Visiting Barnes...

Well, we are back in the hospital again...

Late Wednesday night Dad had a very hard time getting comfortable and couldn't fall asleep. Finally he told Mom that he also had a headache and she took him to Barnes in St Peters. They did another CT Scan which showed swelling in the brain and was putting pressure on his brain and causing his headache. His doctors wanted him down at Big Barnes so he was again transported by ambulance downtown. He was given an increased dosage of steroids as well as a medication similar to Excedrin to help with the headache. Since then he has been feeling better and his headache has been gone for the most part.

Yesterday I wasn't able to be up at the hospital but Mom and Dad were able to talk to a few of the doctors.. We got the results from his MRI he had on Tuesday (this was a scheduled MRI and had nothing to do with his hospital visit) and it showed growth on the tumor. Because of the growth, the doctor running the clinical trial decided to pull him from the current trial with the Disulfrum. His doctors have also decided to try a different form of chemotherapy since the current plan is clearly not working.

We're still waiting to hear from the doctors on what they want to do as far as chemotherapy, but it sounds like they may try one through an IV or through a port. We do know he qualifies for a different clinical trial that is targeted towards a recurrent glioblastoma. I haven't been able to speak to the clinical coordinator yet but it involves two different medications that are given through an IV. One of those drugs is VB-111 that "is designed to try to kill cancer cells in the body by attempting to "cut off" the blood flow to cancer cells and/or tumors. If VB-111 is successful in cutting off the blood supply to the tumor, the tumor may not be able to grow." In this trial, like most trials, there is an experimental group and a control group. The experimental group will get the VB-111 and a second drug called Bevacizumab, while the control group only gets the Bevacizumab. From the little bit I've been able to google search, Bevacizumab is used as treatment for several types of cancer including glioblastoma multiforme and can slow the growth of new blood vessels. According Wikipedia, it can slow tumor growth but does not affect overall survival rate.

We did hear from the doctors via phone and they said Dad will be discharged today, however we are still waiting for them to come by and see him. Thanks for all the thoughts and prayers, I will update once we know a little bit more!!!

End of January Update

Dad had an appointment with Dr. Huang today and we got some good news... From the last MRI that Dad had, it looks like the tumor has lost some of the blood flow! Hopefully this means the Disulfrum is working and slowly killing the tumor. He has also gained three pounds and hopefully he will keep that weight on and not loose any with the next round of chemo.

They decided to lower his chemo from 400 mg down to 360 mg since the last round kicked his butt so bad.

He'll have another MRI on the 23rd of February. They're trying to get his MRI schedule worked out so that he has one every two months, at the end of a chemo round. The clinical trial needs MRI's every so often and the oncologists want MRI's as well and getting them on the same schedule has been a little tricky.

Finished with Round Two of Chemo!

The second round of chemotherapy tried kicking Dad's butt a little bit. Once he finished, he was very tired and didn't want to eat much. There was a few days that he laid in bed or slept the whole day and even had to use the wheelchair to get around the house. We also cancelled physical therapy for this week because he was so tired.

He's starting to have a little more energy and appetite, he walked a few laps around the couches yesterday evening and ate a small meal of pizza and salad. Hopefully he continues to improve and his body won't have such a harsh reaction to the next round of chemo, which will start the end of January.

Merry Christmas and Happy New Years!

Dad had a couple of doctor appointments yesterday which included a CT scan. The CT scan came back good, the swelling has gone down since his hospital visit and the CT was looking more like the MRI he had around Thanksgiving. His blood work is still coming back normal and we are continuing the clinical trial with Disulfrum. He started his second round of chemotherapy today; they doubled his dose from 200 mg to 400 mg however this is normal since he tolerated the last increase so well. They have decided to decrease his steroids (which was increased after his hospital visit) and will be slowing decreasing the dosage over the next couple of weeks.

Dad and I went to a Blues game a few weeks ago and had a great time! We had fairly decent seats and the Blues were able to bring home a win!!!!

We had a very busy Christmas Eve, Dad's extended family came over for Christmas lunch and then we had Christmas dinner with Mom's side of the family. Christmas day we were able to have a breakfast of cinnamon rolls with just the four of us, exchange gifts and then had the traditional meal of clam chowder before I had to leave for work. It was a very calm and relaxing morning!

 

Weekend Getaway

Mom and Dad were able to enjoy a weekend trip to Branson with some family friends over the past weekend and were able to stop and have lunch with Mikayla in Springfield on their way down. Other than some rain, they had a great trip and were able to do everything they had planned. Dad's slowly eating more and more, he said food is starting to taste better. He still drinks a couple Ensure's every day but is eating more than he was a few weeks ago.

Back to Barnes

Yesterday early morning Dad woke up with a headache. He took some Tylenol and put an ice pack on his head and started feeling better and went back to sleep. When he woke up in the morning, he had a headache again and was vomiting. Mom got a hold of one of the oncologists who wanted him to go to the ER and get checked out. At the ER, they did a CT scan which showed more swelling on the brain compared to his last CT scan although I'm not sure which CT scan they compared it to because he hasn't had one in a long time. They decided to transport him by ambulance to Barnes downtown, mainly because all of his doctors are down here and they have a little bit better technology. Dad said the ambulance ride was TERRIBLE, 45 minutes of bouncing around with a full bladder was not his idea of a good time.

They've increased his steroids for now and he seems to be responding well to that. He's feeling much better, has not had any more headaches and his stomach has settled down. We're still in the hospital, just kind of waiting for the doctors to decide what they want to do. Dad hates hospitals and waiting so he's just ready to go home but he has a private room this time around and has been watching war movies all morning.





5:32 pm-- They finally made the decision to discharge Dad. He will stay on the increased dose of steroids until all of his doctors are able to get together and decide what the best course of action will be. They do not want him on steroids for too long, there are only three types of steroids that cross the blood-brain barrier and once he becomes immune to those steroids, there won't be any that would be beneficial. He's still feeling fine and is just ready to be back at home!

Family Photo and Some GOOD News!

I just got off the phone with Mom, she said that her and Dad went out to Applebee's with some friends for dinner and Dad ate his entire club sandwich as well as the mashed potatoes. This is the first meal he's eaten in about a week!!! He said it actually tasted pretty good and it was nice to be able to eat like a normal person. Hopefully his appetite keeps up and he can gain a little weight.

Dad and Mom also picked up Dad's medication for the next round of chemotherapy as well as the clinical trial. His next MRI is January 11th and depending on how that MRI looks, we may or may not have an appointment with Dr. Chicoine a few days after. An appointment would mean there's something on the MRI that concerns the doctors so we're hoping for no appoinment.

Here is the picture of the whole family on Thanksgiving! Dad brought it to my attention that it was never posted, it completely slipped my mind! I love this picture, surprisingly we got such a great looking picture in just one try! This is Dad's side of the family, we're missing quite a few of the cousins and some uncles but this is everyone that was in town!! Love them so much!!