“If you want to be happy, be.” … I ran across this quote the other day and my first though was, Madelyn. She obviously has been thrown a big speedbump here in this game we all call life. Somehow though, she has not missed a beat. Through all the pokes, Dr. visits to GR, different medicines etc. her beat goes on and she is a happy little girl. She’s always had an infectious personality and to this day, she still has that ‘it’ to make those around her smile and be… happy. (I’d love to say she got that from me, but…)
Back to ‘Delayed Intensification’. When this all started, about 3 days in. Dr. Mitchell sat Shannon, myself and my Dad down and went through the short term and more macro plan. Mitchell touched on all sorts of scary topics, big words and how she saw the next few years going. I was at best catching 50% of the conversation, my head was more worried about Madelyn being in surgery and getting the results on if cancer had spread into her spine/brain. This was the conversation though where we first heard the word ‘Delayed Intensification’ and we both recall her just saying something like, ‘we will talk more on this part down the road’. A few weeks later, we were back in Devos and our Resident Doc talked on Delayed Intensification. He was open how this would be most likely ne her hardest part (besides the 1st month) of all the treatments. The most chemo’s (8 different types total), new chemo’s, heavy steroids, trips to Devos etc. To put it simply, Delayed Intensification has been a scary word since this started and Mom and Dad have been really dreading this part.
Delayed Intensification started for us not long after our Florida trip. In FL, Shannon and I talked on what was coming up and just trying to get our minds back to a spot like the first month of this and get ready. (sorry for all families who probably didn’t get SB this year cause of our friend Covid).
‘DI’ was really broken down into two different 21-day treatment plans with a week in between. The first part started with steroids and a double thigh injection of chemo. The steroids were a double dose from the first month and to say it nicely, the leg injection (I think) has been Madelyn’s least favorite form of getting a chemo. Madelyn is quite the worrier and she was in full worry mode for probably 48 hrs. before this one. You might remember the steroids from the first month with extra eating, weight and just getting her to the point where getting up and down the stairs was a struggle.
The second part of DI was some form a special chemo pill that only was available out of California. Shannon spent quite a few hours on the phone sorting out the logistics of this one. The other new chemo for this part was one we did at our house in Traverse City. Madelyn would leave Devos still accessed and Shannon gave her the pushed chemo at home through her port. Shannon twice then had to de-access her at home and pulling the butterfly needle out. Madelyn hated being accessed at home. Not because it actually hurt, but it’s just unconformable and awkward with the tube hanging down to her bellybutton and tape all over.
We decided to do an update today as Madelyn has officially taken her last chemo pill from California and technically is now ‘off’ for 14 days before the next phase starts up. Even writing the above, I’m still amazed at this phase and all the things she had to go through. Our bribe of learning to swallow pills and her getting a Nintendo Switch handsomely paid off. For about 14 days in DI, she had ~7 pills both morning and night. We also didn’t know Covid would be part of DI and the Switch has come in handy for the full family!
So how has the last 45 days gone I’m sure you’re asking yourself by now… We quickly re-remember that the steroid is a powerful drug. Madelyn got her eating itch back and fast weight gain (only about 6 lbs. this time but still a huge %). Waking up at 3am and being wideawake was normal again. About a month ago, she started losing a lot of hair. We thought for sure it was finally coming out. Madelyn loved the idea to color her hair pink, so mom bought the permanent hair dye. What nobody told us is that as quickly as she was losing it, she could also go back to not losing it. She currently is very thin (she did get that from her dad) but loving and rocking the pink hair. At this point, it looks like a coinflip if she loses it all or not.
The first part of DI, Madelyn was tired and not feeling well but still more ups then downs. The 2nd part of DI, she’s felt quite good. Almost overly happy which mom and dad aren’t quite sure how that’s possible, but we’ll take it. Like most of you with Covid and the stay at home orders. We spend every second at home. Even with some colder weather, we make the kids everyday get outside at some point. Even with all of the above, Parker has a hard time keeping up with Madelyn. We were fully expecting DI to drain her and zap all of her energy. Take away the first few weeks, she currently seems to be 100% a go.
All in all, we were quite worried going into this phase. Had our heads back to the first month and assumed that would be new normal. It hasn’t been easy by any stretch. Writing this made realize I forgot how much she really took in DI, how much her body has been through and all the trips to Devos. The Doctors told us early on kids our tougher and more resilient then you think they are. Once again, they were right.
Stay safe out there with this crazy new normal and hoping to see everyone soon!
Madelyn’s Journey with ALL 