Back when Kev and I started talking about having a family he mentioned he wanted to name any son he had Nemesis. Definitely not something I was on board with and we thankfully picked better names.
Besides it being a horrible name I think what bothered me most was that I’d never had a true nemesis. I mean ya there have always been people who bug me or that I simply don’t like, but to have a hate for someone or disdain just isn’t how I’ve lived my life.
All that changed when I heard the doctors say that Ava had leukemia. I tend to be a positive person who looks for the good. There is no good and no positive to Leukemia. And while I can sit here and say that we’re determined to be better people on the other side of the battle, that we’ll be strong because of it, that we’ll be more compassionate and empathetic to the suffering of others I must ask did we really need to go through it at all? Can we call that a positive reason for our daughter to have leukemia? I think not.
I’ve read of so many families and marriages who are torn apart by childhood cancer. So many who lose their homes. How it causes such stress on siblings and other family members. None of this is positive. None on this is “God leading you to something better”. I do not believe my God would allow this to happen for a reason or to teach something. It’s just bad fucking luck. Plain and simple.
Anyhoo, as much as I hate cancer I wouldn’t define it as my nemesis. My true nemesis are fevers. I absolutely hate them. Before Ava’s illness the only time we’d had to take one of our kids to the ER was because of a high fever. Poor Kohen was only two and the testing he went through seemed like the worst. On March 17, 2018 Ellie got a high fever and we were unable to go visit my dad as planned. He left us the following morning and I never got to say goodbye. On April 16, 2019 Ava had a temperature of 106 and we had to rush her to the ER. The vomiting it caused traumatized her so much she’s literally gone on hunger strikes to avoid it happening again. Yesterday fever of 101 caused the scariest night of my life thus far.
When I got home from school and took her temp I knew we needed to come in. I called the oncologist on call and with Kohen and Ellie’s help loaded the car. We waited for Kev and then headed to Hopkins. When we arrived she was at 99.7. I thought maybe the 101 was a fluke. Kevin and I thought maybe she’d get the hemoglobin transfusion we’d been told to expect for Tuesday and get to go home. When they told us her ANC was at 4000 the glimmer of a quick fix became more of a possibility for us. Then they kept coming into to her heart rate monitor, comment on her blood pressure being low and shit got real. The nurse said that they’d ordered and another antibiotics which was often an indication that she’d be admitted. We took it in stride and made plans. I was to go into work today and Kev would go Wednesday. We’d hopefully be discharged Wednesday night and be back home and at work by Thursday. We felt good. Next thing we know the ED doctor came in to tell us that because she’d gotten three bolus of fluids and was still having a low blood pressure she would require dopamine and thus need to be admitted to the PICU. Poor Kevin was trying to tell them that no she was an oncology patient and needed to be on the 11 floor.
It took us both a bit to realize that this was serious and would require more than a transfusion. It finally hit me when I asked the nurse to get Ava some Zofran because she was very nauseous and she told me she couldn’t leave the room until her BP was stabilized. She tried to reassure me that she understood Ava was feeling nauseous and as soon as it was safe she’d get her meds, but to me it wasn’t clicking. All I saw was Ava’s worst nightmare coming true. Throwing up is her nemesis. When the dopamine finally took effect and her BP came up she left to get the Zofran. No more than 5 minutes after taking the Zofran my sweet girl started dry heaving and throwing up bile. We get her up to the PICU and they blow two veins trying to get a line put in.
Watching her silently cry and being unable to comfort her is one of the worst things ever. Coming up with words to let her know we’re there and we understand is hard too. Saying it’s okay sounds stupid. It’s okay sounds stupid. It’s not okay. Telling her we’re there and we understand is also shallow because we’re not going through it we can’t take her pain. Saying it sucks sounds like the most obvious stupid statement ever. So I danced between them all just praying I was providing a little bit of comfort as I watch her steel herself while the tears fell silently down her face.
Then there’s all the nurses and doctors that come with the PICU. All these unfamiliar faces you’re trusting with your heart. It’s overwhelming and plain scary. The room is much bigger than the one we’re use to on 11S. You’d think that’s a good thing, but it’s not. There’s no chairs or bed close to hers. She’s surrounded by machines and neither Kev nor I could position ourselves to watch her or the awful monitors. They don’t ever fully turn off the lights or close the door. When we finally laid down at 2 am I began to pray the rosary. I think I made it through it all, but I can’t be certain. What I do know is the fear I had that maybe God’s tired of hearing my prayers. That maybe I’d used up my allotted blessings.
Next thing I know its 4 am and Ava’s calling me to use the bathroom. Bedpans, another new thing for us to learn to use and another way she’s forced to relinquish some of her independence. Some point in the early morning hours I start writing sub plans, emailing my team things I’m not even sure made sense, and requesting subs five different times until I finally got it right.
At 6 there’s a shift change and we get a recap of meds and some goals for the day. Around 8-9 the doctors did rounds and we’re met with about 10 faces we’ve never seen before and just a couple we have. The attending on the PICU floor tells us that all signs point to a bacterial infection, sepsis, which is like a punch in the gut. She explains the reasons the numbers can be worrisome is because if the bottom number gets too low it could cause a heart attack. Thankfully Ava is responding well to the dopamine and to the antibiotics. They finally ordered the hemoglobin and now we wait to see if they can wean her off the dopamine and what the results of the cultures will be. We told them she had been looking forward to meeting Megan Rapinoe on Friday and they give us a maybe, but won’t look us in the eye. In the meantime Ava’s asked to please be allowed to get up and walk around. They told her maybe, so she fell back asleep. In the PICU parents can’t use the in suite bathroom and they can’t eat in the room. This means we hold it as long as we can and are just now eating our first meals.
As usual God has shown me He’s always with me and He’s still listening to my prayers. The nurse who cared for Ava in the ED happened to be a second cousin of my team leader and friend Emily. The nurse who’s been assigned to her today attended Holy Redeemer just like Ava. All this makes me think maybe just maybe I haven’t used up my allotment of prayers.
Fevers are my nemesis and Jesus is my shield.