Chanukah this year ...

Ruben became spontaneous quiz master at the Chanukah party on Saturday night; the first time he chose to be noticeable and in the limelight. Even in a onesie. It was great. 

And I'm certain helped it be a very jolly Chanukah at FPS. After ten days of being ill and out of sorts, missing almost the entire last two weeks of school. He rallied onto This Morning's Xmas Party Friday morning and gave a rather poised interview with Philip Schofield.

We're all tired. Rafael is so tired he shouts when anyone talks to him. 

We're in UCLH today to begin cycle 4 of chemo. He's upbeat and delighted to be playing Xbox with his friend on the ward Varun. Last night he woke anxious with anticipation, his chest hurting. He described the feeling of chemo entering his veins. He's so articulate about it. Our GP suggested this whole experience won't hit us until the chemo stops. 

A whole day of waiting until chemo started at 6 pm. And the only time he felt ill frightened was while I had slipped out for a walk and quick rendezvous with my friend Amanda. Ruben slept fitfully after I'd run back. He was uncomfortable and tearful and ate watermelon and crisps to help the evening steroids. 

Still there at 8.35 pm, and with a taxi waiting I ended his FIFA 14 game before its natural finish and then understood how cruel I'd been. Lit the candles at 9.30 pm we're back again tomorrow. 

I don't get it right much of the time. 

Highs and Lows

We just had the most extraordinary weekend of highs and lows. Quiet and early shabbat dinner with Annabel and kids. They loved seeing each other and tasting Julie's cocoa cola chicken. Ruben managed bat mitzvah service and party and special sleepover with g'ma and g'pa, but was in hospital Sunday complaining of sore chest and feeling unwell. Sent home with antibiotics. But poorly through the Janoffs bringing us tea and homemade mince pies and pumpkin loaf from the allotment as they graciously adapted to a change of plan.

But he was back again by evening with a soaring temperature and definite chest infection. He slept there last night. Home tonight. Our plans for a full week at school thwarted again. 

But all this illness and feeling terrible has lost the fear and uncertainty it had before. We can bear it now. 

D and R fed up that their plans and desires sometimes get pushed aside. They're being patient and sweet on the whole. Even though Dora frequently complains; 'it's not fair my brother has cancer...' The full meaning of which  is heavy with complexity. But they still worry about him.

Dora:  'Is it frightening that he has a chest infection?'

Me: No, it's expected.

Dora: Then why the fuss? 

After months of no temperature. The 37.8 Celsius was our sign to get him  to the Whittington. He was particularly vigilant.

I am preparing for Chanukah with a frantic last minute online shop for lots of small bits and one Spurs kit. I feel bad I didn't go for the personalised name now ...

I hope we manage to let the light in, and do a bit of re dedication here at home. Tomorrow's first night seems auspicious. 

Beautiful Scans

On Wednesday we were getting the results of the all important 2 month scans. 

They were beautiful. The cancer has practically been cleared. The comparisons with the initial diagnostic scans were staggering.  The extraordinarily strong chemotherapy is working. Ruben has been so sensitive to it but so has the lymphoma. It was so hugely relieving. My mind has wondered in the small hours to the potential alternative causes for his back and head pain. But it's just been the excruciatingly strong medicine. He'll need three more months of chemotherapy and no radiotherapy. We'll finish treatment in March. We were a little euphoric, and very very grateful to the hospital team, but Ruben has been focusing on the 10 % recurrence rate in the first year. I'm not. We'll work on getting him well, strong and confidant and his hair growing back, of course. We've postponed his Bar Mitzvah until November 21st 2015. All that should have happened by then. 

We'll also work on helping the other two emerge as unscathed from this as possible. I took Rafael to a play therapy session at Chai. He loved it and said 'thank you for having me' as he left. Dora's teacher offered to shave his hair to raise money for Ruben's efforts. Dora and Rafael were very involved. See picture.

It's been a very strange week though, from feelings of euphoria to a tired sadness. Perhaps it's inevitable, after holding things so tautly.

I feel brighter today as we prepare for the concert arranged by Gillian Stern and her orchestra. Barnet Symphony Orchestra are raising funds for Ruben's JustGiving/Ruben-Qassim.

Many people have contributed cakes, music, time and poster design. He's super chuffed and I'm super touched by it all. 

Things in the balance ...

