The Caregiver

When I was 32 and a half weeks pregnant with Theo, my water broke. It was not an explosive gush of water onto the floor, but a slow drip, like I was peeing my pants a little bit every time I stood up or took a step. Luis rushed me to the hospital where I was admitted to the antepartum unit. There was still enough amniotic fluid surrounding Theo to keep him safe and growing inside my body. I was kept on strict bed rest while receiving antibiotics in hopes that I would stay pregnant as close to my due date as possible. Two weeks later, at 34 and a half weeks, I went into labor, and our superhero was born. Weighing a mere five pounds, two ounces, he was 100% joy and beauty. Theo stayed in the NICU for three weeks until he was strong enough to come home with us. He was SO tiny! There’s a picture of Luis and I holding the car seat with Theo inside. You can barely see him! Theo was finally coming home, and I was never more excited and scared in my entire life. What if he doesn’t breathe after he swallows the milk? There would be no monitors alerting us to tell us when he needed to take a breath. No nurses to remind me how much formula to add to my breastmilk. No doctor checking in to make sure his vitals looked good. Theo was still so helpless, such a fragile baby. On January 18th, 2023, Theo was discharged from Seattle Children’s Hospital. He seemed almost as fragile to me on that day, as he did nearly eight years ago, leaving Swedish Hospital. My heart was racing, my mind was spinning. Once again, I found myself with that overwhelming feeling of fear for my son, who just days prior was hooked up to three different IV monitors, watched night and day by doctors and nurses, and was now going to be in my care. The transition nurse said exactly what I was already thinking, “It’s going to feel like taking home a newborn”. This discharge was like no other we had experienced before. This was the big one.

Being a full-time caregiver is a lot of work. But that’s ok, because caring for Theo is my full-time job. Luis does as much as he possibly can to help with everything, but it’s hard because he already has a full-time job. He does not live with us right now and when he visits, he has to be extra careful and wear a mask around Theo. Being Theo’s caregiver requires that I live in a bubble with him. We are together 24/7. Before the doctors would let Theo leave, I had to show the nurses that I was capable of delivering the correct meds and doses at the correct times during the day. That’s about 15 different medications (more than 30 pills) to keep track of during the day. I have a chart, a medicine journal, and alarms to help me manage it all. I even started using the large weekly pill organizer the pharmacist gave me – the one I almost threw away because I thought I would never use it. Theo was able to take one pill about every 20 minutes comfortably. With more than 30 pills to take throughout the day, it was an all-day affair, from 8am to 11pm. Theo is taking medications for immunosuppression, nausea control, viral infection prevention, fungal infection prevention, blood pressure, liver protection, heart burn, magnesium level support, and several forms of steroids to treat Graft Vs Host Disease (GVHD). Tacrolimus, an immunosuppressant, is extremely time sensitive. It MUST be taken every 12 hours to keep levels stable. If it is given even 30 minutes late, I have to call the hospital and potentially bring in Theo for a blood draw so Tacrolimus levels can be checked. I am also doing daily central line flushes, weekly sterile cap changes, sterile dressing changes, and last but not least, delivering IV fluids at night. That last one I was not excited about. It meant another three-hour training session on how to set up the IV pump and fluids and more boxes of medical supplies to take home. Not to mention having to listen to a loud pump at night with alarms. Well, at least Theo didn’t need the feeding pump! That was a huge relief. Theo’s magnesium levels were low. IV magnesium gets absorbed differently than oral magnesium, which is why Theo needed the IV fluids with magnesium. The doctors said it might not last long. Fortunately, they were right. Theo did not need the IV fluids much longer than one week. This phase in the recovery process is the heaviest. As recovery continues, things will get easier. One less pill to take, one less box to check on the to-do list. Little by little, the load gets lighter and lighter.

Theo, on the other hand, is getting heavier and heavier! He has been on a strong dose of steroids to treat GVHD since being in-patient. His appetite is voracious. He wakes up thinking about food and doesn’t stop until bedtime. When we are not at the hospital for appointments, we are at my parent’s house (where we are staying) in the kitchen making food. Before Theo is done with one meal he is already thinking about the next. Cook, clean, repeat. Over and over again. Fortunately, Theo is surrounded by amazing cooks who enjoy feeding him delicious food. My mom graciously takes dinner orders from Theo every day. What’s for dinner tonight? Spaghetti? Chicken soup? How about crepes for breakfast? We are spoiled!! And thank goodness for “traveling chef Papa”! Luis, who is super busy traveling and working, is living in our home in Kingston with our dog, Manu. We are lucky if we get to see him more than twice a week during a quick lunch break. The best days are when we get to spend time together on the weekends. But no matter how short or long a visit, Luis always makes something special for Theo. Often times Luis has shown up just long enough to cook Theo’s favorite: a juicy steak and yummy mashed potatoes, and then has to sprint out the door. Theo LOVES Papa’s food. It is medicine for his soul. Theo lights up like it’s Christmas every time he gets to see Luis. It is not easy being apart from each other. I dream of time together as a family. I yearn for time with my husband!! Patience. We will get there. But for now, Theo and I are staying safe and healthy in our little bubble, close to the hospital.

