DAY 100

Not a sound to be heard. Not a squeak, not a word. The air becomes paralyzed in the night, as shadows swallow up all the light. The darkness so thick, you can barely see, while coldness creeps up houses and trees. Eyes heavy as dreams start to dance. The world closes in before the last glance. A peaceful slumber is what I need. To be rooted in bed, just like a weed. But outside there is an infinite abyss. Of planets and stars, in silence and stillness. So many questions about life to ponder. Thoughts race, and my mind starts to wander. My body is ready to loosen and let go. But my mind is still spinning, and emotions grow. The smile I wear all day disappears, as anger and sadness arise from my fears. I try to ignore it, try to push it away. But the more I try, the longer it will stay. I thought the poison was already gone. But this venom runs through me, I guess I was wrong.

“The witching hour” in Roald Dahl’s book, The BFG, is when all the dark things come out in the middle of the night. I do not believe in monsters, and I am not afraid of the dark. But sometimes, when I’m lying awake at night, unable to sleep, the witching hour approaches, and dark thoughts come sneaking into my room and fill my head. You know how it is. You’ve been there. Unable to sleep. Restless because your mind won’t stop. Theo falls asleep. He had his shower, took all his pills, his line is flushed, teeth are brushed. There is nothing left for me to do but sleep. But the monsters that I have been pushing away all day are waiting for me. All day every day, I am with Theo. Smiling, energetic, happy, full of hope and ready for greatness to happen! There is no room for panic or worry. There is no point to panic and worry. I do my best to control what I can and let go of what I cannot. I want to be my best self, the best caregiver for him. Stay positive. Negative emotions are kept to myself, tucked inside until I am alone, at night with my thoughts. Theo is pure joy. Well mannered, funny, brilliant, silly, and packed full of unconditional heart-warming love. It’s nearly impossible to be in a bad mood when I’m with him. Like I’ve said before, HE is my teacher. So, it breaks my heart watching him go through this. Putting up with it all. He works so hard to get better and NEVER EVER complains. That is my anger. He is fighting for his life every day. When Theo relapsed in June 2022, I wrote, “I have spent the last 7 days shedding so much anger and sadness and there is still more to let go.” Well… I’m still working on it.

Tomorrow is DAY 100!!! You don’t know this, but I am screaming on the inside right now. It feels like we just made it through the Fire Swamp from the 1987 film The Princess Bride. We made it past the delicate and very unnerving initial part of recovery. Also (and this is my absolute favorite part) Theo gets his central line removed next week!!! Talk about the best birthday present EVER! No more dressing changes, line flushes, cap changes. Theo is most excited because finally, he will take a bath comfortably, without an Aqua Guard covering his central line. It’s been nearly 10 months with those two lumens dangling from his chest constantly. Last September, Theo asked me to buy him a fancy (and expensive) bath bomb. He has been saving it ever since then for his first bath without his central line. Certainly, something to celebrate. We are not heading home to Kingston yet, but soon. First, the doctors need to determine if Theo’s body is ready.

So how do we know when Theo’s body is ready? When we look at the human body, there is SO MUCH to see! Our bodies are very complicated, interconnected machines. Every part of Theo’s body and blood work is monitored to make sure it is performing as it should. The tricky thing about bone marrow transplants, is that at any moment, something can change, and the reason is not always obvious. Presently, Theo is doing very well. “Exceptionally well” says his BMT doctor. He recently had an echocardiogram that showed his heart function being within normal range. He also had a bone marrow aspirate done on March 16th, results pending. His blood counts show a growing immune system, and all other numbers from his blood work show normal functioning organs. Phew!! He also recently had a bone density exam to see if there’s been any delay in bone growth. And he did the pulmonary function test again to compare the results with those prior to transplant. So far so good. There are no major concerns. The one issue that continues to be the roadblock in his recovery is the graft vs host disease (GVHD). It is the pestering pebble stuck in the shoe. The eyelash in the eye. The itch on the back you cannot reach. Just go away already!! We must be patient. It just takes time. Theo’s rash finally cleared, and the steroid taper started again. He is currently taking 10mg of prednisone a day, tapering down 0.5mg every 3 days. At this rate, he is scheduled to be done with steroids by mid-May. As long as Theo’s tummy cooperates, we should be able to go home early to mid-April.

