Menschi's story- an article

The article below appeared in BBJ's(Savannah Shul) weekly torah packet that goes out and was inspired by a shabbos guest.

“Didn't you ever look at your child suffering, and ask yourself 'Where's G-d?'” A Shabbos guest recently asked. Interestingly enough, the question about feelings of abandonment during our most recent nisayon (challenge/test) had actually surfaced the opposite effect. Recognizing again, how very indebted we are to Hakadosh Baruch Hu (the Holy One Blessed be He), arouses within us a desire to share with you how very benevolent our Creator is. Through sharing some personal accounts of this difficult time, you will see how through all of this, He has brought us closer.

After the initial experience of shock, disbelief and sadness over a life threatening diagnosis for our young child, a plan had to be made how we were going to deal with the task that lay ahead. Understanding that the chances of a child being in this situation was less than 1 in 10,000, it was clear to us from the beginning that this was from Hashem. “If He has the power to give it, He has the power to take it away. Statistics, no statistics. Gd is outside of numbers – He either wills it to be one way, or another.” Ain ode milvado. There is no one but Him. So, following this logic, “If Gd gave us this, what are we supposed to do with it?” The answer was not forthcoming, but one thing was for certain --- this was clearly a test, and “throwing in the towel” was not an option.

There were endless medical details that needed attending to, nerves that needed calming, siblings that needed reassuring, insurance issues to be put in order, and quieting of the inner voice that was simply screaming “Don't want this!” Knowing that this was a spiritual test, possibly given to us to atone for wrong choices made in our lives, “guilt” was the next unwelcome guest in this already crowded hospital room of emotions. The calendar said “January,” but we were definitely feeling “Elul.” Personal accounting of wrongs and misdeeds were gone over with fine tooth combs, hoping this spiritual workout would be the “magic elixir” to show HaShem we were serious about change and we didn't need this type of wake up call. Please, spare our son, our baby, who has never sinned in his short life!

“What do you do when you know that everything is riding on you, and yet, never in your life have you felt more ill-equipped to meet this challenge? It's Rosh Hashanah, and Hashem is going to decide what is in store for your future based on who you are right now. Ok, I'm committed to improving myself. I know there have to be changes, but what specifically does He want me to change?? Aren't there any 'Cliff's notes' to doing proper tshuva??”

The doctors were not wasting anytime on hishtadlus (effort) to rid his body of this aggressive cancer. We couldn't afford to waste time on our “spiritual hishtadlus” either. The response to our prayer for Hashem's guidance was clear – “You don't know what to do? So what – it behooves you to do something. If there's something that you can do to heal him, you have to do it.”

What was the “something” we chose to do collectively? To stay focused on the positive. Negative thoughts were a constant companion that needed to constantly be told “Not productive. Go away.” The best way we found to do this was to actively look – and share - our evidence that Gd was “still in the picture.” It was really difficult to do this at first, but as our Sages tell us, “Make for Gd an opening the size of a needle and Hashem will expand it to a large banquet hall.” It soon became impossible not to see Hashem's involvement and it was quite comforting to feel His Presence holding our hands every step of the way.

There were so many chasadim (acts of kindness) done on our behalf, from those who were close to us, to strangers all over the world; unified efforts, individual efforts; there was so much spiritual growth that was inspired by this small little child – who was cognizant of none of this, obviously – the resounding theme of this time period became “mi kamcha yisroel?” Truly, who is like your nation, Hashem?

Just thinking about how many aspects of our situation were in place before we even began this test is mind boggling – like “the refuah before the maakah”. (There is an idea in the Torah that Hashem does not give a challenge without first setting up its solution.)

Before we even knew the diagnosis was cancer, as soon as we knew it was a possibility, we were on the phone with the director from the Southeast Division of Chai Lifeline, an international organization that helps families in these situations navigate their way in this state of turmoil. How were we able to contact this Social Worker so fast (it was Saturday night and normally we couldn't reach anyone before Monday)? How is it we even knew of this organization so well or that there even was a special contingency in this region? Well, knowing that things are not coincidental in HaShem's world, this director “happened” to be none other than our close friend's mother, whom we knew for over 7 years! How did we meet this friend originally? Des Moines, Iowa!!! If this friend hadn't been in Des Moines, and we hadn't been in Des Moines at the same time, we most likely would not have felt this kind of close connection and immediate trust in this person. (How we got to Des Moines is a whole other story in and of itself.)

