An Adventure Through Tall Grass

Day 1

Last night got a little rough. There were meds every few hours and getting Brayden to take them wasn’t easy. The liquids are terrible and always in large enough quantities that he has to take 2 or 3 swallows. Even chasing it immediately with water leaves him crying hysterically at having to finish the dose. It’s one thing to get your kid to take Nyquil  in one shot and a whole other thing to get them to take this stuff multiple shots, and then do it again in a few hours once they know just how bad it is. It is flavored, but spraying perfume on poo still leaves you with poo. 

The hard thing about this is that Brayden didn’t really feel sick before, so telling him the medicine is to make him better just doesn’t register. He knows what is wrong and has had it explained to him, both by us and by the hospital child advocate, but his brain can’t understand at 11pm why he is waking up to take a horrible medicine to ‘make him better’ when he didn’t feel crappy until now. Add in that the medicine makes him feel worse, and all of your bargaining power goes out the window. And it does make him feel worse. I have never seen my son fight having to take meds or do what he is asked like I did late last night, and all I wanted to do was be able to take it for him. But I can’t. So, then I want to cry for him… but I can’t do that either. The minute it looks like giving him the meds hurts me, there is no way he is going to trust that it isn’t going to hurt him. So, I have to be gentle until I have to be stern so that I can get back to being gentle again. And it blows for a lack of better words. 

He stopped wanting food after eating half a piece of pizza at about 1pm. He felt okay after that little dose of chemo and while the pain meds were still running through his system from the spinal tap and marrow draw, so he was bubbly and talkative. But by 6pm it was clear he was hitting the wall. The ‘bad’ meds were catching up to him and the ‘good’ meds were wearing off. He was asleep by 7, but up every hour either because we forced him up for medications or because his spinal and marrow draw sites were hurting him. He also cannot go to the bathroom, so he has to pee bedside into a container (for easy testing). His back was hurting him so much that he couldn’t even stand to do that. We made it work, but not without many tears. On another note, the medications make his urine smell like rotten eggs, so some light teasing about “stinky pee” lightened the mood up a little.

His stomach started to get upset, so the pepto-pink tub made its appearance at the end of the bed ‘just in case’. Thankfully it wasn’t needed. At about 11pm, and after his last dose of liquid hell, I crawled into bed with him. They were able to check his vitals and flush his picc line without waking him for the rest of the night, and he slept better with me in bed with him. In fact, I have spent most of my time next to him since then.

7am came and brought back the cheerful character with it. So, it was nice to see him smiling and eating and feeling good. Throughout the day the children’s oncology wing had various things going on for Easter. We were visited by Shamu and a dolphin, both nearly too big to fit in Brayden’s little room. There was an easter egg hunt on the floor too, but Brayden’s back and hip were painful, so they came into his room and hid them for him instead. Everyone here is just amazing. I guess you have to be some kind of amazing to come to work every day with little ones fighting cancer and put a smile on their face, and they do it well. They had too therapy dogs in the wing too, though I don’t think they came to see Brayden. 

He is classified as neutropenic, meaning that he is highly susceptible to infection and illness. That means there are lots of restrictions on what and who can and can’t come into his room, and I believe the dogs skipped past him.  There are also lots of food restrictions (http://www.livestrong.com/article/354826-neutropenic-precautions-in-cancer-patients/ ) and rules about where he can eat.

But the early part of the day was pretty relaxed. Lots of TV and game playing, some eating, and some bathing. The child advocate came in and spoke with him about cancer and what it means, reinforcing that it is not his or anyone else’s fault. I think it is kind of lost on him since he still doesn’t feel super terrible all the time. It’s like trying to explain politics to a 7 year old, they just don’t relate to it yet, so it is just another thing an adult is telling them about. He did pay more attention when she mentioned that his hair will probably fall out, but once he was assured it will come back he was back to glancing at the tv and being 7 years old.

It is all still kind of surreal and disconnected sometimes. He looks okay right now and is chipper much of the time, so you get comfortable a little bit, and then discussions of hair falling out, when to rush him back to the hospital, and the chemo plan happen and it all floods right back. My son has cancer, and even when he gets out of the hospital, he will have cancer. And when he goes back to school he will have cancer. It isn’t the flu. Rollercoaster ride doesn’t even begin to explain what it is like to hit that fact throughout the day.

I got to meet with the doctor and we found out his spinal test was negative, which is awesome. We won’t get the chromosomal test (marrow) until next week. His treatment plan may need to be adjusted depending on those results. He may be released Sunday, but will need to be back Thursday for chemo. It’s worrisome to know he will be out in the world when he is dealing with a compromised immune system, and even the doctor said he will most definitely get an infection at some point, but I am sure a kid’s morale stays stronger when they get to go home… and that’s a big part of the fight.

They were able to switch his meds to pill form today, so that is a plus. He is getting better at taking them and there is less fight by about 400%, though the pills are not coated and he hasn’t learned to do it fast yet, so it is still not the highlight of the day. He was given something for upset tummy in the early afternoon. Then they came in to give him his first chemo treatment.

The seriousness of that medication is immediately evident when they bring in gowns, gloves, and a tray of prep items. There is a second person who comes in and has to witness all of the different checks and stages of the process, which is just an IV push but is suddenly much more complicated and involved. There are checks and times recorded, and precautions to take. Brayden couldn’t be wiggling like he would be normally without too much consequence or extra work on the nurse’s part to get whatever he needed in his line. He had to lay still and flat. They draped him to be sure that if any of the medication dripped, it wouldn’t touch his skin. Then, after they were done, they instructed me to start wearing gloves when helping him go to the bathroom, because my son’s bodily fluids are now harmful to me. My son’s blood and urine are now poisonous. Toxic.

I took a picture so it could be a smiley moment rather than a scary one, since all of the extra stuff and palpable seriousness was making Brayden visibly nervous. So, chemo #1, Day 1 is documented with a smile, rather than a crappy memory. After that was done, she came back later with his steroid, which he would need to get one other time before midnight. It will cut down on inflammation from the drugs, and a side benefit will be that his appetite will get stronger (unless he feels sick obviously). Steroids can also result in them wetting the bed, so that is a concern given the circumstances.

By 6pm, he was flying low again… quiet, droopy eyed, and worn out. It is hard to see a kid who is normally wired to the max until the wee hours of the morning if left to his own devices suddenly exhausted by 6pm. I stayed until about 7pm, but last night was Joe’s night to stay with him while I went to hang at the Ronald McDonald house. Which, might I add, is a great place. Everyone is so nice and everything you need is provided, though donations are welcome and encouraged. It is such a blessing to have a place to go to do laundry, shower (Brayden’s shower is a bit on the wee side), and sleep on a bed not meant for a child, and it is just steps away from the hospital. However, I can't help but prefer my spot on that little bed, where I am there if he needs me, to being even just a little ways away.

I will have to find a place in Daytona soon, since he may be able to leave by Monday. There are some programs that may be able to help with costs, which would be amazing since I am still paying for everything back in Ohio. But the first month is a given as far as treatment goes, so no matter how good tests come back or how well he does, I am here for at least that long.

Here is some info on ALL, if you haven’t already googled it to death: http://www.childrensoncologygroup.org/index.php/acute-lymphoblastic-leukemia