The Greatest Thing

What is the greatest thing you have ever done? Did you travel the world? Finish a race? Graduate from school? Perhaps it’s not ONE thing you did that’s great. Perhaps it’s MANY things you do every single day. You got the kids to school on time. You solved a problem at work. You played a piece of music perfectly, after months of practice. No matter how big or small the task at hand, we do great things every day. In a world where there is war, and corruption, and lies, it might be hard to see it. But I see it, all the time. I see it in the blood donors, the activists, fundraisers, researchers, and teachers. They are saving lives every day! I see it in people who volunteer, like our friends Sue and Kevin from Make-a-wish, who go out of their way to help others in need. Can you believe they came to the airport with us on a busy Monday morning and sat at the gate with us while we waited to board the plane to Hawaii? Who does that? Theo sees it, too. He knows there are people out in the world doing great things every day. In fact, he is one of them. Theo has and will continue to accomplish many great things in his life. While in Hawaii, Theo got to swim with dolphins! It was pure magic. An extraordinary experience he will never forget. Theo will tell you how they felt like smooth rubbery plastic, how he got to hug them, feel their heartbeat, and all the amazing tricks they did for him on command. He told us, “Swimming with dolphins is the greatest thing I’ve ever done.” Yes… and beat cancer. That’s pretty great, too.

We made it to spring! Felt like forever, but we made it none the less and boy does it feel GOOD. Theo is now 17 months post-transplant and back in school. It’s been a long time coming. Waiting, anticipating, hoping, struggling, rebuilding, rethinking, retesting, replanning, repeat. Now, here we are, and I can’t stop smiling. It feels like we made it to the top of Mount Everest. Looking down the mountain, back at everything we’ve accomplished, it is hard to believe sometimes we were once at the bottom looking up.

Let’s all take a moment to enjoy the view…

Theo’s whole body is hard at work 24 hours a day, seven days a week. Transforming as he continues through another phase of recovery. During the month of March, we noticed that Theo was sleeping more than usual. Sometimes sleeping in until 9 or 10am! At first, we thought that maybe he was fighting a virus. But then it occurred to us that he might be going through a growth spurt. At Theo’s endocrinology appointment on April 8th, we were told that Theo was growing at the velocity of a 13-year-old going through puberty! He grew one inch in one month! Holy smokes, no wonder he was sleeping so much. He’s also lost 10 pounds since October of last year. It’s like he’s eaten a piece of candy from Willy Wonka’s Chocolate Factory. One minute he’s blowing up like Violet, the next he’s stretched out like Mike TV. Theo has had several different looks throughout his treatment. Now, his body is finding balance. His hair is back to being full and curly, his cheeks (still red) are slowly returning to their usual tan and deflating and becoming soft again. Theo’s endocrinologist is happy with his growth and thyroid hormone levels. The next step is tapering off the hydrocortisone very slowly. We started the taper on April 9th. Theo is currently taking 5mg in the morning and 2.5 mg in the evening for a total of 7.5mg a day. The dose will decrease 2.5mg every month. His last dose of hydrocortisone is scheduled for July 22nd. Then he will have an ACTH stim test one week after weaning off to check his adrenal glands. If Theo becomes ill or has a fever, he will need stress dosing of hydrocortisone to regulate his body until we can confirm that his adrenal glands are awake and functioning properly. Here we go!

On March 5th, we met with the nephrologist to discuss Theo’s kidney function. I was tense and anxious as I was expecting an overload of information. I braced myself for the impact of a crash… but, it never came. I stopped holding my breath and took a deep sigh of relief when she told us that she has NO CONCERNS for Theo’s kidney health. Previously, there had been some slight concern based on Theo’s elevated creatinine levels, however, creatinine is an imperfect measure of kidney function. Also, Theo is taking two blood pressure medications (Lisinopril and Carvedilol), which, can elevate creatinine levels. With Theo’s blood pressure in target range, in fact, even a little low, the nephrologist recommended lowering his blood pressure medications. Great news!

