Kenzi and her parents, Sharon and Ihab, lived at the Boston Ronald McDonald House while Kenzi received treatment for leukemia. We asked Kenzi’s mom to share her family’s journey with us. It is a privilege to share it with you.
You asked, “What is Kenzi like?” All I can tell you is that she is a very different child today than she was before she was diagnosed. Yes, the basic threads of her personality are still the same—her zest for life, her curiosity, her self-confidence, the pure spirit of what is essentially, Kenzi. Anything less would not have gotten her this far—wouldn’t have gotten us this far. I mean, how many little girls could come out smiling after going through what she’s gone through so far? And bear in mind… our journey isn’t over yet!
The Beginning – from Cairo to Boston
The journey started January 2005, when we moved from our home in Bermuda to Cairo, Egypt. After a month of blissful new beginnings, Kenzi got swollen glands which landed us in the pediatrician’s office which led to a week of blood tests. And then came the shock that would turn our lives upside down—when we heard the unforgettable words, “It looks like leukemia.” Less than 24 hours later, at 4 a.m., Kenzi and I boarded a plane that took us from Cairo to Boston. “We’re going to the best Children’s Hospital in the world,” I explained to Kenzi, “and they will be kind, and gentle, and maybe even fun.”
In Boston, the doctors and nurses were all that I imagined. They confirmed what I already knew—that my young and precious child had leukemia. Strangely enough, I wasn’t afraid to tell Kenzi. I did it in the most honest way I could, using simple terms that could help her understand the nature of her illness—using words like “bad cells” and “strong medicine” and “get your blood back to being healthy.” But telling her about her hair… that was the hard part! Kenzi had seen enough children on 7 West, the oncology unit at Children’s, to know that they had lost their hair through something called “chemotherapy,” and here I was telling her that she, herself, was going to have chemotherapy. I could watch her mind compute and transition within a very short time, ending in a loud wail: “I’m going to lose my hair!” After much soothing and placating, she finally calmed down, and we talked about what was going to happen—although I really had no idea exactly what was going to happen
And it was then we made the first of many “deals” that would help her along the way—that I would shave my head and we would buy her a wig or two, once she was allowed out of the hospital. (In the end, I didn’t need to shave my head but she did buy a wig—though she’s only worn it maybe three times!)
Ihab, my husband, arrived the day that Kenzi’s chemo started. Now we had the added challenge of finding somewhere for us to live, as we both could not stay overnight at the hospital. A lot of people gave a lot of suggestions, but the one that really stuck came from my brother, Derek. “How about the Boston Ronald McDonald House,” he said. I had heard of the Ronald McDonald House, but I didn’t know what or who it was for. It didn’t take long to find out. Luckily they had a room available and we couldn’t have wished for a better place to stay—a real home, with real people, and all the comforts that you could think of or need! A den with a computer! A living room with TV and magazines and books! An enormous kitchen! A laundry room! Oh, and let’s not forget the playroom and TV room downstairs—Kenzi would be thrilled to bits when she came out of the hospital! Janet, the Day Manager, was the first person I met, and her easy, non-judgmental personality convinced me that we had, indeed, found the right place. That was the start of many meaningful relationships with other families, staff and volunteers. There was always someone who was either in the same boat, or had been in the same boat, or could just plain understand. The House gave us the freedom and a base from which we could really concentrate on our daughter’s illness. There were no pressures, no expectations—just love and support and compassion.
Kenzi finally moved to the House after a month of treatment, and within a short time she was calling it home. When she was re-admitted for yet another month of intensive chemo, she couldn’t wait to get back “home.” She loved to follow Janet around and be given “jobs” to do. Otherwise, we might just find her standing in the living room, playing and talking to Richard who was on the other side of the pane, cleaning a window. Or perhaps she was joking around with Mert, asking him endless questions. More often than not, however, she could usually be found sleeping, curled up in (volunteer) Dena’s lap. Somehow, she has sneaked her way into everyone’s hearts, quietly and quickly.
