Everything is going to be okay.
As a mother and parent of a child with cancer, this is what I MUST believe. No matter what happens, no matter how bad things look. When Theo gets hurt or is scared and starts to cry, my first response is to wrap him up in my arms and comfort him. It is a natural reaction to want to nurture and protect your baby from the moment they become a part of your life. We will do anything for the helpless little being who is in need of our love and care. We protect the ones we love. We do our best to keep them safe and happy. When Theo used to puke out his feeding tube and freak out before I put it back down his throat, I would smile and tell him, “everything is going to be okay”. When Theo was having an acute allergic reaction in the hospital and the entire 7th floor of the Cancer Care Unit came blazing into the room for the emergency response, Luis looked Theo directly in the eye and calmly said to him, “You will get through this. I know you will because I am your papa.” Exactly what Theo needed to hear, the comfort he needed. It is our job to keep Theo safe and nurse him back to health. Not just physically, but also mentally. We have a responsibility to be there for him emotionally. It has been one of the hardest, most challenging parts of all of this. For Luis and I to wake up every morning, ready to fight, ready to be brave. Showing our best even though we are numb inside. To breathe and remain calm while Theo is screaming in pain, scared, sick, angry, sad, or nauseous. But if we are to stay grounded through the storm, then we need to believe everything will be okay. We don’t back down. We don’t give up. We are in this together.
Right now, everything IS okay! Theo is feeling great. If it wasn’t for the daily oral chemotherapy, I could easily forget that Theo is being treated for cancer. But alas, every day at 7pm comes that sneaky reminder and we have to tell Theo, “time for Zofran”. Then come the Imatinib pills, Mercaptopurine and other meds one hour later. Remember “medicine time”? Remember how difficult it was and how much anxiety it created? Ha! It’s SO easy now!! Theo takes his medicine like a champ, no hesitation, no complaining. Not only that, he enjoys people watching him take his meds. When we stay at Mormor and C’s house (my parents), he asks them to watch so they can see how easy it is for him. When we are in our front yard on a sunny evening and the neighborhood kids are playing outside, Theo invites them to watch, first explaining which medicine he is taking a why. Showing off a little? Sure, why not?! We are so proud of him and he should be proud of himself. He tells them everything. About his most recent visits, getting his port accessed, the names of all the medicines, going to the sleepy room… ALL of it. I dare not interrupt. For if I do, I will get a scowling look from Theo. It is not my story to tell. It is his life, his body, his story, his friends. I love seeing his confidence grow in a new neighborhood around new people. I also LOVE that he can transform his trauma into educating his peers. Maybe Theo should start a blog??
Presently, Theo is still taking only half of his original dose of chemotherapy. In the last three visits, his blood counts have been in range since reducing the dose. Here’s what happened in those last three visits. We returned to the hospital on Tuesday, May 18th. First for physical therapy, then labs and a provider visit followed in the Hematology/Oncology Clinic. Easiest day EVER. Physical therapy was basically 45 minutes of play time with cool new toys. Still no ankle pain and his strength and flexibility are better than ever. Then we saw his doctor. Short and sweet. We didn’t have much to discuss, which, of course is a good thing. Overall, Theo is doing well. He still had an intermittent wheeze in his left lung, most likely related to seasonal allergies, so we were instructed to continue with Albuterol. We returned two weeks later on Tuesday, June 1st for labs, provider visit, and a back poke. Even better! I don’t think I need to emphasize Theo’s excitement for the sleepy time room again, do I? Well, in case you were wondering… it was glorious. Also, his lungs sounded clear and we were told he could stop the Albuterol, finally. But at the first sign of ANY respiratory symptoms, Theo must start using it immediately. His weight gain is appropriate at this time, however, his height has not changed much in the past year. Apparently, kids growth in height will often be delayed during treatment and then spike back up as soon as chemotherapy is done. Something worth noting that I was not aware of. The third and most recent visit was on Tuesday, June 15th. Day 57 of Maintenance. Theo went in for labs and a provider visit. His ANC was 1,666, a slight increase from past visits. Since it was above 1,500, his team of doctors and researchers decided to increase his Mercaptopurine dose to 75%. That’s it. All other chemotherapy remains at 50%. Everything else looks good. Theo is doing well. So there you have it. Nothing else happening. Pretty boring, right? Yes. And we love it.
In other news, Theo is a kindergarten graduate!! He is officially a big first grader this fall at Gordon Elementary in Kingston. Crazy, right?! I can hardly believe it. Theo completed a full year of kindergarten while going through some of the hardest treatment and transitioning into Maintenance. Long hospital visits, feeling icky from his meds, and days of having low energy did not slow him down one bit. He learned how to read and how to write. He had fun doing science experiments and solving story problems using addition and subtraction. He explored the world and the creatures in it, kangaroos, pandas, insects, and the human body. He worked hard at his school lessons and got to participate in kindergarten like the big five year old he is. That is truly one of the few silver linings of Theo having cancer this year. No one was at school, no one was going out to have fun, no one was going to the aquarium! He really didn’t miss out on much. He was learning from home and having Zoom meetings just like everyone else. Wait… did I just say “big five year old”? Correction. I meant BIG SIX YEAR OLD!!! During the time I was writing this blog entry Theo had a birthday. Theo turned six years old on June 17th and we celebrated with a big party at the beach with family and friends over the weekend. Then there was Father’s day the next day. So much to celebrate, so much joy, so much cake! Happy Father’s Day to my honorable dad, my lifelong teacher and guide. Happy Father’s Day to my husband, Luis. The man who does anything and everything for Theo and me. El jefe, my love, and my best friend. Last but not least… Happy 6th Birthday to my hero, the light of my life, Theo.
