We did another thing that I didn't think we would have a chance to do again....

We made it up to Seattle Children's for a MRI and to meet with our oncology team. 

When everything changed in February, it really felt like I wouldn't have the chance to see the team again, at least not with Max at my side. But we made it up there and so I will try and condense everything down here.

I wasn't sure if I hoped for a dismal MRI that explained Max's downturn or a stable MRI that leaves me wondering why everything has changed. I actually kind of got both. 

First, Max was so incredibly brave getting prepped for the MRI. Since he no longer has a port, Max needs an IV for contrast during the MRI. We also pull labs at that time. Getting labs without any IV has been going smoothly so I was hopeful but it is pretty well known Max is a tough poke. The nurse had been prepped by another nurse who has done his IV's before. They had the ultrasound ready and even the anesthesiologist on standby. Well many nurses, ultrasounds, 2 anesthesiologists, 1.5 hours and SO many pokes later.....he finally had an IV. But it looked like he had been through a war. We even tried his foot (pictured) which has worked in the past. We literally used up all the J-tips (numbing spray) on the floor. I HATED seeing him in pain. And the whole process wiped him out. But the great news is the pics from the MRI were very clear because he completely fell asleep after all of that.

Initial reads that day were that his primary tumor and the newer lesion look mostly stable. It was shocking to hear the words "Max" and "stable" after everything he has been through over the last 3 months. However upon further read by radiology and the team, another new area has been noted. We aren't calling it a lesion (new tumor growth) but we also aren't exactly sure what it is. It could be necrosis because chemo is doing it's job. It could be necrosis because the tumor is trying to grow. It could be new growth. Whatever it is, it is in a location responsible for coordinated movement and consciousness (globus pallidus). So what this does give us is an explaination of why Max has had such a significant loss in his remaining movement and has so many periods where he is either asleep or not communicative. 

Unfortunately this is just part of the decline and not something we can fix like most things at this point. So the discussion then turns to what little tweaks can we make so that Max can enjoy life as much as possible while he is here. Our small changes include:

-an echo in 4 weeks to see if his heart is strong enough to bring back one of his targeted chemo drugs (Mekinist)

-shots to try and relax some arms muscles that are contracting and pulling his arm

-an ambulatory EEG to determine if there is underlying seizure activity we are missing

-updating his glasses prescription 

-considering additional drugs to help "perk" him up and give him more periods of wakefulness

-meeting with nutrition to make sure his caloric intake matches his new weight (he has lost 20 lbs since February, almost 50lbs total since last fall when eating became more difficult)

It's a lot. And a lot of thought has gone into if each thing we are doing will improve his life or just put him through unnecessary testing. We will group appts over a series of days in Seattle every 4 weeks so that Max can rest in between and hopefully be awake enough to visit with the team. This last time after the IV debacle, he slept for 4 hours in clinic before we drove home. He didn't even get to share his spring themed jokes he had prepared!!

So that is where we are. Still day by day. Still keeping Max's quality of life as the north on our compass. 

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The picture along with today's update is from a few weeks ago during the Sam Day Foundation Buddy Run.  Max was a "buddy" and connected to a runner who raised money for pediatric cancer research in his honor.  I was able to run the 12 miles along with the runners from OHSU Doernbecher Children's Hospital to Terra Linda Park near our house.  I was so thankful to see Max, Liam and Glenn at the finish line.


-Katy, Maximus & Family