Cindy H.
Oklahoma
Birth Date: September 30, 2012
Diagnosis: Acute Myeoloid Leukemia
Theme: Colorful, Whimsical & Uplifting
in BRIGHT turquoise, pink & purple
Due Date: February 1, 2020
Cindy's Story
In late March of 2019, Cindy's left eye started swelling. We reached out to her pediatrician and they suggested we go to her optometrist. Her optometrist did a full eye exam and dilated her eyes. When she had been there in January she had perfect vision. This time her left eye was much worse, and they sent us home with eye drops and an appointment to come back a week later. We did this for three weeks and her eye was getting bigger and bigger. After three weeks we went back to the pediatrician, were given antibiotics, jelly eye drops, and an appointment to come back in a week. None of these things worked! We were referred to a pediatric ophthalmologist. My husband knew the doctor and got us in quickly. They did a thorough exam and gave us more drops. The doctor wanted us to do a CT scan or an MRI while Cindy was sedated.
In April, after a week of not hearing anything, a friend of mine reached out telling me how serious this could be. Her daughter had experienced something similar with her eye. She urged me to not wait any longer and to go to the ER and wait for a scan and not leave til then. No appointment for the scan had been made, and they were still waiting on insurance to approve it. On Tuesday, April 30th we took Cindy to Childrens ER and have been inpatient ever since. The news we received late that Tuesday evening was the most devastating news that brought me to my knees. At first they didn't know what kind of cancer or tumor she had and gave us several things it could be, all of which were equally devastating.
They did a bone marrow test on May 1st and on the 2nd they said there were blue cells in her bone marrow but they didn't know exactly what it was. On May 3rd the doctors meet with us and told us our baby girl had AML and what treatment would look like. I asked them why would we do treatment here and not somewhere else. They only saw a couple of AML cases a year and I wasn't comfortable with my baby having treatment there. One of my friends cousins connected us with a AML specialist at St. Judes. The quality of life she would have and the state of the art medical technology was exactly what we needed for for her!!
We arrived about 2AM on May 7th. St. Judes was amazing and with wonderful hospitality. They went right to work and they were very informative and thorough. They explained so much and said with AML there are 5 chemotherapy treatments. The first one started May 10th. After the first treatment Cindy was in remission! It took about 5 weeks to do the next round on June 21st. On July 20th Cindy got a fever of 103 and we went inpatient for 23 days. Cindy had fallen off of her scooter a few weeks prior and her wound had become infected. Her body had no defense cells to help her. They ended up having to cut away what was infected, Mucor had gotten in her knee and the only way to get rid of it was to cut it all out. This had complications of its own. They eventually ended up consulting with plastic surgeons and put a donor graft on her knee until we can do a skin graft of her own tissue. Hopefully between rounds 3 and 4. Her counts need to be at their highest for best results and minimum scaring. Her knee could take up to 3 years of PT and additional surgeries to be able to fully bend back, maybe longer.
Cindy is currently on day 62 post 2nd round and her counts are trying to recover and come up for the 3rd round,which should start around September 11th.
"The quilt is SO gorgeous. It's way more beautiful than I imagined, and she absolutely loves it. She made her bed last night with it! She is very proud that it's come from so many different places. Thank you all so very much."
