It is one year ago today that Ollie and I first became acquainted with Children’s of Alabama. After a month or so of pain in his legs and persistent fevers, we arrived at the ER for what we thought was an infection in his hip. Oh, if only. I remember being upset when they told us we would have to stay the night so they could do an MRI the following day. That was the first of over 130 nights within the last year at Children’s of Alabama and Children’s Healthcare of Atlanta. The glass half-full perspective is that he has lived for a year with this disease, which is an amazing feat – the odds of this were not in our favor. But of course the year has not gone how we would have liked. He would be finishing up the frontline treatment protocol around now if he had responded the way we desperately wanted. Instead, we are scrambling to find something to keep the cancer at bay until a miraculous breakthrough in treating neuroblastoma is discovered. I thought maybe I would have some grand insight or wisdom to share on this anniversary, but I mostly feel exhausted and beaten down by this year and I still hope to wake up from this nightmare. I am in awe of what my kid has endured, and angry that he has had to go through it all. He is the strongest person I know. I have no idea how he puts up with all that we ask of him, and even manages to laugh and joke around sometimes (also scream and cry, but what seven-year-old doesn’t?). He is inquisitive, routinely raising his hand and saying, “excuse me?” to doctors and nurses to ask questions, and hears every thing that is said, leading to more questions. He knows the names of all of his medications and what their intended purpose is, and he assertively tells us all how he wants things, what he is willing to do, how he wants to do it, and what he wants in exchange for taking a risk. I know we are not easy patients, but I love seeing him demand a role in his own care. He inspires me – I have learned more about assertiveness this past year than I ever thought possible.
John Oliver started chemo again yesterday. There were of course communication break-downs. The chemo meds had not been ordered despite conversations last week confirming we would be receiving the medicines in clinic starting on Monday. The hospital only had the name brand form of the drug, and needless to say the cost was a bit shocking. However, the pharmacy was very gracious, and spent a few hours working on getting the meds for us, and Ollie was able to start chemo around 4 pm. He had been at the hospital since 7:30 am for his CT scan, so this was less than ideal, and his patience was tested (not to mention his father’s). It is frustrating to know once again we were at the mercy of a communication error, or as the pharmacist said, “someone dropping the ball.”
We received the best news we have gotten in quite a while – a CT scan shows no new growth on his skull; just the spot that we already knew was there. Towards the end of our Seattle trip, he was complaining of pain in his eye, and I felt certain a tumor was growing there. So, so relieved that is not the case. He is still having back pain, but we know there is a lot of cancer there, so that is not unexpected. We hope this current round of chemo slows whatever growth is taking place, and we may get on a clinical trial in the near future. The G-tube is still bothersome, but it seems to be getting better. He does not cry every time I attach or remove it, and that is a huge improvement. He weighed about 36 lbs today, and that is also wonderful progress. He is still not eating, but as long we get some weight on him and nutrition through his tube and TPN, we hope he will be strong enough to endure whatever treatment is next. He has been vomiting on a regular basis, at least once a day, and he hates it, crying and saying how much he hates throwing up. I try to stay calm, rub his back, help hold the bucket, and hand over tissues when he is ready to wipe his mouth. The pediasure feeds are one of the worst smelling foods in vomit form, so I’ve learned to breath through my mouth and keep my own gagging to a minimum. His body is very achy, and he is asking for pain meds fairly often, and they do seem to work wonders. We are very much taking it day by day, and I know this disease well enough to know that it the best we can do. It is sneaky and fast, and we must be vigilant about doing everything within our control to give his body the best possible chance of fighting.