Solving the Puzzle

Game shows. I used to watch them at Grandma Ethel and Papa Ted’s house with my siblings when we were kids. In the morning, it was The Price is Right and Family Feud. At dinner time, we would all find a seat in front of the tv and watch Wheel of Fortune, followed by Jeopardy, while eating our food. We knew exactly what time they were on and looked forward to watching them together, always rooting for a favorite contestant and shouting out answers. It was a thrilling race to see who would win or solve the puzzle first. Right answer? You just won the Showcase Showdown! Wrong answer? You lose it all. Sometimes it feels like this journey through cancer is like being on a game show. There have been countless times we have asked ourselves, what do we do? Do we take his temperature again? Do we call the doctor? Do we give him more Miralax? Do we try to insert the NG tube again? With every question comes the horrible thought that if we do not choose correctly, we could make things worse or create a disaster. Like the contestant that “loses it all”. That may sound dramatic, but when you are dealing with a life threatening disease, everything IS dramatic. The most recent dilemma that we have struggled with is deciding whether or not to let Theo go back to school in person. Back in June we had decided he would return to school. Back when Covid cases were slowing down and the outlook was much better with the plan of people getting vaccinated. Hah… that didn’t work out as well as we thought, now did it? Covid continues to spread like wild fire among the unvaccinated and now we have a dangerous delta variant to deal with. The point is, things have changed since June. So Luis and I asked ourselves, do we feel that is is safe for Theo to go to school in person? Safe to be around other kids whose families are not vaccinated? Safe for Theo to go to school with kids whose families do not wear masks or practice social distancing? What should we do??

The answer is… there is no right or wrong answer. The answer is, do what we, Luis and Kelly, feel is BEST for Theo. No one can answer that for us. So it is up to us, Theo’s parents, to decide. We decided to keep Theo home and do online school. At least for now. We also withdrew him from the soccer club this fall. Kids are not required to wear masks while playing outside. When you have a group of six year old boys chasing after a soccer ball, social distancing doesn’t exist. Would Theo be safe playing soccer? Safe at school? Sure… maybe. But we are not willing to take that risk. Why add that stress if we do not need to? Why take that chance? This is what we know. Child cases of Covid are higher than they’ve ever been. Cancer patients that get Covid take longer to recover and can test positive for up to four months. Hospitals are FULL. We are also entering flu season, not to mention all the other viruses out there waiting to make their return in the colder months. Theo getting sick is the LAST thing we want right now. Theo is almost done with treatment. He is so close! Have you marked your calendars?? January 26th, 2022. That’s right. END OF THERAPY!!! His immune system will recover and then we will be ready for him to go back to school. Hopefully he’ll be vaccinated by then, too! Until then, that is our decision. We will be ready to move onto our new “normal” soon. After all, there will always be viruses, bugs, germs, flu seasons, and probably more Covid. Difference is, there won’t always be cancer.

Is it September already? Wow, it really has been a while since the last update. We’ve just been a little busy with some house projects. Building a fence, remodeling a bathroom, building Theo’s play structure, building furniture… just to name a few. Don’t worry, we’ve been squeezing in fun every minute we possibly can. Today we are taking a break from projects so I decided to use this time to write! You’re probably wondering how our five star, all inclusive, four week vacation from the hospital was. It was FANTASTIC. It really gave us time to enjoy summer without thinking of cancer other than the daily temperature checks and pills. Theo has been healthy and happy. We returned to the hospital on Friday, August 13th for labs and a provider visit. Theo’s blood counts were strong (ANC 1,800) so his team increased his dose of Methotrexate to 100%. Two weeks later, on Tuesday, August 24th, we returned to the hospital for another provider visit and his last back poke! Your initial reaction might be, “hooray, that’s great news!” However, not for Theo. He was so sad that it was his last one. As you all know very well, he loves back pokes. So we made this last one special by inviting Theo’s two Spider-man stuffies, aka his “brothers”. Party in the sleepy time room!! It was a great success, especially because Theo’s favorite anesthesiologist, Dr. Carl, was there with him.

During his provider visit on August 24th, I spoke with one of Theo’s doctors about our concerns of Theo returning to school. Some people are so articulate, so communicative and well spoken. That’s her. Giving me the facts while being sensitive and considerate to my emotions and concerns. She is the one who reminded me, there is no right or wrong answer. I think Luis and I already knew that, it just helps to hear someone you trust and respect say it. Theo’s doctors are truly amazing. We appreciate them more than they will ever know. As for the rest of the visit, Theo looked great! His blood counts were strong again, ANC 1,243. His dose of Mercaptopurine was raised to 100%. So now ALL CHEMOTHERAPY is at 100%. GO THEO!

The next and most recent appointment was on Tuesday, September 7th, for labs and a provider visit. Theo’s ANC was 1,500. Excellent. All other blood counts were good as well. This means that Theo is staying strong even with his chemotherapy dose at 100%. There are no signs of Theo’s body slowing down. Not one bit. Theo is an incredibly powerful six year old boy. It goes without saying just how proud we are of him. He has worked so hard for so long. He just keeps on going and going. An unstoppable force. I love listening to him talk to his class and teacher during his Zoom meetings about his cancer. Explaining how the needle goes into his port and how much he loves the sleepy milk. Like he’s talking about something as simple as what he ate for lunch. Theo will return to school… eventually. Fortunately, Theo has wonderful friends and family that he can play and socialize with safely. And a very silly mama and papa who will always play, wrestle, tell jokes and stories, and have adventures with him. We just finished reading Charlie and the Chocolate Factory. I do not know who enjoyed it more… me or Theo. Each night Theo could hardly wait to see who would get in trouble next, and what the Oompa Loompas were going to sing about. Theo is now of the age where we can enjoy more books and movies together, which is super fun. Online school isn’t so bad either. We try to make it as fun as possible. It’s not easy to sit with your learning coach (that’s me) for five hours every day doing lessons, but we’ve got the hang of it. He also started piano lessons with Mormor. He loves it! Theo plays the piano for the dogs every night before they “go to bed”. With Theo in school, Luis busy as always with work, and the never ending house projects, I’d say there’s plenty going on in our day to keep us busy. But never too busy to go kayaking on a beautiful summer day!

So what’s next? Theo’s doctors strongly recommend that Theo get the Covid vaccine as soon as he is eligible, which could be soon! We can hardly wait!! (Remember, we do not say the word “can’t”.) The next appointment is scheduled for Tuesday, October 4th. You may recall that Maintenance phase has four cycles. Well… October 4th is day one of cycle four. Wow, the last cycle! It feels like reaching the third trimester of my pregnancy. My belly so big, body and mind transformed, so excited and overcome with joy with what awaits, I just wanted to get on with it and have my baby already! Cycle four, here we come, full speed ahead!

Sometimes I wish I had a crystal ball that I could look into and see the future. Ha, and how about a genie in a lamp and magical flying carpet while we are at it? Of course that does not exist so I hope for the best and stay positive. We are definitely looking forward to getting back out there, traveling and going to school. Beyond that, we just don’t know. We don’t know what kinds of side effects from chemotherapy Theo will have to live with or haunt him later in his life. The end of therapy does not mean the end of everything. We don’t know what life beyond therapy looks like for Theo. We don’t know what the world looks like 10, 20, 30 years from now! But why worry about the things we have no control over? Control the things we can, like our attitude, our actions, how we treat each other and the planet. No matter what your future may be… be safe, have fun, and smile.

“We are the music makers, and we are the dreamers of dreams.” -Charlie and the Chocolate Factory, by Roald Dahl.