Too Tired to Eat

I guess it was going to happen at some point but Leo is certainly more tired and more 'off' than normal. He's no interest is going out, playing actively, or even eating. He's quite happy to watch Handy Manny and Mickey Mouse on Sky+, and do the odd bit of drawing and colouring. He told me he only wanted milk today as he was too tired to eat.

Leo's eye is still very, very light sensitive and if it continues, we may see if we can get him back to the Eye Hospital before the next appointment on Oct 29th. We are back at the Royal Marsden next week so they may also be able to shed light on the problem (excuse the pun).

No Decision is Still a Decision..Isn't It?

As you'll see from the title of this post, no decision has been taken over the whole maintenance chemo side of things..but that's still a decision, isn't it? If you'd asked me yesterday, I'd have said, yeap, let's go for it. However, today, I'm all for not pursuing further treatment. Leo's been through enough and if doctors cannot say for sure that another 24 weeks of treatment will help, then why would we, or even , why should we put Leo through this?

PJ feels the same and his mind changes from day to day too, but then one prevailing thought is that if there's more treatment available, even if you've no proof it will work, then why wouldn't you choose the extra treatment? Extra treatment equals extra coverage surely? Wouldn't we all like to know that everything's been done which could be done... One good thing is we can start the treatment and if there are problems, such as Leo not wanting to take the daily chemo tablet or if he gets a risky infection too frequently, then we can stop.

Leo's on good form at the moment and being a totally 'normal' three year old. Throwing a fit in the middle of Harvey Nichols because he was tired, bored and stuck in his buggy..just your plain old normal toddler behaviour! But then take him to a toy store to spend some cash given to him by the cancer charity Macmillan, specifically for toys, and what does he choose? The most expensive thing in the place? Nope! A £1 plastic, stretchy lizard, of which he already has three!

He's probably neutropenic this week and as he still has his heavy cough / cold, all eyes are on this wandering temperature which keeps going up to about 37.8 each afternoon / evening since last Saturday, but then it returns to normal, of its own accord. It'll be interesting to see what happens once his immune system is next to zero.

We've another eye appointment to check Leo's sight on October 29th however, neither PJ nor I are hoping for much improvement. Unfortunately Leo was drawing pictures of himself this evening whilst we were over with Ainslie, Ben and Matilda, and the pictures all featured one eye completely coloured in black and one 'good' eye. Upon asking him about this, he said the black one was his bad eye and the other was his good one. Shame.. but hey, a Leo alive and healthy at the age of 40 but blind in one eye, or the alternative...which one would we choose?

Decisions, decisions...

Yes, it's all been quiet here and whilst I'd like to say there's been no blog postings because we've been terribly busy, well, actually, it's been the opposite. Our tiredness has caught up with us all at a time when 32 boxes of our life's belongings have arrived from Spain, Leo undergoing chemo, Leo's eye still being sore (but better) and the weather is so changeable, no plans can be made from day to day.

Leo did well but was very sick again with his chemo at the weekend. Decisions need to be made about whether he has the maintenance chemo which would last 24 weeks and include one daily chemo tablet as well as weekly IV chemo via his central line for three out of every four weeks.

There's pro's and con's for deciding one way or the other but as directed by his doctors, if you search for clinical evidence as to which way to go, you'll only see positive research results. However, if there were negative research, it doesn't get published so you can essentially take the positive published articles with a pinch of salt (as his doctor has told us). Plus the upside we can expect from continuing his chemotherapy would only improve his chances of survival by between 2% and 5%. So this would improve his outcome to 52% to 55%, if the research is to be believed.

However, our doctors are advising they cannot advise on whether we choose one path or the other as they are not convinced either way. It is fundamentally down to PJ and I, although actually, if Leo won't take a tablet every day for 24 weeks, then one could say that he decides whether this treatment continues or not.

The downside are the risks of major infection due to his central line and his immuno-supressed system which if he's in nursery, could make the difference between life and death. Ultimately, if we decide to go for it with the additional treatment, are we only extending his life artificially and therefore hospital visits, when we should perhaps have faith in the current treatment protocol, and have faith that he'll be in the 50% that go on and survive the cancer after 5 years. Having faith at a time like this is questionable though...

We also spent today at the Eye Hospital and unfortunately it appears the vision in Leo's right eye is not as good as his left. The reason for this is unknown right now as it's too early to be due to the radiotherapy as this should creep up on him over the next few years, but it could be that the cancer caused more damage to his optic nerve than first thought.

Today was the first of three vision tests where the eye docs have been able to assess the left and right eye individually, so today is basically a benchmark. Shame his vision is already going or more affected than we'd first thought, but having said that, if Leo reaches the age of 40, healthy, having kicked cancer in the backside, with full remission and no major side effects but can only see with his left eye, then we'll take that right now...where do we sign?

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?

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!

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

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...

Keeping an Eye on Things

Leo has had another good day although he wouldn't let the docs look at his eye properly today at the hospital. The up-shot is that the blood shot eye is still causing problems and he's particularly sensitive to light and he's wearing his hat pretty much all the time. Back to the hospital next week for more checks and we're keeping an eye on things...

