Too Much Cookiness

We’ve all been there. Uncomfortably full with the top button of our pants undone while slipping into a food coma. Your eyes were bigger then your stomach. You knew it was probably not a good idea to keep eating but you did it anyways. Telling yourself to stop but you couldn’t because it was just too good! Often regretting it later. I know, I’ve been there way too many times. Overly eager to sample the fancy French cheese my mom picked up for Sunday dinner, serving myself that extra slice of cake (because who knows when I’ll get to eat this cake again), grazing the table for last nibbles at a potluck telling myself this was the last bite. Since I was a kid, I always had a reputation of being able to eat an enormous amount of food, although my skinny bony body showed otherwise (genes). I guess that’s how the Murray family decided to call me “Hollow-leg Bendock”. Yes, I have an appetite. But today I am FULL. In more ways than one. At the end of 2019, I was hungry. I was ready for a smorgasbord of adventures and new ideas. What I got was the leftovers that were thrown into the dumpster. I am full of it all. Full of election news. Full of the pandemic. Full of CANCER. Now, Delayed Intensification #2 feels like a third helping at a holiday dinner when my belly is about to burst. Ugh, please no more!!

Delayed Intensification #2 Part 1 is almost over. Theo had his last blast of chemotherapy along with a transfusion of platelets this past Tuesday. If (and that’s a huge IF) his neutrophils are above 500 and his platelets are above 50,000 he will begin Part 2 on December 1st. Highly unlikely though. Before his last infusion his neutrophils were 62. And after getting more chemo they will go down even more. His platelets were 26,000. The transfusion gave them a boost for now but they will also likely tank again. What does this all mean? A delay of maybe one week, maybe two… or even three. It all depends on when his bone marrow recovers, which will raise the blood counts to reach those magic numbers. As much as we want for this phase to be over, we also know that Theo could use a much needed break. A break from being kicked down and turned to mush. A break from being looped up on anti-nausea meds. A break from mysterious unpredictable pain and tummy troubles.

Theo playing his new Spider-Man game

Theo had a pretty good start to Part 1. Most days he had enough energy to play outside, go for a walk, do his school lessons, even crack a few jokes here and there. What do you call a dinosaur that snores? A dino-snore!!! Haha, that one is our new favorite. There was an obvious and sudden drop in energy the day Part 1 started. He wasn’t quite 100%, he had his moments of lethargy. But hey, it’s not like we had places to go or people to see. So the majority of our days have been spent in the bedroom, where Theo is most comfortable. We discovered a new favorite low energy, indoor activity this past month. There is a YouTube channel called Art For Kids Hub. It’s a fun way for kids to learn how to draw cute, silly, and popular characters. Some days he would draw three to four characters. We also made a ton of water color art (covered in glitter of course). Painting and drawing with Theo is healing and relaxing. Good for our souls. A wonderful and very talented artist I know made a Spider-Man painting for Theo. It is SO cool. Theo has been so inspired and motivated to make cool beautiful art just like it. I have no doubt he will. His other obsession? The new Spider-Man video game with Miles Morales. Luis and Theo could easily spend the entire day playing together. I’m not exaggerating when I tell you that when they are playing, you can hear their screams and laughs from a mile away. There is so much excitement the entire house shakes. It is awesome. It is their time, their thing together. Theo tries to teach me how to play (seriously, he saves the last bad guy for me then tells me which buttons to press) but it’s not as fun as it is with Papa. When Theo was feeling good, it was important to act fast, take advantage of it before it went away. We knew it wouldn’t last. Just as expected, these past two weeks have be a fast decline. Watching our boy slowly disappear again. Watching the lights grow dim, his legs grow weak, and his energy fade away.

Painting with Bobo

Have you ever pooped your pants? I mean a real #2, not just a streak, out in public as a grown child or adult who does not need diapers? I personally have not but can only imagine how embarrassing and horrible it must feel. Theo has pooped his pants A LOT during his treatment but always while in the comfort of home or in the hospital, never out in public. Well… it happened. It was late in the morning and Theo was feeling good. We had just finished playing soccer outside but I could tell he wasn’t ready to go inside, so we went for a walk… a long walk. He wanted to keep going and I was too excited to stop him. I was so happy that he had the energy to go on a real walk with me, enjoying a non rainy day, fresh air, and silly conversation. So we ventured on. I suddenly noticed his steps getting shorter and slower. Uh oh… and just like that, it hit him. All of a sudden Theo needed to poop, “right now!” he yelled at me. Well crap. There was literally no where to go, not even a bush to hide behind. Before I knew it I saw the carrot shape push out the back of his pants. It was too late to do anything but walk home nice and slow. I must say. Theo handled it like a champ. He didn’t cry or scream. He felt awful though. He kept saying, “I’m sorry, I’m, so embarrassed.” Again, I can only imagine.

