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!
Hello everyone! Dylan has now been in remission for 6 months and is LEUKEMIA FREE!! We are not out of the woods yet, as they will not consider him cured until 12 months of being in remission, but we are out of the danger zone. This past Thursday was an emotional day to say the least. This may be a little long, but I want to give you a glimpse into our crazy day. Here it goes-- As I drove down to Tucson late Wednesday night with my mom, we talked through some of our fears and thoughts about the upcoming events. Is the cancer gone? Has he relapsed? What would the bone marrow test tell us? It was one of the hardest nights of sleep I have had in a long time. I had to pray and give the Lord all of my fears, and all of my hopes....however, I knew that whatever the outcome of the following day...that the Lord would still be there. Dylan and his little girlfriend, Abby, were both getting the same procedures done that day, and going through the same process; a bone marrow aspiration and a spinal tap to check for Leukemia. Dylan's last meal was at 2am. We thought that we would be going in for D's procedure at 7:30am and we did not end up getting called down until 12:30pm......and that was a long and dreadful morning with Dylan not being able to eat. He got his first taste of apple juice that morning because he could have clear liquids until 9:30--and he really enjoyed it! But soon, he wanted the real stuff. We tried every little thing to make him smile. The child life specialist pulled out every toy she had, every noise maker, and light-up gadget. Bubbles helped for about 5 minutes and a blown up surgical glove even kept him entertained. He was definitely a trooper! Finally, they came to get him for his spinal tap and bone marrow aspiration...that is when the nerves set in. More waiting. Oh, how I love the waiting! The procedure went well and we headed back up to clinic to wait for the results. MORE WAITING! Dylan had a hard time coming out of the anesthesia and was quite hungry and tired...so we just cuddled him as much as possible. Then Dr Graham lets us know that he is going down to check the results of the tests.......AND more waiting!! 30 minutes later he walks into the room, and he is not showing any emotion. The spinal fluid was clear and no cancer cells were present. He then explains to us that the samples from the bone marrow show tiny new cells that looked like new growth, but COULD be leukemia cells. I tried as hard as I could not to freak out. I wanted to cry, I wanted to scream, but I stayed quiet. He said that the pathologist thought they were Leukemia cells and that a senior pathologist would look at the sample within the next couple of hours and that he would call us to let us know what they thought. MORE WAITING. We were just about to leave to go back to our hotel, when the nurse walked in and said that Dr. Graham was on the phone and wanted to talk to me. I told her that I did not want to talk to him-half joking, but mostly in fear of what he COULD tell me. I was shaking when I picked up the phone, knowing that our life could be turned upside down once again. He proceeded to tell me that the senior pathologist looked at the sample and had no question about the origin of the cells--THEY WERE HEALTHY NEW CELLS..........I felt like I could not breathe! I could not even talk because I was crying so much! Praise GOD!!! I hung up the phone and cried out of pure joy hugging my mom and Dylan. We left the hospital rejoicing with our wonderful news and talked about all of the miracles that God has done in Dylan's life. Later that night, Jennifer, Abby's mom, got a call too. Her news was not good. Abby's leukemia was back. She called me that night crying and I cried with her. It was heartbreaking. It was a day of rejoicing and exciting news with Dylan, but a night of sadness knowing that my dear friend and her precious daughter were entering a world of the unknown. Stupid cancer. I hate cancer. It was hard not to feel guilty about Dylan being healthy. And not really guilty, but sad to be excited when they were hurting. I think I hugged Dylan harder and longer than I ever had that night. I cried as I prayed, thanking God for healing our baby, and begging for Him to heal Abby and to carry the family through this next stage in their journey. Please pray