We’re still waiting.
For the result of the second pathology test that was sent to a lab abroad. To hear the rav's final recommendation. - We are told that this may take another week.
In the meantime, to help us pass this time of waiting and to alleviate some of our anxiety, we went today with Ilan to Tel Hashomer Hospital
How should we wait? How should we deal with the anxiety, the fear, the worry? Should we be celebrating or should we be getting ready and making preparations for a very difficult period?
On september 21 the doctors in Shneider Children’s Hospital tell us that the pathology exam of the lymph gland that was taken out of Ilan’s neck shows that he has cancer. Follicular lymphoma, something very rare in children. They recommend starting chemotherapy immediately. We are guided to the hemato-oncology department (I still find it difficult to pronounce these unfamiliar words) where we are immediately signed up and where they do our first intake. Paper work, forms. They take height and weight measurements for Ilan. They take another blood test. And they begin to make appointments for the next steps. Several tests – a heart ultra-sound, chest x-ray, PET-CT. - And an operation, with full anaesthesia, to insert a ‘port’ (a tube that is inserted under the skin in the chest, to make future blood-tests and infusions easy, not needing to pierce the flesh every time), to check the bone-marrow and to give the first chemotherapy treatment directly in the spine. - We are impressed by the efficiency of the doctors and by how serious they are at their work. We are happy to be in such good hands.
In shock, we go along with everything. We are ready to start today. We are ready to stay and to have Ilan interned.
But this day, the 21 of september, is one day before sucoth. This year all the chaguim are in the middle of the week. Many days are either a chag or an ‘erev chag’ (the day before a chag, which is a half work-day) or a friday, which is also a half work-day. There are very few regular work days in the next two weeks. Schools are on vacation as well until after sucoth. Many of the staff, like many other people in the country, are vacationing abroad.
The earliest date they could find to do the operation and to begin treatment was october 3, the sunday immediately following sucoth, some twelve days away. – This is one of the small miracles that happened to us.
We spend the next days absorbing the news. Preparing ourselves to spend the next four months in a marathon of treatments and sickness. We were told that Ilan could not go to school during this time for fear of infections. There will be hospitalizations for the treatments. We were told to expect infections and hospitalizations because of a weakened immune system. And weakness, and nausea, and vomiting, and loss of hair...
How will we live these months? Who will stay with Ilan all the time? Luckily I am out of work! And who will stay with Nathan when we cannot be with him, when we need to be in the hospital with Ilan?
How will Ilan deal with not returning to school after sucoth vacation? Not returning to first grade, that he just started several weeks ago, in a new school, and that he is enjoying so very much? Who will visit him at home during these months? Does he have any friends in his new school yet?
His teacher said that she will come to our house and give him lessons so he doesn’t fall behind!
And how should he separate from his class? Should he simply not return to school from his vacation? Should we postpone the treatment so he can go to school on that same sunday, october 3, the first day after the school vacation, and say good-bye to his classmates? And how should the good-bye be done? Should he talk about the disease? Should the teacher? Should one of us, his parents, be there with him and do the talking? – We ask the doctor and he is willing to ‘allow’ Ilan to leave the hospital for a few hours on monday or tuesday to go and say good-bye to his class. But we must start the treatment on sunday, october 3. You must understand, he says, that Ilan’s disease is a ‘ticking bomb’. We cannot wait.
Friends react. Many people visit and phone and write and offer help – and prayers. People offer to take care of Nathan when we need help. His former male kinder-garden teacher offers to take Nathan whenever we want!
And then, during those twelve days of grace when nobody is working because of the chaguim, not even the rav, we succeed in making contact with him! And through someone on his staff he tells us – pull the hand-brakes! Slow down! You are racing down the ‘castel’ (a steep hill on the road to Jerusalem Tel Hashomer Hospital
The result of that visit to Tel Hashomer and of today’s visit is that the doctors there say – we will probably recommend that no treatment is necessary at this point, only follow-up.
And we are still waiting.
So what do we do now, while we wait?
Do we make plans for a four-month period of chemotherapy in which our life is turned upside down, in which Ilan doesn't go to school and in which we spend our time between his sick-bed at home and the hospital?
Or do we plan for a ‘normal’ four months? Do we sign Ilan up for chugim, that begin now, after the chaguim (after the holidays)? Do we sign Nathan up for chugim, assuming that life will be ‘normal’? Do we continue Ilan’s dental treatment, that was stopped when this whole business started? Do I sign up for a course that I planned on taking? Does Rita sign up for a chug that she has her eye on?
Do I start to look for work seriously? Do I go back to writing fun stories about the boys? Do I start planning the bunk-bed that I want to build for them?
We are still waiting.
But after spending many days in the hospital with Ilan over the past two months, starting with the examinations that led to the operation to remove the gland; and after many tests and many blood-tests and infusions and injection of contrast material into the vein for some tests; after many needles in the vein which make Ilan frightened already from the day before, in expectation, and make him cry every time – now we are mostly just waiting.
And while we wait, Ilan goes to school and plays soccer and goes to judo and goes swimming and rides his bicycle and lives his life almost ‘normally’.
And as we live this everyday miracle, the waiting isn’t only bearable - it’s wonderful!
aba david, 13/10/10
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