There is a certain diligent paranoia I imagine all cancer-parents have. If Joel seems tired and cuddles too much, a gloom sets over Ryan’s face as he begins to work through all the possible ramifications of a sick Joel. If Joel trips, or loses his balance I begin to think of all the places the new tumor could be hiding, even though he is still fairly new at walking and a few stumbles are part of the toddling process. I am always watching for any sign that something is wrong in Joel, and when I find something, I begin to wonder if I’m being ridiculous. We mostly notice things, comment to each other, and watch Joel. Usually if it’s significant it gets worse. A handful of times I’ve made the call to our doctor too soon, declaring that Joel seems weaker or his balance seems off, and by the time they can examine him it really seems better. I always have to remind myself that kids fall and kids get sick and not everything I notice has to be related to cancer. (I suspect this noticing of symptoms, real and fantastic, is a skill I may never be able to turn off when it comes to Joel.)
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This week, like many others, I noticed something. Joel did not want to climb up the stairs himself. So often, in the past, he would let go of my hand in favor of a railing or even the support of a wall, so he could climb the stairs “himself.” This week, he walked to the base of our two little steps at the front door, and laid down and cried. When my friend helped him up the stairs, she had to hold both his hands way over his head and he leaned way back into her as she had to almost lift him up each step. Which reminded me that just the day before, or had it been a few days, he was coming in from the back yard and put one foot up on the step and then fell backward. It had been kind of a bad fall, but I was learning not to turn each of those into a dramatic call for a new MRI. I waited, I watched. I mentioned it to a nurse on the phone offhand, and told her I hadn’t really tested it by having Joel climb our full set of stairs yet. That night, I asked Ryan to help Joel up the stairs and tell me if he could do it. The simple answer was, he couldn’t. He was leaning way back, relying heavily on Ryan’s support. This was my boy who proudly climbed all the steps at the Lincoln Memorial, who rushes to any set of steps he can find at a playground or anywhere else, because stairs are a challenge and they are something he can really accomplish.
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So, I called the nurse back and left a more detailed message, telling her there was definitely a new and distinct deficit in Joel’s ability to climb stairs, that I think it had developed in the last week or two, but that I knew for sure he was climbing steps happily last month. I told them I suspected it was a balance issue or a strength issue because he did not seem to be in pain, he just leaned too far back on each step. They called me back the next day and told me they wanted to see Joel. They suspected radiation swelling. (Not good of course, but better than I had been imagining, I had spent two days wondering what tumor had stopped shrinking and started growing, or appeared out of no where in the brief three weeks since our last MRI. I had been emotional, crying as I drove around town, telling God, I trust you, and your timing, I just don’t want to do hard things right now.) And isn’t that my constant prayer through this whole life? I’m willing God, but don’t make me.
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So we got to the doctor’s office and I watched Joel climb on and off a rocking horse, even keeping his balance on the tiny wood plank of the rocker that he stepped on with one foot as he swung his leg over the wood horse. He rocked intensely and I kept thinking, “Can a little boy with balance issues stay upright on a rocking horse like this?” He moved quickly and smoothly with all the energy he’s ever had. Had I done it again? Had the overly-nervous cancer mom not waited long enough to see if the symptoms she had noticed might be the result of a normal illness or occasional fatigue? They examined Joel and he seemed great. I pointed out that in every other aspect Joel seemed great to me, it was only on stairs that I noticed a problem. So we took Joel to the stairwell. He approached the stairs with determination and excitement, so again, maybe it was a phantom symptom. He took hold of the handrail with his left hand and my hand with his right, and he set up the stairs, but as soon as his foot hit the stair, he leaned back dramatically and then pulled hard on the handrail to pull himself up to the step. He repeated this on every stair, but it only took two before the doctor observing told my nurse, “It looks just like steroid muscle weakness. His upper leg muscles are too weak to make it up the stairs so he is using his arms to compensate and that’s making him lean back so far. Joel made it up seven or eight steps and seemed to enjoy himself, he was not the crying, limp boy that had first sparked my concern, but still the lack of strength was dramatic enough for them to be concerned.
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My nurse told me she was pretty sure it could not be weakness from over-use of steroids because he had not been on steroids for about a year. She still suspected it was swelling from the radiation. We had radiated areas very close to the spinal cord and in areas that had been previously radiated. She was glad that the weakness was so obvious, specific and easily tested. She decided to put Joel on steroids for three days. (Steroids reduce swelling.) So, we began steroids yesterday. We will give them again today and tomorrow, we will continue to test Joel on the stairs. If, after three days on steroids, Joel can climb the stairs again, we will know that he is experiencing some type of radiation swelling. If the steroids don’t help, we’ll know to begin to widen the search for problems and solutions.
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We hate being on steroids. Joel gets angry, and fat, and has a voracious appetite that is hard to accommodate. I’m hopeful that three days won’t be enough to change much in Joel, but what if the steroids work? What if we have to stay on them? I know, it would be good to have a solution, but it would be sad to lose my sweet, funny boy behind the mask of rage and frustration that steroids create in him. It is possible we could get by on just avastin, a drug infusion we’ve been giving to prevent radiation necrosis. It’s on hold for now because the insurance has rejected it, but that is all being resolved as we speak. I’m hopeful that avastin will be enough and we won’t have to stay on the steroids, but the steroids are the easiest way to test the problem.
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You can be praying for extra patience for us, and for Joel’s mood to be unchanged by steroids. You can pray for the doctor’s to be able to fully understand what is happening in Joel that is causing this muscle weakness, and always, always you can pray for healing for Joel!
