There are little buds of hope as we embark on another year.  As much as I have a tendency to look away from this rather artificial change of date, I find myself with some hopes and wishes and a desire to "do" some things a little differently.
I have started a journal in the last few days - thanks to Pinterest and a lady called Hope who writes a blog called besottment, I am enthralled by this lovely and personal art form...  I have never written a diary - this blog is the closest I have ever come, and those of you who come looking to see if I have updated are frequently disappointed I fear.

This journal is somewhat different.  I am using it to remember some things, but mostly to try and pinpoint my thoughts, feelings, loves, hates and ideas about life, the universe and everything. (I have to say I'm hoping for a little more clarity that 42!)  It is coming as an offshoot of therapy, and I am loving the pairing of becoming with creating.  Some pages I will no doubt share here, while others will remain secret.  Kesia has started her own journal and we spend some time journalling together, sticking pretty pictures into our books and using "curly writing" to make our thoughts more beautiful.

After two years of therapy, music is finally beginning to surface.  It is dark, painful, mysterious and as yet I have no idea how to move forward with it, but for the first time in a long time I feel a "want" to pull it out and deal with it.  This "thing" that for so long defined who I was and then defined what I did.  Ironically, "doing" music killed it inside me, and then life battered me and I lost my connection with it.

Ho hum.  Deep dark thoughts late at night...
So tempting to push them back down again!!

Oh!!  Little thought that has completely taken over... I have this wonderful fizz inside of me as I notice that we are developing new punctuation ("we" as a society).  I now have the ability with punctuation togive you an insight into my emotions :).  Without relying so heavily on the exclamation mark, which is just a breath of fresh air! :D.  I can even indicate to you the brilliantly humourous nature of this development :P  I have noticed not only that these little shortcuts to "emoticons" have more and more become used as puntuation in their own right, and probably have no need of a full stop or other mark following them to end a sentence.  How beautiful and lovely that we should now be able to "emote" a sentence so much more clearly than the rather limiting full stop, exclamation mark and question mark :)
No doubt these little symbols are overused, yet I do love ending my sentences with a symbol of my emotions :) :)

So for me this year, there will be much mulling about living and music.  Not always connected, but I fear that necessarily there will be overlap... I face this with some trepidation but with open eyes, beating heart and welcoming mind...

I wish for each one of you the strength to face whatever this year may throw in your path. xxx

it's been such a lovely day!  My little girl is wearing her pretty pink dress (thinking back to her Caring Child Award is always wonderful) and has a beautiful silver watch on a chain around her neck.  It's rather nice to hear her announce the time every few minutes!
Tom has a more relaxed outfit of joggers and t-shirt, but has spent several moments on his new computer.  The special small keyboard is great, and he's even managed to start learning how to touch type!  Thank you dance mat typing !
In Mummy gifts, the fort kits are a resounding success!  Dammit dolls are much loved but need a couple of stitches (not so much experience with that fabric)... experience!  Tom really liked the elastic shooter made from a chopstick and clothes peg, and the little bath and toothcare kits seemed appreciated!  I can't wait to see them in their nightshirts tonight!  Oh... Tom's cuddly toy, complete with long tail and ribbon tags to chew is already well love
Nick was in equal measure tickled and frustrated with his gift!  A calendar with a new envelope to open on the 25th of each month!  Each one contains a task for the month ahead - some easy and enjoyable, others more of a challenge, but leading (I hope) to joy!
I was much loved today - Tom bought me some necklaces and Kesia a beautiful book and a lovely bracelet.  Nick bought me a wireless mouse - very very useful as my laptop one does not work.  A beautiful table lamp to match our new sitting room lamps and a box of little useful boxes that will store all my bits and bobs - just lovely!
As ever, Nick cooked, but the pressure of presents being over meant that we relaxed enough to work well as a team - him cooking and me cleaning!  Tom even ate a yorkshire pudding and roast potato!
And the best Christmas day afternoon... just lazy with a film.
So to face a new year.  There are little things I would like to try and achieve... I am thrilled with the idea of journalling as seen in this lovely lady's blog, and I would also like to find a way to catalogue the wonderful cards sent to us all through PostPals.  I'm thinking a kind of journal too, although the idea of storing things fills me with some anxiety.  Receiving those caring thoughts is so important to us that I need to find some way!  Talking of which, the children were so fortunate to receive presents from their PostPals elves, and some little extras from otherwarm hearted strangers... Lucky, lucky us!

