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.

Language Settings

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

Sunday, 31 March 2013

HAPPY EASTER





Happy Easter Weekend to everyone!

Saturday, 30 March 2013

NOMINATE US FOR THE BRILLIANCE IN BLOGGING AWARDS

NOMINATE ME BiB 2013 FRESH VOICE

If you have enjoyed reading this blog please take a few minutes to nominate Our Life with Leukaemia in the BritMums Brilliance in Blogging Awards.
All of the information on how to do it is here. There are lots of different categories to choose from. But you are able to nominate the same blog in lots of different categories so feel free to enter Our Life with Leukaemia in more than one, including in the photos category to showcase Andrew's outstanding pictures!
NOMINATE ME BiB 2013 WRITER
If we make it into the final it will help to raise the profile of the blog, creating greater awareness of childhood cancer and aid our fundraising – our total is now up to £25,000 raised for Great Ormond Street.
It will also mean I get to go to the swanky awards do in June!
You have until April 12 to get nominating. Many thanks.
NOMINATE ME BiB 2013 OUTSTANDING

Thursday, 21 March 2013

ACCIDENTAL LINE DISLODGMENT - OUCH!



Like father, like daughter:
Yasmin getting to grips with her camera
There are times when I look at my daughter and I am amazed at how resilient she is in the face of all that is thrown at her. Plucking her out of her warm bed at 6.30am last Friday to drive her to GOSH for a lumber puncture, I whispered: “Go to sleep in the car.” I expected her to be grumpy after a disturbed night due to Isaac’s teething and everyone in the house suffering from colds and coughs, 
But instead, I was greeted by the sight of my beautiful daughter, her ears poking jauntily from beneath her French beret, singing and laughing to the radio, shouting: “Turn it up mummy.” On a rain-sodden morning, after a horrendous bout of stress-induced insomnia, this immediately gladdened my heart.
The trip to GOSH came at the end of a horrendous week which began with Yasmin’s emergency trip to our local hospital with a high temperature on Mother’s Day and culminated in her central line being accidentally ripped from her chest last Wednesday evening as my brother picked her up to say goodbye.
When Yasmin’s port was first fitted (see pictures here), we were told by one nurse: “I have never heard of an incident when the line is pulled out. Children are very quick to learn not to pull on them.”
Therefore, it is something we never expected to happen and only had a vague idea of the consequences when it did.
The needle is quite long and hooks into the port, which is under the skin. Every week, Yasmin has her port accessed for her blood tests and if she is due to have more treatment that week, we will leave her accessed. It is such a scary experience for her still to be accessed and de-accessed by the nurse, with all the correct preparation and procedure, so to have the needle torn from her chest was not only incredibly painful but a massive shock to everyone. She screamed out in agony: “Uncle Shaun has hurt me.” Although it was a complete accident, Shaun was, understandably, horrified by what he had inadvertently done.
I examined Yasmin's wiggly and saw blood in the line which made me investigate further until I saw, with alarm, the line had come all the way out.
Immediately, Andrew bundled Yasmin into the car and took her to our local hospital while I googled what the consequences could be, before calling our community nursing team for more sensible information. The nurse calmed me down and explained that this can happen and that Yasmin may need an X-ray to check that the whole needle has come out and the port will need to be thoroughly assessed.
I was very surprised, therefore, when Andrew and Yasmin arrived home a short while later saying everything was ok. “Are you sure?” I couldn't believe it.
A nurse from GOSH called the next day to discuss Yasmin’s chemotherapy and I explained what had happened with the line. She asked whether the port had been accessed again to check that it was working and when I replied it hadn't been, she said we would have to go straight back to hospital to check that it was working. It had been an oversight on the part of the nurse the previous evening not to make sure that all was as it should be.
This caused several hours more stress as I worried whether the port had been moved, and whether it would mean another operation and a delay in Yasmin's treatment. But in the end our community nurse came to the house and accessed the port and all was fine.
Two days later and we were back at GOSH for her lumber puncture.  This trip involved even more tension, as due to Yasmin suffering from a severe cold, there was a chance that her operation would be cancelled and we would have travelled all that way for nothing. But the anaesthetist deemed Yasmin's chest was clear enough to go ahead.
This was not the end of our hospital trips! I spent three hours back at the local with Yasmin and Isaac on Tuesday after her cold developed a nasty cough which had to be checked. This meant nursery was cancelled this week.
For parents reading this who may have had to rush their child to A and E once or twice already: I'm sure you will never forget the journey in and the feeling of your heart almost stopping and the difficulty you had in breathing. Now, imagine that happening once or twice a week, every week - which has almost been the case for us over the past 8 months. In the past fortnight alone, we have had three hospital dashes as well as one scheduled appointment for chemo and three visits from the community nurse.
No matter. We are off on Saturday for our first family holiday with Isaac. We are all full of colds and the weather forecast for Devon is lousy but the four of us will have seven whole days together and I have never needed a trip away so desperately in my life.  Bring it on. 

