I have been staring at a blank screen now for almost 20 minutes. All of this: the virus, staying inside, nation wide shut down, escalating deaths around the world, a pandemic… it has been so hard to process. As the days go by it only gets harder. You see, I’ve always been a “go with the flow” and “stay positive” kind of person. At least I make it appear so on the outside. If I am having a hard time, worried, or frustrated, I do not like to show it. Especially for Theo these days, I try to keep up a positive attitude and appearance. Everything will be ok. But the truth is, I don’t know. No one knows. What I do know is how to help myself feel better. So this morning when I woke up feeling unmotivated, unsettled, stuck – like I wasn’t going anywhere (mentally and physically)… I decided to write. It helps me organize my thoughts and face up to my feelings. Like I said, no one knows what is going to happen. THIS IS SCARY. I have never been so scared of Theo getting sick. A couple of weeks ago, I received a phone call from Children’s Hospital informing me that on Wednesday, March 18th, Theo and I were exposed to an individual who tested positive for Covid-19 in the Hemotology/Oncology clinic. Oh great. Breath, stay positive. It’s not like Theo can stop going to the hopsital for treatment, so what’s the alternative? His doctor told us back in January, it wasn’t a matter of IF he would get sick and therefore need to stay in the hospital, but WHEN it would happen. Well, we are doing everything we can to make sure that WHEN is not NOW. As if there wasn’t enough to worry about before this dang virus. As is we aren’t already freaking out about every germ, every surface touched, every person we come close to, and washing our hands 100 times a day. To be honest, our lives haven’t changed all that much. With Theo’s immune system being so compromised most of the time we never go out to crowded public places, we wash our hands like crazy, clean and do laundry like we’re Cinderella, and we keep people away. The difference now is just how much more we stress about it. It is exhausting. But hey, I must say this writing thing is working. I’m feeling better already, more clear and productive. I hope you have a way to cope with all of this going on. Please share your thoughts with me if you wish.
And now we break for a poem. Written on another day I was feeling “stuck”, laying next to Theo while he napped.
The fuzzy hair on your head tickles my chin. Every time you exhale I feel your warm breathe on my skin. You are curled up beside me snuggling me tight. I could stay here all day and all through the night. The window is open to let in a fresh spring breeze. The birds are joyfully chirping outside in the trees. Let our worries travel far away from here. As we rest our bodies and minds we’ll keep our happy thoughts near. I’ll dream of sunny days with papa and you. Playing at the park under skies so blue. My champion, my super hero, my sweet silly boy. I love you forever, you bring me so much joy.
Back to business. Oh no, not another confusing chart! It looks more complicated than it actually is. The chart shown above is the treatment plan for medications to be given during induction part 1B, which Theo just completed. Every time he enters a new phase of treatment we get a new chart to show us the schedule of which drugs are used and when. I am happy to report that Theo cruised through part 1B like a pro. What?? Say that again!! I am happy to report that Theo cruised through part 1B like a pro. He can even pronounce all the names of the medications perfectly. “Mama, am I getting Cytarabine or Cyclophosphomide today?” Everyone, including his doctors, were amazed to see him doing so well. If it wasn’t for the hair loss you could hardly tell he was getting chemotherapy. The only other sign of sickness was his cough. He had a cough that lasted a good two months, but the doctors agreed that it would go away after some time. He started taking an albuterol inhaler to help loosen up the junk in his lungs. After each dose he would cough violently to the point of puking for sometimes up to an hour. Chest xrays showed progress so we knew we just needed to be patient and we slowly, very slowly saw the cough improve. Theo was also swabbed for Covid-19. Drum roll… it came back negative. Relief! Through part 1B, Theo was (and currently is) happy and feeling good despite the cough. His energy level has been up, silly, playing, and back to fighting bad guys! He has not been eating two plates of spaghetti, but at least he still has an appetite, which means no feeding tube. I was a bit worried when Theo was prescribed three different anti-nausea medications, but fortunately he only needed the minimum daily amount of one medicine, that he was already taking.
Treatment during part 1B got put on hold for one week due to a low Absolute Neutrophil Count (ANC), but we were told that is common. Other than that one week off, our schedule was pretty busy. We were at the hospital most days of the week, some days for as long as 7 hours. Most of the time for chemotherapy and other times for blood or platelets. But seriously, where else are we going to go? What else are we going to do? All the staff at Children’s Hospital is so wonderful and friendly we actually enjoy seeing them. It’s like our social time with the outside world. We just met with one of Theo’s lovely doctors. I am almost sad when the appointment is over, she is so fun to talk to. She gave us some good news: Theo’s lungs are clear and he no longer needs the albuterol inhaler! Also, several weeks ago, we met with a genetics specialist to have some testing done. There is a genetic chromosome change that is linked to having kidney dysfunction. Theo has this specific change, the question is – is it genetic or from the leukemia? Testing revealed that the change happened as a result of the leukemia. So Theo is not likely going to have any kidney problems or dysfuction in the future. Just think, that in maybe the next ten years, doctors will have the ability to know how each patient will respond to drug therapy based on their genetics. We will know what illnesses we are predisposed to based on our genetics and how to treat them accordingly and so much more! It simply blows my mind away.
I never realized how many battles there would be to fight in this journey. I naturally thought of just the one big FIGHT AGAINST CANCER. But what about all the other hidden booby traps and road blocks that we encounter along the way? Each win is such a huge victory. Keep it coming. Keep putting out those good vibes everyone. The world needs it now more than ever.
“Hope is the thing with feathers, that perches in the soul, and sings the tune without the words, and never stops at all” -Emily Dickinson