I thought I was tough until.....

Mom's are made of tough stuff. You have to be strong right?
As soon as you become a mum you become part of a special club. You've nurtured and carried a growing baby for well what seems like the best part of forever. You've endured the worst pain possible and brought that little person into the world. That's the first tough thing achieved on the motherhood journey.

Now I became an honorary member of this club three times with the arrival of Matthew madeleine and William. But somewhere along my journey I was chosen to be a member of a different club. A club where life isn't always rosy, where you're stretched to your limits and one where you have to be tough. A club where your baby will grow up being 'special'.

So here I was, a tough mummy.  I didn't realise I was a member of this club until Harry was 3mths old.
I was tough when they told me my baby had cancer.... Harry needed me.
I was tough when I sat by practically helpless as they pumped toxic chemicals into his tiny little body. So toxic the side effects could kill him, so toxic I couldn't even change his nappy without wearing gloves and plastic aprons. But he needed them to save his life.
I was tough when I saw him turn ashen and grey, and held him whilst they transfused blood into him. Several times. I thank God for blood donors.
I was tough when I saw that even me cuddling him was causing him pain and seeing him covered in bruises. I again held him several times whilst he received platelets. Thank god for those donors again.
I was tough when I realised the chemo was making him sick and stopping him growing and watched whilst they fed a tube up his nose and into his stomach. He screamed blue murder and pulled it out daily, only to have it put back daily.
I was tough when I had to keep an eye on his temperature, all the time. A simple cold could set back his treatment.
I was tough when I watched my baby struggle and fight off septicaemia - twice.
I was tough when I took him into theatre for his Eua and watched him struggle as they put him to sleep - more than 30 times.
I was tough when I had to leave my other 3 children for the countless trips to hospital, Lancaster Manchester and Birmingham.
I was tough when I watched harry go into preschool and left him. I had no control over those few hours.
I was tough when I soothed him after yet another bump or tumble.
I was tough when I registered my son as severely sight impaired /blind.
I was tough when I was told my child had a lifelong heightened risk of secondary cancers.

I had to be tough, I am a member of this "special " club.

Yet my toughness disappeared in a single moment last week. I was reduced to a blubbing wreck. Harry, out of the blue, told me "I can see mummy from this side of my eye (pointing to his right eye) but I can't see mummy with this (pointing to his left) and I can't see anything. Please can you fix my eyes mummy and get me new eyes then I can see"

Mum's are supposed to make everything better, mum's are magic but I can't make him better. And that's soul destroying. So I'm not really that tough after all.

A busy week

Well Monday dawned and all across the village several whoopee doo yells could be heard. Yes it was back to school day. It was also harry's first full day at preschool. He does a full day on a Monday, weds and Fri morning. So as you can see from the pic, they were all dressed in their uniforms and off they went. Back to normality, back to routine and back to not being able to empty the kitchen cupboards in a flash.
I miss them terribly, but I have to be honest and say I am mighty glad they are back so they can stop eating not stop. It was utter bliss not to hear the words "I'm starving" constantly.

Well Monday for harry went quite well. He was tired but seemed happy. Come to drop him off on Wednesday and he sobbed and begged to stay with mummy. Hmm, don't like this. He usually trots in Ok. He was peeled off me, but was fine after a few minutes after I'd left. He was the same on Friday, and even worse today. It's heartbreaking at the time but to give in will make it even harder next time. Perseverance is the key here. As my mum always told me "you'll enjoy it when you get there". Still heartbreaking though.

Matthew went off to scout camp on Friday for the first time. He had a whale of a time, was filthy and shattered and was pleased as punch with his walking stick he'd whittled and carved. Hmm don't tell daddy but he'd borrowed his grandads penknife and carved his stick himself. Can just hear the Omg from Mr riley. Well what he doesn't know won't hurt him as they say.

And finally a little giggle on Williams behalf. His homework this week was to fill in an information sheet about himself, drawing pictures of his family, saying what he likes etc. Well in typical William fashion he demanded to do it all by himself and off he went. His spelling was amazing considering he was only 5 a few weeks ago but what me laugh was the question that asked "is there anything that concerns you?" and he wrote beautifully "going upside down"

Not sure where that fits into the curriculum.