As Kenzi’s initial intensive chemotherapy and radiation came to an end, and she was about to embark on a less aggressive plan which would last for another two years, we had to decide where to live. Neither Bermuda nor Egypt had the specialized medical services Kenzi needed. And while we wanted to stay in Boston, that was not possible—neither of us were able to work in the States, and our insurance coverage wasn’t going to be enough to handle any setbacks, should any arise. In the end, after consulting with the doctors at Children’s Hospital, we decided on Denmark, where my mother lives—convinced because the Director for Leukemia at the Jimmy Fund Clinic personally recommended the doctor who is now in charge of Kenzi’s case. If Dr. Silverman had such faith in the Danish doctor, then there was no question. To Denmark we would go!
[We have now been in Denmark for eight months], and not a day goes by where we don’t think of Boston and the friends we left behind. Although we know it will be a while before we can go back to visit, we are certain that one day, we will. It has not been easy settling in and starting all over again, but there have been many good times and Kenzi has recently started a new school, where she is making new friends.
When asked what she remembers about the Boston Ronald McDonald House, her face lights up—the following sentences came out of her smiling mouth, “Loved it! Good kids. Excellent volunteers. Family barbecues!” As for her favorite memory? “Cuddling and playing with Dena Baby!” One last question begged for an answer—“Where would you like to live once treatment is over?” “Boston!” That’s a wish we’re still working on.
So, going back to my original sentence, how is Kenzi different today? She’s a lot quieter, more gentle, patient, understanding and extremely compassionate. She’s [seven] years old now, and wise beyond her years. She still loves to dress up in pretty clothes and shoes, and put on the makeup and nail polish, but she no longer cares that she has no hair. There are aspects of her childhood that are gone forever, things that she has not been able to do, that time will never give back. Then again, there are things that she has gained too, and for those we will always be grateful—new friends, closer family ties, a million loving moments spent snuggling. Time can’t take those away either.
Kenzi Azab 2016
Here we are in 2016 and it’s 11 years since Kenzi was diagnosed with Mixed Lineage Leukemia (MLL), a rare and aggressive form of the disease. We are beyond happy to report that she is now a healthy, vibrant, happy 18-year-old living in our original home of Bermuda. After continuing treatment in Denmark, living there for 3 years, we returned to Bermuda in 2008, where she could rejoin her beloved family members and friends.
While Kenzi had to drop back a year at school because of all that she missed, it ended up being a natural fit as she was physically and mentally at ease with the slightly younger girls and didn’t feel that she was always having to try to ‘catch up’ to the others. Most of the old friends may have moved on, but she made many new ones – as we expected from our social butterfly. She was still the same empathic, kind and curious child that had first shown her blossoming personality in Boston.
We travel to Boston every July or August for her annual check-up and always come away with good reports and happy hearts, as we usually visit the nurses who can still be found at Boston Children’s Hospital and the Jimmy Fund Clinic. We remained in touch with some of the other families that had been in Boston with us – both at the hospitals and at the Ronald McDonald House. And every Thanksgiving, my brother, without fail, delivers a ham and other goodies to the residents at RMH on our behalf. Kenzi even managed to go with him one year, as she was visiting her friend Lily’s Bat Mitzvah at the time. In her own words in an address to Lily at her party, this is what she had to say:
The day I walked into the Ronald McDonald House I was very sick with leukemia, but I could feel straight away that the people who worked there really wanted me to feel at home. Everyone at the House always had time for me and the other children, and we made a lot of friends because we were all in the same boat. My Mom and Dad had a room at the house while I was in hospital for 2 months and then I came and stayed with them for another 2 months.
I was really impressed that people who we didn’t even know would make food and leave it for us, so there was always something good to eat in the fridge or freezer. I know my parents appreciated that very much too – it made it easier for them to eat something healthy and not have to cook when they got back to the house late at night after staying with me during the day at the hospital.
One thing that I loved about the Ronald McDonald House was that it was completely kid friendly. My favourite room was the playroom just for kids, which had a little room where you could get ice cream whenever you wanted, which I like a lot. I made a lot of new friends there that I could be myself around and not worry what I looked like or what people thought of me.
Living at the Ronald McDonald House is something that I will never forget and I will always have happy memories from there even if I was really sick. I miss my friends and really, really love that Lily and people like her do so much for the people living at the House. I also love that my Uncle Derek always gives them chocolates and other stuff at Thanksgiving on my behalf!
Happy Bat Mitzvah Lily!
From our hearts to your house, we will always be thankful for the love and care that you all showed us at the Ronald McDonald House during one of the hardest periods of our lives.
7 September 2016