Monday, August 19, 2013

Monday, August 19, 2013

Well, today didn't go as planned. We got up at 4:00 am, and left the house at 5:00 am to be at TCH at 6:00 am. We were directed to the wrong place, and then I got a call on my cell phone saying that the doctor was sick and had to cancel the surgery. We chose to have this procedure done here because the ophthalmologist highly recommended this oculoplastic surgeon, and we were going to be here anyway, but this is the second time he's canceled on us (the day we flew down, his office called to cancel the pre-op appointment, and Bill had to make a few calls to get it rescheduled to a different day). I know there are surgeons closer to home who can do the procedure, so I'll make arrangements to have it done sometime after we get home. Sigh...I'm so frustrated!

Sunday, August 18, 2013

Sunday, August 18, 2013

Collin's latest MRI was on Wednesday, August 7th. Everything went smoothly despite a late start caused by one of the MRI machines breaking down. Best of all, the results were what we were hoping evidence of disease!!

Then on Friday, August 9th, Collin, Neya, and I flew to Houston. On August 12th, we had a one year post-radiation follow-up with Dr. Mahajan, the radiation oncologist at MD Anderson. She was very happy with how Collin is doing! There are still spots on his MRIs where the recurrent tumors were, but they are smaller and don't enhance (light up). Most likely the spots are scar tissue. We talked about my fears of recurrence after he finishes the last few rounds of maintenance chemo (historically Collin's cancer has disappeared while he's on chemo, but comes back soon after he's off treatment), and she reminded me that "we haven't been in this place before," meaning after having had radiation.

After seeing Dr. Mahajan, we went to the main hospital for Collin's neuro-psych testing, which monitors the effect of treatment on Collin's memory, cognitive status, etc. It was frustrating to watch because there were many questions he refused to answer, or answered incorrectly, even though I know he knew the correct answers. I guess that's what happens when a four year old boy becomes bored with answering a lot of questions! It will be six weeks or so before we have the test results.

On August 14th we saw the pediatric ophthalmologist from Texas Children's Hospital who straightened Collin's eyes in December. I was nervous about the visit, because I didn't know if there would be any improvement in the vision in his right eye because he cheats when he wears the eye patch. Much to my surprise, she did notice a slight improvement, and told me to keep patching! She wants us to follow up with the pediatric ophthalmologist at home in a few months, and she doesn't need to see us until next summer.

The beginning of the week was busy with appointments, but we've had some fun too. We visited some friends of my parents, and got to feed the turtles in a lake near their house...

We also got to spend an afternoon visiting Hannah, another medulloblastoma fighter we met last summer at the proton center, and her mom. Here is a picture of Hannah and Collin (notice they are both wearing their Peach's Neet Feet shoes!)

On Friday, we went to the Memorial City Mall so Neya could go to the American Girl store. As it turns out, Collin left the store with a new friend! They sell the Bitty Baby twins seperately in the store, so Collin chose a little boy. The staff at the store wanted to help make the doll look like Collin, so they put a hearing aid in the doll's right ear, and we got him a pair of glasses too. At home I have a tiny eye patch that matches Collin's and will fit over the doll's glasses. Collin is thrilled to have a friend that looks like him!

Yesterday morning we went to the Houston Zoo for a few hours. We enjoyed seeing a LEGO exhibit, as well as some of our favorite animals. And of course we had to feed the giraffes again!

Tomorrow Collin will have a small surgical procedure at Texas Children's Hospital during which an oculoplastic surgeon will place a gold weight into his right eyelid. This weight will work with gravity to help Collin's eyelid close more. Hopefully it will keep his eye more comfortable and protected, and lessen the need for lubricating eyedrops.