Thursday, October 02, 2008

Cotton wool anyone?

Went to see a lovely nursery for Leo today and he enjoyed it so much, he didn't want to leave! Typical! We hope to sort him out a place there soon and the nurse we spoke with yesterday, and his consultant has always maintained, that the consensus has changed over the years about children with cancer and school / nursery. The risk of infection is high, but the upside is the stimulation, social and emotional development and the time spent with peers. Children ten years ago would have been wrapped up in cotton wool, and actually that's also still an option..not a realistic one, but an option all the same. However cotton wool is no barrier to infection or cancer!

More chemotherapy tomorrow; his 8th cycle of 9. Has time flown or what? Or has it dragged so much I cannot believe we're here already? Funny because one minute I'm remembering picking the boys up the day before my surgery, and that feels like yesterday, and then Leo has cancer and that feels like ten years ago. Have we really only been back in the UK since the end of April?

Plus we'll find out more info about the whole maintenance chemo side of things tomorrow. You'll know this has been playing on our minds for weeks and months, and so we hope that we'll be able to find out all the details, or at least most of them, so as we can start to make an educated decision about Leo's future.

Tomorrow's a new day...and looking forward to it. After tomorrow and this weekend, Leo's treatment has just one cycle left. Boy, has he done well and as a friend of mine has said, he has smiled through most of it. If it were you or I, would we have been as composed as him?

Wednesday, October 01, 2008

Lost and Found

Isn't it amazing that the news is full of terrible things going on around the world..it's all doom and gloom, isn't it? How many times a day could the media make us think the world is full of bad people? And yet...in the space of 36 hours, I have met and been in contact with countless people, known and unknown to me and our family, who have shown such acts of kindness, I have probably cried more these last couple of days than I have since Leo was diagnosed (well, nearly anyway!)

At the Eye Hospital in Bristol yesterday, this rather more mature lady with a walking frame offered to help me as I bent down to pick up something I dropped, whilst I was carrying a sleeping lion (Leo?!) Seriously, I am not sure she could have actually bent down or helped me with Leo, but the look in her eyes was that she really wanted to help.

Also at the Eye Hospital, the pharmacist could see I was struggling so came over to give me the prescription as opposed to me having to go to the counter under the weight of Leo. These people were going out of their way to help me, albeit it was obvious I was struggling, but twice in one day to be offered help?

This was the offer of help from people unknown to me. Today, I was reduced to tears (again) by the most amazing kindness of an old friend from school with whom I have had little contact, except Facebook, for over 17 years. Matt Tombs was always a good guy. We all knew that! A while ago when he heard about Leo's cancer, he offered to promote and do a gig to raise money for a holiday for Leo and funds for Clic Sargent. Now we're nearly on the home-straight in terms of treatment, I gave him the nod and said we're now ready to think about fundraising. Well, to say he's on the case is an understatement. Looks like we'll be having a full-on day with face painting, an auction, a fully licensed bar, bands, open-mic and much more. Amazing...just amazing, and all this from a lost and found friend who has a huge heart. Once we know where and when this will be, details will be here so if you'd like to come along for some fun and fundraising, the more the merrier.

Today the most lovely Clic Sargent Community Nurse, Caroline, came to the house to take Leo's blood. It's always checked before chemo to make sure his he is well enough to have the chemotherapy. Caroline was such a lovely, warm lady..well she'd have to be to do the job she does. Clic Sargent, the awesome charity for kids with cancer in the UK, pay for this service which will now help us a significant amount on a weekly basis. Her visits will negate the need for us to fight the traffic, find a parking space at an already over-burdened hospital and then reduce the risk of infection for Leo by reducing hospital time as that's where most infections manifest. This service will help Leo keep as comfortable as possible in familiar surroundings, by coming to the house to do his routine tests. She can also answer my questions, and that's alot of questions, over a cup of tea whilst Leo sits drawing, playing or watching TV.