June 17th, 2021 was no doubt, a spectacular day. We started the day eating blueberry pancakes in animal shapes, requested by Theo. Then he opened presents: a new Spider-Man t-shirt, some orange gooey slime, and a camera. Theo loves taking pictures of nature, so now he can use his own camera instead of filling up the memory on our phones. Next stop was the playground so he could go on the zip line and monkey bars. Followed by a picnic lunch at the beach and some camera practice. The next activity may surprise you. On the top of Theo’s wish list for the day was getting a haircut. He gets so many compliments on his new hair now when we go to the hospital. All of the nurses stop by his room to see how handsome and different he looks now that all of his hair, eyelashes, and eyebrows have grown back. He looks completely different! Theo now pays attention to his hair, asking for hair product so he can style it. So off we went to the barber shop. The first haircut since his hair grew back. No one was allowed to touch his hair afterwards. He wanted it to stay perfect. But the fun didn’t stop there… back at home we had a water balloon fight, ran through the sprinklers, then played with his new slime. His dinner request was steak and mashed potatoes, which he helped prepare with Papa Chef Luis. Before bed, we squeezed in a little more fun by having a dance party and pillow fight while dressed up as mummies (his idea of course). What a day. SO much silliness, smiles, and fun. Last year Theo had barely enough energy to get dressed and wave to friends that walked by. To see Theo as happy as he was on his big day, makes our hearts explode.
In the darkest days of Theo’s treatment, when he was on steroids and feeling his worst, he was a different person, unrecognizable. Theo was swallowed by a beast. You could see a glimpse of his sweet old soul through his eyes, trying to get out, trying to communicate and take back his body, like a prisoner. We knew steroids would change him. We were told that his chemotherapy treatment would be intense. But we did not see THIS coming. We were completely unprepared and mentally thrown into shock and horror by what was happening. Theo tried his best to be himself and be calm. And that’s when it began. “I’m sorry”. My boy. He knew he was not himself. He knew he was angry, irritated, and frustrated, but he didn’t know why. He didn’t want to feel that way but he couldn’t stop it. So when he yelled back at us or cried, or complained, he would immediately follow with, “I’m sorry”. Just like during Consolidation #2. I wrote of a time when he was yelling at me because he didn’t like the chlorhexidine wipes. I had enough of the screaming and dropped the wipes, told him I was done and he could do it himself. That’s when he said, “I’m so embarrassed. I’m sorry Mama, I just want to feel normal”. It broke my heart. He had nothing to be sorry for. He has carried that habit with him ever since. Immediately apologizing even though he has done nothing wrong. When he spills water out of the bath tub, gets crumbs on the floor, or forgets to put his toys away and leaves them on the living room floor. The first thing he says is, “I’m sorry”. He has NOTHING to be sorry for. We all make mistakes. Have fun, live life, and we’ll clean up the mess as we go.
What can I tell you? I want to tell you everything. I want to SHOW you everything. All that Theo is, his spirit, his magic, his unconditional love. This hardship has evolved Theo years ahead of his time. He is so patient. He is empathetic and kind. He is a healer, a lover, and my angel. My breath of fresh air when I am stressed and frustrated. He gives us comfort. When I am stressing out about something, Theo pats me on the shoulder and tells me to take a deep breath and relax. And it works. I always feel better when he comforts me. If Theo can still smile and laugh after all that he has been through, then so can we. Turns out, it doesn’t matter how old you are, how tough you are, or how strong you are. We ALL need comfort in times of agony and despair. In times of intense fear and panic, or when the sharp blade of pain hits. We need Comfort. Security. Hope. We’ve all been there. We all have some pain, anxiety, or fear. Sure, every situation IS different, but the feelings are similar. It’s a part of us, imprinted in our bones, like a fossil waiting to be discovered. I saw a mother and her child in the clinic waiting room one Tuesday morning after Theo and I checked in for his appointment. I know this woman. Her child had just finished Delayed Intensification. Her child was bald and pale, her energy and light faded. It is painful to remember Theo when he was in that phase. He was so recently there, too. I wanted so badly to hug the woman, hold her tight and tell her it was all going to be okay, that she is amazing and strong and her child is a warrior. I remember being that mom in the waiting room, seeing other kids who looked healthy while Theo was near puking in his stroller and thinking, “when will Theo feel good again?” And here we are. So what do you believe? What are you going to do today? Try this: go for a walk, talk to someone, listen to music, SMILE. There is a song that I love. It makes me happy and I tear up every time I listen to it. It is called, This Year, by The Mountain Goats. The next time you find yourself in a tough situation or you’re having a bad day, remember… everything is going to be okay.
“I think there is a hero in all of us” – Spider-Man