_ Zack:
Fort kit, paper dr who make a tardis, book with a homemade bookmark, dammit doll, toothbrush kit, bath kit, hammock, electronic sign to make with dad, wallet made from fruit juice carton with a tesco voucher, elastic shooter and possibly to come a marble maze.

Kesia:
Fort kit, paperhouses to make, "tangled" paper doll set, nightie, dammit doll, toothbrush kit, bath kit, book with homemade bookmark, knitted scarf, colouring book of family photos, wallet with tesco voucher, elastic shooter and elf application form.

Tom:
Fort kit, fuzzy felt homemade toy, dammit doll, toothbrush kit, bath kit, wallet with tesco voucher, elastic shooter, marble maze, nightshirt, taggie cuddly toy, colouring book with magnet to hang pictures on fridge, elf application form

I think that's it!!  I've been busy making all these little gifts for my lovelies, to

This is quick because in the midst of some lovely and hopeful news, I am reeling from massive miscommunication (once again) with our local CAMHS.

But to Tom...  Feedback was great!!!  The team at GOSH were really pleased with him, and felt that we have worked really hard with him.  The only reservations they had before embarking on an intensive tube weaning programme was the realisation that our family life is stressful and unpredictable.  Given that the programme will be stressful, they wanted to be sure we were ready.

Tom should be starting in the spring, and the programme is in the form of fortnightly clinic visits with a therapist.  There are many professionals involved, but essentially we will be reducing his tube food gradually whilst working on his oral eating.

I will keep you posted on start dates, but I feel hopeful and positive!

So yesterday was a long day.  We four were up at the crack of dawn ready to leave for London as Tom had finally been referred to the Feeding Clinic at GOSH (Great Ormond Street Hospital).  Although the whole family was convened, Zack is still at school, and given his residential status, we all felt that his presence was not essential.  And honestly, given Zack and Kesia's ability to cope with new situations, taking one of them only was a relief.

The first thing I have to say is that rail travel is EXPENSIVE!!!  And my beloved family railcard is useless as you can only use it after 9:30am.  So much money later, we caught our train just in time with dozens of other commuters.  I can only praise Tom and Kesi, for they behaved beautifully.  By the time we reached Clapham Junction, Kes was suffering from the crowd somewhat, but handled herself beautifully.

Once we had had a quick breakfast at the hospital canteen, we headed up to the CAMHS department (child and adolescent mental health services... I normally attend our local one, but the feeding clinic is part of GOSH's CAMHS... you gotta love those acronyms!!).  Funny, despite having been really stressed up to arrival, I went into hospital mum mode:  all practical and coping.  Tom was weighed and measured (sigh, some weight loss), he and Kesia were led to the best hospital playroom you have ever seen:  loads of space, two huge children's tables, a climbing frame, a water play circuit... and that's only what I took in at first glance!  Nick and I shuffled into a distinctly more boring consulting room to begin a two and a half hour interview...

I do cling to some hope that this will turn out to be helpful, but I can't escape the fact that this service deals with behavioural and psychological issues, and that the medical is not their remit.  I am feeling a little sceptical of their ability to open any medical doors needed to help my little boy with the fundamental cause of his feeding problems.

There's not a great deal to say just now about how the interview went.  Two psychologists took copious notes as I answered their questions (Nick did a really good job of corroborating and supporting, despite feeling less than helpful).  They will then hand all this out to various "ologists" and I will be given feedback next Friday.  I find it very difficult to separate the children, and given that this service could do so much to help Kesia, keeping the focus on Tom was difficult for me.  The more hopeful side of me wonders if they will have any advice for me about helping her...

My little girl found the day very hard... being in a strange place was no fun, and she did need to come and check in on us a few times.  To the point that when lunchtime came, she found she was unable to choose anything from the menu...

