Never-ending
I don’t use that word lightly. I’m not just exaggerating or whining about how long our days and weeks and months have become. No, I really mean it: I can’t clearly see an ending.
This blood pressure issue, while a minor sideshow to the grand drama of Austin’s cancer, is one of those sneaky things that is going to follow him — and us — forever and could impact the rest of his life.
He’s had high blood pressure since all this began nearly three years ago. It’s due to the damage his kidneys have withstood (or not withstood … maybe sustained is a better word here). The real bummer is that hypertension is both a sign of kidney damage and a cause of kidney damage. In order to keep that little partial kidney as happy as possible, we really need his blood pressure in a perfectly normal range all the time. Which it never seems to be. Now, even with the addition of another medication, it’s still running slightly high. And the manual cuff I have at home is frustratingly difficult to use, so Mark just ordered me my very own (and very expensive) automatic blood pressure machine. How’s that for a nice Mother’s Day present?
And then there’s the near certain failure of that kidney. I am so hoping we can make it at least a few months into the post-treatment period before dialysis. Just to give us a much needed break without the two things overlapping. Of course, I really want his kidney to last the full two years, but that seems less and less likely each day as his numbers creep in the wrong direction, one slipping down that we want to stay up and others jumping up that we want to stay down. He has another GFR on May 17 so we’ll see if it’s managed to hold steady at its new low or if it’s dipped into the this-is-really-happening, time-to-start-dialysis range.
And then there are all the other risks far down the road that will trail us for years to come. Assuming a transplant goes well and this cancer doesn’t return, he still has a high risk of developing a secondary cancer, probably leukemia, from all the radiation and chemotherapy his body’s been subjected to. And transplant comes with its own sets of lifelong risks even if he gets a nice new kidney.
I hate the idea that his life might not be normal. That, more than anything else, is what I wish for both my boys. Not super fabulous, not spectacularly extraordinary, just normal. So he can be a kid and go to school and learn to read and play kickball and ride a bike and have a girlfriend and go to college and live by himself and get a job and see the world and fall in love. So he can be a dad and then a grandpa. But some days I feel doubtful that all those things could ever happen. The thing I fear most is, well, it’s The Thing we all fear most. But the thing I fear second most is that he gets so bogged down by all of this, so burdened by lifelong health problems, that he someday says to us, “Mom, Dad, why did you bother? Why did you work so hard to save my life when now my life sucks?”
I know it seems unlikely. Not our joyful little Austin, who never lets anything get him down, who still runs and leaps and climbs and rides, who manages to squeeze joy and laughter out of each and every day, no matter the horrors he endures … our happy little Austin would never say such a thing. But I worry nonetheless. I worry it will be never-ending.
We think Austin is going to continue to be that joyous person who weathers each and every storm with energy and verve. We send our love and hugs. Donna and Tom
I know I don’t know Austin like you do but thinking of lying on your driveway yesterday with him watching the “helicopters” fall from the trees, I don’t ever see that happening. Austin is an amazing little boy with an amazing family. Emily
Krissy, I think of courageous you all of the time. I’m glad that you were able to put some of the fears that you have to have into words you are sharing. It is therapeutic, I think, to voice one’s worries. I could see the worry in your posture just now coming back from taking Braedan to school. A little sag is sometimes what one needs, with a little relaxing. Shoulders back and head up is therapeutic, at intervals. Your writing is mostly shoulders back and head up, as is your stance, and you and your little boy, the charmer, are lifting many people’s spirits, and you are doing hard work. Hugs from next door, Georgia
Krissy, there’s so many things to worry about and think about, sometimes it just gets too overwhelming, and then there’s the unfairness of it all…..But we just keep going, one step at a time, I know, believe me. Just when you dodge one bullet, it seems that here comes the next one from left field – it never seems to end. I really do know how you feel, having been through it with Abby – and I agree, it’s a lifelong thing … but you just have to keep going. Austin’s never going to look at you and ask, why did you bother. Are you kidding? He’s always going to look at you and know in his heart that he’s had the best Mom and Dad and big brother that anyone could have ever wished for – that’s what he’s going to be saying …. so don’t ever worry about that. Wish we could be there tomorrow at the walk, but we had something else planned from a while ago. But will be thinking of you and all the walkers…
Barbara