Hi my name is Theo, I have a story to tell.
About why I go to the hospital so much, and it’s not because I fell.
It started back in December, I was only four years old.
I wasn’t feeling great, the doctors said it was a cold.
In January I was still sick, my face was as pale as a ghost.
No energy to play on the monkey bars, the activity I love the most.
I went to see the doctor again, I thought, is this a joke?
He said I needed to get blood drawn, then I got FOUR pokes!!!
I got poked again in the ER, that time wasn’t as bad.
Because they used numbing cream, and let me look at an iPad.
I had to stay in the hospital, for about a week or so.
I was told I have leukemia, which is cancer of the bone marrow.
My mom and dad were worried, so shocked that I had cancer.
They wanted to know why I got it, unfortunately there is no answer.
Now I need lots of medicine, called chemotherapy.
Each phase of treatment is different, lasting two years maybe three.
At first I had a tube, that was put into my arm
Used for medicine delivery, so my veins would suffer no harm.
But now I have a port, it was placed under my skin.
A bump next to my heart, that’s where the needle goes in.
I also take other medicine, some in liquid form or pills.
They taste so terribly yucky, the flavors give me the chills.
But now I have an NG tube, for medicine to go through.
I don’t have to taste anything, it’s so easy now, who knew!?
I have so many appointments, some last all day long!
Especially if I need blood or platelets, to keep me feeling strong.
I am also bald, no hair on my head to be seen.
It’s from a medicine, a side effect of Vincristine.
Sometimes when I get sick, after chemotherapy
I don’t feel like eating or walking, it takes away my energy.
That’s when I take formula, to get the nutrition I need.
It goes through my NG tube, a motor pumps the feed.
My temperature is checked, in the morning and at night
Because if I get a fever, it means something is not right.
My immune system is weak, not like how it was.
All cells good and bad are killed, that’s what chemo does.
My body cannot fight, bad viruses and bugs.
So I have to be extra safe, no high fives, kisses, or hugs.
When I do get infections, I stay in the hospital.
It can take days, even weeks, for my body to fight it all.
I can’t wait to go to the aquarium, and see my friends at school.
I miss going to the zoo, and swimming at the pool.
But going to the hospital, isn’t all that bad.
The doctors and the nurses, are so smart, kind, and rad.
They work so very hard, taking care of kids like me.
They are like super heroes, that’s what I want to be.
I know it will be soon, when my treatment is all done.
Feeling strong and healthy, back to ME having fun!!!
We are sailing along the ocean, nothing but blue skies all around. Sipping champagne in our bathing suits and sampling fresh oysters from the sea. Tropical fish swimming below us, a bright yellow sun above us. The smell of salt water and sun tan lotion inhaled with every breath. I jump into the water making a big splash, so refreshing. Floating with such ease, like in a lounge chair. “BEE-BONK! BEE-BONK! BEE-BONK” What in the…?!?! Ugh, it’s the feeding pump alarming to tell me there is a kink in the tube again. Okay Okay! Here I come. Awake and now very grumpy, I press the pause button on the motor and search for the kink that has formed under Theo’s cheek from turning his head while asleep. There, all fixed. I press the start button on the motor and go back to my fold out hospital bed. It’s 2 am. I have another two hours until the nurse comes in to take Theo’s vitals and turns on that obnoxiously loud blood pressure cuff. Two more hours to drift back into my dream of sailing. Now, where was I? Ah yes, I was floating…
Theo has completed Part 1 of Delayed Intensification #1. Part 2 is scheduled to begin on day 36, but only if his neutrophils (ANC) is above 500 and his platelets are above 50,000. A few weeks ago I would’ve told you (and likely did) that Theo will have no problem getting through this phase. That this phase is easy and therefore it is unlikely that we should encounter any delays. Today, I will tell you the opposite. It’s called Delayed Intensification because the most intense side effects of the chemotherapy drugs are delayed. That sneaky Doxorubicin. And here I thought all along it just caused a little nausea. That explains everything! It explains why we didn’t have any issues until AFTER week four. Like, Theo’s ANC tanking to nearly zero. The bilateral ear infection. And the fever that led us to a ten day hospital stay. Surprise! Turns out Theo’s doctor was right all along. This phase is not easy. It has its challenges for sure, it just took some time for them to be revealed. Like a small hole in a boat. Give it time for water to leak in and the boat will eventually fill up with enough water to the point of sinking!
