As told to C. Grossman
It’s incredible how the details remain so indelibly etched in one’s mind. Details, seemingly insignificant details, but they stand out in stark contrast to the dramatic backdrop against which they were played. Indeed, it’s the details of the day that life as I knew it was shattered forever, that have remained so sharp and vivid in my memory. The details of the day my precious daughter was diagnosed with leukemia.
It was Purim. The gaiety and joy of the day permeated the house, but something was wrong, very wrong, with Tehila. As the others excitedly donned their colorful costumes and prepared to go hear the megillah, Tehila retreated to the living room couch. “I don’t feel well,” she mumbled to me. “I don’t want to go to megillah leining.” Just like that. “But Tehila,” I protested, “You’re almost twelve years old! Everyone your age goes to megillah!” “I can’t,” she stated simply. “I just can’t.” The words came out almost inaudibly.
I stopped fiddling with the cellophane paper and ribbons for a moment and looked at her carefully. She looked lethargic and pale as she sat there listlessly on the couch. “Okay,” I conceded. “You stay home and rest. Maybe you’ll feel better later and be able to come with us to deliver Shalach Manos.” But she did not feel better later. If anything, I saw her grow inexplicably more tired and weak. By the time the afternoon came around, I had decided that I would take her to Dr. Shanik first thing the next morning.
Shushan Purim. The school I work in hosts a yearly carnival on Shushan Purim and I usually take my children with me to school for the day. The plan was to pile all the kids into the car, make a stop at Dr. Shanik just to check Tehila out and then continue on to school from there. Little did I know that my world was about to have its bottom sucked out from under it and that, for one thing, I certainly wouldn’t be going to school that day. Or any day thereafter for a very, very long time.
Dr. Shanik took one look at Tehila and called for a nurse. “Do an immediate CBC,” he ordered crisply. At that moment, I knew. I saw the look in Dr. Shanik’s eyes and I just knew. I knew that something was terribly wrong with Tehila, and I even had a suspicion of what it was. I had actually had this intuitive feeling in the preceding days that this was not just a simple virus. I had called the doctor’s office on Erev Purim to voice my concerns and had been reassured not to worry. And now, there was clearly something to worry about.
The results of the blood work were not long in coming. “You have to take Tehila to CHOP,” Dr. Shanik told me. “Immediately.” There. Were my worst fears being confirmed? And then, if there was any wisp of doubt left in my mind, Dr. Shanik’s next words blew them away. “There is something wrong with her bone marrow. You must leave to CHOP within a half hour.” The children were in the car. I had a nursing infant. It was the day after Purim. We were on the way to a carnival. I had to go to work. My world began to spin. We left to CHOP within a half hour.
Tehila was very, very ill when she was diagnosed. Her hemoglobin was so low that she was actually in critical state. Within minutes of our arrival at the ER, the intense flurry of activity began. Nurses and doctors rushed in and out, ordering and carrying out a full battery of tests and procedures. Tehila had to be stabilized and they began transfusing her almost immediately. My husband and I sat there; frozen, shell-shocked. It had all happened so quickly, so bone-jarringly quickly; we couldn’t even absorb the enormity of what was going on.
The definitive results were in just two hours after our arrival. Leukemia. My wonderful, precious, darling daughter, standing just weeks away from her Bas Mitzvah, had leukemia. Would life, as we had always known it, ever be the same again?
We waited for a while in the ER. I sat there, with my very ill daughter at my side, my little infant on my lap. I was numb; from the speed in which things had progressed, from the impact of the devastating diagnosis, from the exhaustion of the day’s events. Presently, they brought us up to Oncology. That was Tehila now. That was us now. We were oncology.
By now, it was late afternoon. Although I couldn’t think of food, honestly, I was famished. We hadn’t brought much along with us and it was many hours since we had eaten. I was feeling weak and dizzy. I glanced at the papers Dr. Shanik had given us. There, at the bottom of the page, was a telephone number. Chai Lifeline: 732-719-1700. My husband called. “We’re coming,” they answered.
Rabbi Sruli Fried, Regional Director of Chai Lifeline, Lakewood, was in our room less than two hours later.
