Saturday, April 2 - Maintenance Chemo Cycle 2, Day 13

I've been trying to type this update for the last week, but I just didn't seem to be able to get it done. I've been feeling down, but I can't put my finger on any one specific reason why. I'm worn out, physically, mentally, and emotionally. I wake up feeling just as tired as I did when I went to bed, and I struggle to find energy or motivation to get things done during the day. My memory is horrible, and I can't focus. Maybe the last year is finally catching up with me.

This weekend is one year since Collin's health started to decline. It was Easter weekend, and he started vomiting that Friday. By Saturday night we had him at the ER at Harrisburg Hospital, and he was admitted due to dehydration. He vomited a lot that weekend, but there were other kids in the hospital with the same symptoms, so we thought he had the same bug they had. It never dawned on me at the time that he didn't have a fever, and that maybe that should have been a clue that something else was wrong.

To look back over the last year is overwhelming for me. I know how close we came to losing Collin. I also know how far he's come, and just how blessed we are, and I'm thankful for that every day. But part of me is also grieving, for the child Collin would have been, and the normal childhood he deserved to have. For life not tainted by the fear that lurks, making part of me afraid for what the next week, month, or year might bring. I had what I think was an anxiety attack recently, where suddenly my heart was racing, I felt like I couldn't breathe, and I was crying, just terrified that something was going to go wrong. Luckily it passed pretty quickly. Then I read an article about how parents of children with cancer suffer from post traumatic stress. Makes sense to me.

Collin's clinic appointment last Monday went well. He weighed in at 13.3 k, which is 29.26 lbs. He has recently seemed even more interested in food, and is eating like he's making up for lost time. It's nice to see him eat like he used to before he got sick. He's also doing well using utensils to feed himself. This has helped cut down on some of his frequent meal time tantrums, which (as best as I can tell) are usually caused by difficulty communicating and frustration over not being able to do things himself. Unfortunately vomiting is still an issue; sometimes it will be caused by gagging after Collin tries to stuff too much in his mouth at one time, and other times it just happens out of the blue. Tuesday was one of those nights; there was not even a warning cough or gag, just a sudden large mess. No sooner did I get his bib changed, and it happened again. I gave up on washable bibs a long time ago; I use disposable Pampers Bibsters, and we now order them by the case. I have to simplify my life where I can.

Mornings seem to be a mad rush to get everyone up, ready, and out the door, no matter how early I get started or how organized I try to be, although truth be told lately I just keep getting out of bed too late. I manage to get Collin to all of his therapy appointments, clinic appointments, etc. We're usually out for a few hours at a time for appointments. Then I try to make sure he takes a nap. If he falls asleep in the car on the way home from therapies, etc., I will sit in the car in our driveway until he wakes up, because if I try to take him out of the car, he'll wake up and then not go back to sleep. Or, if we are home, he'll only nap on me or Bill, so his naptime isn't usually time I can use to get things done, but at least I value the little bit of down time it gives me. Then there's the eye patching. His eye is supposed to be patched for two to three consecutive hours each day. I don't patch him during his therapies because I don't want to interfere with them, which mean it usually has to be done after therapy, nap, and lunch. Once I put the eye patch on him, I have to stay right next to him and keep him occupied to make sure he doesn't take the patch off. If I go try to get a jump on dinner prep, wash dishes, etc., he takes the patch off. Before I know it, it's time to pick Neya up from school, make sure she gets her homework done, referee her and Collin, etc. Then when Bill gets home we tag team to get together something for dinner, get the kids bathed/showered and ready for bed, and I get myself ready for bed. I'm exhausted by 8:00 pm. Sometimes I go to sleep when the kids do, and other times I may watch some TV or read just to escape for a little while before I go to sleep. There are always things left unfinished, and there's never much time to do things just for fun. So if I take too long to answer email, send a thank you note, return a phone call, etc., please forgive me!

Collin is now on his second round of maintenance chemo. One of the chemo drugs he's back on is very constipating for him, which adds a new level of fun to our life. The Colace stool softener apparently tastes so bad that 90% of the time he'll vomit as soon as I give it to him, so now I'm trying to find the right dose and frequency of Miralax that will help him go without taking him to the other extreme. Who knew my life would become consumed with the finer points of...digestion?!

Collin also started another chemo drug Monday that he's not been on before, called Accutane. If it sounds familiar, that is because it is used at lower doses to treat acne. It's a pretty dangerous substance; if it is handled or taken by a pregnant woman, it can cause serious birth defects, miscarriage, or stillbirth. So, I have to wear gloves and handle it very carefully since I am still of childbearing age. It only comes in capsule form, so since Collin can't swallow pills like an adult could, we were given other hints about how to get the drug into him. I use a pin to poke a tiny hole in the capsule, then quickly put the capsule into a spoonful of some sort of food (oatmeal, yogurt, Nutella, etc.) Then Collin just chews it all up and swallows it. The drug is very sensitive to light and oxygen, so it has to be given quickly once the hole is poked in the capsule. It also has some heavy duty side effects. It causes dryness of skin, eyes, nasal passages, etc., so I have to regularly administer lubricating eye drops, chapstick, moisturizing lotion, and possibly saline nasal spray, and make sure he drinks enough fluids. It causes extreme sensitivity to sunlight, so he has to wear sunscreen, a hat, etc. when going outside and he shouldn't be out for long. It can also cause things like muscle pain, joint pain, severe headache, mood swings, etc. After watching me give the drug to Collin and asking questions about it, Neya said, "You mean it's like poison?! Why are you giving it to Collin?" Smart girl. It's hard to give your child something that can make them so miserable, even though you know there's not much choice.

Collin's next MRI is this coming Wednesday (I can't believe it's been three months already). I'm trying not to be too concerned, because really he's doing so amazingly well and there's no reason to think it will show anything negative, but there's always some anxiety related to MRIs. Then he has his next hearing test Thursday, and therapies Monday, Tuesday, and Friday. Looks like another full week ahead. Please say a prayer that the MRI continues to be clear. I'll do my best to post results as soon as I know them!