Well, I'm not exactly sure where to begin. First, THANK YOU for all of the thoughts and prayers. God definitely went before us and prepared the way. Second, I had an unexpected opportunity to talk with Dr. McCarty's nurse, Jill, who lost her husband in September. We didn't talk much, but I was able to give her some encouragement for her journey.
On to the update...Dr. McCarty was definitely ready for me and my questions! He had been studying Nick's entire medical history extensively. He talked with other radiation oncologists in the practice. They all agreed that Nick is a good candidate for stereo-tactic radiation therapy. :-) Dr. McCarty believes with 90% certainty (which is really, really good in the oncology world) that this radiation will sterilize the EBV that is driving the production of the cancer cells and kill the remaining cancer cells. He is also confident that the liver transplant will be protected. The side effects should be minimal. The amount of radiation Nick will receive will be mild in comparison to what the majority of folks receive. The estimated time frame for the radiation treatments is anywhere from 2 to 4 weeks of treatment. That is just an estimate until Dr. McCarty meets with Dr. Waples to coordinate chemo and IVIG schedules. Dr. McCarty also said he would like a fresh set of PET scans for use in planning and mapping Nick's radiation treatments. (It's a fascinating process.)
The only other major hurdle that we need covered in prayer is the financial side of things. I found out all this information today.
For all of Nick's life, he's had medical insurance that was a group policy. When he turned 19 in August, he lost his group coverage through the AllKids program. He aged out of the program. Nick isn't eligible for Medicaid, so I found him an Individual Blue policy from BCBS. It turns out that this policy is not all that great compared to what we are used to having for him. It isn't going to pay for all of Nick's medical costs. Please pray for us and the powers that be as Nick and I submit financial statements to receive assistance in paying for Nick's radiation, chemotherapy, and IVIG therapies. For the entire 18 years of Nick's health struggles, we have been blessed with excellent insurance coverage. Now...not so much when one chemo/IVIG treatment is $30,000.00 and I'm responsible for 20% of that cost....yeah...you read that right...I am responsible for paying $6,000 every 4 weeks. That isn't including the cost of the co-pays or the radiation treatments. The co-pays are $50.00 every time Nick walks through the door to see a specialist. He sees Dr. W once every 4 weeks and will see Dr. Mc at least once a week for the duration of the radiation treatments. I'm not sure about the co-pay amount for the radiation treatments yet.
As you can see, there is a HUGE need here. I don't know of any way that I will be able to pay even 1/10th of what is owed, especially while I am in school. Nick has been denied disability benefits. We are meeting with an attorney next week to fight this.
Pray as God leads Warriors!!!
We are definitely remaining...
In HIS Grip!