“Autumn leaves don’t fall; they fly. They take their time to wander on this, their only chance to soar.” (Owens, 2018, p.124)
This past year has been the most difficult and challenging year for me as mother, a wife, and a human being. Never in my life has it been so hard to stay positive. As a mother, it is my job to set a good example. To not only teach but show my child what kindness and respect mean. To help my child understand and process his emotions. The last thing I want is for Theo to see me having a raging fit. Or for him to witness an ugly argument between Luis and me. But… it happens, right? Of course it’s not ok. It breaks my heart. Theo looks up to Luis and me, looks to us for how to feel and act in times of stress. And oh boy, this has been a year of STRESS. Theo must have a wise old soul like Luis, because he always seems to know the right thing to say at the right time. He pats me on the shoulder and tells me “It’s ok Mama, just take a deep breath.” As for Luis? Like I said: old soul. He is constantly reminding me to not hold in my frustrations, to communicate daily, effectively and kindly. Yes, I am the “huera loca” (crazy blond) and I am deeply loved. Well, it wasn’t easy, but we made it through the first year. The hardest part of treatment and the most intense therapy Theo will have to endure is over. After this very grim and frightful year I am hopeful and looking towards a bright future. It is time to leave the darkness behind me and breath. After all… Theo is not falling. He never was. Theo, like the autumn leaves, is flying.
One word: MAITENANCE. It is just around the corner! Theo is sooooo close we can smell it. Like a pie baking in the oven, waiting for the last few minutes to turn the crust golden brown. We are presently waiting for Theo to start Maintenance. We were expecting that he would start today, January 19th, but unfortunately, his platelets are still too low. He has already received one blood transfusion and two platelet transfusions since the end of Delayed Intensification #2. His legs are covered with bruises that refuse to heal and if he gets a cut it takes a long time for the bleeding to stop. I thought for sure a third transfusion of platelets was in his near future. His platelets are really struggling this time, but slowly and surely they will rise. This marks his third week of delayed therapy. He was scheduled to start on January 5th but his numbers were not high enough. Fortunately his ANC is well above 700 so at least his immune system is getting stronger. Being delayed one more week is not upsetting. It just means another week to rest and recover. On the down side, he got denied from going to the sleepy room after not eating all day. But it also means he gets one week off from taking Imatinib!! That is a big win for Theo. Either way, he will be there soon enough, likely next week. It felt like ages ago the doctors in the ICU spoke of this mysterious yet magical phase. Like it was some far off land that belonged in a fairytale. It’s not the finish line, but at least there are fewer hills from what we can see. Maintenance is the longest of all of the phases. It is typically when patients start to feel better, have less intense chemotherapy, and have a strong enough immune system to even return to school. Basically, life returns to almost normal. If it weren’t for Covid, Theo would be going back to school and to all his favorite places, like the aquarium.
Remember Interim Maintenance? It was the easy phase before Delayed Intensification #2. Well, guess what? Maintenance is almost exactly the same! He takes all of his chemotherapy at home, orally. He will continue to take Imatinib daily, as well as Mercaptopurine. Oral Methotrexate is taken once a week. Every six weeks he will get a back poke of Intathecal Methotrexate for a total of six doses, which Theo is obviously excited about. Maintenance is divided into four cycles, each course lasting three months. The only change happens in the fourth cycle, when Theo does not get any back pokes. Otherwise there are no changes in his medications. Last but not least is Bactrim – not listed on the therapy delivery map. Taken since day one, it is an antibiotic taken every Monday and Tuesday for the duration of his treatment and three months following the end of therapy to prevent pneumocystis pneumonia. Now to answer the burning question: how long does Maintenance last?????
When Theo was first diagnosed with leukemia, we were told that Maintenance phase usually lasts two to three years, sometimes longer for boys. We were shocked. Then Theo had to start taking Imatinib and we thought, “You mean he has to take this every day for the next three years, maybe longer?!” Well, I have good – no, AMAZING news. Maintenance phase for Theo will only last ONE YEAR. That’s right. How awesome is that? Also, because he will not need any IV chemotherapy, he can have his port removed!! I know, it just keeps getting better. During a provider visit on the Tuesday before Christmas, Theo’s doctor delivered all of this wonderful news to me. I was so happy I wanted to pick her up and give her the biggest bear hug. Hearing that was the best Christmas gift I could have possibly been given. ONE MORE YEAR. I couldn’t believe it. Why so much shorter than expected? In a nutshell, Theo got the shorter but more intense straw. Theo has had longer and more intense therapy than patients with the more common types of leukemia, therefore his Maintenance is shorter. Patients with the more common types of leukemia, in general have less intense therapy so Maintenance for them does last as long as two to three years.
