Big doors are opening…

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

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

This is the year of the Dragon. I do not know a lot about the Chinese New Year or this holiday that is based on Chinese mythology. But I couldn’t help but take a peek at what this new moon cycle has in store for us. Certainly, something good, as this holiday is filled with rich culture and tradition and centers around the hope for good fortune and prosperity. Luis and I are roosters, born in 1981, and from what I read, this year will be filled with good fortune for the rooster. Chinese metaphysics consultant, Vicki Iskandar says, “sacrifices made in 2023 are likely to pay off in the next two years” and the rooster, “can take a sigh of relief”. I am not one for big resolutions or believing in horoscopes, but this fortune is one I am committed to. A fortune I will keep in my heart and remind myself of every morning I wake up. Yes, it’s been a long four years. Yes, it’s winter. But I see nothing but sunshine and blue skies up ahead.

You’ve heard me say it before. The effects of cancer treatment are lifelong. There are and will continue to be more side effects and other issues related to Theo’s treatment throughout the remainder of his life. There is no “back to normal” like when a bone heals after it breaks. For Theo and other pediatric cancer patients, they must adjust to a new normal, a different body and certain limitations. In my post titled, “Recharge”, I described our first meeting with Theo’s transplant doctor as, “listening to the small print at the end of a drug commercial”. I can’t tell you half of the things she said that day because I was focusing so hard to not cry. How could we possibly think about two, three, or ten years from now? We had to think only of NOW. Our only concern was getting Theo through his transplant. Getting rid of the cancer… FOR GOOD. For so long we have only been able to plan for today. Every day our mantra was, “Get through today. One day at a time”. That’s the only thing that mattered. And Theo did it!!! His doctors did it! WE ALL did it!! So, now that Theo is on the other side, it’s time to look ahead at what’s next. Time to pay attention to the small print, because it’s real.

Perhaps I should have reread the blog post “Recharge” before our visit with the endocrinologist on January 8th, 2024. Perhaps it would have prepared me better, mentally, for the overload of information. Perhaps not. After Theo reached his first-year post-transplant, after learning that the Clonoseq was negative, and that Theo’s bone marrow cells are 100% donor cells, it felt like we were finally leaving the dark dungeon and getting out to see the light! Waking up to see Theo getting stronger every day, to laugh, and play with us… it is the best gift ever. His health and happiness feed our souls. We needed to enjoy this breath of fresh clean air, this vacation from hospital rooms and medical conversations. As much as we appreciate all of the doctors and staff at Children’s Hospital, it’s time we start seeing other people. Sorry Children’s, it’s not you, it’s me. Which is why I felt completely blind-sided during our appointment with the endocrinologist. Like finishing a marathon only to realize you signed up for a triathlon. Wait… there’s more?! To help you not get overwhelmed with information like I did, I will break down the appointment as simply as possible.

“Why are you here?” asked the endocrinologist after she walked into the exam room. “Ummm… we were referred to you by my son’s bone marrow transplant team”. Okay, so we weren’t off to a great start. Fortunately, I was prepared with a list of concerns and questions that I put together with Theo’s PA at his previous provider visit. I knew why we were there, but did she? *Always be prepared with questions. If you don’t ask, they won’t answer*. Plain and simple. The main concern was Theo’s growth and hormones and adrenal gland function. So, we started with his growth. After many delays, Theo is back on track. Yes, his growth paused for a considerable amount of time while on steroids, but now he’s back on the chart. Based on his current growth patterns along with mine and Luis’s height, Theo is predicted to be 5’7″. Say what now? We knew from radiation that his overall height would be shorter… maybe a couple of inches, but really? Luis and I come from tall families. It’s not like we expected Theo to be seven feet tall, but honestly, we were shocked by this height estimate. Steroids often make bone plates fuse together prematurely. Theo will need a bone age x-ray to determine if there is still space for growth. In three months, Theo’s growth will be checked again to see if he needs growth replacement hormone. The good news is that he’s on track right now.

Next, we talked about Theo’s adrenal glands. He is currently taking a physiologic dose of hydrocortisone, which will slowly be tapering off. “When?” I asked. “Whenever you want.” was the answer. UGHHH, what kind of answer is that? Turns out, it does matter when you taper off the hydrocortisone. I was then told that the taper takes about one month. During that time, Theo will feel tired, grouchy, and like BLEH most of the time. Then we wait one more month to test the adrenal glands. WOW! That does not sound like fun for Theo. We definitely do NOT want to do the taper as Theo is returning to in person school. Talk about setting him up for failure. We decided to wait to do the taper in the summer, when there is no school. There is a strong possibility, even after the taper, that Theo’s adrenal glands will still be “asleep”. We were told that many kids who have had a bone marrow transplant have to continue taking hydrocortisone for a couple of years. Why? You guessed it: steroids. Holy smokes!

Do you know many people that take thyroid medication? I’m guessing you do. Thyroid medication is very common for many people, including Theo! His thyroid hormones are at about 60% and are not expected to get any higher. Hypothyroidism is an awful condition that can easily go unnoticed at first. The thyroid gland regulates ALL health!! Such as the heart, hair, skin, gut, cell turnover and regeneration, etc. So, it’s no wonder people who have an underactive thyroid, experience things like tiredness, constipation, dry skin, fatigue, weight gain, thinning hair… the list goes on and on. There are many reasons why someone can have an underactive thyroid. For Theo, it’s pretty clear what caused his. Steroids and radiation. The pituitary, gland, located in the brain, is responsible for releasing thyroid stimulating hormone (TSH) which goes on to tell the thyroid to release its hormone. But Theo’s pituitary gland is failing to release TSH. Imagine that the pituitary gland is the parent, and the thyroid is the kid. The parent is always telling the kid to do their homework, which is to make hormones. In Theo’s case, the steroids were doing all the homework, so the parents stopped asking the kid to do it. Pituitary gland cells are also very fragile, and difficult to regenerate after radiation. Theo received three days of cranial radiation IN ADDITION TO four days of full body radiation. So, it’s safe to say his pituitary gland received some significant damage. At hearing the endocrinologist say this, I was devastated at first. The ground beneath me crumbled and I was suddenly falling without anything to hang onto. She must have noticed as I began digging my nails into my skin to stop the tears, because then she paused. “This is ok”, she said calmly. “All of this can be treated with hormones. Not drugs. We just need to replace Theo’s body with the hormones it cannot produce on its own”. Deep breath. This IS ok. Theo started taking Levothyroxine the next day. Like magic, his entire body perked up! It’s incredible, really. No more midday crashes and best of all – his stomach cramps disappeared!! What a fantastic change. Theo had been dealing with sudden and intense stomach cramps daily, ever since his transplant. It made sense at times. We attributed the cramping to medications, side effects of treatment, GVHD, and total lack of healthy gut bacteria from being on long-term broad-spectrum antibiotics for the past four years. But even after one-year post transplant, he was still having the stomach cramps. It didn’t make sense, until now. Finally… they are gone!

Our last conversation with the endocrinologist was to discuss puberty. When will it happen? Will it happen?? The average age for boys to enter puberty is age 11. For Theo, it could happen sooner, on-time, or not at all. No need to worry though. Like the doctor said, if it doesn’t happen naturally on its own, we treat it with hormone replacement. Considering the fragile state of Theo’s pituitary gland and amount of testicular radiation he received, we expect that Theo will need hormone replacement for puberty. But that will be checked once he gets closer to age 11. Until then, we’ll enjoy Theo’s non-stinky armpits and his room not smelling like a boy’s locker room.

Are you still with me? I know, it’s a lot. The appointment wasn’t at all what I expected, but the doctor warmed up to me and I think we understood each other better towards the end. We MUST understand each other and have a respectful relationship. After all, we will be seeing a lot of each other in the future. Needless to say, it was an eye-opener. We learned a lot about Theo’s hormones and the roll they play in regulating his body and growth. I also learned that it is not the end of the world if Theo cannot produce those hormones on his own. Hormone replacement is not like taking drugs. In two weeks, we will be meeting with nephrology to discuss Theo’s ongoing antihypertensive plan and review the ongoing plan for monitoring his kidney health. Oh boy, here we go again! Another overload of information? That is OK. It’s important to remind myself that appointments like these are designed to cover everything and anything possible related to Theo’s health. Full of high level information and general long term guidance for Theo. His body has been through SO MUCH. These specialists are here to make sure Theo has all the support his body needs. For that, we are forever grateful.

Now that we’re done with all that, let’s move on to something more fun. Like dropping medications and getting vaccinations! Yes. Theo finished his last pill of Tacrolimus on January 1st, 2024. Talk about a great start to the new year. Next to go is Ruxolitnib. He already started the taper on February 12th, 2024, and is scheduled to be finished in early April. On February 5th, Theo had his B-cell lymphocyte levels checked. In order for Theo to start his vaccinations, these cell numbers need to be at a certain level. Great news! The labs showed that his CD4 and CD19 cell counts are at the threshold where Theo can get vaccinations once he is midway into the Ruxolitnib taper. So, if everything still looks good on March 4th, the next provider visit, Theo will get his first vaccinations for his new immune system on March 10th!! Hooooooray!! Starting vaccinations should give Theo some immunity before traveling and going back to school in person this April. Starting vaccinations is HUGE!!! It means Theo can go to school, go to summer camps, travel, and go swimming: something Theo has been looking forward to for two years! And it’s just around the corner.