Furthermore, if it had not been for these very same friends moving to Savannah, we would not have known there was even a position available and worthwhile looking into. Fortunately for us – and we hope the Savannah community feels the same – we have never looked back. We felt immediately “at home” here, and cared for “like family” when both of my parents became suddenly ill within the first few months after our move. Due to these difficulties we experienced, and how supportive the community had been, we knew that whatever uncertainties lay ahead could be managed. Can you see now how Hashem was trying to “buffer” the blow?

Our School was particularly understanding that our focus had to be with our son, was exceedingly flexible with extended absences, and fed my family nightly for over a year. Our neighbors pitched in with carpools and homework and babysitting for over a year. Friends constantly told me of the good deeds being done in the merit of a full recovery. Emergency Tehillim were immediately organized and continue still today. Someone said at one point, “You have to run this race, but we'll be there to pass you the cups of water.” Our family remains truly grateful for the beautiful community in which Hashem has placed us.

We weren't the only ones who He moved seemingly for this purpose. Only two years prior, my sister had moved from New York to Atlanta. We were somewhat familiar with the fame of Oncology in New York and armed with the knowledge that droves of people go to hospitals there, it was difficult to see ourselves going anywhere else. We knew that expertise was one factor, but since this cancer was rare, we wanted a doctor who had handled numerous cases such as this one. We found an oncologist (who was Jewish, no less) who further specialized in Neuroblastoma, and he was based in Atlanta - of all places – and only minutes from my sister's house. This challenge we were faced with of “where to go?” was beginning to become clearer. With the exception of Sloan Kettering, all of the hospitals throughout the US that belong to the Children's Oncology Group follow a protocol for this particular presentation. This was why we chose to have our son treated in Atlanta, since the care was comparable and we had my sister there as a home base. This doctor, by the way, was excellent. Numerous articles have been written on research he has done (and continues to do) to find a cure, and additionally, he presented himself to us as a real mensch. He took a special interest in my son, that I attribute to the kinship Jews feel toward each other, and asked for his Hebrew name so he could daven for him. Not a native to Atlanta himself, he understood my ethnocentric preference towards New York doctors, and explained to me where he felt each had their strengths in light of our current situation. Simultaneously, the way in which we were being treated by the staff was such that we felt secure in staying here for the time being. To this day, it surprises us that we still think of Children's Hospital in Atlanta with warm thoughts despite the traumas experienced there.

As we quickly learned my sister became more than just a home base – she became a crucial arm of the lifeline of support. In addition to creating a blog to help inform everyone of my son's progress, (which she still maintains to this day), my sister made numerous calls to chessed contacts in the area. Instantly, we had frequent hospital visits, meals delivered, a nurse who volunteered to come daily to my sister's house when we weren't admitted and helped me with the shots and dressing changes and IV hookups I needed to give my son. My sister's family (which boasts a few young kids) had to adjust to the changes very quickly and we were fortunate that those shifts in schedules and space were not resented. We really felt the anchor of having family and friends while amidst these turbulent waters.

Although my sister, herself, was somewhat new to the community, we began to discover together the true heart of the Jewish people. We help one another. I know that some people will think that this is an elitist statement, but while it's true that there are Yichidim (extraordinary people that are the exception to the rule), among the greater world out there, you generally do not find this type of supportive community everywhere you go, unless you're Jewish. We began to see this fact and appreciate it the more and more entrenched we were in hospital stays and in different states. We went to Jacksonville for our radiation treatments and there, too, despite being a third of the size of Savannah, the Chessed was astounding.Wherever we went, Gd and His representatives were there. In fact, not only were they there, but of the small contingency of people who could make meals for us in Jacksonville, one of them regularly made food without the same allergens my son had because her kids shared the same ones !!! How do you like that? Hashem knows I'm going to need Challah for Shabbos and the person who regularly bakes challah for the community also has a child with egg allergies!

