The Secret Ingredient

The other day I was listening to a podcast with Paul Bloom, psychologist, author, and professor of psychology at Yale University and University of Toronto. He was having a discussion with the podcast host about human capacity to reason, the nature of human memory, and how events shape our lives. He said something that right away caught my attention. “Humans poses a negativity bias. When something bad happens to us, we tend to think about it too much.” I had to hit the pause button and think for a moment. Did I agree? Absolutely. You could be having a very calm, lovely day but then as soon as something bad happens, it takes over. It’s all you think about or talk about for the rest of the day, or maybe even months! But when something good happens, it doesn’t have the same effect. The negative is more powerful than the positive. Just look at the news! As I continued my search to validate this claim, I found endless examples… until I thought about Theo. He is an exception to the rule. He has the ability to let bad news bounce off his shoulders. Like there is an impenetrable force field of positivity surrounding and protecting him. A few weeks ago, Theo was close to reaching a fever and almost had to be admitted to the cancer care unit. You would think he would be upset, disappointed, dreading it… especially after everything he has been through. Without a doubt that’s how I felt. But not Theo. His reaction when I told him we might have to stay at the hospital was unbelievable. He said with a smile, “That’s ok. At least we can draw on the windows and order guacamole whenever we want!” Silly me. Here I am freaking out while Theo is looking on the bright side. Thank you, my sweet boy, for reminding me to breath and focus on the positive. I can see it, I can feel it, radiating all around him. There is a light inside him that is so compelling and bright. He is pure sunshine.

Thankfully, Theo did not need to go back to the cancer care unit. But we have encountered a few roadblocks this far out from transplant day. Yes, even past day 100.The most challenging mystery we have delt with is the tummy pain. Here we are, one month later, and we are still talking about it! My food and medicine journal is FULL of notes about Theo’s bowl movements. Every detail, down to the duration, frequency, and symptoms he is experiencing. I’ve had multiple hour-long conversations with his doctors about it. The most frustrating part is that at the end of the conversation, nothing is solved. We are back at square one, scratching our heads and once again looking at the long list of possibilities. By March 30th (day 108) Theo’s blood counts were on a steep decline and his electrolytes were all out of wack. Most alarming was that his liver enzymes had risen to a dangerous level. Something needed to be done, quick. The signs were all pointing at Disatinib (oral chemotherapy). Theo started taking Disatinib on Thursday March 16th (day 95), once daily. The following two weeks Theo had diarrhea, abdominal cramps, toxic toots, and was feeling lethargic and icky. Fortunately, his doctor ordered the stop of Disatinib. Could that be the culprit? His doctor said “MAYBE”. It’s so hard to know the exact cause when there are so many pieces to the puzzle. Theo’s history of GVHD, his sensitive healing gut, the Norovirus (still shedding from his gut lining). The answer is that it could be a combination of many things. But if you ask me? My answer is YES, Disatinib is to blame. He stopped taking it, and like magic, Theo’s energy returned, his tummy pain went away, and he started having normal bowl movements again. Coincidence? I don’t think so.

So what do we do moving forward? What is plan B? On Monday, April 17th, we had a meeting with Theo’s BMT doctor and the oncologist who was part of his pre-transplant team. The oncologist is leading the research on the benefits of oral chemotherapy post-transplant to prevent the return of leukemia. She is primarily focused on the cancer treatment and the prevention of a relapse. The BMT doctor’s main focus is the transplant itself and the recovery following, along with finding the right dose of medications and immunosuppression that allows the patient’s immune system to grow strong. The two doctors must work together to find the right balance to promote recovery while maintaining remission. We understand the importance of Disatinib, but at what cost to Theo’s quality of life? There were days when Theo would not get out of bed and barely ate while taking Disatinib. That is not recovery. That is not getting stronger. Both doctors agreed. The plan is to continue oral chemotherapy BUT at a much lower dose, less than half. If Theo tolerates the lower dose, we will continue and eventually try to increase the dose in a few weeks. If Theo does not tolerate the lower dose, then they want to try switching back to Imatinib and see if that works.

Two steps forward, one step back. Theo’s tummy pain was gone. So what now? On Friday, March 31st (day 109) small pinkish-red spots started appearing on Theo’s back, hip and grown area. They were not itchy and according to Theo’s doctor, did not resemble the typical rash associated with GVHD. As days went by, the rash spread and became more noticeable. I must have sent at least 20 photos of his rash to his team via MyChart over the next three days. Next, came the elevated temperatures. Theo’s temperature was bouncing back and forth between the yellow and orange zone for several days. When the temperature is in the yellow zone, it needs to be re-checked every hour. If it gets into the orange zone and stays there for an hour, then you need to call the hospital and likely go into the ED. I packed a bag for the hospital while my heart pounded in my chest. Fortunately, Theo never got a true fever and we got to stay home. What was it? What was causing it? Who knows!! Another mystery. Possibly a virus, possibly a delayed reaction to the Disatinib. Even the dermatologists didn’t have a clue. Theo’s temperature went back down but the rash eventually became super itchy and uncomfortable. That’s when GVHD made a comeback into the conversation. That is the last thing Theo needs right now. He is so close to being done with the steroids. Luckily, his doctor did not hold the steroid taper. Instead, we applied Triamcinolone ointment (topical steroid) twice a day to his entire body. It worked! The rash disappeared in the next couple of days. Hooray! Another monster defeated. The coast is clear… for now.