Yesterday I sat watching Ruben in his MRI scan. My first born, still such a baby in so many ways having to lie quietly and immobile inside the long white tube. In all the focus on the minutiae of the illness and its consequences, for that moment the enormity of his dividing cells loomed large. Today it's the PET scan, glucose and radiation pumped into his veins to show how the cancer is thriving. He's restless lying on the bed waiting for it to flow round all his body. 

How did this all happen?

But in all of it I want him, and us to gain and draw goodness and learning from this experience. Even amidst everything. 

Yesterday we had lunch with mum, a break from hospital food. She scooped us up and Ruben eats udon noodle soup, tofu rolls and vegetable katsu curry and frozen yoghurt. The steroids are working furiously. And he's pained by the weight gain, and currently what he'll wear and look like for the bat mitzvah this weekend. Healthy concerns I guess. At home we're still being fed with much love and kindness, paella from A last night, better than any restaurant. It will be strange for everyone to go back to my cooking and not ordering what they like from our friends. 

I haven't talked yet much with others. No parent groups yet or talking to those who've been through it. I will though. Meanwhile at home life continues. I am woken by Rafael asking , what the French Revolution was about. And how much Van Gogh's ear must have hurt. I forgot not to feed Ruben this morning before the scan, both R and D stopped their breakfasts in empathy. 

I'm working more and more and trying to be present and available for the synagogue and initiatives I/ we have begun.  It necessitates holding in and back my personal fears and anxieties. Or translating them into something communicable and useful for others. We're here in the hospital today until 9 pm, arrived at 9 am, chemo starts this afternoon and I'll miss Rabbis Goldstein  and Middleborough presenting their new Jewish Book of Comfort at our synagogue.

I'm sorry as I'm the first in line to need it.  

Week 8

Ruben is feeling better this week.  It's Thursday and he's been in school every day till after lunch. It's such a huge relief. Last Friday he was falling asleep in Mr Quigley's office. (The Head teacher ). This week he's smiling and talking about Picasso's Guernica and Spanish tests.   

He's still funny in his mixture of courage and preciousness in equal measures. 

Ruben: Mummy, my counts ( neutrophils) are dropping, I can feel it.

This is despite evidence to the contrary. The medical teams are amazed at his strength. I think wonderful Marian F has helped with that. Her acupuncture, tapping and moxa treatment have strengthened his very core.

This Shabbat in synagogue we'll read Parashat Toldot. In it is a verse and moment very close to me. Rebekah struggling with her pregnancy, and expressing despair exclaims; 

im ken lamah zeh anokhi v'telech lidrosh et Adonai…Why is this so? And she went to ask God, the only woman to do so. 

I've asked myself this again and again for and because of my Ruben and this new reality I have been catapulted into. 

Rafael woke again last night crying, not he told me because of the scenes of bombs from the film, ( Dad and I took them to The Imitation Game) but for Ruben. Everyone's feeling it.

MRI and PET scan next week. The need for radiotherapy after chemo ends will be determined from them. I feel nervous. It's another milestone in this journey we're on. 

His picc line is blocked again. More hospital visits as I fight for this 'normal life'. But he did show it with pride to his friends; this extraordinary tube burrowing into the crease of his elbow like a helpful white worm. He's swelling a little from the steroids and the chocolate milkshakes that disguise medicine, and it distresses him.

But life goes on.

Rafael has a Capereira tournament, Dora practices her trumpet and rehearses her Rikkud dancing and cheerleading. The latter to accompany her teacher Mr Summer's  sponsored head shave. Last Sunday we cleared Highgate cemetery with fellow congregants for Mitzvah Day. It was beautiful, clear, crisp and very collegial.  Just what we needed.

Neil Baldwin and Happiness

The much anticipated day arrived. Ruben had written to Neil Baldwin after watching Marvellous. He asked to meet him, saying the film had cheered him up on first day of chemotherapy. Neil and others were charmed and Ruben met him at Spurs last Sunday along with several players in the tunnel and on the pitch. But Neil was whom he was excited for. He got given the clown shoes and a Stoke City tracksuit. Ruben tried but was really unwell after an emergency start to Saturday at the Whittington 7 am with debilating back pain. I went onto our AJEX service at Shul and Ruben focused on rallying for his day at White Hart Lane. Neil rang after to chat to his new friend and Ruben was keen to explain his quietness. One symptom abates and another one starts and although it's poor Ruben who's feeling it, we all end up doing so. I've had to go to school twice already today with more medication, different hat etc. but he wants to be there.
He's managed school and even an evening at Shul, seeing everyone. The battle of encouraging does tend to feel endless.
We're through the first two cycles and told definitively that the next four should be much easier. After a hard week of disturbance and lots of help from grandparents, everyone slept though last night, which was a relief. Thought of Grace Paley's poem  It Doesn't Matter If. 

