Had two week post surgery follow up today. Incision and healing is good there, still want me to restrict activity for another 4 weeks. At least I can get back on the trainer if I keep my heart rate low. They don’t want any increased activity or pressure in the area trying to heal. Any high intensity activity will do that and could cause additional problems. AND no weight training ☹
So low and slow HR training for me.
First race goal will be Cross Crusade – Coyote Run!
One week out!
Hey y’all. Just wanted to post an update since we are getting inundated with texts 🤣. No news is good news. Tom is doing very well one week post op. He is restless from the lack of exercise. We will be waiting a few more weeks for the pathology and will know his treatment then. We are so lucky to have so many people looking out for us. Thank you!❤️
Updated Photo
Finally got around to getting a picture up. As you can see much smaller than before and in the resection pocket. From what I understand, it was a straight shot right into the tumor so not other brain tissue to go through. Still feeling great, minimally invasive was true!
What’s next?
We’ve had Tom home for about 24 hours and everything is going really well! He does not have any pain and is already frustrated by his activity restrictions. We are thrilled with how much easier this part has been than last time! He is okay for visitors and if you come by don’t feel pressured to bring food or anything other than your walking shoes as he may want a walk!
Huge thanks to Torgy for meeting me yesterday with a latte and food the second they took Tom away 🥹. Suzanne came by too and the time flew by with the good company I had with me. Thank you both!
What’s next? We have two weeks (no strenuous activity!!! Tom are you reading this part???) until his follow-up appointment but that is just surgical and we likely won’t have any news on the pathology yet. He is on steroids for 10 days and anti-seizure medication for a week. Once they have the genotyping done on his tumor we can discuss treatment options. Likely this will involve immunotherapy but could also involve other things like more chemo and radiation, perhaps the return of the new and improved Optune he wore 8 years ago. He also told me he still wants to race the Cross Crusade series again this year!
If you want to read more about the pathology they are doing, this is a great article!
Thanks for all your messages of support!
Going home!!
Brain Surgery at 8:30, going home at 3:30. Modern medicine is amazing. Oh, and staff are Providence StV is awesome.
Surgery complete!
Tom’s surgery is complete. All went well! He should be awake in 45 min to 1 hour.
How to help
Hi everyone! Just waiting for Tom’s surgery to start! We keep getting requests on how folks can help. We love food! Here is our meal train:
Surgery date update
We got a call today that Tom’a surgery was moved up to this Thursday morning(!). We are almost ready but still a little shocking. Tom is happy because now he won’t have to fast for 16 hours and we are optimistic with an early am surgery he won’t be kept overnight. Stay tuned.
Here we go again
On August 15, 2024 Tom had his three month MRI and it revealed a 1.2 cm mass at the site of his original brain tumor. This mass was not detectable at his previous scan in May. It is his doctors’ professional opinion that this is a recurrence of his glioblastoma (GBM) brain tumor and they are united in their advice that we remove it as soon as possible.
His oncologist is recommending a LITT procedure. From Mdanderson.com:
“Laser interstitial thermal therapy (LITT) is an emerging technique to treat primary and metastatic brain tumors that can be hard to reach with conventional surgery. LITT is performed by implanting a laser catheter into the tumor and heating it to temperatures high enough to kill the tumor.
The catheter is implanted using advanced computer imaging techniques. The laser is guided through the catheter with real-time MRI, allowing neurosurgeons to limit thermal energy delivery only to the tumor. Most patients can go home the day after treatment and can quickly return to normal activities.
Laser interstitial thermal therapy is minimally invasive. It typically requires only a 2-millimeter incision in the scalp, and takes only a few minutes to perform.”
You can read a lot more about the procedure and its other applications here:
On Wednesday 8/21 we met with a surgeon through the Oregon Clinic (inside Providence St. Vincent clinic) who will perform the procedure. Today we received a confirmed surgery date of Friday 8/30. His surgeon is experienced and works closely with Tom’s oncologist. We love that this will be lower risk and a lot less invasive than the craniotomy that Tom underwent 8 years ago. At most we expect an overnight in the hospital and a quick return to normal activity. His surgeon shared that he typically does more complicated procedures and Tom’s tumor placement is in an easy spot and has a good round margin. His scan last week showed that the tumor is not collecting a lot of blood at this time which is a favorable indicator. At the same time of the laser procedure, they will also take a biopsy of the tumor for testing. We need to confirm what type of tumor it is and what genetic markers it had.
