About this blog

This blog documents the story of our family after our daughter Yasmin was diagnosed with leukaemia when she was two years old, just six weeks after our son Isaac was born. Now, three, Yasmin is on maintenance treatment for acute lymphoblastic leukaemia (ALL) until October 2014. The first post can be found here or you can read how my husband Andrew and I felt when we got the diagnosis and when Yasmin started the most intense phase of treatment. The main purpose of the blog is to raise awareness of childhood leukaemia and its impact on families and to raise money for the different charities that have supported us during the most difficult of times. We have helped to raise £33,000 for charity so far, including £30,000 for Great Ormond Street Children's Hospital where Yasmin is undergoing treatment. Anyone wishing to donate can do so at our JustGiving page HERE. All money raised goes directly to into research, better facilities and care. We are now also raising money for Haven House Children's Hospice where Yasmin has been attending for respite care. You can get more information on Facebook or you can follow me on Twitter here.
The blog and our fundraising efforts regularly feature in national newspapers and magazines while the BBC has covered our fundraising here and ITV here.

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HERE ARE OUR LANGUAGE SETTINGS (more Japanese to follow): EN |  JA

Thursday, 27 November 2014

THE END OF LEUKAEMIA TREATMENT BUT NO END IN SIGHT


Yasmin finished all of her chemotherapy and her treatment for leukaemia on October 31. But due to a number of ongoing issues it does not feel as though we are at the end yet.
The last chemo
Her port is scheduled to come out of her chest on December 10 and we had been hoping for a family escape to the sunshine for Christmas as we have not been able to have a proper holiday away since this began. I was focusing on that as marking a new beginning for us as a ‘normal’ family, without chemotherapy, without Yasmin having a port under her chest, without cancer, without worry.
We had also planned an end of treatment party for December 14.
However, Yasmin's consultant told us two weeks ago that her chest CT scan has revealed tiny flecks. There is no concern that this is cancer but as he is the oncology specialist and isn't sure what it is, Yasmin is now being referred to the chest specialist at Gosh. As Yasmin has had a cough since April which has been diagnosed as a chronic bronchitis, and this persists, there are concerns that the flecks may be a kind of TB that she may have contracted in a swimming pool. We never go swimming due to fears of infection so this can only have happened at our Center Parcs holiday in May.
So at present we are in a kind of limbo waiting to hear what the chest specialist thinks and therefore are expecting the port out operation to be delayed until after Christmas.
In addition, Yasmin has had to have a series of immunoglobulin transfusions. These take all day and her third was this Monday and are extremely unpleasant.
Celebrating the end of chemo with cake!
Despite feeling down about not knowing what is going on, we wanted to mark the end of chemotherapy at least with a little party with just the four of us and we had cake, candles, streamers and dancing.
Of course, it is good that treatment is at an end but as Yasmin is still having other treatments there is no sense of relief yet or a feeling of ‘It's over’.
It feels so unfair to Yasmin after saying ‘we're nearly at the end’ for months to get to the end but it still to be going on and her still having to endure awful procedures.
I made Monday's tranfusions 1000 times worse by accidentally knocking the needle out of her chest which meant she had to be reaccessed again with just cold spray and no anaesthetic cream and the screams of pain were horrific and all my fault.
Yasmin took it all in her stride. Withing minutes of screaming she was happily chatting to the nurse about Frozen.
I've been just too thoroughly fed up with it all to post recently. Just a while ago, I felt I couldn't go on until December 10 which has been our end point for two and a half years. And now we have no end point and this is just going on and on…
I don't want to give the wrong impression. We do not sit around in despair all day long.
Apart from her cough, Yasmin is healthy and running around, enjoying school and ballet classes. I am extremely fortunate to have just spent an incredible week in Tokyo for work and we make most of all the time we have together. 
Shortly after her CT scan - my beautiful wonderful super star
I feel exactly like a counsellor described to me one time - a split existence, a duality of emotion. It is nowhere near as bad as anyone imagines on the surface as you get on with life and laugh and joke. But really you can never put into words the horror of it all and it is far worse than you can ever describe. Both these seemingly opposite feelings occur at the same time. 
A friendly woman who started to chat to me in the hospital playroom the other week told me about her son and then casually asked why we were there. As most friends and acquaintance know about Yasmin, I don't often get to see the look of shock, horror and pity she revealed when I explained it was childhood cancer. Seeing your own pain reflected in the eyes of another was not a experience I want to repeat.
It is amazing how your levels of managing disappointment shift when going through something so prolonged and life changing as this. I certainly don't stress about the small and minor frustrations that seem to send other people into despair. Even the devastation we feel at each setback is short lived. Your brain adjusts and you somehow cope with what you have been given. As my wise cousin Jayne once told me, whenever you feel you can't take anymore, you find some more strength from somewhere to get through it. But almost all of this strength comes from Yasmin and Isaac. Yasmin who goes through so much and never ever complains and Isaac our perfect boy. 
There may be no sunshine but I have booked Disneyland Paris for New Year's Eve. We are lucky compared to many many families.
At present, we are all here. Really, that is all that ever matters.










