And Yet More Hospital Visits and Unwanted Temperatures...

Not a week goes by it seems without more unscheduled hospital visits and so last week Leo had another chest x-ray due to his on-going cough - x-ray was clear but to go back if he continues to lose weight and his chest / cough does not clear up.

Then Monday upon picking Leo up from school, his right eye was bright red and bloodshot, and it wasn't like that in the morning. So yet another conversation with the oncology day-beds unit who said they'd see Leo down in the kid's A&E department.

We all knew it was a simple viral conjunctivitis again but because it's his right eye, we need to make sure the infection does not take hold. He is more susceptible to these eye infections as we were reminded a few weeks ago but it does feel like it's one thing after another Leo. Having said that, he does take it all in his stride!

Today his temperature has started to creep up again but then his eye seems better with the ointment so not sure what the next few days have in store for him.

Updates and Baldy (including pictures)

Lots has been happening this past week.

Leo's enjoyed his Gramps's birthday and spent some lovely time with Nan and Gramps last Sunday. It's PJ's turn to celebrate a birthday this Sunday and Leo's been busy drawing and making birthday cards for him.

We've also been to the hospital again today for an unscheduled check-up. Leo's chesty cough seems to be not getting any better plus he seems to be losing weight so his consultant asked us to take Leo in for another chest x-ray, just to be on the safe side. Nothing untoward was found on the films and so it's life as usual. I guess the good thing is this wonderful sunny weather means we can encourage Leo to spend lots of time outside, which hopefully should help get rid of his chesty cough.

And then there's been some more fundraising and this time in aid of finding a cure for childhood cancers. Patrick O'Hagan is a Chicago cop who is a member of our extended family, helped PJ and I massively when we lived in Chicago all those years ago and has also been very supportive with lots of messages of good luck and best wishes since this whole adventure started for Leo.

Now whilst a cure will never be found for Leo - quite simply, there's just no money in finding a cure for Leo or other children like him as so few children get this type of cancer so the concentration for a cure is for those with leukemia and more widespread cancer.

Patrick, being the kind-hearted man he is, has joined an amazing charity St. Baldrick's. They fundraise with the main wish to help fund a search for a cure and help many, many children and Patrick had already helped them with some fundraising this time last year, so before Leo was diagnosed.

So this year Patrick's fundraising has taken on a bit more impetus now he knows of Leo's situation and he's raised over $2000 and you want to know how? The clue is in the name...St. BALDrick's!!!

Before and after pictures are above - enjoy! Well done, Patrick. Hope it grows back in time for you to do it all over again next year...it's all for a good cause!

Why?

We all know that children get to a certain age and then eveything they say ends with 'why?' And today, Leo and I had a conversation of why this and why that for about 40 minutes. Some of it related to why do people get sick and why do we need hospitals and why is Mummy tired today? I think Mummy is tired today because of all the questions!

I've also spoken at length with Leo's school who have been nothing but absolutely supportive towards us. They completely appreciate that given what Leo's been through, he was bound to have some sort of 'issues' at some point. Sooner rather than later, I say, as it means we can deal with his anxieties now before the have time to manifest themselves in other more worrying ways.

We probably all need to work on our anxieties and ensure we do a better job of shielding Leo from our concerns and so, from now on, no conversations with other people about Leo and the future will happen in front of him. He doesn't need to know what may or may not happen in the next few months or years and so why let him hear it ... he needs to know what is planned with his doctors so if we have a scan or an eye hospital check-up, then clearly we need to prepare him for these events. But things beyond our control such as relapse can be protected from him.

And now for something a bit more light-hearted. A video of Leo and his fixation with chocolate.

Enjoy

Happy Days and Chocolate Face

Leo's been a happy soul this weekend and today, this happy behaviour has been interspersed with some things he's said which are a cause for concern such as not being able to breath and how he wants to be a baby again because then he won't be sick again. So tomorrow Leo is back to nursery school in the morning and I am on the hunt for some answers on how to help Leo with his bouts of anger and anxieties.

What, If Anything, Is Going On?

So I get to school to pick Leo up on Thursday evening and I'm asked to speak with the Deputy??? It was very strange, as anyone will tell you, it feels like you're back in your own school days, not those of your 4 year old son.

After discussing how traumatised Leo was when one of the other children was showing a photo of their new baby sister who had a tube in their nose, we then had to discuss a horrendous incident which resulted in Leo biting the Head and both punching and scratching one of his favourite teachers.

Now this kind of behaviour was last seen when Leo was first diagnosed last May, when he was incredibly angry with me as he blamed me for being back in England and could not understand why I had been in hospital and now he was. We managed it then with some useful anger management strategies including telling him it's okay to be angry and that if he wanted to hit something, he was to hit a pillow. Very quickly, but not easily, his anger calmed.

However on this occasion, he's hitting out at other people with whom he has built trust and also happy relationships. This incident is also built on the fact he's been more clingy with me over the past 10 days, certainly has a cold plus has repeatedly said he'd like to go to hospital because he's sick again. Unfortunately he also started telling me he had a big eye again (but there's no obvious swelling or poking out of his right eye at this stage so no dreadfu concern but partner this info with everything else and you cannot help but have awful thoughts going on).

