She's right, it's not fair

In my last post I promised an update on Samantha’s recent MRI. The week leading up to her MRI’s are always very stressful for us, and for the MRI just before Christmas it was more so than most given that it would be the first look we’d have as to whether the new chemo was working. In any event, as a personal favor, the radiologist came out and gave us the news shortly after the scan, while Sammi was in the recovery room, still knocked out from the anesthesia. I guess we hadn’t realized quite how tense we were because when she gave us the news, we both started to cry, releasing a lot of anxious energy and expressing a massive sigh of relief. I never thought I’d feel like someone telling us that we could continue to pump toxic crap into one of our kids would feel so good, but this buys her more time, which in our house is the most precious commodity we have these days.

The doctors evaluate these scans along two dimensions – degree of growth/shrinkage of the tumor mass as well as the degree of enhancement based on uptake of contrast material. Two scans ago she picked up more contrast, which some doctors (but not all) believe denotes activity internal to the remaining tumor. On the next scan, the tumor demonstrated renewed growth and picked up even more contrast material, hence the need to restart treatment.

Last week, after nearly 12 weeks of chemo, the scan showed that the tumor was stable to marginally smaller (better than growth, but not as good as actual shrinkage) and “noticeably less” contrast enhancement, about as good an outcome as we could have reasonably hoped for. Since both indicators pointed the same direction, the decision to remain on the current treatment path was clear. Additionally, although there’s a debate about the importance of enhancement, we were encouraged by the (possibly faulty) logic that since it enhanced first, then grew, perhaps the reduction in enhancement might lead to shrinkage next time around (we can only hope).

Before going any further, I’d like to digress for a moment on the pathetic state of scientific knowledge in the whole area of measuring the efficacy of cancer treatments, particularly for slower growing tumors like Sammi’s. In the scenario I described above, we were lucky that both indicators pointed in the same direction but this is not always the case – take, for instance, Samantha’s bad scan last June. Because they only saw activity in one of the two indicators (and the weaker one at that), the best advice the doctors had for us at the time was to hold off on restarting chemo. In an abundance of caution, they didn’t want to risk unnecessarily pumping any more toxic nastiness into her than absolutely required, and the consensus view of our medical team was that the enhancement was perhaps an aberration and could quite possibly recede if left alone. Unfortunately for her, in this case, this turned out to be the wrong gamble – with perfect hindsight we can now conclude that the tumor was in fact active and doing damage at least since June.

In the case of the December scan, both indicators went the same way, but what if that had not been the case? Again, we would have had a very difficult decision to make -- perhaps the medicine would work if we just gave it more time. We’d hate to abandon a treatment that actually worked and move on to more experimental or more toxic alternatives because we didn’t give the medicine enough time to demonstrate, based on the fairly crude imaging technology available today, that it was having a favorable impact. On the other hand, if we chose to continue along the same treatment path for three more months in the face of conflicting data and the tumor kept growing, we would risk again sub-optimized her chances for long term survival with the fewest side effects possible.

It’s truly disturbing as a parent to feel like, although we’re blessed to have access to the finest doctors and great health insurance, we have to make critical decisions on behalf of our daughter with such imprecise information. Welcome to State of the Art pediatric brain tumor treatment today – it’ll be a subject of a future blog entry, but for those of you who are investors in our research endeavors, suffice it to say that we’re doing everything in our power to change this sorry state of affairs (and thank you for your support!).

In terms of an update on the chemo itself, I was clearly too optimistic in my last posting about how Sammi’s late December intense oral chemo regimen would go. The Saturday after Christmas was our “hard day” – the last day of the four most intensive days of oral treatments in her six week cycle. Whereas the three prior days involve taking one or two quick squirts of not so icky medicine out of a syringe, on day four she has to take two additional medicines which only come in capsule form. Like many kids her age, she can’t take capsules, so we have to open the capsule up (wearing a surgical mask and gloves) and mix it with whatever we can find that makes it reasonably palatable. After much trial and error, we had settled on mint ice cream as an acceptable medium. In addition, whereas her usual diet is fairly broad, for this weekend many of her favorite foods are off limits because certain foods may counteract the effects of the medicine. Finally, and worst of all, one of the three medicines makes her absolutely sick for hours at a time. She’s well aware of this fact, making it all that much more difficult to convince her to take the drugs in the first instance… I guess the satisfaction of hearing a quarter clink into her dog jar only goes so far.

By Saturday morning, she was pretty exhausted (as was I), having been woken up in the middle of the night for three days in a row to take her meds. She wasn’t feeling all that well before breakfast and really put up a fight, knowing what this day in the cycle has meant for her in the past. There were lots of emotions expressed along the way, but the most poignant moment was when she stopped crying and looked up at me with clear eyes and said “Dad, it’s not fair that I’m the one in the family to have a brain tumor. Why me?” I’d trade places with her in a minute if I could.