Before Theo’s last provider visit with his BMT doctor, I asked him if he had any questions. Yes. He asked, “Will my face go back to looking how it was before the transplant?” Theo had been looking at old photos of himself and took notice of how different he looks today. His look has changed several times during treatment. Chemotherapy, radiation, and steroids will do that to you. But the answer is YES. His doctor ensured him several times that his face will go back to how it was, with the exception of looking a little older. She was full of praise and positive news for Theo during the visit. His liver? Doing great. Blood counts? Lovely. Theo had an MRI a few weeks ago to check iron levels. It showed a light overload, therefore the treatment of a phlebotomy is not indicated. Wonderful! How about his skin? An old rash on his arm did have a bit of a flare up for a couple of weeks. It’s quite a mystery, really. It’s rare to see a rash like this, moving up his arm in a line. Not a concern though. We treated it with hydrocortisone, and it resolved quickly. Beautiful! Any signs of GVHD? ZERO. Theo’s doctor said all the things we wanted to hear and more. I could have listened to her all day. His next provider visit will be on March 4th. His first round of vaccinations are scheduled for March 11th. After that? We’re packing our bags… Make-A-Wish is sending us to Hawaii!!!

Theo now only needs to be seen by one of his providers once a month! However, he still needs blood draws every two weeks at the main lab at Children’s Hospital. Better than once a week! The fewer pokes, the better. The fewer appointments the better as well. For Theo, it means more time with Luis, aka Pops. Eating Papa’s food, drawing action figures together, going on adventures, and even styling their hair the same to look like twins (because they are). Luis and I are everything to Theo. We are his parents (of course), but also, his nurse, teacher, cook, and friend. It’s a lot to take on, overwhelming for sure, but it’s what Theo needs. We will do anything for him. We know Theo will be off on his own before we know it. Back at school, hanging out with friends, busy with sports practice. So, we’ll savor every moment while we can.

For Theo, fewer appointments at the hospital also means more time at home doing his latest and greatest activity: making jewelry. It all started with the mega fashion bead kit he gifted himself as a celebration for getting his PICC line out. He’s been hooked ever since. After making a bracelet for his online school teacher, she suggested that they start their own jewelry making club! They both realized that they share an equal excitement for it. Theo could hardly wait to get started. Now they meet every Wednesday to do some skill work and make pretty jewelry. Don’t be jealous, but Theo made me two beautiful pairs of earrings for Valentines Day. When Theo is not making sparkling accessories, he is drawing, painting, or coloring. It calms him, it relaxes him, it helps him focus. Honestly, he can paint for hours. It’s truly incredible. I know it’s ridiculous, but I want to save everything. Theo, on the other hand, has a much better idea. He wants to sell his paintings at a coffee shop or Sunday market, giving a percentage of his earnings to Seattle Children’s Hospital. Don’t worry, we will let you know when and where the sale begins!

Theo has overcome so many obstacles on this journey. His life for the past four years has been anything BUT normal. His childhood stories are very different from the ones other kids at school are sharing. Theo has stories about sleepy milk for back pokes, and the stress of steroids. There are no stories about soccer teams and spring vacations. We decided it would be beneficial for him to meet with a psychologist every couple of weeks to discuss his highs, lows, stress levels, and learning how to deal with difficult situations. We want him to have a trusting relationship with a professional, another adult other than me and Luis, that he can talk to if needed about anything. For a kid who has been through so much, we are amazed at how evolved he is and how well he handles himself. He has taught me more in the past four years than I could ever imagine. Theo is a busy bee. He’s on track with school, he’s practicing his piano, and he’s determined to be strong. Theo is back on the wall. The climbing wall that is. The day after his provider told him he was clear to go back to the climbing gym, we were there… for two hours. He also had a sleepover with his best friend!! I think Theo would rate that sleepover close to Christmas. It was so greatly anticipated, so well deserved. It was all Theo could talk about for months. Best friends for life.

Every day with Theo is a story, and stories bring light. Theo just finished reading the book, The Tale of Despereaux, by Kate, DiCamillo. What a tale it is! So beautifully written that you truly feel for the characters and their tragic lives. Although terribly sad and dark, there is light and hope deep within. The story illustrates that even those destined to great misery and believed to live a life of despair, have the ability to conquer all if they follow their heart. And even the blackest of hearts are capable of majestic love. Theo is like our Despereaux. He is noble like a king and brave like a knight. He brings light like the sun and is brilliant beyond his years. Theo is pure love.

“And hope is like love… a ridiculous, powerful, wonderful thing.” – Kate DiCamillo, from The Tale of Despereaux

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

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

It’s 3 o’ clock in the morning. I’m in a deep sleep, far away. Floating on another planet. Lost, relaxed. My body is heavy and still. Suddenly… something stirs. I hear soft footsteps close by. My mind slowly travels back to earth as I start to hear the familiar sound of the fan in the bedroom. Then I feel a gentle hand on the covers. It’s Theo. He has to go pee. Now that I’m awake, I might as well go, too. We walk to the bathroom. Did he just say something? Is he talking to me? I hear words, but they are not registering. My brain is still half asleep. Again, he’s talking. “Enchiladas. Squash and zucchini. Papa’s marinated chicken.” Food. Is he dreaming? No. He’s wide awake. The steroids make it hard for him to sleep. We finish up and wash our hands. As I tuck Theo back into bed, he looks at me with hungry eyes and says, “Tomorrow, let’s make banana bread.”

This is not our first battle with steroids. The first time Theo was on steroids was in January 2020. Just after his initial leukemia diagnosis. I titled one of my early blog entries, “28 Days Later”, explaining in detail the challenges and hardships steroids caused. Then, in July, during the delayed intensification phase of treatment, Theo was back on steroids for the second time. That blog entry was titled, “Food Fight”. Again, more examples of how awful and destructive steroids are to Theo’s body, mind, and daily life. Theo was back on steroids again earlier this year for four months following his transplant to treat GVHD. Finishing steroids for the third time felt like the end of a world war. Our enemy had finally surrendered, and we claimed victory. We could start cleaning up the mess and destruction and put our lives back in order. It was time for reconstruction, repair, and healing. Looking ahead to a brighter future while putting the pain behind us.

Then GVHD came back with a vengeance. In my last update, Theo was currently taking 30mg of prednisone (1 mg per kg of weight) per day. For the past six weeks (since I last wrote) his liver enzymes (ALT) have been going up and down like a yo-yo. Our weekly visits to Seattle Children’s Hospital turned into twice weekly to check labs and liver inflammation. We were not moving in the direction we wanted. On Thursday, July 20th, Theo’s ALT dropped slightly from the 600s into the 400s after the increase in prednisone to 30mg. With the improvement in inflammation, Theo’s doctor felt it would be safe to start an antifungal medication called, Posaconazole. It has a reputation for causing liver irritation, but with the increased steroid dose, there was a chance Theo’s liver could handle it. On Monday, July 24th, we went back to the clinic for a blood test. It wasn’t good. The ALT was back UP! Theo could not continue taking Posaconazole. The only anti-fungal medication that doesn’t irritate the liver is Micafungin, which is only available in IV form. The following Friday, July 28th, Theo had a peripherally inserted central catheter (PICC) line surgically placed in his right arm. And just like that, we were back to daily flushing of the line, daily infusions of Micafungin at home, no baths – only showers with aqua guard, and carrying medical supplies with us everywhere we go. Not again! I’ll be honest. I was completely agitated and fearful about what was happening but doing my best to not let it show. As usual, Theo kept a positive attitude. He kept reminding us over and over, “this is only temporary”. Surely the liver would recover soon… right?!

To our huge disappointment, the liver was not improving at all! On Monday, July 31st, Theo’s ALTs were back up to 583. Maybe due to steroid refractory GVHD? Theo’s doctor decided to double the steroid dose. That’s 60mg of prednisone a day. HOLY COW that’s a LOT of steroids. It was obvious how serious this was. I could see the concern on her face. Her voice was more pressing. The expression on my face as I listened to her talk must have revealed how worried I was. My nails dug into my thighs, and I was barely breathing. She immediately assured us that what was happening was still completely within their standard of practice. They have treated many kids like Theo with severe GVHD. Some who end up in the ICU with far worse and intense symptoms. Theo was nowhere near that, and she planned to keep it that way. This was going to be resolved. We needed to hear that and BREATHE. Theo’s providers had a plan. They always do. It was finally time for a liver biopsy. Every approach to reduce the liver inflammation had been exhausted and without success. Every card had been played. Time to fold and get out the big guns. We needed to find out if there was some other component contributing to liver inflammation other than GVHD. The liver biopsy was scheduled for the following Friday, August 4th, and fasting labs were done the next day, Tuesday, August 1st, to check cholesterol levels. No more messing around. It was time to go straight to the source to find out what was going on. Hopefully we’d get some answers.

