A little cryin' goes a long, long way......

I don't think it's a secret that I've been a bit frustrated with the Oncologist we're working with. It's not that I don't like Matt's primary doctor, it's just that she is busy with other patients/not available/out of the office/only comes in once a week/on personal leave or other such situations. I *think* there's something going on there, but no one will give us specifics. I really like the doctor we have been meeting with most often, but he has made it clear that he is not calling the shots about Matt's care, and that he isn't a neuro-oncologist. Again, he is a fine, kind man, but we want a specialist who has studied brain tumors and works primarily with children who have brain tumors. Warren and I left Matt's last appointment discouraged with the lack of information, lack of interpretation of Matt's scans, and lack of involvement by this doctor that we are supposed to be trusting to save our son's life. We have been strongly considering seeking a third opinion and even transferring his care to someone else - even though that would involve extensive travel at least once a month.

Anyhow, Matt had his blood counts drawn on Wednesday and yesterday we still had not heard the results. So, I called Oncology and let them know we hadn't heard Matt's numbers. I also gathered my courage and told the guy I was speaking with (who runs the office) a little about my frustrations. I also asked if he could tell me what was going on with Matt's doctor - he couldn't. I started to cry (how embarrassing!) and told him how discouraged I was that I didn't feel Matt had a primary doctor. It feels, to me, like no one is looking out for his best interests and I also told him that Warren and I were considering taking Matt elsewhere for treatment. The office guy said he was going to pass along my message and have the head of Oncology call me back.

A few minutes later I received a call from Dr. Lemons. He is also a neuro-oncologist (which I didn't realize - I thought our first doctor was the only neuro-oncologist on staff). He listened to my concerns, validated my concerns, said we needed to seek a 3rd opinion (this was his suggestion, once he looked over Matt's chart and saw that we had a variation on pathology opinions). I told him how unfortunate I thought it was that Matt had never met with his primary doctor. Long story a little bit shorter, he is going to take over as Matt's primary doctor! We will meet him the first time at January clinic! He said he would go over a lot of details about Matt's scans, diagnoses, and treatment options. I am so thrilled! I am embarrassed that I broke down and cried to these people, but it seemed to produce the results that we really needed. Hopefully, with our new oncologist, we will be able to hear more details and feel more confident that we're heading in the right direction with Matt's treatment!

In other Matt news, on Tuesday he had the opportunity to go to SLC with the 4th grade from his school to celebrate the re-dedication and renovation of the Capital building. Three schools from Logan went and had a 30 minute performance in the rotunda. It was so fun! Matt even had a speaking part. He was the first speaker and introduced their schools. His teacher said that he was her absolute first choice because of his expression and confidence when speaking. I was so proud of him and couldn't help but compare this confident boy with so much talent, to the boy who started the school year who was unable to remember where his classroom was! We have watched an incredible transformation over these past 6 months. There is still a long way to go, he has good days and bad days, and I'm not sure Matt's memory will ever be at his pre-tumor 100%. But if it didn't get any better, he would learn to compensate and would be able to function just fine. I would not have felt that way six months ago! We are incredibly thankful for this progress, and that Matt is still his happy, sweet, quirky self!

Love,
-Alli