Maddie’s Marathon with Neuroblastoma

My 2-year-old niece, Maddie, was diagnosed with an inoperable abdominal tumor on May 26th. This type of tumor is called neuroblastoma and is a rare childhood cancer impacting 1 in 800 children.

Maddie hadn’t been her normal feisty self for several weeks but they chalked it up to her likely having mono, as her big sister, Lidia, had recently been diagnosed. But on the morning of Friday, May 26th, Katherine knew something was wrong because Maddie was refusing to walk. A visit to the pediatrician was inconclusive and they were sent directly to the pediatric ER that afternoon.

An ultrasound showed a mass behind her liver and doctors told them they were 99% sure it was cancer, specifically neuroblastoma. A CT scan later that night pretty much confirmed it.

On Saturday, May 27th, Maddie had a lengthy surgery. They did a biopsy of her tumor, they inserted a port for chemo, and they did a bone marrow biopsy. She also had a blood transfusion that night as she had lost a substantial amount of blood in surgery and she was anemic.

The tumor biopsy confirmed neuroblastoma and the bone marrow biopsy was positive for cancer as well.

She had a MIBG scan on Friday 6/2. This is similar to a PET scan but specific to neuroblastoma. The scan showed that it has spread to her tibia and abdominal lymph node. Her official diagnosis is Stage IV, high risk, neuroblastoma. The main tumor is the size of a grapefruit and branches off attaching to the main artery to her kidney, and wraps around her kidney and liver. The hope is that the chemo will shrink it enough so they can remove it.

Maddie will undergo an aggressive treatment regimen for the next 18 months. She is part of a phase 3 clinical study and we are hoping she will be selected to receive the additional treatment being studied. Regardless, she will receive the present regimen which has been shown to be successful.

There are several phases to her treatment which includes:

How support/funds raised will help Maddie’s family:

They are fortunate to have insurance, but it is unclear how much of the cost will be out-of-pocket. Katherine will have to take time off throughout the treatment for chemo sessions and weekly bloodwork, and more. They will need to travel to multiple cities during her treatment, including two separate month-long stays in Rochester, requiring Katherine to take extended time off. And the last 3 rounds of chemo are inpatient so they will need to be in the hospital for them. On a daily basis, there are many unanticipated expenses that come up.

Funds raised will be used to pay for uncovered portions of Maddie’s medical bills, to help offset travel expenses and provide financial relief to Maddie’s family. We hope this fund will help them worry less about bills and focus all their time, strength and energy on Maddie and her treatment.

Any amount will help tremendously.

Maddie is a feisty little girl, but she has a marathon ahead of her. As of today (6/5), she has completed 5 days of chemo. We are so grateful for all the prayers and positive energy friends and family have been sending her. Keep them coming!

If you prefer to donate via check you can mail it to:

Katherine Keyes

24 Western Ave

Delmar, NY 12054