The results from the fasting labs came back right away. We discussed the results with one of Theo’s providers. She told us that Theo’s cholesterol was very high. Not the bad cholesterol, but the good one, which is very unusual. Initially, there was concern for hepatic steatosis. That’s when there is excess build-up of fat in the liver, aka “fatty liver disease”. Was Theo’s liver storing fat? If it was, that is very concerning. I received the following message in MyChart from one of Theo’s providers, “Theo’s fasting cholesterol panel was quite high with a total cholesterol of greater than 300 and LDL cholesterol of 177, so there seems a good/reasonable chance that fatty liver is contributing to the inflammation”. The feeling of angst came flooding over my body again. Like a tide, it never stays low, always rising again. It wasn’t very clear what was causing the cholesterol to be so high. But clearly it needed to be treated regardless. His liver ultrasound did not show anything abnormal. His bilirubin levels were also normal. Hepatology thought it might be a lab error. We were so confused! I had so many questions that I knew had no answer… yet. What is causing the liver inflammation? Why is Theo’s cholesterol so high? Is he storing fat in his liver? Should we be making changes to Theo’s diet? Why am I so tense? There was this burning desire growing inside me to have answers. Like an itch that needed to be scratched. Patience. The answers will come.

Back so soon? The nurses at Interventional Radiology (surgical center at Children’s Hospital) were shocked to see us back just one week after the PICC line placement. On August 4th, the liver biopsy was done, and it was pretty straight forward. Although the procedure was quick, recovery takes much longer. Theo had to stay lying flat in bed for four hours post-op to not disrupt liver healing. After recovery, we went home and eagerly waited for the results… and waited… and waited. We were back the next Monday, August 7th, for another blood draw and provider visit. Still waiting for the biopsy results. Theo’s ALT had dropped, but very little. Not as much as we had hoped since the big increase in prednisone. Why was the liver still so inflamed?? There had to be something else going on. In the meantime, we learned of a new drug called Ruxolitnib. It was approved by the FDA to treat GVHD two years ago. Wait, has this been an option all this time? I thought steroids were the ONLY drug to treat GVHD!! Well, I’ve recently learned that steroids are always the first “go to” drug of choice for treating GVHD. Ruxolitnib has its own list of unwanted side effects as well. It lowers blood counts and puts patients at higher risk for viral and bacterial infections. But it could also be used as a steroid sparing agent. Since the steroids were not working to bring down the liver inflammation, we had to try something else. If it worked to treat the liver GVHD, we could get Theo off the steroids sooner. YES PLEASE.

I finally heard form one of Theo’s providers on Thursday, August 10th about the liver biopsy. Where do I begin? I’ll try to explain this as simply as possible. There was evidence that Theo’s ALTs may be elevated from a combination of two things. First, the biopsy did show changes to the liver that are consistent with GVHD. Ok, that’s good. Just as the doctors suspected. Second, they also saw changes to the liver cells that suggest possible steroid induced effects on the liver. Ah HA!! The steroids are contributing to the liver inflammation! And what about the cholesterol? A message I received from one of the providers states, “On review with hepatology, they do not believe that Theo’s high cholesterol is due to liver dysfunction, however, it very well could be due to the medication effects of the steroids.” Jiminy Cricket. It was those dang steroids all along. The good news is that it doesn’t appear that any issue was arising from Theo’s liver itself. In other words, Theo’s liver function is healthy and normal. ALL GOOD NEWS. So, we are to continue treating the liver GVHD with the steroid sparing agent, Ruxolitnib, as recently planned. And that’s’ exactly what we’ve been doing, since August 15th, when it arrived from the specialty pharmacy. Guess what? IT WORKS!!! Finally, after months of twice weekly labs and a biopsy, and worry beyond belief, Theo’s liver is NOT inflamed anymore. On Monday, August 28th, Theo’s ALT was down below 100, in normal range. Hallelujah. I think I can relax a little now and enjoy the low tide.

To say that we were disappointed when Theo had to go back on steroids is an incredible understatement. It was devastating, crushing, and absolute heartbreak. It’s different this time around. Very different. When Theo was on steroids before, it was during times when he was at risk of being underweight because of chemotherapy. It was almost a relief to see him eat so much because that meant he didn’t need a feeding tube for nutrition. He also had sufficient time for his body to recover between steroid dosing. Not this time. Theo started this round of steroids at a huge disadvantage. He is swimming against the current. His body has barely had enough time to recover since ending steroids in May. So now, instead of starting from a position of health and strength, he is starting from a position of weakness. Everything, from his weight, fluid balance, bones, muscles, and organs, LIVER, have suffered from the long-term steroid use over the years and are therefore compromised and the damage will be greater this time around. Therefore, we have to be extra careful monitoring his organs and managing his diet. We know Theo will gain weight. It’s inevitable! But if he gains too much, too fast, it can cause more problems. After we found out about Theo’s high cholesterol, we started making more strict changes to Theo’s diet. No chips, no red meat, no fried food. No buttery green beans. At first, it felt like taking a pacifier away from a baby. Steroids make him crave salty fatty foods! Theo wants to make healthy choices, but he is not always the one in control. He has been in so much distress over food. Theo is a FOOD LOVER. The problem is not trying to get him to eat healthy food. It’s helping him not eat TOO much food all day long. He eats plates upon plates of vegetables, green smoothies, fresh beet, celery and carrot juice, fish, salmon, squid, sardines, artichoke with olive oil… you name it! His new favorite? Chicken hearts. Healthy protein without the fat. He loves all the organ meat just like his Papa. But his brain is locked. He is completely obsessed with what he is going to eat and when he is going to eat it. We cannot go into the grocery store, or talk about food, or walk by a restaurant, without him breaking down because he wants to eat EVERYTHING!!! We cannot eat food in front of him without him drooling like a starved street dog begging for a bite.

Food, once a topic of joy and love, has turned into stress and frustration. For all of us. After spending all morning cooking then cleaning, then cooking some more and cleaning, and cooking again, Luis was ready to take a break from the kitchen. Theo on the other hand, was still hungry and wanted something else to eat. Luis loves making food for Theo. It was Papa and Theo Day. He was not planning to spend his entire day cooking for Theo but that’s what it had turned into. Although tired of cooking and cleaning, he started listing options and ideas for food he could make. Delicious healthy snacks he knew Theo would enjoy. But Theo could not decide. He didn’t know what he wanted, and it made him beyond frustrated. Theo NEVER raises his voice at Luis. He wouldn’t dare. And that’s just not who Theo is. He does not yell. But in that moment, Theo was fuming. He marched into the kitchen, red in the face, fists clenched tightly, and exploded in anger, “Too many steroids! Too many foods! Too many things in my head!!” The anxiety has become overwhelming for Theo. He understands that the steroids are to blame. That this is only temporary. He is trying SO HARD to not let the steroids take over… but he shouldn’t have to. He shouldn’t have this weight on his shoulders. To deal with this right now, or ever.

So, what do we do? We take it one meal, one moment, one bite at a time. We go outside for a break. Smell the fresh air, listen to the birds, or take a nature walk. There’s always something new to discover and enjoy outside. We talk about our struggles and frustrations openly. We listen. We remind each other to breathe. We do our BEST. And lastly, we remind ourselves that this is temporary!! This is not normal. We will get through this like so many other hard things we’ve been through. And when Theo needs another distraction? Reading and Art. The perfect distraction for him. If Theo is not eating, he is reading or drawing or painting. He reads books like he eats popcorn: daily and fast. He can sit for hours working on a project and not think or talk about food. Theo puts on his headphones, turns up the music, and starts creating. He is in the zone. Ideas flowing, music jamming, and then he is the one floating on another planet, lost and relaxed. No stress, no cravings, no breakdowns. Just a boy in his own world.

“

“I think I may paint a family portrait today… that is, if I have enough paint left for all the smiles.” – Paddington Bear

“De el plato a la boca se cae la sopa”

Luis never fails to have a saying to go along with something happening in the world. I have lost count of how many times I have heard him say, “Like we say in Mexico…” He has the ability to sum up the absurdity and complexity of something to then somehow make sense of it all in one simple phrase. He uses metaphors like it’s an art form. Placing them cleverly and casually in his language every day. So, it did not surprise me at all to hear him say the above phrase recently. It translates: from the plate to the mouth the soup falls. In other words, you can plan all you want, but life happens, and plans fall apart. You spend all this time preparing that soup. So much care and planning and just when you are about to taste it… it spills!

Why did Luis say that? One answer: Graft Vs Host Disease, aka GVHD. It’s back and it’s angry and ugly. Theo’s new immune cells are attacking his body again. Just FOUR days away from finishing his immunosuppressant (Tacrolimus). FOUR days away from being able to swim. Days away from adventures, travel, and time with friends. Luis and I had already started planning weekends, get togethers, and some summer fun, knowing Theo would have a stronger immune system. Luis and I even got excited at the thought of the two of us going on a date… finally!! One thing we were extremely optimistic about was the increasing chance of Theo being ready to return to in person school starting in the fall. As long as Theo is off his immunosuppressants he is cleared to go back to school. Just weeks ago, we were planning for vaccinations with his doctor. So yeah, you could say the soup spilled just before we were about to taste it.