for Abby and her family. Jennifer and her husband John are stressed, afraid of the unknown, and they are weary. Please pray that the Lord gives them the strength to get through each day and that they feel His presence and His loving arms around them. Thank you so much for your diligent prayers for Dylan. Words cannot express how thankful we are for your support. Please continue to pray that his body heals completely. We had his last line taken out on Friday and he is now a 'normal' little boy. He is still on steroids and another med to help his tummy, but we are hoping to decrease these throughout the month. Pray for us to be confident and trust the Lord with Dylan in every little detail. The fear of the Leukemia coming back is always lingering. A fear that is NOT from God. We are now going to Tucson for check ups only once a month! YAY! Isn't that exciting? I am glad that we can still get to visit with our Tucson friends and for Dylan and Abby to see other. Abby loves Dylan. She always tries to grab his chubby cheeks and always wants to kiss him! But Dr. G always says, "no licking, no touching, no kissing!" HA! I love the way babies react to one another! In other news--I am going to be sending out an E-VITE for Dylan's party and also will post all of the info on the blog. If you would like an E-VITE, please email me so I have your email address and I will be sure to get one to you! :) Send emails to email@example.com. As a reminder, the party will be on Sunday, April 18th from 1:30-4:30, open house style--so you are welcome to stop by or stay as long as you want! We would love to see all of the people who have supported us and Dylan would love to see you too!! I am hoping to keep him awake the whole time! HA! Thank you again for EVERYTHING! You guys are AMAZING!
Loving life and cherishing every moment, The Praskins
Baby D had a bone marrow test today in Tucson before he gets his broviac out tomorrow. The original result was that the pathologist was not clear if some of the cells were 'new healthy cells' or the beginning of leaukemia cells. After a long stressful wait, a senior pathologist reviewed the results and confirmed that the cells were 'healthy baby cells.' Yeah! What a relief! We are so excited and thankful to God that Dylan is continuing his great progress! Thank you for your prayers. Your support and encouragement has been so uplifting. We are looking forward to Dylan's broviac being removed tomorrow so he won't yank it out! We will update more as we hear! Love Erik, Michelle, & Baby D
Hello Everyone!! Sorry that I have not updated in a while.....but as I always say....no news is GREAT news! Things have been abnormally normal around here....sounds kind of strange....but we are pretty much starting from scratch of what normal should be. It's nice. It's a great thing not being in the hospital. It's a great being in our home. Sleeping in the same house all together. Cleaning. Grocery Shopping. Laundry. Normal....I LOVE IT!!
But as we are back to normal, many of our friends in the BMT world are not. As you all know, we have made a lot of friends along our journey, and some of them are having happy endings, some have had bad, and some....are still struggling to make it. I would love for you guys all to pray for Bekah....she is 5. She has a different diagnosis than Dylan, but underwent a BMT about a month after Dylan. She and her family have had a tough weekend to say the least. There were many times where she could have lost her life this weekend, but God has really protected her. She is now on life support in the PICU, and is fighting for her life. I have gotten to know her mom, Sharla, pretty well, and she is an AMAZING warrior for her daughter. PLEASE pray for this family. They are frightened by what COULD happen, but also have FAITH in the Lord and believe that He can bring Bekah to full recovery. Please pray along with us for this sweet girl. Here is her caringbridge site if you would like to follow along with us:
Ok, so it's kind of hard to transition out of that, but I am going to try. I was texting back and forth with Bekah's mom this weekend, and while they are going through this devastatingly emotional time, she asked about D, and how he was doing. She is always so excited to see him doing so well, even when her world is falling apart. That is just the kind of person she is.....amazing!
