Seasons change. The days are now shorter, the nights are cooler. The sun barely shines over the tallest trees. No more sandals, no more long lines at the ice cream shops, no more late nights swimming in the lake. Our iced lattes have been replaced with hot pumpkin spiced lattes. Summer BBQ’s have been replaced with fall night fires. No longer worried about mosquitos outside because now we have spiders inside. Hot summer days are in the past as we embrace the radiant changing colors of fall and look forward to winter days ahead, playing in the snow. I can smell it, touch it, even taste the difference in the world changing around me. Evolving, adapting, spinning around me. Like the seasons change, so does our journey. Moving onward to the next phase. Discovering and learning about ourselves in ways we have not yet seen. Ready and waiting to see where the wind blows. The cold is running deep into my bones and the darkness is closing in. It is time. The season of Theo has changed.
If each phase of treatment was a season, then Interim Maintenance was my summer. A summer filled with blue skies, warm weather, and endless outdoor adventures. For the first time in nine months life seemed “normal”. Theo was almost himself again. I had forgotten how much energy a five year old can have. How carefree and daring young kids can be. His independence and confidence returned in full force, allowing him to take more risks and do more on his own. My first reaction was to be overprotective and overly cautious. I’m so used to watching his every move, helping him get in and out of the car, waiting for something to hurt or a fever to appear. Is he nauseous? Is he in pain? Is his ear bothering him? Is he pooping ok? Oh no, why is he so tired all of a sudden? Am I going crazy?!?! Sometimes I feel like I’m caring for a fragile glass egg, which at any moment could crack or break from it’s surrounding environment. It took some time, but eventually I was able to let go of that anxiety and just enjoy Theo being… well, Theo! I can’t wait to get back to that again.
Welcome… or should I say, welcome back to Delayed Intensification Part 1… #2! Sound familiar? It should. Yes, we have been here before. If you don’t remember, it’s ok. You can easily scroll down to my blog entry titled, Food Fight, if you want the gritty details. Not that I expect everything to be the same. I’m no fool! I learned my lesson after we finished this phase the first time, remember? In my blog entry titled, Dazed and Confused, I ended with the quote, “Things never happen the same way twice, dear one” by C. S. Lewis, Chronicles of Narnia. So honestly, this is like any other new phase of treatment. We will take it one day at a time, preparing ourselves the best we can. Using what we learned from previous experiences but not assuming or trying to predict what will happen. Theo has endured ten long hard months of chemotherapy. Sure, the drugs and schedule are the same but Theo’s body is not.
Which is worse? Knowing what is to come? OR Not knowing anything at all? I don’t know, but what I can tell you is that I am very much dreading this phase of treatment. Theo ended up with a serious ear infection and fever that got him admitted to the Cancer Care Unit for ten days the last time he went through this. It’s not the hospital stay that worries me. It is WHAT will cause the hospital stay that is my concern. I worry about his susceptibility to infections and how bad they can get. The long term effects and how he will recover. Staying in the hospital is not a problem… as long as Theo is in no REAL danger.
This is Delayed Intensification Part 1. Do you see what I see? (IT MTX means back poke) Theo jumping out of his skin with excitement to go to the sleepy time room! After at least one month of Theo asking me daily, “when is my next back poke?” I was finally able to tell him it was time. And oh boy was it amazing. Theo interviewed each one of his stuffies to see who would be the lucky winner and join him (and Bobo of course). Each time Theo gets sleepy milk his reaction becomes more and more dramatic. His eyes roll a little longer, his voice quivers louder, and he smiles bigger. Like he has to show us just HOW much he really loves it. It is so sweet. I know it is the best he has felt in a long time and so I am happy he can enjoy even five seconds of that floating on clouds good feeling. The following four weeks of Part 1 consist of IV chemotherapy in the infusion clinic every Tuesday. Theo will thankfully receive his last dose of PEG on week two. Remember, this is the dreadful medication that nearly one third of patients have a serious bad reaction to. Theo, so far, has handled it without any problems. Vincristine, the drug that makes hair fall out, is also making its last debut on those four Tuesdays. Theo, who finally and happily has his hair and beautiful long lashes back, might be saying good-bye to them one more time. Doxorubicin, that sneaky devil, is also in the schedule on Tuesdays. The culprit for nausea and making Theo’s blood counts plummet to nearly ZERO towards the end. Throw into the mix a couple weeks of steroids and there you have it folks. Buckle your seat belts, it could be a bumpy ride.