You want to say that Hashem is not in the picture? What is it then? Coincidence? Personally, I think it's more difficult to believe that all of this is random and we live in a chaotic world than it is to open our eyes and see evidence of His Presence.

One proof reminds us of another that Hashem is here and our ramblings could easily fill tomes. There is one story, however, that stands out as being the most illustrative when it comes to hinting to a broader purpose hidden behind all the pain.

After 6 rounds of chemo, surgery, an additional regimen of high dose chemo preceding a bone marrow transplant and 13 days of radiation, our emaciated little tzaddikel still had scans that showed the presence of cancer. What to do? There was an experiemental treatment that seemed to show success, but was only available in one place in this country – Memorial Sloan Kettering, NY. One problem though. Insurance didn't want to cover it. And how much is being requested in order to begin? $125,000. Delays earlier in treatment due to attempts to get insurance to cover radiation made the urgency to begin this treatment stronger (it had been almost 100 days since he had chemo, and still had cancer roaming unchecked), and legal counsel we sought, pointed out that there wasn't a likelhood we would win this one in the time frame we were given. That left one option. Make the appointment, and the money will just have to come. Just to recap, – we're teachers, not businessmen, and we have never even owned a house, so this amount of money is really foreign to us, and the market had crashed but a month before. Did we mention that all of this basically had to be done in a week? There should be no doubt in anyone's mind that the fact that we got the money we needed for the treatment was clearly an act of GD. There was no way we could do it without Him. We knew that from the beginning. This one spoke to that one and publicized the predicament here and there and strangers from across the globe not only started to wire money but also were inspired to begin davening and growing spiritually. Facebook, blogs, radio, tv all were elevated to tools of a yeshuva (salvation) for my son. Jews unified in a way we had never been witness to in our lives. Someone wrote on our blog, “Your request was made on the 25^th of the month, and like Chanukah, 8 days later there was a story of “maalah min hatevah” (above the natural order of things ) to tell. The details of this story alone could easily fill a book in and of itself. The majority of the monies collected were from individuals, NOT trust funds as you would expect. The visit tracker on our blog read over 1000 people in just 2 days after it had been put on! Can we even begin to comprehend the magnitude of the spiritual effects this urgent situation has motivated?

Why did we merit to be a part of all this? We cannot ever underestimate the power of our tefillos and tzedaka and the actions we take to get closer to a more spiritual life!! What happened next, really drives this point home. In December, 2008, after the doctor at Sloan Kettering had told us we most likely made the wrong choice going to these other places until now, five days of scans showed no trace of cancer anywhere in his body. What changed? Nothing more had been done since the last scan, other than the spiritual upheavals created by innumerable Jews the world over, to get him there.

It really doesn't stop there. Had we gotten different results, we would have questioned the care we received until this point. Hashem gave us the gift of knowing that He guided us to the hospitals he needed to be in. Hashem could have made the scans appear clear before the whole fundraising saga, but the people who were all motivated to do the actions they did wouldn't have occurred either. To this day, we really feel that there is a direct relationship between the spiritual outpouring of that 8 day period and that first set of clean scans that were taken but a month later.

So, now what about the therapy that this money was raised for? The general consensus with this type of cancer is that clean scans do not equal remission. Sloan Kettering believes that cancer can still roam microscopically, undetected, and therefore the antibody therapy can still be effective. What they see as currently 'treating' whatever cancer we don't see, also has shown promise to be effective as prevention. After 6 months of cleans scans, Thank Gd, we are coming closer and closer to believe that the antibody therapy that our son is getting is purely a preventative measure. After the holidays we will be going up to NY again for more scans and possibly treatment.

“How do you sleep at night not knowing what tommorrow will bring?” our guest asks.

Smiling, he gets the response, “Since when am I in charge of our future? If I am not sleeping at night it's because I'm not doing my part of what I'm supposed to be doing – fixing myself. I'll leave tommorrow up to Gd.”

Wishing all of you a kesiva vchasima tova.

May this be a year of much spiritual growth and revealed good!