Revolution: the action by a celestial body of going round in an orbit or elliptical course; also: a sudden, radical, or complete change.
As earth makes it’s way around the sun, it evolves, it changes. A year long continuous journey for our planet earth. It twirls and spins through years of abuse, pollution, and being stripped of its natural self. Constantly rebuilding and repairing itself. Like earth, our lives are constantly evolving and changing as we continue our orbit. We change the way we live, the way we think, the way we feel. Looking for ways to improve and overcome life’s challenges. Creating stories and making history. Making a closer connection to ourselves and with each other. Challenges change us. Struggles change us. They unlock our potential and reveal the gifts we have. Sometimes, change can make us stronger and better. In earth’s most recent journey around the sun, Theo went through a revolution. His story is now one of the stars. In body, mind and spirit, he has endured radical and sudden changes that I believe, without a doubt, have made him a more brilliant person.
“Mama, what time is it in Japan?” The newest most frequently asked question of the day. In recent weeks, Theo has been talking non stop about wanting to go to Japan. Why? Oh, well let’s see. Could it be his obsession with ninjas or his love of eating sushi? Also, his favorite Street Fighter, Riu, is from Japan. That said, we better make plans to visit soon! We have been spending a lot of time talking about why there are different time zones and why the time changes when you travel, because that is important information if you go to Japan, am I right? Theo has learned about how the earth spins while it orbits the sun. He understands that while it is daytime here in the United States, it is nighttime in Japan. How cool is that? His face, his expression, his hands moving energetically while he told me all of this. Eureka!! Let’s just say… it got me thinking about earth, it’s orbit, the sun, the moon, the stars… the universe, and how we are all mixed up in all of it and making our mark.
Finally… MAINTENANCE. Theo just barely made the counts to start Maintenance on Tuesday, January 26th, 2021. As I mentioned in my last blog, his platelets were having a difficult time recovering from the last phase of chemotherapy. They were on the rise, but very slowly. The cutoff to make Maintenance is 50,000 platelets. Theo had 77,000. His ANC needed to be at a minimum of 500. His was 589. His hematocrit (red blood cell percentage) was low at 23.3% but high enough to move forward. At last, Theo gets to transition into a phase of “normalcy”. This means that Theo should be feeling well enough to be more active, play outside, and socialize (at a distance with a mask of course). Again, if it weren’t for Covid, Theo would be returning to school and going to visit all of his favorite places. But really, we’re just excited for him to have energy to play, feel good, and have fun… to just be a kid again. Hopefully no more hospital stays and definitely no more hard hitting intense chemotherapy!
Presently, Theo is in his third week of Maintenance. So far so good. It’s not quite the five star luxury getaway that I was dreaming of. More like a cozy weekend cabin retreat type of feeling. Hey, I’ll take ANY kind of improvement or positive change at this point. To feel that a weight, even as little as five pounds, has been lifted off our shoulders is incredible. There will be plenty of time for fancy vacations and fun adventures in our future. This is ONE STEP in the right direction and we are so so incredibly grateful for it.
Let me tell you how it’s going. Typically, when a patient reaches Maintenance, there is no need to return to the hospital for at least two or even three weeks. However, because Theo’s hematocrit was low and his blood counts barely made the cutoff, he had to return one week later on February 2nd. Sure enough Theo needed a blood transfusion. Theo had also developed a bad cough over the weekend. It was no surprise then that his energy was low and he needed to rest. We were kept in isolation and Theo was swabbed for Covid. It always gets our hearts racing when Theo gets a cold because the first thing we think of is, “OH NO… what if it’s Covid?!?!” Fortunately the results came back negative. Theo was asked to return for another visit that Friday, February 5th, to check blood counts and get a broad spectrum swab to test for viruses that could be causing the cough and cold symptoms. Turns out Theo had not one but TWO viruses!! He tested positive for the rhinovirus (common cold) and adenovirus (another common virus that can cause a wide range of cold-like symptoms). He was told to stay inside, stay warm, rest, drink lots of fluids, and watch for a fever. Oh man, this is no fun! Isn’t Theo supposed to be feeling better? Oh well, what’s another couple of weeks staying inside all day after doing that for almost an entire year? Not the start of Maintenance we were anticipating, but that’s OK. But seriously, what’s going on? Apparently, there is more to Maintenance than we knew about. A friend of mine gave me a heads up, a little inside scoop about how maintenance meds and doses work (such a valuable friend to have). Very helpful information that made me ASK QUESTIONS and gain a better understanding.