Now, Theo will have to go back to the full dose of steroids (Prednisone) AND Tacrolimus and start the process of tapering them down all over again. Why? First, steroids stop Theo’s cells from attacking him. GVHD is like an engine revved up, driving a car towards the edge of a cliff. Steroids are the breaks. Tacrolimus is so that when we are ready to take the foot off the break, the car doesn’t take off at full speed again. Tacrolimus ensures that when the steroids start to taper down, the immune cells do not wake up too quickly or with too much force. Theo’s immune cells need a gentle steady start. They will eventually recognize Theo’s body and stop attacking it… eventually. The doctors say it can take up to one full year. Until then, it’s back to steroids, the frenemy. They’re great, because they treat GVHD. In fact, steroids are the ONLY thing that treat GVHD. But there’s also a downside. I think we all know why steroids are horrible. Weight gain, weakening muscles, water retention, calcium malabsorption in the bones, mood swings, adrenal gland shut down and more. But it’s what we have and what Theo needs. GVHD, I’m told, is the “bread and butter” of bone marrow transplant recovery. Meaning, all the medications and treatment revolve around the presence or absence of GVHD. When you have it, you get ALL the medications for immune support: anti-viral, anti-fungal, antacid, topical steroid ointment and creams, extra calcium, extra vitamins, etc. When you don’t have GVHD, it’s tapering off those meds and then just recovery! It’s all related and dependent on GVHD. Obviously, every patient is different. Different bodies, donors, type of transplant and all. Some patients may get only one mild case of GVHD and nothing more. Others may get it several times at different intensities throughout recovery. Theo’s doctor said, “We expect patients to get GVHD. If they don’t, it’s a pleasant surprise”. So, this is normal, it is expected, and most importantly… the doctors know what to do.

Before I go any further and tell you how it all happened, let me make one thig clear. No one knows how or when it started. GVHD is not at all obvious or easy to identify. It can be very tricky and take weeks or months to reveal itself. There is no swab, blood test, or scan that can find it. Biopsies can be done but are invasive and therefore not recommended unless absolutely necessary. It takes a very experienced BMT doctor to look closely at skin changes, to track the blood trends, and the symptoms and changes of the patient to determine if what is going on is truly GVHD. So there really is no “beginning” to this. Just the beginning of unusual things happening. Are these symptoms or events related? Is there cause and effect? Maybe. But we’ll never know.

Now, let me take you back about one month ago when those “unusual things” started to happen. The week of June 11th (one week before his birthday) Theo started feeling itchy on his arms and face. He developed a couple of hives on his cheek and arm that quickly went away with some topical hydrocortisone ointment. On Monday, June 12th, after taking a warm bath, his skin became red, inflamed and itched all over. He was in tears because he said it felt like his skin burned everywhere. Extremely unusual. On Sunday, June 18th (Father’s Day), we took a morning walk along the beach. The tide was waaaaaaaay out which made it fun to search for sea creatures and star fish. When we got home we all washed the sand and salt water off our feet (Theo was wearing crocs). Theo’s feet immediately started burning. They were red and itchy with white bumps covering the bottom of his toes and feet. We treated his feet with hydrocortisone and sent pictures to his team. Throughout the week, Theo began coughing more often. It originally started off as clearing his throat in the morning and getting out junk that had been determined to be the result of seasonal allergies and post nasal drip. His temperatures, normally around 97.8 degrees Fahrenheit, were reading closer to 99.0, almost in the yellow zone! Something was definitely going on. On June 21st, Theo tested positive for adenovirus. But could that explain everything? The burning feet and rashes? Maybe. His doctor also detected a spotted rash on the hard palate of his mouth. More alarming, however, was the condition of his liver. ALTs are enzymes made by the liver to help it break down proteins. The ALT level is checked with every blood draw. Theo’s ALTs were very high, in the mid 200s, a sign of inflammation. In Theo’s after visit summary notes, his doctor wrote, “we suspect this could be viral but as always, this could be GVHD. To find out, more testing needs to be done.” The next day Theo had a liver ultrasound to check liver function. He also had a chest xray and more blood drawn to check for other viruses. The liver, although inflamed, showed good function from the ultrasound. The chest xray revealed an upper respiratory infection. Nothing else. Theo’s rashes were not looking like “true” GVHD rashes. We hoped that the virus and his symptoms would clear up quickly and that would be the end of it.

By June 26th the rashes were getting worse and his cheeks were tomato red! He needed Benadryl at night because his feet were itching and burning so badly. We were instructed to continue with topical steroid ointment (Triamcinalone or Lidex – a stonger steroid – for the body, hydrocortisone for the face) twice a day and hopefully they would resolve once the virus ran its course. Could this be GVHD? Again, we discussed that possibility with Theo’s team. If it was, we were told it would eventually reveal itself. Unfortunately, without any obvious proof at that point of it being GVHD, the best thing to do was continue as if it was viral and continue applying topical steroids. We were now going on weeks of twice a day ointment. Guess what? We are STILL applying ointment today! You might recall that Theo despises having ointment put on his skin. He loathes it!! Initially it was a struggle. As soon as he heard me say the word, “triamcinalone” he became agitated and in complete dismay. It was the very rare time in his life that I ever saw him this way. He is allowed to be upset, of course! He is allowed to get frustrated and angry. He has more than enough good reasons to be. It’s good for him to be able to release those feelings. And he did. He would huff and grunt, and sometimes cry. And then… he’d be over it and apologize. Now, it doesn’t bother him at all. He got it off his chest and moved on. Wise beyond his years.

The symptoms were not getting better at all… in fact, they were getting much worse! He was red all over. Theo woke up coughing so hard and so long, he often did not have energy to get out of bed until the afternoon. Most mornings he coughed to the point of throwing up. Gagging on sticky mucus that was caught his throat. The first week of July was the worst. Extremely low energy, non-stop coughing, no appetite, labored breathing, and high temperatures into the yellow zone. On the morning of July 5th, we noticed that Theo was having more severe labored breathing. Instead of his chest rising up and down, his sternum was retracting, and his belly was pushing out. He complained of being short of breath and unable to take a full breath in. He described it by saying, “You know how when you yawn, you have to take a deep breath? Well, I cannot do that.” His breathing was very shallow and quick. We rushed to the clinic that afternoon so someone on his team could take a closer look. A new chest xray did not show anything more than the already detected upper respiratory infection. But his oxygen saturation was low at 94%. Anything lower than that and Theo would have to be admitted to the hospital to receive oxygen support. Thankfully, he was ok to go home… my parent’s home that is. His doctors wanted Theo to stay close to the hospital, in Seattle, in case anything changed or got worse. He started using a steroid inhaler twice a day. I was also instructed to give Theo stress doses of hydrocortisone for the next three days. Boy did that do the trick! Like magic, Theo woke up the next day with energy! For the first time in over a week he woke up and did NOT throw up from a violent coughing fit. He hopped out of bed and with bright smiling eyes said, “I’m hungry. What’s for breakfast?” Our boy was back! Just in time to perform in the piano recital that following weekend.

At Theo’s next clinic visit with his BMT doctor, GVHD was no longer in question. It had declared itself. She first looked all over his body. It was clear that the steroid ointments were not enough. Theo’s rash had progressed to the palms of his hands. But it wasn’t until she looked inside Theo’s mouth that she declared it to be GVHD. The rashes on his body, she said were “atypical” but the rash in his mouth was very on point with being GVHD. Theo’s doctor wrote, “the constellation of findings is consistent with chronic GVHD. His eosinophils are mildly elevated which also suggest GVHD”. If left untreated, chronic GVHD can lead to autoimmune disorders and more problems later in life. Even more concerning was Theo’s liver inflammation. Theo’s doctor referred to it as “impressive acute transiminitis”. Meaning, his ALT had quickly gone way up into the 400s!! Just a couple weeks prior it was in the 200s. Normal range is below 100. On that Monday, July 10th, Theo started taking steroids. She decided to start with a lower dose (half) and see if that would be enough to stop GVHD and reduce the liver inflammation. Theo’s Tacrolimus dose also went back up to 1ml twice daily. The news was crushing. Steroids… again!? Okay, at least it was a low dose. Maybe it wouldn’t be that bad. We went back to clinic a few days later on July 14th to check Theo’s progress. The rash had started to show improvement, but Theo’s mouth had developed more hyperkeratotic features at the corners of his lips. Not a good sign. His ALT had barely budged. We left the clinic with our fingers crossed that on the following Monday there would be some significant improvement.

On July 17th, Theo and I walked into the clinic feeling hopeful and ready to hear some good news. I was certain that the recent start of steroids had done the trick and was excited to discuss when we would start tapering him off. Then, two physician assistants, a nurse practitioner, and Theo’s doctor walked into our room. Uh oh, this can’t be good. Why are there so many providers from Theo’s team in the room with us? Usually, it’s just us and the PA or the PA and doctor. I was not prepared to hear the update they were about to give us. Theo’s ALTs were in the high 600s!!!! What?!?! But how? NO ONE was expecting this. Theo’s treatment plan was severely altered. His steroid dose was increased to 30mg a day (one mg per kg of weight, aka FULL DOSE). An antacid was added to help prevent GERD caused by steroids. His tacrolimus dose was also increased. A topical liquid steroid called Beclomethasone was added, to be taken four times a day. A higher dose of steroids and immune suppression also means that Theo needs to be back on an anti-fungal medication. You see? Having GVHD means that ALL the other medications come with it. It felt like we were moving backwards. Are we back where we were six months ago? Do we have to do this all over again? It felt like I had just been mugged in broad daylight! If Theo’s liver did not improve after the increase in steroid dose, it would need a biopsy. Theo was also at risk of needing a PICC line placement. Basically, a permanent IV line placed in his arm to administer IV medications at home. My eyes started swelling up as I listened to the plan and possible outcomes. It was hard to focus and not think about how all OUR family plans were being shattered and Theo’s body would become so fragile again. After making so much progress and looking forward to doing so many things. Theo’s immune system will be severely compromised again. We will need to go back to strict precautions and always be within 30 minutes of an ER. The only thing that kept me strong in that room was Theo sitting on my lap, my arms wrapped around him tightly. His sweet soul reminding me to stay positive and that everything will be ok.

