*I started writing this post a week ago and just finished tonight – The girls’ check-up last week was good and their blood counts are great. We are working on feeding and growing for now*
This week the twins have their first follow-up appointment after being PICC free. Aside from the obvious stress this puts on me, packing up 3 tiny humans, myself, cleaning the house, finishing my homework, and making sure Aaron has himself fully packed and has someone lined up for Ammo pants, is a feat for any mom. The amount of stuff 3 tiny people need is outrageous! And of course no 500 mile one way trip would be complete without the weather acting up. Winter Storm “Kayla” (hehe, Kayls, I love that it has your name) has forced us to leave earlier than originally planned. Again, who am I kidding with these “plans”.
The weather isn’t the only thing being volatile at the moment. Many other cancer parents have used the term “scanxiety” which basically refers to the anxiety they feel before every scheduled scan after remission that check for relapse. Although the girls’ type of cancer doesn’t require any actual scans, it requires blood work. Leukemia is typically found in the blood. If their blood is clean we get to go home another 2 weeks before labs are done again. Anxiety over until then, right? Not really. The girls had an uncommon presentation of their leukemia. Their blood work, even after diagnosis, was clean. Blasts never were present in their blood or CNS. So even when we get the all clear on labs, the anxiety still exists. The threat is still there and still very real in my mind. I don’t know if that is something that will ever go away. The constant fear of “what if the cancer is back”.
When the girls’ were home last summer, before cancer, I used to look at them and all of a sudden be hit with the very real realization that I made two humans. At once. It was a crazy thought that was sometimes awesome, sometimes weird, and sometimes kinda freaky. They were both in there, together?! It’s hard to even imagine. Today I have some of the same realizations but they are along the lines of their cancer. When we are at home playing it sometimes hits me so hard that it takes my breath away. They have cancer. Both of them. At once. And now they are in remission. I don’t know if I will ever be able to say they had cancer. Although the thought of relapse isn’t all consuming, it’s still there. Almost daily that thought just hits you. There will be a minute you are just playing on the floor and all of a sudden you feel like you got punched in the gut and there’s no air. The real realization that relapse could happen. When that thought creeps in you just pray. Pray that those thoughts go away, that relapse doesn’t happen (I tell the girls it’s not an option) and start thinking about all the positives in your life at the moment. That’s all you can do. Be positive but prepared. And continue living life to the fullest every day.
I am still going through the phases of grief myself regarding our cancer journey. I feel that I am on the upward swing of these phases, but over the next few weeks I will be talking about my own personal experience of how I have dealt and continue to deal with grief. I grieve over the loss of my “normal” life. Over the loss of my girls’ 6 months. Over the loss of time we didn’t have as a family of 5. Writing is one of my coping methods. I want to say that I did put somewhat of a disclaimer in my last post and I received some messages about how it wasn’t needed and that no one ever thinks I am complaining about my situation. I wanted to address that. I know no most people don’t believe I’m complaining (which I am not) but I just want to be very careful of my words and how they can be unintentionally hurtful to those who have lost a child to this ugly thing called cancer. I never want to complain about being up all night with my girls because I know that another parent out there would gladly be in my shoes if it meant their little could be held in their arms again. My heart aches deeply, daily, for those people. Those brothers and sisters. Moms and dads. Grandmas and Grandpas. Those families. I don’t think a day goes by that I do not hear the news of another family who has lost a little. And each day I am reminded to be grateful for those sleepless nights. Grateful that I have to be frustrated with two littles who won’t eat. Grateful to have to drop NG tubes again and again. Grateful to make trips constantly back and forth to the hospital. And I am. I am grateful. I am blessed that my girls are here in remission and doing well. And I will never lose sight of that fact.
Follow us on Instagram @abbybreyfogle and Periscope @abbybreyfogle