Story written 2014
Safaa was born on the 24th April 2009. She was our first child and both my husband and I were very excited. She was born on time and was a normal healthy baby reaching all her milestones. After 9 months’ maternity leave I went back to work part time and Safaa’s dad was working full time. At age 11 months we gave her the normal routine vaccinations, she had been fine with all the other previous ones so had no reason to worry about these ones. However, this time round she became very poorly with flu like symptoms and generally being very upset, constant crying, not feeding and not sleeping for nights on end. Her eyes, arms, legs and head were also shaking constantly. Safaa was able to stand and cruise however within a matter of a week she lost her ability to do so. Her body was shaking/trembling involuntarily and she could not even sit up.
On 18th April 2010 we took her to the doctors and got sent straight to Preston hospital. We could see that the doctor was clearly worried but we had no idea and were not prepared for what was to come. The doctor did some examinations on her and more doctors followed one after the other. Safaa would not let them check her and would scream and cry, she was not my happy little baby.
A consultant neurologist then came and told us his initial thought was it is a rare type of cancer called neuroblastoma and associated illness called ppsoclonus myoclonuss syndrome. They then carried out a series of intrusive tests and scans. They did ultrasounds, MRI, blood tests, lumber punctures and lots of other things. My poor baby was being poked and prodded everywhere. I spent my first night in hospital with Safaa, however she did not sleep and cried all night.
The next day we got told the test results were back and it was what they thought – she had a neuroblastoma tumour next to her spine. I again had another first – a ride in a hospital ambulance. We got transferred straight to the specialist hospital Royal Manchester Children’s Hospital which was then to be my home for the next five months. That was also my last day at work. At Manchester Hospital they re-did all the scans to ensure the cancer had not spread further and fortunately it had not. My husband came with all bags packed with clothes and we got given a room to stay. Everyday was the same, Safaa would be unhappy, constantly crying, would not eat, and on top of that she was physically deteriorating. The constant medicines, being hooked on machines, and being surrounded by nurses and doctors made it worse.
Her 1st birthday was in the Oncology ward at Royal Manchester Children’s Hospital – the nurses threw her a surprise party which was very sweet but she was far too unwell to enjoy it. We got told she would need six hours of surgery to remove as much of the tumour as possible. This was scheduled for 20th May 2010 and we got started on an initial course of treatment. It was a waiting game until 20th May, we were all very anxious and did not know what to expect. Dad also had to take time off work. Family visited everyday and it was very tiring for us physically, mentally and emotionally. We did not know what the future held.
The 20th May 2010 came and the surgeon went through all the pre-op procedures and asked for consent. We got told as the tumour is so close to the spine there was a chance of paralysis. I could not sign the consent form so dad had to do it. Six hours of waiting seemed like six days. By the grace of God, the majority of the tumour was removed, however they could not get all of it due to being next to the spine. The tumour was the size of two balls. We were very relieved and thankful the operation went well.
However this was only the beginning and the real hard work was now to start. Safaa got an infection during the operation so had to be in ICU and we got told the opsoclonus myoclonus syndrome was very rare and that was a big problem as it would affect her developmentally. In September 2010 we got transferred to Preston Hospital where we stayed for nearly another nine months. She was on lots of medication – steroids, IVIG, dexamethsone, chemotherapy. Our lives revolved around hospitals, physios, dieticians, OTs and lots of other health professionals. We got given a room full of equipment as she could not stand up, walk, talk, eat or sleep. It was all very hard. She had a standing frame which we had to strap her in everyday so she could stand, walker to use but she could not stand so that was pointless, special table and chair, helmet etc. At nights she would be given medicine to knock her out so she and we could sleep. She got given a gastrostomy which is a button in her tummy so we could give her milk.
We decided she needed to go somewhere and after research we found a specialist nursery near Ormskirk called The Legacy Rainbow House which specialises with disabled kids. We spend two hours a day driving to take her there and back. Safaa started there in January 2012. In April 2012 after her 3rd birthday, she took her first very wobbly independent step! Three years on Safaa was still not the happy child we knew though, she would still wake up crying, feeding was still a problem, and she would get very angry as physically she could not do what her peers were doing due to only being able to walk few steps and then falling and having difficulties with her gross motor skills. We were still going for regular scans to check for the neuroblastoma as well as meeting other specialist with regards to the opsoclonus myoclonus syndrome. We were being seen at Preston hospital, Manchester hospital and Liverpool Alder Hey hospital!
