The Fear of Knowing

As Ava mentioned in her post she will have a bone marrow aspiration tomorrow. It’s a big deal. The results of this BMA determine were we go from here. Do we continue on the current roadmap or do we move on to CAR-t therapy and a potential bone marrow transplant. It would be a lie to say I’m not a ball of nerves waiting for the test and even more over getting the results. Not knowing and waiting is hard. It sucks, but I’ve also learned knowing is just as hard, if not harder.

When you don’t know you can still have hope. Hope that this journey we’re going through is working and hope that in five to six months we can move on from weekly chemo and help our girl regain her “normal” life. A life with school and peers. A life were she can do normal teenage things. I’m not sure it will ever be fully normal, but more normal than it is now.

It may sound crazy, but even now this feels like it’s a bearable normal. AJ’s feeling so strong and she’s so full of energy. She’s handling the chemotherapy well. She’s gaining weight and healthy. She had a cold and didn’t get a fever. We spend one day a week at clinic and the rest of the time she’s chillin at home. She’s visiting with her cousins and learning how to wear makeup. She misses her hair, but besides that she looks like her old self. So this last month has felt “normal”. It felt doable. Not knowing what we move on to next is almost as scary as facing the two paths and knowing that one is way harder.

I know Ava mentioned chemo brain, but we’ve just recently seen how much its affecting her. She’s struggling with how much harder school is now and having difficulty adapting to her new challenges. It’s so hard to watcher her work so hard to remember things she’s just read. We keep trying to assure her that her health is our number one priority and that grades don’t matter, especially at the moment. But she keeps telling us how she has plans for her future and she won’t reach those plans if her grades aren’t good enough. She’s also concerned about how she’ll manage when she has full course load. As much as Kevin and I try to keep her focused on the moment, it’s also so nice to see her so focused on her future. The fight in her is strong.

She has no fear of the BMA. She told us on Sunday that she’s excited for it. When she said that I about fell over. Excited?? Then I remembered that while I grilled her oncologist at our appointment on Friday she looked at me and said, “Mom I had 1.6% leukemia in my bone marrow over eight weeks ago. The chemo killed 98% in four weeks. Now can I get my questions in for Dr. Molina? So do I permission to go trick or treating?” Her faith and positivity inspire me. Or maybe it’s her age. She has no fear of knowing the results.

As her mama I’m full of fear. I’m constantly refocusing and changing my thoughts to more present things. Every time my mind starts to wander I pray an Our Father, Hail Mary, or Glory Be. Sometimes I pray all three. While it definitely helps, the fears keep coming. Kev definitely held me up today when I went into my what if’s. My sweet coworker definitely boost my confidence whenever my voice quivers about Friday. As we get closer I feel myself pulling away and trying to spend more time alone because it’s hard enough to answer questions about how things are going when you don’t know, but it’s even harder when you’re scared of knowing.

Thankfully we both got some good distraction with the World Series, woohoo Nats! I am also grateful that she got to enjoy Halloween today and I’m so encouraged that tomorrow is All Saints Day. So I’m choosing to focus on those things and the pictures below to get me through the anxiety. Hopefully it works and I can ignore the voice reminding me that once you know, you can’t not know.

AJ says that Lady in Pink doesn’t smile.
Navy Seal
Costume Number 2
First Costume

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