So far this round of chemo has been fairly uneventful. Of course, seven or so days from now her counts should bottom out, so it will really be obvious at that time how she’s doing with this cycle. Phoebe’s sodium numbers have stabilized this week and we even got some answers about her kidney issues.
Nephrology stepped in and gave us some insight from their perspective after her urine tests came back and showed large amounts of Potassium being dumped. We have known that Phoebe’s body was not absorbing Potassium and have been supplementing her twice a day with large amounts to keep her numbers stable. We also knew that this was likely a kidney issue and have been told that these issues often correct themselves once chemo is completed.
About a month or so ago Phoebe was diagnosed with a nasty UTI infection. The kind of bacteria that caused the infection is extremely resistant to antibiotics and therefore must be treated with high dose, IV antibiotics that can also cause kidney damage.
It appears that Phoebe’s tubules sustained some damage, possibly temporary, that have caused Potassium dumping. The low Potassium messes with her sodium and on Sunday her Potassium was dangerously low, which in turn helped her sodium become dangerously low, which caused her seizure. It’s all a mess.
This week they have started Phoebe on a new drug that helps the body isolate and retain Potassium and we are hoping to see good results once it kicks in. This is big stuff..and it’s big because we can’t manage her sodium at home if her Potassium is a wreck. Although there are blood sugar testing kits for people with sugar Diabetes, there currently exists no such testing tool for blood sodiums.
So, aside from taking her to the lab every day to have her port accessed or blood drawn, we can’t track her sodium in a predictable way if her Potassium issues continue. Please pray for balance in her sweet little body. Electrolytes need to come into line. Kidneys need to heal and be restored.
Tonight is her last night of chemotherapy and typically she would be released to come home tomorrow, but with her current electrolyte issues she will stay a bit longer until everyone is confident we can maintain her stability at home.
She enjoyed a visit from her 2 favorite PT’s ever, Erin and Anna, and had lots of fun at the Christmas party in the Oncology playroom. I am always blessed and so impressed with Children’s Medical Center and how they go out of the way to make these kids feel loved and valued by creating a warm and fun environment for them while they are going through the toughest season of their lives. It ministers to my spirit to see so much goodwill and to see so many people loving on my girl.
I also want to say thank you to the life-group from The Village church who has been bringing meals, coffee, and treats for our family. Your hospitality blesses us more than you know and makes our hospital stays more bearable.
We are lying low this week after fighting off a tummy bug. Deacon and I seemed to take the brunt of it, and I am so glad Phoebe didn’t catch it. I have a lot of disinfecting to do before she comes home and we will be staying in a lot until Christmas is over, in hopes that we can keep everyone healthy enough to actually spend Christmas together. I am trying to keep my expectations in check because I know her counts will be low right around then, and there is a very real possibility we could be in the hospital getting a blood transfusion or platelets. But, I am praying for a Christmas together..
Thank you to all of you who love and pray for us,