As expected, Mom and Dad have struggled to keep up with blogging… From time to time, we like to ask each other ‘are you going to update Madelyn’s blog?’, but that’s usually the extent of the exercise.  With that said, we apologize for the gap in any updates.  The good news is that Madelyn has been continuing to rock ‘Maintenance’ and be a normal 7-year-old 2^ndgrader.  (I just looked back and realized I started this blog the same as the last one)

Maintenance – this is the phase of the treatment that Madelyn is still in and will be until early January 2022 (‘the end’, knock on wood).  She continues to take daily pills throughout the week and ~ every 3 months Maintenance restarts.  We just had our second to last restart of Maintenance and this was a big one for us.  Not only does it mean she has 1 more restart (obviously cool on its own), but the next one is also when she will have her last spinal tap, last week on steroids and she will get her port removed! The port has been such a big part of this journey and openly mom/dad and Madelyn have mixed feelings on it coming out.  The biggest hesitation and what we all agree on is no more port = arm pokes.  Currently getting her port accessed has become a nonevent for Madelyn.  Getting the arm poke on the other hand is a big event and one none of us are looking forward to this again.  We have prepped Madelyn that ‘it’s coming’, but we know it will be an unpleasant event when it happens. Once her port is out and we are “done” she will continue to take bacterium for 3 months to prevent pneumonia while her immune system recovers from the last 2+ years of chemo. She will have a checkup once a month that include the arm poke for drawing blood and a physical exam. With that said, Madelyn has overcome so much since this started and I’m certain she will check off the list soon that arm pokes are no big deal.

…….(so I started this on 9/7 and its now 9/14)….. Its normal for Madelyn to need her numbers checked after a Maintenance restart if her med’s changed at all.  This was the case Monday 9/13, and I took her into Munson at 7am.  Our hope was to get blood taken and for her to get to school on time.  Dad screwed up off the bat and went to the main entrance and not the lab entrance.  Yes back 1 year ago with Covid I was correct, but apparently that changed and I missed the memo.  This didn’t help with getting to school on time.  We finally got checked in, finally got the finger poke to give enough blood and only 10 mins late to school.  As drop off has always been a nervous time for Madelyn, getting to school ‘late’ was not a good way for her first Monday.  This is one of those events that really takes Shannon and I back.  Yes, she had a great day at school and recovered.  But seeing something so hard on her yet it has just become normal really makes you think about all she’s going through.  One of those moments that just brings you back……… 

Back to my blog.  Summer has been very eventful and honestly just busy and too short like everyone else’s.  We did a lot of swimming, boated, traveled, swam a bunch more, found a lot of Petoskey stones, biked, went to weddings, camped, birthday parties, hosted family, and friends etc.  Both kids are at that age now where it’s not quite as much work on mom and dad and just makes all the activates easier and probably more fun for all.  With the medicine, sunburns can be an issue for Madelyn.  Luckily, she is the best sun tanner in the family and somehow will still have tan lines when Spring Break rolls around.  All in all, it was a great summer and both kids and mom / dad were ready to get school going this year.

The kids this year for school switched to the Catholic school in Traverse City.  As you can tell through the blogs, change and anything new usually makes for some nervous moments for Madelyn.  First thing she had to wrap her head around was wearing a uniform to school every day.  To our (major) surprise, she took it in stride.  Our Catholic school also starts at 7:50 which is quite a bit earlier than her last school.  Good thing for us that Madelyn really seems to like getting up early.  Parker isn’t quite as fast in the morning, but he only needs a few more minutes than Madelyn to get his day started.  So far so good with the new school and were looking forward to seeing both our 2^nd grader and Kindergartener grow throughout the year.  

We now have our sights set on November 22^nd.  This is currently the date for her last restart of Maintenance and the port coming out.  A lot of milestones along the way.  Getting the port put in was such a big day for us and so early in the process.  In a strange way getting it out is going to be oddly bittersweet, but we also know it’s a big milestone and truly means the end is in sight. 

As always we apologies for the lengthy gap in blogs and we thank everyone for the love and support.