Stage 4 neuroblastoma. That’s what we’re dealing with. This cancer is extremely rare– about 500 cases or less diagnosed in the US every year.
The tumor originated in Reese’s belly, but the cancer has spread up through his chest to affect some of his lymph nodes, and it has also spread to his bone marrow. The fact that it’s affecting his bone marrow explains why he’s been so anemic. Since we’ve been in the hospital, Reese has already received two blood transfusions– poor baby. He’s been sleeping most of the time since we’ve been at the hospital, but today, we did get get him to walk a little bit.
This neuroblastoma is considered stage 4 because of the way it has spread. He is also considered high-risk because he is over 18 months old– high-risk neuroblastoma has a five-year survival rate of 40-50%. That’s not to say the cancer isn’t curable, but the treatment is very intensive. Here’s what his treatment plan looks like:
- Round 1 chemotherapy (5 days) followed by a three-week break
- Round 2 chemo, three-week break
- Stem cell harvest in Charleston at MUSC
- Round 3 chemo, three-week break
- Round 4 chemo, three-week break, PET scan to see how the tumor has responded so far
- Surgery to hopefully remove what’s left of the main tumor, which has hopefully shrunk significantly
- Round 5 chemo, three-week break
- Intensive chemo at MUSC
- Stem cell transplant (MUSC)
- Intensive chemo (MUSC)
- Second stem cell transplant (MUSC)
Most of the time, we will be at Palmetto Richland Children’s Hospital in Columbia, so we’ll be close to home. This is a dream-come-true because Matt will be doing residency at Palmetto Richland. But all of the stem cell/transplant steps will take place in Charleston at MUSC. This kind of sucks because the intensive chemo and stem cell transplants will take about two months… which unfortunately means we (Reese and I) will be living in Charleston while Cole and Matt more than likely remain in Columbia. That’s going to be really rough.
There are a lot of nasty side effects to the chemo that he will be receiving. Some long term, some short term, some less common, some more common– all frightening. And some of the drugs can cause secondary cancers down the road, years after treatment. Leukemia seems to be the most common secondary cancer. His first five rounds of chemo will each last for five days, and they’ll be separated by three-week-long breaks. Ultimately the goal is to cure him, and hopefully this intense regimen will do the trick. The next goal is to keep little man cancer-free. If he does relapse, the cancer will be more difficult to treat.
He will be receiving all of his chemo through a central line that was placed during his surgery earlier this week. This is such a blessing because he does not take IV’s well, and his little veins are so hard to find. We had some horrendous experiences with blown veins and failed IV attempts earlier this week, so we’re so excited that every future blood draw and drug administration can be done using his port. The downside to the port is that it is not allowed to get wet– so we will have to sponge bathe him until further notice. This will get easier once he loses his hair. As much as I don’t want him to lose his hair and his beautiful eyelashes, it will make bathing him a heck of a lot easier. Right now it’s difficult because we can’t really wash his hair easily.
The first bag of chemo started tonight, and so far, Reese seems to be tolerating it well. Hopefully the nausea medication keeps him feeling well enough to get a good night’s sleep– or as good a night as we can get when the nurse is coming in every few minutes to check on the little guy.
I miss my bed SO. MUCH. But not as much as I miss Cole. It’s been really difficult to be away from him, and he doesn’t understand why mommy, daddy, and Reese can’t come home with him. He seems to be doing well going back and forth between the grandparents’ houses, but I’m so ready to get home to him and have all of my boys there with me.
That’s all I’ve got for now. I’ll update y’all again with how Reese is handling the chemo in a day or two.