We chose for her, and I'm glad to say she ate her fish fingers and chips nicely.  Tom actually did very well.  He refused his first plate of food spectacularly (unfamiliar food), hiding uder the table, crying, pushing the plate away etc... and categorically not touching ANY of the food on it.  His second plate (chips) went down really well - some of his best work in fact!  The third of four plates was finger food, with various crisp types, a biscuit and some chocolate buttons.  He was feeling a little off by this time, but did eat the chocolate.  The fourth plate was jelly and ice cream, and he LOVED the jelly.  Gently coaxing was not enough to get him to sample the ice cream however.  Both the kids loved the "magic room"... all we needed to do was wish out loud for something and it would be brought in: salt and vinegar, ketchup, the next course all arrived with oohs and ahhs of glee from Tom and Kesi.  I think we did well, and it was as normal a meal as such a thing can be.  We all had a good giggle when Kesi loudly and clearly asked, "Please could I have a kitten?... NOT cooked!".

After which it was time to go!  A good dose of Aspie stress meant that Nick was feeling quite unwell by this time and we decided against an afternoon outing.  This was confirmed when Kesi just shut down suddenly as we left the hospital.  Crying and complaining of exhaustion, it took all our patience and gentle care to get her to her feet and moving.  We decided to walk back to the station which turned out to be a wonderful decision.  It was a beautiful day, and we all loved the walk across the river, pointing out the well-known buildings.  It must be said that Kesia is very happy to call herself a country girl, and was delighted to get away from the big city with all its loud noises and horrid smells!

So now we wait...  In a week I will go back and listen to what all these "ologists" think and what advice they have to give...  Stress is still intrinsically tied to food here as each meal is a little mountain to climb.  Tom, I do not worry about in spite of everything:  I know that I can keep his health stable and his weight acceptable thanks to the tube.  Kesia worries me so much.  She herself acknowledges that her eating is not good at the moment.  It has become rare for her to bring home an empty lunchbox, and she does not often finish her meals at home.  I will be calling her therapist next week to relay this information and I have spoken to the GP.  I am coming against the usual reaction:  "children do not grow continually, it is normal to have times of lessened eating or growth, don't worry so much, her bmi is in the healthy range...."  My answer (which I could not give in Kesi's presence...): "she has been losing weight since September, she is eating and drinking very little and has only grown a few millimetres since July, her history gives me real cause for concern, bmi is NOT an adequate measure of health for a child at risk of an eating disorder".  I just want to avoid the crisis point which will tip her into anorexia. PLEASE!  I know that food is probably always going to be a point of weakness for her, but we should be able to steer clear of the hellhole that full-blown anorexia is.  Should.  IF the various people helping her listen to me.

So first we deal with Tom, who

_KESIA'S HOME PLAN
DECEMBER 2011

TARGETS AND ACTION PLANS
Step 1
Goal
To help Kesia express her feelings about her chores and still be able to comply with instructions.
Action Plan
Kesia's Mummy will sit with her to design a 5 choice chart to react to an instruction.
The scale will look like this:

1. Deny or swallow our feelings & comply passively
2. Refuse in a rude manner.
3. Withdraw or run away.
4. Avoid complying by use of trickery and manipulation.
5. Make our feelings and decisions known in an respectful manner.

Mum and Dad will label Kesia's action (behaviour) by labelling it as BLUE, ORANGE OR GREEN
BLUE = Shut down, feel bad and do what you are told
ORANGE = Unacceptable behaviour: rude refusal, running away, manipulating or tricking (for example changing the subject or putting blame on someone else)
GREEN = Let Mummy or Daddy know how you feel. Make the difference between your feelings and your actions

Labelling reactions like this should help Kesia to regulate her behaviour and to identify ways of how she can express herself.

Kesia can achieve:
1 tick if she only shows one orange reaction in one day
2 ticks if she shows no orange reactions in one day

When Kesia has achieved 20 accumulative ticks she will move on to Step 2.

