Quilt #25 Joni Griffin and Eleanor

Joni Collins

Quilt #25 was presented to Joni Griffin and her baby girl Eleanor. I learned about Joni and Eleanor from Sari Johnson, my new relative by marriage and friend by choice. Joni's baby was diagnosed with cancer when she was just weeks old.

In Joni's words:

Eleanor was diagnosed with Acute Lymphoblastic Leukemia (ALL) on February 2 through an ER visit which initially diagnosed a "raging uti". Further blood analysis raised suspicions and a second analysis confirmed the heartbreaking news that our 11week old had ALL. She began treatment immediately; first surgery to place a central venous line (CVL) and then a month's worth of chemotherapy to begin to combat this viscious disease. In the meantime, life went on. My husband had just started another semester of engineering school while working full time at an engineering company and my parents took over caring for our 2 year old son. 

We finished our first month of chemo and we were released March 3 to turn around 2 weeks later and start round 2 of chemotherapy. That was finished in a month, but we had to stay 2 additional weeks for certains counts to come back up and we finally released Mother's Day weekend. 

Eleanor's leukemia didn't respond to the second round of chemo as they had hoped, still 60% in her bone marrow, so they went a non-traditional route and did antibody therapy. They created an immune response similar to allergic reaction with a specific medication: fever, nausea, vomiting, etc. That was the best thing for Eleanor because 15 days on that treatment and she was in full remission--May 24 will be a day forever burned into my mind. 

Because of her lack of response to chemo, Eleanor fast tracked her way to a bone marrow transplant. The preparations for it began during her second round of chemo. We began that process July 12: 10 days of high dose chemo with the last 3 including an immune system destroying drug. Her transplant was July 22 and July 23 was "Day 1 post-transplant". Almost made it through the 14-21 day window for engraftment (new marrow taking over) with no problems, but on day 19 she was diagnosed with veno-occlusive disease.

VOD can be fatal, luckily for us her's wasn't. Eleanor kept retaining fluid no matter the amount of lasix given and she was having multiple platelet transfusions a day. The fluid overload caused her to have breathing issues and got so bad that she went to the Pediactric ICU. She spent a total of 6 weeks in the PICU undergoing continual dialysis for fluid overload and also 2 intubations due to breathing issues. 

After that 6 weeks, it was relatively easy sailing. We spent a total of 3 months from beginning to end of transplant in the hospital; discharged on October 4. We had another small hiccup and were back in the hospital 9 days later with an infection in her central line. With removal of the line, things went quickly and we were discharged AGAIN (and finally) October 28. 

We have been home over a month and things are going well. She has clinic visits every 2 weeks and will extend to monthly shortly.
I felt a special reverance for life as I worked on this quilt. It reminds me that we are supported in our trials by angel above and on this earth. Thoughts and prayers go to the Griffin family as they continue this journey of healing for Eleanor and the whole family We hope they find comfort in this little quilt knowing they are loved by so many. Love in the stitches....

Sari Johnson and Joni Griffin. I love the photo of Christ
in the background.