In 2016, Tom’s tumor had the IDH mutation and was MGMT methylated which made it more receptive to treatment, particularly chemo. We are hopeful that if it is the same tumor it will also have these same treatment receptive markers. Since 2016, additional genetic markers receptive to treatment have been identified and we hope to see if Tom has any of these additional markers that will help him fight the tumor. Doing this particular procedure will also help breach the blood barrier in his brain, allowing potential treatment. We are considering immunotherapy if we can get it in time to be effective prior to his surgery. It may also be considered after. There is no standard treatment for a recurring GBM, so options could include more chemo and radiation, Optune, immunotherapy or other drugs and trials pending what we find with the pathology.
As you may recall Tom’s neuro oncology team moved from OHSU to Providence a few years ago. We have reached out to OHSU as a second consult because Tom’s original surgeon is still there but we have not been able to get a date to meet with him until about another two weeks. It would be our hope that Tom will have already undergone his surgery at Providence by then or shortly after. We feel very confident in this plan to move forward without the second consult given the urgency of addressing this. We have also adopted Dr. Jerry, Gauri and their kids into our family. Despite their move to Oklahoma we keep in touch and Dr. Jerry has been in regular contact with us since we first got the news and always provides his valuable feedback. He likes and supports our plan.
It’s important to note that this tumor was caught early and was asymptomatic like last time. It is much smaller than it was 8 years ago and not in a critical area of the brain. We expect a great surgical outcome. Tom is in better health than he was 8 years ago. We have a strong team of providers around us. There are more treatment options and better technology. It is hard and shocking to be back here again, but we remain optimistic. Fighting this disease has been a marathon, but at times like now we must sprint. We are thankful our team of providers is treating it with the urgency it deserves. We all know that Tom is special, an outlier. He has defied the statistics before and we believe he can do it again.
Thanks for your love and support,
Jess and Tom
5 years ago today!
5 years ago today, I stood up at work to look outside and the world started spinning. Apparently, that little episode was a blessing in disguise!
After a quick trip to the emergency room and, what was to be the first of MANY MRI’s, my tumor was discovered. I was very fortunate to have something relatively benign reveal something so deadly lurking… without any symptoms. My episode could have ended up much worse. I think that early detection, before any symptoms presented, is one of the many reasons my treatment has been so successful. In addition, having a great set of doctors, an unbelievably supportive group of friends, and family, enabled my recovery fly by.
It is hard to believe I am approaching the 5 year anniversary of my resection. The 5 year survival rate for a Glioblastoma, in my age group, is only 9%! Truly, I am one of the lucky ones… So Far. Over the last 5 years I have met way too many people that have not been so lucky. That always leaves me asking, why me? How did I survive this brain tumor lottery (guess that means I will never win MegaMillions 😉, I won my lottery).
Well one thing I can do is help fund research to find a cure. I am by no means cured, I live with what they call PFS or NED depending on who you talk to, (Progression Free Survival or No Evidence of Disease). Due to Covid, all of the National Brain Tumor Society (NBTS) events are 100% virtual BUT that means we get to do the NBTS walk AND new to us the bike ride. Jessie and I are participating in both so if you are interested, join our teams and raise some money for Brain Tumor Research, maybe one day I can say cured, not PFS/NED/TBD …
The Month of May will be Brain Tumor awareness month. The walk takes place May 2nd (our team is Team Food Baby Virtual) the bike ride takes place two weeks later on May 16th (our team is just Team Food Baby). They are separate events, there is no entry fee so join up and get your friends to donate. There are some great gifts for fundraising. If you don’t want to participate but want to support the cause, donate to one of us, both of us, one event, both events… You decide.
My ride Page: http://www.braintumorcommunity.org/goto/TomBirdRide
My walk page: http://www.braintumorcommunity.org/goto/TomBirdWalk
BTW, if you are a Peloton or Zwift rider, they are doing virtual rides up to the event and on the day of the event.
Details here -> https://events.braintumor.org/events/national-brain-tumor-ride/zwift-peloton/
Sorry no casserole party but once we can meet in groups, it will be back!!