getting a fungal infection, but they cannot find any evidence of one. We think Dylan just likes to cause drama :) He had to get both platelets and red blood cells today, along with his usual antibiotics. He seems to feel a lot better with more energy when he gets his red blood--also the nurses say he is getting his "tan". If only I could get a tan that way :) We also moved rooms today. There was an opening in a bigger room with a larger bathroom, better air conditioning and a fridge twice the size of ours!! YAY!! I did not hesitate when they asked. We are now nestled into the new room--Room 36 for those of you who are visiting--and we like it a lot!! Daddy is now cuddling with Dylan and I am just relaxing. Let's pray for an uneventful night. Tomorrow Erik and I are going to the Diamondbacks game with Hopekids. They are an organization that brings families together who are going through cancer and other illnesses with their children. We are excited to meet some other families who are going through or have gone through the same kind of situation. I have already been in touch with one family who's son was diagnosed with MLL (the other kind of leukemia) at 8 weeks old, the same time Dylan was!! He went through chemo and also received a bone marrow transplant. He is now 13 months old!!! PRAISE GOD!! It was so encouraging to hear his story!! I can not wait to meet him and his family! We are so grateful for the wonderful people that God is has put in our path.

Friday, July 10, 2009

CAR WASH SATURDAY JULY 11th - BE THERE

Car Wash hosted by Melisa Carnahan & Arlene Wilhoit
CARWASH FOR BABY DYLANHosted by: Melisa Carnahan and Arlene WilhoitWhen: July 11, 2009 9:00 AM-12:00 PMWhere: Jack in the Box at 51st and Thunderbird5104 W ThunderbirdGlendale, ArizonaPlease come to volunteer or just bring your car by for Baby Dylan's Car Wash! We are raising money for the Praskins' family. Please email Arlene if you are able to volunteer or simply plan to stop by. Thank you!!!cooking4emma@hotmail.com

Thursday, July 9, 2009

Baby Dylan Bracelets

Hey guys! I know a lot of people have been asking about the bracelets. We originally ordered 1000, and WE ARE ALL OUT!! Can you believe it? Praise God that so many people out there are wearing his stylish bracelet to remind them to pray!! My sister was at a gas station in Glendale and the clerk stopped her and asked her what the bracelet stood for! He said that he has seen so many people in the store wearing the orange bracelet, he just had to find out what they were for!! Isn't that AWESOME!! It is very bright and definitely a great conversation starter. The bad news is that we are out of bracelets....the good new is that more are on their way!! They should be here in the next 10 days. If you want a Dylan bracelet, you can pick them up at West Valley Bible Church or Northwest Community Church. If you cannot make it to one of the churches, you can send me a self-addressed stamped envelope to our personal mail box. Please use one stamp for one bracelet and two stamps for two. Only two bracelets per envelope also, so if you need more, just send more envelopes! :) We would love to get a bracelet to anyone who wants one! They are a great reminder to pray and to tell others about the love of God through Dylan's story!

Mail envelopes to:

Erik Praskins
PMB #226
15411 W Waddell Rd Ste 102
Surprise, AZ 85379

I'm 3 Months Old Today!!





1.) 3 Months Old 2.)2 Months Old 3.) 1 Month Old 4.) Newborn

Never a Dull Moment!

Our son....he just loves to create drama :) He had a fever most of last night and this morning, so they took the usual cultures and we will await to see the results--so far, no infections. They took a chest x-ray last night because he was breathing heavily and sounded congested--three different doctors looked at it, one doctor thought it looked like he had a viral infection, but the other two said it looked normal--so the majority wins. Dylan had a consultation with a speech therapist yesterday because his voice is still not back to normal and he is having trouble eating. She ordered for him to have a special x-ray on his throat this morning to see where his problems are coming from. In order to see were his food was going when he drinks, they had him drink a barium mix that would show in the x-ray. From the x-ray they could tell that he was having micro aspirations. Basically this means that some of is food is getting into his lungs when he drinks because his vocal chords are not fully closing. This is a problem that should resolve itself in time and was probably caused from going under anesthesia with a tube down his throat. Until his voice comes back, he is going to be having most of his food through his tube. Any food that he drinks by mouth must be thickened to the consistency of honey to keep it from going into his lungs. We have not tried the new concoction yet, so we will see if he will tolerate it. Sounds yummy doesn't it? He continues to be on antibiotics to kill off any infections. Fevers are expected at this point because of his low white blood cell count, but please continue to pray that infections do not take over his body. He is uncomfortable and does not feel very good (the doctor likened it to us having the flu), so please pray that he can sleep well and be comforted by the tylenol and endless hugs and kisses. Hopefully it will be a drama free night! :)

