The Happiest Place on Earth

Birthdays with friends and family. A long-awaited vacation. Traveling to a new destination. Your homeland. The beach. The mountains. Your favorite food. Your favorite smell. Your favorite song. What is your happy place? You can feel it in your whole body. A kind of peace that settles over your mind and allows you to be free. Free of anxiety, fear, sadness, pain. It’s a whole-body experience. You long for it, like a drug. When you are there, in your happy place, all of life’s problems melt away and it feels so good.

Two weeks ago, Theo was at camp… for an entire week! Camp Goodtimes located at Camp Burton on Vashon Island. He was busy making friends, singing camp songs, fishing, boating, swimming, polar bear plunging, whip cream fighting, making art, doing archery, sleeping on a top bunk, sleeping under the stars, HAVING FUN! In all of Theo’s life, he had only spent ONE night away from us. The last four years he was practically glued to us. Then, at the age of nine, he went to camp for SIX nights! Seriously, it was weird AND… IT WAS GREAT. We had been counting down the days until camp for what feels like forever. It’s hard to believe it finally happened. Theo was so excited and ready. Me? Definitely excited, definitely nervous. I’m not sure what I was more anxious about. How he would feel being away from us or how I would feel being away from him. I believe it is more the latter. I am so attached to Theo. Constantly thinking about him, worrying about him, planning for him, helping him, laughing with him. So of course, I was sobbing after we dropped him off at camp. I was a mess. Luis and I each gave him one last huge hug and off he went with “Pickle juice” his camp counselor, to check out his cabin. Theo didn’t look back once. He was so ready for this. Camp changed his world. Theo came back from camp bigger, stronger, more independent, more confident, and feeling more alive than ever. He made new friends and wonderful memories.

A lot of people have asked how Theo was able to go to a camp when he still has medications to take. Camp Goodtimes is no ordinary camp. It is a camp from heaven. No really, this camp is like a dream. They have a full staff of nurses who manage all of the kid’s medications, doses, and delivery times. They have a pediatric cancer doctor on site and this year we are so lucky because the doctor at camp was Theo’s initial pediatric cancer doctor from before transplant!! There are 100 campers and 100 counselors/volunteers. That’s one adult per child camper. There are kids attending camp with NG tubes, ports, central lines, physical limitations, and of course lots of medications. The point of this camp is to give these kids an opportunity to forget about all of that. These kids, who have been through so much pain and trauma. This is their chance to have fun, just be a normal healthy kid and not think about treatment or the hospital or being sick. Siblings are also welcome to come to camp because cancer does not just affect the patient. It affects the whole family. Most of the counselors themselves were once campers. Luis and I can see that future for Theo. Going to camp every year until he’s 17 years old and then he can be a counselor. This year the camp theme was Monster Mash. Kids got to bring costumes and go trick-or-treating around the cabins. Really, on top of everything else, they got to dress up in crazy costumes. Somebody pinch me, is this for real?

We couldn’t wait to pick up Theo and give him the biggest hug. Theo on the other hand, could not wait to introduce us to his new friends. He was so busy fist pumping, hugging, and doing secret handshakes with counselors and campers. These are not your typical friends. These kids bonded, as if they had all known each other their whole lives. These kids are so kind and so good to each other. Covered in dirt and sweat, their smiles said it all: Camp Goodtimes is the happiest place on earth.

Speaking of good times, that’s exactly how I would describe our summer so far. And what better way to kick off the summer than with the news of 100% donor cells in Theo’s bone marrow!! It was confirmed again after his bone marrow aspirate on June 5th: NO LEUKEMIA. 18 months post-transplant and Theo’s bone marrow is still doing great. His immune system is stronger than ever. Usually, Theo would be thrilled to have a back poke. Unfortunately, this back poke happened to be on the same day as movie, pajamas, and popcorn day at his school. You all know how much Theo loves back pokes, right? Honestly, I never thought he would rather be somewhere else, but his heart sank when he found out what he’d be missing at school. Not to worry, “there is always next year” we told him. Now, that’s easy to say to a kid who has been going to school continuously for many years. Of course, they know there is always “next time”. For Theo it’s different. His plans to be back in school have been delayed so many times, he isn’t sure what to expect. To him, everything is new, and he is finally experiencing all the wonderful things of being a kid. He fears that if he misses out on anything he will never get another chance. Which, is why it was such a bittersweet end to the school year.