Soooooooo.......Mr. Dylan is doing better than I could have ever hoped. He is perfect. And I know that every parent thinks that their kids are amazing.....but seriously, I don't know if my heart can take any more love for this child. Every morning, (as long as it is after 6am), I get soooooo excited to walk in his room to see that huge smile of his. I usually stand by the door for a minute or two and just watch him. Then, the second I say "Dylan", he starts bouncing around and looking every which way to find me........melts my heart every time!! God is so good. I am reminded of the miracle that God has given us every time I look at him. You guys must think I am crazy, and that I must cry all the time....and I DO....not ashamed of it. It's all still a little hard to believe sometimes. When I look back at the horrible pictures of that day, it brings back that sinking feeling in my gut....and in a way, I don't ever want that feeling to go away. I do not want to go back to the person that I used to be. I don't want to take life for granted. Take my loved ones for granted. Dylan is my reminder, and always will be. I do believe that God sometimes gives us trials in our lives to test our faith, and to show us that we are nothing without Him. He needed to break down Erik and I to show us what life was really about. We are thankful for this trial. And even as I type this, I am fearful to say that knowing that I still have no control of the future....but I can, with confidence, say that I know that I can get through anything with Christ by my side.
THE PLAN: The next step going forward is to take out his line and do another bone marrow biopsy. These procedures are scheduled for March 11th and 12th. My mom (THANKS MOM!)is going to join us for the trek down to Tucson and we will stay 2 nights. On Thursday morning, they will do a bone marrow biopsy to double/triple/quadruple check that there are NO signs of the Leukemia cells coming back. Although the doctors believe that there will be NO cancer, they just want to make sure before taking out the line. PLEASE PLEASE PLEASE pray with us, that there are no signs, whatsoever, of any bad cells, and that the biopsy shows perfectly healthy, grafted cells. As long as all goes well on Thursday, and it will :) , Dylan will be put under anesthesia once again (and hopefully the last time), and they will go in and remove his last broviac line...........I cannot even begin to express my excitement for this!! It makes me giddy!! No longer will I have that reminder of the cancer that once permeated his poor little body.....one less thing to worry about!! YAY!! YAY! YAY!! Did I say YAY?! As with any procedures or any time he is put under anesthesia, complications can and do sometimes arise. Please pray that there are NO complications, and that everything goes as smoothly as possible. Please also pray that Dylan does not have any side effects from the anesthesia....he has been put under so many times, I have lost count. That is so sad. It makes my heart heavy. He is not usually a happy camper once he wakes up, and that is to be expected, but please pray that he does not throw up and that he can recover quickly from the procedures. After all is said and done, we should be down to one.....yes, one, visit a MONTH!! WOW!! I have been waiting for this day for a long time! I CANNOT WAIT!!! :)
Thank you to all of you who have continued to walk with us on this journey that we call our life.......your faithfulness, your support, and your prayers have been such an encouragement to us!! You are amazing!! We went to an awards ceremony last week for the "Light the Night" walk that we attended back in November. Our group, Dylan's Dream Team, won the "Most Feet" award! We had 137 walkers!! WOW!! Thank you to all of you who were able to come and support us that night!! I cannot wait until next year when Dylan will be walking with us!! Won't that be amazing? Mark your calendars for November 6th....we are hoping to have as many friends and family join us as possible to support this great cause! (SIDE NOTE: The pic of D with the Diamondbacks Mascot Baxter was from the awards ceremony, and although most kids would cry when they saw Baxter, Dylan was completely opposite! He was loving the huge furry creature and was caressing his face! It was hilarious!! Enjoy the pics!! )
Dylan is in remission and we are so thankful! He is one of the happiest little boys you will ever meet. Dylan does have glaucoma (side effect) and the yearly continued out-of-pocket medical costs are over $5,000. Should you wish to make a donation towards Dylan's continued expenses, we would really appreciate it. Thank you so much!
Baby Dylan Praskins was born on 4/16/09 to Erik and Michelle Praskins, who live in Surprise, AZ. On 6/13/09 at 8 weeks old, Dylan was diagnosed with infant leukemia. ALL (Acute Lymphocytic Leukemia) is a very aggressive cancer of the blood. Infants under 90 days old are considered very high risk. He was placed on an aggressive chemo therapy treatment, which also included a bone marrow transplant (cord blood) performed on September 11th, 2009. Whether God uses modern medicine or a miracle, we believe in the power of prayer. We believe that God has healed our son.