I know we haven't posted any updates for sometime, but we felt that today was very significant, Bethany has been in remission for 5 years from Neuroblastoma, a day for reflection, which brings many emotions. I wanted people who read this site to know that there is hope as there are so many tragic endings to this disease....many children we knew tragically didn't survive, and we remember them fondly in our hearts.
We have had many ups and downs during the past 5 years, and at the time of diagnosis and during treatment this day seemed like such a long time away, and sometimes our hope for this day faded, so we thank everyone who has helped us through it, family, friends and medical staff.
Bethany is a happy loving 6 year old, who is doing very well at school and she loves life....she doesn't remember the hard times, which is a blessing, but we will never forget!
She is our brave little soldier, Our love, Our hope and Our inspiration every single day.
Bethany singing in the school choir - 2011 Farnham Christmas Lights turn on
October 2009
Bethany had her usual checkup this month with Professor Pearson, and all was well as usual. He doesn't want to see her now until March next year, which seems like ages away. Again we saw some of the staff that hadn't seen her for ages, and they said they wouldn't have recognised her if she wasn't with us....They all looked really pleased to see us all and sew how well Bethany is doing. I can imagine that this makes their jobs all the more worthwhile when they can see how children come through the other side, and aren't on treatment anymore, living a normal life that all children should.
Bethany also started school in the middle of September, she is loving it, we weren't sure if that was all going to change once she realised that this was a long-term thing, but fortunately she still skips her way to school everyday.
We also had an appointment with a Speech Therapist just before she started school, and they were extremely happy with her speech and have discharged us, saying that at present her speech capabilities are well within the normal range of all children her age, so that was a relief that we don't have to keep making appointments to see someone else, and her high frequency hearing loss hadn't affected her speech.
I will definately post an update before our next appointment as it does seem like a long time away....it will probably be after Christmas.
July 2009
Bethany's appointment in June was postponed so she had her usual check-up in the middle of this month. All was well, she is certainly growing and putting weight on at the rate of knots!!! Half the staff didn't recognise her.
We have all had a brilliant summer so far, we were on holiday with friends of ours at the end of June to Corfu, we stayed in a fantastic villa in Kassiopi, which had beautiful views with 2 swimming pools, Bethany once again loved the water and spent all day every day in it. (Pictures to follow).
She also celebrated her 4th Birthday at the end of this month, her party was at a soft play area near us and she invited some of her nursery friends....she loved it!! (Pictures to follow)
We are off to Spain at the end of August, she is very excited about that. Her next check-up appointment is in October, so will update then....
April 2009
Bethany finally had her hearing test at the end of this month, we had numerous appointments booked over the past year, but due to Bethany being ill when these appointments were booked we have had to cancel them.
Some of the treatment (chemotherapy drugs, cisplatin, carboplatin) she was given are known to cause some levels of hearing loss, we were fully aware of this at the time.
Bethany has suffered high frequency hearing loss, she does not need to wear a hearing aid, but we have been referred to a speech therapist. As we understand it this type of hearing loss means that she struggles to hear certain sounds in the alphabet, like sh, th, ch, c, s, f, h. Apparently this type of hearing loss can go undetected for sometime as children tend to adapt to it by lip reading, and guessing what is being said. During the hearing test the Doctor did demonstrate to us that Bethany does actually lip read, she covered her mouth when talking and asked her to point to certain items on the table, it was quite noticeable that Bethany was struggling to understand what she was saying, and was trying to guess, but as soon as she took her hand away and said the word again she was fine. It was quite remarkable to see that she has just adapted herself to deal with this.
At the beginning of this process when we were told that a possible side effect of her treatment could be hearing loss, we felt that if we got through it all, and this was the only thing we had to deal with afterwards we would be very happy, and we still stand by those thoughts.
We are sure that Bethany will be helped and guided through school for it not to affect her learning, and we know that she is a very determined child who will just get on with it.
March 2009
Bethany had her usual checkup with Professor Pearson at the beginning of this month, and all was well. He did hope for our sake that all the common illneses she has been having will now ease off, and hopefully we have had the worst of it, therefore we are glad to now be in Spring, but it has brought with it the next illness, which apparently is rife at this time of year - Chicken Pox (pictures to follow). Poor Bethany she has had them everywhere, but after the initial few days things were fine. It did take some explaining why she had so many spots, she wasn't sure about it at first, and kept looking in the mirror, asking when are they going to go, I think she has got used to them now!!!
