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

Tuesday, 20 November 2012

NEW HOME, NEW START

新しい家、新しい生活


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Cottenhamの祭りで機関車トーマスに乗るヤスミン。
10月12日中枢神経系予防治療を含む強化療法(consolidation phase)というヤスミンの治療の為、アンドリューと私はグレートオーモンドストリート病院に二人の子供を連れて行きました。ヤスミンは、非常に機嫌がよく、アイザックも彼女の横のベッドの上で楽しそうに遊んでいました。 翌日、私たちはアンドリューが生まれ育ったケンブリッジシャー州のCottenhamへ、毎年恒例の祭りを見物しにいきました。私たちは、祭りの楽しい出しものを見て回る前に収穫山車を見るなどして素晴らしい一日を送りました。きかんしゃトーマスの大ファンであるヤスミンは、遊園地で彼の乗り物の上に乗ることができ興奮していました。ヤスミンと家族での外出を楽しむのは本当に久しぶりのことで、私たちは、通常の週末を楽しんでいる「普通」の家族のように感じた。
アイザックが新しい家で楽しんでいるところ。
この「普通」の感覚は、その週を通して続き、私は友達と久し振りに会ったり、子供たちと幸せな日数を費やした。私は公園だけではなく、図書館で行われている赤ちゃんの歌のセッションにヤスミンとアイザックの二人を連れて行くことが出来、達成感を味わうことが出来ました。それは小さなことのように聞こえますが、両方の子供を連れて外出するのは非常に困難です。私は小さな子供2人を持つ他のママ友と会って、私が直面している困難は二人の子供の年の差がないからではなく、どの親でも経験することだと気付き非常に楽になりました。
過去の数週間を振り返り、どのように大変だったかを考えると、私はそのような日々を楽しめるなんて想像もしませんでした。
次の週末、私たちは引っ越しをしました。ヤスミンに起こっているひどいストレスのような状況はあるものの、私たちは家族や親しい友人から多く手伝ってもらう事で引っ越しは比較的簡単に済みました。新しい家で箱を開き、これから起こるであろうすべてに興奮を感じました。

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Yasmin rides on Thomas the Tank Engine at the Cottenham Feast
For the final lumber puncture of the consolidation phase of Yasmin’s treatment on October 12, Andrew and I took both children into Great Ormond Street. Yasmin was the most cheerful yet and Isaac played happily on the bed beside her.
The next day we visited Cottenham, in Cambridgeshire, where Andrew grew up, for its annual Feast Day. We had a lovely day watching the harvest floats before exploring the fun fair. Yasmin, who is a massive fan of Thomas the Tank Engine was thrilled to be able to ride him on a fairground ride. This was the first time we had enjoyed a family day out with Yasmin well enough to walk around a little. We felt almost like a normal family enjoying regular weekend activities.
Isaac enjoys our new home
This sense of normality continued throughout the week and I spent a number of happy days with the children, catching up with friends. I felt a real sense of achievement taking both Yasmin and Isaac to a baby singing session at the library followed by a trip to the park. It sounds like a small thing, but it was often too difficult to get out of the house with both children. I met up with other mum friends who also have two small children and felt much better when I realised that a lot of the difficulties I was experiencing was because there wasn't much of an age gap between my two kids - a major challenge for any parent.
Thinking back to the previous couple of weeks and how awful they had been, I never could have imagined we could have enjoyed such a week.
The following weekend we moved house. Although this sounds like a terrible stress with everything going on with Yasmin, we had so much help on moving day, from family and dear friends, that it was relatively straight forward. Unpacking boxes in our new home, we all felt excited about the future.

