Our Thursday afternoon meeting with Dr Mascarenhas went well. First of all, it was great to see our beloved doc. He brings a smile to our faces. He had just returned from a conference in Brazil, and was on his way out of town again today. He examined Pablo's entire body, as well as his ability to walk on his heels and toes (OK, but P's walking is getting wonky - a side effect of Vincristine), and how well he could grip a piece of paper between his digits (still pretty good). This is all standard stuff that we've come to expect during these exams, which happen every three weeks - before each of the in-patient treatments.
On a physical level, Pablo is doing well. No major stuff to report in this realm. His body is bruised in pretty much every region, and some of the bruises are getting up in age. It's taking longer and longer for simple things like bruises to go away. Dr M has cautioned us to engage Pablo in simple play, and to keep him chill as much as possible. This is the hardest thing for him, and for us. Pablo is a crazy little dude whose normal life rhythm involves jumping off couches, stairs and beds. He has to work hard at slowing down. And we have stairs in our house—stairs that are super fun to fly down. We have set a new rule for Pablo—he must turn on the stairway light, and hold the railing. Obvious stuff, but he's not used to physical limitations. So far, he is abiding by the new rule. And he understands why the rule is in place. It helps that Dr M told him this as well. Sometimes, Pablo will get that 'fear of God' look in his eyes when we remind him that a rule is 'because of what Dr Mascarenhas said.' Whatever it takes.
After the exam, Pablo and Polly went to the play room. Once Polly got P outta the room, the topic changed to the big issue at hand: the clinical study, and how its findings affect Pablo's treatment plan. Overall, Dr M feels that we are on the right track to give P the best chance of survival. He frequently stresses the danger of reading things on the Internet, or attempting to superimpose details from another child's story onto Pablo. It turns out this was somewhat–not entirely—the case with our interpretation around the clinical study. Still, the mere fact that three children passed away, and a few others had abdominal probs (similar sounding to Pablo's) scared the hell out of us. Dr M understood this (of course), and then got to the specific business of Pablo. Here are the pertinent points from that discussion:
Dr M wants to reduce two of the chemo drugs by 20%. This is for a number of reasons: to reduce Pablo's recovery time between treatments, which will in turn, decrease risk of infection, and general liver problems caused by the toxicity of the meds. This is the one area where Dr M wants to align Pablo's treatment with the revised clinical study group. The silver lining in this change is that it knocks his five-day in-patient treatments down to four days. One less day in the hospital is a big win. There are three of these long treatments remaining. We check in Monday for the next one. After that, only two left.
That was the easy half of the discussion. What came next was a show stopper.
Dr M wants the Doxorubicin (Red Devil) dosage to remain at the same level as planned. This is the gnarly drug, one drop of which puts Pablo in the red zone for heart failure. Pablo is going to receive a high dose of this (for his body volume)—far more than a drop. The heart failure risk will be with him for the rest of his life. The risk is not tied to physical exertion or anything like that. It is just a general, all-around risk. On an emotional level, this is scary s**t. As cancer parents, we have to put emotion aside sometimes, and put science in the front seat. This is one of those times. Dr M feels that reducing the Doxo could reduce the effectiveness of P's overall chemo treatment—the chief aim of which is to reduce the chance of Pablo's cancer recurring anywhere in his body. If the cancer comes back—anywhere—it is not a good thing. Period. Jo Ann and I have decided not to relay recurrence survival statistics at this time. Our best shot at Pablo ridding this bad stuff from his body is now, on the first go-round. If we knock this cancer to infinity and beyond, he has the best chance of total remission. TOTAL REMISSION IS POSSIBLE, AND THAT IS THE ONLY OUTCOME WE ARE FOCUSING OUR HEARTS AND PRAYERS ON.
To that end, the goal is to kill any cancer cells that may be hanging around and growing in Pablo's body, and Doxo is thought to be a major asset in this war. Keep in mind, we are at war with an invisible, but very real enemy—recurrence of cancer—and there are no easy, risk-free plans of attack in this war. This is the part of the game where we're flying blind, in a hail storm, over a mountain range. Nothing short of that. The questions flying around in our hearts and minds include: Do we agree to have our son's body injected with a high dose of a drug that could stop his heart with no warning, or do we insist that Dr M pull back on the dosage? If we insist on the reduced dosage, and the cancer comes back, will we wonder for the rest of our lives if we did the right thing, if we did enough, if we should have done more? There is no easy or right answer on this. And we don't have to answer the question at the moment, so we will keep discussing. If we want to reduce the Doxo dosage, we'd simply cut off the final dose in February.
As Jo Ann and I have been writing this post, Pablo's been watching his Friday night surprise gift on Apple TV: 'Kung Fu Panda.' Two years ago, we thought of ourselves as a non-media family in terms of our child rearing. To see Pablo's face light up while watching this movie, you'd never know it. Of course, the sea change in our relationship with big media is kind of a necessity—Pablo would go crazy not being able to watch TV. No point in treating him like a Victorian Age cancer patient!
OK, time to get our little panda into bed....