Long Distance Run Around

I picked Adam up from school at 120pm. I actually had to wait while the school secretary figured out where he was. He and his class were in health, which is apparently what they call recess now. He was outside playing games with his school mates. I hated to have to pick him up only to take him to the oncologist.

Our appointment was for 2pm. We were seen around 245. Dr. Kuttesch told us that the bone marrow test was negative. Very good news. But he also told us that Adam would have to get a 'spinal tap' tomorrow because he 'forgot' to order it last Friday when Adam was admitted to get a bone marrow biopsy and have his port-o-cath implanted. Oh well, every body's human, even world renown pediatric oncologists. All that was ok. What's disheartening is that Adam will have to get radiation therapy. Martha and I had figured, based on what we thought we were hearing, that Adam would be spared this particular treatment. But no, Dr. Kuttesch says that there could be microscopic pieces of the tumor left over from the surgery and this would require about 20 treatments of radiation over a one month period.

Before this gets too confusing, here is the schedule.

Adam starts chemo this Thursday. He will be admitted at 1pm for about 24 hours. Adam will receive chemo infusions every three weeks on Thursdays. The first 12 weeks will include three medications. They are all pretty nasty but one in particular has some serious long term side effects that this 'low risk' protocol is supposed to reduce. After the first 12 weeks his chemo meds will be reduced to the two less dangerous meds but radiation therapy will be added for one month. Radiation treatments will occur Monday through Friday for 4 weeks. Twenty treatments in all.

This so called 'low risk' protocol will last about 6 months. The alternative is 9 months and I have to keep telling myself how much worse that would be.

Because Adam will be getting radiation we now have additional side effects to worry about. These include 'dry eye' while Adam is getting radiation and possibly for a while afterward or even permanently. 'Dry eye' is what it sounds like. The radiation treatment interferes with the eye's ability to produce tears. It is a painful and irritating condition. Dr. Mawn, whom we also saw today (remember she was the eye surgeon who removed the tumor), says that there are effective medications to help with the side effects. More medications. Because of the radiation he will always have to be wary of the sun and wear extra protection. He will have a higher risk of skin cancer for the rest of his life.

Just last night I was letting myself imagine the end of this thing and the party we are going to throw when this cancer is smashed, destroyed, eliminated, cured. Denial creeps in silently and without opposition. These appointments today brought me once again to reality. I put some of what I have been reading to use. Dr. Kuttesch's 'confession' that he forgot to order the spinal tap, Dr. Mawn's front desk staff's obliviousness to customer service basics and finally Dr. Mawn's honest, but distressing, opinions about radiation and its effects on the eye could have all sent me off. Instead I just focused on my 'in breath' and my 'out breath.'

This thing is a long distance run, not a sprint. There will be hills, ups and downs, straight aways. Martha and I have to stay steady. For Adam and for Camille and for ourselves.

Peace.