My niece Maeve is a happy, playful 18-month-old who is deeply loved by her family. She was diagnosed in June with a very rare aggressive adrenal gland cancer which only occurs in only an average of 25 children per year in the US. Maeve’s cancer is further complicated because she has a genetic mutation, TP53, that interferes with her ability to suppress tumor growth. The mutation causes Li-Fraumeni Syndrome which predisposes her to additional cancers throughout her lifetime and she will need regular testing to identify future cancers early. This all too young, incredibly brave child is only entering the first stage of what could be a lifelong battle with cancer, or the threat of cancer, due to her increased risk for a wide spectrum of tumors.

Maeve has already endured several surgeries to remove the adrenal tumor, to place a port for her chemotherapy and a G-tube for delivery of medication and nutrition directly into her stomach. She has received the first of eight chemotherapy treatments (5-7 days in the hospital). She also gets four daily doses of mitotane and nutrition through the G-tube administered by her parents. Mitotane will destroy her adrenal glands so she will require hormone replacement for the rest of her life. While in the hospital she gets a chemotherapy that is ototoxic (toxic to the ears) which means she will lose some of her hearing and will require hearing aids in the future. This is so sad to us because she has perfect hearing and loves music and loves to dance. Even if she survives cancer, it will take so much from her but hopefully not her joyful spirit. If she can tolerate the chemotherapy, she has an excellent chance of survival according to her oncologist.

A week after Maeve’s first chemotherapy, we had to rush her back to the hospital because she was vomiting and running a high fever. She was hospitalized for another six days. Her white blood cell counts dropped to zero for several days. She was refusing to eat and drink and was very anxious. She had to be hydrated by IV and fed through the G-tube. The G-tube became irritated and caused her pain, so much so that she didn’t want to be lifted or held or even have her diaper changed. It was so hard to watch and so sad when we couldn’t relieve her distress. We learned from these hospitalizations that it takes two people to care for Maeve when she is in the hospital as it is very hard to entertain an 18-month-old confined to a hospital room. Her father has had to reduce his work hours to be the primary caregiver while her mother must keep her job because she carries the health insurance for the family.

Maeve is not their only responsibility as both parents are needed to take care of their 4 year old son Oliver making this journey even more difficult. The Grandmothers are devoted to helping with the Maeve’s care and trying to keep Oliver’s life as normal as possible but it turns out four caregivers are not enough to deal with all of these hurdles since Maeve’s parents must keep working at least part-time. At this time we are trying to hire additional caregivers to help lighten the burden placed on our family.

We are hoping to raise funds to provide financial help to cover Maeve’s current and future medical expenses; caregiver expenses; and loss of parental income during Maeve’s 8 months of chemotherapy.