In terms of Leo's eye, his cornea was raw and very dry, and past where other 'normal' eye drops would have helped. So we're back to the antibiotic ointment and within a day of using it, Leo is still extremely sensitive to light and so wearing his sunglasses and hat inside the house BUT it's looking much easier for him and less blood-shot, thank goodness. The doctors had talked about further imaging (MRI etc) to see if it's tumour related yesterday, but fortunately the eye doctors were more easily convinced the problem is radiotherapy related. Phew!

Monday, September 29, 2008

GRIM

It's Nicola, one of Helen's cousins here.

Donna (another cousin) and I are planning to run in the GRIM on Sunday 7th December. This is an 8 mile trot through the Surrey countryside, just a few mud baths and cargo nets to negotiate!! See the website http://www.grimchallenge.co.uk/.

It is "grim" but nothing compared to what little Leo has endured over the last few months.

We would like to do this to kick start a "Leo Fund", raising money that can be used to send Leo on a trip of a lifetime to Euro Disney to signify the end of his treatment, and / or, if the fund gets big enough, to be saved as a contingency for any future treatment that may be required, and to be given to CLIC Sargent at a time when the fund may no longer be required so as other children and families can benefit during diagnosis and treatment.

I must stress this is not being set up as a charity as you cannot set up a charity for an individual, this is a way of raising money through financial gifts.

It would be great if others could join us and run as "Team Leo" all raising money. I am happy to organise, just drop me an email to nkdale@hotmail.com.

If you don't fancy running with us, perhaps you could consider sponsoring us so that we can get Team Leo's fund well and truly underway.

Nicola

Sunday, September 28, 2008

Relatively Normal...

We've had a nice weekend, spending quality time with friends who have children who Leo adores and has known all his life, and so both Leo and us adults have been able to get a feel for normality back in Bristol.

Leo has started to get exceptionally tired today and over the course of Saturday but being the stubborn child he is (not sure where he gets that from??), he was determined to play with Charlie and Maisie. The minute we got in the car to return home yesterday and today, Leo's eyes shut and he was asleep before you could say 'Home James'.

Leo's eye is still a cause for concern. When we've been home over the weekend, we've had to resort to staying in the bedroom with the blind shut as the rest of the house is lovely and bright, but not so lovely for Leo and his eye. The docs will check his eye again Tuesday and so until then, it's a waiting game, and my gut instinct is that it's radiotherapy related and so nothing bad to worry about (she says..even though it's worrying every particle of my being!!) I guess because it was his eye where the symptoms of his cancer first started, it's a worry. Plus because he's had this problem for weeks now and no doctor has given a definitive treatment or diagnosis, it's difficult and only natural to worry...isn't it?

Five more days until his second to last chemo cycle and then only three weeks after that and it will be Leo's final chemo for this protocol. We're seeing Leo's consultant here in Bristol on Friday to discuss the how's, why's and why not's of the maintenance chemotherapy, in the sincere hope we can actually make an educated decision.

Here's the dilemma...there's no evidence the maintenance will help and there's no evidence that it doesn't. Okay...so why would we consider it? Well, as parents we'd like to know that Leo has as much medicine thrown at this bl**dy cancer to give him the best chance of survival and cure. However, are we just treating our fears if we choose this path purely based on this?

The other major issues which we'll be able to discuss on Friday are the actual drugs and how they'll be administered. I think I've probably said before that we need to weigh up the risk of leaving his line in his chest for a further six months. Most children who die during treatment, do so due to infections. And unfortunately Leo has had a staph infection every cycle so this could be a major risk. If the chemo is tablet based, urm...well... would Leo, a determined, independent 3 year old, be happy to take a tablet every day? If it's liquid based and requires an NG tube in his nose, will he tolerate the tube or rip it out on a regular basis?

Anyway, all these concerns and too many hours each day to contemplate them so let's leave it there, shall we?

Tomorrow's a new day...