A wise and wonderful friend of mine recently gave me a very inspiring and heart warming birthday gift. The reminder that I have so much to celebrate. To think of where I am today compared to last year at this time. It is so true. There has been so much change, so much worry and stress, that most days I forget to appreciate how much happier life is today. It was a beautiful reminder to stop and think about how far along this journey my family and I have come. To remind myself that while change can be painful and exhausting, it can also be marvelous and truly rewarding. Our world is changing every second. We don’t always feel it, we don’t always see it. But we know that every day is a new day and unlike any other. I catch myself more often staring at Theo in awe. Trying to record his movements and expressions in my memory so I never forget his pureness. I want to remember him at every stage of growth before he changes again. When did he get so big? Funny how that question never gets old. You notice that? As a kid, I heard it all the time. “Wow, look how much you’ve grown!” “Well, duh”, I thought. Of course, kids get bigger! People don’t stop growing or changing just because you don’t see them! Now, as an adult, I catch myself saying it all the time. No matter how silly or predictable it sounds, that question comes flying out of my mouth before I have the chance to hold back and recover with a more witty, unique observation of my friend’s fast growing daughter. But really… when did Theo get SO BIG?!?!
On Tuesday, March 16th, Theo got his back poke, hooray! His lungs were crystal clear. The cough was almost gone. He was still clearing his throat quite a bit, especially in the morning. His doctor told us that he should continue Cetirizine daily until the end of summer. There may likely be an allergy component to his cough, which is why it was lingering, and the allergy medicine would help with that. The Albuterol was no longer necessary since his lungs were clear. His blood counts had also recovered so he was instructed to start all oral chemotherapy again. Theo’s immune system had made a comeback! Wait… what’s this? An ear infection in his left ear?? Oh brother. Well good thing his doctor caught it early, before Theo had a chance to notice it. Theo received IV antibiotics that Tuesday and the next day in clinic. Way better than having to take a 10 day course of antibiotics at home. The ear infection cleared up faster than you can say “ear wax” 10 times clearly in a row. Go on, try it. It’s harder than you think!
After Theo’s appointment on Wednesday, March 17th, we headed back to Kingston. For the most part, Theo was feeling great. Full of energy and smiles. He is such a positive, happy, silly kid. Even when he is feeling sick he still manages to make jokes and smile. We were not due back to see his doctor for almost five weeks! Wow, that’s a long time. Well, we lasted two weeks. We had some concerns that needed to be addressed. First, Theo was still coughing up junk in the mornings. We didn’t stress about it too much at first, knowing his lungs were clear. Theo was also constantly clearing his throat throughout the day. We made an appointment for Tuesday, April 6th. His doctor took a good listen to his lungs. His once clear lungs were making music again! They had filled up with fluid after only two weeks of not using Albuterol. WHY? Why is it so hard for Theo to shake these viruses? Theo may be in maintenance but he is still taking many medications that purposefully suppress his immune system. Therefore, his immune system is not as ROBUST. It is not working at its full capacity. Immunoglobulin G (IgG) is an antibody that helps protect our bodies against bad bacteria and viruses. Theo’s doctor told us that if Theo’s IgG levels are low, he may be a good candidate for a transfusion of IgG, thereby giving his immune system a boost without changing the dose of his chemotherapy meds. Presently, Theo is back using the Albuterol inhaler.
The other concern that drove us to make an appointment for that Tuesday, April 6th, was some ankle pain Theo was having. Theo is hard to slow down. If Theo is not jumping off furniture or doing his wild Spider-Man moves, something isn’t right. We can usually tell how well Theo is feeling by how active he is. He does not easily complain of pain or feeling unwell. For him to speak up about it means it must be serious. Starting the morning of March 17th, Theo complained of pain in his left ankle. It was completely random, while he was sitting up in bed. It hurt to walk initially, but fortunately the pain did not last long. By the following week, Theo was reporting sudden and random pain in both ankles and his left hip. The pain was great enough to stop him in his tracks, mid run. It was so unpredictable and there were no obvious signs visible to our eye or memorable events where Theo had injured himself. The ankle pain was becoming more frequent and therefore a major concern.
Theo’s doctor had some ideas of what could be happening. One likely cause of the ankle pain could be from long term steroid use. Steroids, when taken for along period of time, can cause avascular degeneration of the joints. In severe cases, kids have needed joint replacement! Wow, the lava in my stomach was bubbling inside me as I listened to the doctor explain all of this to me. But before we went any further into this horrifying nightmare, the doctor needed xrays taken of Theo’s ankles, knees, and hips, to see if there was any abnormal growth in those joints. Phew!! Good news. The xrays showed NO abnormal growth, nothing abnormal at all. Therefore, the pain is likely a side effect of our favorite (haha) drug, Imatinib. Studies show that 30% of patients taking Imatinib experience random musculoskeletal pain. Unfortunately there is not much we can do at this point but just monitor and treat the pain as needed. Presently, Theo is not having ankle pain. Nor has he needed any pain medication. His next appointment in on Tuesday, April 20th, to check blood counts, see his doctor, and as long as his lungs are clear and he’s not coughing too much, get a back poke.