Tuesday, 19 March 2013

FINALISTS IN SWAN UK BLOG POST AWARDS

SWAN powerful blog post award

We are hugely excited to announce that Our Life with Leukaemia has made the final of the Swan UK Blog Post Awards in the Most Powerful Post category.
The successful post is this one written when Yasmin was suffering from the effects of heavy chemotherapy treatment while many British children were enjoying snow.
You can read more about the awards and the judging panel here.
The winners will be announced on April 13 to coincide with Undiagnosed Children’s Awareness Day. We will keep you posted!

Monday, 18 March 2013

NEIGHBOURS CLIMB MT KILIMANJARO RAISING £3000 FOR GOSH



A group of intrepid travellers, inspired by Yasmin’s story, have claimed Mount Kilimanjaro raising £3,000 for Great Ormond Street hospital.
Estelle Vandecasteele, who lives close to our home in Woodford Green, trekked and camped on the highest mountain of Africa over New Year, with her husband Thomas and three friends, 
Jean-Baptise Théard,  Benoit Clere and Stephanie Pau.
Estelle said that when she heard the news about Yasmin she was "overwhelmed and heart broken" and wanted to do something to show that she cared.
"Having two kids of approximately the same age as Yasmin and Isaac and living nearby made us feel very sensitive to the whole thing. I think at this point we felt that it could be something that happens to anyone at any time and this seemed so unfair. We felt how hard it must be for them to cope with this sudden and brutal change in their lives."
Stephanie adds: “ The amount we have raised is tiny for research, but if there are more people trying to raise tiny amount of funds, it can sum up to a significant contribution. We hope the money raised will contribute to keep the research effort going, hopefully to arrive at a cure in time for the children who need them.”
Estelle says that the adventure was certainly a huge challenge.
"On summit day, I did not realise that Gillman’s point was so far away and felt like I would never reach that point. We had a break midway through but for some reason, I did not realise we still had two to three hours to climb before reaching Gillman’s point. I was expecting to always arrive in 30 minutes or so but we always had to keep on walking. The path was rocky and we were lacking oxygen so we were forced to walk extra slowly, it seemed like an eternity…"
Stephanie adds: "The most difficult part of the climb was the physical discomfort, the combination of a persistent headache, wetness and coldness. But it reminds me how fortunate it is to have good health and how comfortable we live, most importantly, to have the awareness to appreciate these simple things in life that most people take for granted."
Thank you Team Kilimanjaro for your amazing challenge and for raising such a huge amount for GOSH! 


Thursday, 14 March 2013

CHARITY FUNDRAISING REACHES £25,000


Yasmin having fun in her playroom at home
Yasmin has made the papers again with the news that she is on the road to recovery and that our fundraising total has reached the massive heights of £25,000. All of the money raised goes directly to Great Ormond Street Children’s Hospital so that they can continue their pioneering work in research and provide the best care possible for children like Yasmin.
You can read the latest news reports here and here.
Andrew and I would like to take this opportunity to thank our family, our many friends, colleagues, and blog readers for their huge generosity as well as personal support at the most stressful time in our lives. We have had donations from as far afield as Abu Dhabi and Japan, Australia and Germany and all over the UK. There are also a number of people who have been invaluable in everything from helping with childcare, entertaining the children and helping me deal with the loneliness of caring for a very sick child.
We are continuing our efforts and hope to be involved in more events later in the year, such as the photography auction which raised more than £10,000. If you would like to organise your own activity in order to fundraise for Great Ormond Street, do get in touch. You can either pay money raised straight onto our page which goes directly to the GOSH charity or you can set up your own JustGiving Page with links to the blog and GOSH can then link your total to ours.
Happy Fundraising!

