Odd but sweet

Spring has finally decided to grace us with her presence. We are getting out of the house more, which has everyone in a better mood. And the wee one's mood is changing before our eyes. Goodness. We knew it was bad, but it took that horrible month of steroids ending and the mood starting to improve before we realized how bad. Many of our friends and family who have witnessed him during this time have vowed to never again judge the parents of overweight, ill-behaved children, in case the child has a medical condition and not just overindulgent parents. A good reminder anyway, but one we tend to forget when sickness is not readily apparent. I know I have certainly felt judgement from strangers lately. I am used to strangers going all googly-eyed over my exceptionally calm, happy little man as he grins at waitresses, helps me pay for and bag groceries, stands patiently in line with me in the post office, proudly holding the mail to be sent. Now, I see that involuntary check in their stride, the searching for words, the inevitable, "how old is he?" Followed by, "What a...big, um...boy!" Sometimes I pull his shirt down over his tummy, pat it, smile, and say "yes, he is!" And sometimes I cave, giving into the societal pressure to feel guilt over failure to conform to a standard of appearance, adding that he has gained all of that chunk in the last month thanks to a round of steroids to augment his chemo regimen. And then I immediately feel guilty for even feeling like I have to justify. My child's appearance or behavior is none of their business, and it is not their place to judge. But on the other hand, maybe making them feel a tiny bit crappy about having judged a child with cancer based on his appearance will affect future judgements on their part and help spread awareness so that some other mama won't have to feel judged by yet one more person. I do know that while I would have wondered about adrenal issues, seeing an obese toddler in the past, and compared their weight to that of their parent or caregiver for clues, I was oblivious that a kid on steroids for something as common as asthma or allergies, let alone cancer or donor organs, could look and act like such a little monster. A lesson in tolerance is always good, even though it comes at the high price of personal experience sometimes.

^ This is a moment that would never have happened last week. Baby Alex would have been flung onto the floor, and there would have been a meltdown and much screaming of "NO"! Ahhh, welcome back, my boy...

Our celebration of his quick, if not easy, trip to remission was cut short Wednesday by a phone call from our oncology fellow, the liason between us and the hospital. We knew we could put too much stock in preliminary results, but it had still sounded pretty certain that the pathology was clear...turned out, not so clear after all. Given two more days to do whatever they do (regretting my decision to not go to medical school every day...not that it was so much my decision to make), they called back to tell us that six out of every one thousand cells were still cancerous, which, while obviously nothing like before, when almost all of them were, was still enough to put us in the high risk category. This means that our next phase of treatment will last eight weeks instead of four weeks, and that we are ineligible to continue on the low-risk clinical trial, but can now opt to be candidates for a high-risk clinical trial. I am not entirely sure what the schedule will be in the next eight weeks, but I do know that in addition to (I believe) weekly IV infusions of Methotrexate and Cytarabine (both of which he has had before, but only intrathecal, not in his bloodstream), and, it sounds like, some daily oral chemotherapy drugs, he will also receive weekly lumbar punctures, during which they will inject Methotrexate into his spine. Because of the 12% of kids who relapse, 20% from cells hiding in the spine after remission was thought to be achieved, the clinical trial we were offered focuses on extra measures to clean up the cancer in the spine. This involves also injecting Cytarabine in the spine in addition to the standard Methotrexate during lumbar puctures, plus hydrocortisone to control any resulting inflammation. Since his spinal fluid was clear of cancer cells in his initial biopsy (not to say for certain that none were present, but not enough to be present in the sample drawn), we are leaning toward remaining off-trial. This trial is five years old and still active, which bodes well for it side-effect wise, but there is always the risk of undesirable side-effcts any time an extra drug is used, and if we can avoid yet more drugs, we would like to, as long as the end result is no more cancer. Which it has over an 80% chance of being. The extreme-risk trial of the same nature has already been discontinued because of the side effects of the added Cytarabine. 

This all has to be decided by the time we go in on Monday, before they give him his first dose of chemo in this second phase. In spite of his fever Sunday night, it has been a wondefully quiet week. Since we quit the steroids, even his horribly explosive diarrhea has resolved somewhat. I'm hoping the steroids were to blame. It is still runny, but the consistency has become more watery and chunky, (TMI, I know), which means it absorbs better into a diaper instead of melted ice cream soup just running out everywhere. I am even using a few cloth diapers again, trying to get the sores on his bottom to finish healing and not filling our garage trash barrel so full of the foulness. 

At the moment, daddy is sleeping, having gotten home at 2 am, not that that's so late around here considering I haven't gotten the two babies to both calm down and go to sleep before midnight the last few nights. Big bubba and I are eating breakfast, my eggs between two slices of toast, his dipped in alarming quantities of Cholula pepper sauce, his new ketchup. Little bubba is in his swing, sleeping off his night of nonstop nursing and loud talking. The sun is shining, and Aunt Mary has given us a new double stroller, which we procured last night in a craigslist score, so before this sunny Colorado morning does it's usual trick of turning cloudy and rainy by noon, I plan to throw both big and little bubbas into it and go for a jaunt. Maybe even a run. We'll see how long the running lasts pushing two kiddos through our hilly neighborhood. I might be 25 lbs lighter than I was six and a half weeks ago, but running still uses muscles I haven't used since...well. Before we moved to Kansas, really. I tried to run there, but it just took so much more commitment than it does in Colorado. Here, the weather beckons one to come outside, to find excuses to stay outside. There, it often did the opposite. Running was something to push through and the reward was getting back to the house where the heater or air conditioner was running and the dust was not blowing on one's face. Colorado has been good to us. I can't imagine what we would have done had it not called us back when it did, putting us close to the heath care we needed. Just the thought of doing this from Kansas or Nebraska is exhausting.