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.

Sunday, September 16, 2012

I can't believe it's been two weeks since my last update. Ugh, there are just never enough hours in the day!

On Friday, September 7, Collin's radiation appointment was earlier in the day, so I had hoped we would be finished early and be able to get an early start on the weekend. Blood had been drawn the day before, but I expected his labwork to be fine. Unfortunately though, that wasn't quite the case; his hemoglobin had dropped to 9.5, so after radiation on Friday, we had to go to the clinic for a blood transfusion. We didn't leave clinic until around 5:30 that evening, so by the time we got home, we had been out of the house for eleven hours again. So much for getting done early!

Collin gets blood

When we had our last "weekly see" with the radiation oncologist on Monday (Sept. 10), she said that overall, Collin had handled the radiation very well. His skin is not as red, but it is dry and peeling now. It's healing though, so that's the important thing. Collin has seemed more tired recently, and it is normal for fatigue to set in towards the end of or following radiation. Some kids need to go to bed earlier or have a nap during the day because of "radiation somnolence;" others sleep 14-16 hours a day. Only time will tell if, or to what degree, this will affect Collin.

On Tuesday, September 11, after Collin's radiation session was finished, I was talking to another mom before we left. One of the radiation techs came out to me and said that according to the computer, that had been Collin's final session. I had expected his final session to be two days later, on Thursday, since that's what had been on the schedule. Evidently, the doctor's order was for a total of 28 sessions, but whoever makes the schedule wasn't aware of this and had scheduled him for 30 sessions. Whenever someone finishes their proton therapy, they "graduate" and ring a gong in the hallway. We expected Thursday to be Collin's last session and we planned to make a big deal of it; my dad even took off work Thursday to come watch Collin ring the gong. So, since we and the staff expected Thursday to be Collin's last day, I decided we would return to the Proton Center Thursday and celebrate Collin's "graduation" then, as we had originally expected to do.

Collin with some of the radiation team

After leaving the Proton center Tuesday, we went to the clinic for our weekly visit with the oncologist. Collin's counts were looking good after the blood transfusion the week before. The oncologist will monitor Collin's counts over the next two weeks, and if they continue to be stable, he will start Collin on one more course of chemo on the 25th, right before we return home. It will consist of ten days of oral chemo, and two days of IV chemo given in the hospital. That means that at the end of the week we return home, Collin will be admitted to Hershey for the two days of IV chemo. Then of course about a week later, we'll be watching closely for a fever and hoping for no infections.

Thursday morning, Collin, Neya, my parents and I drove to the Medical Center. We had to first go to the clinic so blood could be drawn for labs for an appointment later in the day. Then we drove to the Proton Center for Collin's graduation. Kelly, the child life counselor, had a wagon of new toys, and Collin got to pick three gifts. Then he tried to ring the gong, and we all applauded for him. After he rang it, I helped him ring it again a little louder. He was also given some balloons. The staff are very caring at the Proton Center, and they really make each and every patient feel special.

Collin and his graduation gifts

Collin rings the gong

Collin, Mommy, and Neya

After Collin's graduation ceremony, we drove back to the main hospital to go back to the clinic. Throughout our time here, Collin has had visits with many different kinds of doctors, who have established a baseline against which he can be evaluated over time to see if/how the radiation has affected him. Thursday Collin was evaluated by a pediatric endocrinologist. She reviewed with us the things that Collin will have to be monitored for throughout his adolesence and into adulthood, and recommends that he sees an endocrinologist every six months.

-We will have to monitor certain blood levels to determine if he needs growth hormone; typically kids who've gone through radiation to the brian eventually need to take growth hormone injections throughout the rest of their lives because the radiation damages the pituitary gland. Typically, kids who've had radiation therapy are expected to be about 2.5 inches shorter than they would have been without radiation. According to the endocrinologist's calculations, Collin's expected height is now 68 inches.

-We will have to monitor Collin for something called precocious puberty. Typically boys go through puberty between the ages of 9 and 14 (it's 8 and 13 for girls), but kids who've had radiation to the brain, which can damage the endocrine system (particularly the hypothalamus and pituitary glands), can begin puberty at a very early age. If this happens, or a child is not mentally or emotionally ready for puberty due to cognitive damage from radiation even if they are at the right chronological age for puberty, there are medications that can be given to temporarily stop puberty. The endocrinologist said Collin is also at risk for precocious puberty because he had hydrocephalus.

-Collin will need to be monitored for hypothyroidism. Since he had radiation to his brain and spine, Collin's thyroid could have been damaged by the radiation. Symptoms of hypothyroidism include fatigue, dry/brittle skin/hair, constipation, and intolerance to cold. Hypothyroidism can be treated with medication.

-Diabetes insipidus can also be caused by damage to the hypothalamus and/or pituitary gland. There can be a problem with the manufacturing or storage of a certain hormone which causes the kidneys to have difficulty conserving water as they filter blood. Symptoms of DI include excessive thirst and urination, and can be treated with medication.

-The endocrinologist also recommended that Collin be monitored for adrenal insufficiency, although she doesn't think it is likely to be an issue.

Finally last week, I had a phone consult with the pediatric neuro-psychologist who reviewed Collin's neuro-cognitive tests with me on Friday. Overall, Collin's test results were pretty good. In most areas tested, Collin was either average or slightly above average for his age. There was one area that Collin came out slightly below average for his age, but the doctor felt this was more due to physical issues (mainly vision) rather than cognitive deficits. These tests, along with the others done by the endocrinologist, pediatric neuro-ophthalmologist, etc., will be repeated every year when we return to MD Anderson for follow-up visits, to monitor the effects of radiation.

We are looking forward to Bill's arrival on September 24. That week will be busy with some final doctors' appointments and a post-treatment MRI. Then we will all fly home on Sunday September 30.