Matt and I are still trying to sort through what this next phase of Brady's care is going to look like. In all honesty, we feel WAY out in left field, all by ourselves, calling all the shots. By going to Sloan we in turn seemed to have almost cut ties with Strong. I know I have used this expression before, but Brady isn't on any one's "To Do" list. It is up to us to ask for blood work, urine analysis, scan dates, and I have to say I'm started to crack a little under this pressure. So we thought we had made a clear decision to just go to Sloan for the scans. However, in just dealing with the scheduling process, I feel all the old familiar frustrations of being a little fish in a big pond. For example, we still don't have a doctor there who we deal with. We have very briefly met with 3 of their oncologists during our 3 trips there, all of whom learned about Brady upon walking into the office to meet with us. We don't have "a doctor" to call when we have a concern. For example, I had to call the surgeon's office to ask how to get scans scheduled. They gave me the number of the oncologist's office that I said I had liked the best. A different oncologist's office called me two days later with scan dates. If we do go there we will just have the scans done, then come home. We will have to initiate a meeting with "a doctor" if we want one, and if you remember there are no real appointments, you just kind of go and wait. So how does this play out if we are having to go down there every 3-6 months for the next 5 years? Who is our go-to person? When/where is Brady having his blood/urine tested? We are toiling over these questions and are frustrated that we have been sort of left in the dark to make these decisions. Please be praying that we will have a clear cut plan of action soon...My opinion is that we have enough to worry about just living with a child with cancer, we need a doctor to coordinate his care. We don't want that job anymore!
I forgot to give an update on Cara's appointment yesterday! I really liked the new eye doctor. He is noticing some irregular movement with her right eye, however, she did not do the head tilt that we see at home. It is hard to recreate the situations where we see it when she is in a small exam room. She only tilts her head when looking at things in the distance, further than about 10 feet. He feels that what I am describing and what he saw sound like a 4th nerve palsy in that eye, basically a weakening of her eye muscle. There is a quick surgical procedure to correct this, but he needs to see her again at least once to really pin down the problem. Although we have been dealing with this for 1 1/2 years now, I'm glad I found a doctor that is listening and willing to do something about it. We go back in September.
Allie had her appointment with the dermatologist today regarding the spot on her leg. The doctor said it is a Juvenile Xanthogranuloma (technical, I know, but I like to have it written down somewhere!) Basically it is just a small, bumpy, orangey-brown spot on the back of her thigh. It may grow, it may go away, but it isn't likely dangerous. He gave us the option of leaving it or removing it. Hey---if this mom is given the option of easily removing something from her kids body--that is a no-brainer! We are going to have it taken off, it will be an office procedure with a numbing needle-stick and then a few stitches. Poor Allie, but in the scheme of life in the past year, seems easy!
RSVP's for the Brady Bash are rolling in! Hooray! Can't wait to celebrate!