The High Life

Another page has been turned, another lesson has been learned. The leaves that fell are swept away, to clear the path for another day. Thoughts drifting though the mind, once lost they are hard to find. Pour the coffee black and strong, the year is short but the days are long. A few more wrinkles here and there, a few more grays in my hair. Just keep driving can’t slow down, nothing can stop the world from spinning around… and around… and around.

At this time last year, Theo, Luis, and I were on our way to the Yucatan of Mexico. We had been counting down the days to sunshine, playing on the beach, and holiday fun with family. Looking forward to a break from the early morning rush out the door and days relaxing in the hot Yucatan sun. Conversations about our favorite delicious Mexican food spilled from our mouths like uncontrollable drool. The anticipation of the upcoming trip was buzzing through our bodies, dancing around every thought. We were overwhelmed with excitement, unaware of the gut wrenching blow that was awaiting our return. Wow, where does the time go? It feels as if we’ve been sucked into some black hole on a rollercoaster ride from hell and then spit out one year later. What the heck just happened? Where are we and how did we get here?

ONE YEAR LATER. Well, technically Theo was diagnosed on the night of January 9th, 2020. So it’s been almost one year later. We are in Delayed Intensification #2 Part 2. The LAST phase of intense chemotherapy before Maintenance!! But no celebrating yet. We still have a steep hill to climb. Part 2 is no walk in the park. Let’s review. Week one starts with a back poke (awesome), followed by a long day with Cyclophosphamide, followed by four days of Cytarabine. Week two starts with another back poke and four more days of Cytarabine. Plus there is the addition of Thioguanine daily for 14 days. Now let’s think about something. The blog entry I wrote the last time Theo went through Part 2 of Delayed Intensification was titled, Dazed and Confused. This blog entry is titled, The High Life. Hmm… Does it have anything to do with Theo being looped up on anti-nausea meds and pain killers? Yes, it most definitely does. Zofran, Benadryl, and Ativan alternating every three hours. Like I said before. It’s better for Theo to be high and loopy (meaning extra emotional and insanely silly) than to be throwing up and in pain. So that’s our plan and so far so good! Presently, he has just finished week one of Part 2. Aside from some random pain in his legs, he has not had any headaches or other severe pain… yet. Hopefully he never will, but we will see. Cytarabine is known for causing flu like symptoms. The key is to make it through Part 2 without any fevers or visits to the Emergency Department. After all, Christmas is only three days away and it would be nice to celebrate in the comfort of our own home. Theo has already mentioned that the hospital rooms in the Cancer Care Unit do not have chimneys for Santa to come down. And so how would Santa deliver presents to all the kids staying in the hospital?? The answer of course is MAGIC. Besides, we have already spent enough time in the hospital for one phase. Let’s not add more days, don’t you agree?

Do you recall how Part 1 ended? That’s right, a trip to the Emergency Department at midnight on Thanksgiving. Quite the unfortunate ending to a lovely holiday. We all headed to bed that night with happy hearts and full bellies, thankful for being able to celebrate the holiday as a family together at home. If only it had stayed that way. Theo spiked a fever of 100.8 just before bed. The rule is that we wait one hour and if it’s still that high, then we call the clinic or on-call doctor. One hour later when we checked on him, his skin was on fire. It was obvious his temperature had gone up. Sure enough, it was 101.5 Fahrenheit. We called the on-call doctor (knowing what was going to happen), packed our bags, and waited for the order.

The process of going to the ED is all too familiar now. We know how many doctors will stop by the room, what questions will be asked and how to answer them, and how long it will take to transfer to the Cancer Care Unit (a long time). I even surprised the nurse with telling her Theo’s port type and needle size before she had the chance to ask while setting up for his port access. Knowing what to expect definitely helps, but it doesn’t take away the stress of knowing how uncomfortable it will be for Theo. Constantly being poked and examined from head to toe while trying to sleep and yes, getting accessed always hurts when it’s done in the ED. And then, just when you think they’re done and Theo can finally get some sleep (because you know, it is 3am) here comes the Covid swab! Dios Mio!! It was 5am when Theo and I were finally settled in our room in the Cancer Care Unit and went to bed. Luis, who was anxiously receiving my updates and waiting for my last text that everything was ok, also finally went to bed. Theo was ok. There was no sign of infection other than a mouth sore behind his upper left molar. The doctor told us that his red blood cell count was far below threshold, which was likely the cause of the fever. How funny, Theo had an appointment scheduled in clinic the next day for a blood transfusion… but his body just couldn’t wait for it any longer. A neutropenic fever is always treated with broad spectrum antibiotics and continued until count recovery. If there is an infection present, another antibiotic is also sometimes given. The mouth sore, aka mucositis, gave enough reason to add a second antibiotic. Therefore, Theo was treated with two antibiotics: Clindamycin and Ceftazidime immediately and throughout his stay at the hospital. Let the fun begin!!

