“To a parent, your child isn’t just a person: your child was a place, a kind of Narnia, a vast eternal place where the present you were living and the past you remembered and the future you longed for all existed at once.” (NG, 2017, p.122)
You may have heard of the book, Little Fires Everywhere, by Celeste NG. (Just about every nurse and doctor in clinic has). For those of you who haven’t, I think this book is worth reading. Recommended to me by a close friend almost one year ago, I had been meaning to read it for some time. When Hulu recently made it an original series, starring Reese Witherspoon and Kerry Washington, I could not delay anymore. An easy and captivating read that became my escape for the past couple of weeks. The book that allowed my mind to travel somewhere else. With every hospital visit came a slight tinge of excitement to read a little more while Theo watched a cartoon or colored while getting Cytarabine. It was an early morning at the hospital during one of these appointments that I turned to page 122 and began to cry. Maybe I was extra tired or maybe I’m just a little more emotional these days. It just felt like that quote had explained exactly how I feel about Theo. Like I had been searching for a way to describe how overwhelming all of this is and then suddenly, there it was. My fear, my anxiety, my worry about Theo. His past, present, and future all swirling around in my head all at once all the time. It is all I think about. It has consumed me like a raging fire. There is no room for anything else.
Delayed Intensification #1 is over. Yes, even Part 2. Next up is Interim Maintenance, then Delayed Intensification #2. Wow, how time flies when your’re… going to the hospital! Because that is exactly what we did. We were there 10 out of 14 days. Part 2 started with a lumbar puncture, aka back poke, of Intrathecal Methotrexate, Theo’s favorite. In fact, he even told one of the nurses before going into the sleepy time room, “I wish I could get a back poke every day.” Theo chooses a new stuffy to join him and Bobo (his monkey stuffy from Mexico who never misses an appointment) each time. Like they’ve just won the lottery. He believes they all deserve a chance to go to the sleepy time room. Yes folks, it’s that good. If you could see the look on Theo’s face as he’s falling asleep. All pain and agony completely erased from his body. Theo is literally floating high in the clouds. The best he has felt in almost one year. No wonder he loves it so much. Part 2 lasts a total of two weeks. Each week starts with a back poke. Cyclophosphamide is given on day two only. Cyclophosphamide can be hard on the kidneys so it’s important that it’s given with a lot of fluids. Theo has to pee a certain volume before fluids can be stopped, making it a seven to eight hour day. Cytarabine is given four days in a row during week one and week two. A drug called Thioguanine is taken orally every night at home along with, you guessed it, Imatinib. Hmmm this all sounds so familiar. Wait, was this the exact same chemotherapy schedule as Induction 1B? YES. Exactly the same, except for the Thioguanine. I searched my memory for those two weeks back in February when Theo received this chemotherapy. Sweet. As I recall, Theo handled it exceptionally well. Nausea was controlled with only two doses of Zofran a day and he had maybe a handful of episodes where he felt brief mild pain in his legs. Easy peasy lemon squeazy. Theo started Part 2 feeling strong, hungry, and energetic. Theo ended Part 2 feeling exhausted, weak, and in a lot of pain. What happened?? Eight months of chemotherapy is what happened! Eight months of getting beat down. Eight months of his bone marrow fighting and working on overdrive. Eight months of his body having to constantly repair itself after being torn up inside. The chemotherapy was the same, but Theo’s body was not.
The past two weeks have been full of surprises. NOT the good kind. Chasing nausea, new skin allergies, piercing headaches, mouth sores, and to top it off, a trip to the ED. The past two weeks have felt like two months. Let me break it down. I’ll start with the nausea. His nausea has definitely changed. No warning, no “feeling icky” creeping up. One minute Theo would be feeling fine, then bam! A moment later he’d be throwing up. Obviously Zofran twice a day did not cut it. So we bumped it up to three times a day. Nope, still not good enough. How about adding Benadryl and Reglan and alternating it with Zofran every four hours? Still not good enough. FINE, Ativan it is. Ativan is a controlled substance; a strong drug we usually try to avoid if possible. But a loopy goofy Theo is much better than a nauseous one. Finally, no more getting sick. It took alternating all three ant-nausea meds every three hours for two weeks straight to keep the nausea under control. And thank goodness we finally figured it out. Theo’s doctor told us that this is very normal. In fact some kids have to be admitted to the hospital to receive IV anti-nausea meds because their nausea is so severe. At least we got to stay at home. This is when I have to tell myself, as bad as we have it… it could be worse.
Then there were the issues of skin allergies. Every time Theo gets accessed (aka getting the “button” on), a dressing, made of a material called tegaderm, is placed over the access site to protect it from germs and keep it clean. At the end of infusion there are two options: Stay accessed or get the button off. Theo prefers getting de-accessed every day. He would rather go through the whole process of getting the cream on, having the site cleaned with chlorhexidine swabs, and then get poked every day than have to sleep with the tubing attached to him every night. By day four of Part 2, Theo had developed a blistering rash next to the access site of his port. He has had redness and irritated looking skin before, usually after having the dressing over his port for many days in a row. It was determined by the nurse and doctor that it was likely an allergic reaction to the tegaderm dressing. Theo also had a bad red rash under the stickers on his cheek that hold his NG tube. Tegaderm allergy? Probably. His skin just decided it has had enough. (Haven’t we all?) So for the next ten days we applied a hydrocortisone cream to the rash and watched it slowly improve until it had finally almost healed. On the morning of day 15 of Part 2, Theo had an appointment. There was no chemotherapy scheduled, just a doctor visit and lab counts. When I applied the cream at 6am, the port site looked only slightly pink in some areas. When the nurse removed the cream in preparation to access Theo, the look on her face told me there was something wrong. The entire area where the cream had been placed was fire engine red! Oh brother, was it an infection?? (That would be a very big problem). No. Thankfully just another allergic reaction to the numbing cream. So now we have a few more names to rattle off when asked, “does your child have any allergies?” Again, it could be worse.
