Late summer update (Part 4)

Barry is not doing well.
I put off writing this update because it meant putting a lens to what is really going on, and I am just too scared to face it. To catch everyone up, my beloved husband Barry had a kiwi sized tumor removed during emergency surgery from his occipital lobe in March of 2024. It was glioblastoma, an uncurable and lethal cancer that moves swiftly and unpredictably. In April of this year, Barry had a second resection to remove aggressive cancer regrowth that took out a great deal of his occipital lobe. That surgery was much more brutal than his first in March of 2024. The April 2026 surgery took away his ability to read, took away a lot of his logic processing, and took away his strength. Every day, every week, I hoped that the hours of sleep would be restorative, but instead every day he lost more than he gained. He never really recovered. After surgery he started infusions of avastin every other week, and lomustine, and now carboplatin, every four weeks.

Barry is ebbing away
A new tumor is manifesting in the Broca's area of his brain, and he cannot communicate, he cannot express himself, and the thoughts that he has are a jumble. There are moments where "Barry," as we know him, is looped in and can express himself, but in a short time, he swings out of orbit and it is like talking to a sleepwalker. Barry is prone to panic and, while he still can walk, he is unstable and needs help in the restroom. Someone needs to be with him at all times. He has also lost a considerable amount of weight, over 50 pounds, yet it is very hard to get him to eat. He is beyond exhausted. Barry has had ten more radiation sessions to shrink this tumor, and they warned us that "it gets worse before it gets better," but we won't know how effective this was until his MRI on September 21.

But what about clinical trials?
Since Barry was diagnosed, we have lobbied to get him into trials. Once you have had one trial, or have had any sort of intervention like lomustine, you are excluded. Or, you might get in one and get a placebo. Choose wisely. Trials are in phases and the doses in early phase stages are not meant to be curative. They are there to determine toxicity and dosing. If a patient is lucky enough to get cherry picked into a Phase 3, they would need to relocate to that city to meet the study criteria. We are lucky that we are in Chicago with both Rush MD Anderson and Northwestern looking at Barry, but the clinical trials here are either "before surgery happens" or, in the case of NWM, wildly risky. While news of vaccines and therapies are exciting, they are happening in foreign countries and Americans pay for these therapies all in cash. Insurance does not cover this. I do have one hope, that Barry will be approved for expanded access on an experimental immunotherapy that I asked for in April, but we are all waiting for the FDA and Rush's IRB to approve this.

We are incredibly grateful for the help you have all shared with us.
The bills are crushing us. Barry has not worked since 2020. While his tumor didn't show up until 2024, his deficiencies did. Because he was not under an employer at the time of hospitalization, he was not in the system for disability coverage under private insurance, and instead the better choice was just to take Social Security at 62. We did not have the funds to buy Barry any life insurance. The five of us living on my salary in HCOL Chicago is tight. We've used your generous donations to buy Barry a comfortable mattress, to pay deductibles and copays, to get protein drinks to try to keep him nourished, and to dig out from debt that has occurred from loss of income. I don't know how we could've done this without you, our friends and family.

I have focused on the "right now" of our economic situation. Going forward I honestly don't know if I should put any more towards debt, or lock up what money we have somehow somewhere to have enough for his funeral expenses. I'm so hoping and praying and anxious that the expanded access comes through in time, that this can turn around. But until that happens, I am lost. Barry never wanted to talk about "final wishes." He thought I was "morbid" for trying to bring it up. He believed - and still does - that he's going to beat this thing and get better. And maybe with the expanded access medication he will. 

I'm sorry I don't have better news. I am so incredibly grateful for folks who have reached out and called and sent cards and brought food - it's helped both Barry and I far more than you know. 

If you like to call, please keep trying. 
Holly: 773-732-6530
Venmo: @Holly-Blessen
Zelle: 773-732-6530

Holly's email:
[email protected] (main)
[email protected]

Thank you Family and Friends. We love you all.