We have tried to dodge growth hormone shots for Gavin for quite some time now. It just made us sick to think about it. First of all, the idea of making Gavin take a shot 6 nights a week wasn't so appealing. But I know he would soon grow accustomed to it and do fine. More than the physical act was the fear that if any cancer cells were floating around, adding growth hormone to the mix could serve as a fertilizer. And I think I've made it clear that AT/RT needs no fertilization. However, two things remain. 1) Most kids that have been through craniospinal radiation end up on growth hormones because of damage done to the pituitary gland. 2) Gavin's not growing on his own.
Last week we moved one step closer to starting growth hormones. Gavin completed a growth hormone stimulation test. Insurance required it. Other labs that pointed directly to growth failure and the fact that Gavin's just not growing weren't sufficient for them. In their defense, it does cost around $35,000 per year for growth hormone shots. I can see where they don't want to dole them out to just anyone. However, the test seemed a bit redundant for a kid with Gavin's history. I'm just sayin'.
The test was completed in the Children's Legacy CCBD (cancer clinic). Our old stomping grounds, so to speak. It was done back in the infusion area, where Gavin received lots of outpatient chemo as well as blood and platelet transfusions back in the day. We know the nurses there all too well and love them like family. While I wish Gavin was growing on his own, I must say it was refreshing to be in an infusion room for something other than chemo or a transfusion.
One potential side effect to the test is nausea. The nurses helped me make certain that Gavin had Zofran ordered because of his significant history with nausea while he was on treatment. However, even with our preventative efforts, Gavin became nauseated. It was a bit all to familiar to see him suddenly seem sick. And he began to cry as he said, "Mommy, the medicine didn't work. I feel icky!" More Zofran was given and he seemed all better. The test ended and we headed home. But Gavin became nauseated once more, hours after when we were told the nausea should have gone away. (Leave it to Gavin on that one! Poor guy!) He did get sick, but additional Zofran (from a brand new bottle I still had that hadn't yet expired) stopped the nausea. I guess that is one perk to having a near pharmacy in your house. Prepared like a cub scout, I tell you!
We don't know the results of the growth hormone stimulation test yet. The doctor suspected we'd find complete failure, which means Gavin's body is not producing any growth hormones. For now we wait not so much for the test results as for insurance to approve the shots.
I explained on the way to the clinic last week in very simple terms what we were testing for. Garrett wondered if he would need growth hormones as well. So, I had to explain in simple terms once more why Gavin needed the hormones and Garrett did not. After my explanation, Gavin sighed and said, "I'm not simple." So we talked about that a bit in order to make it seem like less of a bad thing.
"I'm not simple." It sounded so very much like what we used to frequently hear from the specialists when they were scratching their heads about how to make Gavin feel better while on treatment. "Gavin is a complicated case." I'm just so happy that these days he's not so complicated. Sure, he's complicated compared to the average 6 year old. But compared to a brain tumor survivor, he's not so complicated. The fact that he's alive after AT/RT is amazing. I should never allow myself to forget that. And the side effects from treatment that we see now aren't really all that shocking. They were on the 12-page consent form we signed off on before treatment started. While we prayed for none of them, the ones that have manifested aren't that complicated given his history. And so I am encouraged.
Gavin went on to ask if we would always go to the hospital for the medicine that would help him grow. I told him that we would take it at home. He seemed quite satisfied with that response. How bummed he will be when he learns that the "at home" version also means regular shots. But he is here with us. We have options to help him grow. And he's a brave little boy. So we'll move over that hump much like the others. And he will be just fine.
Last week we also took a trip down to Houston to have Gavin's annual appointment with his neuro-opthalmologist (very specialized eye doctor) at Texas Children's Hospital. We feel she's worth the drive, so we keep her on board. The boys and I also got to spend the night with my pal Joy and her family, which was a treat! The kids had such a good time. And I loved getting to catch up with Joy in her new surroundings.
Gavin's glasses prescription remains practically unchanged, which is better than worsening, right? However, I did learn that Gavin has cataracts. Yes, you read it right. Cataracts. It threw me for a loop as well. She said it's just in one eye and it is quite mild at this point. It is possible that he's had them all along but is just now cooperating well enough in her exams to see them. But, it's most likely a result of the cancer treatment. At this point, nothing needs to be done for the cataracts. We'll see how they look at the next appointment. Last year's appointment revealed that Gavin has some red-green color blindness. That's genetic and completely unrelated to his cancer treatment. This year we learn about cataracts. Odd. Hopefully next year's appointment will reveal nothing new. ;)
Obviously, we are filled with joy that Gavin's last MRI was clear. Thank you again to those of you that follow this blog and lift up Gavin in protective prayer. I received many comments around MRI time from those of you that feel you don't really "know" me, but wanted to let me know you were praying. Please know that I am grateful for all that read this blog. It's public so by no means only meant for those that I know outside of Bloggyland. And I love to hear from all of you.
Oh and one more update. I donated platelets again last week. Unlike last time , I didn't shed a single tear this time around. It was more of the warm fuzzies that I had hoped for the first time. I am scheduled to donate again very soon. I think it's going to become something I do regularly. Tell me, have you donated any blood products lately? If not, you should. Kids like Gavin depend on your generosity to survive while on cancer treatment. Seriously. Go donate!!