She finally did get the morning meds down -- Cindy, as always, working child psychology miracles where I failed -- then didn’t have much appetite for breakfast and was generally lethargic all morning. At around noon the vomiting started, and she spent the over three hours squatting in front of the toilet, heaving. She was miserable, and I don’t blame her. Finally, at about 3:30 she fell asleep while resting on the couch.

While seeing her sleeping soundly seemed better than watching helplessly as she her pukes her guts out, it presented two challenges. The first was a lingering concern about dehydration. We’ve been through this several times before and at some point we virtually always end up having to bring her into the ER for an exam and IV fluids . Given that we were in the midst of a holiday long weekend in rural VT (and trust me, the local hospital up there is a far cry on the quality spectrum from Children’s Hospital Boston), neither Cindy nor I were looking forward to this prospect. The second, and more pressing problem related to her meds – the chemo is designed for doses every six hours for a reason – they’re essentially trying to knock the tumor back on it’s heels with repeated doses of the same medicine on carefully timed intervals (picture a boxer jabbing at his opponent). We didn’t want to just let her sleep indefinitely and create the opposite problem where she’s able to hold the meds down but they’re less effective because the interval becomes too great. On the other hand, we only had a very limited supply of medicine available and giving her meds just to have her throw them up six minutes later would defeat the purpose – for the medicine to be absorbed by her body, we’re told that she needs to hold everything down for at least two hours.

Ultimately, we woke her up at around 5 pm and offered her all sorts of hydrating options – popsicles, Gatorade, juice, etc. She was a good soldier and tried to get some down – we thought we were doing great for about 30 minutes, then things started coming right back up at us again (literally). By about 6:30 pm we were both at the end of our ropes, and we found ourselves on the kitchen floor, yelling at her as well as each other, while Mikki and Ali did the best they could to stay out of the way and out of trouble. Not good.

After some heavy negotiation, Cindy and I finally agreed that the anti-nausea medicines we had been using was clearly not working and we had to find a way to get the one we did have and that does seem to work into her. This may sound obvious, but it’s actually not – she doesn’t like the taste of that medicine either and in past situations, had gotten so worked up about the prospect of taking it that she vomited it back up as well. I’m convinced that the later is a psychosomatic rather than a purely physical response but it’s disconcerting regardless. We really didn’t want to pin her and shove it down because that’s too hard on everyone, so we decided to mix it into a syringe of a different chemo medicine she will consistently take. This is a very dangerous thing to do because she actually will take that chemo med, and if we tainted that in her mind, we would violate an important trust and risk creating a different problem entirely. In her first chemo regimen two years ago, we tried mixing a different anti-nausea drug with ice cream – great idea, except for the fact that she hated it and proceed to refuse to take it, or eat ice cream, for nearly a year. That said, she ended up taking it this time without incident (but did notice the taste difference, which we chose not to dwell on) and about an hour later, her stomach settled and she was able to eat a small dinner.

Unfortunately, at this point, it was after her usual bedtime and nearly 12 hours since she had taken the chemo med that legitimately makes her sick. Even though we knew she had something in her that would help, we couldn’t tell her that, and ended up with an hour long 2 on 1 negotiation with our little darling before she finally got it down and went to bed.

To add insult to injury, because of the delayed timing of her doses, we had to push her last dose at about 2 am. It’s a the most intrusive dose due to the volume of medicine required, and it entailed waking her up fully and dealing with a very unhappy and uncooperative patient, this time on the floor of an upstairs bathroom. In the course of the negotiations, the ice cream melted, causing the medicine taste to come out more strongly and forcing us to mix in still more ice cream – she now had a rather large bowl to get down. As before, she got herself worked up and ended up vomiting up a fair bit of the medicine laced ice cream she had just eaten. At long last, and only after many tears were shed, she finished the bowl, but we have no way of knowing how much of the medicine actually got and stayed into her. By this point it was almost 4 am and Cindy and I were completely numb. We poured ourselves back into bed for a few hours of rest before Ali and Mikki (early risers both) arose to start a new day.

It’s now several weeks later and I’m still having a hard time finding the right words to express my frustration and anger at the situation we find ourselves in. Our daughter has a horrible disease for which there is no known cure – many kids die and even the survivors are typically adversely affected both by the disease and the long term toxicity of treatments presently available. We have a treatment available to us which has a long history of only moderately bad side effects (remember, it’s all relative in our world) and which appears to be keeping the tumor in check, but we can’t figure out how to get it in her without inflicting major psychological mayhem on every member of our family. When we do get it physically into her, half the time she pukes it back up and we have no way of knowing how much of the actual medicine her body was able to absorb.

Samantha is right, it’s not fair.