Tanner's Painting for New Ward at Cooks |
He's been staying with his Granny and Grandfather again this week and yesterday he texted me a photo of himself on their recumbent bike. He said that riding the bike seems to be helping him and that he's been able to walk around the house a little bit without his crutches (he was off the crutches when they put the rod in his femur within three days). I'm sure it will probably be okay by the time his college classes start on August 29th.
I received an email from Make A Wish and they wanted to schedule his trip to Hawaii from August 20th - August 27th but I had to email her back and ask about the time of the flight on the 20th since college orientation is that morning until noon. I guess we'll see what they can work out but I think he's running out of time to make the trip work out since classes will soon start.
He's spending next week with his dad so I'll have another week of quiet before he comes home and we start getting ready for school (and possibly Hawaii - LOL). The first week of August he has three doctor's appointments and none of them could work out their schedules so that we could see multiple physicians on the same day. So, we'll make a trip to Dallas early in the week to see the orthopedic surgeon, then mid-week he will have his chemo in Fort Worth, and then later in the week we will head back to Dallas to see Dr. Berryman (the new Oncologist). Busy- busy with lots to do before he settles down to school four days a week!
I actually received an email this week from D'Juanna at MIRT asking how Tanner and I were doing and have been considering how to reply. The thing is, when Bonnie (Dr. Barlogie's right hand assistant) emailed months ago asking if she needed to be looking for a job for me, I emailed her back about my concerns regarding Tanner and I living in Arkansas, practically on our own, and that I was considering finding a doctor here locally. I never heard back from her so I've basically just stopped communicating with them; they don't even know about Tanner's recent surgeries.
I guess I'm going to go ahead and email Dr. Barlogie and let him know what is going on and leave the ball in his court. When we were last there in Little Rock, he made it pretty clear to us that he wasn't willing to work with Tanner having his tests here in Texas and gave us the ultimatum of moving to Arkansas before he was scheduled to return for his follow up tests in August.
He basically put it that if we wanted Tanner to have the best chance at a long life, we needed to live in Arkansas. The thing is, Tanner doesn't want to live the rest of his life in Arkansas - and though I'm his mom and my instinct is to always take over and make all of his decisions (even his medical decisions), this is his life, his disease, and his decision.
We talked to Tanner's counselor at the Oncology Department at Cook's Hospital and she made some calls and the lady at the Leukemia and Lymphoma Society said there are lots of places other than MIRT where you can get quality Multiple Myeloma care.
Tanner and Dr. Albritton |
When we visited with Dr. Berryman at Baylor Dallas, he seemed to know all about the kind of treatment that Dr. Barlogie had given Tanner. He said that he wouldn't change any of Tanner's regimen and that he would be willing to work with Dr. Barlogie. I just don't know if Dr. Barlogie would be willing to work with Dr. Berryman. He just wants Tanner in Little Rock...
Gee I got up this morning and I am missing having Tanner here. We have been so busy the past three weeks gettng ready for school and taking care of business. What a joy it was for me. I have given Tanner the lead (with gentle guidance from me) and let him pretty much make his decisions about classes, etc. He is a smart and gentle young man and will go far in life. I am so proud to be his granny. I know he is going to have a great time in Hawaii....now he can go hang gliding...ha God is watching over him...and all His angels too.
ReplyDeleteThe people at Cook's are the most wonderful people and have become friends of Tanner's. I am so grateful for all of them and know each of them will receive God's special blessings.
Yes, this has been quite a JOURNEY and there are lots more journey's to go.
All our love, Granny and Grandaddy
Live well, Love much, Laugh often.
Angie: I love reading your posts, about Tanner....and from Granny Jane's message...no wonder he does so well....what a great family support system, he has.
ReplyDeleteKeep us up-to-date on the Hawaii trip. Really hope he gets to do it.