Resilience and Hope

We are HOME for the holidays! The tree is up, the lights are strung, the house is decorated, and the Christmas music is playing 24/7. It feels so good to be home with my lovies. Especially after the year we’ve had. It’s hard to believe that at this time last year we were living in the hospital for Theo’s bone marrow transplant. Gosh, has it already been a whole year?!? Looking back at that time, it’s hard to even imagine. Theo was in so much agony, he was completely broken. The days were unbearable. A complete nightmare. I cringe when I think too much about the details and have to tell my brain to shut the door to the memory of those days. I just want to think about TODAY. I want to savor the days of being able to breathe easier. I want to let go of some tension and take a break from looking over my shoulder and instead look towards a bright future. I want to celebrate how far Theo has come and how much he has accomplished. Our warrior and champion. ONE YEAR.

This past year was no easy ride. It turned out to be much harder than we ever expected. I recall a conversation I had before Theo’s transplant with another mother whose child had recently had a bone marrow transplant. She told me, “The first year of recovery is long, much longer than you think.” Boy was she right. This year seemed to have no ending, no forgiveness. GVHD and steroids certainly didn’t help. Theo finished steroids on October 11th, thank goodness!! That was a HUGE relief. Steroids had basically put a stop to his recovery, like Theo was frozen in time. Since then, Theo has been moving fast to get back on track. All the testing that was done pre-transplant to evaluate Theo’s entire body has been redone in preparation for Theo’s one year conference with his doctors. It’s been a very busy couple of months, filled with appointments, testing, consults, infusions, x-rays, and more. I’ll spare you the long detailed complicated chart notes and just give you the easy rundown. Theo’s one year conference was on Monday, December 18th. Here is the update.

Let’s start with Theo’s heart. On October 24th, Theo had an echocardiogram. Theo’s heart had suffered some damage from the chemotherapy he received during the first two years of treatment. Theo’s heart function improved after he started taking Lisinopril and Carvedilol, heart protecting medications that reduce blood pressure. Today, Theo’s heart is strong, and is functioning in normal range! He will most likely need to stay on blood pressure medication into adulthood, which, is not a big deal and we are completely fine with that. Theo’s next echocardiogram will not need to be for another six months.

Moving onto the lungs. Theo’s lungs have been followed very closely over the past year for any sign of damage and signs of GVHD. He has had several pulmonary function tests throughout the year to track his lung function. When Theo had adenovirus back in July, his ability to diffuse oxygen and carbon dioxide through his alveoli decreased. On November 20th, Theo had another pulmonary function test and the results were outstanding! Theo’s lung function has returned to normal range. Follow up with pulmonary doctors will not be for another four months.

Theo had his first eye exam with an ophthalmologist on December 6th. It was important to find out if there were any signs of GVHD in his eye. Fortunately, Theo’s eyes are clear of any signs of GVHD. However, we did find out that Theo is near sided and therefore needs glasses! Other than Theo’s past visits with his PCP for yearly checkups (up to four years old), Theo has never had a true eye exam. He just had to read a chart. Before leukemia, his eyesight was determined to be 20/20, excellent. The ophthalmologist recommended that Theo wear his glasses as often as possible with the hope that his eyes will get stronger. He also saw a little bit of scar tissue behind Theo’s right eye that most likely is from radiation. It will need to be closely monitored to make sure it doesn’t get bigger. Follow up with Ophthalmology will also be in four months.

The liver. Or as we like to call it, the drug lord mob boss. Given the season, maybe we should change the name to Scrooge!! Well, it looks like the three spirits visited Theo’s liver… because it is finally happy (or should we say jolly?)!! Theo’s ALT has dropped lower and lower ever since he stopped the steroids in October. With his liver being less inflamed, Theo’s cholesterol also returned to normal. See? When the liver is merry and jolly, everyone is happy! In order to make sure Theo’s liver would stay happy, the PICC Line stayed in, so he could continue receiving Micafungin, the IV anti-fungal medication. In the last post, I told you that the PICC line would not come out until the end of December. Guess what?? Christmas came early and the PICC line came out on November 27th!!! Theo was in clinic for his weekly blood draw and to receive a once-a-month dose of an IV antibiotic called Pentamidine. When the nurse went to flush Theo’s line, it was clogged. Blood would not come out and saline would not go in. At first, we were worried, what does this mean? Another procedure? Thankfully, no. Theo’s doctor made the call to just pull it out that day. She said that it had been in long enough and with Theo’s liver improving so well, she was not concerned. Turns out, PICC lines are not meant to be in that long anyways. The doctor was surprised it had lasted as long as it did. It was a long overdue good-bye and a wonderful day!! Theo celebrated by taking a luxurious one-hour bath (no aqua guard!!) with a bath bomb. He loved every minute. Although the ALT (marker of liver inflammation), has improved dramatically over the last couple of months, is not exactly where it needs to be. It has gone up a little some weeks, but mostly on the downward trend. At the most recent visit, Theo’s ALT was at 49. Normal range is in the upper 30s. SO close! As long as it continues to move in that direction, Theo will continue tapering off of Tacrolimus (immunosuppressant). He is due to be completely done with it on January 1st! Talk about a great start to the new year!!!