It doesn't matter if you were just born
or if you're dying
you have to sleep at night

then you wake up   the sun
insists no matter what
you turn even in sleep to light
all day will then furiously begin
your children will require bread
you may have to fight...

It does necessitate fighting this. Not the proverbial Cancer fight but in the calling, and encouragement and insistance on this search for health, wellness and happiness.

As We Adjusted

Dora is cross and needing attention. Rafael is in Paris for the night, all grandchildren go with my parents on turning 7. Mum commented on his receptiveness to French culture. Dora muttered; "he's probably saying pret a manger over and over."
Ruben is soul searching now. ' I thought God was my friend...'  Why would I get this. He's angry with God. I read him my sermon for Kol Nidrei. I had spoken about him and my commitment to random suffering and strengthening  oneself to cope.    I wanted an intimacy with the community.   I think he liked it. Rachel Burns visited with home made biscuits and he spoke to her about goodness and deserving pain;
  'I know the Holocaust is bigger than Rubens lymphoma. But ....'   We were touched.  He's working through it. He called the 'Lymphoma Help Line' asking for a buddy. Our specialist nurse found us one. Henry was thirteen and one month when he was diagnosed. Ruben can't wait to to meet. He continues to have less energy for friends and wants adult company.This feels bigger than I've wanted to accept.
My beloved congregant died in the hospice hours before Yom Kippur. Her funeral was very hard for me. As was Rabbi Sheila Shulman's just last week. Beautiful but hard.

I feel at times numb.  But there is much to do. Huge new medication regime. Sometimes as many as 20 pills a day. I'm rarely away from him and at night it's like a new baby, I wait for him to wake and he usually does. I have suspended my own disbelief for the daily ordeals of hospital and sickness, and endless episodes of Modern Family, and Dora and Rafael's sense of neglect. They've taken to sleeping together, 'while Ruben is not so around'. Rafael wakes up distressed regularly, Dora is cross. I try and not talk about him all the time in front of them, but people ask in the playground, at Shul, everywhere and it's so kind. That's another thing the language. I marvel that I'm using words like chemo and flush in my sentences. I used to find abbreviations an affectation, until now, when I have to mention it so often, and can't believe it's in my lexicon like this.
First year without a sukkah for the kids. I should have but couldn't. But we were happy for Simchat Torah. But it was also the day Ruben's hair started to fall out. The preparation doesn't prepare you for this most unnatural occurrence.
I eat the food of friends with continuing gratitude. Fish pie, frittata,cake and soup. Dora asked tonight if I'll ever cook again. But Ruben now is scouring BBC Food, suddenly enthusiastic to cook as the nausea loosens it's grip. So chances are I will. FPS is being so kind and giving me space fom operational management of the synagogue.  I feel a bit quiet and empty at times, but our ongoing connection with and services for the community keep us going in an important way.

Remembering the Beginning

 It's been a Roller coaster ride since 9 th September when lymphoma was spotted in an ultrasound. This ultrasound I had assumed was  unnecessary and worthy of woody Allen hypochondria. But my mother was right, as she often is.  And I often think what if she hadn't insisted on it.
We were told it was then, that it wasn't on our first appointment in the teenage cancer hub. On that day I stood in front of every sign that used the 'c' word. Omar pointed out it was impossible. Every computer, pool table and TV says it very clearly. Then days later it was cancer again and then it wasn't, and finally on Rosh Hashanah, sneaking out from the service before the end, we're told that it is.  Not only that,  but stage IVb. The very worst. In his neck, chest, stomach, spleen, liver and showing in bone marrow. The children are distressed. But calm during the day, even matter of fact.

Rafael: why do the adults keep repeating Ruben will be fine? I know he will.
Me: Maybe we need reassuring.

Treatment started three days later. As I was annoying Ruben, I ran to Anthropologie to look for cupboard knobs. And then to please him and our shared admiration of Neil Baldwin I bought a phone cover emblazoned with 'Happiness.' Is it possible to feel it through all of this?
But many Children on his ward seemed sicker than him. We are still aware of our blessings.
It turn out the smell of coffee bothers him during chemotherapy, so I'll give up coffee. Can I ? Quite a big sacrifice for me. Cake has been hard enough.  Broken nights even when he's not there.
Ruben is too unwell even for foot massages.
The day before it is all confirmed I visit a very dear congregant in hospice, in the last stages and spend time with her family from overseas.we inexpertly cut an apple with a butter knife and smear with honey for Rosh Hashanah. The layered and complicated empathy I feel is almost visceral.
Mum and Dad are there for us. all of us as we begin the logistics that don't bear thinking about.