Step 2
Goal
To help Kesia express her feelings about her chores and still be able to comply with instructions.
Action Plan
Mum and Dad will label Kesia's action (behaviour) by labelling it as BLUE, ORANGE OR GREEN
Labelling reactions like this should help Kesia to regulate her behaviour and to identify ways of how she can express herself.

Kesia can achieve:
1 tick if she only shows only one orange or blue reaction in one day
2 ticks if she shows no orange or blue reactions in one day

In this step, we are encouraging Kesia to take care of herself and not deny her feelings.
When Kesia has achieved 20 accumulative ticks she will move on to Step 3.

Step 3
Goal
To help Kesia express her feelings about her chores and still be able to comply with instructions.
Action Plan
Mum and Dad will label Kesia's action (behaviour) by labelling it as BLUE, ORANGE OR GREEN

Labelling reactions like this should help Kesia to regulate her behaviour and to identify ways of how she can express herself.
Kesia can achieve:
1 tick if she only shows no orange or blue reactions in one day

In this step, we are encouraging Kesia not to show any blue or orange reactions. We are helping her to express her feelings and yet be able to complete tasks.

When Kesia has achieved 20 accumulative ticks she can get her reward.
REWARD PLAN
Kesia will discuss this with Mummy.


This plan was discussed with me on and I fully understand it and agree to work on it.
Name

Signature

Kesia Symcox

Mummy

Daddy

_ Oh my goodness, I had not realised I was so behind with Tom's updates. I am so sorry because just last week, Kesia and Tom were saying how much they love receiving post from Postpals.

It's been a busy few months, for all the children really. Some of you may know that Zack, Tom's older brother has Asperger syndrome and is at residential school. He is doing well there, but hometime is always difficult. I forward any of his Postpals mail and he absolutely loves it. Kesia is still struggling with extreme anxiety and difficulties around food and school. We need to pursue a statement of special educational needs for her to ensure that she can go to a secondary school that will allow her to thrive. That has taken a lot of our energy and we continue to do all we can to support her and give her opportunities to smile and feel happy.

So, our pal Tom!!! Tom's had quite a hard term so far. He suffered a very bad few weeks of croup and an ear infection that stopped him going to his beloved hydrotherapy... a very unhappy little boy! For a good six weeks he and I spent much of the nights awake with the nebulizer to try and avoid hospital. On the whole he did well, though we did have a couple of midnight trips to our local when his breathing got really bad.

His ear infection proved very resilient so we were seen by ENT a couple of weeks ago. That ear is slowly improving now, but we found out that he has glue ear in the other ear and medium hearning loss. Another thing to monitor...

Some really good news in the midst of all this fairly normal illness was his cardiology review. His heart continues to be stable and the doctor is very happy with him. We are therefore back on to growth hormone injections daily that Tom is managing amazingly well. His beads of courage help him enormously, and he has made a deal with me to earn a special bead once a week as well as his daily black bead (the black beads symbolise a needle). We see the endocrinologist at Christmas, and I am hoping that he will have sorted out the funding for the treatment which has as we speak been rescinded by the Trust... sigh

Our biggest concern continues to be food and growth. Tom became very poorly while he was suffering with croup, and vomiting was a bad problem again. Luckily, we are being seen by the feeding clinic at GOSH this coming Friday. As nervous as I am to have our dysfunctional eating under scrutiny, I am hoping that some answers will eventually come out of it. I have to say I'm also hoping that they may be able to help Kesia who has very different problems with eating.




PostPals keeps making us smile.. The letters from around the world are a source of sheer joy, our regular posters warm my heart especially and the surprises from PostPals (the balloons are still floating around) are wonderful. Thank you so so much.

I have written a note in Kesia's homework diary but I'm not sure that you will see it.  The comprehension homework clearly worried and confused Kesi, but she became very non compliant when it came to do it.
She wrote the title and her name reluctantly, but was unable to answer the first question as the answer was not clearly written in the text.  Although she eventually thought of a couple of answers, she declared herself unable to make a sentence and started throwing the pen across the room.  This happened three times. 
As only 15 minutes had elapsed I tried again to sit her down, calm her and help her think through the question, moving on to the second.
She quickly became angry and frustrated again, and went to leave the room.  I asked her to stay as I was only asking her to make an effort for 30 minutes.  At this point she came to her paper, tore it in half and hit me.
As much as I am willing to help her, and understand the importance of perservering with 30 minutes of homework, I will not tolerate physical aggression.  I sent her to her room, and would like to leave any further action regarding this piece of work in her hand and yours.
Thank you for your understanding,


Kesi is now in her room sobbing.