I know I can be really gushy and over the top about Leo and how we feel about him (proud x infinity), but now's a time to be really proud about some dear friends of ours. Gavin and Claire lost their baby, Lillia, last year to a very rare lung disorder. Today they held their second Lillia Calthrop Tribute Fund Golf Day and as a tribute to their beautiful daughter, they've raised over £4500 for charity.

Claire was one of my bridesmaids and Gavin was one of PJ's groomsmen back at our wedding in 2004 (and gave us many smiles over the course of the evening!). They've been through so much this last year and a half and yet they've used a lot of energy, emotion and effort to give back to those amazing medical teams at the Bristol Children's Hospital and the Wiltshire Air Ambulance. As a direct result, they've raised thousands and thousands of pounds.

PJ and I have constantly looked at them to draw strength from their strength and in those first few weeks after Leo was diagnosed, it was Gavin and Claire who brought us food and homemade dinners. They're an example of people who think about others and we'll be forever thankful that we can call them our friends.

Long but Lovely Day

So Toddler Group for two hours, followed by Bristol traffic, followed by hospital for anti-biotics and blood, followed by lunch with my cousin, followed by shopping for PJ, more Bristol traffic (and alot of it), followed by some very cute painting, clay model making and a hand cast by Leo. An action-packed day and totally wonderful. I am absolutely tired beyond belief but it's been worth it, and you never know, I may actually sleep tonight!

When Leo headed to bed tonight, he said he had a present for me and proceeded to stroke my cheek and give me such a big hug. He then told PJ he'd have a lovely day and his favourite bit was painting with me this evening. I know every Mum thinks their child is a genius but seriously, Leo's drawings are simply awesome. Biased? Me? Never!!

Leo was fabulous at Toddler Group this morning. Much more chilled out than me as I panicked any time anything went near his mouth..like another child's teddy or another toy. He stayed quite close to me initially but very quickly strayed a bit further every few minutes. He kept looking back over his shoulder at me for reassurance but did really well. I had thought it would take time for his confidence to return. Better than me, for sure! I sat there like the 'billy-no-mates' I am, but finally struck up conversation for about the final 20 minutes. I did get the stares, as did Leo, as he took his cap off as soon as he was in the door; and I do think other mums and child-minders found it hard to start talking to me as it's difficult not to want to ask what's wrong with him. But then it's tricky to make small talk when there's such a huge topic of conversation you can just tell they want to ask!

Anyway, after the Group, Leo held my hand and walked the whole way home which is the longest he's walked without wanting to be picked up in over four months. Okay, so we're only talking about 800 metres but even so...that's a triumph. One small step for man, and all that! Perhaps because he felt relatively 'normal' for the first time in ages, he actually felt strong enough to walk home. In fact, I think he was quite proud of himself, as he should be.

Then it was back to the hospital for his final anti-biotic shot for the line infection. Back to the hospital tomorrow for a check-up on his bloods, the infection and also his right eye. It's still causing him serious problems; so much so, he's pretty much squinting constantly with it and complains about the lights being on in the house or car. We'll see what happens tomorrow.

I met my cousin, Nicola, for lunch in Bristol's brand spanking new shopping mall today. Cabot Circus opened it's doors at 10am this morning and we headed there at lunchtime! Manic or what? Anyway, a lovely lunch was had by all and she even told me her plan to do the GRIM race in December which involves cold, wet mud, a difficult army assault course, running, dragging yourself through lakes of mud and then, a bit more mud....all in the name of raising funds for Leo to head to Disneyland Paris. What can I say? Thank you does not seem adequate...

Leo is so excited about seeing Buzz and Lightning McQueen and he definitely sees it as signalling the end of his treatment so it will be great to think we may be able to do it sooner rather than later with the help of this fundraising. I'll post a bit more about GRIM and perhaps how Nicola and my other cousin Donna (who's going to run through mud in December with her), plan to raise funds. It may be called GRIM but it will lift the spirits and heart of a very grateful young, brave boy. GRIM by name...certainly not grim by nature!

Have got to head to bed or else I may end up writing a 'War and Peace'-type posting!!

Tomorrow's a new day...

Eye, eye...what have we got here then?

Leo's infection seems to be responding to the anti-biotics so that's good news. One more lot of IV anti-biotics tomorrow and he should be able to have a hospital free week or so, unless he spikes a temperature, or his eye gets worse.

His right eye (the tumour is on that side) has been blood shot for weeks now and getting worse, and today he seems to be closing it even when he's doing normal things. Of course, our concern is that it's clearly not an infection as he's been on anti-biotics and had anti-biotic cream and eye drops for the past four weeks. With such a blood shot eye which is now causing him problems, is there something going on behind the eye / in the optic nerve / in the tissue around the eye, which is causing Leo such problems? Good questions, but no-one seems to have an answer which is mightily frustrating and upsetting. We were brushed off with a nurse at a walk-in clinic telling us he had conjunctivitis a few days before he was diagnosed, when actually it was cancer, so we're desperate for someone to find out why his eye is like this now.

Let's hope his eye gets better and is just a symptom of his cold and the radiotherapy, although as I write that, I know it might not be as with a cold, you'd have bilateral problems with your eyes not just one eye, and the radiotherapy was also bilateral for 24 of the 28 sessions??? Answers on a postcard...