I have spent most of the past month questioning if we are doing the right thing.  Throughout Max's cancer journey, the treatment path always seemed pretty clear until these last few months.  We started the new mild chemo (etoposide) and he hasn't really had any side effects other than losing the majority of his hair.  So his poor hair that was brown on the end, then white from chemo then slowly growing out brown started coming out in handfuls.  Recently Max had taken a lot of pride in his wild hair and sideburns.  So when it started falling out, I really considered halting the chemo all together.  But I ultimately gave him the choice.  The oncologists and nurses said they typically see a thinning versus full loss so we are hoping the last little bit of hair hanging on can make it through this next round of chemo.  All that is left is a little tuft on top so the team at Seattle Children's is calling it "The Cockatiel"!

On day 10 of chemo we drove to Washington to meet his oncologist virtually (we must be on the soil of the same state our doctor is in due to licensing/insurance rules).  On our way back as we were coming through the bridges in Portland, Max had a seizure in the car.  He began to throw up and was slipping down in his wheelchair as the one he has is not supportive enough any longer.  It seemed like forever before I could safely get off the bridge to pull over and clear his mouth and make sure he was ok.  

After the seizure we met with neuro (who makes decisions about anti-seizure medications) and elected to increase his doses.  After doing so, Max began to have more difficulty speaking and seemed less alert.  He would go days without barely saying a word.  So we met again with neuro and decided that for Max's quality of life, it was better to reduce down one of the meds in the hopes it would help him communicate better.  Though it does pose a small risk of seizures coming through, we all decided that was worth if it meant Max could enjoy life more.  We know how to safely deal with the seizures so it feels like the right choice.

After completing 21 days of chemo, Max was scheduled for 7 days off then a series of blood tests and restarting.  I asked for an additional week off because despite lowering Max's anti-seizure med, it was hard to tell where is baseline was anymore.  Max goes in such waves with cognitive and speech ability throughout the day that oncology thinks he is having more subclinical seizures than we realize because that is not typical for tumor growth.  And it is hard for me to tell of the chemo is doing much besides loosing his hair.  I felt like another week off of chemo would help me sort out what is the best way to proceed.

During the extra week off, Max's speech continued to decline and I felt like it was a sign to go ahead and move forward with the etoposide (chemo).  So we began our next round this week and are praying his hair stays put.  I am still continuing to push to get his new wheelchair approved and built.  After his seizure in the car, the wheelchair company NuMotion (who built his last chair) offered to loan him one that is more supportive and like the chair we are trying to get approved.  It has additional belts, support and reclines so now I can keep him safe in the car when we go to doctor's appoints.

So next up is just staying the course of chemo, working on getting his wheelchair approved by insurance and then he has a tentative MRI towards the end of May.  We would really like to go up to Seattle Children's (from our home in Portland) but I am not sure if Max is strong enough.  I know he would really like to see the team so I hope we can make it in person versus virtually.

Thank you for all your support and continued prayers.


-Katy, Max & Family

P.S. Picture is of Max outside of OHSU Doernbecher Children's Hospital after his bloodwork.  He loves the metal statue of the dog outside of the entrance and always stops to pet it!