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

by Boston Children's Hospital staff on September 1, 2011

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.

Saoirse before diagnosis

That morning Saoirse woke up screaming. When we went in to check on her, she had two black eyes. For three weeks we bounced between our pediatrician, the Emergency Department and various specialists at Children’s Hospital Boston, but no one could tell us what was wrong with our little girl. Finally, on May 6th, 2011 we were hit for a second time with life changing news – Saoirse was diagnosed with stage 4 Neuroblastoma, cancerous tumor that begins in nerve tissue of infants and very young children.

Receiving two cancer diagnoses within months of each other is mind-boggling. It turns your whole world upside down, and you have to use all of your strength to keep from shutting down completely. We knew that we would fight with all of our might to do so, but we were prepared to do whatever it took to win the battle against these diseases. We also knew that sulking wasn’t going to solve anything, so we just kept on being positive and adapting to our new lives. It wasn’t too different from before, our days just so happened to contain many more trips to the doctor’s office than they used to.

Through it all Saoirse’s doctors and nurses at Dana-Farber/Children’s Hospital Cancer Center have been great and we are excited about the aggressive stance they all take on finding a cure for pediatric cancer. Dr. Obeng, Dr. Shusterman and Dr. Janeway have not only gone out of their way to explain everything about our daughter’s treatment, but they follow up with us as well. They truly are the best in their field.  Their commitment to  treating not only Neuroblastoma, but all childhood cancers, gives me a warm feeling in a terrifying situation. Best of all, they understand that when dealing with childhood cancer you don’t just treat the patient, you’re treating the whole family.

Having a child go though chemo is tough, but doing so with a baby who can’t yet communicate is even harder. For my husband Mike and myself it’s become an exercise in behavioral observation. Saoirse has gotten really good at expressing herself with her hands and baby signing, but I’m pretty sure that they haven’t come up with a sign that means, “I need my anti-nausea meds.” There has been a definite learning curve to figure out exactly what she needs and when, and we’ve experienced a fair amount of trial and error while discovering her “cues.”

Having lived through chemo myself made me feel a little bit better when it was Saoirse’s turn to begin the process to treat her childhood cancer. Just having a basic idea of what to expect allowed us to react to her needs so quickly. For me, keeping food in my stomach at all times kept my nausea from escalating, so even when it is hard to get her to eat, we know it’s important that we keep food in Saoirse’s belly. (It’s worth it, even if we do have to shove a few bites at a time into her mouth.)

We also try not to over medicate her, as the side effects from the meds are often more uncomfortable than the problem they’re addressing. Having an idea of what she’s feeling has made it possible for me to help her in a way that many other parents of children with cancer can’t relate to. I can look her in the eye and tell her that I know exactly what she is feeling, and I can, with confidence, know that I’m helping her get through this as comfortably as possible.

Saoirse receives treatment at Dana-Farber/Children’s Hospital Cancer Center

While I’m thankful Saoirse and I can relate to each other during tough times, having two chemo patients living under one roof is hard. Between doctors’ appointments, treatment days, clinic days and blood tests, there doesn’t seem to be time for anything else.

And just because we can relate to each other in terms of treatment, doesn’t mean our experiences are the same. One big difference between my reaction to treatment and Saoirse’s is our post-chemo energy levels. After treatment, I’m a couch potato for three days at least, but she’s ready to run the next day. Being drained all the time does make it harder to focus on her needs sometimes, but having family around has really helped. My parents and sister live close by, and they have been a huge help with the baby and the house, and getting us to and from different appointments.

To help keep the ship running, Mike is on leave from work. He has been a rock for our family and without him picking up the slack around the house I don’t know what we would’ve done. We have also received tons of support from friends, as well as strangers. We are so amazed and appreciative of the donations that have come in – not only monetary ones, but also the meals and fundraisers, as well as the moral support and extra playtime for the baby. We truly know what the phrase “it takes a village” means.

Mike, Saoirse and Kezia refuse to let cancer dim their bright smiles

As we battle on, we feel it’s important to keep a positive attitude. Laughter is the best medicine, so we work hard to laugh and do something fun each and every day. Keeping ourselves active and busy makes us feel normal, and that keeps us grounded. Luckily, Saoirse won’t remember being sick, so we’ll have to tell her about our battles when she’s old enough to understand. I believe knowing what she overcame as a baby will make her a stronger person, which is no small feat because she gets stronger all the time. The motto around our house is “Kicking Cancer’s Butt, One Person at a Time” – we’re doing it so well, we should probably make t-shirts.

 

 

 

Kezia is now in remission, and Saoirse is more than half way through her induction chemotherapy. To read their complete story, learn more about charities supporting famlies dealing with childhood cancer and follow their progress, visit Kezia’s blog: http://newmomnewcancer.blogspot.com.

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