8/3/19 $20,007 and the ER

I’ll start with the exciting news that Reese hit her Lemonade 4 Leukemia goal today!! She has raised $20,007, thanks to all of YOU. This collective effort is extraordinary, who would’ve thought that a little 5-year-old could raise 20k in two weeks? Well, I did. Because I know Reese and I know her team. This money will go directly to UCSF to fund groundbreaking leukemia research. More about this HERE!
Reese’s last lemonade stand was hosted by my parents today and family drove in from near and far to make lemons into lemonade and celebrate with us. It was brilliant, a sunny day filled with lemonade, children, love, and triumph. It’s one of those memories that is filed, for sure. There are still a few more lemonade stands going up this month, and a few others left to report, and I am still getting emails from lovely families who want to raise money for our fund… so I don’t have a final number and I won’t until the end of the month. But hitting the goal was sweet, indeed!

Now for the not-as-good-but-maybe-not-bad news. Reese was in the ER this week, the first time since we have been home (which is such a blessing, I know.) It shocked us back to reality, things have been so unrealistically smooth these past months.
I’ll start at the beginning, on Mon July 22 Reese stopped Jakafi. This is the immunosuppressant that is used to treat GVHD and Reese had been on it since last summer. We celebrated, it is beyond wonderful to peel off these drugs that are holding her immune system hostage. But, the reason they were holding her immune system hostage is because the graft (donor cells) were attacking the host (Reese). So I celebrated, and then held my breath. Last Sunday, July 28, Reese started getting itchy. It started with her left foot only, and after two days it spread. It’s mostly her feet and legs. She does not have a rash, just a bad itch. This was getting worse on Tuesday night when she went to bed and on Wednesday morning she woke up at 4am with terrible tummy pain and nausea. We stress dosed her steroids and waited for a fever. She was miserable all day, she didn’t eat, and then the fever hit at 4:30pm. So off to the ER we went, per her protocol. We went to Evanston (because it would have taken too long to get to Lurie in rush hour, over an hour.) Our doctors have approved Evanston as trustworthy (even though there is not a children’s hospital there) so we can go there to get initial tests and if they deem necessary, they send her via ambulance to Lurie. Reese checked out well, her stomach ache was actually improving by the time the fever hit, so I kind of knew it would be a short visit. Her white line (WBC and ANC) skyrocketed, which means infection (but her cultures were negative, thank god.) My mind was on a gut GVHD flare, so seeing those counts was a relief. As for the itchiness, that has me worried. There’s no reason for it and it’s constant. She is taking Zyrtec and a couple different lotions that aren’t helping. I know enough to know that skin GVHD can start with itchiness. I don’t want my child to have chronic GVHD for many, many reasons. But I also know that a whiff of it, that is easy to control, has anti-leukemic effects. Of course we want this, crazy strong t-cells that squash any possible cancer cells. But I know that she was steroid refractory and I’m still scared. So we are on high alert, watching for any rash, and we would take her in and get treatment immediately, it needs to be controlled. Of course, sometimes it goes away on it’s own. So we watch and wait. Meanwhile, Reese is in great spirits, and being 5. Her silly self is so fun for us to watch and my trio of girls is truly a pack of joy. I pray things remain stable, for good!

Link to Lemonade 4 Leukemia, to learn more about our endeavor:


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