2016 consisted of a lot of moving, changing, and stressing for me (and our family), and in December I made the decision to make 2017 a year of joy. In all things, I am going to try to choose joy! The days are not always easy, but in all things I am trying to see the blessing… the kids got a stomach bug (but I didn’t, so choose joy); we had to pay a lot of medical expenses unplanned (but received a generous gift, so choose joy– and praise GOD!). I have lost so much time in being disappointed that things are not going the way that I want them to, and that is time I can’t ever get back! I don’t want to waste precious time this year. I want to enjoy every moment with the people that I love (with a smile). I don’t always remember, but when we miss an appointment or things don’t run on time, I am trying to smile and just enjoy the waiting. There are so many things I can’t control and stressing about the things I can is more than enough to keep me busy these days!
Plus I have so many praises to report:
Benjamin is more like his old self every day, he has more energy, more motivation, and is beginning to look more like himself! This brings me sooo much joy! He is taking time to spend with the kids and they are enjoying the time that they have spent building and doing things with him! I have even left him home alone with the kids for a few short periods of time while I have run errands. They know what to do in an emergency and he handled them the way that he would have watched them a year ago 😉
Benjamin’s 2nd MRI since starting treatment once again shows no growth and some reduction in size of the largest tumor. We are excited to report no growth since he started on this treatment.
One part of Ben’s current treatment has been having Avastin infusions every two weeks. This is not considered standard of care because it is typically used after chemo and radiation have failed, which Ben has not done. It halts the growth of the tumors and allows some of the other medications he is on to continue working. We have met with a dozen oncologists since leaving Texas in November and everyone who is willing to order this medication has not taken our insurance. The drug company is great about helping with patients who have financial need IF your insurance will not pay for it, but since our insurance will, we have been forced to try to find an oncologist who will order it AND take our insurance. In the meantime, we have had to make trips to Texas where we paid $15k for it out of pocket each time. We have been seen at the local military hospital and by the oncologists at the VA multiple times and have been told repeatedly that this is not standard of care and not a good use of their funds. They finally submitted our case to their ethics board and we found out today that they are willing to start doing his future infusions!!! PRAISE GOD!!! This will save us over $30k a month and the numerous trips to Texas! Not to mention the multiple weekly appts trying to find a doctor to treat Benjamin here in Ohio! Our whole family could use a break from that 😉
We have also been blessed by the numerous notes and donations that we have received. We would not have made it this far without our friends and family. Now that we will not need to pay for Avastin, we almost have enough money for two more months of treatment in Texas. God has provided for everything we have needed, in HIS timing!
I do have a few requests for prayer:
1. We would love our house in Clarksville to sell and for a good price. It would be a blessing to not have to continue to pay for it while it sits empty!
2. We also ask for continued prayer for Benjamin to handle treatment well and start to see miraculous results on his MRIs.
3. We ask for prayer for the doctor we have seen in Texas. Guidance for him and the staff that works with him. While not everyone agrees, we feel he is doing a good work and have personally met dozens of people who have seen miraculous healing by his unique protocols.
4. That should we decide to go in a different direction, whether because of finances or necessity, that God would lead us down the right path!
Thank you all again for your love & prayers! And remember, in all things CHOOSE JOY!!! Just trust and believe, because all thing are working together in HIS timing!
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