Today was Noah’s monthly trip to the hospital for his blood work. Because the medication he’s on for his localized scleroderma is powerful and has the potential for side effects, his blood has to be monitored. The hope when we began a year and a half ago was that there would be enough margin of safety in the results that he could eventually dial back the frequency to every few months, but unfortunately his results have been consistently borderline (on the safe side of the line, thankfully) that we’ve had to keep the frequency high.
Anyway, we’ve got it down to a routine. This keeps it predictable for him and gives him an air of control, and even somewhat special (he’s the only one of our kids allowed to play with my phone, and only when at the hospital; he gets a milkshake, stickers, etc., and his brothers are jealous – little things that are a big deal for a six year old). So today we walk in to the needle room and an older teen was on one of the couches getting prepped to have blood work done. He saw Noah and said something to the effect, ‘oh man, that little guy is going to be crying.’
Three of the four nurses immediately responded with comments like, ‘Him? No way, he’s the best at this.’ ‘Noah’s a tough guy, he never cries.’ ‘He always does better than everyone.’ I’m not sure, but I thought I saw Noah get a bit of a swagger on his way to his couch.
I was grateful for how they all pumped Noah up.
I was also sad that he’s there so often that in a hospital that treats people from the world over, and in the blood work lab where there is always a massive line of people and I can’t fathom how many they see in just one day, that most of the nurses know him and remember him.
Matthew McNutt 
Son of a nurse and husband of a scleroderma patient. A good nurse treats every patient as unique and they know their regulars. The special ones, like young men who bear it all bravely, get a special place in their hearts. It takes a big heart to be a good nurse.
I'll keep Noah in my prayers. We've lived with scleroderma for almost 20 years in our house. Sounds like my lady wife's is slightly different than Noah's but she's on long term meds and regular check ups too. In fact, she's off getting her blood work done this morning!
I'll keep you and the rest of your family in my prayers as well. I know how hard it is to be on the other side of the process too.
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Thanks, Jay! I appreciate it. We'll be praying for you and your family as well. It's not easy!
We've only had Noah diagnosed for a couple years now; before that we went a year or so trying to figure out what was going on. Thankfully he has localized scleroderma, not systemic (which took my grandma four or five years ago).
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Yeah, Donna has systemic. Her meds have "stopped" the disease rather than "cured" it. But we'll take stopped.
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Yeah, I can't wait for the day they find an actual cure. I'm glad they've halted it; with my grandmother it hit her too hard and too fast in her old age – and it was identified too late to do much about it.
We're still trying to get to the level of medication to halt Noah's progression; unfortunately, we've hit a wall where he needs a higher dose, but anything more than what he's getting is over the danger line for his liver.
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