Monday, December 14, 2015

Monday, December 14, 2016

Collin had his mri on Friday. Since he wasn't getting anesthesia and didn't need to fast, he went to school as he normally does. I tried to keep myself busy for two hours so I wasn't focused too much on the mri, but in that time I found out that my hairdresser and friend of over 20 years had suddenly passed away. She did my hair for my wedding, she brought me a meal when Neya was born, she gave Neya her first haircut, and she came to my house to cut my hair when Collin was sick. She's been a part of my life for a very long time, and I was completely caught off guard with the news. It left me feeling sad and unsettled. She will be missed.

Finally it was time for me to pick Collin up from school and take him to the hospital for his 11:15 appointment. We started in clinic, where they took his vital signs. They measured his height as 43.9". When it was last checked in October at the endocrinologist's office, it was 42.58". So as long as it was measured correctly both times, he's gained 1.32" in the nearly two months he's been taking growth hormone shots! I didn't expect it to work that quickly, but I'll take it!

Then we went to the room where the nurse would put an IV in for bloodwork and contrast dye for the mri. Collin remembers the four attempts at placing an IV for the growth hormone stim test over the summer, so he was nervous enough about getting the IV placed this time that he was shaking. Joanne took her time finding a good vein, and then had Holly come in to hold Collin's arm still and hold the shot blocker in place to help prevent pain. I held Collin's other hand, and had him look at me. When Joanne inserted the needle, Collin didn't even flinch! He didn't feel it. It took a few tries to get the needle into his vein because it moved around and seemed to disappear, but as Joanne was about to take the needle out to try again, she got it in his vein. Then she taped the IV up so it wouldn't come out, and we were on our way down to radiology.

They called us back and had me change Collin into hospital pjs. After Collin picked the movie he wanted to watch, we went into the room with the mri machine. They got Collin positioned on the table, and placed headphones over his ears and movie goggles over his eyes. The room was chilly, so they covered him with a heated blanket. They placed a cage type thing over his head (he couldn't see it because of the movie goggles), and they moved him into the tube part of the machine. They gave me headphones to put on, and let me stay next to the machine where I could hold on to his feet so he knew I was there. An mri is a loud and noisy procedure. There are a lot of banging, knocking, and beeping sounds throughout the test. I was holding on to Collin's foot, and then he moved it a couple of times. I thought he was just checking if I was there, but when I moved so I could see into the tube, I could see that he was crying. I started rubbing his legs and trying to talk to him, but he told me later he couldn't hear me. I was worried that he was moving too much, but they didn't say anything. Once they got the first set of images, they came in and injected the contrast into Collin's IV. Then the test resumed. Once again, Collin started crying when the noises got loud. I just kept rubbing his legs to try to comfort him. I have no idea how long the test took since I couldn't have my phone or watch with me. I don't think it took more than an hour, but to Collin it probably seemed like an eternity. Eventually the mri was finished, and they came in to get Collin out of the tube. They took off the movie goggles, headphones, and blanket, and I realized the poor kid was sweaty from head to toe. We told him what a great job he did, and on the way out of the room, we showed him some of the images they took. When I was helping him change back into his own clothes, he said to me, "I didn't care for the noise." It was all I could do not to laugh at the contrast between how calmly he said it, and how upset he had seemed during the scan.

We had a late lunch in the cafeteria, and then headed back to clinic for his 3:00 neurooncology appointment with the doctors. First, one of the neurosurgeons came in to do a quick exam, and he showed me the preliminary results on the computer: "No recurrent or residual tumor seen." Another clear scan! Collin has been off treatment for two years, and has had no evidence of disease for three years! Then, Dr. Comito came in to see us. With her was her right-hand woman, nurse practitioner Amy, as well as Dr. Barbour, who was a resident in 2010 when Collin was diagnosed. He had left Hershey to finish his fellowship, and is now back at Hershey as an attending pediatric oncologist. They examined Collin, got up to date on his endocrine and gastroenterology issues, how he's doing in school, etc. Now that we only go to clinic every few months, in a way it feels like a family reunion of sorts when we're there. We discussed moving Collin's mris to every six months now. It's a little scary, but it's time. It's progress. Another step in the right direction.

Then Dr. Comito told me something I never wanted to hear. She's leaving. There is a great opportunity waiting for her in New York. The minute she said it, I cried. I can't begin to describe what she means to me. She saved my son's life. She guided us through every single step of Collin's diagnosis, treatment, and relapses. She has been to our house to celebrate Collin's birthday, and she was there for his pre-school graduation. She has laughed and cried with me through the highs and lows of this "journey." She's part of our family, and her presence is reassuring. I'm going to miss her so, so much.

Collin and I finally got home around 5:00. We were both drained, exhausted. MRIs never get easier. There's too much at stake, and no matter how long things look good, they can change in an instant. I've seen it happen too many times. Collin is unsure if he wants to be awake for the next scan in six months, but says if he can wear earplugs under the headphones to better block the loud noise, he might think about it. In the meantime, we continue with growth hormone and reflux meds. We see the gastroenterologist in January, the endocrinologist in February, and return to clinic in March for a check-up with Dr. Barbour. We'll keep living in the moment, enjoying the little things, reveling in Collin's love of learning, and celebrating each step forward.

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