After that we decided to stop going on walks. Theo’s bowl movements became so sudden and urgent that it was too dangerous to be more than 100 feet away from a toilet. We can’t even leave him alone downstairs by himself for more than five minutes. There are times when he says he feels fine and looks completely comfortable. Next thing we know there is a look of panic because he needs to go to the bathroom, immediately. Sometimes he barely makes it. In fact, Theo’s bowl movements have been the HOT topic of discussion in our household these past several weeks. I apologize if you are eating, I don’t mean to go into so much detail with you, it’s just the way it is for us these days. So much so that, yes, I even have a journal to keep track of his bathroom events. This is why. Having “normal” stool is extremely important. If his stool is too hard, Theo will have intense painful tummy cramps (he calls gas bubbles) followed by painful pooping. Many of the medicines cause constipation. Theo has cried many times while sitting on the toilet because his stool is so hard and it hurts so bad. On the other hand, Theo also takes medicine that can cause diarrhea, also dangerous. Diarrhea can be a sign of infection so it is taken very seriously. One week he had multiple episodes of diarrhea (which I will explain later), so we were ordered to get a stool sample and deliver it to the hospital lab. I know… ewww gross. Well, it comes with the territory and to be honest, Luis and I are both so used to it. None of it bothers us anymore. He gets Miralax (a stool softener) once a day. When his stool is off balance, it is impossible to know how much to give. It’s a guessing game. Tummy cramps? Give more and hope it’s not too late. Runny stool? Back off. And then hope it all works out. Hopefully it’s not because of a more serious infection or digestion issue going on. Theo has had so many accidents that during times like these he is constantly concerned about having poop in his underwear. He asks us to check often throughout the day and sometimes in the middle of the night. Again, we don’t mind. Theo’s five year old bum is still the cutest in my opinion.

So now let me explain about the episodes that lead to the stool sample. No, I do not love writing about Theo’s stool, but this is important. I’ll just get straight to it: Imatinib. Oh how I wish you never came into our lives, you trouble making, stress causing, extremely expensive drug (that we also love because it will help save Theo’s life)!! Always a battle to fight with Imatinib. Here is the latest. I called the pharmacy to order a refill of Imatinib. The liquid suspension form of Imatinib is made in the IN-patient pharmacy at Seattle Children’s Hospital, then delivered to the OUT-patient pharmacy where I pick it up. I received a call from out-patient pharmacy informing me that the suspension they received was very chunky and so they had to send it back to have it mixed again. When I picked up the “newly mixed” suspension it still looked very chunky. Oh well, it’s not like they can just take it back. I have to either use what they give me or try another way to deliver the medicine (not happening). Theo gets anti-nausea meds every four hours these days so I figured that would help combat any extra tummy upset from the chunkiness. We know that Imatinib is very hard on the stomach because of the thick outer coating and causes a lot of nausea. The more mixed and consistent it is, the better. So remember the day Theo pooped his pants? Ugh, poor guy. Later that night, after I gave him the chunky Imatinib, he threw up in bed and his NG tube came out. Talk about a traumatic messy ending to a rough day. Fortunately, with Papa next to him to hold his hand and help him breath, and my still on point NG tube insertion skills, the tube went back in and we eventually went to bed. And that’s when the episodes began. For the next several days Theo would either throw up and/or have diarrhea immediately after getting THAT particular Imatinib suspension. His NG tube came out again a couple of days later… and went back in. Yes, I’ve still got it! Giving Theo a dose of Ativan before Imatinib helped prevent him from throwing up but he still had diarrhea. I would wait for Theo to fall asleep, give him the Imatinib and then lay next to him (puke bag in hand) listening to his stomach rumble and “talk” to me loudly. Then, without warning, Theo would jolt up in bed and alert me that he needed to be taken to the bathroom immediately! So how did we know for certain it was the Imatinib? Easy. Normal stools during the day, no outside nausea, and no fevers. Plain and simple. Theo’s doctors agreed with us but ordered the stool sample just be safe. When I called the pharmacy to request an new refill, I was told it would not be possible. My insurance would not cover an early prescription refill. Oh, is that so?? All it took was a phone call to override that decision. Fortunately, we have an excellent insurance case manager who knows me well by now and has made life much easier for us when it comes to Theo’s prescriptions. I picked up the new suspension of Imatinib on Thursday, November 19th. Sure enough, no more throwing up, no more diarrhea. Problem solved, boo-ya!