That wasn’t the only reason to celebrate. Best thing of all, Theo was home for Christmas. We did not have to celebrate the holidays in the Cancer Care Unit! In the last week of Delayed Intensification #2 Part 2, Luis and I were definitely on edge. Anxious that at any moment a fever would spike, we checked Theo’s temperature more often than usual, feeling our hearts race ever time we heard the thermometer beep with a reading. There were a couple of days that last week when his temperature jumped into the “recheck” zone, but luckily never went higher. He did get some headaches but nothing Tylenol couldn’t handle. What a relief, he did not need any oxycodone. Sudden movements and sitting up out of bed brought on the headaches so he was not very active at all. The most activity he had was going to the hospital for appointments, some of which he slept through entirely! Leaving the bed to do anything other than go to the bathroom was rare. He even chose to stay in bed “just a little longer” on Christmas morning even though we tried to excite him with the news of Santa’s recent visit and presents under the tree. He finally found some energy to go open his presents and flash us his beautiful smile. Theo showing us the true meaning of holiday cheer.
The last day of Delayed Intensification #2 Part 2 was on Saturday, December 26th, 2020. By then Theo was no longer eating enough on his own so I dusted off the old feeding pump and hooked him up again. We were truly amazed at how well Theo had been eating. We were expecting his appetite to disappear long before it did, but he continued to prove us wrong. No new food cravings this time. Theo had been eating healthy size portions with a preference for bland. Favorites were, and continue to be salty popcorn and plain white rice. His holiday meal of choice was a giant bowl of mashed potatoes with salt and butter. At first we used the feeding pump as a way to supplement his nutrition. The rule is, if he eats more than 50% of a meal we skip the pump. If he eats less that 50% of a meal then he gets one 250ml carton of pediatric formula through the pump. Eventually, Theo stopped eating completely, but only for about one week. I was mentally prepared for Theo to be needing the feeding pump for weeks, even months, and therefore thankful that we were stacked with plenty of supplies. Surprise!! It wasn’t even two weeks later that Theo was back to eating again! By January 9th, Theo was off the feeding pump completely. Still eating popcorn almost daily… but done with the pump.
Presently, Theo is feeling GREAT. He is what you would expect a five year old boy to be. Full of energy, crazy, chatty, silly, and sweet as pie. It has taken three weeks, one blood transfusion and two platelet transfusions to recover from his last round of chemotherapy. Luis and I forgot (again) what it’s like to have a wild five year old. After months of Theo having low energy and barely getting out of bed, we had adjusted to a new level of “feeling good”. Our expectations had changed. Now, seeing him run, play, and dance, it’s like watching an alien. Who is this kid? Oh wow, it’s been Theo all along, he just hasn’t been feeling good or feeling like himself! What a difference. Theo has bounced back again. Sometimes we worry about the amount of time he has spent this past year watching cartoons and playing video games. Fortunately, Theo is so bored of cartoons! His desire to go outside and play is burning. I can’t blame him. After being cooped up inside for so many months it must feel so good to just be outside and play, dig, explore, and get dirty! He is back to scooting, biking, and his new favorite: baseball. This kid can hit. The louder the “boom” the bigger his smile. He bats left handed and throws the ball right back to the target. Some days we will spend hours outside hitting and throwing the ball. There are so many sports, activities, and musical instruments he has yet to try. I can’t wait to see what inspires him, what will bring light to his world. His NG tube is even out as of one week ago (January 13th)!!!!! He was so happy when it came out and I said it didn’t have to go back in… ever. He proudly announced that he is ready to go back to taking his pills because he is a “big boy”. His first night taking Imatinib pills he asked, “Why are the pills so small? Is it because I grew so much?” I can only imagine, Theo, like in Alice in Wonderland, growing to the size of a house after eating a mysterious mushroom, looking down at his teeny tiny pills. Well, he did it. The pills went down easy peasy, with Luis by his side. I don’t know how Luis does it. With me, it will take Theo 30 minutes to get his medicine down. So many delays, excuses, and interruptions. With Luis it’s done in one minute. Luis is so good at that. Cut the nonsense, let’s get this over with. Theo is so proud of himself, as he should be. He has been knocked down and beat up so many times. No more. Our Theo is here to stay.
During our many long hospital visits and lazy days at home in bed, I found time to read yet another wonderful book (and some other not so great ones). My new favorite, Where The Crawdags Sing, by Delia Owens, had me lost in time and space. When I read the above opening quote, it was like a window opened and sunlight came through. I saw beautiful radiant colors and immediately felt happy. That is how I feel every time I see Theo smile.
“It’s hard to beat a person who never gives up.” – Babe Ruth