Monday, 21 July 2014

School reports

On Friday I got our kids school reports.

Ashers was fine - average all the way, nothing amazing, nothing terrible.

Adi's was similar - what she can do, that she has made progress and is well behaved.

As parents we are very happy and relieved, especially with Asher. With Adi, it might be more obvious - she has settled well into nursery, she wants to learn and is making friends. There are issues with her hearing, she will get overly upset at small changes in routine and she may get knocked over or pushed out the way easily. But in general, she is keeping up with her peers and for that we will be forever grateful. We know other children who have suffered many more disabilities and hardships after having the same tumour and, so far, we are doing amazingly well. Much of that is down to our tenacious Adi and her 'nothing's gonna stop me' attitude.

With Asher, however, the fact that he has kept up with his peers and achieved his 'age-related expectations' is a relief. Despite everything that has been thrown at him, his sister's continual visits to hospital, her near total domination of my attention,  my husband's and my stress and bad tempers, our distraction at scan times, my inability to remember to check his school bag for homework or forms, the way my exhaustion means I don't make him sit and finish homework, my forgetfulness when he asks for a drink or something to eat....despite all of those things Asher is doing fine. He has friends, is achieving his targets and still loves me.

I am hopeful that next year will continue to show improvement. Adi starts reception, I have applied for an educational statement for her to receive additional help to make sure she continues to keep up. I am optimistic that, if Adi's scans continue to be clear, I will have a bit more 'brainspace' as I call it, for Asher and his academic development....he's come this far pretty much by himself, hopefully if I can move myself to action, he can be top of the year!

Monday, 7 July 2014

One year cancer free!!!

Adi's scan was clear!

We knew she was fine and we knew that Dr Slater, our consultant, would ring us if there had been a problem, but still this morning I was gripped with the thought 'what if there is something she wants to tell us face to face?'. So when I gave her a terrified look because she hadn't immediately given us the 'OK', she looked at me as if I was mad, 'it's fine' she said, 'you know I would have rung you if anything had changed'. We do know this, Olga Slater has been amazing throughout this horrific journey but I think we just need to hear her say it out loud. Just to be completely sure.

She is happy with Adi and how she is doing. She is not yet ready to reduce the frequency of Adi's scans, so the next one will be in October but so far so good!

Sunday, 6 July 2014

2 years today.....

It was two years today that Adi went into surgery to remove a 4.5cm tumour from the back of her head.

She was in surgery for 7 hours. Dave and I went to the pub for a while, Dave's sister, Anna, joined us and my friend, Nikki, too. I nearly got into a fight over a spilled drink - not something I would normally do. Tomorrow we find out if we got that tumour or if anything has come back. Tomorrow we find out if Adi has made it one year with No Evidence of Disease, or NED as it is termed on the oncology Facebook pages.

It has been a mad couple of weeks. We have had Adi's latest scan hanging over us for a while...in truth we breathe for about a week before we start worrying about the next one. The pressure starts to build up as we get closer and we look for any clues that we might have missed. Dave and I start to get more crabby with eachother and more scatty with our friends. So, while we had a wonderful time at Retreat, we were all too aware that the scan was coming up.

The scan was last Tuesday, the day after my birthday. Adi was diagnosed 2 days after my fortieth. Dave had taken me out but we knew Adi wasn't well and were worried the whole time we were out. I suspect that my birthdays are going to precede scan days for the rest of my life now. Like last year, I wasn't really that keen on celebrating this year but then another amazing family gave me a wonderful way to relax, have fun and forget about the impending scan.

Laughlan is now 7. He was diagnosed with medulloblastoma when he was 4. He overcame that, only to be diagnosed with a secondary cancer AML leukemia, cased by the chemotherapy he received to treat the brain tumour. He received a bone marrow transplant and is proving to be a true warrior. The beach hut was his idea - a place where kids with brain tumours and their families can go and have fun for the day. That is where we went for my birthday and we had an absolute blast!! Gorgeous beach hut, miles of lovely beach and a funfair on the pier, perfect for kids Adi and Asher's age...I actually forgot all about the scan and had a really special day - we all did! Just thinking about it makes me smile, and I need a little light relief tonight! Thank you Lockey xxxxx

To find out more about Laughlan and the beach hut visit: http://www.unlockalifeforlockey.co.uk .





Wednesday, 25 June 2014

A wonderful Retreat

One of the charities that looks after us, Camp Simcha, hosted a retreat for families of children with cancer this weekend. The aims are threefold: to give the children a wonderful time, to give the families a chance to talk with others in the same situation and, to give parents a break. They succeeded on all fronts and more!

It is a double-edged sword attending something like this as you are all here because your children have cancer - not what you want to bring you together with someone, believe me. However, it IS good to be able to talk to people in a language they and you understand, without having to explain things in great depth. It is good to talk to people who know what it is like to hang around hospitals, to compare doctors, to understand the pressures on the siblings, grandparents and friendships. You feel that you are not alone.

