Tim and I have been together since I was 16, and he was 18. I'm now 25 and he is 27. We have a sweet 3 month old baby boy names Fawkes!
Tim was diagnosed with a 7x6x5cm tumor in October 2016, while serving in the US Air Force. He underwent surgery on November 21, 2016 where the tumor was fully resected. After surgery, the results came back that it was in fact cancer, and he was diagnosed with a grade 3 Anaplastic Ependymoma(which we later found out in 2018 that it was an incorrect diagnosis). In January of 2017 Tim was diagnosed with Leptomeningeal Carcinomatosis. The prognosis for leptomeningeal disease is often dismal, on average it is 3 months from the time of diagnosis. Tim had both full brain and spinal cord radiation from Jan-Mar 2017.
In April of 2018, Tim was medically retired from the Air Force because of his cancer. In May 2018, Tim started his new job at Lockheed Martin working on the F-35s. Tim's cancer had remained stable until July of 2018, which revealed that his cancer had returned with a vengeance. He had not 1, but 3 new tumors in his brain, and the leptomeningeal disease had also spread. Tim has not been back to work since his recurrence.
Upon finding out his cancer was back, Tim and I decided to try for a baby. He had been wanting to be a father for quite some time.
He underwent a 2nd craniotomy on Aug 13, 2018 to remove one of the tumors. He also had an ommaya resevoir put in place. The pathology revealed that he was misdiagnosed the first time. Tim is now diagnosed with a Grade 4 Glioblastoma with a rare genetic mutation. He has a G34 histone mutation.
Shortly after Tim's surgery, we found out we were expecting our first baby!
Because of the rarity of his cancer, we started being seen at the National Institutes of Health in Maryland. He started taking an oral chemo called Temodar daily, as well as Panobinostat, and he started receiving intrathecal Topotecan via the ommaya resevoir which delivers the chemo directly into Tim's spinal fluid. He started all of this in Sept 2018.
A couple of Tim's tumors started showing progression, so he underwent localized radiation treatments in November 2018 at the NIH.
Tim's cancer continued to progress so all chemotherapies were brought to an end. He underwent his 3rd craniotomy to remove a tumor that had doubled in size. His craniotomy was on April 24, 2019, a the day after our sweet boy was due. We drove from Florida to Maryland. Tim had surgery, and we drove back down to Florida where we had our baby on April 29, 2019. Fawkes Varian Alcorn is the light of our life.
Tim then started an immunotherapy clinical trial called Opdivo at the NIH in May of 2019. He flew up to Maryland every 2 weeks to receive infusions. Then, we got more bad news... In July, his MRI revealed that the immunotherapy treatment was not working, so it was discontinued. All of the tumors have increased in size, and have become more numerous. They have stopped counting how many, the cancer is now all over his brain.
The doctors have told us that they are running out of options for him... That he likely only has months left, not years. So they now have started him on another chemo called Lomustine. It is one of the oldest chemos out there. It is so strong that he only takes one dose every 6 weeks. He started taking that in July. The drs only hope for this chemo is to slow the progression of the cancer.
We are currently seeking out different kinds of alternative therapies for him. All of which are VERY expensive and entirely out of pocket. We had a consult with Dr. Mark Rosenburg at Advanced Medical Therapeutics in Boca Raton, FL and he suggested many different things. We are also getting into contact with a doctor in Germany that Dr. Rosenburg has urged us to do.
Some of the therapies we are looking into include, but are not limited to:
High Dose IV Vitamin C
Many different IV vitamins
Hyperbaric Oxygen Chamber
Numerous Vitamins and Supplements
IV Vitamin C Costs $250 per infusion, and the doctor we consulted with suggested he have 2-3 of them a week. Yeah, do the math. It's expensive. The supplements we have Tim on cost hundreds of dollars a month alone. The off-label drugs that the dr wants to prescribe will also cost hundreds of dollars every month.
That being said, we could really use some help. Neither Tim nor I are working right now. I have been taking care of Tim since he was originally diagnosed. Any amount you can donate is an absolute blessing. I have done my research, and these treatments are not just to buy time, they have actually cured people of their 'terminal' cancer.
You're not just helping out an Air Force veteran, you're helping a new dad be able to live long and raise his son. Tim is so optimistic and determined to beat this cancer and go on to live a long and fulfilling life.
If we listened to the prognosis for what Tim is diagnosed with, he would have been long gone. Being diagnosed with 2 forms of 'terminal' brain cancer, he has surpassed the life expectancy, and continues to defy the odds.
Please keep our family in your prayers. ❤
This is my Facebook page https://www.facebook.com/worgenrogue.alliance
You can look on here to see all the public posts about Tim since the time he was diagnosed.