Before Theo’s blood pressure medications could be reduced, we needed to follow up with his cardiologist. On March 5th, Theo had an echocardiogram and an electrocardiogram to check heart function. On March 12th, we heard the report from the cardiologist: Theo’s heart is strong! His heart function is in normal range and is remodeling beautifully. She had NO CONCERNS and recommended lowering the dose of both medications for optimal heart function and remodeling. Theo is now taking 5mg and Lisinopril and 3.125mg twice a day of Carvedilol. Eventually, the anticipated plan is that Carvedilol will be lowered again, and Theo could possibly be back to taking just the 5mg of Lisinopril.

For the first time in four years, Theo got to see his primary care physician for a wellness visit. It felt so strange to be going to a doctor’s appointment that was NOT at the hospital. So easy, so casual. Theo had been looking forward to seeing his doctor, who he admires very much. Turns out, his doctor feels the same about Theo. In fact, he showed Theo his desk and hanging next to his computer is a picture of Theo, on his 5th birthday, bald and smiling with and NG tube in his nose. He told Theo that the picture has been hanging there ever since he received it almost four years ago. So, every day he comes to work, he can think of Theo and be reminded of how brave and strong he is. I just about started to cry but I’ve learned to keep my composure over the years. It was a wonderful visit, a reminder of the support that will stay with Theo through his childhood and teenage years. Theo also started his first round of pediatric vaccinations!! Something we had all been looking forward to. Getting the first vaccinations means being able to swim again! It also means feeling a little more at ease knowing that Theo has the protection he needs against terrible viruses and disease. Building up a strong defense one shot at a time.

Theo is also working on building up eye strength. In December 2023, we found out that Theo is far sighted. Theo was given a prescription to wear glasses and was told that if he wore the glasses most of the day, there was a chance his vision would improve. At his recent visit with the ophthalmologist on April 24th, we were told his left eyesight has improved with wearing the glasses, but not with his right eye. There is some minor scar tissue on the retina of his right eye, most likely caused by the radiation he received prior to transplant. The ophthalmologist is not too concerned about the scar tissue and reassured us that it has not gotten worse since our visit in December. He did, however, recommended for Theo to wear an eye patch over his left eye two hours every day for the next three months to see if it will help strengthen his right eye. There is a very small chance it will help, but definitely worth a try. Besides, pirates are cool, right? Plus, the ophthalmologist actually encourages Theo to play video games while wearing the eye patch! Theo’s face lit up. Eyepatch? Video games? Done deal.

Our most recent visits at the hospital have been to follow up with the pulmonary clinic. On April 8th, Theo had new pulmonary function testing (PFT) done. It didn’t go as well as expected. It felt rushed and confusing. The pulmonary tests are known for being complicated. The patient has to follow a series of very specific breathing instructions over and over again, taking deep breathes in and holding them for long periods of time, then quickly exhale, then a quick breath in… sometimes from within a closed chamber while breathing through a tube. Like learning to play the trumpet and having to master it on command. It is the best and only way to check lung function. But this time, something wasn’t right. The clinician running the tests with Theo that day also seemed confused and was having a difficult time recording the results. He asked for help from another clinician, but it didn’t seem to resolve the issue that Theo was having a hard time following his instructions. Later that week, Theo’s provider called me to inform me that Theo’s pulmonary function results were in. His lung function had declined. They wanted Theo to redo the PFTs and see the pulmonary specialist. I couldn’t help but wonder, was it Theo’s lungs or a testing error?

Well, on Tuesday, April 30th, Theo repeated the PFTs. To our relief, his lung function was back in normal range. Prior to Theo’s transplant, Theo’s lung function was at 100%. One year post transplant, Theo’s lung function was down to 85% and remains there today. That’s completely normal for a transplant patient, expected even. The good news is that over time and with vigorous daily exercise, Theo’s lungs have the potential to function at 100% again! As long as Theo stays clear of viruses and respiratory infections, that should not be a problem.

