You are in your second week of your third round of treatment. We are just waiting for your counts to drop and then recover. You are in isolation again. But you amaze me. It has yet to get you down. We are becoming isolation pros…which really isn’t anything to write home about; but, hey, it’s something.
This round has been rough on you. Besides being in isolation, your little body is hurting. Your skin has a few new rashes. One around your cheeks and mouth, the other on your legs. The rash being a side effect from the Cytarabine (chemo). Before your hemoglobin transfusion this weekend, the color had left your skin. Your eyes were hollow and your energy was depleted. Eating and drinking were low on your priority list, while sleep was at the very top. When you were awake, you were sick…so sick. As you were hovering over a bucket or the sink, you would look up at us with your tear-filled eyes that begged us to take this away from you. But we couldn’t. They tell us that each time you will probably feel worse.
It rips my heart out. But in a weird and unexplainable way, it gives me hope. You are fighting everything that is happening to you without fear. You do it so naturally as though you know no other way to feel. Of course you would have no way of knowing that chemo is supposed to make you feel terrible or that your body would change. Maybe that is what helps you through it all…just going with the flow, unaware of the things about cancer that as an adult I am aware of. And in all of pain, you still need me. You know what I have to offer and the little that I can’t, you fight on your own. As long as you need me, I will worry less.
After this round, you will be half way done with treatment. Half way done! I can see the end even though it seems out of reach. I clearly envision you after all of this. I see you running around our campsite with Kendal and playing at the beach. I picture you in a lace trimmed dress twirling and dancing at your Aunt Megan’s wedding with enough hair to part off to the side with a clip. I imagine you walking into early education at school in the fall with your ladybug back pack blowing me and your dad a kiss over your shoulder.
There will be a life free of chemo, free of lines and tubes and medicine. There is life outside of these hospital walls just waiting for you to discover it again. No one telling where us where you should not go and what you cannot do. Leukemia has become so much a part of your life that I don’t even think about you having Down syndrome these days. There is really nothing that you cannot do!
Today I am starting a list for you. I am a list-maker by nature. Once you have read this, you will have already accepted your lifetime supply of lists from your mother. But I bet you like this one the best.
This is a list that will be full of things that you WILL do when you are all done with treatment. Little by little we will enjoy crossing off each line as time goes by. I don’t want to call it a bucket list…that feels wrong. It is a to-do list celebrating all of the things that as a child you should be able to do! So I am going to call it the “Tessa-Do” list. Compiled of my dreams for your childhood, my goal will be to turn it into a “Tessa Did” list after we successfully accomplish everything on the list.
The list is simple and realistic, but it is not full just yet. No, I don’t wish to take you skydiving or get you to ride on an elephant (although those would both be pretty cool). I just want to give you an ice cream cone for lunch a few days or take you to Jumping Janes or on a walk to the park with the rest of your family in freedom.
For every moment that cancer has taken from you, I promise to give you a new and better moment that you deserve…that you and your baby sister and big brother deserve, too. So please know that we will celebrate this list with your siblings as well. Because I don’t want cancer to rob what it is like to be a mom either. I don’t want to forget the everyday things that make each new day a gift.
Without further ado, the “Tessa-Do” list:
“The rest is still unwritten…”