Wednesday, July 8, 2009

Praise in this Storm

We just received some very encouraging news about an hour ago from the bone marrow doctor’s assistant. She told us that they have found 2 ‘chord blood’ matches for Dylan for bone marrow transplant, etc. Next Wednesday, we are meeting with Dr. Graham, who is the bone marrow specialist from the UA medical center in Tucson. He will give us all the details at that time. Please pray that God will give wisdom, that Dylan’s body will be able to fight off any infection, and that either chemo can be started again soon or that the bone marrow transplant can happen quickly. Also, please pray this week that Dylan's neutraphils will increase so his white blood count can get out of the 'scary low level' and get to more acceptable levels.

Tuesday, July 7, 2009

One day at a time, one hour at a time

Last night was rough, which has made today really rough :) I was up until 4am waiting for Dylan's fever to subside and his transfusion of platelets to be done. During any transfusion, they have to take his vitals every 15 minutes to ensure that he does not have any allergic reactions to the blood. Well, in order for them to get his accurate blood pressure, Dylan has to be calm and still--something that he does not like to do! Hey, even I hated my blood pressure being taken every half hour while I was in labor--I can not imagine how hard it is for him! So to keep him still, I would just hold him and cuddle him and it worked out well--I just can't sleep while doing it! (maybe I will figure out a way sometime) He has blood in is stools last night which could have been from his platelets being low--so they are keeping an eye on that (so much fun to disect the poo!) He has been fever-free since last night and we are awaiting the results of the blood culture. They can usually tell if any bacteria is growing within 48 hours--so please pray that the tests come back NEGATIVE. Every other time he has had a fever, the cultures have come back negative--so we PRAISE GOD for that! The doctors are going to hold off on Dylan's chemo treatments until his white blood cell counts come back up. As of right now, he has barely any bone marrow and his counts are dangerously low. Please pray that his body quickly recovers from the past chemo treatments and creates the cells he needs to fight off infections and grow back healthy bone marrow. He has been a trooper through all of this-through the transfusions, the tubes in his nose, the constant poking and proding, and everything else that they are putting him through. We are thankful that a year from now, he will not remember any of this. We are praying that God takes this poisonous disease away from him and that He completely heals him!! Thank you for your continues prayers and encouragement!!

This video makes nights like last night all worth it!! I love his smiles!!



video

Monday, July 6, 2009

Another Fever; Maybe Infection

Dylan has just spiked a fever. They also have found blood in his stool. The doctors are worried that he may have a spreading virus. They have added two antibiotics to help attack any virus that may be spreading in Dylan. Please pray that his blood cultures will come back negative for any virus, that his temperature will go back to normal, and that there will be no more blood in his stool.

Car Wash hosted by Melisa Carnahan & Arlene Wilhoit


CARWASH FOR BABY DYLAN


Hosted by:

Melisa Carnahan and Arlene Wilhoit


When:

July 11, 2009 9:00 AM-12:00 PM

Where:
Jack in the Box at 51st and Thunderbird
5104 W Thunderbird
Glendale, Arizona



Please come to volunteer or just bring your car by for Baby Dylan's Car Wash!
We are raising money for the Praskins' family. Please email Arlene if you are able to volunteer or simply plan to stop by.
Thank you!!!

cooking4emma@hotmail.com

Sunday, July 5, 2009

visitors

Today I had a lot of visitors! I love visitors! Mommy made a new friend, Katie, who brought me a cool cardinals bear that her parents made for me!! Daddy loves my bear!! Katie said that her whole Best Buy store is praying for me! Almost 100 people! That is so cool. Mommy and Daddy are so happy that there are lots of people praying for me. Today they changed my formula too!! YAY!! I finally got to drink out of a bottle!! The new formula tastes a lot better than the other yucky formula. I had four whole bottles today and I have not thrown up yet! My tummy is feeling good! Please pray that I do not throw up anymore and that I let my mommy get some sleep.

Saturday, July 4, 2009

How It All Started

I have a lot of people asking about how we figured out something was wrong with Dylan and how everything happened, so this is how our journey began......