It's the 26th of September. 2011.  8 years ago, I was blissfully unaware that my little boy was dying of leukaemia.  I had about one month left of innocence.

I, we, won that lottery on Halloween 2003:  "I'm almost certain that your baby has cancer"

We won a better lottery too.  Because 8 years later, that amazing little boy is still with us, and healthy (well, sort of).

I don't grieve daily.  In fact, I can honestly say that i don't often think of Tom's cancer.  But that experience changed me forever.  Because of it, I don't shy away from parents whose children are sick, disabled, in pain, dying, dead.  Because of that experience, I move towards them in the knowledge that so many others will move away.

And I do not apologise for this.  That little baby did nothing but live.  He LIVED!  The wonderment of that lives with me as much as the terror that his impending death did for so long.  I do not want him to grow up ignorant of such a remarkable start to his life.

So childhood cancer lives with me.  In the last three weeks, you could have seen me at school, in the street, at the shop, maybe even on Facebook.  You could have noticed a gold streak in my hair.  You might have thought, "strange", "pretty", "wacky Benedicte".  You might have wondered, "why?".  You did not voice any of those thoughts.

But if you had...

If you had, I would have reached into my bag and given you a little slip of paper.  On it you would have seen the photo of Tom holding aloft a string of 500 beads, with a message:
Tom is funny, silly, naughty.
And a cancer survivor.
Ask me how you can help.

You might have asked.  You might have wanted to know about his Beads of Courage, marvelled in open mouthed horror at the fact that each one of those 500 beads represents a medical even in his life and that he can give you a detailed medical history using them.  You might have asked how you can help, how one person can help all those children suffering, dying from cancer.  You might have expected some trite answer.

I had three.

One:  Give blood.  Kids on cancer treatment need all sorts of blood products.  While you are giving blood, get your mouth swabbed to see if you can be a bone marrow donor.  Tom narrowly avoided a bone marrow transplant and he would have needed a donor - none of us in his family are a match.

Two: It's mercernary, it's flat, it's quite ugly.  Give money.  If you're donating money, think whether you want to further science and research or whether you want to help kids undergoing treatment.  Right now, I'm supporting the Beads of Courage program.

Three:  Send a sick kid a card.  Just a happy card that says, hello.  That tells a joke, that brings a smile to a painful lonely day.  You will not only be making a little boy or girl smile.  That smile spreads - to Mum, Dad, brothers and sisters, nurses and doctors.  Don't know where to start?  Postpals.

Noone asked me.

And a lot of you who follow my Facebook page will have been overwhelmed by the passion of heartbroken parents desperate to effect change.  You will have seen some mothers shave their heads to raise awareness and funds.  You will have been left flummoxed.  That's ok.  You have not lived what we have lived.  But through me, or someone else, now you know.  You cannot pretend this does not happen anymore.

So I did a little thing in the hope of starting a conversation.  It was braver for me than it looked, and that's ok too.  Because tonight, in the face of insomnia, I'm reaching out to all of YOU.

So now, you choose.

Will you give blood, give money, give your time and your love?

Or will you move away from this page feeling bad, open up some new game and forget all about it.  Your choice.

Remember though... if you know a child, Tom included, NOTHING can garantee that that child will not win that lottery again tomorrow.  10 in the UK, 46 in the US.
"Your child has cancer".

This is the time of year when much of what I say makes those in front of me (literally or figuratively) uncomfortable.  When I see or hear their thought bubbles:
"We don't want to hear this."
"But Tom's been well for so long now, when is she going to get past this?"
"Don't scare me"
"Oh no, not again, I heard this last year!"

