holland cancer feat 88 2.
(photo credit: Courtesy Photo)
'This is how it will look like when the Messiah comes." We are rolling on a bus through the fairy-tale Dutch countryside in which nary a farmstead fails to display its peaceful flock of sheep, but Areleh Rottenberg isn't referring to the prophetic vision of the lion lying with the lamb. Instead, the hassid is describing the close relations among his fellow passengers - an unlikely mix of haredi, national religious and secular couples rendered even more improbable by the blend of wildly diverse educational and social backgrounds - on a four-day tour of the land of canals. But the most egalitarian of blows had blasted through all social categories: Every one of the couples had a child stricken with, or in recent remission from, cancer.
Back in Jerusalem, they attend a support group sponsored by Zichron Menachem, the groundbreaking association for children with cancer and their families, founded 15 years ago by this trip's tour guide, Chaim Ehrental. Ehrental established the association three months after his first-born child Menachem died of the disease at 15, following a 14-year struggle. While all of the various Zichron Menachem support groups are led by a psychologist, Ehrental and his wife, Miri, also attend, supplying refreshments, sharing hard-won expertise and revving up the discussion when a group settles into silence.
At this group's meeting some six weeks earlier, the Ehrentals related that they were planning to scout out new attractions for the next annual summer camp abroad for the sick children. One mother mused aloud about the possibility of the group coming along, and by the next day Ehrental had bought the tickets for his first parents-only trip abroad. The more established members of the group raised money to cover the cost of the charter plane tickets for those who couldn't afford it, while Zichron Menachem picked up the tab for everything else. Out of the 18-couple support group, 11 made the trip.
Even in hip Amsterdam, the group draws curious looks from locals and tourists alike. Boisterous Rottenberg, 43, father of eight and grandfather of three, with his Hell's Angels biker build, full beard and Zichron Menachem Hebrew T-shirt and baseball cap would be a stand-out anywhere; here he's reinforced by his fellow kippa-capped cohorts, most of whom are also clad in the the Zichron T-shirts, blazing with a Jewish star and the motto, "Together, we'll overcome."
Yet no one in the party - religious or otherwise - shows any sign of self-consciousness. No non-observant male ever fails to answer the three-time a day call to fill out the prayer quorum, whether it be at Schiphol Airport, a Dutch roadside parking lot or in the German-border farm field just before flying up, up and away in a hot air balloon.
Neither does anyone in the religious contingent ever comment on the dress code of the others.
On the Disneyland-like boat ride through the Amsterdam canals, just past the long, quiet line waiting to enter Anne Frank House, a group member straightforwardly, with no hint of condescension, corrects a religious member's misconception that the Jewish teenager survived World War II. No eyebrows rise when Ehrental is asked, after pointing out a statue of the personage, who Rembrandt was. Nor can any groans be heard at his unusual explanation: "A painter who, if you owned just one of his paintings, you'd be able to marry off all your children." Not surprisingly, none of Holland's famous art museums - or any museum - are on the itinerary.
The first day also finds the parents at their most boisterous, as they let loose from the tensions of home. The tour bus rocks with the chant that their ill children sing on their Zichron Menachem vacations abroad: "Zam, zam kan, ve'yalla balagan." ("Zam" refers to the initials of Zichron Menachem.) The ringleader of the silliness is Rottenberg, the principal of a heder and a counselor at another school, and pal David.
David, it turns out, is one of the original members of this particular support group that began three years ago - which means that either his child is a more difficult case or has suffered a relapse. And indeed, it turns out his daughter, one of triplets, was stricken at nine by a rare form of cancer that usually attacks only grown women - usually fatally. Her treatment is experimental, and David himself injects her lungs with the medicine, whose immediate side effects are flu-like symptoms.
AT LEAST THE parents know the kids back home are in good hands. Both their healthy and ill ones can stay at the new, state of the art day-care center the Ehrentals established near Shaare Zedek Hospital. A recurrent theme heard among cancer children's parents is that healthy siblings accuse them of neglect for being preoccupied with the ill sibling. The Ehrentals have felt the sting of that charge themselves, and the center in the afternoon and evening offers the same music, computers, art, rocketry, sports, photography and journalism activities, as well as a light supper, to healthy siblings.
Some of the siblings tend to act up at this time of family crisis. One haredi parent tells of an older son who was particularly attached to the girl who fell ill. The 18-year-old boy stopped going to yeshiva and ran up big debts renting cars and taking trips. Only now, some three years into his sister's illness, is he taking himself in hand and working to pay them off.