If I have to describe what the arrival of Rabbi Sruli Fried, representing the entire plethora of Chai Lifeline’s services, meant to us at that moment, I would be at a loss for the appropriate metaphor. Perhaps the image of a lifeboat would be fitting. There we were; adrift, thrown headlong into the mighty churning waters of serious illness, floundering, feeling as if we were drowning. And here was Chai Lifeline, coming towards us, offering us a lifeboat, a literal lifeline, in our time of utter distress. The feeling of relief that overcame us at that moment defies description.
Rabbi Fried brought with him a delicious hot supper and for the first time that day, we were able to sit down and try to rest for a few moments. We then spoke with him for several hours. We talked about our fears and our concerns. We talked about how to break the news to Tehila and to the rest of our children. We talked about what was in store and what to expect over the next period of time. Rabbi Fried gave us all the time in the world, and his presence was incredibly comforting and reassuring.
I so clearly remember my emotions then. I had this overwhelming feeling of “Help!” I remember reading the Chai Lifeline articles, the stories of mothers going through the shock of diagnosis as I was now, and I felt exactly as they described. “What’s going to happen to Tehila? What’s going to happen to our family? How will we manage?” Yet, as we spoke with Rabbi Fried that night, I knew the answer. He began outlining for us how Chai Lifeline could be of help and suddenly, I knew that we were in good hands. The hands of the most compassionate and caring of Hashem’s shluchim. We were in the hands of Chai Lifeline Lakewood.
The months that followed were tumultuous ones. We had been cast into a stormy sea and struggled mightily to stay afloat. The leukemia was ruthless, unpredictable. We never knew what would be waiting for us just beyond the bend of the very next moment, but one thing we knew with certainty: Wherever the mighty waves would carry us, Chai Lifeline would be there with their ever-present lifeboat, brimming with love and caring and warmth, and most of all, hope.
On Every Level
And indeed, they’ve been there for us in ways too numerous to count. I’ve been asked, of all they’ve done for our family, what has left the greatest impact. And I’m hard pressed to answer. It’s a difficult question, because they’ve done so, so much. But what I think left the greatest impact on me was their availability to do whatever we needed, whenever we needed, however we needed.
I still marvel at that incredible art of being there for their families on every level. They took care of us in the hospital; they took care of us at home. They took care of our family when I was in the hospital; they took care of our family when I was home. They did everything they could, plus so much more for Tehila, yet never forgot about her siblings, who were going through a traumatic time, too. For me, as the mother and anchor of this family, this meant the world. I knew that I could focus on my daughter’s needs and be there completely and totally for her because Chai Lifeline was there to take care of everything else.
This showering of warmth and care began the very morning after Tehila’s diagnosis. Ms. Naomi Stavsky, a case manager at Chai Lifeline arrived, not just with toys and games, but also with her trademark nesi’as ol and genuine care, love and support. She spent a lot of time with Tehila, who, besides for feeling terribly ill, was scared and bewildered. A volunteer came and decorated Tehila’s room, to take away some that drab, hospital feeling, which meant a great deal because Tehila was not allowed to leave her room for that whole first month. Delicious, fresh hot food was always taken care of, for those of us in the hospital and for my family back home. Reading material, snacks and other necessities were available in the well-stocked Chai Lifeline locker in the hospital and we also made use of the Chai House nearby, which had anything and everything one could possibly need.
It has been said that the only predictable thing about cancer is its unpredictability. Indeed, once Tehila was discharged we had plenty of opportunities to vouch for the truth in that statement. Sudden fevers, unexpected complications and other emergencies all required immediate hospitalization. We’d have to pick up and go to CHOP on a moment’s notice. And yet, on these occasions, I always left with a sense of menuchas hanefesh, knowing that Chai Lifeline would be there with anything I needed. These mad dashes to the hospital often left me without time to gather the barest necessities I would need while there, but I always knew that the Chai Lifeline shuttle would be coming daily and anything I needed from home could be readily sent.
Twice it happened that it was in middle of the night when Tehila suddenly had to be admitted to CHOP. My husband and I were washed upon the shore of complete exhaustion after an intense day of caring for Tehila and it was unsafe for either of us to drive. It was way past midnight, who could I call? Who but Naomi Stavsky, who answered our desperate call in the dead of night?! What precious peace of mind knowing that no matter what would happen, there was a number to call and it would be taken care of!