Now, I can finally move on to write about something more fun: FOOD. Yummy delicious food (according to Theo). I don’t know about you, but I find it incredibly fascinating that Theo can consume so much food and has such bizarre specific cravings. We’ve been through steroids six times now, and I’m still shocked. For Theo, food equals happiness. And what made Theo happy this round? Quinoa. You see, Theo, like many of us, associates happy memories with food. Theo spent three years at a daycare where he ate amazing food every day. He loved his time at that daycare and still talks about all the fun times and friends he had there. In fact, most of his cravings while on steroids are of the food he ate, that Lorna made for lunch. One morning Theo told me, “Lorna used to make a dish, it’s not a soup, and it has little tan beans in it and black beans and tomatoes. I want that”. Ummm ok? After playing a wild guessing game with him (NO it’s not lentils) I gave up and called Mari (owner of the daycare). HELP! Theo was having major food stress and was not going to be happy until I made him the “dish with little tan beans”. Turns out to be quinoa cooked in chicken broth, sautéed onion and garlic with spinach, peas, black beans, and tomatoes. Theo was so happy he gobbled up the quinoa dish for breakfast and dinner (or on the side) almost every day for weeks. I owe a HUGE thank you to Mari for saving us once again with numerous recipes of the food Theo desires. If Theo is happy, we are all happy. Now just for fun, let me list off a few other items Theo fancied for breakfast. Dumplings, rice and bean burritos, waffles, plain noodles, and of course, popcorn. Yes folks, all for breakfast, lasting from the moment he woke up until about 12pm. Recently he has been having a lot of corn on the cobb, ravioli, and plain white sticky rice. Luis and I were just discussing a new ache we’ve been having in our legs recently. Perhaps it has something to do with the 50 plus times we go up and down the stairs in the morning to prepare Theo’s food and take dishes up to clean them. (Bedroom is downstairs, kitchen is upstairs). Seriously, 50 times just in one morning, non stop. He breaks for nap, then it starts all over again in the afternoon. It makes me wonder, does Theo have a hollow leg, too? We will be relieved when Theo goes back to his normal eating habits, but also thrilled he still has an appetite!

Today Theo is weak. Today Theo does not want to leave the bed or be left alone. Today Theo is losing his hair… again. But what about tomorrow, or the day after that, or next month, or even next year? What does life look like when this is all over? When we can all return to our “normal” lives? When we have a vaccine and COVID is no longer a threat and Theo is clear of cancer? Well, for one thing, I won’t be checking his underwear for poop, I can tell you that much. And according to Theo, if I need a new job I can be a nurse because I am “really good at putting feeding tubes into noses”. Aww thanks Theo. But honestly, I don’t know and I don’t want to think about it. I just want us to have time to rest and digest. The first night Theo got sick and his tube came out, he had just eaten a pile of chocolate chip cookies for dessert. You might say that he regretted it later when it all came back up. The next day he said, “today I do not want cookies for dessert… it’s too much cookiness”. Oh Theo, I could not agree with you more. In every sense, it is too much. If anyone is full of it and needing this to be over, it is Theo. He is the one being brave and strong every day. He is the one who is feeling horrible and in pain. He is the one who is sick and has cancer… for now. There is light at the end of the tunnel. There are sunny blue skies in the forecast. The future is bright. Until then, we will stay safe and keep our distance from chocolate chip cookies.

As for keeping our distance from the hospital? NO LUCK. We’ve known that a fever at this time during the phase was very likely. Luis and I just hoped that Theo would not have to spend Thanksgiving at the hospital. We decided it was best not to make a lot of food in case things went south. Theo had requested to eat turkey and mashed potatoes with gravy. Papa delivered and whipped up the most delicious turkey like it was nothing. It was a lovely little family Thanksgiving, at home together, me with my two lovies sitting at the dinner table! Toasting to all we are thankful for. It was delightful, and we enjoyed every minute of it. We made it through the holiday, well… almost (sooooo close). Unfortunately, Theo spiked a fever later that night. By midnight we were on our way to the Emergency Department and by five am we were settled into our room in the Cancer Care Unit. As my grandma Ethel used to say, “that’s the way the cookie crumbles”.

To be continued… in the mean time, be safe, be kind, spread love. Good night.

Hospital days

“Art finds a way to be constructive. It becomes heat in cold places; it becomes light in dark places.” – Barbra Streisand

Published by kavila38

The mother of the beautiful, smart, best rhymer of all timer boy with leukemia hoping to keep friends and family informed of my son's progress through treatment while also expressing my feelings and making poetry

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