But it is not only R&R from the relentless pressures of home that the trip provides these stricken parents. That only someone who's undergone the same experience can understand them is a phrase that often comes up, and the tightness of their group gives them strength in their battle for their children.
More surprising is the outright lack of sympathy that they sometimes encounter. One Beit Shemesh vice-principal repeatedly threatens to expel a pupil for showing up too often without the proper uniform, even after the home situation has been brought to her attention. Another mother confides that after years of illness, relatives lose interest, help out less and even take offense when the tired and preoccupied parents express reluctance about hosting them for Shabbat. This overtaxed mother says she telephones the Ehrentals to relay her daughter's CT and other test results before she calls her relatives.
And there are those who look with a jaundiced eye at the care that the Ehrentals lavish on the suffering families.
"Why do the children need to see a hotel room?" Hanni, a petite 25-year-old from the all-haredi town of Kiryat Sefer, recalls being unhelpfully asked by a neighbor about the weekend her whole family took with Zichron Menachem to the Kinneret. "Because they've seen other things," answered Hanni, the third of whose four children was diagnosed with cancer when she was one-and-a-half months old, "The Talmud says that those who are envious of you will also be envious of your sorrows," Hanni relates at dinner in an Amsterdam restaurant, and those at her table nod knowingly.
DIVERSE AS they are, the members of this group do not represent the full spectrum of cancer victims. Among the most stringent of the haredim, only the mothers attend a support group, one only for women. Thursday afternoons at the Zichron Menachem day center are reserved for haredi children only, to spare them from exposure to the Internet and the influence of more worldly children. Yet even these families show up for Zichron Menachem hotel weekends.
The Ehrentals themselves are "modern haredi" in outlook, and their yekke background supplies the German that comes in handy in Holland. Miri, an energetic, sneakered mother figure is ever on the lookout to aid her charges, whether passing out gum for airplane landings and takeoffs or giving a hand to a woman disembarking from a 19th-century-vessel ocean sail that Ehrental booked for the group - his way of making sure that for some two hours at least, all the parents are safe from cellphone contact.
A bitter truism of family crisis is that it can prove fatal to marital relationships. But like the Ehrentals themselves, the couples here seem quite devoted to each other, and marital spats are nearly nonexistent. The explanation I was given by a longtime Zichron Menachem assistant was that these were couples who realized that to get through this they would need professional help. The trip itself provided a chance for the parents to spend time together, far from the fraught dynamics of home.
The Ehrentals try to pack in as many sites and activities as possible in an effort to keep the parents busy and not brooding. But by the third day, one mother whose toddler was still in active treatment was already anxious to get back, and as the others enthusiastically took in Madurodam, the mini-Holland theme park, she and another mother could be spied walking heads together as they compared notes on remedies for the painful side effects of different cancer treatments.
As travelers, the parents are never querulous. They do not complain when the group arrives too late for opening hours at promised sites. Nor they do they express impatience at Ehrental's constant picture-taking. Feeling the need to justify himself nonetheless, he relates that while the children do protest against his constant clicking, the later importance of the pictures outweighs the annoyance. On an one trip there had been a good-looking, albeit bald, 17-year-old boy who so enjoyed being photographed that the other boys would make fun of him. But a week after their return the boy, who turned out to have had AIDS as well as cancer, died, and Ehrental took the many photos of the boy having the time of his life to comfort the parents at the shiva.
On this trip, the results of each day's picture-taking are posted the same evening on the organization's Web site, to the delight of the families back home, many of whom are quick to post back their response.
SOME OF the women in the group - which contained at least three, albeit young, grandmothers - have expressed apprehension about the trip's highlight, a hot-air balloon excursion scheduled for late afternoon of the final day. So it is somewhat disconcerting for this none-too-intrepid reporter to discover that she will be the only one to chicken out of what is repeatedly described as a once in a lifetime opportunity.
"How come you're going up after all?" I ask one mother as her husband supplies her with anti-nausea pills.
"Because they [the group] wouldn't let me refuse," she says.
Or as another mother explains, "Usually I'm scared to go out on a second-floor porch, but being together gives a sense of security."
The women giggle as they crawl on hands and knees into the wicker basket that lies sideways for ballast, while red-hot flames fan out the mammoth balloon. Then the menfolk clamber in, some carrying the Zichron Menachem flags they have been flying on boat trips and planting at picnics.
The contraption gently whisks up into the sky, turns into a dot at 2,000 meters and disappears. The walkie-talkies of the crewmen on the ground sound the now-familiar whoop: "Zam, zam, kan - ve'yalla balagan."