Sep 8, 2016

Alright folks... I had my MRI last week and Holly and I saw the doc at Texas Oncology today.

Good news: I'm not gonna die anytime soon.

Bad news: Six weeks ago the tumor was 3.99 mm across or 49 mm3, last week it was 7.69 mm or 155 mm3 (roughly.) It is steadily growing and the previous scan was not an anomaly (damn.)
Here are the options at this point:

  1. Wait: We wait six more weeks, scan again and see how big it is.
  2. Radiation: Blast it with radiation! Not a fan of this before surgery.
  3. Chemotherapy: This seems to be the least favorable by all parties at this point.
  4. DNX 2401 (formerly Delta 24) Trial: Apparently this has only been in trial for glioblastomas and not ependymomas. Dr. Conrad (RIP) seemed to be all over it but Dr. Groves thinks otherwise. The trial involves a re-engineered cold virus that is injected into the tumor, eats it, and dies. It's cutting edge stuff but has a LOT of requirements and unknowns. The doctor did have a good point in that maybe in ten years it will be a proven cure and will be more readily available.
  5. Surgery: Have rockstar Dr. Lang do his magic again and take the sucker out. As Dr. Groves said, maybe it gives us 5-10 more years and if it comes back maybe DNX2401 will be a proven cure.

Decision: We decided that at this time it will be best to transfer care back to MD Anderson Cancer Center in Houston to Dr. Lang to discuss what to do next. I trust his opinion. He is one of the top neurosurgeons in the country. They are going to call me to schedule an appointment. We’ll go again presumably in six weeks and have another scan and a talk. I am guessing that we’ll be having another surgery to take it out in early 2017. This will give the tumor time to grow a bit larger so that it is easier to target. Maybe we’ll follow-up with radiation this time around.

How do I feel? Well, I don’t feel great, I mean.. There’s an unknown foreign body growing in my brain.. again. Sheesh.. I was a bit shaky talking to the doc (or I was cold) and talking about this crap is never easy. But it IS easier the third time around (really.) Thinking of surgery I asked the doctor what was around the tumor site this time as it is deeper than before… he said it is probably my foot motor center in the brain. I told him I already can’t move it that much so whatevs. Then he says, probably sensation. So a numb limb (yay!) But, we really don’t know at this point.

We are also starting to think about stupid stuff like... updating wills, getting stuff done that we have not yet, spending time together (dates!!) We also looked at the last surgery as a reference and I was in the hospital for 10 days and in the Houston area for almost two weeks. Last time it was easy… no kid. This time around we have Abi so we have to figure out what to do with her in school two days a week. And I’m not sure her being around post surgery in the hospital is a great idea. I think we have expenses covered for the most part as we have Tricare and they cover quite a bit, it's a blessing. A pain sometimes, but a blessing nonetheless.

Where do we go from here? We wait. We plan. We enjoy life. As I said before.. We’ll get through this. Thank you to everyone for your concern, thoughts, kind words and prayers. This is the easy part, the tricky part is yet to come. Thanks for riding along with us on our journey… (again.)

#cancer #braintumor #ependymoma

Jul 27, 2016

Getting reacquainted with cancer... for the third time

I cannot believe we have not posted in three years! I'll get down to it...

I had a brain MRI done about a week ago and today I got to see my Neuro-Oncologist... but not my regular doctor.. Dr. Conrad unfortunately passed away from an accident that apparently occurred at his home. Sad thing, he was a rock star, one of the top 100 is the US. I'll miss the guy. So instead I saw Dr. Groves, he and Dr. Conrad both came to Austin from MD Anderson Cancer Center in Houston, they know the staff back there very well. Good thing too, because today the scans showed an abnormality.

Six months ago the scans were perfectly clear. Today, which was my five year scan, shows a mass about 5mm across in size below the original tumor site further down in my brain. Dr. Groves is pretty certain that the tumor, an Ependymoma Grade III, has returned. We know its been there less than six months, but we do not know the pace it is growing at.

Top row of images show the white dot which is the tumor, bottom row is six months ago.

Tomorrow Dr. Groves is going to speak with Dr. Lang back at MD Anderson Brain and Spine, who was my neurosurgeon back in 2011, they will discuss the scans and come up with a plan. Right now there are three obvious options: surgery (again), radiation (last done in 2006) and the experimental Delta 24 (DNX2401) trial that Dr. Conrad and Dr. Lang worked together on. In addition, we will be doing another MRI in six weeks to see if we can chart the growth rate of the tumor.

We don't know much more than that at this point. When I heard the news I felt like I got the wind knocked out of me for a bit, but had to realize that we have this and this is the smallest we have ever found it which is a good thing. On the long drive home filled with rain and traffic, I notified Holly, family, and my closest friends in my battle to let them know. Now I am letting you know because we have never kept this a secret. We hope that what we have gone through over the past ten years has helped somebody out there going through something similar. Am I scared? Yes. Anxious, sick, worried, tired? All yes.

I don't want to go through this again. I hate it. I hate it for anyone that has gone through this. The uncertainty and questions. I don't want to go through it again and I don't want Holly to either. But now there's Abigail. I never wanted her to have to experience Daddy going through this like he did the past two times, but she will.

I know what you're thinking.. how can you help? Pray. Pray for a miracle. Pray for healing. Pray that the dot in the MRI was an anomaly and won't be there in six weeks. Don't feel sorry for us, fight with us. Encourage us. Be there if we need it. That's what we'll need in the coming weeks.
We'll get through this. I'll survive. I may lose more function after another surgery, but at least I'll have my life and family.

‪#‎cancer‬ ‪#‎braintumor‬ ‪#‎ependymoma‬