In honor of our son's fight and my dear friend, Anne, I have changed my profile as an outward expression of where I stand....beside you. I cannot carry the fight for you, but I am forever by your side. I love you!
Here we are 1 year out from our first hospital stay and we're in the hospital again. So we decided to celebrate with fancy take out and music/dancing as usual. Kelptyn continues to bring more joy to our lives than we could imagine. He continues to challenge and surprise us daily. We found out yesterday that Kelptyn's donor count has completely dropped off to 0%. We will be moving forward in our search to find a 2nd donor and give Kelptyn a 3rd bone marrow transplant in the fall. He will be setting some new medical records for Rady's as he continues to teach us all.
In honor of our son's fight and my dear friend, Anne, I have changed my profile as an outward expression of where I stand....beside you. I cannot carry the fight for you, but I am forever by your side. I love you!
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Kelptyn was re-admitted to the hospital this week after he quickly turned a corner starting last Friday night. His rash has returned and he is carrying moderate fluid around his heart, lungs, and belly this time. His EBV results didn't show any concern until yesterday. So Kelptyn had more X-rays, Echo ultrasounds, and a CT scan with dye contrast yesterday. The good news is that they couldn't see any lymph nodes on the scan. The bad news is that our now 18-month-old son is receiving more chemo therapy and immunosuppressants which will probably push the donor lymphocytes out of his body. Bummer. It's a fine line that Kelptyn walks, but man does he walk hard.
Kelptyn's been in really poor shape the last couple days with all this respiratory distress, I'm not gonna sugar coat it. However, he has been outstanding and inspiring as usual. As I was holding him the other day and singing him one of his favorite songs, despite struggling to breathe, he still perked up and did two of the hand motions to the song. He feels like crap, but all he wants to do is play. Gosh, I love this kid and his playful spirit. He has been given so many lemons and continues to make lemonade. We're confident that he will be feeling better in a couple of days after this treatment today. Thanks for sharing this wild ride with us. Thanks to everyone who has been sending extra prayers and well wishes Kelptyn's way. I got a phone call from the hospital today saying that he will not be needing his 3rd round of 4 doses of chemo tomorrow because his EBV levels were negative (below 200). So yeah! I guess we caught it just in time and treated it early. Yippee! So his lymph nodes should be back to their normal size now and we'll continue to monitor for EBV just in case. Hopefully, we won't have to jump that hurdle again, but you never know.
Kelptyn's been loving his time at home. He is so happy and feeling really good. Kelptyn continues to surprise us with his resilience and bright demeanor time and time again. Kelptyn looks really good compared to the shape he was in when he was admitted just a little over two weeks ago. Heck, I haven't seen him feeling this good in about 4 weeks. His skin looks great, his constant vomiting/diar his EBV levels have dropped significantly, and he didn't have any strange reactions to his chemo. So his doctor says we can go home today and come back for clinic visits twice next week. Thanks for all the prayers and good thoughts. :)
I couldn't stop thinking about Kelptyn's donor today. She must be an amazingly, selfless soul. She had to sit through an 8-hour blood draw on Kelptyn's behalf today and she doesn't even know him. Not once, but twice she has come to the aid of our child. We are forever grateful to this stranger for loving our son so much without even knowing him. God bless her and all her family. A simple thank you will never be enough.
The lymphocytes should be flying over late tonight and arriving at the lab early in the morning. If all stays on schedule then Kelptyn will be receiving the lymphocytes sometime in the afternoon for round #1. His doctor wants to hold off on his chemotherapy for the secondary Lymphoma until this Thursday. It's hard to believe that Kelptyn will be the second patient to receive a Lymphocyte Infusion at Rady Children's Hospital. Kelptyn is one unique guy and the doctors are stretching to the limits of medicine to help him. Please throw him a good thought tomorrow afternoon as we send in a backup Lymphocyte army in hopes to make a few donor cells hold their ground. Thanks to everyone who continues to be by our sides on this roller coaster. We appreciate all your kind thoughts, prayers, and comments. Kelptyn's on the rebound once again. He just flat out refuses to get knocked down for long. His rash has almost completely healed and his EBV levels have dropped significantly since his chemotherapy just this past Tuesday. Hopefully, a sign that his lymph node is shrinking. So here's some pictures from today that my sister took. I like to think he's saying "blah, blah, blah" to PTLD cancer and moving on. Kelptyn's CT scan with dye showed one 11mm x 13mm lymph node, so his PTLD diagnosis lies much closer to lymphoma. However, Kelptyn's doctor was pleased overall with all his other recent test results in regards to his organ functions and response to medications. We will continue to knock down this cancer with chemotherapy while moving forward with the lymphocyte infusion procedure in hopes to make Kelptyn's body hold on to his donor cells. We are also taking steps towards a backup plan....beginning to search for a second donor should Kelptyn need a 3rd bone marrow transplant in the next four months.
Thanks to everyone who has signed up to be a part of the Be The Match Registry. Maybe we'll get lucky this time and find Kelptyn a perfect match. Kelptyn has been taking all of this like a champ, but he continues to cling to us all day and all night. It is unbelievable the calm strength, love, and peace he draws in just by being held. Kelptyn's rash has spread all over his body and he has had a fever on/off for a few days. However, his fever seems to have reduced over the past 24 hours. We found out yesterday that Kelptyn has indeed developed a secondary blood disease due to the transplants and medications. He has PTLD (Post Transplant Lymphoproliferative Disease). The disease can be as mild as Mono or as progressive as Hodgkin's Lymphoma. We are awaiting the CT scan/dye test results to find out more about what stage we have caught the disease. Kelptyn started chemotherapy last night in hopes to nip it in the butt right away. Now that we know this new secondary diagnosis we are not certain if Kelptyn can receive the donor lymphocytes next week or not. Kelptyn's doctor is consulting with other doctors once again for next steps. Kelptyn is continuing to amaze us by how strong one little dude can be. |
AuthorI am the mother of a child with a spirit that's larger than life. Each day I am reminded of what a gift the present is. Archives
July 2015
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