Saturday, 19 April 2014

Thank you Oliver Curd!

We have just come back from a really lovely family holiday thanks to the Oliver Curd Trust.  


The Oliver Curd Trust set up in January 2008 by Oliver’s parents Richard and Sarah, in memory of their son Oliver. 
Oliver was diagnosed with a rare bone cancer, a Ewings Sarcoma in April 2006. He completed treatment at the Royal Marsden Hospital in May 2007, but sadly lost his long brave fight with the disease in November 2007. The objective and purpose of the charity is to provide fully equipped holiday accommodation to families supporting children and young people in the UK, suffering from childhood cancer and other life threatening illnesses. 
The Trust has a couple of caravans and we enjoyed the one in Crowhurst Park, Battle. Amazingly clean, lots of space and every modcon we needed. We had complete access to the swimming pool and we made full use of that - at least once a day!! It was also a great place to go on outings too as well.

We have been hit quite badly financially with Dave having to give up his full time job and begin supply teaching which is not very secure and doesn't pay during school holidays. I had to give up a new job when Adi was diagnosed and put my teaching job on hold for a year. We count ourselves very lucky that Dave could find flexible work, even though it was a drop in income, so a family holiday is a luxury that is a bit out of our reach at the moment. If it wasn't for the Oliver Curd Trust, we wouldn't have been able to do it. 

But it's not just about the money, the Trust understand that anything can happen, so there are first aid supplies to rival a GPs, the place is spotless, emergency numbers and hospital contacts are provided, indoor activities galore  - so if you are too tired to go out you can just potter around indoors and, of course, if you have to cancel last minute there is no problem. It is stress-free and so very, very good to get away.

So my two little water-babies also enjoyed the park there, the fishing pond (Asher even caught a fish!) and we ventured out to the surrounding area visiting a miniature railway, a zoo and even went pony trekking. A truly lovely and much needed and valued family holiday!


Tuesday, 8 April 2014

9 months on and no change!!

Adi's scan came back unchanged! That is GOOD!!!

We are absolutely exhausted now though. People are expecting us to be elated but the truth is that we are totally emotionally and physically drained...too tired to jump about excitedly.

We are happy and releived but we know we have to face this again in July. We also had to have a conversation about growth hormone therapy, which it is probable that Adi will need and also getting her adequately supported in school. Both things we need to address as soon as possible, to get them in place  to make sure that she does not become disadvantaged as she grows and develops.

Annoyingly growth hormone therapy is very expensive and you have to apply to your local authority to get the funding. This can take months!! Just another stress that parents like us don't need!!

Likewise, getting Adi 'statemented' to ensure she gets the learning support she needs through school in place needs to happen sooner rather than later. She is having a neuropsychological test in June to get that ball started.

So forgive us if we seem muted...we are pleased but are very tired and still have a lot to think about and deal with over the coming months and years....

Tuesday, 1 April 2014

Scanxiety


Scanxiety – a word coined by parents who are waiting for the upcoming MRI scans or the results.

 

It afflicts us all. The lead up to each scan gets tenser and tenser…with us it starts about 4-6 weeks before the scan. We start to count down the weeks and then the days. We start to get more jumpy, more forgetful, more distracted, more short tempered, our sleep is more troubled as our minds fill up with the impending appointment. We watch every move Adi makes, the house gets increasingly muddled, food is running out in the cupboards and it seems harder to get the kids out in the morning.

 

We are worried about the day itself – will Adi have to wait long? Will she cope without food? Will she be distressed when she wakes? What will the journey to and from the hospital be like? Even though on this occasion we are the very first ones to be seen on the day, which means being at the hospital by 7.30am…so we beat the traffic too! Doesn’t stop the anxiety though.

 


We are worried sick about the results – even though Adi is growing and developing as she should, there is still that unknown. Will something be growing that is so small that we can’t see it yet? Will the scan show a change of any sort? Again we are incredibly lucky…we will get our results 3 days after the scan – very, very unusual. The wait to get the results is excruciating.

 

Adi’s next scan is this Friday and we are on edge…particularly after our run to the hospital last week. Asher is feeling it and has been getting increasingly clingy over the last few weeks…he’s been sleeping in Adi’s bedroom with her for the last fortnight. 

 

On Southend Pier Train
In the meantime, life goes on. The teacher for the deaf visited Adi at nursery today and remarked that she has made good progress since her last visit. We also had speech therapy and Adi is starting to learn ‘ffff’ sounds. All good and very encouraging, so am trying to focus on that until Friday comes!

Friday, 28 March 2014

Just a nasty cold......??

Adi's been under the weather for a few days. Nothing unusual there, a huge swathe of her nursery friends have gone down with chicken pox, chest infections and other nasties in the last couple of weeks. Luckily we had her vaccinated against chicken pox a couple of weeks ago...not really necessary but I just couldn't bear the thought of her having to put up with nasty itchy spots and misery. The latest ailment just seemed to be another cold and was developing into a very bad cough. Didn't stop her from smiling and laughing though, so when she first complained of a headache I decided not to take any action.

The cough got worse and I took her to the doctor yesterday, he gave her some antibiotics, I also told him about her headache complaints, which she had mentioned a couple more times. He told me to call GOSH. I spoke to our oncology nurse who said we had to go to the local hospital asap to get a neurological assessment and, possibly, a CT scan as well. Off we went.

