Ginny’s Story

Site created on November 19, 2023

Dear Family and friends, 

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

As some of you already know, we have unsettling news to share with you. We are grateful for the excellent care from Ginny’s doctors here at Beth Israel Deaconess Medical Center in Boston and for the loving words and prayers from an overwhelming number of you.

Ginny had her annual physical on Wednesday (November 15). On Thursday morning her doctor called, saying her white and red blood cells are extremely low. In the Emergency Department, the Hematology Oncology team did blood tests and a bone marrow biopsy. We have the results of the cells and are awaiting the results of the bone. She has a diagnosis of acute myeloid leukemia.

Ginny is going to stay in the hospital another week because her immune system is very suppressed and they can prevent infection better here. She will start chemo injections tomorrow for a week, and have these every month (daily for a week) as well as 21 days of chemo pills. This will be for the rest of her life.

For those of you who want to know more, see the detailed update.

Newest Update

Journal entry by Fern Remedi-Brown

Dear Family and friends,

Ginny had a blood draw today in the Hematology/Oncology clinic.  We met with the Nurse Practitioner, Sara.  Dr. McMasters is on service in the inpatient floor this week, so she wasn’t at our appointment.

We felt a bit surprised that Ginny’s Absolute Neutrophil Count (ANC) was 0.39 K/uL (normal range is 1.6-6.1), meaning that it had dropped slightly from 0.41 last week.  Sara said that this is not considered to be a significant difference and it’s expected

As a result, chemotherapy Cycle 5 (both Decitabine infusion and Venetoclax pills) will be deferred until next Monday, May 6 rather than today, Ginny received a Neulasta injection to boost her white blood cells, and Sara said she should continue to take Cefpodoxime antibiotic until next Monday.  Ginny asked about side effects of taking Neulasta.  Sara said that in large doses, it can lead to bones being achy and sore.  Sara told us that the amount of Neulasta that Ginny’s taking won’t carry that risk.

Ginny’s other blood count results were good.  Her Hemoglobin went from 7.5 g/dL to 7.8, whereas normal is 11.2-15.7, so not a big difference, but trending in the right direction.

Her Platelets went up from 45 K/uL to 132, whereas a normal range is 150-400.  Sara did mention that the Platelets are the fastest count to return after a chemotherapy cycle.  She also said that “the jump in the count is reassuring.”

Ginny has been really exhausted – in part, because she’s preparing for a fair to sell her jewelry on Saturday, May 4 – Wake Up the Earth Festival, in part, because she’s feeling quite tired from her last show – New England Folk Festival, in part due to various ailments, and, in large part, due to the disease and treatment. (We’ve learned that being Neutropenic also makes Ginny have loss of energy).  Sara did say that insufficient sleep doesn’t affect blood counts, but it sure does help to get it!

Next week Ginny will plan to start chemotherapy for Cycle 5 and she’ll have a follow-up with Gynecology post endometrial biopsy on Tuesday May 7.

Some good news!  Ginny found the fanny pack that she uses at shows!  It was buried in a bag in her trunk that she had not seen when we had first arrived home late last Sunday night (April 21).  That is a huge relief.   Many of you had said that you were praying that it turned up and we are grateful that it did!

I didn’t take photos today, so I’ll share with you a beautiful sunrise on my flight to Guatemala on March 4, 2024.  As we traveled west, the sun kept setting again and again!  If I fly east again, I’ll try to remember to book a sunrise flight!  This is only one of the amazing colorful array of colors that lit up the sky!

May your days be easy and your nights restful.

Love,

Fern

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