I’m usually a very light sleeper in the hospital, with all the beeping monitors, nurses coming in and out of the room with squeaky shoes, and blood pressure cuff going off every four hours. But that first morning I slept hard. I eventually woke up to a bright eyed and very energetic Theo. Well hello there! Looks like the vampire drank some blood! Yep, Theo had a blood transfusion right after we fell asleep. And boy, what a difference it made. He was like a brand new person. Laughing and playing, like a light had been turned on inside of him. What a relief. We figured it would be a couple of days, maybe two or three, until we could go home. Sure, his neutrophil count was very low at 50, but otherwise he was feeling good. Luis and I agreed to ask the doctors to be discharged even if Theo’s neutrophils were low. There were no infections, his mouth sore was going away, and he had good energy. It was like deja vu. This was exactly what happened the last time Theo was admitted with a fever at the end of Delayed Intensification #1 Part 1. There was no way we were going to let this turn into another ten day stay!! (famous last words)

Well, our little trip to the ED turned into a 14 days stay at Hotel Children’s. Wow, we did NOT see that coming. Of course we knew there was a strong possibility of Theo getting admitted, but 14 days?!? I reached out to Theo’s doctors in clinic. They know him so well and would probably agree that he would be just fine at home. Wrong. We were shut down. It was a unanimous decision that Theo stay in the hospital until his neutrophils recover to 200, or at least start moving in an significant upward trend. OK fine. We accepted the fact that we were going to be there for a while and to just make the best of it. How bad could it be, really? Surprisingly for Theo, not that bad. Honestly, it was much harder for Luis and me. Only one parent/caregiver is allowed in the hospital at a time. So Luis and I are separated the the entire two weeks, even on Luis’s birthday, no exceptions! We saw each other only when we would exchange keys and the caregiver badge in the parking lot outside. Luis always did his best to relieve me for a couple of hours during his lunch break or after his work day had come to an end. He was also frequently called upon to bring Theo yummy non-hospital food at any and all hours of the day. If you have reservations at Hotel Children’s, here’s my recommendation: bring your own pillows and a soft mattress topper, an eye mask for sleeping, LOTS of activities and creativity to stay busy during the day, a good book, and a positive attitude. Know that you will be living in a fish bowl with no privacy. Be prepared to have anyone walk into the room at anytime, that includes throughout the night. Be prepared to go to Starbucks for your coffee everyday (because that’s the only option). Be prepared to NOT sleep. You are essentially trapped in your room until the doctors say you can leave. Kidnapped. Even the team of doctors joked about it with us during daily rounds. “We are SO SORRY you are trapped here.” Each day we woke up to see the neutrophils slowly drop or just not move at all. They went from 50 to 38, 33, 21, 30, 26 to 47, back down to 42. It was like being teased! Theo’s monocytes were on the rise, which is usually a good sign that the neutrophils will go up soon. Daily doctor rounds were a repeat of “hang in there” and “any day now”. Is Bill Murray here? Is this Groundhog day? Waking up every day to the same thing, same routine, same room. Finally on day 14 the neutrophils made one big glorious jump to 118.