During Maintenance, Theo takes three chemotherapy meds orally. His dose for Imatinib never changes. It is a constant throughout his therapy. The dose for the other two meds, Mercaptopurine and Methotrexate, can be changed based on Theo’s blood counts. For example, if Theo’s neutrophil count is low, it might be that his chemotherapy dose is too high and vice versa. There is a “sweet spot” of where Theo’s counts should be. The ANC sweet spot is somewhere between 750 and 1,500. Therefore, some patients could be getting anywhere from 60 to 80% of their dose to prevent their numbers from getting too low. Theo started Maintenance with his dose at 100%. If his blood counts ever drop too low, his dose percentage will also decrease. If his blood counts are above the sweet spot, his dose will increase. It’s all about finding balance. So what IS too low? Just like how Theo had to make the cutoff to start Maintenance, there is a threshold for stopping chemotherapy. If his blood counts drop below those thresholds, all chemotherapy will stop until his blood counts go back up. ANC will always need to be above 500 and platelets will always have to be above 50,000 to continue therapy. The good news is that unlike other phases he has gone through, Maintenance NEVER gets delayed. The end date remains the same no matter how many times therapy is put on hold. It’s not a matter of finishing a specific dose of medicine, it’s about completing the amount of time being in the phase. That is SO COOL!! Mark your calendars everyone! No matter what, END DATE for all therapy is: January 26th, 2022
Theos is presently getting 100% of his dose. It has never changed, it never needed to. Theo returned to the clinic on Friday, February 12th for another lab visit. His blood counts looked great. No need for any transfusions, no need to stop chemotherapy. The appointment was short and sweet. We were free to go home. His next visit is on February 23rd. Wow, to go almost two weeks without an appointment seems crazy! I guess we better get used to it. We will also plan for an IV placement in his arm for blood draws instead of doing a port access at his next visit. Theo is super excited about that. If all goes well, we will schedule a surgery to remove his port! No more needles going into his chest, no more box under his skin that sticks out. One HUGE step for Theo to feel like a normal kid again. That and seeing his friends again!! Theo finally got to play with his best friend at the park the other day. It was like medicine for his soul. To see Theo and his friend playing, as if nothing was wrong in this world. Nothing else mattered, they got straight to the fun, being crazy and silly together. Theo’s cough is so much better, it’s almost gone. You know how colds can be… sometimes they drag on forever. So we stick to our pace: one day at a time. Theo may be in Maintenance, he may be feeling better, he may be ready to dive into the deep end, but we are keeping him in the shallow end. As good as he looks and feels, we have to remind ourselves, he is still fighting cancer. He is still taking chemotherapy. He is still highly susceptible to getting viruses, which could interfere with his therapy. I know Theo wants to be outside playing in the snow for hours and run in the rain and splash in puddles all day. He is a five year old boy, after all. You can see it in his eyes. A wild desire for adventure. To jump higher, run faster, and kick harder than ever before. It makes Luis and I the happiest parents to see him bursting with energy. But we have to find a balance as well, with how much we are willing to let go. How far do we let him run until we tell him to stop and wait? How high do we let him climb until we tell him to come down? My Gemini bird is ready to fly… and we are prepared to let him (while holding a net underneath him just to be safe).
Watch out, who’s that? There’s a big kid in town. He’s silly and so witty, the happiest kid around. You may not recognize him, he’s much taller than before. No longer just fuzz on his head, he has hair galore. There’s also something else, something missing on his face. Wait, where’s the NG tube? It’s no longer in it’s place. And what about his teeth? Do they look loose to you? It’s true, he has not one loose tooth, actually he has two! Doing so much on his own, as big kids often do, learning how to add and subtract, and now he’s reading, too! He fights bad guys all over town, he’s so brave and so strong. Always there to lend a hand, to help when things go wrong. He’s sweet as pie and kind to all, he talks to all the flowers. He brings the sun on cloudy days, this kid must have super powers!
“The more compassionate you are, the happier you are.” -Dalai Lama