This past week Benjamin and I met with his regular doctor and went over all the test results from before his surgery. In order to determine the cause of the tumor, the doctor had ordered a plethora of tests run that would determine what in his environment, body, etc would have helped contribute to the tumor. The test results came back with astonishing results. According to the doc, there were no toxins or anything in Ben’s system and he should be labeled “Mr. Clean”. He made some recommendations for further treatment and told us he had discussed Ben’s case with another neurologist and would like to refer us to him to discuss treatment options. We have a meeting scheduled for Wednesday morning with him.
We also spent the week playing phone tag with the surgeon who did his brain surgery. Apparently Ben was the topic of discussion at their tumor board on Monday and the surgeon wanted to discuss Ben’s reasons for delaying further treatment. They finally linked up on Thursday afternoon and Benjamin said they had a great (long) conversation. The doctor shared that Ben was a great candidate for chemo/radiation treatment because of how well he had responded and come through surgery. I think they were a little surprised for find out he was already back at work. He also shared that the tumor Ben had was much more rare then they originally thought and that 49 out of 50 docs would have thought it was the grade 4 GBM. He said he might only see 1 of these anaplastic oligodendrogliomas a year. Benjamin spoke with him regarding his concerns about the treatment and his cognitive functioning and the doctor stated that should the tumor continue to grow, his cognitive functioning would be in potentially worse shape. He said he would love to sit down with Ben and discuss this more, so… we have an appointment with him on Monday afternoon.
Right now we are planning to leave for NC on Thursday afternoon, and since I am the only driver we are going to drive as far as we can with happy children and then stop for the night continuing the rest of the way Friday. We are waiting to hear back on whether we will be returning home on Sunday or heading to Duke or Walter Reed for a second opinion as requested by Ben’s work. Prayers for traveling safety would be greatly appreciated!
We are also continuing to pray that God would direct us to the perfect back-up babysitter. We love our sitter and trust her implicitly, but as a college students she has a busy schedule and can’t always be here to cover all the appointments we need to get to!
BUT HERE ARE A FEW OF OUR MANY BLESSINGS::
**We have an amazing group of people praying for us and that truly does help lighten this burden.
**In addition, Benjamin has had a friend driving him to and from work all week which has been an incredible blessing as he goes in before the kids get up in the morning and comes home during their second nap!
**And my neighbor/friend has been a tremendous blessing and has stepped up multiple times to help with childcare so that I can take Ben to his appointments
**Also, Benjamin and I feel incredibly healthy and proud of ourselves for adopting this new healthier lifestyle. We have enjoyed sharing with our family and friends how wonderful it is to be healthy!
A journey with our family through multiple sclerosis and muscular dystrophy. As well as a look into our struggles and faith!
Being still for Caitlin Grace
The Joy of the Lord is our Strength
Finding Beauty in the Everyday.
Chasing Christ in the Chaos
Learning to Embrace the Storms of Life