The sun is up, but it is still early. The birds have taken a break from chirping outside our bedroom window. I can tell by the brightness of the room and the stillness outside that it is sometime after 6am but not yet 7am. Theo is sitting up in bed. I can feel his eyes on me. I can sense that he wants something. I open my eyes and give him a smile. Yep, he is looking right at me. Food is on his mind. “Toasties and ramen… mmmm”, he says. Oh, good morning steroid brain.
Welcome to the next phase, Delayed Intensification #1 Part 1. I gotta say, so far so good (quick, someone give me a piece of wood to knock on). To be honest, we weren’t sure what to expect. Theo’s doctor asked me how I was doing during our visit on the last day of Consolidation. With a great big smile and sigh of relief I told her how happy I was that it was over. I was so relieved we were passed what so far had seemed to be the worst. The look she gave me in response was scary, like I was crazy. You know that look. You walk into a room of people who have just been told horrible news and there you are, all cheery and singing about what a great day it is. What’s with the long faces? Is it something I said? Well, apparently, for most of her patients, Delayed Intensification IS the hardest phase. The phase when they get fevers and have to be admitted, when they experience intense nausea. When they feel their absolute worst. But remember, Theo’s treatment is more intense and longer than average because of the Philadelphia chromosome. Perspective. Theo had it so rough during Consolidation that anything less intense feels easy! Whatever treatment the average patient gets, Theo gets it harder and longer. For example: Theo gets two extra weeks of chemotherapy in this phase. Theo also gets Delayed Intensification TWICE! So yes, for some patients, this may be the hardest, but for my super hero, Theo?? This is like working on a 100 piece puzzle after completing a 500 piece one… a piece of cake.
Okay, maybe not quite that easy, but easier for sure. Now you are probably wondering, what does Delayed Intensification (Part 1) look like anyways? For starters, it’s all done in clinic. (hooray!) Theo only has appointments on Tuesdays. ONE day a week (woohoo!) Of course, there will be other appointments further along to check for blood or platelets as his numbers drop. But for the most part, there is very little time spent at the hospital so far. So what do we do all day?? It depends on how Theo is feeling. How much energy he has. On days following his chemotherapy, he likes to “take it easy” doing puzzles (Theo is a HUGE fan of puzzles), playing his Spider-man video game, or talking to his stuffies in bed. He also naps quite a bit. No wonder. Chemotherapy knocks you out! On top of that, he’s gets anti-nausea meds every four hours for the first three days after (works like a charm). We alternate Zofran and Benadryl-Regaln every four hours. He tells me almost daily how happy he is that he is not throwing up anymore and that he does not have to taste the “icky” medicine. That’s a WIN! Then there are days when he gets a burst of energy. He wants to walk through Ravenna Park looking for ingredients to make soup for his sick stuffies. He wants to stroll to the icecream store, he wants to have a dance party. Earlier this week he went for a bike ride up and down the street. And get this: last week he walked home from the hospital, then ran up the hill to our house!! I couldn’t believe it. It wasn’t after a chemotherapy visit, we just went to go pick up meds from the pharmacy. We took our time collecting “art supplies” for our next art project. The sun was out. We had nothing but time. I swear a blue bird was on my shoulder. I felt like Mary Poppins when she jumps into the painting. All we needed was a carousel to magically appear and our walk would be complete. These bursts of energy are not long lasting, but long enough to see Theo get out and enjoy a little taste of summer. Delicious!
Whoa dude, what is that? I’m going to tell you what happens when we go into clinic on Tuesdays for chemotherapy. Don’t get too excited, Russell Wilson has yet to appear and take a picture with Theo. Everything is so “normal” to us, I forget to write much about it. The first appointment is getting his “button” on, aka getting accessed. This also happens so often that it has become uneventful for Theo. Basically every child being treated for leukemia has a port that has been surgically placed under the skin next to their heart. This is the easiest way to draw blood or give chemotherapy meds or transfusions. Chemotherapy meds cannot be given through a regular IV, as they can rupture veins. When patients are not accessed, there is no tubing hanging outside of their body. There is only a bump that you can feel under the skin. Patients can shower, swim, and do other regular activities without having to worry about covering up the access site. To be accessed means to insert a needle, with a tube attached, into the port through the skin (as seen above). Ouch! Well, not exactly. A numbing cream (Lidocaine) is placed on top of the access site one hour or more prior to the needle going in. For some kids that is enough, for others… not even close. Needles can be scary. I have seen plenty of grown adults FREAK OUT over a tiny needle. (Laughing gas anyone?) These kiddos have to get a needle inserted into their chest multiple times a week for years!! Thank goodness for Ativan (anti-anxiety med). And if that is still not enough, Children’s Hospital obviously is prepared with a team of friendly, comforting, well trained specialists who are there to help kids get through moments like these. They come armored with iPads, toys, stickers, games, you name it! Anything and everything you can think of to keep a child distracted and calm during times of stress or anxiety. Child Life, we love you.