Our next appointment is in June, just before we go on holiday, so will update after that......
January 2009
It has been a busy few months. From the end of November to Christmas time, Bethany had one illness after another, we were permanantly at the doctors/hospital's at weekends getting antibiotics. Her temperatures were soaring out of control, parents who have been through our situation can understand it was a worrying time. But Thank goodness all was well for her Uncle Pete and Auntie Abbi's wedding. She was a flower girl, and she did a grand job of walking down the aisle with all of them....Very Sweet!!!
Christmas was great and Bethany really loved it this year, and wanted to know why we couldn't have Christmas Day everyday, I think she got a bit spoilt!!! Everytime we went visiting friends and family she was expecting a present!!!
Our appointment at the Marsden was cancelled in December, so we went at the beginning of this month. All was well, as we always hope it will be!! Our next appointment is in March.
Bethany has also started Ballet classes this month, and she looks adorable in her ballet gear...It is so sweet to watch them all running around the class pretending to be fairies!!!
October 2008
It has seemed a long time since we were at the Marsden, Bethany had her two monthly checkup with Andy Pearson in the middle of this month, and all was well, which is what we want to continue to hear...After our next Clinic appointment in December, we will increasing the gap to three months between each clinic, so it really will feel like a long gap between visits, but this does mean we are heading in the right direction.
Bethany started Pre-school in September, after a few teary starts, she is doing very well and enjoying it. We have a million and one pictures brought home each day, which is quite sweet!! Obviously due to her increased interaction with children she is now suffering from all the usual childhood bugs that seem to permanently go around and around. But she seems to be fighting these off quite well, and they are helping to build up her immune system.
Also in September we spent a week at Center Parcs in Longleat with friends of ours. It was a fantastic and well earned holiday, Bethany once again spent most of her time in the water, absolutely loving it. She also went down all the water slides, even the adult ones!!! I think we will definately be visiting there again...
August 2008
Bethany had her usual checkup with Andy Pearson at the beginning of this month, and all was well, as we will always say 'long may this continue'.
Once again With Special Thanks to ALL at The Emily Ash Trust:
We were asked if we would like to spend a week in their mobile home/caravan at Crowhurst Park in Battle, Hastings, we had a fantastic time. We spent the week with Spencer's Parents and Sister, good friends of ours, and we all thought it was amazing. The caravan, not that you can call it that (we had an ensuite bathroom to our bedroom), was out of this world, very plush. The site is lovely, 400 acres of land, all beautifully presented, and a brilliant leisure centre on site, 2 minutes walk from the caravan. We once again can't thank them enough for their generosity. (Photo's to follow)
Bethany hadn't been to a swimming pool since before she was diagnosed with cancer, so we weren't sure how she would react, as she can be a bit of a drama queen in the bath if water goes on her face. She absolutely loved it, and by Day 2 she was going off on her own with her float and informing us "I can do it myself"!
June 2008
Bethany had her port removed on Friday 19th June, we are now hoping this is the end of any invasive procedures, and we can carry on living a normal family life. We also saw our oncologist who is still very pleased with Bethany, and we are due to see him again in August. She also went to see her new nursery school, which she loved (cried when we left!!) and is due to start in September, I think this will be the best thing for her, and she can start to do things that all toddlers of her age do and enjoy. May her progress and good health continue!!!
April 2008
Bethany had her final scans at the end of this month, and we received the good news that they were all clear. Although there is still a long way to go, this is the best news we could receive at this time. Bethany is doing very well at the moment and is enjoying life like a normal nearly 3 year old should. We are now just waiting for her to have her Port removed at the Royal Marsden. We are due to see our Oncologist Mid June for a checkup, so things are going well at the moment. She will be able to be around all children by mid August as the risks of Chicken Pox and Measles will be no different to any other child by this stage.
December 2007
With Special Thanks to ALL at The Emily Ash Trust:
In December 2007 we were lucky enough to be invited on a trip to visit Father Christmas at his home in Lapland.
The day was magical and after the year our little Bethany had been through, it was a very special time for us all.
Sleigh rides with the reindeers and huskees, ice sculpting in the snow, mini snowmobils, alpine skiing, ice hockey, and of course, our special visit with the man himself (and his little helpers), the day had it all, and will stay with us forever.