Friday, September 28, 2012

Thursday, September 28, 2012

On Tuesday the 18th, we had our weekly visit with Collin's oncologist at MDACC. Collin's appetite was still very small, so I asked the doctor if an appetite stimulant would help. He said it was worth a try, and prescribed a low dose of Megace to be given once a day. Collin's labs were good, and the doctor said that if the labs were good the following week, he would start Collin on one more course of chemo. He also explained that the MRI that was on the schedule for Sept. 26 was really too soon; they typically wait until four weeks after the end of radiation to do the post-treatment MRI because if the scan is done too early, there is a chance the results will be interpreted as false positive, meaning there may still be inflammation that looks like a tumor. I had also been told this by the radiation oncologist; no one knows how the MRI got on the schedule. So the scan originally scheduled for yesterday was canceled, and Collin will have his first post-radiation MRI at home on October 18.

On Wednesday the 19th, the weather was beautiful with low humidity, so on a whim I decided to take Collin and Neya downtown to the Houston Zoo. We had a good time, and our favorite part was feeding the giraffes. While we were there, the shuttle Endeavour flew over Houston (piggybacked on it's 747) on it's way to Ellington Field where it would be on display until that evening. So, since it was a once-in-a-lifetime opportunity, after we left the zoo, we drove to Ellington Field to see the shuttle. It was amazing to see!

Feeding giraffes
Neya takes a picture while Collin waits patiently
Visiting the Space Shuttle (Collin was sleeping)

On Saturday the 22nd, I went out to lunch with a childhood friend who happens to live in Houston. She brought gifts for the kids, which included cups with straws from the Disney Store. Collin hasn't been able to drink from a straw, because the weakness on the right side of his face prevents him from closing his lips enough to get a good seal around the straw. But when he saw the cup, he wanted to try, so I cleaned it, filled it, and put it to his lips. I held the right side of his lips closed, and told him to suck like he was sucking a spaghetti noodle. Low and behold, he did it!! Then, I stopped holding his lips, and he was able to drink from the straw all by himself!! It may not seem like a big deal, but Collin has wanted to be able to do this for quite a while. He was very proud of himself, and kept saying, "I'm like a big boy now!!" It was very exciting, and I can't wait to show his speech therapist!!

On Monday the 24th, Bill flew back down to be with us this week. We have really missed him, and were so excited when he finally arrived!

This past Tuesday (Sept. 25), we were again gone for 11 hours, driving, waiting, and having our last appointments at the Medical Center. We had our last visit with the oncologist. We've noticed some improvement in Collin's appetite since starting on the Megace, and I was happy to see that he had gained a few ounces since starting it a week ago. The burned skin on his head and back is mostly healed. His labs were good, but after speaking with Collin's oncologist in Hershey, the oncologist in Houston told us Collin would not be starting the last course of chemo as we expected. Since Collin has had enough chemo in the last two years to be at risk for a secondary cancer like leukemia, they decided to try something else instead. He explained that sometimes with radiation, there are cancer cells that are only partially damaged from radiation, and as the body begins to heal and grow again after treatment, these cells can begin to grow again, and the cancer comes back. So, they will put Collin on two drugs that will help prevent this. One drug, called Vorinostat, will help kill cancer cells that are only partially damaged before they have a chance to start growing again. The other drug, called Accutane, helps convert damaged cells into healthy cells. Collin has been on Accutane before, and tolerated it pretty well. These two drugs will be started sometime after we return home.

Collin had his post-radiation audiogram Tuesday as well. The results were mostly consistent with past hearing tests; there is high frequency hearing loss in Collin's right ear, but his left ear is still good. Collin will need a hearing aide in his right ear when he gets older and starts school, so that he can adequately hear when there is background noise that would make it too difficult for him to hear.

Collin at his audiogram
Collin at his audiogram

Our final visit Tuesday was a follow-up with the pediatric neuro-ophthalmologist at Texas Children's Hospital. She said there was definite improvement in the surface of Collin's right eye thanks to the lubricating drops and ointment. However, the vision in Collin's right eye is still very bad. I used to be very good about patching his good eye, which forces his brain to listen to the bad eye, but I let patching go by the wayside while dealing with his relapses. My neglect has hurt his vision. So I will begin patching him again, starting with five minutes and working up to two hours a day. Hopefully his brain will begin to listen to that eye again. The ophthalmologist was discussing the surgery she will do to straighten his eyes in 2-3 months, and was trying to figure out what she can do to help the vertical nystagmus as well. Collin's eyes bob up and down constantly, and the opthalmologist feels this is related to the damage in the cerebellum where Collin's original tumor was; that area of the brain controls things like balance and eye movement. She thinks she can tighten the muscles behind the eyes to cut down on the vertical bobbing at the same time she does the procedure to straighten Collin's eyes. She then referred us to an Ophthalmic Plastic, Lacrimal, and Orbital Surgeon at Baylor College of Medicine. She wanted us to consult with him about either a permanent tarsorraphy to the right eye (where a portion of the top and bottom eyelids are sewn together to make the opening of the eye smaller) or a gold weight (a small gold weight that is surgically implanted into the eyelid to help the eyelid close all the way). The hope is that one of these procedures would help Collin's right eye feel more comfortable and keep it from drying out so much. Collin spends most of his awake time holding his right eye closed, probably because it is just so uncomfortable from not closing.

So, we went back to the Medical Center one last time Wednesday afternoon to consult with the Ophthalmic Plastic Surgeon at BCM before we fly home. He observed Collin's eyes for a few minutes, and feels the gold weight will be better for Collin from an aesthetic standpoint. It would be a 1.2 g weight, and it uses gravity to help the eyelid close. He said Collin's eye will look a bit droopy compared to his left eye, but right now the right eye is open wider than the the left eye, so they aren't symmetrical anyway. He could do the procedure about a month after Collin's eyes are straightened. So as it looks right now, Collin is tentatively scheduled for the surgery to straighten his eyes on December 3; and then early in the new year the gold weight can be implanted. Collin and I will fly back down to Houston for a week or so for both of those surgeries, which will be performed at TCH.

As our time in Houston comes to a close, I have mixed emotions. We have received great care here, and there are many people I will miss. At the same time, we are eager to get home and back to "normal." We are flying home Sunday the 30th, so I'll be spending the next few days packing our suitcases and the boxes we'll need to mail home. Interestingly, the very reason we've been unable to come visit my parents here in Houston in the last few years (Collin's cancer) is now the thing that will bring us back regularly.


  1. Glad you all had such a nice day, the zoo and the space shuttle! Great picture! Did he ever wake up to see it?

    Ashton's MRI is coming up on Wed. and I hate it. I will be on edge till I hear he's awake from the anesthesia, and then on edge again till I hear if the MRI is clear.

    Ashton's grandmother

  2. P.S. I hope the surgeries and gold and all help his eyes. That must be so uncomfortable. Sounds like he's got some great doctors.