|J. Scott Coile | profile | all galleries >> People (18 Subgalleries) >> Aiden's Fight >> Weeks 25 to 29||tree view | thumbnails | slideshow|
I am setting up this gallery to share through picture and written updates Aiden's progression as he battles this disease in an effort to keep friends and family updated and in request of prayers for Aiden, his family and the medical staff that are the hands in the healing process. I hope to present both regular picture updates that depict the reality of the battle and written impressions that give specific information for targeted prayers. There is a Lotsahelpinghands.com (linked) page with event calendars but here is the most recent news (NOTE: older updates and pictures are arranged at the bottom in subgalleries by week)...
("Temporary Update" from Scott on 9 January 2013)
Aiden is HOME
After days of ups and downs following the transplant and recovery, Aiden once again showed the great power of God's healing intervention and rebounded in the right direction. I know this was an answer to prayers from around the globe. He has been allowed to return home for the remainder of his recovery. This will be a long period without any visitors from the outside while his immune system continues to strengthen. An update from the family will be coming soon.
("19th Update" FROM JENNIFER & BILLY on 24 December 2012)
It's been four weeks since our last update. This has been the most difficult part of Aiden's journey so far, and it's been a challenge to keep up with weekly posts. We appreciate your constant support, even when we are not good about keeping the site current. Our primary focus is helping Aiden with anything and everything we can as he fights for his life. Just know, he is fighting with such grace. He has more courage and strength than words can express. We apologize for the delay…
Aiden had surgery on Thursday, 12/06 to remove his port and place the Hickman. He did so well, never needing a single dose of pain medicine. The following day he received his first round of high dose chemo. This was triple strength of anything he'd ever been given prior and it was expected to cause extreme nausea and discomfort. Additionally, they started several of his new meds used during and after transplant. They prefer to administer these meds orally, it's safer to avoid using the central line when possible and they have to be given orally before we leave the hospital. Unfortunately, taking any medicine orally has always been difficult for Aiden. Because he must get every drop of these meds, his doctors suggested having an NG tube placed down his nose to his stomach. We knew this was going to be necessary to take the number of daily meds he will have when we go home, but just didn't realize it would happen so soon. It wasn't pleasant having it placed, but he was so brave. The next day he received his second round of high dose chemo, and still no issues with nausea. Sunday was his day of rest, which only meant no chemo or radiation scheduled. On Monday, 12/10 he received his first two rounds of radiation. This was very difficult for us, but he did very well. Radiation comes with its own worries, and sedation twice a day only heightens the risks. This continued for the next three days. Other than needing a late afternoon nap from exhaustion, Aiden appeared unphased from the treatments. He maintained his energy and strength throughout, and his smiles were endless. We count this as a blessing, it could have been much more difficult.
On Thursday, 12/13/12 Aiden received his bone marrow transplant! This was the day we have all been praying and preparing for. Doctors call this day zero, nurses call it his rebirthday….we call it the first day of the rest of his long, healthy and happy life. The procedure itself looks just like a blood transfusion. Over three hours, two small bags of the donors cells were pushed through Aiden's line. Nurses watched closely for any adverse reactions, fortunately none occurred. The doctors said the cell dose from the donor was hearty, which should produce positive results for the grafting process and Aiden's recovery.
Friday was the first day of our 100 day countdown, the most critical time for transplant. He felt great and showed no negative repercussions from all that he endured. However, each new day brought more discomfort. Counts bottomed out over the weekend and mouth sores became more and more prominent. On Tuesday, 12/18 Aiden spiked a fever, higher than any fever he has ever had. Nurses quickly began blood cultures to check for infections and started him on an additional antibiotic. Fevers lasted for several days, thankfully cultures never identified an infection. Thursday Aiden had a rash on his legs, from his knees down. His doctors said high fevers, recovering counts and a rash were indicators that he was grafting and that GVH (Graft vs. Host) was present. By Friday morning Aiden was covered from head to toe with a rash, now much more noticeable than the day before. They started him on steroids, treatment for controlling GVH. Although mild GVH is beneficial for fighting Leukemia, too much can be devastating. So we watch and wait, praying the steroids control its progression. Counts continued to improve over the weekend, mouth sores are not causing as much pain and the rash appears to be under control. Unfortunately morphine, rash and other meds are causing him to itch all over. Steroids have taken over his mood and taken away his smiles. In general, he just doesn't feel good. He spends most of the day sleeping.
Today is Christmas Eve and he's just spiked another fever. Cultures have been drawn, and so we wait. We pray this is something simple and can be resolved easily. We are emotionally drained, physically exhausted and desperate for our sweet boy to feel better.
This Christmas we will spend away from home, in a place we wish we weren't so familiar. We will be apart from Ashlynn, Chase and our families. We are doing everything we can to help him find a smile and make happy memories. This will be a Christmas we will always remember, for multiple reasons. Cancer has covered our Christmas with sadness and tears, but a perfect stranger gave us the gift of hope. May God bless Aiden's donor with good health and happiness for his selfless act of kindness. We will celebrate this Christmas different from our traditions, but because of his donor we will be able to celebrate life with our son.
Wishing you all a Merry Christmas! May all your days be filled with love, laughter, good health and happiness! Thank you for your continued support. We Got This, all of us together!
For now, please keep praying!