The Detour

I remember one of my first trips with Luis to Mexico. I was so madly in love with him (and still am) and I was craving adventures with him that I had only dreamt about. I had never been to Mexico and knew next to nothing about our neighbor to the south other than its touristy vacation spots. The opportunity to travel with him, in his country, to experience his culture, and meet his family, was something I could hardly wait for. We planned a trip to visit family and friends, making several stops on our journey. We started in Guadalajara. After spending a few days there, we drove to Aguascalientes and stayed there for a few days. Then we drove to Melaque, a magical beach along the Pacific coast and spent another five or six days there. Our trip ended with a couple of days in Puerto Vallarta (about a three-hour drive north of Melaque), and then finally a drive back to Guadalajara. It was a BLAST. Tired and happy from our adventures, we packed the car and headed towards the highway. As we were leaving Puerto Vallarta, we came to a crossroad. We asked for directions and followed signs that we believed would take us to the toll road, the faster route to Guadalajara. Oops! We ended up on the carretera libre; the much slower route that wanders along the landscape through small towns and villages. By the time we realized we had taken the wrong road, it was too late to turn around. Our three-hour drive to Guadalajara had suddenly turned into six hours! It would not have been a big problem except we had a flight to catch out of Guadalajara in less than six hours. At first, we panicked. Obviously, we were not going to make our flight as planned. So what did we do? We drove slowly enjoying the lush mountain view, past small villages serving the most delicious tasting barbacoa and fresh mango juice. We were mesmerized by the beauty of the jungle and the secrets hidden inside of it. We took advantage of seeing a side of the country that we otherwise would never have known.

Recovery continues…

Good news: Theo’s liver is happy!! And if Theo’s liver is happy, then WE are happy. Finally, Theo is back on track on the road to recovery to have a strong immune system. In my last update, Theo had started taking a new steroid sparing agent to treat GVHD, called Ruxolitnib. It has so far been very successful. Since starting the Ruxolitnib, Theo’s liver has been slowly improving week by week, becoming less inflamed. His cholesterol levels have also moved closer to normal range, reflecting better function of his liver. Theo started a steroid taper of 5mg every five days. We marked off every day on the calendar, looking forward to the last day of steroids. After three very long hard and hungry months, Theo finished his last dose of prednisone. That’s right, Theo is currently DONE with steroids!!! Theo’s doctor recently wrote in her notes, “Due to stability and overall great improvement of his chronic GVHD, and because he has been tolerating his immune suppression weans, we will move clinic visits to every two weeks, but continue weekly labs for now.” Theo’s IgG level has been borderline low, a side effect of the Ruxolitnib, but will continue to be monitored for repletion. Theo is also at high risk for viral reactivation and highly susceptible to infections. However, overall, things are moving in the right direction.

What a huge relief and weight off our shoulders to be done with steroids. Steroids have been a massive stress not just on Theo’s body, but also in our lives! We, Theo especially, are so absolutely thrilled that he is done. Hopefully forever. Steroids are awful! At the beginning of July, Theo weighed 27.5kg. Today, Theo weighs 38.5kg. That’s a solid 25 pounds heavier in only three months time added onto his small four-foot frame. His entire body swelled up like he’s had some terrible allergic reaction to a bee sting. His cheeks are so thick and puffy that he started biting the insides of his cheeks. The cheek bites became painful sores in his mouth that made it hard for him to eat and brush his teeth. His belly sticks out so far, he can’t fit into his clothes, and he has the back pain of an old, retired athlete. He no longer has the body of an eight-year-old boy. It has transformed into something completely different, something foreign. Does it bother me? Absolutely. It hurts to see him struggle to move, to barely be able to walk up a set of stairs, to see him examine his body in the mirror and ask me, “will I look normal again?”. I know it bothers him. How much? I’m not entirely sure, but enough that he doesn’t want to have a belly while wearing his Spider-Man costume on Halloween. Theo is an active kid. He loves to play sports, to practice his “spidey moves”, and to move his body! So it does not surprise me to see him so determined and motivated to lose weight. He plays tennis every day it is not raining. And when it is raining, he does workouts with Luis and me at home. We have daily dance parties and daily walks. He knows that the steroids are to blame and reminds us every day that this is temporary. He knows that eating healthy and daily exercise will get him back in shape in no time. Theo is my coach, my trainer, and my inspiration.

