I’ve now had several weeks off of work and its been on my list to do a blog all break. What can I say, I’m a very good procrastinator… I actually started a blog on my first flight after we found all of this out, but only made it a few paragraphs in. That blog was/is my view starting from the beginning of Madelyn’s fight. I’ll get back to that one eventually, but for now I wanted to give an update about the Holidays and how Madelyn is doing.
The last week of school before Christmas break officially started, didn’t go exactly as planned for us. Nothing urgent, but she only ended up making a few ½ days. Going into the week she was on track to do her first full week of school but the main med after her steroid reared its ugly head. This med we only saw one real side effect and it was nausea. It only last for about 10 days but most mornings in this stretch she’d wake up and feel not bad, but then the nauseous feeling would kick in and she’d have a 45-60 min rough go. As the days of this week went on we got better helping her through it but this kept her out of school most mornings. She also in this stretch got her first fever towards the latter part of the week. 101 is our cutoff before we have to call Devos. She maybe got up to a little over 100 deg, but with most the school fighting through the first round of sickness we figured it was best to keep her home. The fever probably scared mom and dad more as she never looked or felt sick.
By Christmas time the nausea had gotten better for Madelyn. She was starting to move and play like normal, and her bubbly personality was back. A lot of people got to see her for the first time over the last few weeks and I think a lot were quite surprised how ‘normal’ she is right now. For most of the day I can’t lie, she has been her old self in every way. Riding her bike fast again, running up the stairs, climbing in bed in the morning and jumping on dad, doing yoga with mom… Right now though the only part of the day which isn’t ‘normal’ is when she has to take her med’s. We’re now about 65 days into this whole journey and I’d say around day 50, taking med’s became a battle. Most med sessions we could crush up the pills, get her to take her bite of chocolate pudding, have cheese puffs and milk in waiting and life would move along. We now can’t seem to find a combination of anything that she likes. She knows its coming each night and the moment when the words ‘hey Madelyn, its time to take your meds…’ happens, she gives you that look and breaks into tears. It’s definitely a hard part of the day, but once she does get through it she goes back to ‘normal’ we usually end of night happy and with a game or two of cards.
Back to Christmas… Her Santa wish list this year was a foot spa and a bath bomb maker. Luckily Santa was able to find both and she truly had a great Christmas morning. Dad even tried the foot spa with her and with a few salts in the water it was quite delightful 😊. We have stayed very busy over the break and I think for Madelyn (and I know mom and dad), it was just a great time to be active and really have a normal holiday. I use the word ‘normal’ a lot right now as that and to stay ‘on-track’ is our goal with each and every step.
December 23rd we did a trip to Devos for her weekly treatments. This one was unique for Dad as I was the one who had to take her to get accessed and treated. Mom was fighting through a cough and cold. Madelyn wasn’t happy with the situation, but her and I made it through. Getting the port accessed doesn’t hurt at all thanks to lidocaine, but man it sure is scary. The nurse beforehand gave me 3 jobs. Be very still and do not move, do not touch the area and don’t cough on the clean part. I did all 3 but I have to admit, its just plan scary for her and parent. After we got accessed we waited for the blood results (all good) and then it was off for her spinal tap. The spinal tap is interesting to me. When that is all they are doing, she is only out for about 5 mins. Seems easy enough, right. But, each time I’m asked to sign a consent form, watch 5-6, doctors, nurses, specialist come into the room ‘just’ for a 5 min procedure. They always let us give her a quick kiss goodbye, without fail I can’t do it without getting quite choked up.
All in all she and our family had good break. Everyone got a cough and sniffle at some point which I assume a lot of families out there had. Madelyn even got a double ear infection towards the end of break. Only the first night she woke up with any pain so that was the good news… Adding that doctor visit though into the same day where she was supposed to get blood drawn up here in TC for the first time was a long and rough day. We made it through but easily our hardest day since coming home and this all started. That 24 hrs. deserves a post on its own as it was just one of those days! Towards the end mom and dad were even hoping for a quick happy hour to end the day. After the double shot into her thighs though it was time to come home and snuggle up and watch a movie.
As much as we love her and Parker, this morning we were sure ready to get them back to school 😊
Madelyn’s Journey with ALL 