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!

Q&A with a Pathologist (Part One): Keith Ligon, MD, PhD

Thanks for all your messages of support!

Tom’s surgery is complete. All went well! He should be awake in 45 min to 1 hour.

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:

https://www.mealtrain.com/trains/872191

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.

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:

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/laser-interstitial-thermal-therapy

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

Look who had a good scan today!!!!

Next scan in May which is Brain Tumor awareness month. Soon we will be posting details on the 2021 virtual Brain tumor walk and rides!

I know there are a lot of terrible things happening right now but we do have a bit of good news to share. We had Tom’s scan today and it was stable. The spots are unchanged and one may be a little bit smaller. We also recently heard back on our second opinion from UCSF and they agree that the spots are likely delayed radiation damage to blood vessels and not indicative of tumor. These last two months have been a bit nerve racking until we got this news as contemplating another surgery and round of treatment 4 years later and in the middle of a pandemic was daunting to say the least. Now we really get to enjoy our anniversary getaway in a place that is very special to our hearts with some great wine from @domainedivio

Today is Glioblastoma Awareness Day. We wanted to share some facts with you all (scroll to end if you just want to see Tom’s current status).

Glioblastoma Facts & Figures

Glioblastoma (or GBM) is one of the most complex, deadly, and treatment-resistant cancers.

More than 13,000 Americans are expected to receive a GBM diagnosis in 2020.

GBM accounts for 48 percent of all primary malignant brain tumors.

It is estimated that more than 10,000 individuals in the United States will succumb to glioblastoma every year.

The five-year survival rate for glioblastoma patients is only 6.8 percent, and the average length of survival for glioblastoma patients is estimated to be only 12 to 18 months.

Survival rates and mortality statistics for GBM have been virtually unchanged for decades.

Despite first being identified in the scientific literature in the 1920’s, there have only been four drugs and one device ever approved by the FDA for the treatment of glioblastoma.

None of these treatments have succeeded in significantly extending patient lives beyond a few extra months.

Some patients have a glioblastoma upon diagnosis (de novo or primary GBM), while other patients’ tumors start as another, lower-grade type of brain tumor and over time progress into a glioblastoma (secondary GBM). A vast majority of GBM diagnoses are de novo.

Mean age at diagnosis is 64.

In addition to being life-threatening, GBM – and its harsh treatments – inflict devastation upon the brain, which controls cognition, mood, behavior, and every function of every organ and body part.

Many patients will lose their ability to work, drive, and a host of other functions that contribute to one’s sense of self and independence.

Glioblastoma is also one of the more expensive cancers to treat, often leaving patients and families with major financial hardship on top of the burdens of the disease.

Prominent Americans who’ve been lost to this type of cancer include: Beau Biden (son of former Vice President Joe Biden, and former Attorney General for the state of Delaware); Gary Carter (Hall of Fame Major League Baseball player); U.S. Senator Edward “Ted” Kennedy (Democratic politician); U.S. Senator John McCain (Republican politician and former presidential nominee); and Edward “Tug” McGraw (Major League Baseball player and father of country music star and actor, Tim McGraw).

Here’s the link to today’s presentation if you would like to hear more lf the latest on glioblastoma and hear from other survivors and providers:

https://braintumor.org/take-action/watch-gbm-awareness-day/

And now for the update:

It’s been just over 4 years since Tom’s diagnosis. We recently had Tom’s MRI and two spots have persisted. While they don’t present as typical tumor, one has grown about 1mm from his last scan while the other faded somewhat. We discussed the option of surgery to remove and analyze the spot with his care team but we all came to the conclusion this week that the spot is too small to warrant surgery and again is not indicative of tumor. Hopefully it will go away on its own like the other spots have. We will re-evaluate at the next scan. We are also going to work on getting a second opinion in the event we need a more in-depth consult in the future. Tom feels great, has no symptoms and is still riding his bike as often as possible. As always, thanks for all of your amazing support!

Huge thanks to all of you who supported Team Food Baby for the virtual brain tumor walk this year. We had team members in Oregon, Washington, Idaho and Hawaii this year! Tom’s sister Mary had some awesome shirts made for the Bird family team members! Even with everything going on the team still raised $2963 this year bringing our five year total to $18,420!!!! We still plan on doing the casserole party fundraiser once we can gather again. The virtual ceremony for the walk should still be up on the Northwest Brain Tumor community fb page until 10 am tomorrow if anyone wants to watch. They used some footage from an interview I gave a few years ago and you get to see our favorite Dr. Jerry on there too! Thank you all for your support!!!

Cheers to a mostly stable scan. The spots we found in November have “resolved” but there is a new spot in the field of radiation. It is most likely also radiation damage but we will continue to monitor closely, currently it is too small to biopsy. Thank you all for your words of encouragement. It really means a lot!