Have great week x

A little piece of history

Today, something magical happened and Matthew and madeleine witnessed it first hand with their grandad and biggest cousin. They saw 2 lancaster bombers fly past. They were amazed and in awe, though Matthew was a little disappointed they didn't drop bouncing bombs.

Madeleine, when they were first pointed out in the distance, thought they were birds. She wanted to know if the pilots could hear anything as they were so noisy.

I sadly didn't see them, but I heard them all the way in brookhouse and have seen fabulous video clips on Facebook. We will probably never see 2 fly together again and I'm so glad my children saw them. A part of history will never be forgotten.

HARRY IS GOING GOLD

September....  
It's the start of the new school year...
It heralds the end of summer....
It's been a year since I posted properly...
And it's the month to raise awareness for childhood cancer.

A few years ago I probably never paid attention to media about childhood cancer awareness month. I had 3 beautiful children and was pregnant with Harry. Cancer was something that happened to someone else. Right??? Wrong!!!

Fast forward to January 2011 and harry entered the world. Beautiful and perfect and for a while life was good. I must have been walking round with my eyes shut, as I didn't see the massive sledgehammer swing back and slam into me, knocking me for six and I still am trying to find my feet. All of a sudden we were moved from the safety of being in the elite group of people where cancer doesn't exist into the dark gloomy group of a family of a child with cancer.
Instead of talking about night feeds, sitting up, teething the usual baby banter.. we were discussing hospital appointments,  chemotherapy, fevers and blood transfusions. We watched helplessly as toxic chemo drugs were pumped into our tiny baby's body, as he grew weaker and needed tube feeding, as he fought off 2 deadly bouts of septicaemia, as we pinned him down for the numerous general anaesthetics.

Had I been a bit more cancer aware it might have been a little easier to bear. Had I taken more notice of those media campaigns it might have helped.

So it is with hindsight and the terrible journey we have been travelling on since Apr 2011 that I can stand up and shout out about raising awareness for childhood cancer. Too many children are taken by angels because of cancer, and although it is not a guarantee early detection can only give them a better chance to fight.
If only more people knew the signs and acted on them then even if just one extra child wins their fight then raising awareness is absolutely the right thing to do.

We don't want to scare people, we don't want them to think every illness is something sinister but just knowing the signs and trusting their instinct may be the difference.

So for September,  Facebook and Twitter and any other social media is going to be flooded with messages from people like me. I have pinned gold ribbon to a beautiful picture of harry. He is beaming, but his eyes betray his condition. He has grown up with cancer it is all he has known. He has never known what it is like to have perfect vision, he will for the rest of his life be monitored for secondary cancers, heightened risk because of the faulty gene he has and because of the chemo we gave him to save his life (ironic isn't it) but he is happy.

He has grown into the strongest bravest boy I know, when you feel a bit sorry for yourself he makes you pull yourself together and think why, when after all he has been through. He bears no grudges and still says he loves me. He has taught me to live for today, and worry about tomorrow when it comes.

Childhood cancer receives little funding for finding cures compared to adult cancers. Many adult cancers are lifestyle related, but yet little is known why some childhood cancers happen. After all, children are just born,  they haven't smoked or been in the sun too long etc but we need to change our thinking. Children are the future, and surely savings a child's life so they can grow into an adult to keep population going is only a good thing, so that's why keeping childhood cancer to the forefront is important.

Raising awareness can save lives. Don't think it will never happen to you, I did and how wrong was I.

On our way to brum

Harry is so taken with motorway travel, he falls asleep everytime. We are on our way to Birmingham for the dreaded Eua tomorrow. Things have been clear and dandy for quite a while so not expecting any surprises but we will not be complacent. Hated saying bye to the others, it's only overnight but I still miss the little imps. Update with news tomorrow x

Be right back......

I sincerely and heartily promise that I will do a long update tonight when Mr R is in work. I cannot believe 6mth has passed. My blogger app has changed so much I think I need a lesson in how to use it!! It didn't help that little fingers had sent it to phone hideout so I guess out of sight out of mind lol so see you later xx

Champions

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