Theo, on the other hand, was having a great time. Huh? I know, I was shocked one morning when Theo said to me, “It’s ok if we have to stay here another night, I am having so much fun!” Say whaaaat??? You mean you don’t mind being hooked up to the pole? You don’t mind not leaving this room? You don’t mind being stuck here for days upon days? Amazing but true. Theo was happy as a clam. When you are in the Cancer Care Unit you get a lot of attention. So while I was feeling like putting a lock on the revolving door of our room, Theo was joyfully welcoming each visitor with a great big smile. Eager to show everyone his stuffies, his drawings, and of course, his Spider-Man game. He was thoroughly enjoying the attention he was getting from everyone at the hospital. I completely understand. For a child, what’s not to love about tons of adults feeding you compliments, oohing and aahing over everything you do and laughing at all your jokes? To Theo, everyone is a doctor, someone very important. How refreshing and exciting it is for Theo to be surrounded by and paid attention to by so many people he admires. Finally, someone other than Mama and Papa to talk with and play with! Every night he invited his night nurse to join us in a game of Bingo or Candyland and they often accepted. The next morning Theo would talk about it as if a celebrity had been sitting next to him playing with us the night before. Each day was filled with lots of laughter and fun. Ironically, there was much less time watching cartoons in the hospital than at home. Theo stayed busy drawing on the windows with white board markers, coloring, tons of science and art projects, games upon games, and visits from Child Life, music therapy, and physical therapy. And have I mentioned the food? Oh yes, fortunately, Theo likes the food from the Children’s Hospital kitchen. His meal of choice: chorizo tacos. He was obsessed. So much so that he ate six chorizo tacos every morning for breakfast! That’s right. Chorizo tacos for 14 days in a row! Doesn’t sound too bad after all, does it? Lucky for us, Theo IS fun. He doesn’t just make us laugh, he cracks us up! It is always a joy to be with my sweet silly boy. If Theo is happy, then we are happy. There is no other option than to make the best of every day and enjoy it. It doesn’t matter if we don’t like staying in the hospital. It’s ALL about Theo. He needs us to be there for him. To be positive, to be inspiring, to be brave. If we can’t let go of our own negativity and show Theo the hidden beauty in every situation, than we have failed.

One of the most important lessons we have learned during this journey is to… remember? ASK QUESTIONS. Well, we have done a great job of doing that, maybe even asking too many questions if that’s possible. But there is another lesson to be learned throughout all of this, which is to not get too comfortable. Do not let your guard down. Be on your toes, be alert at all times! I am so used to keeping a log for all of Theo’s meds at home. But when we are staying at the hospital, the nurses are in charge of all of Theo’s meds. They follow the plan and just do what is on the schedule without my help or even knowledge sometimes. Sometimes they tell me what they are doing, to give me a heads up. Also, I like to chat with the nurses to get to know them (and because they are fun to talk to to). It’s important for them to know what Theo likes, what Luis and I prefer, and any other details about Theo and our routines at home that can make the hospital stay more comfortable. Theo was feeling so great this last stay that we didn’t have too many concerns when it came to medicine delivery. It became so easy for me to put on my pajamas, sink into the recliner and enjoy another episode of Schitt’s Creek or another chapter in my book while the nurses did all the medicine work. Well, it came back to bite me in the butt one night. Every night Theo gets a dose of Zofran (anti-nausea med) 45min to one hour prior to Imatinib. He needs it or else he will throw up. One night the nurse came in about 25 minutes after giving the Zofran, ready to give Imatinib. For some patients, 25 to 30 minutes is enough time. Not for Theo. And I wish I could go back to that moment and stop her, tell her to wait 15 more minutes. But I didn’t. Not one minute after the Imatinib was given, Theo was bent over moaning in discomfort. No no no no NO! Yes. He threw up everything, including his NG tube. Ugh, we were having such a great day!!! Then, to my surprise, Theo elected ME to put the tube back in. Really?!? Not the very experienced, sweet, professional nurse? Ok fine. I am flattered, but when this happens it makes me pit out and my blood pressure go up. It’s so dramatic and stressful for Theo, even though he does a great job breathing through it and it works every time. So many tears, so much pep talk, so much emotion (on both ends – I’m just trying to hide mine). Sure enough we had success and afterwards we were both wiped out. Lesson learned.

Covid has put Luis, Theo, and me on an island. Even though we have family and friends offering help and support constantly, we cannot accept it, and so we still feel like we are alone at times like these. I desperately miss my husband. I have been missing him for an entire year. And being separated from the ONE person in this world who knows what I am going through and can make me feel better only makes it harder. It is a struggle, a part of the journey we never anticipated. But I could not imagine going through this with anyone else. One day we will get off the island. For now I will think of brighter days ahead and keep singing the song that one morning got stuck in my head and refuses to leave because it fits my life so perfectly right now. “I’ll be back in the high life again. All the doors I closed one time, will open up again”

“When you’re born to run, it’s so hard to just slow down.” -Steve Winwood, Back in the High Life Again