I can still remember the first time I saw Theo smile. It was beautiful. I wanted that smile to last forever. Like a drug, I was instantly addicted. I craved it every time I picked him up in my arms, like my life depended on it. Finally! After months of feeling like some crazy sleep deprived maniac, I saw that smile. So many sleepless nights, crying, spitting up, changing diapers, and singing songs until my voice was gone. I was delirious. But then… there it was. That handsome smile, telling me that he loved me back. I knew that everything, every moment, every dirty diaper and minute of sleep lost, was all worth it. I saw it, he was happy. Here in the hospital, I crave that smile more than I ever have before. Because every time I see it, my heart breaks a little less.
It happened so fast. Theo’s energy melted faster than a snowman on a hot summer day. Here today, gone tomorrow. Not right away. Later than expected, but it still faster than the speed limit. Not that we were expecting him to have energy. We were well informed of what was coming. It’s just that he was feeling SO GOOD so far into treatment. Theo was admitted to the cancer care unit at Seattle Children’s Hospital on December 5th, 2022, the first day of Conditioning (DAY -7). The week prior to that, Theo had three consecutive days of radiation to his brain. This was in addition to the four days, twice a day of full body radiation he got the week of conditioning. One day at the radiation clinic, Luis told Theo that it was okay to feel more like 80%, because it’s normal to slow down a bit. Theo, agitated at the comment, corrected Luis immediately saying, “I am 100%!!” Incredible. He was drinking the required 55oz and more of water a day so he would not need to be hooked up to the IV pole for fluids. He was doing his school lessons. He was scooting through the hospital hallways after his radiation appointments. He was eating A LOT. It wasn’t until the fourth and final day of radiation that we saw him start to slow down. A little less chatty, a little bit slower, but still feeling good. He needed very minimal anti-nausea medication. Radiation days are very busy. We were given the option on the first two days for Theo to be transported to the UW radiation clinic via ambulance. We chose to drive because Theo didn’t need to be in a stretcher. He wasn’t weak or needing anesthesia for his treatments. It was also faster and easier to drive. We had to go back and forth two times a day, so the less time we had to spend waiting in the clinic, the better. The radiation clinic is the opposite of bright and cheery. It’s dark, no windows, and full of tired sick adults in hospital gowns, waiting for their radiation treatment. Leave it to Theo to bring the sunshine. Smiles lit up all around the clinic as he marched through the hallways, sometimes dressed as Spider-Man. Always chatting and laughing with the friendly staff as he prepared for his turn. “Any music requests during treatment?” They asked him. “Imagine Dragons” Theo replied. It was no surprise when the radiation oncology doctor told us that Theo was doing “better than expected”. It was a good strong start to conditioning. Then came the chemotherapy…
On day five of conditioning, Theo received his first dose of Cytoxan (Cyclophosphamide). On day six, he received another. If Theo wasn’t tired, and having pain and nausea yet, the combination of radiation and high dose Cytoxan would surely do the trick. It was only a matter of time until the energy would be forcefully stripped from his body. He fought it. He didn’t want to slow down. He didn’t want to lay in bed and rest and watch cartoons. “TV is boring! I want to play ALL DAY!” Theo exclaimed. He tried. From Legos, to putting up Christmas decorations, to painting. He wanted to do it all. His brain would not settle. From sunset to sunrise, the lights inside Theo slowly turned off. Not all at once. One switch at a time, room by room, floor by floor, until…
Dark. By DAY -1 it was gone. All of the nasty side effects from conditioning suddenly came crashing through the door like a tsunami, all at once. Again, we knew this was coming, but when you are living it, breathing it, seeing it every second of every day, it leaves you heartbroken and numb. On the day before transplant, Theo started having painful stomach cramps, uncontrollable foul-smelling diarrhea several times a day and at night, painful mucositis in his mouth and all through his intestines, body aches, and vomiting. Nights have been spent carrying him to the toilet, while Luis drags the IV pole behind us with a puke bag ready in his hand. Theo swallowed his pills up until it became obvious that his stomach could not hold anything. One sip of water led to cramping, followed by long uncomfortable episodes of diarrhea. It all went right through him. How does Theo feel? How is he doing? “It is the worst I ever felt in my entire life.”
December 12th, 2022. TRANSPLANT. DAY ZERO. What an emotional day. It was incredible, it was sad, it was heartbreaking, it was a celebration… all in one. There was this huge feeling of relief. After so much waiting, so much anticipation, it finally happened!! We wanted to laugh, smile, and dance. But how could we when Theo was in pain and feeling so terrible? That’s when it really hit me. This is just the beginning. The beginning of a new immune system, a new life!! But also, the beginning to a very very long and hard recovery. The transplant itself took no time at all. Maybe 15 minutes? The stem cells were delivered to our room frozen. Once they thawed, the bag was hung up on the IV pole and connected to Theo’s central line, just like an infusion. So easy, so fast, so anti-climactic! And just like that, it was over. The transplant is done, but the marathon, the real challenge is just getting started.