By Thursday, July 20th, the ALT had dropped back down into the 400s. OH PHEW!! What a relief. Theo has been referred to see the hepatologist (liver specialist) in the meantime to have a closer look. For now, he will continue with the 30mg dose of steroids along with the other meds until further notice. Presently, Theo is feeling good. He has lots of that strong steroid energy. His cough is almost gone. The rashes on his body are not as red, more like hyperpigmentation of his skin. Much better. His appetite? You guessed it. Here we go again with the steroid hunger. It always takes over and that makes things extra tough. Combatting the negative effects of the steroids will be even harder this time around. Theo only had about two months of being off steroids to get his weight back down (mostly from water retention) and strength back up. He never got a chance to fully recover and now he’s back on them. Keeping muscle mass and not gaining a lot of weight is very important for his long-term health, but it’s very challenging!! Luis and I have had several conversations with Theo about making healthy food choices even when the steroids don’t want him to. To try to ignore those greasy salty fatty cravings as much as possible. Theo knows it won’t be easy, but he is motivated! He is determined! He is our inspiration!! He has already put together a plan for staying strong and healthy while on steroids. He has a list of healthy foods that he loves and can eat in large portions whenever he wants, like zucchini, fish, quinoa, beans, broccoli, and soups. He even created The Family Strength Challenge: every day we do 20 squats, 20 stand ups (from a stepping stool) with hands tied behind our back, high knees for one minute, mountain climbers for one minute, and plank for one minute. Truly, no one has a better attitude about all of this than Theo. NO ONE. I thought he was going to be crushed after finding out he could not go swimming. Boy was I wrong. He simply shrugged and said, “That’s ok. I’ll just have to wait a little longer.” Luis and I are always so impressed with how hard he works and how positive he is. We both know that feeling down and focusing on the negative will only make things worse… so we decided to follow Theo’s lead. Don’t worry, be happy. Thank you, Theo.

“If you’re in a happy mood, you will pass it on to others.” -Theo Avila

Want to know how you can help millions of kids like Theo? Make a donation to cancer research! Help cure cancer faster by raising funds for Fred Hutchinson Cancer Center. The Fred Hutch Obliteride is happening August 12th and our dear and wonderful friend, Sue, is riding to raise money! We met Sue about two years ago. She is one of Theo’s Make-A-Wish volunteers. Sue instantly became a close friend, like family, and continues to shower Theo with her love, support, and Spider-man gifts. Not only that. Sue supports many kids and is determined to win the fight against cancer. This will be Sue’s 5th Obliteride. Being close to Theo and knowing his battle, Sue wanted her fund-raising money to go directly towards research that Theo could benefit from. This year she has chosen Dr. Paul A Carpenter, MD, MBBS, attending physician of the Pediatric Blood and Marrow Transplant and Cancer and Blood Disorder Center at Seattle Children’s Hospital as the recipient for all the funds she raises. She recently met with Dr. Paul A Carpenter and got to hear about some of the amazing research he is working on. His clinical and research focus is on graft vs host disease. (YES!) His research continues to explore new therapies for the treatment of acute and chronic GVHD. He has also designed studies to evaluate the efficacy of post-transplant therapies for high-risk Philadelphia chromosome positive leukemia (that’s Theo!). Dr Carpenter is researching therapies that directly affect Theo!! Therapies that Theo could benefit from. YOU CAN HELP!! Please make a donation to Sue’s fundraising page: https://tinyurl.com/2p9yf2pb. Your support WILL make a big difference. Thank you, Sue. Thank you to all who donate.

“Lookout kid, trust your body. You can dance, and you can shake. Things will break, you make mistakes. You lose your friends, again and again. ‘Cause nothing is ever perfect. No one’s ever perfect. Let me say it again, no one’s perfect. A lifetime of skinned knees. And heartbreak comes so easy. But a life without pain would be boring. And if you feel it, it’s fine. I give you everything that’s mine. I give you my heart and my precious time.” Arcade Fire – Unconditional I (Lookout kid)

This song. Every time I hear this song, I am fighting back tears. Tears of pain and joy. Tears of hope and love. When I hear this song, I think of Theo. His still very young life and all the horrible things he has endured. I think of his innocence and fragility and the challenges that await him. I think of his vibrant sweet soul and all the wonders and beauty it will hold. I think of his first day back at school, his first dance, his first love, his fears, his discoveries… his future. Theo has not had an easy start to his life. He has been forced to deal with so much, so young. He has experienced hardship and pain on a level no child should ever know. I desire, with all my heart, for Theo to be happy. To explore and break barriers. To take risks and create. To live and love with passion. To go full speed ahead and not let anyone or anything slow him down. Cancer will not be his crutch. It will only fuel his fire. Theo did not choose this, and nothing can change what has happened, but it has changed him. He has found light in the darkest places. He has flourished through the fight. Thriving where there is only decay. He has discovered his own special power. That is why I know… Theo will spread his wings and soar.

Recovery continues. On Monday, April 24th, (DAY 133) Theo began taking 20mg daily of Disatinib. This is two thirds the dose that he was taking prior, that was making him sick and giving him abdominal cramps. Fingers crossed Theo would tolerate Disatinib at a lower dose. Did it work? Definitely NOT. Theo immediately started having stomach pain, headaches, heavy eyes, and very little energy. He had lost all desire for physical activity and most days had zero appetite. His doctors encouraged us to have Theo continue taking it for a few days to see if his body would adjust. Theo put up with the symptoms for a total of six days. He was grabbing puke bags in the morning, having several bathroom emergencies throughout the day, and was unable to enjoy the one thing he loves the most: food. By Sunday, April 30th, he had had enough. We stopped the Disatinib for good. As soon as we stopped it, Theo felt better. All of the symptoms he was having disappeared and he came back to life. It was obvious that Theo’s body would not tolerate Disatinib, no matter the dose. Theo’s body is completely compromised on Disatinib. He is not himself at all. To us, that is not recovery. It was back to the drawing board to figure out our next plan of action.

Theo was back to feeling like himself again. He had good energy and a big appetite. Perhaps a little too big. You should all know, very well by now, that Theo loves clams. So much so, that on the night of Saturday May 6th, Theo ate three pounds of clams (almost all on his own) for dinner. Food is a celebration, something to get excited about. And boy was Theo excited. He had been looking forward to those clams all week and was ready to savor every bite. Unfortunately, it didn’t end well. It was a spectacular dinner with a very sour ending. Were the clams too rich? Too much for his one-week-post Disatinib stomach to handle? I think so. By 9:30 pm Theo was complaining of being too full to finish his pills. Within minutes he threw up his entire dinner of clams. We thought that was the worst of it, that he was done and feeling relief. Nope! He could not stop throwing up. That’s when I started to panic. But first, let me explain a few things.

On Wednesday, May 3rd, Theo took his last dose of steroids (prednisone). We were thrilled! Finally. It had been four long months. His cheeks were more swollen than a puffer fish and his leg and core muscles were getting weaker by the second. His adrenal glands were probably fast asleep since steroids had been in control for so long. The adrenal glands are responsible for making the hormone, cortisol. Cortisol is needed every day for many body functions like maintaining the energy supply for the body, fluid and electrolyte balance, and maintaining blood sugar levels. Cortisol is also very important in controlling the body’s reaction to stress. Since Theo’s adrenal glands had been inactive for so long, he had to start taking hydrocortisone. It is the medicine most often used to replace cortisol in the body. It takes time for the adrenal glands to start making cortisol on their own after being out of commission for so long. Theo will have to take hydrocortisone for at least one month, maybe longer, to help wake them up. If Theo becomes ill, injured, or has a “stressful change” in his body, then he will need “stress dosing”, which is 10mg of hydrocortisone every eight hours and continued for 24 hours after the stress has resolved. But wait… that’s not it! IF Theo is unable to take a stress dose (because he has repeated vomiting after eating clams!!) then he will need Solu-Cortef (hydrocortisone) by injection. It is very serious. Immediately following the injection, you have to call 911 and be taken to the emergency room. I know, it sounds scary. I was trained at clinic how to prepare the medicine in the syringe and inject it into Theo’s leg, like an EpiPen. I was told that the injection is very rarely used, and they doubt I would ever need it. Well, on the night of May 6th, I was extremely worried that we would be one of those “rare” cases. That I would have to give Theo the injection! Oh heck NO. We needed to do whatever necessary to avoid that.

