Well, it’s January, 2024. Two really big milestones. This marks exactly 2 years since Makayla’s diagnosis. Or it will be exactly on the 24th of January. And 2024 is the year we have been waiting for because this year Makayla will end treatment. There are still 5 more long months ahead. Long months. It is a tricky thing to even entertain the idea of an end in sight because then the road where you're standing starts looking uphill. Yet still as we passed through this holiday - the last Christmas with Makayla sick, we couldn’t help but quietly comment, “Can you imagine? Next Christmas Makayla won’t be sick…” to each other sometimes. So May 24th, I believe it is a Friday, of this year, 2024 Makayla will come to the end of her treatment. No more 6 pm chemo every night, no more once-a-month trips to Devos for sedation, lumbar puncture, and more chemo, oh and then start steroids for a week. NO MORE STEROIDS! Which sounds mundane to most people. And all of us have taken them at one time or another. But this dose, this type, her struggle … we will be so glad to see the end of these. Only 5 more times. Every month, every 3rd week, right as she starts to feel a little bit better - steroids. So we are very excited to welcome you in this new year.

My wonderful sister-in-law Krystle reminded me that it has been a very long time since I posted. Maybe no one reads these anymore, hard to blame them when it’s been like 7 months. But I will at least try to give a decent recap. (Thank you Google Calendar!)

The last post was on April 1. We did go on a small trip to Holland for Spring break. Makayla was of course on steroids and it wasn’t quite the relaxing trip. But we did make memories and the kids still talk about it sometimes so we must have done something right. The school year ended pretty well for everyone.

The first Saturday of Summer break, I checked on Makayla around 11 and found her with a fever. We spent I think 8 days at Devos. She was neutropenic - meaning she had no white cells to fight off any infection. It was a pretty scary trip. We have been so incredibly fortunate that we have not had many emergency trips to Devos. And this time around was tricky because besides her counts she felt ok but we were all so much more anxious about what it might mean. I think this was the first real-time the word remission was even thought of. But by the end of the week, she recovered and the doctors were not all that concerned.

We had another scare at the end of July. But a lot happened in the middle….

We had talked about Makayla going to a camp for kids with cancer. But instead, working with her doctors we were able to move steroids around to allow her to be steroid-free for both the 4th of July and camping!

The weekend of the 4th rolled around and we had plans to just stay home. We were going to rest and recharge after the last hospital stay and just chill. But the 4th fell on a Tuesday. So after a whole weekend of fun and relaxing we were on the couch Monday the 3rd talking about what to do the next three days. One comment led to another and in under 90 minutes we were on the road to Drummond Island! No one knew we were coming and we could only stay 72 hours. But it was perfect!! We had a wonderful trip and really enjoyed spending time with Grandma and Grandpa,  Aunt Carol, Uncle Dan, and fireworks with Aunt Katie and Aunt Denise! It was perfect! Great surprise trip and amazing memories!

We had a really good July. By the end of the month with everything packed and ready we were able to go camping again!!! All of us!! Just like we wanted and needed. Camping, food, water, sun, and sleeping out at Flat Rock Camp. It was really wonderful! And everyone had a great time. It’s hard to put into words how much being able to take this trip meant for us! It was so special being able to go after missing out last year. And baby Jace was awesome!

But…by the end of the week, Makayla was starting to get tired. So instead of extending the trip like we planned my mom and I brought the kids home. Matt stayed to do electrical work with my dad on this wonderful 100-year-old cabin my dad refurbished and restored.

So mom and I made the drive home, I took a shower, the kids spread out through the house and I ran to Walmart for some groceries. Came back home and was met at the door. Makayla didn’t feel good. Took her temperature and we were back at Devos. Exact same thing as the last trip. And seemed scarier. Was this something that was going to continue to keep happening? Did this now really signal the potential for relapse? These were all questions we were asking. But the doctors were wonderful and assured us they would work on the issue and that if they were worried they would tell us. It is a waiting game when your counts are low. No outward sign and what we discovered is you can wake up one morning and they are better. Which after 8 days they were! It was a nice stay though. With COVID restrictions lifted (at the time) we were able to walk the halls for the first time and met 2 other patients on the floor. It was really comforting talking to other moms! Also, on the last day it just worked out Matt was able to bring Kate and Eli up to the floor!! They have never been able to visit the floor before. We got Chinese food and chilled her in the hospital room watching a movie for a few hours until she was released that night! It was good for them to see where she stays and what it is really like for her.