Vigorous exercise is absolutely NOT a problem. Theo loves sports, to run, swim, climb, bike, and play! He gets us sweating with his very own “workout challenge” doing burpees, mountain climbers, wall sit, caterpillar walk, and frog jumps. Just the other day he did a wall sit for five minutes. It feels good for him to do challenging things, especially things that even Luis and I find difficult. It gives him confidence knowing that he is getting stronger. Theo knows his body. He understands that it takes time to build endurance and strength to run fast, jump high, and play as hard as some of the kids at recess. While on recess duty one day, I observed (very casually) how Theo didn’t join the other kids playing soccer or kickball. Instead to kept to himself, mostly walking around or bouncing the basketball. At first, I was worried. Why isn’t he playing with his classmates? I started to feel bad for him. But I know better. Theo knows better. Gosh it had only been two weeks since he started school. What did I expect? He still gets winded walking up a set of stairs. His run is more like a wobble, and it’s hard for him to jump. Of course he needs time. Like I said, he knows his body well. He is no fool either. He told me in the car ride home that day, “Mama, I’ll play soccer with those kids when I’m ready. When I want to.” He is light years smarter than I ever was at that age.

What about viruses??? Hmmm that’s a bit tricky. We are done living in a bubble. Viruses are out there; we just have to do our best to protect ourselves. Even when we were living in a bubble, Theo got sick. Just this past January he had rhinovirus (common cold). Unfortunately, when Theo gets sick, it takes longer for him to recover. Especially when he was on immunosuppressants. Since January, Theo has been coughing. Not a lot every day, but enough that it makes us wonder: Is it the virus hanging on or is there something else going on? It is the mystery of the year. The topic we can’t stop talking about. The conversation that never ends and never resolves. (At least this time it’s not about his stool or liver). What is the cause of Theo’s cough? Some days he wakes up with a coughing fit and it’s done. Some days it’s like scattered showers throughout the day. A little bit in the morning, some more during the day, and a little more at night. The good thing is that the cough doesn’t wake him up at night and it doesn’t seem to be coming from deep in the lungs. It’s a dry cough, an itch in his throat that can’t be scratched. The only thing that helps is drinking tea. The pulmonologist does not think there is any sign of GVHD in Theo’s lungs, but just to be on the conservative side of things, he instructed Theo to start using the Symbicort inhaler again twice a day for the next three months. If anything, it will help by reducing any inflammation that might be in the lungs. Then in three months we will redo the PFTs and see if his lung function has improved. Theo’s provider has also advised daily saltwater gargles to help cleanse his throat and cough drops in the morning to soothe the itch. Hopefully, the cough will eventually simmer out and we can move on from this pest. If it doesn’t, we will consult with the speech therapist to see if it’s a swallowing issue. It’s a stretch, but at this point we are willing to try anything!

My thoughts were that the salt water and tropical Hawaiian air would relieve Theo of his nagging cough. Unfortunately, no. But it did heal us in other ways. Hawaii is such a magical place, full of wondrous nature. Theo, being a nature boy, was in his element. Like nothing he had ever experienced before. Every flower, every animal, creature, smell, and sight had Theo shouting with excitement. Our second day there we went to a snorkel beach. Luis (also an animal whisperer) saw a sea turtle while swimming out by the reef. It swam right under him for almost five minutes. Luis was in awe, appreciating every moment this beautiful creature was in his presence. Theo was of course very jealous. But as Luis promised, Theo saw three sea turtles the next day. I think Luis spoke to the sea turtles and made a deal. Luis always finds a way to make even the impossible possible. Like magic. We couldn’t get enough of it. Theo woke up every morning at the crack of dawn, “ready to seize the day.” Each day was packed full of action and fun. We swam in the pool every day (for hours and hours until our toes turned into raisins), snorkeled with the tropical fish and sea turtles, soaked up the warm sun, ate whatever sounded good (and it all sounded good) and swam with dolphins. The Hawaiian Cultural Center had free events every day that we could attend. Like making leis, necklaces out of kukui nuts, art projects and more. On our last night in Hawaii, we went to a luau. What a show! It was a perfect way to a perfect vacation. Except that the hula dancers did not invite Theo onto the stage to dance. He was a little disappointed about that. It was all for Theo. His trip, his wish. Luis and I were honored to just tag along. Theo is already asking when we can go back. Hawaii gave us time as a family to relax… truly relax and let go, have FUN. A healing of not just our minds, but our hearts and souls. A recharge of energy and strength needed for the start of school and the beginning of new adventurers.