So moving on… another day, another appointment, another day with my little lovie. (Just don’t tell him I said “little”, he really dislikes that). On day ten Theo woke up with a mild headache. It didn’t last long and seemed to only worsen with sudden movements. It happened a few more times that day. Again, we were told it is normal. Things to look out for would be a change in character (ummm… he’s on Ativan so yeah, his “character” is a little OFF), projectile vomiting (well he would be if it weren’t for the anti-nausea meds), and inability to sleep (no trouble sleeping with Benadryl). We could give Tylenol to start but if that didn’t help, Oxycodone would be the next move. By day 12 the headaches were unbearable for Theo. He woke up at 2am crying in pain from the sharp pain in his head. Theo cried, “it feels like a rock is pushing through my head”. Great, finally off the Ativan just in time to start giving Oxycodone. Theo’s eyes were just beginning to look normal again. What I mean is, his pupils were not dialated, the gloss was fading, and his head was no longer in the clouds. But hey, you can’t mess with pain like this. Hazy eyes or not, Theo needed the Oxycodone. When the mouth sores arrived by day 15, it just gave us even more reason to keep him on it. It’s amazing how fast it works. You can see his entire body change. Physically and mentally. My days with Theo on Ativan and Oxycodine have been like being with a drunk five year old or Jekyll and Hyde. Sobbing uncontrollably for no reason one minute to being the silliest love bug the next. This little human with us was terrifying (yet hilarious at times). When you have a five year going through cancer treatment on controlled substances, nothing makes sense and there’s NO reasoning with him. Rules? What rules?!? Out the window. Seriously. All of our “rules” we have made for Theo over the years: not too much tv or video games, set bed times, eating at the table, not wasting food, etc. It doesn’t exist. Want me to tell you how many hours a day he plays his favorite Spider-Man video game? A LOT. And he loves it. The ONLY thing that matters these days: is he in pain? No? Okay then, play away my love… play away.
Don’t worry, I haven’t forgotten about our trip to the Emergency Department (ED). Here we go again. It could have been worse. Why? Let me tell you. Theo spiked a fever on a Friday, day 11 at 8pm of 101.2 degrees Fahrenheit. Cytarabine, the likely culprit, can cause flu like symptoms: fever, body aches, headaches. Theo had been in what we call the gray zone all day. That means his temperature was not high enough to go to the ED, but high enough that we could not give Tylenol and had to recheck his temperature every 30 minutes to one hour. But when it finally spiked we had no choice but to rush to the ED. Bags packed and ready to check into hotel Children’s. Theo’s neutrophils were 2,020 earlier that day so at least we knew infection was unlikely. The doctors looked for any other obvious signs of infection and found none. The blood sample that was taken (from the painful experience of getting accessed by a nurse who seemed to still be in training) showed no bacteria growth. Besides the fever, Theo looked good. An extremely unpleasant visit as always but we got to go home! Sure, it was 2am by the time we left, which, wouldn’t have been that bad except we had to be back in clinic the next morning at 8am for Theo to have a blood transfusion. It was a rough night. Nothing more, nothing less. It could have been worse.
When Theo was first diagnosed, we knew that he would need full time care. Being Theo’s nurse is my new full time job. When you spend every… waking… moment… with your sick and needy child, during a pandemic, isolated in a bubble, it will swallow you up whole and land you in the belly of a whale. And when I say needy, I mean it times one million! When we are not at the hospital, we are in our little bubble, aka the bedroom. Leaving the bedroom requires Theo’s approval, like asking for a hall pass. If I’m gone too long (more than five minutes) I hear him calling for me. But can I blame him? He doesn’t feel good! He has NO ONE else besides his mama and papa to be with and play with! WE are his everything. I can’t believe I used to be away from him ten hours every weekday. I never dreamed I would be so lucky to be able to spend this much time with our boy, our everything, especially at such a fun sweet age. But I want my Theo back. I want the Theo who I get to go swimming with. The Theo that loves to and is able to eat good food. The Theo who instead of getting excited for the sleepy time room, can be excited for a trip to the zoo. The Theo who isn’t always having to deal with pain and learning about his emotions at the same time. I know we will get out of this one. I know one day Theo will be too busy with friends and I will be begging for endless snuggles and Theo’s calls for me to be near. I know one day Luis and I will have more than five minutes to ourselves to talk to each other about things other than Theo… and listen. But for now, this is our Narnia, our journey. We will wake up to another day in the whale’s belly, holding on to every laugh and every snuggle with our baby boy before we get released back into the deep wild ocean.
“Things never happen the same way twice, dear one.” – C. S. Lewis, Chronicles of Narnia