Team Ada

another full day at the hospital. Ada's platelets were at a 12 and at a 10 is usually when they transfuse. Because she was so close and is still doing oral chemo and shots with chemo we did a platelet transfusion. I'd rather do it now instead of at midnight at the ER.

She brought her bestie Archie some decoration to borrow and we will get it back when we are done with treatment ❤️

This morning, I noticed some petichae around Ada's legs. Petichae is usually a sign for low platelets and I called her care team. We are now on our way to check her labs and see if she needs a transfusion.

We all also had a very rough night of sleep so it was no surprise when both fell asleep right away.

Sweet Ada just took her 7/8 shot for this cycle of treatment. After she was done, she said "thanks mommy". She is too good. The nurses kept reminding Bryan when we were taught that this was for her to get better. Ada was sedated but I feel like she understands that.

This is how much medicine Ada has to take a day right now. This is how we are keeping our baby alive. Most of these medications are taken twice daily.

It is still so hard to force our child to take these medicines when Ada is crying but Bryan and I have learned some tricks to help. It makes it a little easier on all of us.

Ada is a champ for being able to take these. I'm sure by the next couple of weeks she will be sick of us telling her it's time for her meds. Bryan is a champ for being the one who primarily gets her to take the medicine. I am so grateful for him.

I hope one day, we will find a cure. But until then I hope Ada's story will help bring more awareness.

We came in to have Ada's labs checked and start the next doses of shots. Ada's labs are pretty low. Not low enough for a transfusion but since we are doing chemo shots and oral chemo for the next week she will probably need a transfusion on Tuesday or Wednesday.

Her ANC is at a 260 which means we are on lock down and staying around our house so she doesn't catch any infections. We are also starting some medications that Ada hates that will keep her protected while her ANC is so low.

Pray that she doesn't get too low that we will have to be admitted and that while her counts are so low that she won't get an infections.

The first photo is Ada and her child life specialist and the last photo we went to visit the hair stylist and got some head scarves and Conrad was the model since Ada left.

There are things Payton will probably never tell you about what it’s really like to have a child with cancer, so I want to share them from my perspective.

They don’t get to just live life the way they used to. They don’t get to go out to dinner to celebrate something, or even go out to dinner because they didn’t make anything that night. They don’t get to run into a store and just browse. They don’t get to walk around Target, take their time, or do normal everyday things that most people don’t even think twice about.

Everything has to be planned around keeping Remi safe. Groceries become pickup orders. Errands become something that has to be thought through. Going places, seeing people, and doing normal things all come with a risk that most people never have to consider.

And it’s not just Payton. My parents have had to change their lives too. Their home, their routines, and the things they’re able to do all revolve around protecting Remi. Their entire household has had to adjust because keeping him safe comes before everything else.

And Payton will never complain about any of this. She would give up anything and everything for her son without hesitation. But I don’t think people truly understand the price families pay when their child has cancer.

They don’t get to just go outside when the air quality is bad. They have to think about every germ, every exposure, every person they come into contact with. They can’t just be around crowds, kids, babies, or new animals without thinking about what it could mean for Remi.

They can’t just have family over. They can’t have visitors whenever they want. They miss hugs, conversations, and time with the people they love because every person coming into their space is another possible risk. They have to put distance between themselves and the people they love most, even when all they want is to be surrounded by them.

That means sacrifices for everyone who loves Remi too. It means missing moments, holidays, celebrations, and everyday memories that we wish we could have together. It means loving him enough to understand that keeping him safe has to come before what we want.

Cancer takes so much more than just a child’s health. It takes normalcy. It takes freedom. It takes the moments families should be spending making memories together.
It takes the simple ability to say “yes” without fear.
It steals time, plans, and the future you thought was just within reach.

So while Remi is fighting this battle, please remember that his family is fighting right alongside him. There is so much happening behind the scenes that people never see. The appointments, the fear, the isolation, the things they quietly give up every single day just to give him the best chance possible.

Because at the end of the day, every missed dinner, every cancelled plan, every hard decision, and every sacrifice is worth it. Remi is worth it. 🧡

-Aunt Lala

Remi was the first account I found after Ada was diagnosed! I hate cancer.
Please keep them in your thoughts and prayers!

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