Wednesday, 13 March 2013

STARTING NURSERY


Receiving Mother's Day Flowers after Yasmin spent night and day at hospital
following late night dash
Three days into maintenance and Yasmin started nursery two mornings a week. In preparation, an outreach nurse visited to discuss Yasmin's health and any issues that may arise with the staff. In addition, a letter has been sent to every parent informing them that a child with leukaemia is attending and to ask them to keep their child away if they have chicken pox or measles - both life-threatening conditions for Yasmin.
Andrew and I were aware that starting nursery would undoubtedly lead to a host of infections and hospital visits. She had remained well for the previous six weeks as she had effectively been in quarantine. But as parents we have been advised to try and get our lives back to as normal as possible now Yasmin is on maintenance.
Yasmin did not go to nursery when she was younger as I managed to fit my freelance work around caring for her and she had a wonderful childminder she went to two days a week. But she has been eager to start nursery for a while now. I do know that if she had started as planned last September, with no interruption due to cancer, our confidant, sociable little girl would have fitted in with relatively little stress.
As it is, we started her settling week while she was on steroids. Maybe not our brightest idea! But she has been delayed so much and she is happier out of the house when on steroids than cooped up indoors. 
The first day, our daughter excitedly packed her bag and was in a hurry to get "to school". Isaac and I remained with Yasmin for the first two days when we only spent an hour there and it was a big success. Yasmin had been a nightmare at home with her steroid induced grumpiness but once at the nursery she calmed down. She clung to me for the first half hour but by the second day she ran happily off into the garden holding hands with a new friend. The sight made me catch my breath. Yasmin has not had the opportunity to make new playmates own age before, except the children of our friends.
She loved playing in the garden and looked like any normal child, laughing as she attempted to skip or learn how to play hopscotch. The only difference was her bald head shining in the sunlight. She still looks so vulnerable, marked out by the effects of her treatment. 
The third day was more difficult as I had to leave Yasmin at the nursery for an hour and I was informed on my return that she had cried for most of the time. This of course made me question whether we were doing the right thing.
But by the Friday, when Andrew took her in, she was more settled, taking an interest in the younger babies there and happily eating her lunch with the other kids.
The same Friday, I had a day away from the children to attend the Women of the World conference at the South Bank. I had been looking forward to it for ages but by the afternoon, I was feeling sick and I had to leave early. Speaking to my friend Becky, who I had gone with, I broke down in tears. Despite the fact that Yasmin had started maintenance, I had been feelng incredibly down for the past few weeks, almost to the point that I felt my mind was beginning to fracture. I  know that it is the build up of stress over eight months. I hold it together when at home for the children – but when given an outlet and a chance to breathe, I realise how up to the limit I am with what I can take. Dealing with Yasmin on steroids earlier in the week had not helped my stress levels.
Andrew had been ill earlier in the week with a temperature of 39C. But after one early night, he continued to work while feeling awful – left with little choice.
By Saturday, Isaac was also ill with a vomiting bug so Andrew took Yasmin to a friend’s son’s third birthday while Isaac and I rested at home.
But at 11pm that night, Yasmin woke us with a high temperature which meant another late night hospital dash just in time for Mother’s Day.
So Mother’s Day was spent with Andrew and Yasmin at hospital all day and Isaac and I at home in a quiet house.
As Yasmin’s neutrophils are above 1 at the moment and her temperature came down on its own, she was discharged at 6pm just in time to present me with beautiful flowers and a huge hug. It seems she just has a cold but her body is fighting it.

Monday, 4 March 2013

STARTING MAINTENANCE


Yasmin in the playroom at GOSH
Andrew, Yasmin and I went to Great Ormond Street last Friday for the start of our daughter’s maintenance treatment.
It was almost six months to the day when we first travelled there, shattered and worried sick, after ten days at our local hospital, to see if we could find out what was wrong with our seriously ill daughter. At that time, Yasmin couldn’t walk and remained curled up in pain and fear in her buggy, her face pale, her long hair matted around her sweaty head.
This time, our cheerful little girl, no longer a toddler, confidently ran the length of the corridor, eager to get to the playroom.
And although the drill was completely the same as the last several times we have visited, everything felt slightly different. We felt different. As a blog reader whose son also has been treated for leukaemia put it: “Welcome to the other side of the Dark and Gloomy Woods! You'll never need to go through them again.”
We had reached the other side.
Although we are relieved to get to maintenance, medical treatments will still remain a huge part of our lives for the next eighteen months.
As our haematology nurse explained, the tests that Yasmin has had throughout her treatment show that the leukaemia has gone. The next 18 months of chemo is to ensure it doesn’t come back, it should destroy any stray leukaemic cells and it will also train the bone marrow to grow healthy and strong.
The best news is that Yasmin is now at 97% for complete cure.
The bad news is that she must still have the following: daily oral chemo, weekly blood tests that involves her port being accessed with a needle and weekly antibiotics. Once a month, we will go to GOSH for Vincristine chemo through her line which is taken with a five day course of steroids. Yasmin is on steroids now and although the doctors indicated that because it is for a small length of time from now on, you don’t get the full effects, this is incorrect! Our daughter is incredibly bad-tempered on steroids. They increase her appetite and, an aspect I had forgotten, they make her wee so much at night she wets the bed through her nappy. This means I have to remember to get up and change the nappy to avoid changing the bed sheets, which I had to do last night at 3am. Steroids, five days a month for 18 months, is not a fun prospect.
Once every three months, we will be back in GOSH for a lumber puncture for chemo in the spinal chord. We also must avoid contact with chicken pox and measles, be constantly vigilant when Yasmin’s immune system is low and if her blood counts fall below a certain level, she will need a transfusion.
But, 18 months from now, that should be it. We will not dwell on any other possibilities. Our date for final treatment is October 30, 2014.