The last two months have both seemed to slowly tick by and fly by at the same time. As many of you know, Benjamin had a series of seizures a little over a month ago that resulted in a week long stay in the hospital while the doctors balanced and increased his meds to stop future seizures. The result of this was that he came home on a pretty high dose of two anti-seizure drugs and very little memory of his week in the hospital. During the days following his release from the hospital, Benjamin was still in a fog. As time went on, he regained memories of the days before the seizures started and also of the days since he returned home. The memories from his days in the hospital aren’t there, but that is probably for the best. 😉
Now that Benjamin has regained his memory and some of his focus, we have been trying to determine what steps we should take next in this process. We have met with the neurologist who is following his care twice, and both visits have resulted in them increasing the seizure meds in order to get him closer to a therapeutic dose. While there have been no more seizures since the hospital stay, the doctor wants to be cautious.
A couple of months ago, Benjamin learned about a conference called The Truth About Cancer that would be taking place in October in Grapevine, TX. He made plans to attend it alone to gain the knowledge that he knew would be provided by the doctors there. At the time, we didn’t want to ask anyone to keep the kids so that I could attend with him. However, after our trip to NY, we felt that it was important for someone to attend with him. His mom and sister both offered to keep the kids, so we made plans for me to attend with him.
The conference two weekends ago was very encouraging. We literally heard hundreds of doctors speak on their treatments and protocols and the steps that they have taken with their patients to beat cancer (many of them have faced cancer themselves). We came home with loads of information to sort through and process and decisions to make. The last step in this process was to meet with a neurosurgeon here in Ohio to determine their thoughts and what they recommended. It took almost a month to get an appointment with this surgeon. Before they will meet with you, they take your entire medical record before their tumor board to determine a course of action for your treatment. Our meeting with the neurosurgeon was a little disappointing. He didn’t have much encouraging to say about Benjamin’s options. He told us that the only cure would be to do chemo and radiation… I told him the first time Benjamin was diagnosed we were told that this treatment would maybe prolong his life two to three years. I asked him how long this cure would last and he excused himself to leave the room. He came back about five minutes later with a research study to show us. He said that this treatment seems to be doing a little better since the last time we went through this and now the average is 2 years… with the possibility of living as long as ten more years given the type of cancer that Ben has been diagnosed with. We asked a lot of questions, curious what he would say about the things we had learned in Texas without a lot of encouragement.
After Benjamin was diagnosed with cancer the first time, we heard about a Dr. Burzynski (Dr. B.) in Texas who treated cancer patients who traditional medicine had given up on. He determined that if the tumor came back he would either see this doctor in Texas or Dr. Gonzalez in NYC. Since Dr. Gonzalez passed away shortly after we first started seeing him last year, we started researching Dr. B. once again and following the reports from his research and clinical trials.
We spent the past two weeks in prayer trying to determine whether this was where God was leading us to next. I called the clinic last week and requested their application packet. I was told that this treatment in Texas was an option and we sent in Ben’s medical records last Thursday. We spoke with the doctor’s office today and will be heading to Texas this weekend for an appointment on Monday morning. The doctors will meet with us on Monday for 3-4 hours to discuss the treatment and if we agree to move forward, they will start the treatment on Tuesday. We were told to expect to be there for 1-3 weeks depending on how long it takes to get Benjamin adjusted to the treatment and for both of us to learn the regiment he will be on when he comes home. For those of you curious to read about this treatment: It typically involves an antineoplaston therapy: http://www.burzynskiclinic.com
We understand that not everyone will agree with the decisions that we have made to travel and be a part of this clinical trial. We ask that regardless of your feelings, you pray for us as we travel. We have prayed and feel this is the direction that God is leading us!
In addition, we ask that you pray:
1. That Benjamin will take to the treatment quickly and that we will see miraculous healing. That even the doctors will be shocked at how quickly he recovers.
2. For safety for our entire family as we drive to Texas this weekend.
3. That God will provide the funds we need as the clinical trial is not covered by insurance.
4. That our children will handle the travel well and that they will understand and feel loved by us while on the road and staying at hotels.
5. That we would find renters for our house in Tennessee. We will be stopping there this weekend as our current tenants have just moved out. We are praying that the property managers will find new tenants quickly!!!
As always, we thank you all so much for your love and care for us! God is so good, and we look forward to sharing with you as we learn and grow from this!
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