With all the craziness associated with all the boys starting school these past few weeks, I've been a little behind on the blogging. Travis has reached the point in the clinical trial where the MRIs are at the end of every 6 4-week courses. Travis had a MRI in July, his next one for the drug trial will be in January. However, Travis could still have a MRI in October if his geneticist felt one was necessary, this would follow the every 3 month MRI pattern irregardless of the drug trial. Since the last volumetric analysis showed NO tumor progression over the previous 3 months and that has been the pattern, Travis may be able to skip a MRI in October. T's geneticist will see him at the regular appointment and can order a MRI, if needed. We are praying for NO MRI in October. It is such a relief knowing that he's responding positively to this trial. Praise God!
Travis was fitted for another boot/brace at Shriners 2 weeks ago. That boot should be ready in the next few weeks and we'll head over there to pick it up. That should be an easy appointment for all of us, fine tuning the boot to his leg. :) Travis sees his Orthopedic team at the beginning of November for a regular appointment. The last time he had x-rays there when he was bearing weight was in early February. I spoke with the PA Travis sees at Shriners late last week and he was glad to hear that Travis was walking again (again). As long as Travis keeps progressing (or not regressing) with his walking, all is well and we "dodged a bullet" with the fracture. Thank you for all the prayers.
This Friday marks the end of Travis' 11th 4-week course, and that means a blood draw. As long as the drug level remains in range, his next draw would be in October. Also, Travis' mouth sores have healed. :) It's hard to believe that T's been on this medicine for nearly 44 weeks now. Wow...that means it's been nearly a year since our first trip to Salt Lake City to get a 2nd opinion in Genetics and Orthopedics. What a year it has been!
Travis has been doing good with his PT homework. He starts weekly PT sessions next week and those appointments go through the end of October. The physical therapist will see how things are progressing in mid-October and tell us if he long he'll need weekly sessions. He won't be ending physical therapy, but will get built in breaks for a month or so at a time every so often. We will talk with the Occupational Therapist in the coming days and hear her plan for Travis. We've started a sticker-reward chart for some areas to allow Travis to have "control" in areas and not battle us. That continues to be a good system for all of us.
We appreciate all the prayers and support for Travis and our family this past year. It's been quite the journey for all of us, one filled of prayer, love and support. If you told me a year ago that my son would be participating in a clinical drug trial and and we'd move to Salt Lake City, I think I would have said that you would be confusing me with someone else. We are where God wants us to be and we are thankful that He provided us a transition as smooth as possible.
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