Knock knock. Who’s there? Steroids… No not again!! Ugh….. what can I say that I haven’t already said before? There are two steroid pulses in this phase: steroids twice a day for one week, then one week off, then twice a day again for one more week. It is NOT fun. Theo is NOT Theo. He is someone else with a completely different personality. Within hours of taking his first dose of steroids, Theo changes. Like someone flips a switch and suddenly Theo is gone. This time he has turned into this serious, adult like, extremely sensitive person. The other night I was so excited to tell him a story that I thought was sure to make his belly ache from laughter. So I was shocked when I was the only one laughing. I felt like a comedian on stage telling a joke, waiting for the audience to react. All I got was silence. “Tap tap. Is this microphone on?” Theo often seems to be lost in thought. After dinner one night he said with concern, “I’m really trying to think about what I’m going to do. But I just don’t know.” Such a strange thing to hear coming from Theo, who usually knows exactly what he wants. Searching for a silver lining, I realize that getting through his kindergarten lessons the past two weeks has been super smooth and easy. We have far fewer interruptions and distractions due to his lack of wiggles, silliness, and jokes. But I’ll be honest. I prefer the wiggly silly Theo MUCH more. Physically he has slowed down significantly. He does not have much desire to leave the bedroom (or his bed). He is still stronger than ever (with the exception of some shaky hands, again, steroid related). However, his preference these days is to “chill” in bed, draw, and of course, do puzzles verses bouncing, running, and battling like he’s known to do. In fact, Theo puts himself to bed these days, earlier than expected. Hey, with this gloomy weather? We are happy to go to bed early with him!
Nausea is never an easy one to predict. So we are following the plan that we used last time of anti-nausea meds every four hours for three days following chemotherapy on Tuesdays. So far so good. Nutritionally speaking… it’s a struggle, but at least he is eating. It is so utterly frustrating to not be able to help someone when it is all you want to do. To watch them stress and worry without any kind of hope for a solution. Especially when that stress is about food. Theo is incapable of making a decision. It is bizarre. He is upset and hungry (aka hangry) and the ONLY thing that will make him feel better is to eat some “delicious food”. Go ahead, name every possible food item you can think of. Seriously. Pizza? Calamari? His beloved enchiladas? How about ramen with toasties? The answer is NO. Popcorn? Wait a minute… did you just say popcorn?!?! Hold on folks, I think we’re on to something. POPCORN for the win! Finally, something Theo decided to eat, to enjoy, to be happy about! Popcorn for breakfast, lunch and dinner. Beyond the popcorn, every day is a bit different, a bit of a guessing game. Maybe he’ll eat a lot, maybe he’ll surprise us with a new food craving. Who knows!! He suddenly started asking for bananas with Nutella, sometimes eating two or three of them in one day! Theo has been eating other foods, too of course. Food that Papa makes because he is the master chef that creates the BEST food (Theo’s words and I agree 100%). If Luis makes pasta, Theo is eating pasta. If Luis makes soup, Theo is eating soup. Luis makes food magical. He knows what to do, what to make. Theo won’t always admit it right away. He might say, “I’m just not hungry for that right now”. But give him a minute. Let Theo watch Luis cook, help add some spices, smell the food, and I guarantee you, he’ll be gobbling it up in seconds. Mis amores y mis cocineros.
Being Theo’s mother, nurse, teacher, and friend is so overwhelming, suffocating, and stressful. But so is being his father. I crave time away from Theo. He is stuck to me like glue. Luis craves time with him. Like me, Luis wants to be wanted, to be snuggled, to be admired. He wants time with Theo as a loved, appreciated father, not as a servant. Unfortunately, being a servant for Theo is the reality for Luis these days because that is how Theo treats Luis. I know that one day when this is over and Theo is older, Theo will gravitate more towards Luis and they will have more special time together without me. I know it. Theo will want to spend more time with Papa and I will be jealous. I know that one day we will have time to go on adventures, to eat at the dinner table as a family, to go on a vacation!! Luis and I will have time as husband and wife. Imagine that, like a real couple! To be able to sleep in our own bed without Theo (yup, that’s right. Theo sleeps in our bed every night). I know that one day we will have time to be a family again. But right now, Theo has to be with me while Luis works full time. Thankfully Luis is working his butt off to provide the income our family needs. I never imagined that I would be able to spend this much precious time with my little lovie. It is devastating that the reason is because he has cancer but I’m grateful for the special time we have together. I do and will always cherish these days. I have said this so many times (at every age probably) but I wish I could freeze him! Five is such a fun age. I love him so much I just want to squeeze him tight and never let go.
I often think of the days when Theo was just a baby. Smothering him with kisses as he squealed and laughed in my arms. His body glued to mine in the baby carrier for hours on end throughout the day. Sleeping with him on my chest in the morning. He LOVED IT. But, I loved it more. There was a time when changing his diaper meant endless giggles and tickles on the changing table. I knew my time of kisses, snuggles and sweetness would not last forever. So when I give Theo a hug, I hold on a little longer, squeeze a little tighter, and sneak in as many gentle head kisses as I can before he pushes me away and wipes the “kissy marks” off his head. When I asked my mom, “when does it end?” she told me my brother was about six years old when he stopped wanting kisses. Well… that time has come even earlier for me. At five years old, I am already getting shut down HARD to share my affection. I now have to negotiate for a hug or kiss with Theo. My amazing parents, mother and father of three, have my heart and permission for hugs and kisses whenever they please.
“To appreciate the beauty of a snowflake, it is necessary to stand out in the cold.” – Aristotle