On Monday, June 8th, Dylan woke up with tiny little scratches on his eyelids on both sides, in almost the same place. Well, Dylan likes to grab his face, and especially his eyes forcefully, so i did not really think anything of it. That day we visited my mom at NCC's vacation bible school and she said that he looked really white. I did not think that he looked too different, so I did not think it was anything to worry about. The next day the scratches seemed to turn into tiny bruise lines and then there were also little bruise lines underneath his eyes. We went to Erik's mom's house and she too said that he looked a little pale. Again, I did not think anything of it, because Erik and I are the whitest people on earth. The bruising continued through the week and spread across his eyelids and underneath his eyes. It looked like he had two little black eyes. I figured that he really did some damage when he grabbed his face and it was just going through the bruising stages. But then on Friday, the bruising was almost symetrical on both sides and he was really grumpy all day and not acting normal. During this whole week he was also throwing up a lot which the pediatrician attributed to acid reflux. I called the pediatrician's office once again and explained the bruising and nobody had ever heard of it before. She told me to watch it overnight to see if it got worse and to call them the next day. That night, Dylan was really fussy and only happy when laying on my chest, so I decided to read a book. The book I started was My Sister's Keeper--yes, God was trying to tell me something. I started reading the first couple of chapters and it explains how they found bruises on their daughter and how her blood counts were high and the diagnosis--Leukemia!! I looked down at my sleeping son and stared at his bruised eyes, and said, "nah, that can not be it, he is so little". So I really did not think too much of it at that time. The next morning his eyes were swollen. We kept an eye on him and called the pediatrician again. She then told us to go to Urgent Care. By the time we got into the Urgent Care it was about 4pm. The doctor there had never seen anything like that, and said it could be an allergic reaction to something, but did not feel comfortable diagnosing him, so he sent us to the ER at John C. Lincoln. Once we were headed there all of the fears and confusion started to set in. Our parents met us down at the hospital and waited with us while they were doing all of the tests. The doctors asked us a lot of questions regarding trauma to Dylan and if he had fallen or been hurt by anyone. They took a blood test, took x-rays and even an MRI. I was convinced that they were going to try to prove that I hurt him. The only thing that I may have done to him was kiss him too much!! Then the news came. The doctor came in and told us that his white blood cell count was in the 400,000's and should be around 15000. She said that his little body was trying to fight off something HUGE and it could be leukemia or a tumor. I thought that our world ended at that point. She told us that he needed to get transported to St. Joe's because they have an oncology department. Oncology--that is the worst word that any parent could ever hear. I rode with him in the ambulence while Erik and the family followed. I could not believe that a baby could have cancer--I had never heard of that before. I remember just crying uncontrollably in the ambulance just praying to God that they missed something somewhere and were completely wrong with his diagnosis. We got to St. Joes and they hooked him up to every machine possible. We were still in a state of shock. Then we waited. It took about 2 hours for the oncologist to come in and tell us about the diagnosis. It was 1am when we got the worst news of our lives. "Dylan has Leukemia", she told us. The reality of it was unbearable and I almost fell to the ground. I remember just saying, "how is that possible, he is so little?" We called the family and all cried together. My mom had just left, and Erik's mom was still there with us and some of my family was still standing outside at the hospital. We all just hugged each other and cried. I never knew I could cry that much. It hurt so bad. Erik and I had no idea what God had planned with this horrible situation, but we prayed. And prayed some more. We cried and then cried some more. I don't think we ever really asked "why?", but more of "how?", he was just so little and it did not seem real.
That night, they started the blood transfusions right away. They said that if an adult had the blood levels that Dylan's were at, then they would be dead. His little body just acclimated itself to deal with it. I am so thankful that God gave us the wisdom to take him to the doctor on Saturday. We wanted to wait until Monday, but God made us go that day. I am thankful that God had me reading the book the night before to start preparing me for what was ahead. We have seen God working through everything from the start and we know that He has a plan. He alone is in control. He has blessed us with awesome nurses to help us through this journey and amazing doctors who are blessed with the knowledge of how this cancer works. Dylan is in His hands.

A Good Day





Today was a good day!! I had a great nights sleep, and a fun sleepover with Auntie Karyna!! I have been sleeping most of the day because my body is recovering from the chemo. I did not poop on Auntie Karyna this time--instead I threw up on all of my blankets and then peed on a few of them too!! I don't like the formula they are giving me--it's yucky, so mommy is working on getting me some more "mommy milk" and maybe changing my formula to something that tastes a little more like food! I even heard my doctor say that he hates the taste of the formula! So why feed it to me? i guess it has a lot of calories in it because they think I am too skinny. Until they switch the formula, I don't want a bottle, just stick it through my tube! I had a lot of fun hanging out with Daddy tonight! I love my Daddy!! He was talking to me and laughing with me--he calls me Mr. Dylan and I like that name. He kept sticking out his tongue at me and I kept copying him--we had a fun time bonding! Thank you everyone for praying for me!!