Safaa was 5 on April 2014 and the weekly appointments still continue. She has two weekly blood tests and is onto her second round of chemotherapy. She will have had her chemo for 2.5 years now. She gets a lot of side effects from it, however, as she is now older she understands more that doctors are helping her to get better. She also now attends a special needs school full-time and also goes for her two hourly conductive education sessions. She is now much happier, can walk short distances independently, but still has very poor balance and coordination so uses a wheelchair most of the time. Her feeding is improving slowly – she loves chocolate (who doesn’t!) and sleeps at night without medicine. Her eyes and legs do still shake which means illness is still not cured and there is still a long way to go, but along the way we have met and made friends with some very special and incredible children and families.
Update 8th February 2017
Since Christmas, Safaa has deteriorated and had been showing signs of relapse of OMS. I was hoping and wishing it was just a bad spell with it being winter however the last few weeks she has lost the ability to walk by herself safely without support, her eyes and body is shaking and the worst she is constantly upset and crying which is unfortunately a symptom of her condition – it makes the child very unhappy/irritable. At school she has been sleeping most of the days and at home too. When she is awake she has been having episodes of ‘absences’ similar to epilepsy type seizures. We are waiting on the doctors to maybe do EEG of brain activity and also to restart medication again. Fingers crossed she doesn’t have to restart chemo.
Update 5th January 2017
Firstly, thank you very much for all the amazing post we have received from everyone especially during the Christmas period. It was truly fantastic and brought lots of smiles. Safaa’s health has been ok, she is off all medication at the moment, but has unfortunately had to restart her pump feeds during the day as well as night. She is trying very hard at school and has managed to write her name which we are very proud of. She has lost her balance several times and fallen down the stairs, she also fell and cut her head open which meant stitches – this is going to happen, as on poorly days she loses her mobility. Safaa is now involved with the Learning Disability team who I’m hoping will be able help her more.
Safaa’s brothers Abubakr and Muhammad Ali are both doing well. The playhouse present from Vikki is still as amazing, the kids play in it all day long and call it their secret den.
Update 28th November 2016
This month we had a review with a few of Safaa’s many consultants. Safaa’s condition is long term in terms of the OMS syndrome and of course the tumour which was not completely removed due to it being next to her spine.
Safaa has been on nonstop medication some of it very toxic for a very long time 6 years so it’s has been decided that we now stop it all to avoid damage from the medications and also as they have tried everything they can for her. This is it for her for now at least.
We don’t know what this will mean for her as it has been the medicines which have been keeping her stable and We are slightly upset as we don’t know what will happen now and worried and just pray for the best that she doesn’t relapse or deteriorate. The doctor has said any sign of relapse in her physical ability and we will need to have a look at the tumour again to check it has not grown.
Safaa is still having issues dealing with the fact she is different to her peers and mainly that she can’t read and write. She has also been not eating very well so we’ve had her pump feeds on in the morning.It’s hard for her to understand what is wrong with her so the posts really help in making her feel special.
Thank you everyone.
Update 3rd October 2016
This has been a busy month. Firstly a huge thank you to Postpals for the incredible Chessington weekend away we had the best time so thank you Vikki and team x
Safaa and Abubakr received the awesome playhouse which is a big hit and taking pride of place in the living room! And also the lovely scooters which they are having lots of fun playing with. Thank you for all the lovely letters and cards everyone has sent.
This month we had a review with a few of Safaa’s many consultants. Safaa’s condition is long term in terms of the OMS syndrome and of course the tumour which was not completely removed Due to it being next to her spine.
Safaa has been on nonstop medication some of it very toxic for a very long time 5/6 years so it’s has been decided that we now stop it all to avoid damage from the medications and also as they have tried everything they can for her. This is it for her for now at least.
We don’t know what this will mean for her as it has been the medicines which have been keeping her stable and We are slightly upset as we don’t know what will happen now and worried and just pray for the best that she doesn’t relapse or deteriorate.
Safaa is still having issues dealing with the fact she is different to her peers and mainly that she can’t read and write. It’s hard for her to understand what is wrong with her so the posts really help in making her feel special.
Thank you everyone.
Update 11th July 2016
It was our Ramadhan last month where we fast for 30 days from sunrise to sunset, which is approx 20 hours without water or food. We had our Eid day on 6th July which is a big celebration and lots of eating!
Safaa has been finding things a bit difficult. She has started to question why she is ‘different’ and has to have medication, wear nappies etc. This not understanding is also affecting her behaviour and making her upset. She keeps saying she wants to read and write. It is also upsetting for us as parents to see that she is struggling to deal with things. She is seeing a psychologist but I think she is still a bit young to understand what he says to her.
