You are going on vacation. Flight and hotel are booked and you are headed for paradise. Or so you think. First, your luggage gets lost. Then, a storm hits and it dumps rain the entire trip. The roof of your Airbnb is leaking and your rental car got a flat tire in the middle of the jungle. Not what you were expecting, right? That was my feeling after checking into hotel Children’s for six days of intense chemotherapy. Yes, I knew how it all looked on paper. Yes, I knew it would not be easy. Yes, Theo is STILL a super hero. But oh boy, we were in for a doozy. Meanwhile, there is Theo with his Spider-man backpack, so excited to go back to the hospital like he’s on his way to a friend’s sleepover. Little did he know what was coming.
Where do I begin? First let me say that we are so incredibly grateful for Children’s Hospital, their staff, and everything they do for Theo. We are very fortunate to live in Seattle, five minutes away from one of the best hospitals in the world for treating leukemia. Everyone is doing their very best to help Theo be cancer free and healthy again. Remember, each person responds differently to treatment and there is no “one size fits all” plan. There is no way to predict how any person will respond to the chemotherapy. Not even the doctors know how Theo will feel. Their job is to lay out the treatment plan and manage it along the way. Like I said, I knew how this looked on paper. Each block of consolidation is one week of getting bombed with chemotherapy, followed with two weeks of recovery. There are three blocks. I made the assumption that because Theo had completed induction phase so well- getting used to the medicines, learning how to swallow pills, rarely getting sick, having an appetite – that he would continue to do the same in the next phase. To put it simply: I was optimistic. Once it started though, it felt like I was on a battle field with no armor, no plan of attack, left to surrender.
Ahhh, there is it. The infamous chart, schedule of drugs, the dreaded healer. Welcome to consolidation block #1. It starts with a lumber puncture (four different chemotherapy drugs delivered to the spinal fluid), which means sleepy time room! Woohoo! Theo, still in excited mode, not catching on to the struggle ahead. Then a quick and very dramatic downward spiral. Sorry kid, fun is over. Here come a lot of drugs. All at once. All guaranteed to make you feel awful for the next two weeks. All with potential serious side effects. Which means more drugs to counteract those side effects. Here come more pills, more icky tasting medicines, vitals and eye drops every four hours, and oh yeah, you will have to go pee with your IV pole attached to you every two to three hours during your six day stay. I know, not the sleepover party you were expecting. I won’t go into the details of everything that happened, every doctors meeting, every scheduled drug dose (even though I could because I wrote it all down). What I will tell you is this: It was hard. It sucked. It was sleep deprivation torture. Theo was never able to sleep for more than two hours at a time. Try giving a sleep deprived four year old eight (yes EIGHT) pills to swallow in the middle of the night. That’s when it hit me. When I realized what it would be like for those six days. (Insert photo: Me holding optimistic balloon. Optimistic balloon getting popped.) We tried wrapping pills in fruit roll-up. We tried liquid form (Bleh!) We tried crushing pills up with yogurt, mixing in flavored syrup, plugging the nose. It was like taking “water medicine” all over again. Hearing the word “medicine” once again, has caused immediate panic, anxiety, and eventually tears.
One morning, Theo was having an especially hard time. There was nothing I could say or do to make him take the sodium bicarbonate. There is a very specific schedule that must be followed and we were falling behind because of him stalling. He couldn’t stop crying, “oh this is not fun, this is so hard”. Meanwhile, the nurse was trying to help, the CNA was trying to take his vitals, and the physical therapist was by his bed waiting to take him to the gym for exercise. I just wanted to scream, to tell everyone to leave. Let Theo be, let him cry, let him breath!!! I needed to breath. Help!!!!
Luis to the rescue. He took a break from work just in time to give me a break. Only one parent is allowed in the hospital at a time so that’s how we do it, taking turns when we can. How do single parents survive this? Of course in the end Theo took his medicine and got through it. He had some mouth pain for a few days but luckily it never developed into mouth sores (side effect of Methotrexate). All of the chemotherapy was completed successfully. Theo, who by day six was fed up and bored, couldn’t have been more excited to go home. He told me he even missed the neighbor’s dogs. His tired body managed to produce a weak smile when he saw that his stuffies were all waiting for him with balloons and pizza for his welcome home party. It felt so good to be home. But the battle was not over. Wait, what? I know, we thought recovery meant feeling better… not worse. We all thought the hardest part was behind us. Hold on folks, we’re not out of the woods yet!
Our first morning at home, Theo woke up nauseous and shaking like a leaf. He couldn’t even hold a spoon. I will again, save you the details of how many times Theo got sick… all over himself, all over us, the bed, the floor, the couch… for the next ten days. The weakness and shaking slowly improved day by day. The frequency of getting sick also decreased as the days progressed but the anguish and stress of it did not subside. Giving him anti-nausea medication every three to four hours didn’t seem to help either. The getting sick is not even the hardest part though. Yeah, it sucks to have to clean up if you don’t grab a bag in time but oh well, it’s just blankets and clothes. They can be washed (three times with extra fabric softener of course). The hardest part is having to take the medicine ALL OVER AGAIN because it never stayed down. The last 30 minutes of struggling, stalling, and crying – all for nothing. Each time Theo gets sick feels like a crack in my heart. He sees our worry and pain. He knows he just lost all the good nutritious food he ate and needs. One night he even apologized after getting sick on the bedroom floor. He told us that he “woke up and couldn’t find a puke bag in time and didn’t have time to yell for us”. That certainly left a huge dent in my heart. It got to the point where I stopped caring so much what he ate. Just eat kid! Enjoy your food and hope that it stays down. His insides were all a mess. Slowly recovering just so he can get bombed with chemotherapy and go through this all over again in consolidation block #2. The next block I’m told is even more intense. Great. What am I supposed to do again? Oh yeah… breath!!!
What do you do when you fall off a horse? Don’t ask me, I haven’t ridden one in years! Oh I get it… you get back on!! That’s right, no bad attitudes here. The key is to stay positive. Theo has finished one block and has two more to go. Soon this will pass. Afterall, this is a journey. There is bound to be ups and downs, twists and turns. Now we know what to expect and are better prepared. I have my sword and shield, and a stack of puke bags in every corner of the house, every purse and in the car. And when I need a break, I will take one. I am not super woman. I am Kelly, a mom, who just like any other parent I know, is doing all I can to take care of my son. We love our children and we want the best for them. That is what makes us all amazing. Taking care of Theo is a lot of work and surely exhausting at times. He doesn’t need a teacher or an entertainer right now. He needs his mama and papa (and Bobo the monkey). Happiness is our super power weapon, it breaks through our anger and despair. We have a few days of feeling good until we head back to the hospital. So if all we do is lay in bed all day talking to his stuffies, sharing rhymes, and playing his favorite Spider-man game then hey… as long as Theo is happy, I’m happy.
Today I think I’ll read a book, or maybe two or three, about the Roman empire and Greek mythology. And then I’ll learn a language because I have a wish, to one day live in Mexico speaking perfect Spanish. Later I’ll practice yoga and while I’m on a run, put homemade bread in the oven to bake so when I return it’s done. Then I’ll make that costume Theo asked me to sew, but first a science lesson of making potions that bubble fizzle and flow. Of course I’ll do some gardening, throw those weeds in the yard waste bin. My car could also use a washing. I can easily squeeze that in. Another day in lock down, another productive day… On second thought I think I’ll just stay in bed and dream dream dream away.
“From the cradle to the grave is a school, so if what we call problems are lessons, we see life differently” -Facundo Cabral
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