Lessons

November 2021. It’s been one year and 10 months since Theo was first diagnosed with leukemia. One year and ten months of heart ache, tears, triumphs, fear, stress, and insane love. One year and ten months of (pardon my language) figuring this shit out. The therapy map, back pokes, hospital stays, the list of medications, going to the emergency department. So much has happened and we have learned (and are still learning) a great deal throughout the process. It’s been an overload of information! Do you remember it all? Don’t worry, this is not a test. It’s easy to forget all the details. I’ve had to go back to past blog entries to recall certain details several times. This blog has been extremely helpful in sharing the journey of events and our emotions. It has also been an effective way to inform and educate friends and family about Theo’s experience with leukemia. But I also hope this blog will serve as a diary of sorts for Theo to look back on in his older years. For this entire experience not to be just be a distant bad memory from his youth, but a reminder of his strength. A badge of bravery that he has earned and can be proud of. I hope that his enthusiasm for telling others about what he has been through stays with him throughout his life. After all, this is HIS story.

In case you have forgotten, here’s a quick review of some important bullet points to remember: Theo has Philadelphia chromosome positive acute lymphoblastic leukemia (ALL), diagnosed on January 9th, 2020. He has a power port that was surgically placed under his skin to receive chemotherapy. A blood sample is taken from his port site at every appointment. The Complete blood count (CBC) is checked at every appointment to evaluate overall health and measure levels of red blood cells, white blood cells, hematocrit, hemoglobin, platelets, and liver function. A CBC also detects the absolute neutrophil count (ANC), a measure of how strong the immune system is. Chemotherapy wipes out all cells good and bad, significantly lowering the strength of the immune system. Theo has completed the following phases of therapy: Induction 1A, 1B, Consolidation #1, #2, #3, Interim Maintenance, and Delayed Intensification… twice. Theo is currently in Maintenance phase. The last and easiest phase of treatment. Medications he is currently taking are Imatinib, Bactrim, Mercaptopurine, Methotrexate, and Zofran. End of therapy is January 11th, 2022. I know, I know. I told you all it was January 26th, but I was wrong! Theo started Maintenance on January 26th, 2021. At that time I was told that Maintenance phase lasts for one year. However, at Theo’s most recent appointment I was told that Theo’s therapy ends two years after his start date. Hey, I’ll take it! Even sooner than expected, so that makes us all very happy. Theo has roughly two months left of therapy. Soon, he will have his port surgically removed. What comes next? WE CELEBRATE!!!!

Not much has changed since my last update. That would explain why I have not written since September! Wow, how time flies. What have we been up to then? We’ve been keeping busy with work, life, and just doing typical six year old boy stuff. There is never a dull moment. Theo has two very wiggly dogs (the “pig” and the “wig”, as he calls them) to play with, do his lessons with, to run with at the park, and to be his audience when he plays the piano. Although the weather is not always the best for playing outside, we make it happen every day. Especially now that Theo is obsessed with basketball. First it was baseball, then soccer, now it’s basketball. Even though the ball doesn’t quite reach the hoop yet, he doesn’t care. He uses all his strength to throw the ball into the air towards the hoop as high as he can. Even after his arms tire out he will dribble the ball… for hours. It’s a perfect family activity, a favorite family sport. Luis and I met at a gym, Sound Mind and Body, and used to spend hours playing basketball together at the gym on the weekends. Theo is still doing online school and for the most part it is still a success (some days more than others). He will eventually go back to school in person and we know it will be so good for him. All the play time with Mama and Papa does not fulfill his need be with friends, kids like him. Whenever he gets to play with his best friend, Cameron, he transforms, like a new person. The energy, the excitement and happiness that explodes from his body makes all things bad disappear. It’s the best medicine for his soul. And let’s not forget Spider-Man! He never leaves Theo’s thoughts. He is everywhere all the time. The Spider-Man stuffies, the video game, the costumes, the movies, the books, the toys. He’s on Theo’s bedroom walls, his sheets, his clothes! Can you guess what Theo was for Halloween?? That’s right, Spider-Man!! So there you have it. The life of six year old Theo. Now, let’s move onto the medical update.

