Stories about: Dana-Farber/Children’s Hospital Cancer Center

Changing Shape

Maryam and her parents

Born in Baghdad in 2002 without access to advanced medical care, Maryam Idan stood little chance of receiving anything more than the most basic treatment for her sickle cell disease (SCD). By the time Maryam was a baby, her parents, Basim and Janin Al-Zoubaidi, had already lost three of their children to the blood disorder, so they knew the condition’s telltale signs. “When she started showing the same symptoms as her siblings, we immediately thought the worst,” says her father. “We knew there was treatment in America, but we had no idea if we would have the means to get there.”

An inherited disease, SCD causes a child’s red blood cells to malform and become stiff, taking on the shape of a sickle, like the letter C. These abnormally shaped blood cells can stick together and interrupt healthy blood flow throughout the body. This can cause a host of problems that can affect nearly every major organ, but it affects every patient differently. “Some kids don’t have pain or complications until they’re teens, while others suffer strokes and extreme pain and need blood transfusions when they are very young,” says Leslie Lehmann MD, director of the Stem Cell Transplant Program at Dana-Farber/Children’s Hospital Cancer Center (DFCHCC).

Like Maryam, most kids with SCD experience breathlessness, delayed growth, extreme fatigue and pain in their bones from the time they’re young. Kids with SCD also have weaker immune systems, making them susceptible to infections, and they’re at a greater risk for strokes, blindness and fatal iron-overload—another dangerous blood complication. In developed nations, where symptoms can be treated with medication, patients often still only survive until their late 40s. For patients like Maryam in developing countries, even the most basic treatment for these symptoms isn’t usually available, and death at a young age is very common.

The only cure for SCD is a stem cell transplant when the patient is young, similar to a treatment that someone with cancer would undergo. It involves the complete destruction of the immune system (as well as the sickle cells) through chemotherapy, then rebuilding the person’s immune system using healthy stem cells from a matched donor.

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Treating childhood cancer: The apple doesn’t fall far from the tree

Kezia Fitzgerald is a new mother. She’s also a recent cancer survivor and mom to a daughter currently battling childhood cancer.

Saoirse and Kezia at Dana-Farber/Children’s Hospital Cancer Center

As the parent of a sick child, all you want is for your baby to get better. You focus all of your attention on healing and caring for her needs, and if possible you’d give all of your health to make her feel better. But what happens when the parent is battling just as hard as the child to get healthy?

In January of 2011 our family was hit with the hardest news we thought we could ever receive – I was diagnosed with stage 3 Hodgkin Lymphoma. Along with being afraid for my health, I was terrified that I wouldn’t be able to fully care for my child. I loved my new life as a stay at home mom, and I hated the though of not being able to give 100 percent of myself to my daughter Saoirse as a result of cancer. After weeks of tests and scans, I quickly weaned my 8-month-old baby off breast milk and began chemotherapy. Luckily for me, I had minimal side effects, and with the help of family and friends, Saoirse got all the love and attention that she could have ever wanted.

(check out CNN coverage of the Fitzgerald’s story by visiting their website.)

Pretty soon the word “normal” took on a new meaning in our lives. We got used to our routine of tests and doctor appointments and patiently waited for a time when it would all be done. Always a happy and playful child, Saoirse was becoming more and more independent, which made it easier for me, as I was losing more and more energy.

However, one day in April, our fun loving, happy baby changed completely.

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