A Reminder to Never Give Up

Age 12, fallen off the charts for height.

In 2011 I started talking about our concerns with our son’s growth with his pediatrician and kidney team. He was a tiny little guy because ARPKD had done it’s damage, specifically during the ages of zero to eight. It was at age eight, when he was on dialysis before transplant that he weighed 43 pounds, probably the weight of an average four-year-old. Then he was suicidal. Then he was hospitalized and stabilized. Then we started middle school. Then life. Then crisis. Then life again. It didn’t help in the middle of our concerns, we changed pediatricians, which turned out to be a six month process. 

In early 2012 when we were settled with our new ped, I set an appointment specifically to talk about our son’s overall health and scheduled an hour-long visit (I know! He’s amazing.) At the base of those concerns were his nutrition and growth mixed in with a bunch of other issues, much more boring than nutrition and growth. He was 14 and small, weighing under a hundred pounds and around 4’8″ with a growing sister taller than he. Our ped sent us to get a bone age on our son because around age 16 growth is usually done and the chance for medical intervention is not available. When we were referred to an experienced endocrinologist, which took weeks to get into see, we brought x-rays proving he was 14 and had 11-year-old sized bones and body.

The doctor explained our son would likely be around 5’3 to 5’4 instead of the 6′ tall body the doctor said he “should” have given his birth height and familial heights. Six feet. He’d have to grow a foot plus 2 inches and there was no way that was going to happen without medical intervention, if that could help at all. For the first eight months the doctor tried him on thyroid medicine for a minor issue to see if we could “jump-start” his growth. After eight months with the additional med, they could barely detect any change at all. Dr. Endo even consulted with the top doctor in the field of the kids’ disease and one who knows our kids’ cases personally to discuss the observations that didn’t line up. We also learned our son’s case wasn’t usual and therefore the doctor wasn’t sure medical intervention would even help. All of the numbers and our son’s complicated medical situation pointed to: “It makes no sense that growth hormone will work on him, so let’s skip it.” 

As I was discussing lab results with the doctor on the phone he mentioned he was considering to wait another three to six months to see if by chance his body would respond to adolescence. My response to our conversation went something like this:

“Dr. Endo, are you sure we have to do wait? He has been waiting to grow for months. Months to wait for an appointment and then months with you waiting and months before that when we started, so there has been a lot of waiting. He’s watched classmates and his younger sister grow beyond him. I don’t want him to wait anymore. Even if you think it possibly could, just-a-little-bit work, I want to try growth hormone. I feel like he has enough issues against him as he matures and what if him being short doesn’t have to one of them? We should all want to help make any part of his life easier. Both you and I should want to help him.” 

It was with that conversation that went back and forth on the pros and cons and our incredible doctor – who won me forever by giving me his cell phone number telling me I could text him – and we moved forward. Amazingly enough, our insurance approved the shots (and expensive drug to the tune of $1800/month) immediately. It’s been a hard road of shots with him. He didn’t want to have the shots and I had to really push strongly. There were tears from both of us. He said he didn’t mind being short forever. There was me saying, “Sometimes we have to do things for you that you don’t understand when you’re 14 and we have to push, both doctors and you, but this is best for you. You won’t appreciate growing right now or being taller because it doesn’t impact you in any tangible ways, but I promise, when you’re 20 you’ll thank me.”  He was not convinced.

Yesterday we went to a follow-up with a new endocrinologist (our lovely one retired, sigh) and our son grew 9 1/2 inches in less than 18 months. We’re hoping we have another year left before it’s too late and hoping to get him closer to 5’11” or six feet. He is happy he did it, even if annoyed by the need for it and the treatment to do it.

We did it. It was a long haul but one that we can see with our own eyes in how advocacy works. There are many things we do that aren’t as tangible, and sometimes it’s hard to keep going. To keep fighting. It’s hard to make the calls, fight the insurance, go through the steps because you have to, to get to the end goal, but many times our fighting and persistence makes all the difference. It’s easy to forget that when your hard work for your kid cannot be measured on a wall in feet and inches.

I cried a little bit out of the range of the doctors and nurses and in the car, our son said, “What’s wrong?,” with my only reply being, “Nothing is wrong, something is right. Sometimes we cry for good things. I’m happy that this was something we could change for you that will have a big impact later.” 

“I was okay with being short you know,” he says, with a sly grin, obviously kidding. I know, as well as most people who know my son, that this was his way to thank you.

I just wanted to remind you that what you’re doing – even when it can’t be measured – matters. Keep doing it, keep going.