Delayed Intensification Day 18: Two evils

On Monday, Brock, Scarlett and I visited with the radiation oncologist at St. Vincent’s Hospital. We were hoping to get most of our questions answered and feel better about whatever decision would be made. Unfortunately, after leaving, we were speechless with terror and felt like either option is a bad decision that we will regret in the future. Either option has our daughter’s life at stake. We have followed protocol for all of Scarlett’s treatment. I have understood the risks vs benefits of every medication but have known that, in the end, I am poisoning my child for her own good. I can’t say that I feel the same about radiation.

A little background: T-cell ALL has a higher rate of relapse than B-cell ALL because it tends to “hide” in the brain. Because of this, full cranial radiation is the standard treatment in T-cell patients. In most cases there is no question that the benefit outweighs the risk. In the case of toddlers and preschoolers, the lines are more blurred. The brain develops at such a rapid rate at this age that there are far more severe and frequent side effects.

Option 1: No radiation. The leukemia specialists at Children’s Hospital and Scarlett’s oncologist are looking into foregoing radiation and instead doing extra intrathecal chemotherapy throughout the maintenance phase of her treatment. Without radiation there is an 8% chance of relapse. However, Scarlett has never had a positive lumbar puncture which means that they have never found any leukemia cells in her brain and spinal cord. We are hoping that this is a good indicator. She does well with LPs – so well that she doesn’t get sedated which minimizes risks and complications. We would eliminate the side effects – both long and short term – of radiation. And, to be completely honest, we are far less afraid of the monster that we know. But 8% is 1 in 12. And how treatable is a relapse? Would she be able to fight as hard if she relapsed? What other treatment options are there? I have contacted a lot of people and hospitals and studies to try to answer some of these questions. But truly, only time will tell.

Option 2: Radiation. Set to begin March 24 with the possibility of a 1-2 week delay due to count recovery. We begin one week earlier with a CT scan and the making of a full body mold. The mold was described as a bean bag like material that sucks the air out so it is permanently in the shape of her body. It prevents her from moving during the procedure. A mask would also be made for head by “melting” a hot, wet material over her face so that it fits her head perfectly and she can’t move an inch during the procedure. Each time she is radiated, it will last about 3 minutes. She will have eight sessions over a week and a half period. Fortunately or unfortunately, she will be sedated for the procedure. So we will have to wait about two hours afterward for her to wake up again. She may get radiation burns on her head and have patches of what little hair she has to fall out. She may experience swelling of the brain which can lead to severe nausea and vomiting. She may develop hearing loss and cataracts. And those are just the short term side effects. Long term, we worry about learning disabilities, cognitive impairment and worse. The chance of relapse after radiation is less than 1%. But there is also an equal chance of developing brain cancer. Ugh! I want to throw up just thinking about that.

Right now we wait and see what the doctors decide. You forget so quickly what happens during each cycle. We are back to the beginning again and as I watch her take 6 little naps today I remember her falling asleep in the swing last summer. She has been incredibly antsy today which makes me wonder if she is in pain. Her voice is hoarse which could be a reaction to the vincristine or the cold that she has. And she won’t open her mouth when she talks which could be jaw pain from the vincristine. Her constipation has been so regular that she is now afraid to go poop. Her ANC today was 165 so we are on extreme neutropenic precautions. We will not be going anywhere or having any visitors other than the usual people until she is back in a safe range – which could be up to six to eight more weeks. We just pray that we can get through that time with no fevers or hospital stays.

On the bright side, she has been wearing undies more often. Since she was fully potty trained before diagnosis, this is a huge positive for us! We have also been wondering in the back of our minds if if we contributed at all to her leukemia. When she first stopped walking, her pediatrician was hesitant to do x-rays until we figured out where her pain was. It migrated from one side to the other and from the hips to the ankles. We didn’t want to expose her to the radiation of an x-ray. But as her symptoms progressed and we began to worry more, she ended up with about 10-15 x-rays over four weeks. The radiation oncologist reassured us that that radiation did not cause her leukemia. It was a small weight off our shoulders. We also learned that she will get her last dose of chemotherapy two years after she started interim maintenance. That would be Thanksgiving 2016. Something to truly be thankful for!