For a while, when Theo was on steroids, it seemed as though Theo was only growing in width, not height. As you know, the steroids made him gain a remarkable amount of weight in a very short period of time. So how has his treatment affected his growth? The radiation oncologist told us that the radiation Theo received would affect his overall height. How much? Probably not too much, maybe a few inches shorter than he would’ve been and we won’t have any clue until Theo’s much older. But what about steroids? As soon as Theo started taking steroids in July, his growth chart plateaued. He literally stopped growing during the four months he was taking them! His bone density also decreased significantly. The nutritionist told us that taking calcium would be very important for Theo’s bone density. Of course, she was right. The bone scan Theo had on December 12th, revealed that his bone density has improved dramatically! Theo is also gaining height again and his growth chart is on the rise.

In summary, Theo’s body is getting stronger every day. He is recovering beautifully, and his doctors are beyond pleased with his progress!! There are a couple of things we will be checking in the coming months. First, Theo will have his iron levels checked. Currently, his iron levels are high. Not as high as they were earlier this year, but high enough that it may require treatment. Having excess iron in the blood can be harmful to your organs, as it will attach to them and cause inflammation. It is common to see high iron levels after years of several blood transfusions, like Theo has had. If the iron levels do not drop down into normal range on their own, the treatment is to pull a large amount of blood out of the body so the excess iron that is attached to the organs can be used to make more blood. Crazy, right? Theo also has an appointment with the endocrine clinic in January to check his adrenal glands. I have mentioned before that long term use of steroids causes the adrenal glands to shut down. It takes a long time for them to wake up and be functional again. Theo is currently taking a physiologic dose of hydrocortisone until the adrenal glands are up and running again. Our visit with the endocrine doctor will also be a chance to discuss how Theo is doing in terms of his overall growth, hormones, and eventually, puberty.

Presently, Theo is feeling good, but his stamina is low. It will take a long time to build up his endurance. It doesn’t take a lot to wipe him out. A trip to the grocery store, a morning of appointments at the hospital, or a few laps around the block and he’s done. It’s the same with school. After 60-90 minutes of his school lessons he needs a break, or else my student falls asleep during class. He needs lots of breaks and daily naps. Lasting for two hours of trick-or-treating on Halloween night was a huge success for Theo. He had the best time trick-or-treating with his best friend. Then last week, we went to the Seahawks game. Theo was a special guest because he is one of Geno Smith’s 7 Sunday Heroes!! What an incredible experience. We were all blown away and not prepared for all the craziness and stimulation of being at the game. Do you know how big that stadium is?? It’s massive!! Theo did his very best to keep going even when he was exhausted. Walking from the car, through the stadium, up stairs, down stairs, then on the field, and finally back to the car. It must have been two miles of walking. His poor legs were throbbing that night. It was the most activity he’s done in a long time. But he did it and he will continue to prove to us that he will not slow down. He can do anything.

Ready for the finale? I saved the best for last. Theo’s Clonoseq (the test that takes the closest look at all of his cells in his bone marrow) came back negative for disease!! There were ZERO residual clonal cells identified, which confirms COMPLETE REMISSION!!! 100% of Theo’s marrow cells are donor cells!! This is incredible, beyond exciting, absolutely marvelous!! Everyone, please raise a glass, I’d like to make a toast. To Seattle Children’s Hospital, Fred Hutch, and all their brilliant hard-working doctors, nurses, staff, and volunteers. To cancer research and everyone who supports/donates to cancer research. To every blood donor and bone marrow donor… you have saved lives!! To all our loved ones, family and friends who have supported us and continue to cheer on Theo and shower him with love. To my husband, Luis, the most incredible husband, partner, and friend I could ever ask for. You have kept us going, working your butt off for us. There’s nothing you can’t do. We have been through so much, and you still make me laugh every day. I’d be lost without you. And of course, salud to Theo, our hero, our brave stoic warrior, my angel and light. He has worked so hard for so long, always positive, always reminding us to smile.

SO… what now? Theo only needs blood draws and provider visits every two weeks. That’s the plan for the next couple of months. Then eventually it will move to once a month for the rest of the year. After the second year he only needs to be seen and have blood drawn every three months. Then, after the third year, Theo gets transferred to the long-term survivorship team. Theo’s doctor said he will likely be ready for his first round of vaccinations this February! That means he should also be done with his other immunosuppressant, Ruxolitnib, by then as well. He is already done taking anti-fungal meds and antibiotics. Next to go will be the anti-viral and the liver support medication. The only medications he will be left with are calcium, vitamins, and blood pressure medication. No more pill box! No more medicine alarms! No more home care delivery supplies! No more specialty pharmacies!

For the first time in a long time, we can look beyond each day and think about the future. What will Theo be doing next month… or later this year?!? What does Theo want to be doing? He says he is most excited to go back to school and travel. Even if he can only go back part time in March/April to start, he’ll take it! He has been patiently waiting to return to the classroom, meet other kids and make new friends. Luis and I have been, too. Theo needs it! He is also looking forward to traveling to somewhere other than Children’s Hospital. I don’t blame him! He wants to take a road trip, get on a plane, go to the climbing gym, play on a beach, swim in a pool!!! The list is never ending. He has been fighting for so long, battling so hard, and has put up with so much… but has always remained positive. He will do it all, and more. We think he has earned it. Happy holidays to all!! May you be filled with peace and joy and your light shine brightly in the new year!

“There is nothing in this world so irresistibly contagious as laughter and good humor.” – Charles Dickens, A Christmas Carol