Many daily ups and downs for us in life since our last post but overall mostly a positive trajectory.  Most recently we have made some good progress on changing up Brady’s anti-seizure medications.

Unfortunately, March served up the worst round of chemo yet as we couldn’t seem to help Brady stop vomiting despite all our tricks, meds and efforts.  We think he became severely dehydrated and after a few days we were able to arrange for a remote nurse home visit to provide IV fluids which did help him turn a corner.  We are hopeful this will not repeat on the next round as we have some new antinausea medications available now.  Also, we finally connected with a helpful adult oncologist here in Bend who agreed to provide “supportive care” even though technically they don’t treat pediatrics here in the Bend cancer center.  This means Brady can get regular infusions for hydration (and additional antiemetics if needed) during his future rounds of chemo. 

Mid April, Brady experienced quite a bit of dizziness, double vision and difficulty walking for a few mornings in a row.  The neuro team at OHSU reviewed his medications and proposed a possible toxicity (overdose) in his blood, most likely from one of his three anti-seizure meds (the one that he’s been taking since August).  After 4 days in a row of these frightening episodes, we took a gamble and reduced the dose (as a test of sorts).  After two doses he did in fact seem back to baseline.

A week later, we headed to OHSU for a number of tests, clinic appointments and a follow-up discussion with his care team.  It was a busy couple of days with an eye exam and EKG to make sure his inhibitor is not affecting vision or heart, his quarterly MRI, an oncology appointment to discuss all the results and an appointment with head of the neurology team to review and make a new plan around seizure medications.  All the results were favorable and the tumor remains stable which obviously brought a sigh of relief.

Throughout this journey we have had opportunities to connect with many other parents and cancer supporters.  Recently, we had the pleasure of meeting an incredible family that is responsible for many of the philanthropic efforts at Seattle Children’s’ and OHSU Doernbecher Hospitals.  The Sam Day Foundation is operated by the Day family in honor of their son Sam and many other children fighting cancer.  Lorna lost Sam to Ewing Sarcoma in 2016 and has graciously offered to run as a sponsor for Brayden this year.  It’s a Buddy Run style fundraiser happening on Saturday, May 18th near the main OHSU campus.  All the proceeds raised in Brady’s name will go directly to Seattle Children’s Hospital Brainchild-04 Car-T study.  This is currently the only clinical trial in the US that Brady qualifies for (if his tumor recurs) and for many of the children already enrolled, this trial is likely their only hope for survival.  If you are able, please consider making a donation and see further information here:

https://givebutter.com/2024buddyrun/lornaandbrady

If you are in Portland you can also show up in person and cheer on the runners.

Brady was scheduled to start his next chemo cycle immediately after our Portland trip, but his platelets have had a tougher time recovering this cycle.  It is now almost 8 weeks and they still have not recovered so we will need to delay his next cycle.  This is possibly a fortunate turn of events as Brady gets a welcome bit of a break from the chemo and we also have an opportunity to go to Hawaii, which is our most exciting news!   Our dear friends offered us a free place to stay in Kona and we have decided to take the kids out of school for the week and get some R&R.  My sister-in-law shared some air miles with us and we were also provided a grant that covered the additional tickets.  We feel blessed and VERY excited to get some warm sunshine and ride the waves together.  We did pay a bit extra for refundable tickets (in case something goes sideways) but so far things are looking like a go, all perfectly (miraculously?) timed in between appointments and chemo cycles.  We are hoping and praying Brady has no seizures and remains stable while we travel.

Thank you again for your continued love and support.