In two short months, Theo found another happy place: his classroom. We weren’t sure how well he would handle the transition back to school. Sure, he had been doing online school, but that is nothing like being in a classroom. In the words of his teacher, Theo was “drinking from a fire hydrant”. But Theo did not drown in the water. Instead, it gave him power. He loved it. Instead of feeling overwhelmed, he felt challenged and confident. More independent and self-sufficient. He was so disappointed for school to be over so soon after he had arrived. Except for the getting up early part, he was not sad about that. He was looking forward to sleeping in again, just like his mama! This fall he will attend full days of school as a fourth grader!!

All that sleeping in is helping Theo’s body grow. So we want Theo to take advantage as long as possible. His body is still going through a major growth spurt, catching up for lost time while on steroids. We will find out in October at his next visit with his endocrinologist how his growth hormones are doing and see just how much he’s grown in the last three months. His thyroid hormone level will also be checked to see if any changes need to be made to his Levothyroxine dose. Theo’s endocrinologist mentioned that he can be given growth hormone if his levels are low. However, that is NOT an option we will go with. Theo’s BMT doctor does not support the idea of giving Theo growth hormone due to many studies that have shown that growth hormone can increase the risk of leukemia relapse. Therefore, we will stay FAR away from adding growth hormone to his medication list.

Rest is especially important because Theo is still coughing. The mystery continues. Are we making this a bigger deal than it really is? Could we just say that sometimes when we get a cold or virus, a cough lingers and can take weeks, even months to resolve, and that’s probably all this is? Sure. But Theo is not like you or me. We can NEVER just assume it’s a lingering cough from a virus. Why? Because of what Theo has been through. Because he is recovering from a transplant. Because it is dangerous to assume anything and risk missing something that could actually be much worse for Theo’s health. Remember; Theo has a TEAM of doctors looking after the health of his entire body. Everyone is consulted and plays a role in every decision when it comes to making changes. For example, Lisinopril (blood pressure medication) is known for causing a dry cough in some patients. Theo has been taking this medication daily for almost two years, but it was worth a shot to see what would happen if the medication was removed. Theo’s BMT doctor had to consult with the cardiologist, the nephrologist, and the pulmonologist so they could all agree on this plan. Within one week, Theo’s cough improved. Not completely, but it was noticeably better. Elementary, my dear Watson.

Thinking like real detectives now, we wondered what else could be contributing to this nagging cough. Theo is still using a steroid inhaler twice daily until his next pulmonary function test in October. But it hasn’t helped the cough. Theo’s pulmonologist thought it could be acid reflux or heart burn. Theo did a one-month trial of taking Omeprazole every morning. Initially the cough improved. We were shocked! But it was short lived. Some days were great, other days Theo was waking up at 6am coughing for 30 minutes straight. Well, it must be allergies then, right? HA! On June 20th Theo saw the allergist for a full allergy test. The one where they poke your skin with all the different allergens. Theo did not have one single allergic reaction. Nothing. At least now we know he’s not allergic to anything! Hmmm, how about a sinus CT scan? Nope, nothing to see there, other than a deviated septum, which, apparently is very common. The CT scan showed no sign of sinus blockage or build-up of mucus causing post-nasal drip. More good news, right? Next on the list is to see the ENT doctor so they can put a scope down Theo’s throat and see if there is something causing the feeling of “something stuck” in his throat, as Theo says. Unfortunately, that appointment will have to wait, as there are no openings in their schedule until December. In fact, we were supposed to wait until December for the allergist as well, but they had a last-minute cancellation that got us in early. Crazy, isn’t it. How does anybody get seen by a doctor these days? With wait times as long as four or five months, you’d better hope your symptoms resolve on their own. So that is exactly what we have been doing. Hoping Theo’s cough goes away over time. It actually improved drastically after camp. Theo left for Camp Goodtimes still having morning coughing fits. When he returned from camp on July 20th, he was barley coughing at all! Surprised? Hardly. It’s a magical camp, remember? It doesn’t just heal the soul; it heals the whole body! It seemed as though the worst of that darn cough was finally behind him. Good riddance you nasty bugger! Now, as long as Theo doesn’t get…

COVID!!!! Seriously?!? Unbelievable. After four years of successfully avoiding COVID, it finally got him. We found out on the morning of July 30th, during a visit to the emergency department at 2:30am. Theo woke up with a high fever. OK, no worries, we thought. Theo is no longer taking immunosuppressants and he does not have a central line. We were expecting to just monitor the fever from home and start stress dosing of hydrocortisone. We were wrong. Turns out, Theo still needs to go to the emergency department if he gets a fever. Why? Because he is still taking hydrocortisone to help regulate his body. He is currently at the very end of his hydrocortisone taper, taking only 1.25 grams a day and scheduled to finish on August 3rd. After a couple of days of not having any hydrocortisone in the body, a cort stim test is done to determine if Theo has adrenal insufficiency. If he does, then he keeps taking hydrocortisone. If not, then that means he has normal adrenal function and he no longer needs the hydrocortisone. Until then we have to be extra safe during times of sickness or injury.

