february 7

Last day of radiation! Here’s Jordan ringing the bell, with a daring and just-in-time save by filmmaker Lou when Jordan celebrates a little too fully.

ringing the bell!

After he got home, I took the radiation mask out to the garage to compare it with the one from 2014, and they’re kind of different!

2022 photons on the left, 2014 protons on the right

He wrapped up his first round of chemotherapy on January 29, which has loosened up our evenings a little. We’re really looking forward to getting back to a more normal schedule now that radiation is over!

As radiation has gone on, Jordan’s symptoms have gotten worse from my last post, but mostly in terms of fatigue. About two weeks ago they increased the dosage of his steroids by adding an early-afternoon pill to try and reduce the swelling symptoms. The increased dose did provide some relief, but it quickly faded. It’s also increased his side effects and he’s suffering from some mood imbalances, brain fog, and swollen ankles.

At our last check in visits on Thursday, the oncologists wanted to try a round of Avastin treatment to address the swelling (you may recognize the drug name, it’s the same infusion treatment he underwent over the summer). This will address the swelling more aggressively and allow him to start to taper off the steroids. His first treatment is on Thursday, and we’ll start to cut back the steroids that day.

They have also moved up the next MRI date to Feb. 24 (previously scheduled for March 7) with reading appointments on the 27th (radiation oncology) and 28th (neuro-oncology). While we expect there will still be some swelling on the scan, they want to see what is causing all these symptoms – radiation effects, or tumor growth. From there, they will determine if he will continue the same chemotherapy drug for the rest of the year, or if they will try a different medication.

We’ve also managed to get a few quality of life updates for Jordan in the last couple of weeks – home health and hearing aids!

Home health is coming for his physical therapy (twice a week for now), occupational therapy (twice a week for now), and speech therapy (once a week). They will be teaching Jordan the skills he needs to get back some of the ability he’s lost, including: taking care of himself, rebuilding lost muscle connections, memory skills, etc.

The hearing aids have made a big difference in the week that he’s had them. He’s still getting used to them (it typically takes about two weeks for your brain to adjust), and they have a background noise-suppression AI that should be constantly improving his auditory experience. He still has a lot of moments of overwhelm throughout the day as his brain is relearning how to pick sounds apart (eg: voices in person vs. on TV, voices vs. ambient noise). Overall, however, he’s already able to hear the tv, music, and conversation much better than he was previously.

Now that we have a less rigidity in the schedule, more of you may be able to pop in to visit or to help out – especially those of you who only have evening availability (we’ve missed you!). To see what days we can accommodate visits, please take a look at our lotsa calendar. I’m asking people to coordinate in the comments on the tasks, and there are plenty of days where we can probably handle more than one visitor.

As you can see in the below photos from the last few weeks, Jordan loves picnics, cultural outings, getting pampered, and long walks on the beach. Sign up to take him on an adventure!

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ways to help

Thank you for any help you can provide.

In Person Help

We’ve created a community on the platform Lotsa Helping Hands. You can setup an account and request access using the link below.

Help From Afar

Gift Cards

We find ourselves using the following the most right now:

  • DoorDash
  • Amazon
  • Costco

You can send all digital gift cards to katiepickle@gmail.com.

Amazon Wish List

I’ve setup an Amazon Wish List for items we find ourselves needing to keep Jordan safe and comfortable. New things added all the time!