Bone Marrow Transplant and Radiation
Uriah is set to start his second round of immunotherapy Monday. Since the last post, he finished his bone marrow transplant and radiation. There’s so much that goes on with neuroblastoma, it’s really amazing.
Bone Marrow Transplant
Uriah was in the hospital for a month for the process of the bone marrow aka stem cell transplant. He had what is called an autologous bone marrow transplant. That means he donated his own cells, which were collected months earlier and frozen with preservative until he needed them.
During the bone marrow transplant Uriah got what was effectively his seventh round of chemotherapy. Except this was at high enough doses to basically kill off all of his bone marrow. He needed to donate new cells back to himself so that all the various cells the bone marrow makes; white cells, red blood cells and platelets, could be produced again.
If you bone marrow doesn’t work, eventually you’ll die.
The day Uriah got his stem cells put back in we also had a visit from a charity called DC Strong. Mark was out on the west coast visiting a few kids and we felt very honored for them to come see Uriah. He got an ipad, which really helped through the misery of transplant and a toy digger for the beach back home.
It was not fun and it was not easy. There were major fevers with fear of fungal infection perhaps in the lungs. There was severe mucositis, where basically the whole GI tract was inflamed and irritated from mouth to butt. He didn’t talk for over a week due to the pain and sores in his mouth. He needed intensive pain medications and a wean off of them.
Luckily, there was no major organ damage and his cells engrafted. I’m a terrible record keeper, so I can’t tell you how long it took for the bone marrow to begin showing signs of life.
We would have gotten out sooner, but without eating or drinking for nearly 3 weeks, it took a while for Uriah to be able to tolerate anything by mouth, or rather, in his NG tube. We couldn’t go until he could at least tolerate enough food and water to stay alive.
We got to go home for a few days before the next phase – radiation.
About 3 weeks after finishing up with the bone marrow transplant Uriah started his radiation treatments.
He received photon radiation, or the more common type currently. There is an ongoing debate about proton vs. photon radiation and we had some heavy discussions with the radiation oncologist about the benefits and risks of each.
We would have had to travel for proton radiation, and due to the location of his tumor and the way this cancer acts, we agreed that there was no clear benefit to proton radiation so we stayed at the home hosptial to do it.
Uriah got his first tattoos, some ultraviolet pink marks on his abdomen. They’re only supposed to show up under blacklight but we can see them from time to time. He did this while he was sedated for the planning CT to map where the radiation goes.
The next week he started his actual radiation therapy. Though somewhat mundane seeming, it was actually quite stressful.
Because of his age, Uriah had to be sedated for each of the treatments (twelve total). The treatments themselves only last about 15 minutes, but the prep and wake from full anesthesia made them take about 3 hours total.
Add to this that you have to be NPO – or have nothing by mouth, not even water, for hours before hand. Basically this meant Uriah wasn’t able to eat or drink until almost 3 or 4 pm most days. Most of the radiation sessions took place around 1 or 2 pm. This was not fun for a kid just regaining his appetite after a month of no eating. And we couldn’t even give the NG tube feedings.
Really, the whole family was basically on a fasting diet until afternoon because we couldn’t bring ourselves to eat in front of him or let him smell anything.
Overall he tolerated the radiation well (at least acutely – because, of course, there are long term risks). He only vomited once. He was a bit tired, but, it was hard to judge how much of that was due to the bone marrow transplant and so on.
On one of the last days of radiation Uriah was finally fitted with his hearing aids. They came and took molds for us while he was inpatient for the bone marrow transplant and it took about two months to get charity funding for them sorted out as insurance refused to cover them.
I’m not sure if you’re aware of this but hearing aids for children cost $5,000-$7,000 on average. Luckily, we were able to find a charity that helped us to cover that cost, and we will pray we never lose one.
That reminds me, I should probably see if I can insure them. Anyone know about that?
We’ve been back to the audiologist a few times since to get them further tuned and get more hearing tests done based on the additional hearing loss that occurred since the bone marrow transplant.
It’s really tricky for Uriah because he is above average in his speech and comprehension of language for his age. He can actually hear most speech fairly well. But there are certain sounds and letters that just don’t come through.
So, while an adult may be able to piece together what is going on, even if they miss a few words, it’s really important for children who are still developing speech to fully hear things.
And if we’re out in public in a loud place, good luck. He looked at us in a restaurant and said to his Dad “I’m sorry Dada, I can’t hear you.”
But we’ve got them for now and hope they help and he will be amenable to wearing them regularly.
An aside on hearing aids costs
Funny note here, our state, Oregon, actually passed legislation requiring insurance to pay for hearing aids for children. But thanks to a loophole in the federal law regarding ERISA, our privately funded insurance plan doesn’t have to follow the state law. Effectively, that means that the only plan that has to pay for hearing aids is the state medicaid plan. Which, we SHOULD qualify for on CHIP program (only for Uriah, not for us parents), but were told we can’t and don’t because we carry private insurance. I know of others who have primary private insurance but we’ve been unable so far to get an acceptable reason and resolution on this and have just had too many other things going on.F
A couple of days after radiation finished we were finally able to go home.
FOR FIVE WEEKS.
It was wonderful. And strange. It was kind of like being sent home with a new baby. No weekly appointments? No lab tests (are you sure he’s not going to bleed to death?). We had plenty of meds to give, still needed sponge baths, still dealt with his central line flushes and dressing changes daily and weekly. But, we were home.
I started back at work two days a week, which feels like a TON when you’ve got all the things going on with attending to a chronically ill child and are trying to unpack and develop some new kind of routine after being gone from home for eight months. But, also trying to jam pack in all the things we feel like he missed over the year.
Just as we started to feel kind of normal again it was time to head back up for the beginning of immunotherapy and 3 months follow up scans.
I’ll follow up with that on my next post.