Tuesday, June 21, 2016

Update and Father's Day

Sorry it has been a minute since I have last posted. I think of less posts as a good thing, because it means nothing is bad. I am making an effort to keep a post at least once a month on here to ensure the content is worth reading.

I think the shirt says it all
Since I last wrote, Katherine and Martin had their honeymoon, we went to Florida, had an MRI, and Father's Day!

I want to start off by saying that Martin is an amazing husband and encouraged Katherine to come down to Florida with us to be able to spend time with dad just two days after coming back from their honeymoon. He had to work, so he let his new bride leave him for 5 days and it is something we very much appreciated. Thank You Martin!

James and I planned this trip to Florida in hopes of giving mom some time to relax (she loves the beach) and give us time to hang out with dad away from the mundane routine of being around the house. The timing could have been better regarding chemo and such, but it was our Summer break and was the time we had to work with.

On the way down, dad had some episodes of falling at rest stops. After initially thinking they have been seizures, we came to the conclusion that it was more likely the case that dad was standing up too quickly after having sat for an extended period of time. In addition, dad had finished a chemo round the day before we left, this leaving him weak and with a variety of other side effects that weren't conducive to travel so soon. Dad pushed through, and by the second day, he was still tired but enjoying himself.
Isn't Mom beautiful?
Mom and the girls loved looking for shells and we made a point to take dad's arrays off a few times so he could walk around without his bag and wires everywhere. He seemed to really like that and everyone else was simply enjoying time with dad and away from the doctors appointments.

After returning home, dad had an appointment to have a follow up MRI. Dr. Weir was amazing and got us the results the same say instead of us having to wait for days or weeks like some people do. That evening he contacted me and told me the results.
Just like before. Opa ad Boo reading
Dad's tumor has remained stable since his last MRI with now evidence of progression of disease (that means no new growth!!). However, there is increased swelling (edema) around the tumor and this puts us in a kind of tricky situation. Dad's tumor is far too large to qualify for most of the newly diagnosed trails and if it were small enough, many of those trials exclude participants who have had SOC. Because dad's tumor has remained stable since his last MRI, he doesn't qualify for any of the trials marked for growth or recurrence. This is great because is means no growth, but it poses a very unique problem.
Many very promising immunotherapy trials do not allow for patients to have used a drug called Avastin. Avastin is an angiogenesis inhibitor, a drug that slows the growth of new blood vessels. This sounded very scary to me at first. I thought, if no new blood vessels can grow, how does the body repair itself? I spoke with Sheng and he assured me that this drug targets the vessels that supply the tumor. With the tumor being in the brain, we have a situation where the only part of the brain that has new vessel growth in someone my dad's age, is tumor. The glial cells don't require constant vessel growth, so it shouldn't impact the brain negatively. There are some side effects that I worry about such as intestinal bleeding, extreme fatigue, and some others...
Annabelle had to give kisses to Opa
Avastin is nicknamed "steroids on steroids." Now, it's not a steroid but it does the same thing that the steroids dad is currently taking, it just does it much more efficiently and without the muscle atrophy and weakened ability to heal that the steroids have. The biggest plus of this drug is that it frequently causes the swelling to go down so drastically that the patient feels almost normal. Obviously, this would be great.  This is where my anxiety kicks in.
I have been the one to do research, scouring journal publications, clinical trials, alternative medicines, etc. I am also the one who keeps an open line of communication with dad's doctors between visits. Dad trusts me to give him the information I gather and help make decisions regarding his treatment with his doctors. Dad obviously has the last say on everything presented, but getting the information and making sure I've looked at every angle for what it would look like to move forward with a treatment is scary and I am constantly afraid I will make or suggest the wrong thing.
Adelyn loves giving her Opa kisses
So, where we are now is looking for trails that will allow Avastin to have been used in the event the tumor begins to grow. Dad has an appointment with Dr. Weir tomorrow and I'm sure that will be discussed with the possibility of moving forward with Avastin infusions soon.

Boo insisted on sleeping with dad
Mark and Wendy were in town for Father's Day, and we all very much enjoyed ourselves. All 8 of us ate at Martin and Katherine's house before going to see Oliver at Theater Memphis and it was great. Watching the Fagin character, I could see my dad doing those kinds of dances when we were kids and I could tell dad was enjoying himself while at the theater. It was a loate play and by the end, dad was a little tired and slow, but it was a nice component for Father's Day for daddy and James and we were able to enjoy it as a family.

Please continue to pray for dad and his ability to beat this beast. We have no growth, so lets pray for shrinking of the tumor next! Be sure to thank God for keeping dad stable :) We thank all of you who have been with us from the start and those who continue to show your support and love by visiting and calling. I will update you as soon as something happens!

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