Now, back to the part when I was panicking. While Luis held the puke bag and comforted Theo, I called the on call BMT doctor. At first, she recommended we wait for him to stop vomiting and then give the stress dose. Ok… but what if he can’t stop?! It was almost 11pm. The last ferry leaving Kingston was at 11:10pm. Theo had been throwing up for 45 minutes and it didn’t look like he was about to stop anytime soon. If we were going to Children’s Hospital, then we needed to get on that ferry! Like I said, we did not want to risk having to give the hydrocortisone injection. We did not want to end up going to the emergency room in Silverdale. No way were we going to let that happen. Then Luis saw blood in Theo’s vomit. That did it. We knew we needed to leave. We packed a bag and raced out the door, barely making the last ferry. Theo was in and out of sleep or focusing on taking deep breaths most of the ferry ride. As soon as we were within a mile of the hospital, Theo said, “I feel much better now”. Oh thank goodness!! But really?? Looks like we could have stayed home after all. Well, it was too late now to turn around. We told the on-call BMT doctor that we were coming and they were expecting Theo in the ED. Here we go. A visit to the ED is always at least five hours if not more. We knew it was going to be a long night. It took almost two hours for the nurses to find a vein and start an IV. TWO HOURS!! They finally got it by using an ultrasound. Theo’s veins are so tiny and difficult to find even on a good day. That night they were tiny AND flat because he was so dehydrated from throwing up. I have so much appreciation for the nurses at Children’s Hospital. Working under so much pressure, sweating as they make the seemingly impossible, somehow possible. It can’t be easy, but they always find a way.

After Theo got some IV fluids the doctors said we could leave. That’s it! Six hours and a sunrise later, we were out of there. Theo’s blood looked good, no sign of infection or anything else unusual. By 6am we were leaving the ED, on our way back home, eager to get whatever little sleep we could catch. The next day, Theo announced he is on a break from eating clams until further notice. I don’t blame him. It happens. The “eyes are bigger than your stomach” scenario. Only Theo doesn’t have a normal functioning healthy digestive system. His had been recently poisoned with Disatinib while still recovering from a toxic overload of radiation and chemotherapy. Add months of multiple, heavy, and continuous antibiotics on top of that and you’re left with ZERO good bacteria. His microbiome is completely wacko, as in NOT GOOD. Hmm, no wonder he got so sick! Lesson learned. From now on we have to take it easy. It’s so wonderful that Theo’s an adventurous eater, but for now, we need to be patient.

For the next three weeks, Theo was chemo free! His stool returned to normal and his energy was bright. Theo’s daily routine of meds and ointments felt easy again. We all felt so much better, but we knew it might not last. Theo’s doctors were discussing the next step in his treatment. The Disatinib did not work. What about Imatinib? They recommended we try Imatinib starting at a low dose for the first month, then increasing to the full dose if Theo is tolerating it well. My gut reaction was to say NO. My heart is tired from seeing Theo getting beat down. But I am not a doctor. I have not done any research on how to cure cancer or how to keep pediatric BMT patients in remission. We trust Theo’s team and the treatment they recommend. They also want the best for Theo. So, Theo started 200mg a day of Imatinib on Monday, May 22nd. Oh please please please work this time!

At first, it wasn’t that bad. It started with early morning abdominal pain that went away after going poop or letting out some gas. Theo said he was okay with that, as long as either mama or papa was around to give him snuggles while he was cramping. As the week continued, the symptoms worsened. The tummy cramps became more frequent, and his stomach became more sensitive. By the second week, Theo was having up to six stools a day with cramping, feeling “icky”, barely eating, and having a hard time finishing his pills because he felt so full. The icing on the cake was on Thursday, June 1st. Theo had leaky diarrhea in bed while napping. He had increased stomach pain throughout the day and several emergency trips to the bathroom. He was so uncomfortable; he couldn’t take it anymore. That day, we called the clinic to tell his doctors that we’d be stopping the Imatinib for good.

Abdominal pain is a beast nobody likes dealing with because there is not always one obvious culprit. Rather, it’s a combination of many things. If Theo’s doctors need to change something, like his medication or a dose, they try to change just ONE thing at a time. That way, they know if that change has any adverse effect. Following the true scientific method. Change only one variable at a time. Unfortunately, it’s not always that easy when it comes to Theo’s treatment. At the same time Theo started taking Imatinib, his Tacrolimus (immunosuppressant drug) also tapered down quite significantly. It has to be taken into consideration if the lower dose of Tacrolimus contributed to Theo’s abdominal pain and symptoms. Maybe? But unlikely. Theo also developed a rash on his legs. Fortunately, it cleared up in just two days after applying steroid ointment. No sweat! If only all problems could have an easy solution like that one. Rashes are bound to happen and will likely continue throughout recovery. Theo’s skin is so dry and sensitive from the intense chemotherapy and radiation. It will take a long time for his skin to completely heal. He needs to be extremely careful in the sun, either covering his skin completely or doing multiple applications of sunscreen head to toe if his skin is exposed. He has severe red dry patches all around his neck and scalp. Hydrocortisone ointment is applied twice a day to the affected areas of his skin and a topical steroid liquid is applied to his scalp twice a day. Of all the hardships Theo has been through, all the crap he has to put up with… this is what he dislikes the most. He loathes it. The feeling of greasy, sticky, oily, ointment on his neck and scalp brings him near to tears every time I apply it. Thank goodness his skin usually responds quickly to topical steroids. Hopefully he will not need it much longer.

I’m so proud of Theo for trying so hard. For putting up with these horrible symptoms for as long as he has. He doesn’t give up. Even while curled up in a ball of pain he says, “I can do this.” When Theo was taking martial arts last year, his teacher, Sifu Rick, spoke to the kids about self-discipline. He gave each kid a card that encourages them to make positive choices and avoid negative ones. To do things that are good for yourself, whether you feel like it or not. That card is hanging up on our refrigerator and every time I see it, I think of how strong Theo is. He knows that the chemotherapy is part of his treatment plan. So even though it makes him feel bad, he tries his hardest to do it anyways. Unfortunately, Theo’s body cannot tolerate Disatinib or Imatinib. Presently, Theo’s doctors are discussing the next step. Is there another chemotherapy option we can try? If Theo cannot tolerate the full does, is there any benefit to giving him the lower dose or is it just causing more damage to his body? Do we just accept that chemotherapy doesn’t work and instead keep a closer watch on his bone marrow to look for early markers of leukemia? We shall see. In the meantime, Theo is going to enjoy NOT taking chemotherapy and have some fun in the sun! While protecting his skin, of course.

Presently, Theo is feeling good. Aside from some lingering tummy cramps in the morning, his energy is on the rise. There’s been a lot of ups and downs while figuring out his chemo plan, which led to many setbacks in his energy and strength. The good news though, is that Theo is moving in the right direction! He is recovering, he is thriving!! By the end of June, he will be done taking his immunosuppressant, Tacrolimus. Do you know what that means?? Theo is cleared to go swimming!! Theo has been waiting ever so patiently to get back in the pool. We are also counting down the days to his birthday, June 17th! It’s going to a be a celebration of the century. Making up for years of missed celebrations. EIGHT YEARS OLD. In my heart and mind though, I still see Theo as my little baby, and he forever will be. Lately, Theo has been asking for more “Papa and Theo days” so he can spend time alone with Luis. Theo has missed being with Luis so much this past year while being at the hospital and living in Seattle. Now they can finally make up for lost time. I love having some time to myself, but I’ll admit, I also get a little jealous. I see how much fun they’re having. The volume and excitement of Theo’s voice goes up to a whole new level. Theo learns something “so cool” or does something so out of this world amazing, like he has entered a different dimension with Luis. I just want to join in! Wait, can I have a “Papa and Mama day”? Luis started taking Theo fishing at the marina dock in Kingston. Oh boy, Theo is hooked (no pun intended)! Now, he wants to go fishing every day. And we will. All over the peninsula this summer. We will be fishing and swimming all day every day until we eventually turn into fish ourselves!

“The charm of fishing is that it is the pursuit of what is elusive but attainable, a perpetual series of occasions for hope.” – John Buchan

Just a friendly reminder to GO DONATE BLOOD TODAY! Your blood will save lives.

Theo was on KING 5 news! You can check it out here: https://www.youtube.com/watch?v=-xNCva_dezE

The other day I was listening to a podcast with Paul Bloom, psychologist, author, and professor of psychology at Yale University and University of Toronto. He was having a discussion with the podcast host about human capacity to reason, the nature of human memory, and how events shape our lives. He said something that right away caught my attention. “Humans poses a negativity bias. When something bad happens to us, we tend to think about it too much.” I had to hit the pause button and think for a moment. Did I agree? Absolutely. You could be having a very calm, lovely day but then as soon as something bad happens, it takes over. It’s all you think about or talk about for the rest of the day, or maybe even months! But when something good happens, it doesn’t have the same effect. The negative is more powerful than the positive. Just look at the news! As I continued my search to validate this claim, I found endless examples… until I thought about Theo. He is an exception to the rule. He has the ability to let bad news bounce off his shoulders. Like there is an impenetrable force field of positivity surrounding and protecting him. A few weeks ago, Theo was close to reaching a fever and almost had to be admitted to the cancer care unit. You would think he would be upset, disappointed, dreading it… especially after everything he has been through. Without a doubt that’s how I felt. But not Theo. His reaction when I told him we might have to stay at the hospital was unbelievable. He said with a smile, “That’s ok. At least we can draw on the windows and order guacamole whenever we want!” Silly me. Here I am freaking out while Theo is looking on the bright side. Thank you, my sweet boy, for reminding me to breath and focus on the positive. I can see it, I can feel it, radiating all around him. There is a light inside him that is so compelling and bright. He is pure sunshine.