Monday, 12 November 2012

LET'S NOT FORGET ABOUT ISAAC


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Isaac by Derick Attwood
A number of people have asked Andrew and I whether we feel as though we have been robbed of the happiness of a new baby due to Yasmin's illness.
It is true that this is not the maternity leave we had planned. Yasmin should have started nursery two days a week which would have given me some precious time alone with Isaac and our weekends should have been filled with family outings, not hospital appointments. We had looked forward to a holiday in the autumn time, which has instead been taken over by numerous hospital stays.
Looking after a new baby alongside a very sick child is a huge challenge – any mother or stay-at-home father of very small children will know how stressful looking after babies with toddlers for days on end is. Add leukaemia into the mix and the pressure is intense.
I have spent very little time alone with Isaac and Andrew even less.
Ready for the park by Karen Attwood
But, despite all of this, I feel that our beautiful boy timed his arrival at just the right moment.
Isaac is one of those ‘easy’ babies, a calm, cheerful soul, who spends his awake time smiling at everybody, happy to be cuddled by anyone. He certainly lives up to his name, which in Hebrew means ‘He will laugh'.  
I’m not sure if it is simply second baby syndrome or the roller coaster of Yasmin's illness which has meant that he has had to get on with it.
In the consolidation phase of Yasmin's treatment, I found it increasingly hard to cope with the two children alone for extended periods, particularly after I cut back on visitors due to fear of further infections.
One awful day, with Yasmin having extreme tantrums (whether these were caused by her age or the drugs or being ill or being jealous of the new baby or all four, I wasn’t sure) I found myself pushing the two of them around the streets near my home in tears thinking I had nowhere to go and no one to see.
Yasmin sings to Isaac after a lumber puncture
But hours later, Isaac started squealing with delight, trying to talk for the first time, as I was bathing him. This immediately made me immeasurably happy.
Although Yasmin is naturally jealous of the rival for her parents’ affections, and can get distraught if he is getting too much attention, she adores her brother and has now started to play with him, holding his hand as she sings nursery rhymes. Isaac’s face lights up each time he sees his sister.
Nothing can really take away completely the wonder of a new son.

Saturday, 10 November 2012

CONSOLIDATION: CHICKEN POX SCARE AND LATE NIGHT HOSPITAL DASH


Yasmin painted like 'Hello Kitty' by Karen Attwood
The results of the MRD marked the end of the induction phase of Yasmin’s treatment and the start of consolidation, which would last three weeks. This consisted of oral chemotherapy at home, her usual Monday and Tuesday antibiotics and a lumber puncture on Fridays at Great Ormond Street. This seemed relatively easy after the month we had had. Happy from the positive results of the MRD and relieved Yasmin was no longer on steroids, Andrew and I felt that we were moving forward.
I offered to take Yasmin in on my own on Fridays for the next few weeks so that Andrew could work. He had taken so much time off already. My mother-in-law, Sandra, had kindly agreed to come and mind Isaac for the days that Yasmin had her appointments. I looked forward to a relatively calm few weeks.
However, not content with the stress entailed in having a new baby and a child with leukaemia, we were also moving house! We had been looking for a family home for several months and had found our dream home in July when Yasmin was very ill but had not been diagnosed. Feeling that the new home would be a place of calm for Yasmin to recover, we pressed on with the house move with Andrew managing the sale from the hospital bed.
On October 3, we met up with our solicitor to arrange the date of exchange and completion. Again this was a big step forward and I felt really excited for the future for the first time in months. But as we got back into the car, I saw that a friend had called my mobile several times. When I reached her, she told me that her daughter, who had been playing with Yasmin five days earlier, had been sent home from nursery with chicken pox. I almost stopped breathing. Chicken pox is life threatening for a child with leukaemia.
All thoughts of the house move gone, I called the local hospital as soon as we got home and explained what had happened. I was told that Yasmin would need to go in and get an injection which would lesson the effect of the chicken pox should she get it. But not really understanding how dangerous this could be and not knowing how effective an injection would be, I was terrified. Several hours later a doctor called back to say that as it was five days ago that the girls played together this didn’t count as contact –chicken pox is only contagious for the two days before the spots appear. She did not need the injection after all.
Two days later Yasmin and I were back at GOSH for her usual lumber puncture. For the first time she did not panic as we arrived and instead started to walk around the ward and the playroom. I had told her as we left that we were going to GOSH to visit the playroom and she didn't need to worry. It was a big relief to witness her not hating being at hospital.
Due to her low HB blood count, I was told that she may have to have a blood transfusion which would mean a stay at the local hospital. I remembered how at the start of all of this the thoughts of a blood transfusion was horrifying, but now with all the medical procedures Yasmin had on an almost daily basis, it was no longer a big deal. It is amazing how we adjust mentally to almost anything. Fortunately, Yasmin’s blood count recovered that day and she did not need the transfusion.
The next day Andrew went away with work for the week and the nurse came in the morning to deaccess Yasmin’s port. My mother had come down to help out while Andrew was away so we spent a fun Saturday taking Yasmin and Isaac out together shopping and for lunch. It was a bright October day and there was a festival atmosphere down town with market stalls lining the streets. Yasmin had her face painted like ‘Hello Kitty’ and was delighted with the results. She even managed to walk down the street a little holding my mother's hand. I began to relax.
That night Yasmin woke at 11pm with a temperature of 38C. An hour later it was 38.5. This meant we had to go straight to our local hospital so that she could be started on antibiotics.
I had to wrench a sleepy Yasmin from bed in her pajamas for a midnight taxi dash to the hospital. Thank goodness, my mum was there to stay with Isaac.
At the hospital, we cuddled in the single bed. Yasmin slept, intermittently waking for her temperature and blood pressure to be monitored, but I didn't sleep at all. Because Yasmin's port had been deaccessed that morning, Yasmin had to have it accessed in the middle of the night. This was always unpleasant as Yasmin, understandably, did not like the needle. But by morning her temperature had come down and we were sent home with a course of antibiotics.
I had thought this consolidation phase was going to be relatively easy but instead of simply having to think about how I should keep my daughter entertained and occupied each day, I was worrying about how to keep her safe and well and away from things that threaten her life. In a panic, I cancelled visitors for the following week. Yasmin was cranky and fed up with everything. I felt shattered, overwhelmed and as though I couldn’t cope.