Tuesday, 21 October 2014

LAST COURSE OF STEROIDS EVER.....FIRST IVIG

Yasmin making a picture with potato prints while having her transfusion
I gave Yasmin her last ever steroids a week ago and immediately burst into tears. I was taken by surprise by the rush of emotion. I obviously needed to cry as I had been holding it all in, but it also brought home how much we've all hated the steroids. Yasmin responded to my tears by laughing while Isaac bit me.
The final course of steroids were horrendous. The steroid monster must have known this was her last appearance as she was particularly bad. Yasmin was weepy, desperately sad and also throwing wild temper tantrums. Yasmin hates wearing socks but steroid monsters hate them even more.
It did not help that I had to take her for her first IVIG  - immunoglobulin therapy last Monday. Having to have scary and painful treatment while on steroids was terrible timing.
She had also been complaining of earache but was hysterical when the doctor tried to examine her ears. The infusion lasted three and a half hours and about half way through she fell asleep in my arms.
She was completely wiped out for the next few days so was unable to go to school. It reminded me of intensification when she used to spend days unable to get off the sofa and looked so skeletal and pale. During the course of steroids, she had to sleep again in our bed. She was calling out 'stop it' in her sleep. On the final day, she was like a newborn baby again crying whenever I tried to put her down. 'Just want mummy cuddles' was her constant refrain.
I took Yasmin into hospital yesterday for her second IVIG only to find out they are once every three weeks not one every week for three weeks. Stressed out and annoyed Yasmin had missed half a day of school for no reason, I burst out crying (this is now becoming a habit!) saying to our favourite nurse: “I can’t take any more of this, I’ve had enough.”
From today, we now have ten more days of oral chemo, two blood tests with the nurse at home, one (the final) lumber puncture for chemo in the spine this Friday, a CT scan next Wednesday to see what is showing on the chest. We should in theory be done by then, but because of having to have the immunoglobulin transfusions – and we don’t know how many more she needs yet – we’re not sure yet when the port will come out. It is scheduled for December 10. And of course, we need to get the all clear from the CT scan. So although everything is supposed to end next Friday we can't relax completely until we know for sure nothing more is needed. The Gods must have decided we haven't been punished enough and they want to hammer us hard in the final furlong...
But the chemo will stop next Friday after two extremely long years and two months…
I have never wished the time to go by during all of this, because I believe life is precious and each moment is a gift, and I know that one day - all too soon - the days when my children were four and two will be gone and I’ll be wishing desperately to hold them again just as they are now. 
But hell, at this moment, I do wish it was December 11 already and we were done with all this forever.

In the meantime, goodbye steroids, goodbye steroid monster...you really will not be missed...

Sunday, 12 October 2014

STUMBLING (AND CRUMBLING) CLOSE TO THE FINISH LINE

At the Cottenham Feast
We have less than four weeks to go until the end of treatment and we should be excitedly planning how we are going to celebrate now. Instead, Andrew and I are almost as stressed as when this nightmare first began.
Yasmin has had a cough since April when she got sick with the adenovirus followed by the chicken pox virus in May. This was entirely preventable as it is NHS protocol that siblings are vaccinated against chickenpox but Gosh failed to tell us this. After Andrew and I were hyper careful with chicken pox and measles for two years cancelling plans, short breaks and keeping her from nursery, Yasmin caught it off her brother.
Since then she has had a cough. I have lost count of how many times I have taken Yasmin into hospital with this cough over the summer. Sometimes she has coughed so hard she has made herself sick and other times she has continued coughing all through the night, even in her sleep.
I have wanted an X-ray on several occasion but each time we have been discharged with antibiotics and doctors saying, "It's the chemo..you’re nearly at the end, the cough will go then. Don't worry." 
Last week, after Yasmin's cough got really bad again I took her in to our local hospital where she immediately spiked a temperature which meant she was started on 48 hours of IV antibiotics. After an entire summer with no overnight admissions, it came as a shock to be having to stay in. You forget how awful it is to stay in hospital night after night when you have not done it for a while. Andrew was away with work for the first two days but my mum came down to help out and even did the night shift!
The junior doctor who examined Yasmin - someone we have never met before as there is very little continuity of care - requested an urgent chest X-ray at around 12. When no one had called us to go after a few hours I inquired what had happened and was told by a nurse it was all in hand. But it wasn't and we were left waiting nine hours - including two sat in X-ray while loads of non-urgent cases went ahead of us. We returned to the ward at 9.40pm...and had virtually no sleep that night.
After that debacle we had to stay in four days while they ran a barrage of tests. The chest X-ray has shown something but they don't know what and we are having a CT scan in a few weeks to investigate further.
Yesterday I was told that Yasmin's immunoglobulin levels are down - this is part of the white blood cells that also fight infection - which might explain why she has had a cough for six months but it also means she has to have four-hour immunoglobulin transfusions every Monday for three or four weeks. This is something unexpected and something we obviously hate our daughter having to go through at this stage, missing lots more school just when we are trying to get her back on track.
So, yes we are worried sick as we don't know what any of this means and it is at times like these that you cannot stop the darkest thoughts from entering your brain.
Yas and Isaac always find lots of games to play
together when it is bedtime