Thankfully, Theo did not need to go back to the cancer care unit. But we have encountered a few roadblocks this far out from transplant day. Yes, even past day 100.The most challenging mystery we have delt with is the tummy pain. Here we are, one month later, and we are still talking about it! My food and medicine journal is FULL of notes about Theo’s bowl movements. Every detail, down to the duration, frequency, and symptoms he is experiencing. I’ve had multiple hour-long conversations with his doctors about it. The most frustrating part is that at the end of the conversation, nothing is solved. We are back at square one, scratching our heads and once again looking at the long list of possibilities. By March 30th (day 108) Theo’s blood counts were on a steep decline and his electrolytes were all out of wack. Most alarming was that his liver enzymes had risen to a dangerous level. Something needed to be done, quick. The signs were all pointing at Disatinib (oral chemotherapy). Theo started taking Disatinib on Thursday March 16th (day 95), once daily. The following two weeks Theo had diarrhea, abdominal cramps, toxic toots, and was feeling lethargic and icky. Fortunately, his doctor ordered the stop of Disatinib. Could that be the culprit? His doctor said “MAYBE”. It’s so hard to know the exact cause when there are so many pieces to the puzzle. Theo’s history of GVHD, his sensitive healing gut, the Norovirus (still shedding from his gut lining). The answer is that it could be a combination of many things. But if you ask me? My answer is YES, Disatinib is to blame. He stopped taking it, and like magic, Theo’s energy returned, his tummy pain went away, and he started having normal bowl movements again. Coincidence? I don’t think so.

So what do we do moving forward? What is plan B? On Monday, April 17th, we had a meeting with Theo’s BMT doctor and the oncologist who was part of his pre-transplant team. The oncologist is leading the research on the benefits of oral chemotherapy post-transplant to prevent the return of leukemia. She is primarily focused on the cancer treatment and the prevention of a relapse. The BMT doctor’s main focus is the transplant itself and the recovery following, along with finding the right dose of medications and immunosuppression that allows the patient’s immune system to grow strong. The two doctors must work together to find the right balance to promote recovery while maintaining remission. We understand the importance of Disatinib, but at what cost to Theo’s quality of life? There were days when Theo would not get out of bed and barely ate while taking Disatinib. That is not recovery. That is not getting stronger. Both doctors agreed. The plan is to continue oral chemotherapy BUT at a much lower dose, less than half. If Theo tolerates the lower dose, we will continue and eventually try to increase the dose in a few weeks. If Theo does not tolerate the lower dose, then they want to try switching back to Imatinib and see if that works.

Two steps forward, one step back. Theo’s tummy pain was gone. So what now? On Friday, March 31st (day 109) small pinkish-red spots started appearing on Theo’s back, hip and grown area. They were not itchy and according to Theo’s doctor, did not resemble the typical rash associated with GVHD. As days went by, the rash spread and became more noticeable. I must have sent at least 20 photos of his rash to his team via MyChart over the next three days. Next, came the elevated temperatures. Theo’s temperature was bouncing back and forth between the yellow and orange zone for several days. When the temperature is in the yellow zone, it needs to be re-checked every hour. If it gets into the orange zone and stays there for an hour, then you need to call the hospital and likely go into the ED. I packed a bag for the hospital while my heart pounded in my chest. Fortunately, Theo never got a true fever and we got to stay home. What was it? What was causing it? Who knows!! Another mystery. Possibly a virus, possibly a delayed reaction to the Disatinib. Even the dermatologists didn’t have a clue. Theo’s temperature went back down but the rash eventually became super itchy and uncomfortable. That’s when GVHD made a comeback into the conversation. That is the last thing Theo needs right now. He is so close to being done with the steroids. Luckily, his doctor did not hold the steroid taper. Instead, we applied Triamcinolone ointment (topical steroid) twice a day to his entire body. It worked! The rash disappeared in the next couple of days. Hooray! Another monster defeated. The coast is clear… for now.

April showers bring May flowers… and our family back together at home. How is it being home? Wonderful. We are together at last in our home!! One step closer to life feeling somewhat “normal” again. If you ask Theo what his favorite thing is about being home he will say, “cooking with my papa and eating delicious food with my family all together”. Food is Theo’s passion. Cooking with Luis brings him the greatest joy. He has this brilliant energy that comes alive as soon as he starts talking about the food he is going to make and eat. His eyes light up and he speaks with such intensity. He has even started recording recipes with instructions on how to make his favorite dishes in a notebook. If you ask me, Theo IS the secret ingredient to any recipe. Just watching the way he seasons and sprinkles herbs onto food. He is creating art. I am so spoiled with delicious food. Since coming home, Luis and Theo have made soup, steak, fish, shrimp, enchiladas, clams… and so much more. Theo loves seafood. This past weekend he planned a “seafood fest” with Luis. They made a buffet of their favorite seafoods. If I could, I would send every one of you a personal invitation to come over and eat with us. But I guess you’ll just have to wait until Theo opens his seafood restaurant on the beach in Mexico to get a taste. That’s his plan! Theo also loves the nature surrounding us here in Kingston. He says the city is too loud. The connection with nature and wildlife is so much stronger out here. We see bald eagles daily, and watch doves and woodpeckers swoop and bathe themselves only feet away from us. At night we hear frogs and crickets in the forest behind us, nothing else, it is so quiet. The sky lights up with so many stars on a clear night, we get lost just staring at them. There is so much unknown, so many mysteries out there in the great big universe. As I stare up at the wonderous night sky with Luis and Theo by my side, the rest of the world, worries, and problems disappear.

Presently, Theo is doing great medically. His doctor is very pleased with how he is progressing and relieved to see that his blood counts immediately recovered after stopping Disatinib. She has no concerns and is eager for him to be done with steroids (as are we). Theo is currently taking 4mg of prednisone a day. Soon it will be 3mg, and then he will switch to hydrocortisone. It may take some time for Theo’s adrenal glands to wake up and function normally again. It’s expected to happen after being on steroids for as long as Theo has. His doctor has taken him off some of the other medications as well. The number of pills per day is slowly decreasing. Every time she tells me she is reducing or removing a medication, she says it with this big, beautiful smile. It’s like she is giving us a present every time and it feels like a warm hug. Theo also had his central line removed on Monday, March 27th (day 105)!!! We had been counting down the days until his line removal for such a long time. It was so easy, so quick! Five minutes and BAM! It was out. Theo celebrated with – you guessed it – a seafood spread. Luis came over to my parent’s house (on his lunch break from work) after the procedure and whipped up calamari, prawns, and crab within 10 minutes. Melt in your mouth marvelous. Happy does not describe how we all felt that day.

Now, Theo only has to go to the hospital once a week for a lab and provider visit. Every Sunday we pack our bags and head back to my parent’s home for a couple days stay. We are so fortunate that coming to Seattle is not a struggle. A visit to Seattle means time with my parents and friends. It’s a treat for us. Mormor has dinner ready for us and we play Yahtzee with my parents (when Theo has energy). The ONLY downside to not having a central line is the difficulty of blood draws. It is NOT easy to draw blood from Theo’s tiny veins. We encountered this exact same problem two years ago after Theo’s power port was removed. The central line meant no numbing cream, no pokes, and a steady flow of lots of blood. Now, it’s the opposite. Theo has to drink A LOT of water (more than 60 oz) the day before a blood draw to make it even semi-possible to draw blood. We were told that all the chemotherapy and radiation can shrink the veins. Medications can also contribute to dehydration. None of the nurses in the BMT clinic have been successful at getting blood from Theo, not even the charge nurse. Theo has to go to the main lab to see the specialists – the phlebotomists. Still, even the pros have a difficult time. If you saw Theo’s hands and arms you’d understand. They are black and blue all over from the all the pokes. Does Theo complain? Never.

“Are we there yet?” That’s me. I’m that kid in the back of the car asking if we have reached our destination, eager to get out of the car even though we have only made it out of the driveway. There is still a LONG WAY to go!! How is Theo doing? It’s complicated. Today Theo might feel great, but tomorrow he might not want to get out of bed. This is a marathon, and there are obstacles and bumps along the way. His body has been through so much. It’s taken a brutal beat down while at the same time trying to manage all the medications. Like building a house on quicksand. It’s not a perfect science, it’s finding balance. Theo is not recovering from a broken arm. He is recovering from having his immune system wiped clean and a stranger’s bone marrow transplanted into his body. You know the saying, “Rome was not built in a day”. Well, neither is an immune system. Sometimes the treatment doesn’t work as you hoped it would. BUT sometimes, you roll a Yahtzee twice or you see two shooting stars!! It works out even better than expected… and it’s more exciting and more beautiful and more fantastic than you ever imagined it to be.

“Food is not just fuel. Food is about family, food is about community, food is about identity.” – Michael Pollan

Not a sound to be heard. Not a squeak, not a word. The air becomes paralyzed in the night, as shadows swallow up all the light. The darkness so thick, you can barely see, while coldness creeps up houses and trees. Eyes heavy as dreams start to dance. The world closes in before the last glance. A peaceful slumber is what I need. To be rooted in bed, just like a weed. But outside there is an infinite abyss. Of planets and stars, in silence and stillness. So many questions about life to ponder. Thoughts race, and my mind starts to wander. My body is ready to loosen and let go. But my mind is still spinning, and emotions grow. The smile I wear all day disappears, as anger and sadness arise from my fears. I try to ignore it, try to push it away. But the more I try, the longer it will stay. I thought the poison was already gone. But this venom runs through me, I guess I was wrong.

