Wrapping Up Cycle One

Two Weeks of Methotrexate and What's to Come

Ethan had a pretty great day yesterday. This week followed a similar layout to last week and hopefully we’ll have this luck on the back end of weeks four and five in each cycle. Both Methotrexate weeks had a hard Monday and even harder Tuesday, but pretty good Wednesday with improvement each day before starting over again on Monday.

Ethan out and about - with some of the cool memorabilia in the Kyle Rudolph End Zone.

Last Wednesday we were able to check out the Kyle Rudolph End Zone for the first time. It’s located on the main level of the hospital and was Ethan’s first trek during a hospital admission week out of his room. After eating some delicious dinner my parents brought, we headed down in a bit of a clunky manner…pushing a kid in his wheelchair while he’s attached to his IV pole is a little tricky, especially since Ethan was nervous we were going to get out of sync and hurt him where his port is accessed.

Earlier in the week Ethan had accidentally put his weight in his hand on his lines as he sat up, pulling hard (and painfully) on the needles going into his port. Shortly after, he used the bathroom and then first tripped on his lines (pull…ouch!), then dropped his sweatshirt on them (pull again!), then tried to pick up his sweatshirt and somehow a line slipped between his toes, got stuck and really pulled tight as he stood up. We about entered a full on meltdown at that moment from the sheer pain. Thankfully he was able to take some pain meds and try to relax.

Back to the End Zone…after we signed in (and washed our hands, read the rules, all the things…) I think we were a bit overwhelmed with how awesome it was! Ethan was most excited to play basketball again and we tried that to start, but it’s a little tough when you have a hard time standing and are hooked up to IV lines. He also swallowed a little bit of pride - a couple of months ago he was shooting hoops with ease. After starting with a regular size basketball we went down to the mini size…loss of strength during cancer and chemo is no joke.

After exploring, we decided the safe bet was to play a board game. Ethan picked out LIFE. I have no shame in saying that he came in 2nd and I won, ha. It was pure luck…I honestly had a hard time as my mind was elsewhere! We also got to play with two volunteers (Ethan was the only kid there at the time) so as we played (Ethan, my mom, me, Madeline, and Audrey - our game banker), my stepdad - being the best conversationalist in the group - chatted with the volunteers about who they are, what are they studying, where are they from, that kind of stuff. I could write a whole post just about how truly unbelievable the volunteers were. Sisters - U of M hockey players - honor students (now in graduate and med school) - amazing volunteers at the Children’s Hospital - and a billion other things. I saw Audrey is actually a nominee for the Hockey Humanitarian Award right now. I hope she wins, because from what I can tell she (and her sister) seem like pretty incredible humans.

Okay, back to Ethan’s week and jumping back to now. He knew he would want to go to the End Zone again this week since he was with Preston. He was able to spend more time exploring as well as playing Gran Turismo, pitching in the sports simulator, AND his favorite - playing Basketball. The key this week was using a lighter ball. This way he could still enjoy shooting hoops and get some natural movement of bending down to get the ball in as well. They were pretty exhausted after their visit, but Ethan had a blast.

Pretty proud of the LEGO Sundae he won in trivia.

Ethan had some other highlights this week too…he played trivia on Tuesday against the other kids (each from their hospital rooms) and he WON. Like he beat everyone else who was playing - live on ZTV (the in-hospital station). Preston said he knew most of the answers, but wouldn’t have even been able to tell Ethan them or he would have lost as it was not only scored by answering correctly, but also by who answers correctly the fastest. They called me right after Ethan won and were just buzzing…Preston said Ethan’s face turned into mine - locked in, dead zone, totally focused and competitive face. Ethan was in it to win it for sure! He answered one question incorrectly by selecting Rold Gold instead of Snyder’s…this reminds me I need to learn more about this trivia game so I am prepared to play next week! …from the sidelines of course. ;) He was given a super cool LEGO ice cream sundae for his prize.

So excited…calling to tell me all about winning the trivia game!

Ethan’s first place trivia score - so cool!

More on the fun side - he was able to spend time doing both art therapy and nature therapy. He drew some really cool thank you cards during art. One has a big bin of toxic waste drawn on it. Whoever gets that thank you in the mail is in for a treat and likely some confusion, ha! I actually have no idea what he did during nature therapy (typing this reminds me I need to ask!). Last week she talked a lot about cats and Ethan loved that.

Some of the thank you cards Ethan made during art therapy.

Since he was feeling pretty good, he actually had to do some real work. He journaled and also started to do some schoolwork (finally…for the first time since Christmas break…oof!). He was supposed to make some progress in IXL, but once in Ethan told Preston he started feeling “unwell” - that won’t fly with mom next week. ;)

Finally taking a little time to journal and work on handwriting.

