When I grow up I want to be a…
Go on, complete the sentence. What do you want to be when you grow up? Already a grown up? Well then, when you were kid, what did you want to be when you grew up? Take some time if you’d like to think about it. Really think about it. No matter your age, no matter your current occupation, no matter your situation. Remove the past and go back to the time as a kid when you felt excited to be that something. Perhaps you ARE that something you always dreamed of being. Or maybe you are on your way there. Of course our goals and dreams may change as we age and mature. Or we discover new passions along the way. Maybe you followed the steps to a more “practical” job, an easier faster way to make money. Maybe the realities of being an adult, having a family and a mortgage to pay changed your priorities and need for stability. Maybe what you want to be is not a job at all, but a way of living, an idea, a feeling. As a child, everything is so simple. Black and white. Right and wrong. Good guys and bad guys. Untainted by the harsh realities of such things like peer pressure, deadlines, power, politics, and war. A child’s innocence is so beautiful and delicate. Never lasting as long as we hope it will. Life happens. But we never stop learning, exploring, and experiencing. Theo will tell you today that he wants to be an exploring chef. Travelling to far and distant places to find ingredients for his famous recipes. The excitement he has when Luis (our chef) starts cooking a meal is incredible. Always ready to add spices and herbs. Whether his body is capable of eating or not, his mind is ready to create delicious food. Will it last? I hope so. But it’s not the what that matters. It is the who. What he wants to be might change several times throughout his life. Who he wants to be is forever in his heart…. a creative, sensitive, loving human.
Welcome to Interim Maintenance. In this phase you will see smiles, laughter, and beautiful scenery. Enjoy the ride. No, this is not a joke. We were told this is the easiest phase of treatment. At first Luis and I believed the doctors, but then after going through everything that’s happened, we weren’t so sure anymore. We were expecting the unexpected. Well, we are two weeks into this phase and to tell you the truth, this has been the most “normal” life has felt since Theo was first diagnosed. (Also because we are so used to the routine of medicines and dealing with the NG tube by now.) If it weren’t for the NG tube you would not even notice that Theo has leukemia. His energy is through the roof. His hair is growing back (yes, even those long eyelashes) and he started online kindergarten. Interim Maintenance lasts four weeks total. There are three medications, all taken orally. Every night he takes Imatinib (nothing new) and Mercaptipurine, his favorite. Mercaptipurine is the ONLY medicine he actually enjoys tasting. He prefers to drink it instead of us putting it through his NG tube. Every Tuesday he gets six pills of oral Methotrexate. This is the only medicine that has the potential to cause some nausea. So far, so good. The only down side? No back pokes in this phase! Theo asks every day, “how many more days until I get a back poke?” So while we are loving and soaking up every second of this phase, Theo is counting down the days until Delayed Intensification #2. Oh please, not yet!
The other common question we get asked by Theo these days: “When will I be in Maintenance?” Hmmm… that’s a great question! A few months ago, by my calculations, I would have told you that Theo would be in Maintenance by December. However, treatment has been delayed four weeks in the last couple of months. It was delayed two weeks after Delayed Intensification Part 1. It was delayed another two weeks after Delayed Intensification Part 2. Luis and I were shocked that we had to wait two weeks to start Interim Maintenance! Theo’s bone marrow is getting very tired. I couldn’t believe his numbers were so low. In those two weeks being delayed, Theo needed one blood transfusion and two platelet transfusions. He may have been feeling good, but his bone marrow was dog sick and wiped out. His platelets were so low before his first transfusion that even after receiving platelets, his port access site would not stop bleeding! On the car ride home, Theo complained of being hot and sweaty, saying his shirt was even wet with sweat. When I unbuckled him I noticed the belt was wet. I thought, gee he really is sweaty. Nope! The blood had soaked through his clothes, even down to his pants. About six more gauze replacements with some added pressure on top finally made it stop. Had he gone through one more gauze he would’ve had to go back to the hospital for another transfusion. So, to answer the question, when is Maintenance? I have no clue. Theo has Delayed Intensification #2 after Interim Maintenance, which means, more delays. Especially with Theo’s bone marrow being so fatigued. But we won’t think about that right now. Let’s just focus on this phase. This time, this day, this moment.
