Author: bradneil9

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.

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 1^st 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!

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“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 1^st 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 2^nd 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!

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 😊