Take your mark, get set, GO!! And off Theo goes, full speed ahead. Hawaii, school, friends, field trips, bus rides, and coming up this summer… camp! All the things, all at once. I think back to all his “firsts” as a baby: first smile, first laugh, first word, first walk, first tooth, first day of daycare. It’s that feeling all over again. It’s a bit overwhelming for me at times, but not Theo. He’s ready. Diving in head first. He LOVES school. Just this past Friday, there was grandparent’s day at school. Theo could not wait to show Mormor and C around. He performed in a tap dance recital and sang with his class in the spring concert. He’s only been in school four weeks, and already he is performing with his class! It was a wonderful day where I found myself more often than not, crying tears of absolute happiness. I have to pinch myself to know this is real. Theo is currently attending half days, only in the morning. As much as he wants to stay for the full day, he just doesn’t have the stamina for it. By lunch time his brain is scrambled eggs. Think of how hard his brain is working! It’s receiving an overload of information, soaking up everything in the classroom, the students, the routine, the assignments. Theo gives it his all. Even his teacher (whom we also love) notices how hard he works. Theo really likes her and admires her so much. He likes that she is “tough”. She, along with many of the teachers and staff at Theo’s school are incredibly supportive and encouraging. They go out of their way to make Theo feel welcomed and empowered. Theo’s teacher told Luis and I at our recent meeting with her, “If a child has a happy heart, they will succeed in school. I want to make sure Theo always has a happy heart.” I wanted to give her the biggest hug. Every day when we pick Theo up from school, he gives us the full report. Who he fist pumped, what book he chose to read during reading time, what the other kids ate for lunch, something funny he or a friend said (Theo is a comedian, he is always being funny), or who helped who in class that day. He is in a loving place, an environment where peace and harmony are everyday goals. Every day, mine and Luis’s smiles grow bigger. We also signed him up for Camp Goodtimes this summer. A weeklong crazy fun time for pediatric cancer survivors. It’s going to be amazing for Theo. A time to be with kids who understand him, who he can relate to completely. A chance for him to reconnect and grow. There’s nothing better in this world than seeing Theo thrive and be happy. Without a doubt, raising Theo is the greatest thing we’ve ever done.

Thank you to everyone who donated to the Leukemia and Lymphoma Society during The Big Climb. Next up: Obliteride! Coming this August, raising funds for Fred Hutchinson Cancer Center. Thank you blood donors and volunteers. Thank you, family and friends. And most of all, thank you Luis, my love who always keeps me laughing and carries our family. Theo gets his wisdom from you. We might be at the top of Mount Everest, but we are not done climbing. The adventures are just beginning. And all the while, Theo’s theme song is playing… (turn up that volume and sing it with me loud!)

“Tonight, I’m gonna have myself a real good time. I feel alive. And the world, I’ll turn it inside out, yeah and floating around in ecstasy so DON”T STOP ME NOW. DON”T STOP ME cause I’m having a good time, having a good time. I’m a shooting start leaping through the sky. Like a tiger, defying the laws of gravity. I’m a racing car passing by, like Lady Godiva I’m gonna go, go, go there’s no stopping me. I’m burning through the sky, yeah. Two hundred degrees, that’s why they call me Mister Fahrenheit. I’m traveling at the speed of light. I wanna make a supersonic man outta you. Don’t stop me now!” – Don’t Stop Me, by QUEEN