Not everyone feels this way of course.  And actually, for those that do it's a perfectly natural thought process.  We naturally flee those things which frighten us and which we feel helpless against.  And it's also very easy to feel that we have done our part by sponsoring someone to aid their good cause. 

But...

Today in the UK, ten families heard the words, "Your child has cancer".  Ten pairs of parents went into shock, trying desperately to make sense of those words and their implications.  Ten pairs of parents then tried to hold on to reality as doctors started talking about treatment protocols, experimental treatments, prognosis... Oh prognosis.  As much as we know that numbers have little relevance to our child, we latch on to those numbers.  When they are "good" - 80%, 90% survival rate, we pin all our hopes onto them.  When they are not, we try to ignore them (unsuccessfully) and either prepare for the worst or think that anything higher than 0% is good.

Those ten pairs of parents then went home... some with their child, others leaving him or her in hospital, and then began one of the hardest things: breaking the news.  To grandparents, to siblings...

For us, all of this happened incredibly fast.  We knew something was wrong, but from "failure to thrive" to "leukaemia" is a massive step.  From his admittance to hospital on Friday 31st October 20o3 to his confirmed diagnosis of JMML on the following Monday we lived that process with startling speed.  Just to add a little to the drama, we were living in France at the time, so I had to process the doctors' news and translate it for Nick... time and time again it seemed.

We have been so lucky.

Tom's leukaemia is extraordinarily rare.  The prognosis without bone marrow transplant is normally death.  Simple, stark, true.

By some strange twist of nature, the fact that Tom has Noonan syndrome caused him to have JMML.  It also seems to have enabled his body to halt the cancer in its tracks with only minor chemotherapy to help.

I am keenly aware that my, our cancer journey was remarkably and relatively painless.  No hairloss, no sickness, no radiotherapy, only oral chemotherapy.  Of course, Tom endured a bone marrow aspirate at 11 weeks old with no anaesthesia.  The number of needle pokes is up to around 500 to date (he's 8 years old, so that's about 62 a year).  General anaesthetics are at about 10, though I admit I've lost count.  Mouthwashes were horrendous - four times a day with an anti-fungal I had to wipe his mouth with four separate gauzes.  This for a child who had a gag reflex so sensitive that touching the tip of his tongue would cause him to retch.  I could list many things which to a family untouched by childhood cancer would give nightmares.  To many families who endure it, these are unremarkable, normal facts.  Horrendous yes, but survival requires that we normalise our experiences.

After only one year of oral chemotherapy, Tom was considered well enough to come off treatment.  He was never in a protocol as his leukaemia was so rare and he seemed to be one of a tiny number to stabilise.  Then followed weeks, months and years of simply waiting.  Hoping that he would truly stabilise, dreading that the leukaemia would rear up again, living from one blood test to the next.  Wondering whether the bruises on his legs were leukaemia, or "simply" his platelet dysfunction.  Trying to trust the doctor's optimism, but knowing that the numbers meant that nothing was certain.

Tom is now 8 years old.  I can say that since he was 6, I no longer live in fear.  Tom has given me a couple of scares in those two years, and for a while the dread does return but it is no longer a permanent state.  I can even look at him and think of him as a survivor.

So while I know to the deepest parts of my being that we were absolutely lucky, that Tom's cancer journey was astoundingly simple, no I am not over it.  Nor will I ever be.  I am healed, but scars will always remain.  And every time a child dies from cancer, and every time another child is diagnosed, those scars stretch and sometimes reopen.

Of those ten families today who were told their child has cancer, three of them will have to bury their little boy or girl.

If only there was more funding into childhood cancer, there would be better treatments, there would be more cures.  That is the reality of medicine.  When we fund research, results follow.  And funding follows awareness.

There are things you can do that WILL make a difference.  First, spread awareness.  Make people uncomfortable, teach them what you now know.

Second, sign up to the bone marrow donor register - it is the one "organ" donation you can make with no risk to yourself that WILL save lives.  While you are doing that, become a blood donor.  Children on cancer treatment regularly require transfusions of various types of blood cell.

Third, use a site like POSTPALS to send some post to a child in treatment.