Day one of Maintenance, cycle four, was on Wednesday, October 6th, 2021. Theo had an appointment for labs and a provider visit. His blood counts were strong with an ANC of 1,300. His liver function measured to be a little higher than normal but not an urgent concern. In other words, no need to lower his chemotherapy dose just yet. Theo looked good. He looked strong, “clinically doing very well” as is stated in his assessment. It has been our ONLY hospital visit since the last update! Of course that doesn’t mean that everything has been perfect. There is always something to be concerned about. After all, he IS taking chemotherapy, medications that are saving his life but are also toxic to his body. We expect there to be side effects from the medications. When and how they will preset themselves is the big mystery. Like the rash that developed on Theo’s face and fingers in late September. It started out looking like eczema on his right and left cheeks. A few days later it had spread, red and bumpy all over his face and left hand. It was a little itchy at times but not painful. We took pictures and sent them to Theo’s team through MyChart. The rash was non-infectious in appearance and was likely related to Theo’s medications. We were advised to keep his skin hydrated and monitor for any changes. Fortunately the rash cleared about one week later. We also thought it was likely due to the medications. This is not the first time this has happened. Shortly after Theo started taking Imatinib, back in January 2020, he developed a rash all over his stomach and back. It lasted about two weeks and then cleared up.

Even more alarming was the morning Theo woke up with tachycardia. I was away from the house that morning and Luis was in his office working. Luis ran to Theo’s room when he heard him crying. Theo’s heart felt like it was going to explode out of his chest it was beating so hard and fast! He was too dizzy to even sit up. Theo was scared. Luis, also terrified, helped Theo relax. Just like when Theo had his acute allergic reaction in the hospital, Luis was there to comfort him. Was it a nightmare? A fever? Infection? Nope. Theo did not have a fever. After some tears, hugs, and snuggles with Papa, Theo recovered and continued his day as if nothing had happened. Without a fever or any other symptoms there was no need to see the doctor. Again, just monitor and call if anything else unusual happens.

There are other side effects that we are more familiar with, nothing we haven’t seen before. Theo experiences quite a bit of cramping. It can be as small as a hand cramp from holding a pen or as bad as a Charlie horse. You know how those are. That sudden acute pain from your muscle locking up. All you can do is hold your breath and grit your teeth until the muscle finally relaxes. It doesn’t matter how much water Theo drinks. He never seems to be hydrated enough. A warm pack or cloth is the only thing that seems to help, but by then the pain is already there. Occasionally Theo will just have random and very sudden pain in various places in his body. Theo will be running down the street and then stop dead in his tracks, grabbing hold of his hip, leg or ankle. It comes and goes randomly. We stop, rest, hydrate, and monitor. Luis and I are constantly telling and reminding Theo to drink water, which he does very well. I wouldn’t be surprised if Theo ends up gluing his water bottle to his hand after this experience. It’s like adults and our smart phones… can’t go anywhere without it!

Nothing gets my armpits sweating more than Theo getting sick. A rash, a fever, or an unpredictable or inexplicable pain gets my heart racing and stomach turning. Not now. No more. He’s had enough. He is doing so well now and we want it to stay that way. That’s the thing about all the medications Theo is taking. All the possible horrible side effects. They are like termites hiding in your hardwood floors, slowly eating away at the wood without you even knowing until the floor collapses beneath your feet. There is no way to prepare for any of this. It’s like taking your first new born baby home from the hospital. I remember how afraid I was to take home Theo, this tiny helpless human, and be responsible for his life! The “what ifs” were endless. What do you do? Just do YOUR BEST. Listen to your gut, follow your heart, trust your instincts. Remember what Theo’s doctor said, “there is no right or wrong answer”. We are all doing the best we can with the knowledge we have. It’s okay if we don’t have the answer to everything. ASK QUESTIONS. Yes, we make mistakes, and hopefully we learn from them. Try not to dwell on what could have or should have been done, but what we can do moving forward. Stay positive!! Knowing that for every bad moment, there are at least one billion wonderful moments. These are all the lessons I am still learning and have to remind myself of each and every day. I cannot let myself worry so much about what might happen. Instead, appreciate what we have. An incredibly sweet, sensitive, smart, strong boy. My angel. Theo is our reminder of all that is beautiful in this world. He has learned so much through pain during this process and to be eager to share his story is his gift to the world.

“The Pig and The Wig” A poem about our dogs, Manu and Maggie, by Theo Avila

The Pig and the Wig. The Pig and the Wig. The Pig and the Wig want to be big.

The Pig and the Wig. The Pig and the Wig. The Pig and the Wig want to eat a fig.

The Pig and the Wig. The Pig and the Wig. The Pig and the Wig like to dig.

The Pig and the Wig. The Pig and the Wig. The Pig and the Wig dig a big fig.