Tempus Fugit

The elephant eats. The elephant eats. The elephant eats to see some beets. He eats some beets. He eats some beets. He eats some beets to not eat meats.

In case you didn’t know, Theo is the BEST rhymer of all timer. He came up with this poem one day after hearing me read the poem, “The Bear Went Over the Mountain”. Are you familiar with that one? “The bear went over the mountain. The bear went over the mountain. The bear went over the mountain, to see what he could see. The other side of the mountain. The other side of the mountain. The other side of the mountain, was all that he could see.” Theo gave me the most puzzled look and then just started to laugh. “Really?!? That’s it?” He said through his laughter. He figured if someone can make a poem that simple, so could he… and better. Theo has heard me recite many silly poems for his online language arts class. He can hardly believe that a real poem can be so silly and sometimes not make any sense at all! He often criticizes them for not rhyming that well either. Like in “Ladybug Ladybug” the words “home” and “gone” do not rhyme! At first, I did not see why I should bother reading some of the poems, just because of how nonsensical they are. Who wrote this? Why is this still being taught today? What does this even mean? Aren’t there other poems we can teach our kids? But not Theo. He finds the poems so funny. The more illogical and absurd the poem, the better. It has turned into a fun game for him to create a funnier, better rhyming poem than the one I read to him. Now that’s what I call fun learning!

Who’s ready for a swim?

Maintenance continues…

So where were we? Oh yes, back in April. It’s time to play catch up! Starting with Theo’s back poke on Tuesday, April 20th. As usual, the first appointment is for labs, aka a blood draw to check blood counts. Then a visit with the doctor to go over the counts, review Theo’s chemotherapy and plan, ask questions, and address any concerns. The last appointment of the day is (fingers crossed) a lumbar puncture to receive intrathecal methotrexate, aka back poke. I’m so glad Theo loves getting back pokes. Otherwise days like these can be very long and slow moving. There is a lot of waiting time between the appointments. Add that to not being able to eat or drink and that can make for one cranky kid! Theo, however, is always in a great mood. He can barely contain his excitement for the sleepy time room. Shouting to every nurse that walks by about it and busily preparing Bobo and his stuffies for the sleepy milk. Theo is such a delight. He has a thoughtfulness about him that runs so deep it radiates like the bright sun shining on a blue bird day.

Sand in toes, fries in mouth

Well folks, it looks like the port is staying in for a while. Theo made the decision to stop trying the hand pokes. He prefers to get his port accessed. He says it is much easier for him because he is used to it and it doesn’t hurt. We completely understand of course. So there you have it. He has agreed to give it another try later, maybe in the next couple of months. Although, his port will come out no matter what in January 2022, when his treatment is complete! That’s only eight months away!!

So on with the labs and provider visit… Theo’s lungs sounded much better, however, his doctor could still hear some wheezing in his right lung. We were instructed to continue using the albuterol inhaler until ALL signs of a cold/cough are gone and his lungs are crystal clear. His ANC and hematocrit looked good, but his platelets were low, just above the threshold at 58 thousand. We were instructed to return in one week to check platelet levels and if needed, receive an infusion of Immunoglobulin G (IgG). Everything else looked great! There was no pain or other concerns to report or discuss. Just to make sure he was okay for anesthesia in the sleepy time room, Theo’s doctor asked the anesthesiologist to listen to Theo’s lungs. Dr. Karl has been the anesthesiologist for every single one of Theo’s lumbar puncture procedures. We LOVE her. She is Theo’s favorite doctor (just confirmed). Dr. Karl and Theo get along so well. In fact, when she came into the room to listen to Theo’s lungs, they got distracted having so much fun that the nurses had to come looking for her and pull her back into work. She cleared Theo to get a back poke, which, we were all very happy about.

Another day at the beach

On Friday, April 23rd, I received a call from Theo’s doctor. His IgG level was at 257. An infusion is recommended for levels below 400. So on Tuesday, April 27th, Theo was back in clinic getting an infusion of IgG. It is just like getting blood or platelets. When receiving blood product, there is a risk of having an allergic reaction. Therefore, Theo took Tylenol and Benadryl prior to the infusion. The appointment in total lasted about three hours. We were also informed that Theo’s platelets had dropped to 42 thousand. A hold was placed on all chemotherapy, except Imatinib, for one week. Theo would have to return in one week for a lab visit to check blood counts again. His doctor told us that since Theo had already been on a chemo hold for three weeks earlier in Maintenance, his chemotherapy dose needed to be reduced. The following Tuesday, May 4th, Theo returned for a lab visit with his Papa. It had been months of Theo asking for Luis to go with him to his appointment. Unfortunately, only one parent is allowed to be with the patient during appointments. Luis is extremely busy working full time and more. When Theo was admitted to the hospital, Luis would do his best to come to the hospital and give me breaks so I could leave for a few hours. Since I am not working, my job is taking care of Theo. Taking him to his appointments whenever they need to happen and stay for however long is needed. I have the ability to drop whatever I am doing to rush to the hospital with Theo. Luis does not. But this time Theo was begging for Luis to go with him. (No hurt feelings here). Theo was so proud to show his Papa how brave he is when he gets his port in. So excited to show his Papa how the appointment works. It felt weird not going with Theo, like I was missing out. But I love that Luis was able to be there with Theo this time. They are mirror images of one another. My lovies. Those two old souls are my everything. Fortunately, Theo’s platelets have recovered. The current plan for Theo is to continue with his chemotherapy but at only half the dose. Also included in the plan… TO HAVE FUN. I think we can handle that. With two dogs, a beach two minutes away, a love for nature, and a wild imagination, Theo is having no problem at all having a good time.

Luis and his little helper building a fence

Tempus Fugit. That’s Latin for “time flies”. Grandma Ethel used to joke that it was one of the few Latin phrases she remembered from school. Wow, time DOES fly though! It was only four months ago that Theo still had his feeding tube in. Four months ago Theo was still so weak. Four months ago Theo had no hair. I don’t even remember what Theo looked like four months ago! He is a completely different person today than he was back in January, inside and out. It’s amazing how much he has changed in such a short period of time. Looking back four or five months at previous blog entries, it feels like it was years ago. Last December Theo spent 14 days in the Cancer Care Unit. Today, Theo is playing at the beach, climbing rocks, and doing hand stands. How can this be? Where is my sadness, my anxiety, my fear? I am like a kid who used to be scared of the boogie man hiding under my bed. Always afraid that something bad was going to happen. Waiting for the boogie man to come out and attack at any second. No. Not today. The only sound that wakes us up in the dark is the hooting of the night owl. But this is not the end. There is no end to this fight until there is an end to cancer. I dream of the day that this is all just a bad distant memory for us and Theo. And even when that day comes, we will continue fighting for ALL CANCER PATIENTS in the battle against cancer until we will reach glorious victory!!!!

*You can help in the fight against cancer! Join me on Saturday, May 15th, in the virtual Big Climb. Or make a donation to the Leukemia and Lymphoma Society to help fund cancer research. Please visit my personal fundraising page at http://www.llswa.org/goto/TheoMyHero We are in this together!

Beach days with my beach boy

“Today is your day! Your mountain is waiting, So… get on your way!” – Dr. Seuss

Published by kavila38

The mother of the beautiful, smart, best rhymer of all timer boy with leukemia hoping to keep friends and family informed of my son's progress through treatment while also expressing my feelings and making poetry

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