Today is day six, post-transplant. Theo is in the trenches. The mucositis continues to get worse. It’s been nine days now, non-stop, of diarrhea. Of course, it is extremely unpleasant and frustrating for Theo. Especially when it is constantly surprising him, making him have accidents at all hours of the day and night. However, the doctors are not too worried. His counts and organ function look good (except for his neutrophils of course. They are zero and will be for a while). Nothing is in the red. His body is on track and where it needs to be right now. He is getting nutrition and electrolytes through his central line. As long as he continues to get the right amount of fluid IN to replace the fluid going OUT, he will be fine. Therefore, tracking the “I’s” and “O’s” is incredibly important. The doctors have Theo on high alert for veno-occlusive disease (VOD). It’s when the small blood vessels in the liver get obstructed. In severe cases it can lead to liver failure. The Inotuzumab, and radiation, and chemotherapy, are all factors that put Theo at high risk. A sign of this disease is when a patient is holding onto extra water weight. So fluid balance and tracking his weight is extremely important. Gross as it may be, it must be done. Theo has to go to the bathroom in a hat so the nurses can measure and record his waste. It’s not pleasant, but Theo does it every time. I think now we are all pretty used to it. I remember a couple of years ago having to collect a stool sample from Theo to have it tested. I thought it was so disgusting! Ha! Peanuts compared to this. Really. At the end of the day, it’s just poop. Luis and I will do anything for Theo. I would clean the toilet 1,000 times a day if I had to! Whatever makes him happy. Anything to see that SMILE.
While the protocol for bone marrow transplants hasn’t changed over decades, the support medications certainly have. Comfort is KEY. Theo’s pain and nausea are better controlled now after increasing his doses of medication. He is on scheduled morphine, Ativan, Zofran, and olanzapine. Is he comfortable now? Most of the time. Frustrated? You bet. There are moments when he has break through pain, when a medicine wears off and his mouth hurts so bad, he cannot even talk. Or when he tries to eat (because he SO badly wants to eat) but he cannot because it hurts too much. He has had a few moments when he breaks down in tears, especially when he’s tired and in pain. As he should! Even superheroes are allowed to be sad and fed up. I cannot imagine the emotions and feelings he is going through. It’s more than any child should bear. But somehow, he is still doing an outstanding job of staying positive and being the sweetest most compliant patient. He does sodium bicarbonate mouth rinses five times a day at least, gets out of bed to strengthen his legs daily, and takes the few number of pills he has to take (because they are not available in IV form) when asked by the nurse. All without forgetting to say, “please” and “thank you”, even when he doesn’t feel good. What matters most right now is that Theo is comfortable. Especially because there is more coming. It will get better, but before it does, the doctors say it will get worse. HOW? One word: methotrexate.
You might be thinking, WHY more chemotherapy? Good question! Unfortunately, I do not have a great answer, other than, that’s the protocol. Based on the decades of research and successful bone marrow transplants, it’s just part of the plan because it works. Theo gets methotrexate on day 1, 3, 6, and 11 post-transplant. That means, the mucositis, the diarrhea, the mouth sores, feeling like crap… it will all get worse before it gets better. The effects of the methotrexate build up as the number of doses goes up. Theo has already had day one and day three doses of methotrexate so far. Next are day six (today) and day eleven. Theo will also have four more lumbar punctures with chemotherapy in his near future; also part of the protocol to make sure, absolutely sure, that there is no leukemia, and it will not come back. He needs cells to start the healing process. Nothing will heal until new cells grow and new cells cannot grow when chemotherapy keeps killing everything! And that’s not all. Theo is also on a strong immunosuppressant drug, called tacrolimus. It keeps the new stem cells sleepy, so they will not attack Theo’s body. The combination of chemotherapy and immunosuppressant drugs makes the healing time much…much… longer. Like I said, it’s a long process but we can do this. Theo will make sure of it.
We are spending the holidays in the hospital, but that’s OK! Because we are together. Home is wherever you make it. And this year for Christmas, home is in room 304 in the cancer care unit with my lovies. This is the first time Luis has been able to stay with us, spending the night because he is not traveling for work right now. What a difference it makes. A hug when I or Theo needs it, help with the IV pole and bathroom episodes (always appreciated), and extra comfort that Theo feels knowing that he has both his mama and his papa by his side. To give him massages when his head hurts. To remind him of his strength and how much he is loved. To play video games with! We are all happier when we are together. That positive energy keeps all our spirits bright. Except for the time I made the mistake of saying recently, while Theo was having a particularly bad episode and on the toilet for the 10th time that day, “I hope the diarrhea will go away soon.” Theo did NOT appreciate that comment at all. He fired back at me, “You mean, IT WILL GO AWAY SOON!!” Of course! Of course! It will go away. All of this. Theo WILL feel better! I felt like I had let him down. I needed to change my attitude. He reminded me that we don’t say things like, “I hope” or ” I wish”. We say, “I will” and “I can”. So, I’m reminding myself as I’m telling all of you… This WILL pass. There are beautiful days ahead. Endless smiles await.
“I’m feeling a little blue” – Theo Avila
The feast of Our Lady of Guadalupe (the patron saint of Mexico) is celebrated every 12th of December. It is the anniversary of when the Virgin of Guadalupe appeared before the peasant man, Juan Diego, on top of Tepeyac hill in 1531. This year, more than three million Catholic pilgrims made their way to the Basilica of Guadalupe in Mexico City to honor and celebrate the Virgin. A tradition that dates back almost 500 years. Also, this year, on December 12th, Theo had his transplant. He received new stem cells, a new immune system! December 12th is a day to celebrate unity, strength, and the heart. And now, for us and for Theo, December 12th is a day to celebrate a new life. A new beginning. What better day to be reborn than on the day Our Lady of Guadalupe!
2 thoughts on “A New Beginning”
I have not known Theo for very long, but he has left an imprint on my heart. I feel so honored to know this family, and am counting the days, as most who know Theo, when I can see that smile again. Kelly, you amaze me with your strength, and this journey you are on will bring more strength. Please tell Theo I am thinking good thoughts every day.
The posts are our lifeline to you three. They are the backbone of family and we love knowing you are all there, together, living a life that we can hardly imagine with such passion, love, resilience and optimism. We are connected in a way that fills us with joy, keeping the fear and worry at bay. We love you three so very much. Mele Kalikimaka! Cate and Terry