Bourdeau family relief fund

Hi, my name is Connie Krahn. I am starting this fundraiser for my God daugher, Elizabeth (Ellie) and her family. She has been through SO much over the past few years, from chemo for an aggressive cancerous tumor, and the fight of her life to beat that illness. We were all so happy when she was better and her hair grew back in, and she could start to live her childhood again. Until recently, she has developed a new illness maybe as a result of the chemotherapy she previously received.

In March of this year, Ellie started having bad leg pains that got increasingly worse. At first we thought she was just acclimating to her PE class and extra activities she was doing, but eventually she got to the point where she was struggling with normal tasks. Where she was once active, taking walks daily, she became unable to even walk home from the school bus. Ellie has a strong dislike of going to the doctor, so when she told us the pain was bad enough that she needed a doctor’s appointment, we knew it was serious.

After a blood count, they found that Ellie had moderate pancytopenia, meaning her hemoglobin, platelets, and white blood cells were all lower than they should be. This caused her doctors to do a bone marrow biopsy, where they discovered she had aplastic anemia, and that her bone marrow was working at less than 5 percent. Aplastic anemia is a bone marrow disorder, which causes low blood counts, which can lead to infection, spontaneous bleeding, and severely low hemoglobin.

Ellie’s numbers were low, but stable, until September. She suddenly started having much more severe pain in her limbs and her blood counts plummeted to critical levels. She became severely neutropenic, meaning that her neutrophils (a type of white blood cell which fights infections) is very low. Her platelets fell to less than 2, putting her at severe risk for spontaneous bleeding and hemorrhaging, and her hemoglobin got down to 4 at it’s lowest, causing her to have a stay in the hospital until her blood counts could be stabilized.

The normal course of treatment for aplastic anemia is a immunosuppressive therapy called ATG, followed by a bone marrow transplant of ATG doesn’t work. Ellie was scheduled for ATG, but at the last moment she tested positive for a direct Coombs test, meaning not only was she not making enough red blood cells, but her body was making antibodies to destroy the red blood cells she was making as well. This caused her doctors to steer towards a different treatment, where she is receiving two types of chemo to suppress her immune system in hopes that it would give her bone marrow time to heal, and also stop her body from making antibodies that destroy her blood cells. She also underwent a procedure called plasmapheresis which removed the blood from her body, separated out her plasma, and replaced it with donor plasma, to essentially “wash” the existing blood destroying antibodies from her blood.

She received this treatment last week, and is still receiving chemotherapy to suppress her immune system. So far her hemoglobin has improved drastically, but her platelets are still low and her neutrophils have dropped lower, and are currently down to 80.

Last night she spiked a fever of 104 degrees and had to be admitted to the pediatric ICU at Randall’s Children’s Hospital. Her blood pressure was very low, and they believe she has a sepsis, a bacterial infection in her blood. She has currently had her blood pressure and temperature stabilized with antibiotics, Tylenol, fluids, and blood pressure medication, and remains in the ICU while we wait for blood cultures to confirm a bacterial infection.

Ellie receives her last chemo infusion on Monday, and in a few weeks they will repeat a bone marrow biopsy to see if her bone marrow is healing. If not, she will continue on to have ATG, and if that isn’t effective after three months, she will have a bone marrow transplant from an unrelated donor on the Be the Match registry. She is fortunate to have many good matches on the registry available.

Through all of this, her dad, Xander, has had to miss a lot of work and the gas going an hour to and from the hospital several times per week has become very expensive. Ellie also has four siblings at home, so while she is in the hospital her parents are commuting back and forth from home (about 60 miles) to be sure they can spend time with their other children, as well as be there in the hospital for Ellie. Her siblings aren’t allowed to visit, because of the Covid precautions in place in the hospital. We appreciate all the prayers we have received in helping to get Ellie better.