On Tuesday, August 4th (Day 29 of Delayed Intensification #1 Part 1) Theo went into clinic for his last dose of Vincristine and Doxorubicin. Up until then his ANC was still very high, well above 1,000. By day 29 though, it was starting to drop, and fast. One more dose of chemotherapy would only make it drop more. Theo’s doctor noticed that both of Theo’s ears were very red and irritated. She was worried that it was the start of an ear infection. Concerned that the ear infection could land Theo in the Cancer Care Unit, she confirmed that the antibiotic he was already prescribed would help prevent the infection from getting worse. Needless to say, we were warned…again. The next morning Theo had a high temperature. Not high enough to rush to the hospital, just high enough to put us on edge, bite our nails, and say a few Hail Marys that his temperature would go back down. Well it didn’t. It reached 100.5 F and stayed there for one hour. I called the Hematology/Oncology clinic and they instructed me to bring Theo in. We had 30 minutes to get there, otherwise we would have to go through the Emergency Department (ED). We packed liked maniacs and flew out the door.
The doctor we saw in clinic told us that she did not expect us the be in the Cancer Car Unit for long. There was no urgency for him to be admitted right away. But his ANC was dropping and based on the redness of his ears, she thought it was better to be safe than sorry. “It may just be one night, maybe two” she said. We agreed. There was a good chance that if we went home, Theo’s temperature would go up even higher and then we would have to come back to the hospital again, but through the ED, which is never ideal. We were already there and besides, it’s only one or two nights anyways, then we’ll be back home. Theo looked healthy. He had energy. He was having no pain and his nausea was under control. So WHY did he need to stay admitted for ten days?? That’s exactly what we were scratching our heads about. The lead doctor in the Cancer Care Unit gave it to us straight during rounds the next morning. Theo’s ANC was below 200 and continuing to drop. He had a bilateral ear infection that his body could not fight. He would need IV antibiotics until the infection cleared and his ANC returned to at least 200. When an infection is present in someone who is neutropenic, ZERO risk can be taken. Without IV antibiotics the infection can easily worsen and move to other parts of the body. Being at the hospital would be the safest.
Just to be clear. Being admitted means that Theo becomes “inpatient” and has to be transferred to the Cancer Care Unit. Located in a different wing of the hospital, it has it’s own specialized staff of rotating nurses, doctors, fellows, residents, and nursing assistants. We enter the hospital through a different entrance and carry a separate badge to get in. The doctors in the Cancer Care Unit communicate with Theo’s doctors from the Hemotology/Oncology Clinic daily. The doctors in the Cancer Care Unit, however, do not know Theo the way his doctors know him. Every day while admitted we meet a new face, someone assigned to Theo’s team for the next day or two. We go through the routine of introducing ourselves and then answer the same questions we have been asked by everyone else. They say hello to Theo, listen to his heart and lungs, do a visual exam, ask us how he’s doing, then leave. It is rare but sometimes we get the same nurse two days in a row. For these reasons it is especially important to… you guessed it… ASK QUESTIONS. We need to be on top of it and pay very close attention to everything that is going on. And when in doubt, call Theo’s doctors from the Hematology/Oncology Clinic!! Just because we are not in clinic doesn’t mean we can’t ask them questions. After all, they have been caring for Theo through it all, since day one, “our people”.