Before I continue, I owe you all an apology. I made a mistake. In my last blog entry I told you that numbing cream makes the veins shrink, which makes them more difficult to access. That is NOT true. Numbing cream does not effect the veins at all! HYDRATION is key. If the veins are hydrated, they will be more visible and easier to access. If the veins are not hydrated, they will “fall asleep” and become flat. So, in order for Theo to have a successful poke in his hand for a blood draw or IV, he needs to drink a LOT of water. Unfortunately, sedation procedures that use general anesthesia, aka back pokes, require the patient to be NPO (no food or liquids six hours prior to the procedure). Theo drinks as much water as he can the night before, but he is not allowed to drink anything, not even water, in the morning on the day of the back poke. The nurses are so incredibly kind, patient, and gentle. They tried to start an IV in Theo’s hand on Tuesday, March 16th, but his veins were too flat. Again, it became too painful to keep searching for his vein with the needle, so they ended up accessing his port. Accessing his port was so fast and easy compared to starting an IV in his hand. It makes me think, is having Theo’s port removed such a great idea after all? Now I am not so sure. Yes, having the port removed would be amazing, why? There is lower risk of infection (because no direct line to his heart) and also, Theo could play freely without having to worry about hitting the bump under his skin and causing pain or damage. But what happens if the nurses have trouble accessing the veins in his hands and there is no port to access as a backup?? Oh brother, then we’d really be in a pickle. Theo’s doctor’s advice was this: keep trying IV access through the hand. If it works more consistently, then we can have the conversation about removing his port. Bottom line, there is no rush. We have time to keep trying and see how it goes. There is no “better” way to do things. Whatever Theo is more comfortable with. OK, it’s settled, that’s what we are going to do.
On Tuesday, April 6th, Theo prepared for another poke in the hand, Theo drank water non-stop the night before his appointment as well as the next morning. I was hopeful that this time was going to work. Unfortunately, to our great disappointment and surprise, Theo’s veins were too flat. Really?!? Unbelievable. How could that be, after all the water I had seen Theo drink in the last 24 hours? The nurse asked Theo if he wanted her to try his other hand or just access his port. With a shrug, he said, “port I guess”. At this point in Theo’s treatment, it is a non issue. After everything he’s been through, after all the pokes, the nausea, the pain, the icky tasting medicine… why overthink it? What’s the point in worrying about something you cannot control? Just do what you can and move on. We’ll keep trying, but if it doesn’t work, then that’s OK. Moving forward. As Theo will often say now, “tomayto tomahto”.
What have we learned? ASK QUESTIONS! But there is not always a straightforward answer for every question, every ache, and pain that Theo experiences. We believe in and trust Theo’s doctors, their plan, and their research. We are incredibly fortunate that Theo is being treated at one the best hospitals in the world for treating leukemia. Seen by some of the most knowledgeable and experienced doctors with access to millions of recourses. Sometimes the path for treatment is clear and straight. Other times it has twists and turns with layers of thick fog. Don’t forget, most therapy maps are part of a clinical study. And through those studies, researchers and doctors learn how to treat better and more effectively. It is an ongoing process. It is the necessary journey to one day finding a cure.
Sometimes Theo is feeling so good and looking so good, we forget that he still has cancer. I mean, this kid is taking chemotherapy every day! Toxic pills that are killing his insides and causing all sorts of bizarre uncomfortable side effects. If I was taking all those meds, I don’t know how I would feel or if I’d be handling it all that well. It is finally spring time. The sun is warmer and fun awaits outside. Does Theo want to go outside and play? Of course he does! But on the days he does not and would rather be cozy on the couch under a blanket, well then, he should. We easily get wrapped up in the need to take advantage of the sunny days. After all we live in the northwest! Sunny days are like gold! Don’t miss out, because tomorrow it might rain and then you won’t see the sun again for another week… or three! We want to encourage Theo to get out and play, be a kid, get fresh air, and meet the neighborhood kids who are always outside playing. We want life to feel “normal”. We want to take back the spring and summer we didn’t get to experience last year because Theo was in bed all day or at the hospital. But what does Theo want? What do any of us want? To feel good and NOT have cancer. So what’s the rush? Let’s just enjoy where we are today. Take a moment to remind ourselves how far we’ve come, Luis, myself, and especially Theo. Today life is better. Let’s celebrate THAT. Eventually, we will go to Japan, Hawaii, Mexico, and of course, to the aquarium. Until then, let’s eat ice cream!!
“Today me will live in the moment unless it’s unpleasant in which case me will eat a cookie” – Cookie Monster
3 thoughts on “Tomayto Tomahto”
Excellent writing Kelly💕💕
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I read your post Kelly and I’m so glad you are writing about Theo and informing us about how he is and how you all are doing. One thing that always stands out about you and the same feeling I get from Theo and all of the pictures you post is that I feel so much positive energy, pureness, love and happiness that it makes it almost unbelievable that u are dealing with so much! You and Theo are so brave and so strong and I believe you will get through anything in life and good days and happy life is ahead of you. Lots of love and hugs 🤗 ❤️
Theo, you, and Luis are experts at making world famous lemonade out of lemons! Heroes three, yes you are. ❤️❤️❤️