Okay, so where was I? Oh yes. While Theo gets accessed he stays preoccupied talking to his stuffies or “the dudes” (Teenage Mutant Ninja Turtles) about what is happening. He actually likes watching and enjoys telling his stuffies what is going on to keep them calm. In fact, the only part he doesn’t like is getting the numbing cream on because it’s cold! It takes a total of about five minutes to access, draw blood, and cover the access site. The blood sample gets sent to the lab and we wait in the waiting room until our appointment with Theo’s doctor. About 30 minutes to an hour later we head back to another room after getting height and weight measured. We meet with the doctor to go over what’s happening, review questions, and so they can give Theo a physical exam. Next we head to the Infusion Clinic. That’s where the magic happens. Theo gets comfy in his big chair, we draw the curtain, and hang out for however long until the chemotherapy meds are done getting pumped into his body. That’s a wrap! And so that is what our Tuesdays look like… for the first five weeks anyhow. There are two parts to Delayed Intensification. Part one starts with oral steroids (Dexamethasone) at home and a lumber puncture of Intrathecal Methotrexate, you know, the one that almost came one week early. The following week he gets Pegasparagase (PEG). *PEG is scary. There is a 25% chance of a patient having a strong allergic reaction that can land you in the ER. Wow. That’s one out of every four kids! It has been known to cause other bad reactions as well. Unfortunately it is also a key drug for treating leukemia and other options are not as accessible or easy to give.* Theo gets a cocktail of other chemotherapy meds (minus Dexrazoxane of course – the one Theo is ALLERGIC to!) Vincristine is the one that makes hair fall out. Doxorubicin makes his pee orange-red. Both cause nausea. Ugh… and did I mention? Yep, steroids… again. Theo’s neutrophils will drop slowly (like the title says, “Delayed”), not like in Consolidation when it was sudden and extreme. So we have to be mindful of that. His energy will likely decline slowly over these next few weeks. He definitely needs NAUSEA CONTROL. Think we finally got it? Oh yeah, we got it. And one more thing. Theo needs FOOD. Not just any food. I’m talking STEROID FOOD. Fee-Fi-Fo-Fum, I smell a hungry one!!
Theo is not himself when he’s on steroids. NO ONE is them self while on steroids! Remember Induction phase? That was 28 days straight of steroids. Theo was a monster. At least this time around we get some breaks. It alternates, one week on, one week off. During Consolidation he was also taking steroids, but only for five days during each block. I’ve mentioned before that Theo is a good eater. This is different. This is strange. This is not “normal” eating. There are no meals, no set time for breakfast, lunch, and dinner. It is a non-stop guessing game of what Theo wants to eat next. An all… day… long… eating marathon. It’s the ONLY thing on his mind. Theo is with food, like our dog Manu is with his ball. Locked. Obsessed. One track mind. His cravings have changed over the weeks. First it was just plain white rice and cucumber slices. Then is was rice paper (I know, what?!?). Then he only wanted soup. The most recent one was ramen and baguette slices toasted with butter and spices, aka toasties. One day at his clinic visit, he repeated himself (I’m not kidding) at least 20 times, “After my appointment I’m going to go home and eat ramen, and an enchilada with delicious beans and rice.” Every staff member in clinic that day heard about it. We went to the lake on a sunny morning. “Theo, look at Mt. Rainier!” Theo, completely ignoring the view, responded, “I’m trying to think of what else I’m going to eat with my ramen when we get home.” What’s even more frustrating is that most of the time he doesn’t even know what he wants! Theo starts every morning talking about how hungry he is (super cranky) and how he wants to eat “delicious food”. So I ask him, “What do you want?” I give him almost every option of food possible. He yells back in tears, “I don’t know! Stop asking me what I want to eat! I’m so frustrated!” So what do we do? We wait until he decides. But he is NEVER satisfied. What ends up happening is that we bring him dish after dish, meal after meal. Sometimes we get it right and he eats it all. It feels so good to see him smile and be happy. To see him eat and enjoy that very specific food that he’s been craving and asking for. But sometimes he eats maybe two or three bites then says he is “just not that into it” and would like to eat “other delicious food”. Or obsesses about eating something (say a cheeseburger) non-stop for hours. He finally gets it, takes a bite, then says, “no thanks. What else is there to eat?” Seriously?!? Oh believe me. We’ve tried every approach. When I was growing up the rule was “take all you want, but eat all you take”. Wasting food was NOT an option. We still follow that rule, which means we eat a lot of his leftovers, or at least try to. For Luis, seeing Theo hungry and desperate for food triggers an emotional response he had buried deep within him. He grew up a hungry kid and food was always on his mind. Although he knows it’s illogical to compare the two, it makes him sad and angry. He will therefore go to the end of the world to find the ingredients to satisfy Theo’s cravings. It’s so difficult to not let it bother us and get to us emotionally. We know this is not our Theo. This is Theo on steroids.
But… GUESS WHAT?? He’s eating, for goodness sake, he’s eating!! He’s not getting feeds through the feeding pump! It’s been two glorious weeks of him not having that pump attached to his NG tube. We have boxes of unopened feeding tubes and formula and I plan to keep it that way. He is eating more than enough and gaining weight every week. The best part? Theo is still my sweet boy who likes to snuggle at night. He still misses me when I have been away for an entire hour. He still gives me hugs out of the blue because he can tell I am stressed. He still likes to tell the silliest jokes and the greatest stories. He hasn’t gone completely steroid monster on us. One day when talking about food and helping him decide what to eat, he yelled back at me. He was frustrated as usual. So was I and I was not having it. I scolded him for talking back and yelling at me. Crying he said to me, “I’m sorry Mama. Sometimes when I am frustrated I forget my manners.” Oh Theo, you truly are the sweetest. I am embarrassed. I am an adult who cannot admit that and you are only five. We are proud of you, so proud. Keep learning, keep growing, keep smiling, keep fighting!!
Today there will be no rush, we will move as slow as a snail. We will wake up late then take a walk, picking wild flowers along the trail. We’ll have a picnic at the park, sitting on the soft green grass. Play Simon says, then charades, having fun as we let the time pass. We’ll share stories of wild adventures, some true and some fake. Telling jokes so funny that we’ll roll around and laugh until our bellies ache. We’ll watch the sky turn purple and pink as the sun begins to set. And dream of more days like today, this feeling… I will never forget.
“People who love to eat are always the best people” -Julia Child