All of this delicious food and extra love has added 11 pounds to Theo’s frame. The doctors are not at all concerned about his weight gain. In fact, they are pleased to see him eating and drinking so well. It is much better for Theo to be above weight while he recovers rather than underweight. It’s only a problem when I have to pick him up to carry him upstairs! By back, ouch! The steroids will end, but it takes time. The dose is slowly being tapered down over months. Steroids cannot be stopped abruptly. It has to be a slow process. It’s a fine balance of calming down the new cells so they stop attacking their new home, but not so much that they stop growing and being active. Like baking a cake. You need just the right temperature and time, so the toothpick comes out clean. We are looking forward to the end of steroids. Not just so Theo can get back to more regular eating habits, but also so he can sleep well again. Steroids make it hard for him to sleep. He wakes up constantly with the need to have his legs stretched or because he is “uncomfortable”. The steroids were originally scheduled to stop at the end of this month. Unfortunately, the dose was recently bumped back up. Theo broke out in a rash all over his chest and back about one week ago, a sign of GVHD returning. He wakes up often, feeling itchy and needing lotion several times a night. Triamcinolone ointment is applied to his entire body three times a day in attempt to calm the rash. For now, it is mild and will hopefully go away with the topical steroid ointment. If it gets worse, the course of steroids and taper will start all over again. Apparently, it is not uncommon for this to happen. In fact, it is expected to see some GVHD in patients post-transplant within the first 100 days. GVHD can come back many times while the new cells are getting used to their new home. The good thing about MILD GVHD is that we know the cells are strong and active. It’s a positive sign that Theo’s new immune system is up and running!

Other than the GVHD returning and the possibility of it getting worse, Theos’ doctors are not on high alert or concerned about anything else at this time. Of course, Theo’s body is healing and there is still a long way to go. This is the most delicate time. Theo is required to stay within 30 minutes of the hospital until at least day 100 and all the post-transplant testing has been done and evaluated. If he looks stable and there are no concerns, then we get to go home to Kingston! Presently, Theo’s skin is dry as a desert from the radiation. In some areas it looks like lizard skin. At one point even the bottoms of his feet were constantly peeling. He also has some dark pigmentation spots that look like a healing sunburn on his arms and head that should clear up eventually. Applying thick layers of lanolin lotion to his body twice a day has definitely helped (in addition to the steroid ointment). Overall, Theo’s body is on track and doing what it needs to do. His blood counts are stable and strong, his kidneys, liver, and other organs are all functioning normally. No red markers or signs of Theo’s body slowing down. ALL GREAT NEWS.

Theo had a bone marrow aspirate done on day 63 (February 6th, 2023). He was so excited for the “sleepy milk” that after it was given, he started counting backwards, “10, 9, 8…” but instead of saying zero, he shouted, “3, 2, 1, NACHO!!!” It was a triumphant cry as his eyes rolled to the back of his head and his body flopped back like a cooked noodle. It was hysterical, the entire room was laughing to tears. The bone marrow results came back: negative! Not that we were expecting anything other than negative. But as Theo’s doctor said, “it’s good to go straight to the factory to see what’s going on.” In other words, be absolutely sure that the bone marrow is performing as it should. And it is! The chimerism results came back and 100% of the cells in both Theo’s bone marrow and peripheral blood are donor cells!!! This is THE BEST! You cannot ask for better results than this!

The protocols are very conservative here at Seattle Children’s Hospital. On day 84, Theo will have another bone marrow aspirate. Then, Theo will start taking Disatinib again (oral chemotherapy) similar to his maintenance phase of treatment back in 2021. I was shocked when I found out. WHY more chemotherapy???? Hasn’t he had enough? According to the doctors, they believe that if there is ANY chance that the leukemia can come back (because yes, there are very few cases where it has) then they should be doing everything they possibly can to make sure that it doesn’t. Instead of saying “could’ve” or “should’ve” they want to say, “we did everything we could”. Leave no stone unturned. There is no reason to think that Theo’s leukemia will ever come back. Theo is stronger and healthier every day. The transplant was a success! Having this nagging fear of the leukemia returning is just something parents like us, parents of cancer patients, have to live with. I don’t know if that fear will ever go away, but I do believe it will lessen the farther out we get from DAY ZERO, transplant day. So, we’ll look forward to every new day, keep counting, one day at a time.

