Vacillating
Back and forth, back and forth we go, completely certain that one choice is right until a half hour later when suddenly the polar opposite seems the wisest option.
After twenty-four hours of research and discussions and lots of mulling, plus a quick meeting with our oncologist, we’ve narrowed down our decision to two options: All or Nothing. Either we remove the kidney and finish the next twelve weeks or we just stop.
First of all, temporary dialysis is not an option as we’d thought. As Mark and I figured out on our own last night and then had confirmed by the docs today, there would be no way for the body to divert its waste fluids to a dialysis catheter if a working kidney existed. (Although he did have temporary dialysis back in October 2007 following a surgery so I’ll admit, I’m a little confused.) We also learned that we can indeed do this next scheduled chemo with a GFR of 27, plus the one scheduled three weeks after that, but not the two that follow. And in the cancer world, there is no point in doing half a protocol as the strength is in the combination of drugs administered over time. Again, it’s all or nothing. So if we decide to move ahead with the chemo he was supposed to start tomorrow, we would essentially be committing to removing the kidney within six weeks’ time. “Essentially” nothing, we would be committing to removing the kidney within the next six weeks.
Or we stop. Right now, today, done with treatment. We assume we’ve done enough, that if chemo’s gonna work, it’s already worked. That our decision back in December to do the most aggressive radiation would have taken care of any potential spilled cells. That oncologists are so prone to over-treating, especially with children, that they never risk treating just the right amount. It’s the old hammer versus chisel analogy: We could probably treat this cancer with a chisel but we just don’t know so we use a hammer instead … and hammers cause all sorts of collateral damage. So we could figure we’ve done enough — we surgically removed the tumor, we blasted the entire area with radiation, we further blasted it with chemo, and that’s that. We could hold onto that kidney and hold our breath.
It is the choice between a bad thing definitely happening and a terrible thing maybe happening.
Some of you may be reading along and thinking, “Wow, how could they ever risk another relapse? Why not avoid it at all costs?” Well, I’ve thought that too in the past day but, like I said, I’m vacillating and after learning a little more about dialysis and transplant, I’m thinking that too should be avoided at all costs. It’s one thing to hear from the doctors who say things like, “Kids do well on dialysis” and another thing entirely to hear from the parents who say it’s worse than cancer treatment. I’ve reached out to some parents I know (in the virtual sense) and asked about their experiences with dialysis and transplant and what I’ve heard isn’t encouraging:
Worse than cancer treatment. (And this is from people who truly know, who’ve done both.) Worse than chemo and radiation. Harder on the child, harder on the parent, harder on the family.
I’ve heard about people feeling tired and letharigic all the time, even people (like Austin) who didn’t feel that way with chemo. I’ve heard about severe fluid restrictions and rigid diets, much much harder than the seriously modified renal diet we’re currently following. About kids taking forty-plus oral meds a day, when we’re forced to cajole and trick and bribe and threaten to get Austin to take a mere four or five right now. About kids with stunted growth because dialysis leeches the protein out of their system, starving their muscles of all their fuel.
I look at him today and he appears fine. Fine. A totally normal little boy, who is still growing and still playing and still eating and still peeing, and I wonder how I could subject him to something so horrible. How could I willingly take away a part of his body that is still working, maybe not perfectly, but still working to give him something I don’t know he needs? Something that, in addition to possible good, can also give him secondary leukemia or leave him deaf.
It is not a good place to be, not a decision any parent should have to make. We are both going back and forth, back and forth, every few minutes taking a gut check: “Which way are you leaning now, honey?” We’re good at communicating, Mark and I, we trust and respect each other completely. And I think we’ll come to a decision together so we can move forward together. We’ve postponed tomorrow’s chemo until at least Monday so we’ll have a little more time. Of course, neither of us is sure what will eventually make one decision stick over the other. I welcome your input, even if it’s based on nothing more than intuition. I won’t feel pressured to follow any one person’s advice and I’m certainly not asking anyone to make this decision for us, but I find it helpful to hear all sides and to consider all perspectives.
Sometimes I feel as if I’m standing outside myself, watching my life like it’s some tear-jerking episode on a family drama, like it couldn’t actually be happening to me. Of course, such a dilemma would probably be resolved within a television hour. Ours is more like that frustrating season finale where you’re left hanging because it may be years before we know if we’ve made the right decision. If there even is a right decision.
Maybe the right decision is simply whichever one we make.
Krissy and Mark,
I have been wondering about intermittant dialysis, but you have answered that question. You are already making the decision…it is the one that you and Mark can live with together. Easy for me to say this….consider using the best decision instead of the right decision. Right/wrong is too much like pass/fail. You have facts, other’s experience and your own gut and heart to follow to help you make the best decision right now for Austin and your family.
If I can help by telling you our experience with preparing for dialysis and then kidney transplant, I am a phone call or a cup of coffee away. Granted my experience has been with my husband, but I believe the premise is the same.