“The witching hour” in Roald Dahl’s book, The BFG, is when all the dark things come out in the middle of the night. I do not believe in monsters, and I am not afraid of the dark. But sometimes, when I’m lying awake at night, unable to sleep, the witching hour approaches, and dark thoughts come sneaking into my room and fill my head. You know how it is. You’ve been there. Unable to sleep. Restless because your mind won’t stop. Theo falls asleep. He had his shower, took all his pills, his line is flushed, teeth are brushed. There is nothing left for me to do but sleep. But the monsters that I have been pushing away all day are waiting for me. All day every day, I am with Theo. Smiling, energetic, happy, full of hope and ready for greatness to happen! There is no room for panic or worry. There is no point to panic and worry. I do my best to control what I can and let go of what I cannot. I want to be my best self, the best caregiver for him. Stay positive. Negative emotions are kept to myself, tucked inside until I am alone, at night with my thoughts. Theo is pure joy. Well mannered, funny, brilliant, silly, and packed full of unconditional heart-warming love. It’s nearly impossible to be in a bad mood when I’m with him. Like I’ve said before, HE is my teacher. So, it breaks my heart watching him go through this. Putting up with it all. He works so hard to get better and NEVER EVER complains. That is my anger. He is fighting for his life every day. When Theo relapsed in June 2022, I wrote, “I have spent the last 7 days shedding so much anger and sadness and there is still more to let go.” Well… I’m still working on it.

Tomorrow is DAY 100!!! You don’t know this, but I am screaming on the inside right now. It feels like we just made it through the Fire Swamp from the 1987 film The Princess Bride. We made it past the delicate and very unnerving initial part of recovery. Also (and this is my absolute favorite part) Theo gets his central line removed next week!!! Talk about the best birthday present EVER! No more dressing changes, line flushes, cap changes. Theo is most excited because finally, he will take a bath comfortably, without an Aqua Guard covering his central line. It’s been nearly 10 months with those two lumens dangling from his chest constantly. Last September, Theo asked me to buy him a fancy (and expensive) bath bomb. He has been saving it ever since then for his first bath without his central line. Certainly, something to celebrate. We are not heading home to Kingston yet, but soon. First, the doctors need to determine if Theo’s body is ready.

So how do we know when Theo’s body is ready? When we look at the human body, there is SO MUCH to see! Our bodies are very complicated, interconnected machines. Every part of Theo’s body and blood work is monitored to make sure it is performing as it should. The tricky thing about bone marrow transplants, is that at any moment, something can change, and the reason is not always obvious. Presently, Theo is doing very well. “Exceptionally well” says his BMT doctor. He recently had an echocardiogram that showed his heart function being within normal range. He also had a bone marrow aspirate done on March 16th, results pending. His blood counts show a growing immune system, and all other numbers from his blood work show normal functioning organs. Phew!! He also recently had a bone density exam to see if there’s been any delay in bone growth. And he did the pulmonary function test again to compare the results with those prior to transplant. So far so good. There are no major concerns. The one issue that continues to be the roadblock in his recovery is the graft vs host disease (GVHD). It is the pestering pebble stuck in the shoe. The eyelash in the eye. The itch on the back you cannot reach. Just go away already!! We must be patient. It just takes time. Theo’s rash finally cleared, and the steroid taper started again. He is currently taking 10mg of prednisone a day, tapering down 0.5mg every 3 days. At this rate, he is scheduled to be done with steroids by mid-May. As long as Theo’s tummy cooperates, we should be able to go home early to mid-April.

Every time Theo has an issue with his tummy, I send a message to his team through MyChart to report the issue. I have recently sent several messages with titles such as, “toilet time”, “tummy troubles”, and “icky update”. Theo’s tummy is behaving like a rollercoaster ride. Some days are good, no issues. But then there are days when he has abdominal cramping, tummy aches, and the overall feeling of being “icky”. It seems to come and go, no matter what or how much he eats. Theo has acute GVHD. This type of GVHD attacks the skin and the gut. That’s why he is on multiple types of steroids. Not just prednisone. He also takes Beclomethasone and Budesonide, two types of topical steroids that target healing the gut. The prednisone is what turns him into a hungry hippo. Theo is still thinking about food ALL DAY. He locks onto one thing and obsesses about eating it until he gets it. It’s crazy!! And it’s so random. Out of nowhere he suddenly wants shrimp, zucchini, or twisty noodles (and yes, they MUST be twisty). He will keep bringing it up, all day, until he eats it. Overall, his diet has been very healthy. His doctors are amazed at what he eats, especially for a seven-year-old boy. He eats his usual favorites like cereal, eggs, toast, and fruit for breakfast. Smoothies, dumplings, rice, beans, fish, spaghetti, soups… and lots of vegetables. He truly eats just about anything (and loves to talk about it). But then of course every now and then he craves greasy fried chicken, fatty bacon, or buttery clams. With his stomach acting the way it is, we have to be extra careful about what he eats. One day I told him he needed a break from greasy fatty foods. Uh oh. Theo did NOT like that. He had a back poke coming up and was planning on eating fried chicken afterwards. He started sobbing!! “No cheeseburgers?! No bacon?! No fried chicken?!” He is extra sensitive on steroids. I must have told him at a bad time, because a couple hours passed, and he was totally fine about it. He told me, “It’s really no big deal, it’s not forever, and those foods aren’t that good for me anyways.” Good grief, what a relief! So, what is causing the abdominal pain? Could be a lot of things: GVHD, a still very sensitive stomach, backed up stool in his intestines, difficulty absorbing fats, all the medicine/pills he takes daily, especially the chemotherapy pill Disatinib he recently started taking. The two most common side effects of Disatinib are GI upset and fatigue. You name it, there are several reasons for his tummy to be unhappy.

Theo’s tummy may be unhappy at times, but Theo is a happy clam. Nothing makes him happier than an adventure with his mama and papa. That’s when Theo says, “I feel like a normal kid again.” We don’t go far, of course. Just out to the park, to play, stroll, or catch a beautiful view. It’s a special time, for the three of us to be together, having fun and laughing together. Theo loves to show Luis all of the art projects he’s been working on, a new skill he’s learned, or something funny that happened during the week. He was most excited recently to show Luis how he can play tennis. We just started playing about one week ago and now he’s hooked. He has also played with his best friend at the park! What a treat. These family outings and seeing his best friend recharges Theo. That’s the best medicine. The daily goal remains the same: feel good and have fun. Theo is staying busy with his appointments at the hospital. Twice weekly labs and provider visits. Occupational Therapy and Physical Therapy are twice weekly appointments. They are always fun, playing games, sports, or doing fun projects. Theo also gets to go the hospital classroom for in-person learning with his teacher and up to two other BMT patients (1-hour sessions) up to four days a week. Mike from Art Therapy has included Theo in a very special art project. Theo got to paint on fabric that is going to be a part of a real astronaut uniform! A real astronaut is going to wear Theo’s design in outer space! He’s one busy bee. He’s still doing online school (2nd grade) with me during the week and piano lessons with Mormor. With any extra time, we are squeezing in as much fun as possible. Bike rides, tennis, baseball, walks, workouts… doing our best to meet our daily goal: feel good and have fun. Each day, I get another daily dose of snuggles, love, and smiles with Theo to help keep the nighttime monsters away.

Knowing how to support someone who is battling cancer is not always easy or obvious. A lot of people want to be supportive but don’t know how. I heard from several people that they wanted to reach out but didn’t know what to say. They were thinking of us but wanted to give us space. It’s common to wonder, “What should I say?” “What should I do?” “How can I help?” And it goes both ways. Avoid any awkwardness, right? Many patients and caregivers do not like to ask for help, or don’t know how. They suffer in silence, hide their pain or push it way in hopes that it will be lost or forgotten. Caregivers are so focused on staying positive for the patient but often falling apart inside. Especially while in the hospital, a place that is filled with pain and distress. You don’t have to understand what they are going through. Why should you? But you can support them in so many ways! Here are a few things you can do that a cancer patient or caregiver may appreciate. LISTEN to them. Let them tell their story and share their pain, without you needing to understand or give advice. Reach out, let them know you are there for them. Keep checking in. Do not stop checking in just because you haven’t heard back. Offer to go on a walk with them. Bring them a coffee. Send them a card. DONATE BLOOD! Donate to cancer research! Theo loved it when he received cards from his classmates, a video from his best friend, or an email from someone he admires. It doesn’t take much. But it always brought a smile to his face to know people were thinking of him and that he was missed. An older man (a patient receiving radiation) who had seen Theo in the Radiation Oncology Clinic at the UW sent Theo a Spider-Man plushy with a friendly note. It brought me to tears that a complete stranger would do something so sweet to lift Theo’s spirit. And there was so much more! Books, toys, blankets, slippers, cozy hospital clothes. But even just a simple, “I’m sorry you are going through this” means a lot. I never dreamed that MY CHILD would have cancer. That we would be on this side. The side receiving help and support. No one ever thinks that. But now that we’re here… we know what has helped us and we are grateful for the support and love.

“Open your eyes and see what you can with them before they close forever.” – Doerr, Anthony. All The Light We Cannot See. Scribner, 2014