Sunday, September 16, 2012

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.


  1. Jen, you're an amazing mom. And Collin is an amazing kid. Much love being sent to both of you.

    ~ Judy Hoch

  2. Wow!!! You are a rock star - and so is your family. Way to go Collin - loved lived loved these pictures celebrating the end to another step in your journey ! What an awesome team you have in TX - they look like a lot of fun!