When this all started, both Shannon and I admitted that ‘blogging’ really isn’t our thing. Keeping up with the blog early on was easy, there was no shortage of Leukemia topics to update everyone on. We’re blessed for the moment that Madelyn’s Maintenance phase has slowed this all down and made things normal again. She continues to go to school, grow hair, do gymnastics and really do all the things a 7 year old should be doing.
Shannon uses an app called TimeHop. It shows you what pictures you took 1, 2, 4 and even 10 years ago. We’ve always liked the app especially when our kids are young and just to see how much they change year to year. The app even shows me from time to time that I was once 15 LB’s lighter and really did have a full head a hair. TimeHop this year though over the last few months was really a time of reflection for Shannon and I. Going back to when this started, how we once sat in the hospital and really lived our lives hour by hour and then we got to day by day. For us it’s one of those feelings that feels soooo long ago, but also in a weird way like it was yesterday. When Timehop really threw us for a loop was when Madelyn gained all of her weight ~1 month into all of this (November, 2020). Seeing a picture on a Monday when she looked normal, and then the next Mondayshe had gained 8-9+ pounds was hard to believe, hard to see. Watching a video during her physically hardest times where getting up the stairs was, almost not doable. Its all part of the journey, but it sure took us back.
Good news today though is that Maintenance is still going very well for Madelyn. She takes oral chemo every day, but only does IV chemo and steroids at beginning of the 3 month rotation. We restarted her 3 month cycle on Dec 22 and Mom and Dad were quite nervous the med’s would make it a down Christmas. Her first time starting Maintenance we definitely noticed the med’s several days out and she didn’t feel good. This time around, not so much and she felt well throughout. Maybe it was all the excitement of Santa coming, who knows. Or maybe she’s just a very tough little cookie as she keeps going through this.
It took sometime in Maintenance, but Madelyn now does great with getting her port accessed and de-accessed. Still not super easy, but she has figured it out and gets through them without hardly any tears anymore. Mom and dad tried any and every trick we could find to help this part get easier, who knows what really clicked in her but we will take it. In a weird way, Madelyn is not excited to get the port out in early 2022 as she’d rather get accessed via port and not the arm pokes. Arm pokes will be a tough one for her!
Madelyn has now been back in school since last year and school as been going without issues. She hates drop-off to start the day, but when Shannon picks her up every day she’s happy and loves to tell us about her day. I didn’t realize by 1st grade the level of math and reading kids are doing these days. If you see me wearing a rainbow / girl colored neckless, this has to do with Madelyn and her anxiety over drop-off’s. I think this came from her Aunt Melissa, but we all wear the same neckless and this brings her comfort. Mom just told Madelyn that this will come to an end at some point, but for now I rock mine daily. I would honestly guess that on 20 Teams calls I’ve had the question, ‘hey Brad, where you get that neckless’!
Skiing has been a big hit for us this winter. Both kids are now to the point where we all ski together, and mom and dad aren’t just snowplowing down the hills. Madelyn did her first ‘blacks’ this year and that has been quite exciting. Its crazy how kids go from skiing maybe 60 minutes and are done, to where she can now ski most of the day. Parker is somewhere in between how long he holds interest. Only thing we need up here this winter is a little more snow, been a bit slow on the accumulation.
Sorry its taken so long on an update!
Madelyn’s Journey with ALL 