Tuesday, April 7, 2015

Tuesday, April 7, 2015

So this month marks five years since Collin was originally diagnosed with a brain tumor. This year April seems to be weighing on me more than the last few years. I think it's because Easter fell on the same weekend five years ago. I remember five years ago the weather was nice, and the four of us had gone to the playground. Collin didn't seem quite himself, and that night he started throwing up. The vomiting continued for 24 hours, and the next night we took him to the emergency room to be evaluated. He was dehydrated, so he was admitted, and Collin and I spent Easter weekend in the hospital. We thought he had a stomach bug. Little did we know that that was just the beginning, and life as we knew it was about to fall apart. Last Wednesday evening, Collin started throwing up before he went to bed. He also threw up in his sleep a few hours later. He didn't have a fever, and it brought me back to that night five years ago. I had what I guess was a panic attack; I was crying, shaking, and felt very anxious. It wasn't until he started running a low-grade fever on Thursday that I felt more relaxed. I don't often have moments where ptsd sends me into a tailspin, but it happens occasionally, and it's not fun. As it turns out, Collin must have had a 24 hour bug; by Friday he was better. We enjoyed our Easter weekend, and I kept thinking sbout how lucky we are that Collin is still here, and doing as well as he is. I don't ever take that for granted.

Yesterday afternoon Collin was tired, and after lunch he told me he didn't feel well. I took his temperature, and it was 101.8. He had no other symptoms of being sick, just a fever and fatigue. Of course in the back of my cancer-mom mind, I was thinking "Aren't these symptoms of leukemia? He's at risk of secondary cancers because of all the chemo he's already had; does this mean anything?" My mind is not a very peaceful place anymore. At least I know that every other parent of a child who's had cancer does the same thing, so I'm in good company. Today he seems to feel fine but he still had a low temperature when he woke up, so I had to keep him home from school today. I did take him to his GI appointment yesterday even though he didn't feel well because his reflux is still a problem. Some days he seems ok, and other days he throws up and/or complains of burning in his chest. He's been taking Prevacid which reduces the amount of stomach acid produced, and Carafate which coats the esophagus and stomach to protect them from the acid. Dr. Qureshi has decided to continue the Carafate, stop the Prevacid, and try a different medication called Bethanecol. This drug is supposed to increase the rate that the acid is emptied from the stomach. I'll touch base with him in a month, and he'll see Collin again in July, at which point he may discuss doing another endoscopy to see how things look.

Collin's TSS, Jordan, has been working with him for a little over two weeks now. He spends the morning in school with Collin, and facilitates interaction with the other kids in the classroom. He does a good job encouraging Collin to do things that are outside his comfort zone, which is harder for me to do as his mom (and also I'm not in the classroom every day), and he does it in a way that is compassionate. I know he's in good hands with Jordan, and Collin enjoys spending time with him.

Collin's next MRI is scheduled for April 15. As soon as I know results, I'll post them. If you don't mind, please send prayers, postive thoughts, etc. that there will still be no evidence of disease. Thank you!

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