Leona’s Story

Site created on December 1, 2023

Welcome to Leona’s CaringBridge site. Leona was admitted to Levine Children’s Hospital on 11/29/2023 when an 8cm mass was found in her anterior chest cavity. On 12/6/2023 she was diagnosed with B-cell acute lymphoblastic leukemia. Please read the past journal entries for her story. Thank you all for your many prayers, well-wishes, support, and generosity. If, in your charity, you wish to support Leona and her family and are having difficulty accessing Leona’s Amazon registry or GiveSendGo campaign page from the “Ways To Help” page, they are also linked below.

Amazon registry - https://www.amazon.com/registries/gl/guest-view/9YKE8T38OSLA

GiveSendGo page - https://www.givesendgo.com/leonadesch

Newest Update

Journal entry by Chad Desch

Hello, everyone. It's been a while since the last update. Fortunately, there hasn't been too much to tell until recently. Leona finished her first round of Blina without any issues. It turns out I was, thankfully, mistaken about the length of time. She was only on the drug for four weeks and had a week off from chemo in between Blina and Interim Maintenance 1, which we were very appreciative of.

Leona is a couple of weeks into IM 1 now. She's doing well so far. During this two-month phase we go to the clinic every ten days. There's blood drawn and lab work done to determine if she can receive Vincristine and Methotrexate. If her numbers look good enough (mostly her white blood cell count, hemoglobin, neutrophils) then her Methotrexate dose is increased ever so slightly. If the numbers do not look good, then things are delayed by a week at a time until they do. Additionally, next Friday, she should receive some Privigen (IVIG). This is to help supplement her Immunoglobulin, since her counts were recently low. It was a bit of a struggle to figure out how to work with insurance on this drug, but I think we finally got it sorted.

One of the side effects of Methotrexate is mouth sores and bleeding gums. Leona has had some teeth and gum pain that just started a day or two ago. It can interfere slightly with brushing and eating. Hopefully, it does not get any worse. Otherwise, she is still in good spirits. She's playful and fairly active and is mostly enjoying life. She likes clinic days now, because they involve lots of candy and screen time.

After this phase is through, Leona will have another four weeks of Blinatumomab before starting Delayed Intensification (2 months), during which time she will be the most immunocompromised and tired and likely lose her hair. Please pray she goes right through Interim Maintenance 1 without any significant delays. Some children breeze right through and for some children, a 2-month stage of chemo can turn into a 6-month stage.

We've had an interesting Holy Week so far, to put it mildly. I started returning to the office a couple days a week last week because I was feeling a bit disconnected from my team and work while working solely from home. Unfortunately, on the way home yesterday, I was rear-ended into another vehicle on the Catawba River bridge on Wilkinson Blvd. Fortunately, no one was injured and I'm not at fault, but my truck is presumed to be totaled. So now we have a new obstacle to navigate. It's rather unfortunate considering we just had some significant work done on the truck, but I suppose this is how these things often go. I was using the truck to get to work and also take Leona to the hospital if she got feverish, so I guess we're lucky that cold and flu season is over. We're in the early stages of figuring out how insurance will play out, but I don't expect I will get much for my truck. Please pray that things go smoothly. Finding a vehicle in this market is likely going to be burdensome and place a strain on our finances.

As always, thank you for your prayers and support, and God bless all of you during this Holy Week and upcoming Easter Season.
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