I’ve hesitated whether or not to write a post with an update on Oliver since there isn’t really anything “new” to update and things can change so quickly, BUT I’ve also had pretty close friends and family ask what is going on with Oliver right now so I’m going to write a quick summary and update!
Oliver had his bone marrow transplant December 22, 2018 (about a year and a half ago). He has done really well since then, but in October, 2019 Oliver’s labs showed that his donor bone marrow cells were going away and his old cells were coming back. Almost always with JMML or a transplant, old cells coming back means the cancer is coming back…except that isn’t what has happened with Oliver. They tried to give him “boosts” of his transplant cells to try to save the transplant, but it didn’t work. At his last check, he only had 16% of transplant cells left.
Somehow his old cells seem to be coming back with no sign of cancer. Our doctors have told us they know of 3 other cases where this has happened – the child had old cells take over the transplant and they didn’t have cancer come back. My mind can’t fathom how rare Oliver’s case is. His type of cancer already only occurs in 1 in 1 million kids…and then to have this happen is even more rare.
He is currently getting monthly lab draws and bone marrow biopsies every 3 months. When they do the bone marrow biopsies, they send the cells to UCSF in San Francisco, California for genetic analysis to check for any cancer mutations. Our doctors tell us the longer he goes without the cancer coming back, the more likely it is that it will not come back. So far his monthly labs have looked normal.
Unfortunately, because Oliver had a transplant, he is at a much higher risk of other types of leukemia and other cancers down the road. He will need regular monitoring for his whole life. If Oliver did show any sign of relapse, he would immediately head in to a second transplant.
It is such a strange place to be in…Oliver seems just like a “normal kid” right now for the most part, but we always have this shadow hanging over our heads. He only takes 1 medicine to help protect him against viruses.
Oliver did really well through all of transplant. I follow two other children who got bone marrow transplants at Seattle Children’s right around the same time as Oliver and BOTH kids had inpatient stays this past week from massive complications from transplant. I am fully, fully aware of the huge blessing it is to have Oliver home in Bellingham with us.
We just try to live each day praising God for the gift of Oliver and hoping for the best while knowing life on Earth is often broken and imperfect. Of course I worry about Oliver – are the bruises on his legs normal toddler bruises or something else? Is he napping longer than a normal toddler? Is he eating enough? Is he eating healthy enough? Most of the time I’m able to put these thoughts away and just be thankful for Oliver. We are SO incredibly thankful that Oliver is pain-free, nearly medicine-free, tube-free, and full of so much life.
One question we get asked every so often is if Oliver is immune-compromised. He is and he isn’t…the common cold shouldn’t be deadly to him anymore like it could have been right after transplant, BUT cells do weird things sometimes after transplant and we are never 100% sure if his immune system is totally functioning normally. We still try to be fairly careful with germs (and so many other people are now too with COVID!).
We are so thankful for everyone who has faithfully prayed for Oliver and our family! I wish I could express my gratitude in a better way but I don’t know what else to say other than thank you!