First ever coach trip for Adi!
But the greatest gift they gave me and David this time was a sense of freedom and normality. After a year of persistence by Sarah, Adi's Camp Simcha 'Sister', Adi actually went on a day trip without me or David!! We had an entire day to ourselves!. It was really, really momentous. This little girl who could not be separated from me for years went on a coach and spent the day happily playing and relying on someone else for all her needs!!

I can't say I relaxed much, despite trusting Sarah 100%, but I know that we will all benefit in the days to come. The first thing Adi asked when she got back was 'when can I go on another adventure with Sarah?'. Anytime you like my Sweetheart!!! Thank you Camp Simcha for a very special gift!!
Fun and games for all the kids!




Happy on the beach!

Thursday, 19 June 2014

Growth Hormones :(

We spent the day at Great Ormond Street today.

We went to see the speech therapist as Adi has a few problems with clarity of her speech and she needs some help with that. There is a possibility that she has a hole in her soft palate making her speech very nasal - not a major problem, she generally makes herself understood...particularly if she wants something, like any other 4 year old girl. But they are reluctant to take an x-ray due to not wanting to increase the risk of secondary cancer. These little things we have to think of now. Anyway, the good news is that her language and vocabulary is absolutely fine so that is good to hear.

We then had a meeting with the indomitable Dr Spoudeas, the endocrinologist, who's wonderful but always runs horribly late - 2 hours late today. Adi was a superstar but it was a bit of a nightmare. Dr Spoudeas does hormones - for Adi, when she had radiotherapy, her pituitary gland was probably damaged. It is the pituitary gland that controls growth and puberty, etc. If it was damaged then Adi will need hormone replacement therapy - which will involve a jab every day until she stops growing.

The upshot is that Adi hasn't grown in the last 6 months, indicating that her reserves of growth hormone have run out. In 4 months time we will have a horrible test for hormones, involving poor Adi going hungry most of the day, being injected with a hormone and having to give blood every 1/2 hour. Not looking forward to that. If, as expected, her hormone production is below a certain level (7) then she will need hormone replacement therapy. I guess we are quite well off really. We met a little boy today who also had a brain tumour and now has no pituitary gland. He will have to have complete hormone replacement therapy for the rest of his life! Adi will probably only need it until she is 15 or so.  I know she will get used to it but I am dreading it, both the test and the jabs for the drug - just the thought of trying to explain it to her is really, really hard right now.

Thursday, 22 May 2014

A normal family?

Last weekend was lovely.

Beautiful weather and a day on the beach. Have a look at the picture, you can see what Asher was up to! Something that was impossible only a few months ago. Adi couldn't really enjoy the beach, I was terrified that sand would get in her central line, she hated the shifting ground and couldn't walk on it...then there was the prospect of bathing her afterwards to get rid of the sand and all the trauma that brought. Having her brother bury her up to her neck in sand is really a huge achievement on so many levels  - emotional and physical.

The next day we enjoyed a community barbecue with friends. Adi was happy to play with other children by herself and did not need to have me within her sights. People who have not seen her for a while commented on how her confidence has grown. This week she has also  told me that she does not need me to take her into nursery any more as she is a big girl. She even allowed her grandmother to take her in to nursery one day this week.....something unheard of a few months back.

We can only think that she is feeling well now. This is our Adi coming out of herself and her true character showing. We are seeing new things all the time and I am certainly having to learn to let go a little bit more each time. It is wonderful to watch but I still can't ignore the fact that our life has changed forever and I still can't let go of the fear that it will come back....because it could and does in many, many cases. When people say 'she's doing so well, she's better now isn't she?' I have to decide whether to tell them the truth....that this doesn't just go away for us - we have the side effects to deal with and the threat of a relapse to live with. That isn't so easy - is it a burden I share? It's tough for us but other people can find it tougher and I don't want them to avoid us, so sometime I just smile and say 'yes, isn't she wonderful?'. After all, that is absolutely the truth too.



Wednesday, 30 April 2014

Adi's sponsored walk.

It's been a tiring couple of weeks. Last week we were in GOSH twice for ears and then eyes (no major changes so all good there), this week we have speech therapy and physiotherapy appointments. All this whilst trying to ensure Adi has a social life of some sort and I get my preparation done for my evening classes (I teach GCSE Science to adults and their exams are looming, so they are getting a bit anxious, as am I). Forget about the house, it's a pit right now.

However, the one gleaming, beaming ray of sunshine, as ever, is Adi. On Sunday she did her first ever sponsored walk to raise money for her riding stables: Chigwell Riding Trust. She loves it there and gets so much out of riding her favourite pony, Tansy.

She was so very proud that she was raising money to help feed and look after Tansy. Big brother, Asher, also walked the course with her. Our friends and family have been very, very generous and so far we have collected nearly £150!! Not bad for a first sponsored walk, eh?

With Tansy after the walk
With a little help from Asher

Taking her well earned rosette to
show her school friends.