I suddenly felt awful and filled with guilt. She had told me about a headache a couple of days earlier but because she was still happy, talking, eating and playing normally I didn't take it too seriously. Now I felt that I should have reported it immediately. They took a few hours to come a see her, despite us being there on a recommendation from GOSH!! Of course, with every passing moment, I felt more and more anxious. Adi was also developing a temperature and we couldn't treat that until the doctor had been either! Plus, it was getting later and later and if she did need another scan, we were running out of time. Adi's was having a great time though - all the staff came to say hello as they hadn't seen her for a while. she kept saying how nice it was to be in hospital!! (That broke my heart too.)

When the doctor finally came she checked all of Adi's neurological functions and Adi responded as she should. They consulted with GOSH and decided that a scan was not necessary and her headaches were probably being caused by blocked sinuses! We were also given paracetamol for Adi's temperature, which came straight down. We got to go home 6 hours after we arrived but the stress involved in having a simple headcold was huge!!!

On a selfish note, I am glad my instincts were in line with the doctor's diagnosis but I am not going to wait again. It's horrible though to realise that this is what we face every time Adi gets an 'ordinary' bug. The good news is that Adi is doing well today and playing with her dolls - a true superstar!

Sunday, 16 March 2014

Happy Happy Little Girl

Adi is doing really well at the moment. Enjoying life and having fun, she's even started dancing lessons - tap and ballet, just like all the other little girls her age. The first time I saw her enjoying the dance lesson, I couldn't help it but tears just ran down my face. This morning she just ran off to join her friends, to run and play without a backward glance at me...something unheard of just a few months ago. A friend turned to me and said 'she must be feeling well now. She must've been feeling so ill before and just couldn't tell you'. I think my friend is right....we didn't realise just how ill she was feeling and it made her grumpy and miserable and clingy. Now she is being happy and laughing and cheeky - wonderful to see her growing into a bright, funny little girl. Adi will still get sudden bouts of exhaustion and can't quite keep up with her peers running around but she is giving it a damn good go!

Her next scan is on the 1st April....3 weeks away but Dave and I are already getting nervous and watching every step, every tantrum and every mouthful of food....we constantly question if she has enough energy, is eating enough, is miserable for a reason, walking OK.....but Adi is ignoring us and singing and dancing her way through the day!

Ready for school

6am picnic

riding shotgun

digging up the road!

Thursday, 6 March 2014

Quieter times but somehow harder.

We haven't written for a while. In a funny way, now things have quietened down, it all feels harder.

December and January were madly busy months - party after party and then the amazing trip to Disneyland Paris that the kids enjoyed so much! We were overwhelmed with people being so kind to us and making sure the kids had wonderful birthdays and celebrations. We didn't stop to think.

We came back from Disneyland feeling buoyed up - the break and change of scenery did us a lot of good. I felt it was time to pull my socks up and get on with things...perhaps even redecorate the house.

Then I found I had time to think. Time to assess our situation.

I belong to a facebook group for parents of Cancer Kids - it is a very special place where people can talk frankly about their fears, about how they really feel. It is a place where people really understand what you are feeling. No matter how kind our friends are, no matter how much they love us or try to understand, thankfully, they never will unless they have been through this nightmare themselves. I truly hope that none of them ever, ever finds out just how it feels. So what that means is that Dave and I tend to censor ourselves a bit. We don't tell people how we are really feeling or what each day really brings for us - quite frankly we don't want to bring them down or burden them with our reality. We also need to keep things as normal as possible for all our sakes. So this facebook group is a safe space where you can say how you are feeling and everyone there knows what it is truly like. There is no need for a 'brave face' and no one is going to tell you how things are 'looking up' or ask you if Adi's 'better now?'. It helps but it has also brought me face to face with the realities of Adi's condition as I read about what other people are dealing with with their children. Some of the children have developed secondary cancers, some have already become angels and stars shining above us.

With time to think and time to read, I am finally coming to the realisation that Adi has cancer. She is at risk of the cancer returning, at a higher than normal risk of a secondary cancer forming. It is hard to process. It is hard to think of this and carry on as normal. But I have to. I cannot walk around being miserable - that does not make for a happy, healthy home and that is what we want to provide for our children. So I guess my next battle is with myself. Shake off the negative thoughts and enjoy my gorgeous, funny and bright children and try to find happy time with my husband. Deep breath and onwards and upwards.


Sunday, 2 February 2014

A busy few weeks

 Emma and I have been busy and tired finally a one and half months of celebrations and worry has come to end.

It all started with Chanukah, followed by Xmas celebrations, followed by New Year's Day, then 2nd of Jan was my birthday and importantly Adi's 2nd post treatment MRI scan, followed by the wait for the results, then another family birthday,  followed by Adi's birthday party, days later the 4 days to Disney Land Paris (with big, big thanks to Rays of Sunshine) ending this week with Asher's birthday and his party. Safe to say, we are tired, Emma is wiped out and the kids spaced out.

Adi loved Disney Land Paris (DLP), we got upgraded which was rather nice. What surprised me was that the kids had been asking to go to DLP, yet when we got to the station and explained where we were going Asher took it in his stride and went with flow. Adi saw it as a another trip to start with, yet once we were there the kids absolutely loved it. The kids found it magical, thanks to a special pass that we were given Adi was identified a child who was 'special' so could jump the queue  plus when a DLP character saw her they gave her special attention, she loved that!!

Asher got a little touchy because of the attention she was getting so we had a quiet word with him and shortly after that he calmed down. In fact, he's been the model big brother since.To be honest it hurt my feelings that we were there and the attention she was getting as it was continual reminder how ill Adi had been and the fact that we have a very long way to go. We saw a wild west show which was amazing, Adi loved the horses, Asher loved it all. Then there was the stunt show which Emma loved, burning rubber, stunt cars and bikes!!! Adi, Miss speed freak was having a wild time.... more to follow but it was lovely and truly memorable ...