So many of you have asked for updates about how Benjamin is doing. The almost three weeks we have been home from Texas has flown by in a series of doctor appts and running around. It is hard to believe we have been home that long already!
Benjamin is doing great. He has taken well to the treatment and has not been getting sick from the pills and medicine. The swelling in his head has gone down considerably and there does not seem to be as much pressure on his forehead. While he still needs a nap most days, he is not nearly as tired as he was before starting the treatment. He is responsive and cheerful, and seems to not have as many gaps in his memory. He will still ask me the same questions multiple times sometimes, but he seems to understand the answers well. He still has a short fuse when it comes to getting upset, but he is starting to realize this and acknowledges that it is something hard for him to control, which is a step in the right direction.
We had a serious of appts at the military base near us, but they were unwilling to give him the infusion he needed and despite having a prescription, we were unable to find an infusion clinic in Ohio who could help us with the type of medication he needed. We have visited several clinics and made dozens of calls, but in the end we decided Tuesday that we would have to fly back to Texas to get an infusion this past week. Ben’s mom agreed to keep the kids and we made plans to fly Wednesday afternoon.
Wednesday morning while I was getting ready for work, Benjamin had a seizure. He only had one, so after getting the all clear to fly, my dad graciously met us in Texas for the infusion in case we needed a little bit of extra help. The trip was uneventful and while we were there we met another lovely Ohio family who gave us some leads on infusion locations in Ohio for Ben’s next infusion! We got home late Thursday evening and Friday morning Ben had his first MRI since starting the treatment. The initial scans do not show much (if any) tumor growth (we don’t get official reports until next week). This is a huge answer to prayer as it shows the treatment is working. Between Sept and Nov the growth in size and number of tumors was significant, so no growth is major at this point! Praise God! I will share the radiologists notes when we receive them.
I want to thank you all for your prayers and financial support. I wish I had time to thank each of you personally at this point, but our days are so full with appts and treatments and phone calls right now. With the help of my parents we were able to pay for the first two months of Ben’s treatment and the support of our extended family and friends has helped us raise enough to pay for next month’s treatment. Lord willing, we will be able to find a place that takes our insurance before his next infusion as each bi-weekly infusion costs about $14,000. Benjamin does not quite comprehend the financial aspect of all of this right now, but we both have been so blessed and encouraged by your outpouring of love!
If you think of us in prayer, I ask that you would pray:
1. That the treatment will continue to work and he will continue to improve in how well he feels.
2. That we will be able to find a place locally to do his infusions.
3. That he will gain back the use of his right side quickly. Each subsequent seizure weakens the right side of his body and he has difficulty using that arm. As time goes by without seizures, he regains the use but it takes a little longer each time.
4. That he will remain seizure free. His seizure threshold is low right now and he is on max dosage of both his medications, so unless they introduce another medication he is at risk for having more seizures.
5. For our children- without going into much detail- Benjamin is blunt and speaks his mind. The children have a partial understanding of cancer and seizures and tumors and their fear level at losing one (or both) of us is high. I have tried to alleviate this, but when we are constantly gone to appts it is hard for them to really feel we are “here.”
Finally, I ask for your prayers for us this coming week. Months ago, my parents planned to take our children to Disney for their Christmas gift from them. Benjamin’s rediagnosis and treatment made us question whether to follow through with this trip, but Benjamin feels very strongly that we should go. He is feeling good for the most part, and has more energy than he has the past few months. We both believe that after the past few months this is exactly what the kids need, a week of fun with their parents and grandparents. That said, I have debated whether this trip is a good idea (and have not even told the kids where we are going and we leave tomorrow). I am praying that we are making the right choice in going and am choosing to believe it will be a good, healing, fun week for all of us as a family!
Thank you all again for your prayers and your financial support… you can’t possibly know how much it means to me!
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