Theo had one traumatic experience while admitted that was unusual. A patient can only have the same access needle in their port for seven days before it is replaced for safety and infection control purposes. Theo needed to be re-accessed. Remember in my last entry I said that getting accessed was a non-issue for Theo? Well, not this time. After taking out his needle, the nurse applied numbing cream over Theo’s port site and returned in one hour. We informed the nurse that Theo needs longer than average (at least 1.5 – 2 hours) of the numbing cream sitting on his skin for it to get completely numb. She told us that the cream had been on long enough and that he should be numb. Prepping the access site begins with using chlorhexidine wipes over and all around the port site. Theo’s site had been bleeding from the last needle being removed and his skin was raw and red underneath from the dressing that had been covering it for the past seven days. Once the sting of the chlorhexidine made contact with his skin he let out a piercing scream and started yelling that his entire neck was burning. Next the port has to be felt, in order to know where to push in the needle. Theo’s skin was so sensitive he began screaming even louder as she pushed and felt around his port. Finally, the needle went in. And YES, Theo felt every bit of the needle stabbing him through his chest. For the first time in almost six months, no blood came back through the tube. The nurse had to take the needle out and do it all over again, starting from the very beginning. What?!?! We added more numbing cream, ice packs, and one dose of Ativan. FOUR tries and four hours later, his port was accessed. What a disaster. I don’t even think the Ativan took effect until 30 minutes after the process was all over. I could tell because Theo was extra lovey dovey with me all of a sudden. He held my face close to his, gave me a big smooch on the lips then said, “Mama, you have the prettiest green eyes”. Haha my little lover boy. Well, at least he was feeling better. What can I say? There’s never been an issue when getting accessed in clinic. Then again, the outpatient nurses in clinic access kids all day every day. Next time I will make sure to call on them if we end up admitted in the future. Being inpatient we still get spoiled by amazing nurses. It’s just a different environment. One of higher stress, unpredictability, and unfamiliarity. We are so fortunate for Children’s Hospital. For Theo to receive such outstanding care from some of the world’s best doctors. As much as we don’t like having to stay at the hospital, it is what Theo needs. It is what’s best for him and that is what really matters.
So there we were. Back at Hotel Children’s. Back to the routine of vitals every four hours, meeting new doctors and nurses, helping Theo to the bathroom while attached to an IV pole. Theo developed mucositis in his gut again, which led to complications like leaky diarrhea, painful pooping, and lack of appetite. It was the hot topic of conversation during doctor’s rounds every morning. I have never in my life imagined that I would talk about poop so seriously, so descriptively, so passionately as I have these past seven months. But hey, poop matters! Unfortunately, Theo is barely eating at all now so he is back to needing the feeding pump (bummer). And sadly we had to throw away several of his favorite underpants. Not fun… but it could’ve been SO much worse. We have reached the point now where we are so used to it all. What once felt like walking into a haunted house now feels like walking into IKEA. It’s just annoying. Even Theo has become more accepting of his time there. He stopped asking “do we get to go home today?” Instead he would ask, “are my neutrophils going back up?” He gets it. Theo has a very good understanding of what is going on. He is a great listener and observer. I have been called out several times for bending the truth to make something sound better in hopes not to upset him. “Oh I don’t think you have to get poked like that again” or “our next appointment might not be as long”. Usually it is because he is wandering if he is going to be in pain. I don’t want to tell him “yes, it will hurt” but it’s better for something to turn out easier than expected than vice versa. It is silly of me to think that I can sneak something by him. Like I’ve mentioned before, he knows more that we think. I have learned it is always BEST to be very direct and straight forward with him, no matter how bad the truth might be. I think the hardest part of being admitted, for Theo, was just being stuck inside that hospital room day after day. He had energy and wanted to go outside to play. He was not experiencing any pain or discomfort from the ear infections. He hadn’t had a fever since the day we were admitted. We found ways to keep busy with puzzles (obviously), coloring, card games, and his favorite: gym time. Theo loves going to the gym to play. It requires having an appointment with a physical therapist so he couldn’t go every day, but on the days he could go, it was the best 30 minutes ever. Theo is five years old. He wants to play, run, battle, jump, and just be silly! That, my dear loved ones and friends, is pure joy.
Theo is himself. He is silly, playful, thoughtful, and witty. This is the BEST Theo I have seen through all of this. Despite the leaky diarrhea, heart burn, gut mucositis, and lack of appetite. He has maintained such a positive attitude and taken hit after hit like a true champion. Theo is our hero. If he can do it, then so can we. Luis and I are not always as positive as Theo. We don’t always know how to shrug our shoulders like Theo and just look ahead. We don’t always know how to get through this. THIS is hard. Crushing. Inconvenient. Emotionally draining. Theo keeps us strong. We continue to remind ourselves that if Theo can do this, then so can we! On the morning of day ten I called Theo’s doctors from clinic. One of them was actually already on her way to stop by for a visit. She could see how good Theo looked, his high energy level and good spirits. We both talked with his other clinic doctor on speaker and later that day he was discharged. ALL doctors agreed it was okay for Theo to go home. Just in time for Theo to cool off with a run through the hose, squealing and laughing with his BFF Bobo the monkey. Good energy? Oh yes, I think so.
“A true hero isn’t measured by the size of his strength, but by the strength of his heart.” – Disney’s Hercules