After Tehila was stabilized and completed the first intense round of treatments, she was able to come home and continue her therapy on an outpatient basis. Although she was home, she was very ill and needed round the clock care. I was responsible for every aspect of her medical care, besides for being the source of emotional support and it was a full time, all consuming job. There was no way I could run the house on top of these responsibilities; the most I could hope for was to just spend a little quality time with my other children here and there.
Chai Lifeline arranged for volunteers to take over every aspect of running my house and caring for my children, so that my energies could be directed towards caring for Tehila and giving my other children some TLC. Never would I have been able to devote myself fully to that for which I was needed most without these incredible volunteers. Chai Lifeline also arranged for daily cleaning help and a volunteer to help out with the morning rush. Additionally, they arranged for a woman to come to us every day for over a year to help in the afternoons and evenings. This was a supreme chessed; one I can never repay.
I often wonder what families who don’t have this crucial line of support and assistance do and I can only conclude that the only way they can cope with such overwhelming circumstances is to break up the family and divide the children until the crisis passes. I shudder when I think of that, and I can only say, humbly and with deep appreciation: It was only because of Chai Lifeline that our family did not have to experience the wrenching trauma of separation. They kept our family together. They kept us whole. They made all the difference.
The Whole Picture
It wasn’t just the practical help. Knowing the toll serious illness takes on a whole family, Chai Lifeline was always there to ease the emotional burden we carried. Events throughout the year meant so much to Tehila and the rest of my children. There were grand parties, Shabbos getaways, fun-filled trips, exciting Sunday workshops and more. We felt as if there was always something exciting to look forward to.
Indeed, one of my sons quipped to me that “every two weeks we get a letter from Chai Lifeline that something is happening!” Besides for all the “official” events, the Chai Lifeline volunteers would show up at just the right times, seemingly for “no reason” at all. “We came to take the kids out,” they’d announce and it would be just what the children – and I – needed. They took them to Bonky’s, to the ice cream store, to Judaica Plaza, to the park; practically anywhere – and gave them a grand time as well as a mega dose of attention and TLC.
The love and attention they lavished upon Tehila was incredible. They would come and entertain her at home as well as take her out when she was up to it. The first summer of her illness I was hesitant to allow Tehila to attend Camp Simcha due to her precarious state. Undaunted, the Chai Lifeline volunteers came and brought Camp Simcha to her! One would hold her feeding tube, another her IV line and they’d proceed to give her the time of her life!
During the school year, Chai Lifeline arranged an ongoing live hook-up for Tehila to her class at school. They installed a video camera in her classroom and provided her with a laptop computer. She was able to follow along with the goings-on at school and this not only helped her keep up with the lessons, but also enabled her not to feel so isolated. Once she got stronger, they also provided a private teacher to come to our house and help Tehila make up the work she missed and keep up with her class.
And then there was Camp Simcha. Ah, Camp Simcha! What should I say? I had heard about “Camp Simcha Magic” but always thought that those words were some fancy PR hype. Let me tell you, they are not. I could never have imagined that it was as good as they say it is – and it was much, much better than that!
Tehila had been ill for so long; she had lost her spark, her love of life. Gone was the happy, carefree daughter I knew, instead a frail, fragile, almost listless, child had taken her place. Camp Simcha gave her back her childhood. Camp Simcha put the smile back on her lips, the sun back on her cheeks and the sparkle back in her eyes. Camp Simcha rekindled her love of life and brought Tehila, as we knew her, back to us. Perhaps a line from the thank you note I sent the camp staff at the end of the summer says it best: “Dear Camp Simcha, I sent you a patient and you sent me back a child.”
Fighting Illness With Love
If I could sum up what Chai Lifeline has meant to us through the two and a half years we’ve been part of their “family”, I would say that it’s that they’ve enabled us to remain a family. They enabled us to carry on when the burden was oh, so heavy. They enabled us to focus on what we needed to do most while they took care of everything else. They enabled us to hope when all seemed so dark and frightening. And most of all, they showed us the deepest and truest meaning of pure chessed and love.
And for all that, we can never repay them.
Please join the Rabbonim and Roshei Yeshiva from our the community as we pay tribute to this crucial mosad on Monday evening, July 20- Tamuz 29 at Bais Faiga Hall by attending and contributing generously.