On a Quest for Spring

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