Love, Baby Dylan

Friday, July 3, 2009

3 weeks

Its hard to believe that we have been living at the hospital for 3 weeks!That is almost one third of little Dylan's life. Next Thursday he will be 3months old!! We are so thankful for these past 3 months!! Although the last month has not been too fun, we have still gotten to spend it with our Dylan. Its amazing how much you can love someone so much in such little time. Erik and I were talking this evening and he said that he never thought that he could ever feel the way he does about Dylan. He had no idea what this whole parenting thing would be like, and he is so in love with the little guy. I have always loved kids and therefore have always wanted kids, but I too never realized the bond that you can have with your child. Thank you Lord for blessing us with Dylan, trial and all. We know that as much as we love him, God loves him even more!!
Ok, enough of that, I can't see my computer through the tears. God has blessed us with some amazing doctors and nurses at St. Joes. Its awesome because the nurses are all fighting over who gets to take care of Dylan--he is VERY popular with the ladies!! The nurses are all becoming my friends and are so helpful and knowledgeable and even give me hugs when I need them! They are such a blessing!! We also have some pretty awesome doctors that are watching over Dylan. There is a team of 5 and they all know their stuff and have been very helpful and understanding through this whole process. We are very thankful for all of them and can't wait to bring Dylan back completely healthy one day to show him who took care of him all of those weeks when he was little. :)

Thank you Lord for the rain!

Tonight was date night! And a much needed one at that. We were able to escape the four walls of the hospital room to get some time away together!! (thank you auntie Karyna!) The best part of tonight was that it was raining!! I love the smell of rain more than anything (only because I am a native of AZ and it NEVER rains), and God knew that it would lift my spirits. Thank you God for the rain!! It is always nice to get away, but it is so hard leaving Dylan. We try to talk about other stuff at dinner, but we always come back to talking about our lil baby. I guess it is not such a bad thing, but people start to look at you funny when you can't stop crying :)
Now back to baby Dylan--He did really well during his intrathecal spinal tap (its not intrafecal like I said before--I was lovingly informed by my friend Jill, that intrafecal has to do with poop!! ha!! So thanks Jill for the correction) Anyways, intrathecal just means that they put chemo drugs into his spinal fluid and that helps kill all of the bad sells in the central nervous system. He did not have any complications with the anesthesia, and was acting like himself shortly after. He slept really well last night--which mommy was very happy about--mostly because his night nurse has a special way of wrapping him (I think I will take her home with me!). Today he had to get yet another blood transfusion. Yesterday it was platelets and plasma, and today it was red blood. The platelets and plasma don't freak me out as much as the red blood. They are a yellowish color, while the red blood is DARK RED, and just really looks creepy flowing down the tubes into his port. But it is helping his body stay alive, so we are thankful for all of the blood. He also threw up again today. Poor kid. He may have been too full with all of the fluids pumping into his body. They stopped his feeds for an hour, and then slowly built them up again. So far tonight, no more throw up. Please pray that he continues to keep his food down because his little body is in desperate need of the calories.

Donate Blood

Check out this link and schedule yourself to donate blood. You can play your part in helping to save lives. Thanks. http://www.azfamily.com/video/localnews-index.html?nvid=377100

Thursday, July 2, 2009

Smiles for Daddy

video

Chemo Time

Dylan had a good night but threw up this AM, so the doctors have decided to give him another 'timeout' from eating so his intestines can rest again. Dylan will be undergoing his weekly spinal tap and some chemo treatment in about 30 minutes. Please pray for him, the doctors and nurses, and that Dylan is able to breathe on his own after the procedure without any complications. They have already postponed the treatment for a couple days due to his delicate situation, so it is very critical that his body can handle the drugs at this time. Thank you.

Eating again....for now

Today's x-ray showed that the ileus has gone down considerably and the doctors decided to resume his feeds. YAY!! He started out with small doses of Pedialyte through his feeding tube and then at 10pm, we started him on the good stuff! He was able to drink 1oz by mouth (which he loved!!). Now he is getting small amounts at a gradual pace through his feeding tube. The goal tonight will be to KEEP IT IN HIS TUMMY--please pray that he does not throw up and that his belly will continue to heal. He has his intrafecal spinal tap scheduled for late afternoon tomorrow along with some other chemo drugs. Pray that his lil body will handle all of the medicines and that he will do well while under anesthesia and that God will guide the doctors hands during the delicate procedure. Dylan is still acting fussy and has not slept well at all today--WE BOTH NEED SLEEP TONIGHT--so we will definetly be praying for that too! Well I am exhausted and am going to try to get this little man to go to bed. Until tomorrow................