He also spent some time with PT and they continued to make progress for where we need to be come surgery time. We are stuck in this zone of not too much and not too little. Ethan has visually lost about half of his right calf muscle, but we can’t work on building muscle (as they explained the most basic building of any muscle requires tiny tears and repairs and Ethan’s body cannot handle either the tear or the repair during chemo). At the same time, we also have to be careful to try and not let him lose more muscle than he has already lost. All while trying to get some flexibility back in the knee area that has become very tight from a combination of how Ethan holds his legs and lack of use.

On top of that, we’ve moved from being temporarily immobilized to knowing that the chemo is working and needing to get back to basics - the simple motion of walking. They talked about Ethan’s brain needing to remember natural motions like using stairs and putting one foot in front of the other. He’s been able to do some unsupported standing this week as well as a slow and steady walk. It’s likely he will decline next week just due to sheer exhaustion from the chemo, but we are feeling pretty good heading into surgery.

Speaking of surgery - here are some details that go with the title of this week - half way to surgery! Ethan’s leg surgery will happen after he completes the next 5 weeks of chemo (the second cycle). He’s scheduled for a big day on Monday, March 24…we start at 6:30 am! First we’ll have his whole body PET and CT at the University of MN Hospital, then we’ll head back to Masonic Children’s for an MRI of just the femur then to clinic for an exam and labs and then to Lion’s Hearing for another audiogram - whew!

We’ll meet with his surgeon on Friday of that week to find out what the plan is and what day they will operate. We can only speculate at this point because we cannot see what is going on inside his leg. We hope a lot more progress is made with this next round of chemo to give Ethan a procedure that is as minimally invasive as possible, but we truly won’t know anything until we meet with the surgeon on March 28.

I have a feeling this next month is going to be a sloth, but also fly. Besides going into cycle two, we have additional appointments with a Cancer Genetics Counselor and Researcher in clinic as well as supplying dna, past medical data and basically information on our whole past life for a research team at the U currently working on the relation of cancer diagnoses and if they can make a connection to genetics or environmental exposures. In a way that’s both unfortunate and fortunate, Ethan and I make quite the pair for cancer research, especially since he was diagnosed so soon after me…2.5 years is not typical from mother to son, especially at our ages and the doctors are just as curious as we are to see if there are any answers to be found.

In addition to those two separate workups, Ethan is also going to be part of an international pediatric cancer study and database. Many kids with cancer are asked to opt-in so it isn’t a super special thing, but I think it’s really cool. Besides his medical records and treatment, they will also complete a full background with extensive family history, past life details, environmental exposures, etc, and bring in left over pieces of his biopsies or specimen for testing. This information is used in a way that his specific cancer and genomic workup can be accessed and used by researchers from around the world that are trying to create not only better treatments, but also cure cancer (and at the same time pinpoint the triggers before it happens and prevent it). There’s a lot to swallow there, but there would be no progress without people willing to participate.

This could be a moment where a skeptic might say what the heck Aimee (I’m usually that skeptic), but besides being fascinated with research myself, I’ve also spent quite a bit weighing the pros and cons. While they could be using his information and specimens for some kind of monkey business…I’m pretty sure there isn’t a Wuhan situation going on…I think they are actually researchers fighting the good fight for childhood cancer. While it may also benefit Ethan in the future in ways of clinical trials, a real full and true cure, etc - the main question on a few of the Q and A’s is if people get paid. I thought that was funny, but I guess it makes sense since people make money off giving bone marrow and things. I liked the answer… No, BUT by giving your consent for research you are likely saving lives for your cancer type in future generations. That seems like a pretty great payment.

Ethan got a quick visit before leaving the hospital by my bff Katrina and her daughter Norah. He’s feeling so much love this week.

Okay, this is now actually way too long and all over the place, bah! And I didn’t even get to say the most important thing - THANK YOU. Thank you from the truest parts of our hearts for all the love and support shown to Ethan and our family these past few weeks. We appreciate every special message, card and well wish. Ethan had a blast today opening some really amazing gifts and we’ve been truly humbled by the generosity that just keeps on coming.

So excited opening gifts (he especially loved this one from Archie and his sisters)…and so funny to hear things always referred to as sick…when he’s sick.

Lastly, some pretty fantastic people from Ethan’s school have organized a spaghetti dinner benefit at St. Francis tomorrow and we can’t wait to attend. We initially thought Ethan and Preston might not be there, but Ethan got an all clear today to enjoy the weekend before we start chemo again next week. He’s so excited to see some of his friends and we look forward to being there as a whole family (it feels rare these days!) to catch up with those who can make it.

So see you tomorrow - or on the flip side of whenever I get the next post up!

Note: it seems I didn’t get this finished until today, which is now Friday, but I’m a little too tired to review and change anything regarding days so pretend it was sent yesterday, on Thursday. ;)