Support Annie's Fight Against Severe Neutropenia

On February 11th, 2025, Anneliese was taken to the hospital and diagnosed with Flu B. She was sent home. Over the next couple of days, she began to get worse and was having trouble breathing. On February 16th, I took her to urgent care where we were told Annie needed to be taken to the emergency room because of her lab work she had a couple of days prior and the shape she was in. They told me she was neutropenic. Neutropenia was a word that I had never heard of before but soon would never forget.

Neutropenia is a condition characterized by an abnormally low number of neutrophils in the bloodstream. Neutrophils are a type of white blood cell that plays a crucial role in the body's immune system by fighting off bacterial and fungal infections. Neutropenia is typically defined as an absolute neutrophil count (ANC) of less than 1,500 cells per microliter.

Annie spent a couple of days in the hospital on oxygen and IV antibiotics. Her ANC was in the 200s. We were told she was neutropenic because of the flu and it would just take time for her body to get healthy. We were released; however, Annie was not allowed to return to school or dance because she was at a high risk for infection. Something in my mom gut told me the doctors were wrong. I was told to follow up with oncology/hematology in a couple of days just to repeat blood work and then she would be able to return to school.

I decided to get a second opinion and we went to Rainbow Babies & Children's in Cleveland. There we met Dr. Hackney. She was great with Annie and listened to my every concern. We were told it could possibly be autoimmune related or really just from the flu. We got more blood work and Annie's levels had come up enough she could return to school with precautions and good hand washing. We were relieved and thought that was the end of the health scare. Unfortunately, it was far from over.

Dr. Hackney wanted to repeat blood work in a couple of weeks just to make sure everything had gone up.

Fast forward to those couple of weeks. Annie went for a routine cleaning at the dentist. The dentist noticed Annie's gums were bleeding and swollen. She was very concerned and asked me if Annie was on any medication or had any medical issues. My heart sank and I began to cry, expressing to her that Annie had been having issues with her blood work and possibly had an autoimmune disorder. She said that explains a lot. Annie's gums were in really bad shape. The dentist told us she felt confident once she was treated for whatever was going on, her gums would fix themselves.

I emailed Dr. Hackney and let her know and got the blood work done. When we got the blood work, Dr. Hackney called me right away and told me Annie's ANC and WBC had dropped. This was on a Monday. On Wednesday, April 23rd, we were making the trip to Cleveland to see her. At this appointment, she ran a bunch of tests to check for multiple things from leukemia to autoimmune diseases and even ran a genetic panel. When the CBC came back, Annie's levels were even lower than they were on that Monday. We were told Annie had no immune system to fight a bacterial infection and was considered critical. If she got a fever of 100.4, she was to go to the nearest emergency room. Annie began to wear a mask to school and in public to help her from catching something.

A couple of days later, more blood work returned and Annie had tested positive for antibodies, which means her body had formed antibodies that were fighting her body and killing almost all of her neutrophils. She was diagnosed with severe autoimmune neutropenia.

On May 1st, Annie went to the rheumatologist to see if there was an underlying reason for this diagnosis but there was not.

On May 2nd, it was decided that Annie would get a bone marrow biopsy to completely rule out cancer and to get her started on an injection medication called Neupogen. This would help stimulate her bone marrow and would help raise her counts enough that the antibodies wouldn't be able to destroy them all.

On May 12th, Annie went to Cleveland to get the bone marrow biopsy. She was sedated for the procedure but did absolutely amazing and was such a strong little girl! It was decided that if the bone marrow came back good, Annie would start Neupogen on Thursday, May 22nd. We had an appointment that day to go over results and I would also learn how to administer the injection to Annie at home.

On May 14th, Annie turned 6! She went to school and got to celebrate with her teacher and classmates and then came home and we had cake and celebrated her some more. About 6:30 PM, Annie became very whiny, complaining of her back hurting and had the chills. I took her temp and it was 100.4. I was advised by her doctor to take her to the nearest emergency room and she would call and tell them we were on our way. We went to Akron Children's in Boardman. We were instantly brought to a room and blood work was drawn and IV antibiotics started. Annie's ANC was 50 and her WBC was 1.9. She was transferred to Cleveland and admitted. The doctors decided to start Neupogen earlier than expected given the circumstances. Annie has been given 3 injections of Neupogen and has been tolerating it pretty well. As of Friday, May 16th, we are still in the hospital.

Unfortunately, being a mom of 4, the financial strain has hit. Traveling to and from Cleveland multiple times. Every appointment Annie has to go to, I have had to miss work. I have been out of sick days. I carry the insurance for her and the co-pays and medical bills are adding up. Her injection medicine alone is astronomical even with my insurance. I have applied for help through the manufacturer.

This money would help ease the financial strain we are experiencing on Annie's journey. Any amount would be greatly appreciated. ♥️

❌️⭕️

Maci