We have started toilet training Abubakr and he is getting lots of rewards when he manages to go without accidents.
Looking forward to the summer holidays and plenty of fun and hopefully sunshine.
Update 4th May 2016
Safaa’s had a very busy few weeks where she has done lots of special things. She was a mascot for Preston North End Football Club, where she got VIP treatment and got to meet all the players and watch the game. She then did a 5 mile charity walk in her wheelchair with me and her dad, and raised £548 for a charity called Rainbow House where she attends once a week to do physio and conductive education. Then finally it was her 7th birthday and got lots of presents.
Thank you everyone for all the post.
Update 3rd March 2016
Safaa has started seeing a psychologist again to try and help her with her behaviour, etc. We have been blessed with a baby boy and have named him Muhammed Ali, so Safaa now has 2 younger brothers! Thank you to everyone for all the post and the lovely Valentines balloon.
Update 10th February 2016
Safaa has been poorly since Christmas and she just does not seem to be getting better. We have had to also start her pump feeds during the daytime and she has been getting very tired. Since last week she has had very poor balance and has had problems walking without help. She is getting very upset and also angry at the same time. She has been in hospital over the weekend and her little brother is also a bit poorly at the moment. Hope things settle soon as I am due to give birth in 2 weeks! Thank you for all the lovely gifts.
Update 6th January 2016
Thank you to everyone for the lovely post we have received, they were all fantastic. We have had to increase Safaa’s medication this month, as there have been days where she’s not been able to stand up. She’s had a few accidents at school, losing her balance which resulted in her cutting her head so had to go hospital. The increase in medication has been affecting her moods and she has been having a lot of tantrums. The post nearly every day has been very helpful to calm her down, especially all the girly gifts she’s received. Also we stopped her night feeds for a trial but her weight has decreased a lot so have had to restart that again. Hopefully the new year and school routine again will help.
Update 5th November 2015
Thank you to everyone that has sent post this month. Safaa always enjoys the monthly post from Jess, and got a lovely bracelet from Iba, a doll from Helen, and lots of other nice post.
Update 7th September 2015
Safaa was granted a wish to go Disneyland Paris this month and it was really good and we all really enjoyed it. She did get very tired, but overall had fun.
Recently she has been getting more tired and her tremors/shaking has returned, particularly at night time, which wakes her up (a symptom of her OMS condition).
Thank you for all the post received this month from Jess, Dottie and all the other lovely people. Abubakr also received his Paper Cut, which we love, as it is his favourite Mr Tumble theme.
Update 6th August 2015
I just want to say thank you for all the post. The summer holidays are always a bit harder entertaining the kids and the lovely cards, letters and gifts have really helped.
Update 7th July 2015
Safaa is doing well with her medication and has not had many low blood counts recently. She is also eating mainly by mouth now which is a huge milestone.
Safaa’s little brother, Abubakr, celebrated his 2nd birthday on 26th June and we had a little party in Pizza Hut. They both loved the pizza and especially the ice cream factory.
Thank you for the lovely paper cut gift, it is hung up in her bedroom. Thank you for all her other lovely post too.
Update 1st May 2015
Safaa is having more frequent low blood counts and is getting a lot more infections and colds. She has also started seeing a psychologist to help with her behaviour issues.
Every day she comes home from school and always asks if she can open her post, so thank you to everyone that has been sending her post. We try our best to reply to each post but sometimes due to time and other commitments I forget, so apologies and thank you to those whom I have missed replying to.
Update 4th April 2015
Thank you for all the lovely gifts Safaa has received this month. She really likes the bath soap, Easter egg, handbag book and a lovely magic wand. We all really appreciate it.
Update 3rd March 2015
Safaa is doing very well, she is physically getting more mobile and can walk a very short distance. Her speech is coming along well too and she is eating more by mouth. She has started a new daily immune-suppressant medicine but her blood count gets very low because of it and she has been getting very tired and ill.
Safaa really enjoys the post she receives, thank you to everyone.
Update 29th November 2014
Safaa absolutely loves coming home and opening her post. She has been in hospital since Wednesday and it really cheers her up.
Update 6th November 2014
Having had chemo for almost 3 years it is now being stopped this month. Prayers needed as the last time it was stopped she relapsed. She will also be due to start taking daily tablets which for a 5 year old will be very difficult.
I just want to say thank you so much for the balloon yesterday as Safaa was so thrilled by it, especially as it was Frozen. Also from me as a parent, she received four items today and I had a few tears because it made such a nice change to receive ‘nice’ post instead of the usual hospital letters.