One thing is for sure….Austin and Braedon have the BEST parents!
Lots of love,
Helen
Well, I really don’t know what to say, other than your family is consistently
in my prayers. No parent should have to make such a decision, it just is not
fair. Go with your gut. You have made the right decisions all along, and I
know you will continue to do so. I do know that whatever decision you make,
you can’t look back, you can’t question your choice, you have to trust that
it is the very best decision for all of you to live with, and that you are doing the very best for your precious son. I feel almost wrong to voice my opinion,
because I have not walked in your shoes, but if it were me, I think I would
stop now and save that little kidney, and believe that miracles happen.
May you find peace with whatever decision you make. You are amazing and
loving people. Keep on keeping on!
Krissy, my heart hurts for you. I’ve been reading your posts every day and my admiration and respect for you continues to grow. Of course I cannot know what it feels like to be in your predicament at this moment, but I can tell you, for what it’s worth, that any decision you make WILL be the right decision. And I feel that in your heart, you would like to stop now and save that precious kidney. And that would absolutely be ok. I know from firsthand experience that the treatment can very often be much, much worse than the disease. My dear father, whom I lost to leukemia last year, used to say, you can’t make a perfect decision based on imperfect information. It’s not the most elegant of quotations, but I repeat it to myself all the time. These kinds of decisions are so hard because the future is simply unknowable. Just do your best. As a parent, that is all that is expected of you. Remember, the marathon analogy – whatever decision you make, there will be other crossroads in the future, and other decisions, and other possibilities to help Austin. If you stop chemo, and G-d forbid the disease recurs, you will have other options to consider at that point (right?). I hope so. You are a wonderful mother and whatever you decide to do will be the right choice.
You are doing all of the right analysis, and it is sooo… hard. The “Do no harm” is hard to latch onto, but could be the good road. You are right that docs get a momentum in a certain direction and sometimes checks are tough to inject. Is a longer window before another series an option?
Love to all of you, from the Lloyds
Dear Krissy and Mark,
I can only imagine how hard this is for you both, and my heart aches for you all. My only comment is this: you know your child in your heart and your gut, you know him inside and out. Your biological connection to him speaks to you and you have family history to call upon for baseline info. If you can filter out the “noise” and tap into the very real connection you both have with Austin, I believe you will find your answer. I once had a pediatrician tell me,”a mother knows her child better than anyone, I trust her intuition.”
God Bless you in your decisions.
Carol
Krissy and Mark,
Whatever you decide, you can trust that your decision was made based on the best intentions that you have for Austin. I think that preserving the kidney is a quality of life issue and one that has merit and value to making that decision. IF, the cancer were to return, then you can certainly deal with that as it comes, IF it comes. I wish you guys peace and comfort through this difficult time. Know that we are hear for whatever you need.
Karen
Mark and Krissy–
I read daily…cry daily…You are very strong people. I agree with Karen the little kidney that could…give that kidney a chance..Best wishes
Go with your gut and trust your intuition. Either way you are going to be faced with “what ifs” but pick decision that you can live with regardless of the outcome. My gut tells me you already made your mind up. Have you thought about asking him? I know he is really young, but sometimes they know what they want. After all in the end, it’s got to be HIS fighting spirit that keeps him going. You and your family will be in my prayers and your son is very lucky to have such amazing parents. The love you have for this tough, fun loving guy is evident in every post.
Keep your head high and if you haven’t already, pray for direction. I have for some of my tough decisions in the cancer world and it’s been amazing with the replies I get. Eventually I’m at peace with one outcome vs the other and I know in my heart that THAT’S the right decision for me.
Warm thoughts coming your way!
Hi Krissy and Mark–I read and think about you practically every day..And I agree with the comments before–follow your best intuition.. I think my gut would be to stop treatment and see if Austin is better without it, for now..And then, if not, go for the removal of the little kidney..Whatever you decide will be wise and loving and correct.I hope to see you all in better times—maybe Children’s Beach on Nantucket?That would be wonderful. Love, Teri
Wow – just don’t know what to say. Not speaking as a physician now, but as my “gut” feeling speaking, I think I’d do whatever I could to preserve that kidney as long as I could – but that’s just a gut feeling, not a medical feeling. It’s just so hard to know. I guess it would be good to know, statistically, how much better are the chances of remaining cancer free by doing another chemo cycle? That’s the number that would be nice to know. And if that number is significant, then it might make sense to do the chemo no matter what it takes. But if that number is not significant, then does it really make sense to take out the kidney and do more chemo? If you forego more treatment now, and the cancer returns, what do you lose by taking out the kidney at that time and then doing more chemo? I know it’s good to beat down the cancer as soon and as quickly as you can – I understand that – so I guess that’s the reason not to wait before doing another cycle, if you’re going to do it – but it sure would be nice to have at least some sense of how much more “protection” another cycle would really confer, in terms of keeping that cancer at bay, forever. I’ll think on this some more ….
Barbara