A big reason I created this blog was to keep everyone up to date and informed on how Theo is doing. The most common text I get from friends and family is “How is Theo doing? How are you?” Those are such difficult questions to answer. If I truthfully answered those questions every time someone asked I would never stop texting or looking at my phone! I hope this blog can be a way to answer those questions. Only problem is that I haven’t given any updates!! Ok, so I am a bit behind schedule. The first month was such a blast into leukemia outer space that I had to wait to come back to earth before I could put my thoughts together and focus on writing. With that said, I present to you the first update. Where were we? Oh yes… Theo was in the ICU. On Tuesday, Jan 14th, 2020 Theo was discharged from Seattle Children’s Hospital. We left the hospital knowing of the hard road ahead but unaware of what that REALLY meant for us. What I’m about to tell you is what that road looked like over the following 28 days. Lucky for us, unlike the movie, we did not encounter any chimps with the “rage” or have to fight any zombies. But it was still scary!
Let me first begin with a (hopefully) quick and very basic introduction to how leukemia is treated. Leukemia is cancer in the bone marrow. There is no “one size fits all” treatment of course, every case and individual is different. Protocols may change along the way depending on how individuals respond to treatment. Acute lymphoblastic leukemia (ALL) is treated with chemotherapy in phases: induction, consolidation, interim maintenance, delayed intensification, then maintenance. Each phase can last anywhere from four to six weeks, except maintenance which last two or more years. Chemotherapy drugs and other drugs used may vary and change from phase to phase. The goal being to “trick” the leukemia cells, coming at them from every angle… like a full court press. You wouldn’t believe how smart and sneaky those dang leukemia cells are!! A central line is needed to deliver many of the chemotherapy drugs into the bloodstream. A central line is a small tube that is surgically placed and can stay in place throughout treatment. For the first three weeks Theo had a central line in his arm that we called the “super tube”. We had to flush the line every night with extreme caution to not make mistakes that could lead to infection. Very stressful!! On February 11th, 2020 Theo had surgery to have a Port central line placed. It is surgically placed into a large vessel near the heart with a reservoir placed just under the skin on the upper chest. On days when it is not in use, there is no tubing hanging out of the body. This is the best time, when Theo can enjoy a long bath or shower, and even go under water. No plastic sticky covers to worry about getting wet! When it needs to be used, a needle with tubing attached is placed through the skin into the reservoir. Throughout treatment blood counts are constantly being monitored. Blood counts are a blood test that measures how many red blood cells, white blood cells and platelets a patient has. Chemotherapy kills the ability for bone marrow to make these cells. It is common for patients to need red blood or platelet transfusions when blood counts are low. Infection fighting cells (first responders), called neutrophils, will also drop during chemotherapy, putting a patient at high risk for infections. Treatment may be delayed if blood counts are too low. At the end of the induction phase a sample of bone marrow is taken to check for any remaining leukemia cells. This procedure determines what is called the minimal residual disease (MRD). If the MRD is ZERO leukemia cells… hooray, the patient is in remission! Following phases must be completed, otherwise the leukemia cells will likely return. All together treatment is expected to last 2-3 years (longer for boys).
Attached is a photo of Theo’s treatment roadmap. Confusing? Absolutely. It only took three explanations from Theo’s doctor to finally understand it all. Due to the Philadelphia chromosome attached to his leukemia cells, Theo’s phases are longer and more intense. The first 28 days were Induction 1A Part 1 and Part 2. Theo is currently in Induction Part 1B. Still with me?? Ok then, grab some tea or coffee, or something stronger perhaps! Now we get into the actual story telling.
