As we move forward in obtaining insurance approval for the physician directed use of rapamycin, if determined needed from next month's MRI volumetric analysis, we found a wonderful pharmacy program through our insurance. While more expensive medications are on the market, rapamycin isn't cheap either. In calling different pharmacies around the region to find the best price, the pharmacy tech at the University Hospital Pharmacy asked if I had called our mail-order pharmacy through insurance to get their quote.
I called them and described our situation to the lady that took my call. She stated I needed to talk with the specialty pharmacy, that department handles situations like ours. I spoke with Frank, a wonderfully helpful person and he gave me great news. Our cost for a 90 day supply of rapamycin, what Dr. Viskochil prescribes for Travis for 90 days, is only $80 (no matter the number of bottles T needs for 90 days). Through this program, we pay less for a year's supply of rapamycin cheaper than the cost for 1 month at a local pharmacy. This is AMAZING!!! God continues to Bless our family, especially in regards to Travis' medical care.
At Tuesday's appointment I forgot to ask Dr. Viskochil if Travis could discontinue the Septra, preventative antibiotic for a certain type of pneumonia, that he had to be on for the rapamycin (Patients continue on Septra for 30 days or more after ending the trial). Travis can stop the Septra.
Dr. Viskochil also sent the results of his calculations of Travis' tumor growth taking into account Travis' growth. Travis grew ~4% while on the trial, so this translates to ~19% tumor growth while on the trial. While this calculation is inexact, it gives us a picture of tumor growth including T's growth. I keep reminding myself of this part...the trial only looked at part of Travis' tumor due to the differences in MRI settings between the machine settings here and in Denver. With these setting differences, the people at the National Cancer Institute could only compare the abdomen and pelvic region of tumor between the 2 MRI settings...the tumor part in T's leg was NOT included for the trial.
Travis' tumor volume for the abdomen and pelvic region only from this January's MRI is ~650mL. Almost 2/3 a liter in his abdomen and pelvis area is tumor...that's more than a 20 oz bottle! :S Yikes! We also learned that Travis' tumor progressed in spurts from Apr '11 to Jul '11 and Oct '11 to Jan '12. While surprising, it would make sense these things can grow in spurts since kids grow in spurts.
I took Travis to see a reflexologist on Friday, she did an aromatherapy and reflexology presentation to a women's group at our church a few weeks earlier. I talked to her about Travis after her presentation and she said she would be willing to see Travis. We weren't sure what we would find out, but if it brought some relief or insight, it would be worthwhile. Travis played with cars on the table during the entire session. She had her hands on various spots on Travis throughout the session and said his body had lots to tell her. She asked if he had headaches, I said he mentions them sometimes (more lately), and she touched a few places on T and said that should help. She also moved some areas of pain around on his legs, reducing them. Some of her questions were generic and could apply to most anyone, others were specific to Travis without her knowing the specific issues about Travis beforehand. He said his headache went away and his leg feels better. He didn't go into this appointment thinking that he would get relief nor was anything said to him about taking pain away thus eliminating the power of suggestion for him. Umm...ok...I'll take it!
She said to let T take the lead to see if he wants to go back to her. He didn't seem bothered through the entire process. It was interesting to see his legs move around during the session without interrupting his playing nor showing signs of discomfort.
We are so fortunate to have all the wonderful medical professionals in Travis' life (ours too for him). God led us on a journey to these people and where we are today, I'm glad we listened to Him and obeyed His command. He continues to open doors for Travis and our family, providing the best for T. His Grace is so wonderful.
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