Currently, Theo is feeling much better. He has no fever and good energy for the most part. He tires easily but that will improve as he recovers. Unfortunately, after almost a year of fighting off that annoying cough, it’s back and more aggravating than ever. What can you do? Theo knows what to do. You keep going. Keep playing, laughing, smiling. He’s not going to let anything get in his way. There is too much fun to be had! And since Theo is a nature boy like Luis, they will always find something new and exciting outdoors. Theo likes archery, so Luis made him a bow and arrow (made in less than 5 minutes). Theo wants a pet frog, so Luis built a pond in the backyard to attract wildlife. There is always a solution. Always something fun to make or do. Already this summer Theo has been swimming, frog hunting, tad pole collecting, canoeing, fishing, camping, hiking, rock climbing, and more. We finally had a long overdue visit with family in southern Oregon to play on their farm. Theo got to help feed the mule and horse, and check out the lambs, ewes, chickens, and explore the massive vegetable garden. (Seriously, the garden is bigger than our house.) What a difference a year makes. Last summer Theo could not even walk barefoot on the beach! He also performed beautifully in another piano recital, learned about and explored sea life during low tide, and he made his FIRST basket on the basketball court!! Thanks to coach Pops and all their hard work. They are my dream team, my special forces unit, my secret weapon, and my treasure. Luis and Theo are my happy place.

Recently, someone told me that maybe I don’t want to think about this (cancer) anymore. Maybe I just want to be glad that it’s over, move on with our lives and forget about it.
What?!? Are you crazy? That is the exact opposite of what I want to do. You don’t just FORGET about cancer. You don’t just move on. No way. Cancer is now a part of our story and will forever be. I started writing this blog as a way to share our story, the treatment, the ups and downs, and all the big updates. Now that Theo is healthy and strong and back in school, I don’t have as many updates to share. Theo is doing GREAT! There have been no major concerns with his blood counts. His doctors are thrilled with his progress. His immune system is strong, and he is getting his vaccinations. He will need to be seen less and less as he gets farther away from his transplant date. Therefore, I will have fewer updates, which, is why I have decided to make this my last blog entry about our cancer journey. But don’t worry, I’m not leaving. I’m just taking a break and following the advice of many to WRITE A BOOK!! I truly deeply enjoy writing this blog. It is my therapy. But it’s time I take it to the next level, by turning this blog into a book. A book that can be read by other families, patients, and people affected by pediatric cancer. My hope is that by writing this book, I can reach many more families. Will it help? I sure hope so. It’s going to be A LOT of work, and I have so much to think about. Am I crazy? I’ve never written a book before. The more I learned about the process, the more pressure I felt. I became overwhelmed and lost. Overthinking every aspect. What if my book is a total failure? My worries were put at ease and a sense of relief rushed over me after listening to the advice of a wise Alaskan explorer. I’m not writing this book for you or anybody else. I’m writing it for ME. Wish me luck!

Before all of this. CANCER. I didn’t know anything about the foundations, support groups, cancer research organizations, or volunteering for pediatric cancer patients. Nothing. Because it wasn’t a part of my life. I never volunteered, donated or helped raise money for research and care. I never even donated blood! Now, after everything we’ve been through. After everything Theo’s been through. I would give anything, do anything, volunteer, give blood, whatever it takes, to help and support pediatric cancer patients… because there are so many that need it. They need all the help and support they can get. If Theo is a part of your life, then supporting foundations that help pediatric cancer patients should be an easy decision. You can give blood. You can donate to cancer research. You can help in any so many ways! The Fred Hutch OBLITERIDE is happening Saturday, August 10th. Our good friend, Sue, is riding again and kicking butt! She has been working hard to raise money for pediatric cancer research. Sue always goes above and beyond to help people in need, especially Theo. An easy way to help now is by making a donation to Sue’s fundraising page for Fred Hutch pediatric cancer research. Here is the link: https://shorturl.at/Y3Qbz Theo will appreciate it.

Thank you to everyone who has been following my blog. Thank you for the positive, uplifting, and supportive feedback. I never imagined this blog would be read by so many. I certainly never imagined that writing this blog would help me as much as it did. Through this blog I discovered a love for writing and a way to cope. One day this blog will belong to Theo. After all, he is the hero of this story. Theo is light, he is happiness, he is LOVE. Be good to each other and be good to yourself. The journey is not over… it’s just the beginning of a new chapter.

“I don’t know where I’m going from here, but I promise it won’t be boring” – David Bowie