Saturday, 7 September 2013


I use the blog mainly to keep an update on Harry's journey and what a superstar he is with his fight to overcome the evil 'c' word. I sometimes mention his siblings, but just because they don't appear here as much doesnt mean they men any less to me than Harry.

Anyway,the fantastic charity CHECT (Childrens Eye Cancer Trust) had organised a family day for the northwest region to be held at Blackpool Tower, with a trip to the circus. I jumped at the chance to get tickets. I thought my littlies would have a fantastic day out and it would be great to catch up with other Rb families.

I wasn't wrong, it was a fantastic day. It was organised brilliantly, and we were given the run of the Tower with access to all areas, courtesy of Merlins Magic Wishes.

The day kicked off with a superb lunch and a chance to meet the Chect Champions. These can be a child with Rb or a family member, someone nominated by a Chect family member.

Thinking hard, and casting my mind back to the hardship we suffered whilst Harry was on chemo, I decided not to nominate Harry, but to nominate Matthew.

He has been a tower of strength for the others whilst I've been absent at the many hospital appointments, put up with disappointment after disappointment as Harry's treatment and illness came before many plans we'd made for him and still he managed to smile and love and protect Harry, basically being the best big brother any child could wish for.

A couple of children with Rb received their awards and Matthew selflessly asked, 'When will Harry get his?' You can imagine his surprise when it was he and not Harry who was called forward to receive an award. I was bursting with pride, as the guy presenting him with his award said 'a true Chect champion'

Don't get me wrong, I think all my children are champions, and each deserved to win an award, but a teeny bit of me was secretly thrilled that Matthew won one, it always seemed to be him who missed out the most.

He was even more thrilled when his name was announced as a Chect champion during the circus performance. Well done Matthew.

Now for those of you who don't know the tower, its a rusty looking miniature version of the Eiffel Tower, situated in one of the most outrageous towns in the UK. The children were amazed at the sights, they couldnt believe grown men were walking round dressed as superheros/ladies/babies/animals .... Anyway the tower is the main landmark of the town, it houses the famous Tower circus and the Ballroom, as featured in Strictly Come Dancing.

Here's a pic of the tower.

After the lunch and presentations we took the lift to the top of the tower. Before we got there, we were allowed to see the 4D cinema experience (unfortunately pretty useless to people with Rb, especially those with enucleations)but it was en experience all the same. It was the first time mine had experienced 3D, (the 4d part was water and wind sprayed at us) and to see them reaching out trying to touch was funny, and to see them cower and move out of the way as it was soo real when we seemed to be plunging into the sea, or the spike of the tower top looming out towards us was funny too.

They seemed nervous about stepping out onto the top platform, especially the clear platform that makes it appear you're suspended in mid air but that was gone in an instant when they stepped out of the lift door. They were amazed and fearless

We then spent a wee while in the penny arcades before going into the circus. You can imagine my despair when I found out I couldnt take Harry's pram in. How on earth would a 2 year old sit still for the whole performance. I neednt have worried, he was an angel, as were the other 3. They loved every minute of it, laughed at the clowns, looked on in amazement at the acrobats and were rewarded with one of the exorbitantly priced neon flashing toys and a tub of ice cream. But to see them happy, was reward enough for me.

Now my title referred to Champions, and Matthew was awarded a Chect Champion award. But to me each child there,and every other child with any type of cancer, whether dealing with Rb or the cancer or just a family member is a champion. Cancer whooshes into your life like a hurricane and rips everything you knew as normal into pieces. It devastates the life of the child dealing with it, they suffer massively from the actual cancer, its treatment and after-effects. It devastates the lives of the families of that child. Being helpless and not in control of whats going on, looking on as you watch them endure the painful treatment, pinning them down so they can be punished with something that is trying to make them better. Seeing them as they look at you and question 'why mummy?' and not being able to answer them. Seeing updates from people you met where their child was taken by the angels, all of it devastating.

So as September is Childhood Cancer awareness month for the US, I think every minute/day/week/month should be awareness time - worldwide! Children don't stop getting cancer just because its October or March and people should be aware of symptoms year round as early diagnosis can be the difference between life or death.
Dont assume it happens to someone else, as I can assure you IT DOESN'T. It happened to us. Our hurricane whooshed in, and we are still feeling the after shocks from the storm. They won't ever go away, we are just learning to deal with it a little better. This month marks the 2year anniversary of the end of Harry's chemo. Some people assume that as chemo is finished, the cancer is beaten. In some cases it is, in Harry's it isnt. Each month he remains stable is fantastic and the older he gets the risk of new growth reduces as retina growth slows down, but EACH time he grows a new retina cell, it could be a cancer cell. Thats why he still goes for his EUA's so often, thats why he is put at risk of general anasthetics so often so we can keep a check on it.
Thats why the meet ups and facebook groups are so important to us, we are like one huge Rb family. We all know what each other is going through and they are a fountain of knowledge and support. Wikipedia can put it in black and white what Rb is, but its the 'realness' that helps more.

I posted the following on our Chect facebook page. I just thought I'd share it with you..

Everybody hates Rb and wishes beyond wishes that it was never part of their lives, me included. But I was brought up to always look on the bright side and look for the good in anything, so if there is any good in life with Rb it has to be...
1) I would never have met such wonderful people like you. I can speak my mind 're Rb and you all know how it feels.
2) if I had to choose a cancer then Rb is probably one of the "better" ones. Survival rate and quality of life beyond Rb is at the higher end of the scale.
3) Rb is rare, only 30-40 cases diagnosed each year. Harry being diagnosed saved one family from having to suffer. I would never wish it on him and I am not glad he has it but I am glad another family does not have to suffer the anguish.
4) I would never have met such wonderful ppl like you.... Oh I already said that

Ok there isn't much to be glad about and there isn't really any bright side to Rb and I cannot help fretting over the next EUA and I wish I could stop playing the 'what-if' game (what-if he's not stable any more, what-if he loses an eye etc) but our lives were dealt this blow and deal with it I must. I am just so thankful I have the wonderful support of you lovely folk, as to know you're not the only one makes your journey just a little bit easier.

I am going to love you and leave you. I have a zillion labels to sew in new uniform for their new school, I'll blog about that another day xx