Friday, 2 November 2012

HAPPY ANNIVERSARY: MRD RESULTS DAY

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Dancing to Abba after great test results

September is usually a month long celebration in the Parsons household with both mine and Andrew’s birthdays at the beginning of the month and our wedding anniversary at the end. The date 28.9.07 is inscribed in our rings – a useful reminder to us both.
But, of course, this year, our fifth wedding anniversary, would not be celebrated in sunny climes, but in our second home, Great Ormond Street, where Yasmin was having yet another lumber puncture. We would also get the results of the Minimum Residual Disease test which would tell us how well our daughter’s body had responded to treatment.
DJ Yasmin 
Already the port had proved a success and Yasmin and I had an almost happy visit to our local hospital a few days later to have Vincristine chemotherapy administered through the wiggly. It was comparatively easy compared to the trauma of the cannula and the procedure took about ten minutes. Yasmin happily chatted to her favourite nurse on the ward, who had got fond of her during her stay in July and August, and she was so buoyed she walked by herself, although falteringly, from the ward to the car for the first time.
In the week between having the port fitted and the results of the MRD, I arranged a lot of activities for Yasmin. As she was unable to get to groups or nursery, I invited friends over to play or we went on visits. I was rushing around so much trying to keep her entertained that I started to get dizzy spells. One day, watching Yasmin stumbling around in a café like a little old woman while trying to play like any well child, I felt a pang. I was seeing her for the first time through the eyes of my friends. With her wasted-away legs, pot belly and thinning hair, I could see how different she was from the lively, confident, child they knew. But despite all she was going through, she was so strong and always trying to enjoy herself.
MRD results day marked the end of the five-week induction phase of treatment. Yasmin had weaned off the steroids during the week and so when we took her in on an empty stomach for her operation, she did not complain about being ‘really hungry’ and she was less grumpy which made the whole process less stressful.
Our consultant came to give us the results of the MRD and it was excellent news. Yasmin’s body had responded well and the leukaemia cells had been killed off. This would mean she would remain on regimen A for the next two years, all being well, with lower levels of chemotherapy. It also gave her a prognosis of 95% complete cure. Andrew and I were joyful. It was the news we had been waiting for for five weeks.
To celebrate our anniversary, we had booked a babysitter, a lovely woman who had been helping with the children for the odd afternoon or evening twice a week, and we had arranged a special meal in a local restaurant. This was to be our first attempt at a night out together in months.
But Isaac, who normally switched from the breast to bottle without a problem decided to throw a massive wobbler and Yasmin, perhaps sensing our elation at her test results, decided this would be the night she would climb out of bed for the first time and start walking around the house. She was so cheerful, seemingly untired and determined to play, that we couldn’t be cross on such a happy day. Instead, we cancelled our plans and stayed in for a curry party. Yasmin joined us at the table for a takeaway feast and stayed up dancing to her favourite Abba CD til gone 11pm. It was an anniversary that we will never forget.