Like I said, life feels “normal” or as normal as it can be during a pandemic. We actually leave the house now! I know, it’s really something. Going places other than the hospital is very exciting. And not just for a quick around-the-block stroll. I’m talking actual adventures. Theo used to only be able to handle about 30 minutes in the car before he started to feel sick. If he went outside to play he would crash after only 15-20 minutes then spend the rest of the day in bed. Now, a two hour drive doesn’t phase him and he has energy to keep going all day! Theo is also doing online school. Quite the opposite from his ten hour days in preschool with friends, but at least he is excited to be in kindergarten and is an avid learner. His school is 100% online with Monday zoom meetings with his class. School lessons and having a routine is important, but so is getting outside to have fun. So if school work is done at 4:30pm instead of 10am because we decided to go on an adventure… who cares?! We are taking full advantage of these feel good days. Going to the beach, the mountains, hiking (kid friendly), and lots of sports outside. That means he is back to riding his bike and playing just about every sport he possibly can while the sun is up. Oh no, it’s raining? No problem. Uh oh, hail? Even better. Theo is unstoppable these days. The bigger the puddle to jump in, the better. Luis has a ton of “secret” places to find treasure. So we took a drive one day heading east on I-90 and stopped at Lake Keechelus to go exploring. The water level is so low this time of year that you can walk for hundreds of yards along the rocky sandy muddy floor. Theo was like a child on Christmas morning. His eyes open wide in amazement and wonder. I swear you could see the wheels in his head spinning in overdrive. It was the best day, finding cool rocks, getting our boots stuck in mud, throwing sand (mostly in Luis’s ear), making bridges out of rocks and sticks to cross creaks too deep to step in, and hardly a person in sight. Oh… did I mention the beautiful sunny warm weather? Let the good times roll.
Theo has grown a tremendous amount, mentally and physically, through all of this. I hardly recognize him from pictures taken last year. Who is this big boy talking to me about the king of Sparta, Leonidas? I’m amazed how he remembers the names of all the historical figures from the stories Luis tells him. My stories are always an absurdly comical tale of talking animals or some silly event. Luis is the master of real story telling. He doesn’t just tell a story, he makes magic happen. Eager to share his love of history with Theo. So alike, those two. Sometimes Theo seems so adult like. He will start talking to any person about his cancer, totally out of the blue. The lady in the coffee shop, the woman walking her dog down our street, the comcast guy… he has told all of them his story. He tells them what his NG tube is and why he has it, what medicine tastes the yuckiest, what a port is and how he gets his “button” on for chemotherapy and sometimes blood or platelets. He talks to adults (relatives and complete strangers) with such ease. I suppose, that when the only other people you spend time with outside your family are adults, that is bound to happen. His interaction with other kids is next to nothing. For as strange and different school is these days, at least he gets to see other kids through his class zoom meetings. He calls them his friends even though they have never met. I don’t know when or if he will get to meet them. Fortunately, he has a handful of close, loving, wonderful friends that he gets to see from a distance or have video chats with every now and then. Each time he connects with a friend it makes the light in his world shine a little brighter. Every prayer, thought, and message we receive from friends and family makes our world shine a little brighter, too. So thank you, all of you, for your gifts, thoughtfulness, and prayers.
The very first week Theo was in the hospital was all a blur. We met so many doctors and were fed so much information while trying to cope and process such devastating news. Like we were given a crash course in how to be pilots, expected to fly a plane without ever being in the cockpit. It feels like it’s been years since this all started. The hospital visits, the NG tube, getting admitted, taking new medicines, managing the side effects, etc. It all seems so routine now. The very first night, when a doctor told us that Theo had leukemia, I completely lost it. With a waterfall of tears, I covered my face and told her, “I can’t do this”. She hugged me so tight and said, “YES you can, you HAVE to”. That has stuck with me ever since and I will never forget it. When I look back at the hardest days I feel proud. Proud of Theo, for his courage and optimism. Proud of my husband, for never letting us drown. Proud of myself, because I AM DOING THIS. This much needed break from intense chemotherapy and hospital visits has us moving forward with our heads raised a little higher, our spirits fuller, and a hearts stronger. We are ready for the journey to continue. Though we’ve come this far, I know we still have miles to go. The finish line is not yet in site but it’s reassuring to know we are capable and strong enough to handle anything that comes our way. To infinity… and beyond!
“It takes courage to grow up and become who you really are.” -E. E. Cummings