Ruben offered Modim yesterday because he was so grateful that some of his worse side effects abated.  U'lecha na'eh l'hodot. 
 This is after he had said God was no longer his friend. Theology has disappointed and  Prayer is tricky in the worse moments, much easier to offer when we feel gratitude.  It's been terrible and painful.  And debilitating for him, and us for that matter. During a particular gruelling night, after Chemotherapy this week I missed Rosh Chodesh, and he observed;
"Mummy I think we need a break from each other. It's very hard for you and you need a rest. And so do I ..." He is quite surprising sometimes.

School this week. He was miserable  and lonely for the first two mornings. But my psychological reinforcement from the cafe across the road felt very good for me.! I drank coffee, reconnected with FPS work and felt very liberated. But now he's talked to boys there and left on Wednesday smiling. A very welcome sight.
But very sick again today. It's a roller coaster this.
He has raised £8000 on his Just Giving page for Teenage Cancer Trust. Justgiving.com/Ruben-Qassim/ I have found people's  generosity and support has been extraordinary. He'll be ready soon to post pictures of himself without hair but not yet.

Funny this. They've kept him on the paediatric ward and not in the teenage hub after all. But he's still pleased.and figures his fund raising efforts continue to be worthwhile, even if TCT is not directly caring for Ruben Qassim.
Other two are bearing up. I served Hot Dogs at school fireworks, ( at some personal cost)  so they don't miss out on normal school life, while they drank fanta Orange and spent pounds and pounds on glow sticks.
Dora is so used to eating other people's delicious meals that she ordered what she fancied from Emma on the way back from trapeze. Slightly embarrassing? She scored this week's schnitzel, salmon teryaki, gobbler pie, chicken and masala casserole and Macaroni cheese very highly. As did I. We feel fraudulently at times receiving such kindness.

Second Cycle Begins

Ruben went to Tottenham and sat in a hospitality box and took pictures of salmon and herring and all things Bill Nicholson liked. (They were honouring his ten year anniversary). He and Omar had the best time .   He's been well. We've had one very magical day, playing football in the sun, and buying sandwiches from kenwood. First time in two months. but he's experiencing some strengths And renewal. The chemotherapy is awful for him practically and metaphorically where it grows in power and challenge for him. The clear liquid that runs into his vein takes on symbolic power. Scans in two weeks to discern if radiotherapy will be needed. Today I'm sitting across the road from his school. He's in it and I'm in the cafe opposite. Trying gently to reintegrate him. His doctor insists it's part of his treatment. Which we agree with wholeheartedly but he was and is terrified. It's extraordinary though that he did it. His afternoon relaxation is playing kalookey with his great grandmother. And learning the rudiments of bridge. "You remember I've got cancer, though, don't you" were his parting words. It's a confusing time. Both boys camped out in my room, because no one wants to be alone at the moment. Rafael strokes Ruben's hand as he wakes up. Lovely Sharon visited from the low lands with clog slippers and was allowed a viewing of Ruben without his hat because "she's a mummy". This mummy is tired.

First Post

Our parallel universe continues. I try extremely hard to maintain and even create normality. So we can all connect with the usual world. We went to synagogue today together, sat (mostly) still and together and returned home together unscathed. Great and engaging service led by Rabbi Danny Rich. Then Ruben kind of collapsed whilst I realised the chickens (left in the oven) hadn't cooked and 5 adults and 8 children waited. "You never learn, " he said to me exhausted from the couch. and he's right. This new normal is very hard for me to adapt to.
Eventually the chicken was edible, Ruben ate, slept and returned to us for some table tennis renewed a little.

The children and I all fall in this gap between life that was and will be again, and how it is now.
Ruben feels sick and dizzy and tired so much of the time, even during his break period. And I'm not sure how to help always. He seem to want to be with me... Unless he's watching football on telly as he is now. Then miraculously he's fine.

At 4.20 pm I was telephoned and told Rabbi Sheila Shulman z'l had died. Her lymphoma had returned and in the in the end, it was peaceful and quick. She was something and someone exceedingly special in her generation. But it's not easy hearing of her ( or anyone) dying from lymphoma.