Leaving the hospital we had no idea just how challenging it would be for Theo to take medicines and how many he had to take at home every day! The nurses gave Theo his meds every day while in the hospital in the beginning and it seemed easy enough. That’s what we expected… go to the hospital for meds, right? Wait, WE have to give him medicine at home?!? The two hour training we had with the pharmacist gave me a clue but that didn’t help prepare us for the overwhelming stress and panic of “medicine time” we soon started to experience at home. Before Theo went in for his last lumbar puncture procedure (chemo delivered to his spinal fluid) the nurse casually mentioned to me that the doctors could also insert a tube through his nose while he was asleep, for easier medicine delivery. I thought “wait, should I be worried about giving him his meds? Why are you mentioning this now, is that normal?” Now I see the benefits of it. But of course at the time we declined… “oh no, we got this!”
In the first 28 days, Theo was taking up to 10 meds a day. Some easier than others but all tasting pretty bad. We used it all: ice cream, juice, apple sauce, syrup, yogurt, lollipops. If only “just a spoon full of sugar” could help these medicines go down. Mary Poppins we need you!! Medicine time became this major stress of the day, almost causing Theo to have a panic attack. I dreaded it and would plan in my head this new easy approach that would make it sound “fun” or “easy” but that didn’t seem to help. How am I supposed to do this? Oh, just all of a sudden this is a totally normal thing where we take all these icky meds every day, woohoo!!
Just when I thought it couldn’t get any harder, a new drug was introduced two weeks after discharge: imatinib aka “water medicine”. It is the only known drug to kill the Philadelphia chromosome attached to Theo’s leukemia. He has to take it every day for the rest of treatment and it comes with a very pretty and massive price tag. I am ashamed to share my worst moment with Theo but here it is. Because he cannot swallow the two and a half pills of imatinib (yet), it must be diluted into a full glass of water and finished within 15 minutes, before the drug loses its effectiveness. It tastes awful. Theo was having a particularly hard time one day. He was stalling, complaining, taking tiny sips, there was no way we would finish in time and we were going to have to start all over. I was doing my BEST to stay calm. We were both raising our voices frustrated with each other as I urged him to hurry up. While trying to give him a rushed sip, Theo started coughing and the water spilled all over him. I immediately got upset and lost my temper. I had it!! “CRAP!! Theo!!! Take the %$&# medicine, it is going to save your life!” Of course Theo started crying. And then I felt like a total failure. Way to go me.
Now, let me tell you about steroids. Attention everyone: steroids are awful. At least when taken by a four and a half year old for 28 days straight! Steroids made Theo moody, cranky, irritable, HUNGRY, and worst of all… weak. Theo lost all ability to walk, even stand, for about four weeks. Steroids wiped out his muscle strength in his legs and arms. It got to the point where we had to pick Theo up out of bed and carry him to the bathroom toilet seat. Talk about a good workout, carrying a 45 pound kid around! We were told that all of this was completely text book and his strength and mobility would return within several weeks after steroids ended. We had to stay close by at all times, in case of emergency. Usually the emergency was a food craving. I have never before seen a kid eat so much in my life. I’m talking salami 24/7, rice at 3am, three chicken legs for breakfast and more! Theo’s taste buds changed, his cravings were random but very specific. For example, this is what he ate one morning for breakfast: six chicken nuggets, strawberries, apple, green beans, and TWO ham and grilled cheese sandwiches. We spent our days cooking and preparing food, nonstop. Grocery runs daily. Theo’s mood swings got the best of me. I could not take another eye roll. Where was my sweet sensitive silly boy? I was constantly told “do not look at me” “do not talk to me” “do not touch me”. It hurt bad and I had to believe my husband when he told me it was the steroids, not Theo. Thank goodness he was right. 28 days later… Theo finished Induction 1A part 1 and part 2, as well as the steroids. We then saw him slowly make the transition back to himself. Oh yes, he’s back stronger than ever!!! At the end of Induction A, Theo had an MRD test. There was 0.06% leukemia present, which is very good! For Theo, the goal is to have 0.05% leukemia at the end of Induction part B so he can be out of the high risk treatment group. He’s almost there. Sounds like a win, and what do we do with a win? We celebrate!!!!
“Now don’t be angry after you’ve been afraid. That’s the worst kind of cowardice” – The Jungle Book