It is a few days since I wrote the above and things are a little clearer now. The doctors believe the patch on her chest is just mucous and they are expecting it to clear in due course. Yasmin has been much better this weekend and we have been to a fun day at the fire station yesterday and to the Cottenham Feast day today. It is two years since we went there last and Yasmin had just started treatment. (Here is Yasmin at the feast two years ago.) She is on steroids and we have just had an horrendous steroid rage as she did not want to get in the bath. But we are comforted by the knowledge that she has two more days of steroids and then we are done with steroids all together. After 24 five-day courses – one five-day course a month for two years – and five solid weeks at the beginning I can say we really have had enough of steroids…..

We still don't have a date for the CT scan and we're not sure if that is going to delay end of treatment yet but we should hopefully get some answers tomorrow.

Tuesday, 7 October 2014

IS TWO THE MOST BEAUTIFUL AGE FOR CHILDREN?

Having brunch with my boy
Isaac is now two and three months and is completely adorable. No longer a baby, he is a confident sociable little boy beginning to assert his independence. He can chat quite competently and is learning new words every day. For Andrew and I, he is an absolute joy and we are also enjoying watching his relationship with his sister develop.
In the last week in August, we passed a final summer holiday in Wales in a beautiful converted barn nestled in the Brecon Beacons where we were able to appreciate breathtaking views in every direction.
The children shared a bedroom for the first time and were very excited to stay up late every night laughing and joking, singing or reading to each other as they snuggled up in each other's beds.
We almost missed this stage completely with our daughter. Yasmin was seriously ill on her second birthday and we celebrated it on children’s ward. The next seven months were spent watching her deteriorate before diagnosis and the start of intense chemotherapy treatment. For six months she was on heavy drugs, in and out of hospital and even now she takes chemotherapy every day.
On holiday in Wales
For most of the year that she was aged two, she was either in tremendous pain, couldn't walk or didn't have the energy to interact. Steroids made her grumpy, chemo made her sick and tired. This means we were not able to just enjoy her natural development – all the pleasures (and normal pains) of a feisty two-year-old becoming a three-year-old in the blink of an eye. We will never know again the child she was unaffected by cancer and its treatment. As a parent I saw her development as a chatty, sociable child arrested. She became another child for a time.
And of course, Isaac’s first year was spent in a whirl of hospital appointments and stress. 

So now, with just a few weeks before the end of treatment, we are enjoying our children and making the most of these precious years. Certainly, I feel that I appreciate more than ever, what we have now - two perfect, delightful (OK we have a fair amount of crying and whinging and fighting too) but two children who like nothing more than to cuddle and be loved. For me, holding my two big babies and breathing in the scent from their skin, listening to their belly laughs and enjoying huge hugs in bed, these are the most beautiful days.

INCREDIBLE STORIES ON SURVIVING CHILDHOOD CANCER

I interviewed a number of survivors of childhood cancer for an article for the Independent’s New Review magazine last month. It was an emotional experience for me, particularly hearing about what the parents of the survivors went through. Childhood cancer was a death sentence for almost all children fifty years ago and was a taboo topic so parents often had to deal with getting their child through treatment with very little support. 
Read my article here.

Tuesday, 16 September 2014

FIVE WAYS YOU CAN SUPPORT FAMILIES THROUGH CANCER

Yasmin and Isaac on Grandad John's tractor

This month is Childhood Cancer Awareness Month. As part of its campaign, I wrote a blog post for Children With Cancer UK which has had a massive response on social media. One lady said, after reading the advice, she cooked a dinner for the family of a neighbour going through chemotherapy who reacted as though she had “given him the world”. I know exactly how this neighbour felt. Little acts of kindness like this can mean everything when you are going through something so traumatic. Just to know that other people care about you, and want to help, makes such a difference.

Here is my post – please share the information. I think it is relevant whatever the illness and whatever the age.
And find out more about how you can support Children With Cancer Awareness Month here.