We returned from Tijuana almost two weeks ago, full of hope and anticipation of the good things that were to come. Hope 4 Cancer was amazing, we loved the clinic, the staff, and were truly blessed by all the other patients and caregivers there. We were both excited to come home, but sad to leave that wonderful place behind.
The kids were excited to see us and I jumped back into work the morning after we returned. My semester working for GCU wraps up this week and then we will finally get back to some sense of normal around here.
Benjamin mentioned a few times last week that he was having trouble remembering things. This is something I have noticed for awhile, but he didn’t see to be aware of it until now. It troubles him and we are hoping that it will pass as he gets used to life back at home again. Over the past month, we were able to lower one seizure medication and also the steroid dosage he is on. We started using frankincense oil (morning and night) and are hoping he will be able to lower the steroid some more. Long-term use of high dose steroids isn’t recommended and the side effects are hard to handle.
Last Monday Benjamin had his bi-monthly MRI. We had the chance to see the scan on Monday, but we didn’t get a chance to read the radiology report until Wednesday and on Thursday we met with his oncologist. According to the latest scan the tumors are continuing to grow. The largest is measuring at just under 5cm and there are multiple additional tumors throughout the brain, not just the surgical cavity from the previous surgeries. His oncologist outlined what he felt were our three options for treatment: 1) do nothing (which is still something since we are now following the H4C protocol); 2) continue Avastin (which may slow the growth of the tumors); or 3) do chemo (which he says would be ineffective at this point and radiation is not an option). The appointment with him was discouraging, but we know that we serve a God that does not deal in the timelines that doctor’s set for us. Ben has chosen to continue with the Avastin in addition to the treatment plan he is on thru Hope 4 Cancer. We have high hopes that we will start to see the fruits of this treatment over the next few months.
The radiology report was discouraging for Benjamin, but I reminded him that regardless of the results, he had only had 1grand mal seizure in the course of 7 weeks; which is huge since we were averaging 1 a week for most of January/February. He had a wonderful afternoon with his mom and our kids and then proceeded to have two grand mal seizures that afternoon/evening. I think that the stress of hearing the MRI report was too much for him to think about. While the seizures have been less frequent; the past few have had a period of time afterwards when Ben is unable to communicate. It’s hard for us to hear him trying to speak to us, and frustrating for him when he realizes we can’t understand anything he is saying.
He has had a great week since then, and has had the opportunity to spend quality time with his brothers and sisters which does a lot for lifting his spirits. He even has taken a few minutes to play with the kids a couple of times this week. It is so encouraging to see him enjoying time with them. And answered prayer in that there have been no more seizures. We both continue to be confident that he will beat this and that God will continue to bless us!
We ask for your prayers for us in several areas:
1) For Benjamin’s health and healing!
2) For our family to continue to have faith and strength in all things!
3) For Benjamin’s memory, his mind has always been his greatest asset and it is hard for him to have trouble remembering things!
4) For our house in TN to sell, and soon (without us having to take a loss on it)!
5) For me to be able to work through the pile of paperwork involved with being reimbursed for the move and his medical expenses… I’m making progress finally, but it is hard when he can not help steer me in the right direction.
6) For us to continue to find and choose joy in all things!
Thanks for your prayers and friendship!
Staying Faithful Through the Unexpected
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