Understanding Illness, Dealing with Death: A Sister's Point of View

2011-06-21T18:07:10Z

I was only 6 years old but I remember so clearly that bump that developed over Ruba's eye and my mother's concern and inquiries over whether my brother or I had hit or dropped her. After a couple of weeks passed without the bump getting smaller my mother consulted a physician. The first told her she was just being an overprotective mommy and that it was just a bump; but mother's intuition is a powerful thing and so despite the doctor's professional medical opinion, my mother saught a second opinion.

When a doctor tells you that your 14 month old daughter has cancer that, in itself, is devastating enough but while hope is thin, it still exists. When a doctor tells you that your daughter has stage four neuroblastoma-which was the second leading killer of children after leukemia-and that you should enjoy whatever time you have left with her because she won't make it to first grade, hope is a distant memory that seems completely out of your reach. I remember that being the first time I saw my father cry. It was one of only two times. Yet, despite all the odds, Ruba was fortunate that my mother somehow was able to hold on to a glimmer of hope.

She fought tirelessly against a monster that ravaged her body for years. Chemotherapy and radiation treatments meant that Ruba spent most of her early years confined to sterile hospital rooms where she, and those around her, always wore masks and gloves. I remember walking the halls of Children's Hospital every weekend. Not only was it my time to see Ruba, it was also when I got to see my mom who had sacrificed her existence to see my sister through her horrible illness.
That was a rough time because although I knew my sister was sick and needed my mom more than my brother and me did, I still felt a void. We didn't have much family here but God had blessed us with wonderful neighbors. Dick and Kathryn were like my grandparents and without them, I don't know how we would have gotten through that difficult time. They picked us up from school, made us lunch, played with us, I am forever indebted to their unwavering show of generosity. But they, too, were committed to making sure Ruba got better.

Ruba did make it to first grade, and second, and third...

She relapsed when she was 9 and had to have her kidney removed. But just like that, Ruba was back on her feet.

We had grown accustomed to the monthly, then bi-yearly check-ups, but Ruba was doing well. She was healthy, excelling in school, and a relatively well-adjusted teenager, all things considered. So after years of good fortune, when Ruba endured a horrible migraine for two days, we learned that she had a brain tumor. We were devastated.

For the next three years Ruba would endure surgery, chemo, radiation. Every time the tumor was extracted it would take no more than six months before it, or a new one, would come back. Finally, in the fall of 2007, after learning that only a month after removing a tumor, that it had come back, faster and more agressively, Ruba made the decision that she was too tired to keep fighting. She decided to leave it in God's hands.

Essentially, Ruba was terminal but what people fail to understand is that we had spent 17 years hearing that Ruba was terminal. We were used to her coming back from the depths of hell. We had become accustomed to Ruba fighting through it. Maybe it was selfish, but I didn't believe that this was the exception.

It all moved so fast. Someone recommended hospice care. At 23, I didn't really understand what hospice care was. I thought it was what older people went on when they were going to die. Ruba wasn't old, and my mind kept telling me that Ruba wasn't going to die either. Nonetheless, we decided to go through with the hospice care. It was the best decision we could have made for ourselves at the time.

I imagined the occasional visit from a nurse who would adjust Ruba's meds accordingly and make sure she was "comfortable" but it turned out to be so much more than that. For the 5-6 months prior to Ruba's death amazing people entered our lives to lessen the burden of what we were about to endure. On a weekly basis, a social worker came into our home and simply spent time with us. We discussed how we were feeling, what we needed, and what was going on in our lives. Essentially, it was in-home therapy.

When Ruba's frail body grew sore from being bed-ridden, Trinity Kid's Hospice Care arranged for a woman to come give her massages for relief. The team of a doctor, nurses, and a social worker became our family. They new the inner workings of our family better than anyone at that time. We went to lunch together, watched movies, started a scrapbook, painted each others' nails. They were our angels.

When Ruba began experiencing more pain and episodes at night, they arranged to have a nurse at our home 24 hours a day. And when it became clear that Ruba was in her final days, Helene, the social worker, contacted local mosques and researched where Ruba could have a proper Muslim burial before presenting me with the information and asking me if I would like her to make the arrangements. Have you any idea what this meant to my family and me?

I found it so refreshing and it genuinely warmed my heart that these "strangers"-none of whom were Muslim or Arab-could come into our home and make a real effort to learn our cultural and religious practices so they could accomodate us as best as they could. They drank our coffee and ate our food-which in all honesty is no difficult feat because it really is that delicious- and they asked questions with a genuine eagerness to understand where we came from. They even put us in touch with an organization that arranged for Ruba, my mom, and my other sister, Nur, to be flown to the Middle East to visit the extended family before Ruba passed. They acted with a cultural sensitivity that I have rarely come in contact with.

They left no stone unturned. They did everything in their power to prepare us for what would be the worst experience of our lives. They were there when Ruba was dying, they were there for that second time my father cried, and they always willingly gave their shoulders for us to cry on.

Essentially, what hospice care gave us was the medical and emotional support we didn't even know we needed in the comfort of our home. Ruba died at home, surrounded by her loved ones, not in a hospital bed while we waited in the waiting room for a doctor to tell us that they couldn't save her. I would have it no other way.

You can imagine my surprise to find that they were there at Ruba's funeral, too. Apparently, I learned, hospice care doesn't end when the patient dies. Our bereaved hearts needed their attention, too, and they were there to provide.

They would come and check up on us every-so-often to see how we were doing. There were regular phone calls because in all reality, no one understood better than they did about what we were going through. Until this day, I regularly keep in touch with Gay Walker, a nurse who has been a support system to me and my family for the past three and a half years.

I don't know what other hospice systems are like, but, if someone were to ask me my opinion on hospice care and I knew they could get the attention and the service that we were provided, I would, without hesitation, insist they choose this method versus hospital care. I'm not sure that I could have adjusted to life without Ruba in any form had I not had that additional support through the worst time of my life.

Death is never easy. And it hurts beyond words. But there are ways to lessen the blow. I am fortunate to have a network of support as a direct result of my hospice care experience. I am writing to you and sharing in your stories and feelings because of my hospice experience. And while I hope to never have to endure the pain of losing another loved one before the ripe old age of 95, I am fortunate to have had the support that I had.

Huda B

Understanding Illness, Dealing with Death: A Sister's Point of View