I’ve said this so many times, but Theo has the BEST attitude about everything. He is Mr. positive, sunshine always shining, glass half full kind of guy. Every time something doesn’t go as planned or we have a setback, Theo is the one reminding us to stay positive and take a deep breath. He is the one that shrugs his shoulders and moves on while I am fighting back tears and swallowing a fire ball of stress. When we recently found out that his PICC line would not be coming out until December, he was okay with the news. Me, not so much. DECEMBER?!?! I know, I know. It’s just around the corner, but we were expecting it to be out by now! It was originally placed on July 28th. That is almost three months ago. We were initially told that Theo would have the PICC line for one month, maybe two months. He needs it to receive IV anti-fungal medication that won’t irritate his liver. It makes sense. Theo’s liver has been doing so well after being so inflamed. We do not want to take any chances. Whatever we do, we CANNOT upset the liver. The liver is like a drug lord mob boss who gets pissed off easily if you do the wrong thing or mess up. If you know what’s good for you, you know that you do NOT want to upset a mob boss. What the liver needs right now is to continue healing. If we change Theo’s IV anti-fungal medication to an oral medication, we risk irritating the liver. Better to just wait a little while longer until we know it’s safe to change meds.

This week Theo had another good check-up with his doctor. His liver is continuing to heal, and his ALT has dropped down into the 60s!! Incredible. The next medicines to go will be the Beclomethasone (a topical liquid steroid to coat his stomach) and the steroid inhaler, Symbicort. Theo has been using the Symbicort inhaler twice a day since July, initially as a response to his shortness of breath and upper respiratory tract infection from the adenovirus. Within the last three months, he has had two pulmonary function tests to examine his lung function. Test results reveal a decrease in the percentage of oxygen and carbon dioxide diffusing through his tissues (from 92% in July, to 68% today). Alveoli, the grape-like sacs at the end of the bronchioles in your lungs, move oxygen and carbon dioxide into and out of your bloodstream. The doctors believe that Theo’s lungs have also been affected by GVHD due to this drop in percentage. And it is very likely that the tissue lining of the alveoli are thicker as a result of the GVHD and therefore not able to diffuse oxygen and carbon dioxide as easily. There is no serious concern about this right now, but there is good reason to follow up in a couple of months to see if there are any changes. For now, Theo no longer needs to use the inhaler! The pulmonary function tests also reveal that Theo’s lungs have great elasticity and volume capacity. In other words, his lungs are also happy.

When Theo had to go back on steroids and high dose immunosuppressants to treat GVHD, it felt like we were starting all over again. Like encountering a roadblock just before the finish line and being forced to take the detour. A very long detour. This first year of recovery has been so much harder than I ever expected it to be. I find myself becoming impatient with the year taking so long to get over with. It seems foolish to want time to hurry up, but we’ve truly had enough of this year and the anxiety it has carried with it. Does it ever get easier? While ending steroids is not the end point, it is certainly one step closer to Theo being healthier and stronger. After removing Beclomethasone and Symbicort, the next steps will be tapering the Tacrolimus, then the removal of the PICC line, and finally tapering the Ruxolitnib. After he is off the immunosuppressants he’ll be ready for vaccinations and be able to return to school. We were recently told, that due to the GVHD and starting steroids again, Theo would be able to return to in-person school “maybe by springtime”. Are you kidding me!?! Again, my heart sank, deep like the Titanic. We were so hopeful for him to go back in the fall, or even winter. But then, he got GVHD. REALLY bad GVHD. It feels like all year we’ve been chasing this destination where the journey ends. This magical moment when Theo is all of a sudden back to his normal life and we are traveling and going places again. But honestly, there is no finish line. This is a lifelong journey for Theo. YES. Life will get easier. He will grow strong and accomplish all he ever dreamed of. But he will always have to be monitored and cautious of the long-term side effects of his treatment. Every time our expectations are not met, every time we are disappointed about the delay in recovery, every time we don’t get the news we want… my heart sinks. It takes all my energy to keep my spirits high and smile and laugh. But then I tell myself, it’s just a detour. Theo will get to where he needs to be with time. It’s just time. Time we have together. Time for us to do more art projects and play tennis together. Time for him to sleep in, snuggle a little longer, read a little longer, and not rush… a little longer. This is the path we are on, so we might as well drive slow and enjoy the view.

“I love fall. The cooler weather, eating warm soups, all the beautiful fall colors. Oh yeah, and Halloween!” – Theo Avila