Recently, Harrison has had a major setback of sorts. From the beginning he had struggled taking medicine. He still cannot swallow pills, despite working with a specialist. We’ve tried EVERYTHING.
The past few days have seen an increase in Harrison’s struggle with the medicine, particularly the Gleevec, which is the most important drug he takes. We have had to crush the pills since the beginning, against the advice of the maker and pharmacist [crushing them causes puts us as risk, but we do it for him].
We’ve put them in rice crispy treats, peanut butter, ice cream, chocolate syrup, maple syrup, and fruit juice. Usually Harrison does well for a week or so with our “new” method, then begins to vomit every time he takes them. In the past several days, taking just the Gleevec has taken over four hours, taking a great toll on all of us, him especially. Most days he throws up the medicine three or four times before finally keeping it down. The shortest amount of time taking medicine requires is two hours, and several re-takes. More than once we’ve used five days’ worth of Gleevec in one day. At $4500 a month, our insurance company can’t be happy with that.
I tell you this part of our story to ask you to pray for two things in particular.
First, please pray that Harrison will learn to swallow pills. Even the specialist is struck by his determination to NOT swallow them. And until he does learn to swallow them pray that he’ll not make himself sick, subjecting himself to multiple, painful episodes every day.
And second, pray for strength for Ginger and me. It’s hard enough knowing our son has cancer, and that his cancer is a rare, previously untreated kind. We have no way of knowing what odds he has of remaining in remission: there is currently a 0% survival rate for those kids who have had this.
But daily it’s painful to watch him get so worked up in anticipation of taking medicine that he sometimes gets sick before even taking it. It pains us to watch his struggle. And with that, there is also life to be lived, and jobs to be done. I can’t leave my wife with the two- or four-hour task of giving Harrison his medicine. And it is hard to explain to people how taxing that process alone can be. There is just so little “left in the tank” after four hours of fighting with medicine and watching Harrison become so violently ill.
I start every day with things I simply have to get done, and find myself either too occupied or too exhausted to get to them. I know it is hard for people to understand the toll caring for a cancer kid takes on a family; I honestly never understood it. There are two teenagers who have very busy and demanding lives. They both have sacrificed so much, and are willing to continue to do so, but their needs far outweigh their wants.
It’s nearly impossible to sit down to write a book, or make a phone call, or visit with a friend after a morning of pain and heartache. It’s not a matter of will, but one of time and energy. When medicine starts at breakfast and doesn’t end until lunch, the day is basically gone. And so is ones energy. If nothing else, I’ll be a more understanding man after all of this.
One day, this will all be better. But until then, there is another spoonful of poison-laced peanut butter I have to try to force into my son. Because if he doesn’t keep it down, the cancer returns. And I’d rather not re-live these last six months.
And if I don’t return that email promptly, please bear with me. I’ve never been good about that before, quite honestly. At least nowI have a good excuse.
Thanks for being to kind, and patient. Most importantly, thanks for your thoughts and prayers for Harrison. He’s in the battle that really matters.