Breathe

First off huge thanks to everyone who came to Ava’s birthday parade. It was amazing. Kevin and I are continually humbled that so many people love and pray for our Ava. There’s no way we could have made it this far without all the support y’all provide. I’ve included a video of her parade at the end of this post. I apologize that it’s 12 minutes long, but that many of all showed up.

On the 8th Ava and I made the trip to Hopkins for her BMA. There was some excitement surrounding it because they moved the procedure to the OR in the middle my class’s math Zoom. Thankfully my teammate was able to jump in and teach until I was able to get back online. Yes, you read that right I hosted class from JH. Any cancer parents will understand the need to save any and all leave for emergencies.

Since her BMA we’ve been anxiously awaiting results. For me that means little stress baking, praying, and tackling decluttering projects. Kev deals with it by supporting me in whatever mood I’m in. My moms is also good about balancing checking in, listening to me vent, and giving me space to be quiet. Everyone else pretty much knows to stay out of my way. Sometimes I wish I could accurately communicate how it feels to wait and hear of your child still has cancer, has relapsed, or is going to need a bone marrow transplant. Then I realize I wouldn’t wish that level of anxiety, stress, or fear on anyone. Since I’ve never had cancer (knock on wood) I can’t say which is worse, but being a cancer parent leaves you with PTSD. That PTSD is certainly heightened when awaiting test results.

So anyway after waiting 11 days we finally got a call from Dr. Molina letting us know that the results from the NGS should a drop in the abnormal cells they’ve been tracking. They were 5 per billion and now they’re 2 per billion. He said they’re more confident that these cells aren’t leukemia and more likely primordial cells that won’t develop into anything. Ideally they’d love for that number to be at zero, but he suspects it may just be Ava’s norm. He also shared that as more patients like Ava have CAR-T they’ll see it come up more. We’re so lucky to have her at Hopkins with Dr Brown- the head of COG and Dr. Molina who also works at NIH. This allows them to present Ava’s case to doctors CHOPT and CHLA. Everyone agrees to proceed as we have. So at the moment there’s no need to go to transplant. The plan is just keep tracking the annoying cells. We all agree that in a few years we’ll just accept this is Ava’s make up and accept she’s just an annoying case. I mean she has been since the beginning so why change her MO?

So where does this leave us? Grateful and finally able to breathe.

At least until it’s time to await the results on the B cell test she will have this Friday. Then we do it again when she goes back her next BMA in late June. I will say as we get closer to six months I get a little more confident.

At some point this week my prayers changed into asking God to please let the doctors see that she was indeed healed. My heart knows it, 95% of the time my head knows it too. I mean take a look at the pictures and videos below. How could I believe anything else?

15 and feeling good
Ava’s Birthday Parade
Getting for her BMA
S’mores
I love when she naps next to me
Enjoying Kona Ice
During this time at home she’s definitely honed her cooking skills.
Sadly she’s won’t share her tips

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