“Children should never have baths, my grandmother said, it’s a dangerous habit.” (Dahl, 1983, p.122). Do you know about The Witches? They want to rid the world of children and think they all smell like dogs’ droppings! It’s a good thing those witches do not exist. Theo would certainly smell horrible to a witch and therefore get caught by one, due to how often he bathes and washes his hands! The protocols for cleanliness and staying safe are also very strict. Keeping a clean body and a clean household are extremely important for infection prevention while Theo’s immune system is still growing. So important, that they make you take a three-hour class on managing care at home and then review with the transition nurse for another hour the day before discharge. There is a very strict list of items Theo must avoid, like soil, dust, sand, construction debris, plants, animals, and even the sun! Skin cancer is the most common secondary cancer that bone marrow transplant (BMT) patients get. So, if Theo is in the sun, he will be completely covered. The cleaning protocols started to stress me out quite a bit. I started to feel like if Theo touches a surface that hasn’t been soaked in bleach, he will get sick! Now that’s absurd. Fortunately, my mom reminded me (thanks mom) we are already a very clean safe family. Who dusted the hospital room weekly and disinfected the toilet multiple times a day and wiped down every surface touched by humans in our room? The hospital cleaning crew? Certainly NOT. It was me. Theo and I are also living with my extremely clean parents, who wear masks around Theo and keep a cleaner household than Mary Poppins. Yes, we have to be more careful and follow some more guidelines, but I don’t have to stress so much about everything. And stick to what we know works: stay away from crowds, wear masks and wash our hands often.

There are so many bugs and viruses out there. Sometimes even living in a bubble cannot protect you from everything. Yes, even BMT patients can get sick from the “normal” stuff out there. Just this past weekend, Theo caught norovirus. Almost certainly from ordering take-out pho from a restaurant. The nausea hit him suddenly. At first, we were so frightened. Is it GVHD coming back with a vengeance? A stomach infection? Appendicitis? None of the above, thank goodness! It cost us two nights in the cancer care unit. Then it was passed onto me and Luis. We suffered its wrath for another two days. It was anything BUT fun, but fortunately, it was just a nasty tummy bug and nothing more. Theo bounced back quicker than all three of us and has been feeling great ever since. He gets incredibly worried when his mama or papa are sick. But leave it to Theo to make us laugh, smile, and feel better even when we are down in the dumps. Theo is a true caregiver. He cares so deeply for the well-being of the people he loves. For 24 hours, our roles reversed, and he took care of me instead. I’ll always remember the feeling of his arms wrapped around me, gently rubbing my back as he told me, “You’re going to be ok, I promise.”

Today is day 73 post-transplant!! Theo has been out of the hospital for just over one month. The first couple of weeks out of the hospital were tough. But I think we finally found our groove. We have a well-established routine and Theo’s energy is climbing fast. Leaving the hospital, Theo needed a wheelchair to get around. He was so tired all the time, so exhausted he could not stand up for more than 10 minutes. The first two clinic appointments he could barely keep his eyes open. One week after discharge, an anti-nausea medication that causes drowsiness, called olanzapine, was removed from his nighttime routine. Theo’s energy immediately showed improvement. A few days later, Lorazepam, another sedative, was removed. BOOM! The lights came back on, and Theo was awake again!! Good-bye and good riddance to you, Mr. wheelchair! Oh, what a difference. It’s like Theo had been under a spell, in this loopy sleepy haze for so long. Presently, Theo stretches every morning, takes a walk with me at least once a day, is dominating his physical therapy appointments twice a week, walking upstairs unassisted, and… (drum roll) riding his bike!! What an amazing accomplishment. I couldn’t believe it. It was a beautiful sunny crisp cold day last week, and Theo decided that he wanted us to ride our bikes along the Burke Gilman trail and stop somewhere for lunch. It was SO FUN and I was SO PROUD I couldn’t stop smiling. Theo does whatever he sets his mind to. He is focused and motivated to get healthy and strong. Theo is also incredibly aware and observant of what’s going on around him. He is not shy to speak up and correct me or a nurse if we say something that is inaccurate. Even when you think he is not paying attention, he is. He may look like he’s sleeping, but oh no. Don’t be fooled. He is listening and hears everything. He knows how to pronounce all the names of his medications. If he hears someone mispronounce a medication, he quickly corrects them. Like Dexrazoxane. Try saying that. It’s not so easy, is it? He knows he is my angel, my sweet boy. But he is also my strong warrior and teacher. He reminds me to take deep breathes, to set a daily goal, to not speak while chewing my food, and to not use words like “hate” or “stupid”. In many ways, Theo is also my caregiver. When it’s time to turn off the light and go to sleep, Theo pats me on the shoulder and says quietly, leaning towards my ear, “if you need anything, I’m right here”.

“My favorite thing about being out of the hospital is going for walks outside.” – Theo Avila

Theo is required to be within 30 minutes of Children’s Hospital until at least day 100. We are very fortunate to have my parent’s house to stay at during this time. I often think about how much harder this could be if we had to stay at the Ronald McDonald. Or if we had to move from a different state. We don’t get to see Luis very often, but at least we get to see him! There are so many families going through this who have to travel long distance for treatment. They are apart from friends, siblings, or spouses. Families torn apart… for months, even years! For as much as I complain about long stays in the hospital and being apart from Luis, we have so much to be thankful for. Thankful for my parents and their endless hospitality. For family and friends who are always checking in on us. For friends near and far delivering gifts and offering support. Thankful for food deliveries and gift cards while staying in the hospital. We thank you all from the bottom of our hearts.