April showers bring May flowers… and our family back together at home. How is it being home? Wonderful. We are together at last in our home!! One step closer to life feeling somewhat “normal” again. If you ask Theo what his favorite thing is about being home he will say, “cooking with my papa and eating delicious food with my family all together”. Food is Theo’s passion. Cooking with Luis brings him the greatest joy. He has this brilliant energy that comes alive as soon as he starts talking about the food he is going to make and eat. His eyes light up and he speaks with such intensity. He has even started recording recipes with instructions on how to make his favorite dishes in a notebook. If you ask me, Theo IS the secret ingredient to any recipe. Just watching the way he seasons and sprinkles herbs onto food. He is creating art. I am so spoiled with delicious food. Since coming home, Luis and Theo have made soup, steak, fish, shrimp, enchiladas, clams… and so much more. Theo loves seafood. This past weekend he planned a “seafood fest” with Luis. They made a buffet of their favorite seafoods. If I could, I would send every one of you a personal invitation to come over and eat with us. But I guess you’ll just have to wait until Theo opens his seafood restaurant on the beach in Mexico to get a taste. That’s his plan! Theo also loves the nature surrounding us here in Kingston. He says the city is too loud. The connection with nature and wildlife is so much stronger out here. We see bald eagles daily, and watch doves and woodpeckers swoop and bathe themselves only feet away from us. At night we hear frogs and crickets in the forest behind us, nothing else, it is so quiet. The sky lights up with so many stars on a clear night, we get lost just staring at them. There is so much unknown, so many mysteries out there in the great big universe. As I stare up at the wonderous night sky with Luis and Theo by my side, the rest of the world, worries, and problems disappear.

Presently, Theo is doing great medically. His doctor is very pleased with how he is progressing and relieved to see that his blood counts immediately recovered after stopping Disatinib. She has no concerns and is eager for him to be done with steroids (as are we). Theo is currently taking 4mg of prednisone a day. Soon it will be 3mg, and then he will switch to hydrocortisone. It may take some time for Theo’s adrenal glands to wake up and function normally again. It’s expected to happen after being on steroids for as long as Theo has. His doctor has taken him off some of the other medications as well. The number of pills per day is slowly decreasing. Every time she tells me she is reducing or removing a medication, she says it with this big, beautiful smile. It’s like she is giving us a present every time and it feels like a warm hug. Theo also had his central line removed on Monday, March 27th (day 105)!!! We had been counting down the days until his line removal for such a long time. It was so easy, so quick! Five minutes and BAM! It was out. Theo celebrated with – you guessed it – a seafood spread. Luis came over to my parent’s house (on his lunch break from work) after the procedure and whipped up calamari, prawns, and crab within 10 minutes. Melt in your mouth marvelous. Happy does not describe how we all felt that day.

Now, Theo only has to go to the hospital once a week for a lab and provider visit. Every Sunday we pack our bags and head back to my parent’s home for a couple days stay. We are so fortunate that coming to Seattle is not a struggle. A visit to Seattle means time with my parents and friends. It’s a treat for us. Mormor has dinner ready for us and we play Yahtzee with my parents (when Theo has energy). The ONLY downside to not having a central line is the difficulty of blood draws. It is NOT easy to draw blood from Theo’s tiny veins. We encountered this exact same problem two years ago after Theo’s power port was removed. The central line meant no numbing cream, no pokes, and a steady flow of lots of blood. Now, it’s the opposite. Theo has to drink A LOT of water (more than 60 oz) the day before a blood draw to make it even semi-possible to draw blood. We were told that all the chemotherapy and radiation can shrink the veins. Medications can also contribute to dehydration. None of the nurses in the BMT clinic have been successful at getting blood from Theo, not even the charge nurse. Theo has to go to the main lab to see the specialists – the phlebotomists. Still, even the pros have a difficult time. If you saw Theo’s hands and arms you’d understand. They are black and blue all over from the all the pokes. Does Theo complain? Never.

“Are we there yet?” That’s me. I’m that kid in the back of the car asking if we have reached our destination, eager to get out of the car even though we have only made it out of the driveway. There is still a LONG WAY to go!! How is Theo doing? It’s complicated. Today Theo might feel great, but tomorrow he might not want to get out of bed. This is a marathon, and there are obstacles and bumps along the way. His body has been through so much. It’s taken a brutal beat down while at the same time trying to manage all the medications. Like building a house on quicksand. It’s not a perfect science, it’s finding balance. Theo is not recovering from a broken arm. He is recovering from having his immune system wiped clean and a stranger’s bone marrow transplanted into his body. You know the saying, “Rome was not built in a day”. Well, neither is an immune system. Sometimes the treatment doesn’t work as you hoped it would. BUT sometimes, you roll a Yahtzee twice or you see two shooting stars!! It works out even better than expected… and it’s more exciting and more beautiful and more fantastic than you ever imagined it to be.

“Food is not just fuel. Food is about family, food is about community, food is about identity.” – Michael Pollan