Is it possible to keep faith yet be guarded in optimism?? Are you trusting God if you’re scared to hope? Can you say you’re thankful, while worrying about being “jinxed”? These are the questions running through my mind. The ones keeping me up. The ones nagging in the background.
Yesterday was supposed to be a great day for Ava. It was her “cousins day”. She was so excited to spend time with her sister and cousins. At barely 7 am my sweet mom texted the she was sorry to bother me, but Ellie had woken up with a cold and a fever so they wouldn’t make it. My first thought was “a fever? Dear God watch my girl!” My second was “of course I knew we were too lucky, we went to bed too confident, too hopeful.” You see Friday was a good day. Ava had her 2nd treatment. Other than being sleepy and annoyed with me for making her walk so much she was good. The doctors even made a deal with her that if took in enough liquids she could be unhooked from 2-10. Kevin and I felt good. We got pretty good sleep. Then we wake up and start to worry about Ellie.
During rounds Dr. Cooper mentioned that they had a bit of good news for us. They got some results from the genetic testing of Ava’s leukemia and it was good news. She does not have the Philadelphia mutation and had some kind called double trisomy (or something to do with trisomy). Though it’s uncommon in teens it’s has a very favorable response to chemo and has a high cure rate. They told us that this type of cancer is very greedy. It doesn’t wait to split into bigger cells and loves to hide in the bone marrow, not coming out into the blood unless it absolutely has too. This tells us two things
- She’s been fighting leukemia since December 2nd. It’s a smoldering cancer that lurks for as long as possible.
- It is so greedy that it will suck up most of the chemo in an effort to grow as quickly as possible, hopefully killing itself off.
If your anything like me your seeing the blessing and also thinking “If that doctor at Children’s (in JANUARY) had only done the bone marrow biopsy we’d be so much further along! We drove to that appointment expecting to have or at least schedule a bone marrow biopsy. Our amazing pediatrician had prepared me. We were all shocked and too eager to hear it wasn’t cancer we never questioned why he didn’t order it.
Anyway after rounds we felt good. We were like okay she doesn’t have AML, she doesn’t have it in her spine, she doesn’t have the Philadelphia mutation. We’re so lucky, so blessed! Then the next thought between us “You know she’s definitely going to have that last mutation the one like the Philadelphia”. There goes the doubt. The preparation for a letdown.
Before her cousins came Ava went down to gift shop and picked out small gifts for each. She planned what they would do and then we waited. It kind of felt like she was getting ready to receive a group of day campers. While we waited we nagged, begged, pleaded, and scolded her into drinking water. Have I told you my girl is STUBBORN? It takes a lot for her to do something she doesn’t want to. Talking her out of something is even harder. It can be annoying as hell, but I’m certain it also is what makes her such a fighter and with age it will help her be successful.
It was during this time she let me know that she would be cutting her own hair by the end of the week. She must have seen my face because she responded with, “Mom it’s going to fall out anyway. This way I get to do it when I get want. And no I don’t want to shave it.” She called Trevor and asked him to help her. God bless him, he handled it better than I did.
The cousins visit went well. In typical Ava fashion she spoke very little. But she was able to show them the hospital, spend time building Legos, and just having a normal Saturday chill session with them. Like when we are all at the pool or at someone’s house she just sits back and watches. Shortly before they left Ava told me to order them a chocolate milkshake from the secret menu because it was so hot and they would like that. It just reaffirms her love language is acts of service or gift giving. Even though she was asleep when the shakes came and when they left I’d say she had a good visit.
We were all feeling good. Then Kevin and I stepped outside our little room and started chatting with other parents on the floor. Hearing the stories is plain heartbreaking. Three and four year olds going through bone marrow transplants, car-T treatments, and other things no child should ever have to experience. The stories of relapses and failing treatments, they hurt. All that positivity we’d had about Ava’s leukemia just being a set back we would soon look back on and say made us all better people started to shrink. The doubts and worries came surging back. What if she has a similar experience? What she fails chemo? What she is part of the 10% who doesn’t get cured after round one? What we lose her? Those fill my head. I mean she’s no better than any of the other children and babies here. They’re all just as loved and prayed over. How is it decided? What do I do to make sure she’s one of the “lucky” ones. Am I losing faith it I don’t allow myself to think she maybe one who doesn’t have to suffer as much? Am I being faithful when I tell myself just expect the worst and you won’t be disappointed? Is either option fair to Ava?
Shortly before bedtime we got a FaceTime from Ellie. My brave little girl who’s home with my mom broke down and told me how all she wants is her whole family home. She just wants her mommy, daddy, and sister home with her. (Since Ko was sick at the beginning of the week my sweet cousins took him to the beach with them. We all agreed it would be the best way to keep him from being disappointed he couldn’t come to the hospital. Ellie could have gone, but chose to stay “near her sister, because she’s her best nurse”.) Seeing my sweet girl in tears worrying about her sister and just wanting things to be normal crushed me. This is my baby. The one who loves to cuddle, the one who has special books we read when she’s sick, and here she was begging us to please all come back to her. While I said almost anything to cheer her up to assure this situation would pass, I couldn’t bring myself to share the secret Kev and I have been holding on to so tight, in fear it would get her hopes up and then just be a bigger letdown when it doesn’t happen.
On Friday the during rounds the doctors mentioned how Ava’s was responding so well and staying fever free. So we asked does this mean we could possibly be out of here before August 13th? They said depending on how she was this Monday, as in tomorrow, they’d discuss a midweek discharge with us. Later we got notification that we have an outpatient infusion scheduled for July 30. We were so hopeful we told our moms. Yesterday, during rounds they said they didn’t schedule it and it must have been automated to hold the spot *just in case*. Not going to lie we were slightly crushed. So as much as I wanted to give Ellie some kind of hope that she’d get her prayer soon enough I couldn’t. Does that mean I turned my back on having faith?
I’m supposed to head home today to take a shower, do some laundry, and love on my Ellie. We’d discussed me leaving as soon as I woke up and missing rounds. Yet here I sit wondering do I do it? Do I wait and hear what the doctors have to say today? My go to thought is if I stay it will be good, if I go I’ll miss something and kick myself for not being here.
The thought I have in my heart is God will tell me what I need to hear when I’m supposed to hear it. Where I am won’t matter. We weren’t supposed to know she had leukemia in January. We’re not supposed to know Ava’s journey with leukemia now. We’re are supposed to trust. Trusting is hard. It means having faith God has this. It means understanding God’s plan whatever it is is far better than mine. I won’t say I’m there yet, but I keep trying. All I can hope is that trying counts for something.