Every time Theo has an issue with his tummy, I send a message to his team through MyChart to report the issue. I have recently sent several messages with titles such as, “toilet time”, “tummy troubles”, and “icky update”. Theo’s tummy is behaving like a rollercoaster ride. Some days are good, no issues. But then there are days when he has abdominal cramping, tummy aches, and the overall feeling of being “icky”. It seems to come and go, no matter what or how much he eats. Theo has acute GVHD. This type of GVHD attacks the skin and the gut. That’s why he is on multiple types of steroids. Not just prednisone. He also takes Beclomethasone and Budesonide, two types of topical steroids that target healing the gut. The prednisone is what turns him into a hungry hippo. Theo is still thinking about food ALL DAY. He locks onto one thing and obsesses about eating it until he gets it. It’s crazy!! And it’s so random. Out of nowhere he suddenly wants shrimp, zucchini, or twisty noodles (and yes, they MUST be twisty). He will keep bringing it up, all day, until he eats it. Overall, his diet has been very healthy. His doctors are amazed at what he eats, especially for a seven-year-old boy. He eats his usual favorites like cereal, eggs, toast, and fruit for breakfast. Smoothies, dumplings, rice, beans, fish, spaghetti, soups… and lots of vegetables. He truly eats just about anything (and loves to talk about it). But then of course every now and then he craves greasy fried chicken, fatty bacon, or buttery clams. With his stomach acting the way it is, we have to be extra careful about what he eats. One day I told him he needed a break from greasy fatty foods. Uh oh. Theo did NOT like that. He had a back poke coming up and was planning on eating fried chicken afterwards. He started sobbing!! “No cheeseburgers?! No bacon?! No fried chicken?!” He is extra sensitive on steroids. I must have told him at a bad time, because a couple hours passed, and he was totally fine about it. He told me, “It’s really no big deal, it’s not forever, and those foods aren’t that good for me anyways.” Good grief, what a relief! So, what is causing the abdominal pain? Could be a lot of things: GVHD, a still very sensitive stomach, backed up stool in his intestines, difficulty absorbing fats, all the medicine/pills he takes daily, especially the chemotherapy pill Disatinib he recently started taking. The two most common side effects of Disatinib are GI upset and fatigue. You name it, there are several reasons for his tummy to be unhappy.

Theo’s tummy may be unhappy at times, but Theo is a happy clam. Nothing makes him happier than an adventure with his mama and papa. That’s when Theo says, “I feel like a normal kid again.” We don’t go far, of course. Just out to the park, to play, stroll, or catch a beautiful view. It’s a special time, for the three of us to be together, having fun and laughing together. Theo loves to show Luis all of the art projects he’s been working on, a new skill he’s learned, or something funny that happened during the week. He was most excited recently to show Luis how he can play tennis. We just started playing about one week ago and now he’s hooked. He has also played with his best friend at the park! What a treat. These family outings and seeing his best friend recharges Theo. That’s the best medicine. The daily goal remains the same: feel good and have fun. Theo is staying busy with his appointments at the hospital. Twice weekly labs and provider visits. Occupational Therapy and Physical Therapy are twice weekly appointments. They are always fun, playing games, sports, or doing fun projects. Theo also gets to go the hospital classroom for in-person learning with his teacher and up to two other BMT patients (1-hour sessions) up to four days a week. Mike from Art Therapy has included Theo in a very special art project. Theo got to paint on fabric that is going to be a part of a real astronaut uniform! A real astronaut is going to wear Theo’s design in outer space! He’s one busy bee. He’s still doing online school (2nd grade) with me during the week and piano lessons with Mormor. With any extra time, we are squeezing in as much fun as possible. Bike rides, tennis, baseball, walks, workouts… doing our best to meet our daily goal: feel good and have fun. Each day, I get another daily dose of snuggles, love, and smiles with Theo to help keep the nighttime monsters away.

Knowing how to support someone who is battling cancer is not always easy or obvious. A lot of people want to be supportive but don’t know how. I heard from several people that they wanted to reach out but didn’t know what to say. They were thinking of us but wanted to give us space. It’s common to wonder, “What should I say?” “What should I do?” “How can I help?” And it goes both ways. Avoid any awkwardness, right? Many patients and caregivers do not like to ask for help, or don’t know how. They suffer in silence, hide their pain or push it way in hopes that it will be lost or forgotten. Caregivers are so focused on staying positive for the patient but often falling apart inside. Especially while in the hospital, a place that is filled with pain and distress. You don’t have to understand what they are going through. Why should you? But you can support them in so many ways! Here are a few things you can do that a cancer patient or caregiver may appreciate. LISTEN to them. Let them tell their story and share their pain, without you needing to understand or give advice. Reach out, let them know you are there for them. Keep checking in. Do not stop checking in just because you haven’t heard back. Offer to go on a walk with them. Bring them a coffee. Send them a card. DONATE BLOOD! Donate to cancer research! Theo loved it when he received cards from his classmates, a video from his best friend, or an email from someone he admires. It doesn’t take much. But it always brought a smile to his face to know people were thinking of him and that he was missed. An older man (a patient receiving radiation) who had seen Theo in the Radiation Oncology Clinic at the UW sent Theo a Spider-Man plushy with a friendly note. It brought me to tears that a complete stranger would do something so sweet to lift Theo’s spirit. And there was so much more! Books, toys, blankets, slippers, cozy hospital clothes. But even just a simple, “I’m sorry you are going through this” means a lot. I never dreamed that MY CHILD would have cancer. That we would be on this side. The side receiving help and support. No one ever thinks that. But now that we’re here… we know what has helped us and we are grateful for the support and love.

“Open your eyes and see what you can with them before they close forever.” – Doerr, Anthony. All The Light We Cannot See. Scribner, 2014