Tuesday July 3rd

A new day, a new medical treatment to master. This morning we met with the radiologist who will be doing radiation treatment on Liam’s primary tumor site. It’s a necessary part of his treatment and one that we’ve known is coming. But here’s the scenario. First, there are no signs indicating where elevator bank R and no one seemed to know. (“Elevator R – There is no Elevator R here!”) After a bit of a wild goose chase, we finally came into the doctor’s suite of offices through the back door…literally. (There is an elevator R but can only be accessed by 67th Street, something someone forgot to mention to us.) After a wait in the proverbial waiting room, we were led into a small examination room. Liam wanted to know who we’re meeting with, why we’re meeting, and what we’re going to do next. We have our normal bag-o-distractions – DVD player, collection of DVDs, lollipops, stickers, Caillou books (every one of which has been sent to Liam from his magical elves), magic juice, fruit chews, puppies, pillow, soft yellow blankie, and Caillou flash cards. These meetings are starting to become a huge source of frustration for us as parents. Imagine going over very important information, most of which you’ve never heard of or have no experience with but trying to understand so that you can ask the right questions while entertaining an active three-year old. And, more disconcerting is having a conversation about Liam’s health in front of him which is exactly how the meeting started out. Liam knows when he’s being discussed. He immediately retreats and gets very quiet. The meeting was even more frustrating because there were no clear cut percentages that could be given as to why we should also radiate his leg and hips, where he also initially had cancer but now is clear. Why would we want to expose our son to more radiation which we know can cause secondary cancers in about 15 – 20 years without statistics showing that if we put him at that risk, the neuroblastoma cancer cells won’t return? Of course, all this is happening while Liam is examining the small refrigerator in the smaller examination room trying to understand how the side walls on the outside could be warm while the temperature inside is cold. And when he discovered a thermometer in the refrigerator which he initially thought was a clock, it was a giant new discovery for him that stopped the meeting completely. We heard that a 1/3 of Liam’s right kidney will be hit with radiation beams which will impact it…but to what extent we don’t know. We heard that if we radiate his leg it could impact his growth – by maybe an inch – but it’s not a definite. That’s what’s so frustrating about medicine – the ambiguity. We heard that COG – the Children’s Oncology Group which is the national protocol group – would only radiate the primary tumor site, not the places where there originally was cancer – but we didn’t hear if that approach is more successful. We heard that Liam’s response to treatment has been excellent. But without clear answers, we left the meeting with more questions than answers. The radiologist and Liam’s team of doctors will be discussing the pros and cons to radiating his leg and they’ll tell us today what they think, but ultimately the decision will be ours. Radiation simulation will happen today and Liam will need to go under anesthesia for it. It requires him lying perfectly still on a table while they line up the radiation beam, hence the anesthesia. He’ll also receive a few small tattoos that the radiologists will use to pinpoint where the beam should point. There’s no margin for error with radiation. The tattoos are permanent but so small they look like dots. Radiation begins on Thursday and goes for seven consecutive days. There are two sessions/day – 8 a.m. and 2 p.m. Each session is about 7 minutes long but each is done under anesthesia which means no eating until around 2:30 each day and drinking clear liquids until two hours before each procedure. But, we’ve also been told that he’ll not have much of an appetite during radiation so eating hopefully won’t be too much of an issue. Ah…back to the no appetite. I’m not looking forward to the radiation sessions. I know it’s a necessary step and another weapon in the bag of tricks, but I’m just not looking forward to it. Before the doctor arrived in the exam room, Liam was practicing counting. Except for mixing up 11 and seven, he counted to 10 on his own. Somewhere in the odyssey of the past 16 weeks he learned to count. And he learned almost all the letters in the alphabet. As much as I dread radiation, I just want to get it over with. It will be another thing I can scratch off the “to do” list in keeping cancer at bay.