After working with the doctors they determined that her body doesn’t process chemo very quickly and it was causing a build-up. This in turn caused her body to shut down. So, we have adjusted her dose and have not been back (besides monthly appointments) since.

This brought us right into the fall. Which by all accounts should have been easier. We have a routine, and a plan, and nothing new has been thrown at us. But I think in the routine we found a lot of things had built up over the busy, stressful, busy summer. We also had bouts of strep and COVID that knocked Makayla out a few times. Which compounded the problems.

All in all, it was just a bit hectic. I will say this: having a 13-year-old hormonal middle schooler who is also on chemotherapy, oh and on steroids every 3 weeks, is not for the faint of heart. She was just struggling hard! With everything a normal middle schooler does but on such an intense level. And she was trying so hard to cope and deal. But it was a lot. The two rounds of steroids Sept and November were really intense emotionally for her. We talked with the doctors and made some adjustments. Moving into December and this month it has been much better. She is able to enjoy her hobbies more and engage more often, which is so nice to see. She is just feeling more stable and that is such a comfort.

She is so so creative! She really enjoys crafting things with her hands, especially clay lately. The office has continued to morph from her rest/comfort area to a craft room. The desk is always covered in some type of clay and there are always little frogs eating maccarons, or mushrooms holding buttons, or dragons with marbles for eyes lying about somewhere. She also really enjoys music. And after an emotional mini battle, we allowed her to quit band (for a time hopefully) and take Choir full time. It would have been a bigger battle except she only has been in school about 40% so far with all her sicknesses, steroids, and appointments. Few things to note:

She volunteered for a solo in the Christmas concert! (we were so nervous she wouldn’t be able to as it was right at the end of steroids!) But she ended up in a duet (thank you thank you NC - you know who you are!) and did wonderfully! So proud of her, definitely some tears were shed in the audience, but in true teenager fashion had told me ahead of time “Don’t make a big deal about it afterwards ok!”

While she loves school and really wishes she could attend more often, we are focusing on what she can handle or has to do and right now Algebra is the priority. And for missing an immense amount already this girl is passing with flying colors! 93% on her last quiz!! And a big shout out to Mrs. Bunton for all of her help and support!! And to all the teachers at NBC who are so kind and understanding to a kid who so far is almost never in class. I promise you, if she felt better she wouldn’t have missed a day. 

She was able to sleep over at a friend's house and have a friend over this break! Both of which are super hard for her. Because her feel-good days are so limited. And often taken up with school, appointments, family stuff, ect, so that for it to line up that she felt good, she was free and so were her friends was awesome! One of the many things I know she is looking forward to this summer. Friend time!

We had a wonderful Christmas! A full week of family and food! So many games, Mario Kart, food, and laughing. Everyone was here and we got to spend a lot of quality time together! Makayla got a whole spa bath set from Santa, Eli a Nerf bow and football gloves, and Kate a snowcone machine. We did the string game (1 ball of yarn per kid, tie it to the TV stand, then unspool it all over the house - and I mean all over the house. Upstairs, downstairs, outside even! Oh, and a washer on each string so that each kid, moving their washer along their string, has to go all over the house until they find their hidden present. Best tradition!), gingerbread houses, family game time, and so much more. Oh and a lot of late nights!

This week is for getting back into real life, slowly. Lots of sleeping in, more friends, more Mario Kart, more cleaning, and maybe some time for hobbies. Or like today, an hour to write a much-needed update.

Looking ahead, Devos every month with steroids. Volleyball for Kate, soccer for Eli, and just doing all the same things we have been to continue to live and enjoy life. 

We are hoping for so much to change when we get to May. And there are so many things that need to change - to allow Makayla to be strong, safe, and normal again! But there are a few things that I hope don’t change. Things that have made us stronger as a family.

I have had a ton of anxiety about this idea that once Makayla is bette -r something terrible is just going to happen again. But a really good friend sent me this video- and I continue to hold onto this idea. That life never does get easier and that I shouldn’t expect it.  We just get better at handling hard. And from that perspective, I feel incredibly strong. Because this family has been handling hard for a while now, and I think we are really good at it. So while we are super optimistic about the future I hope we never lose the things that make us good at handling hard.

I can never sign off these updates without recognizing that Matt, I, Makayla, Kate, and  Eli, none of us would have made it this far without everyone who loves, supports, and takes care of us! We also know that God, while we have lots of questions and wonderings, is always watching over us. And we recognize the immense blessings we have had in our lives! We are thankful every day!

<3

Matt & Julie