To add to this, he has a cough and today he asked me to turn the CD off in the car because he wanted to tell me that sometimes he feels like he cannot breath?! (Do not panic, H....ask him another question with no sign of concern....; this was my internal chat with myself once he'd said this). And so he went on to say he sometimes feels like he cannot breath and it's not his cough and so I asked if he had pain anywhere and he said his neck hurt. All a bit odd and not really what you want your 4 year old son telling you.

During the incident at school, he had also put his hands round his own throat and was saying 'you're hurting me, you're hurting me', which we had taken to him trying to get a reaction from his teacher who was trying to calm him down. But now, with this further info from Leo today, I now have a niggling thing going on in my head about whether he really has an issue with his actual neck, or is it because of the cough? His food intake is down but he is drinking so perhaps this indicates little or no throat soreness?

Anyway, if we try to get our heads around it and try to be rational, then those awful irrational thoughts always force their way in.

So we hope to be able to speak with his oncologist on Monday as well as meeting with his school, who have been supportive since Thursday's incident. With luck, we will be able to also be put in touch with the hospital's children's psychology team who can advise us all on some strategies to deal with any further concerns, anxiety and anger which Leo may be have.

The Ups and the Downs

The Ups - events like last weekend in Uxbridge with my old school friends and seeing Leo's smiling face when the bands were singing and then someone started playing drums, and he was beside himself with excitement about these new rock stars!

The Downs - the on-going coughs, the endless cold which we're never sure will turn into an infection again, the coughing up of phlegm then promptly swallowing it again - and yes, all these things are perfectly normal childhood winter things / issues, but our senses are on edge at all times. And so if he continues to have low grade fevers and getting so very tired and not really wanting to do much, then at what point do we call his doctors? I guess we'll just know.

Bless him, Leo keeps saying he needs to go to the hospital because 'I am sick, Mummy' and then follows this up by talking about his big eye and small eye??? Panicking...me? You bet! But enjoying Leo and what he brings to us every day. His smiling cuteness, his funny jokes, his singing and dancing and his energy when he talks about rock stars!!

Rock n' Roll Baby!

What an awesome night was had by just about everyone at the Abrook Arms in Uxbridge last night!

Leo loved it and everyone involved was buzzing. Matt Tombs, who organised the entire event, with the help of loads of musicians, and Martine and her mum at the pub, have all done such a stellar job to raise crucial funds for Clic Sargent, who in this economic state just like other charities are being affected.

The total raised on the night so far was just over £1500!!! What an awesome effort and thanks for all involved.

Leo will forever worship Rock Star Matt, who will forever be fixed in our hearts for his mighty fine support, belief, discipline and all out 'let's do this' attitude.It's a massive credit to him personally that so much cash was raised and that so many people turned out for the big night.

Thanks to all.

H x and Leo xxx

The Ups and Downs of Post-Treatment

A strange and very long week for all but it's another week gone by and nothing horrendous has happened. Although Leo is quite tired and full of cold, he's enjoyed school this week, albeit he spends all day in the art room and was fantastic with the doctors and nurses on Wednesday.

On Wednesday, we had his monthly follow-up with his paed oncologist. This is the one doctor who Leo would always play up in front of during his treatment and until the turn of the new year. This is purely because we only ever saw him when there were tough decisions or bad news to be shared and digested. This doctor is softy-spoken, very kind and very detailed in his approach to sharing information with us about Leo. He totally understands that he is also treating PJ and I and our rational and irrational fears, especially now that Leo has finished treatment.

So what have we learned this week? Well, a few things were purely a reminder of what we'd forgetten we already knew...such as the fact that Leo is really susceptible to right eye and sinus infections, just like the one he had at the end of January / beginning of February. The penny dropped when his doctor reminded us of this, as we had been told this by his radiotherapy consultant last summer when we met with him, but of course, we're given so much information and so many details during the course of diagnosis and treatment, that things get lost or forgotten along the way.

I asked if we'd always have to go via our GP for treatment when he next gets sick with his sinuses and eye, and reminded the doctor that the GP had told us there was nothing wrong and if anything, it was all just 'normal' childhood illnesses and that I shouldn't be 'so paranoid'.

Thankfully, his oncologist was sympathetic and said most GPs never see children with cancer, never mind someone with the cancer Leo had. Plus actually, each time he gets this infection, because let's not kid ourselves, he will get sick with another one, we should always be seen by his oncology doctor at the hospital. Leo will most usually have to be treated aggressively with IV antibiotics for a day or two, followed by a further week of oral drugs. So thank goodness his doc appreciates the issue parents and children have with the odd GP who just doesn't 'get' it!

The second thing discussed in detail was relapse. Detail in terms of what we can and should be looking out for. Sadly, there's not much can be done if or when a relapse happens as we've always known care would be purely palliative. But heaven forbid, the big C decides to make a comeback, it's likely to occur in his lungs / chest. However what we learned this time around is that as parents we cannot look out for any obvious signs this has happened or starting to happen. Doctors will only know in the quarterly chest x-rays, the next of which is next month. In a way, this is a good thing as it means we don't have to be constantly evaluating any symptoms Leo is showing. On the other hand, you live in the shadow of having no control and never knowing what's happening inside our son's body.

The other major symptom which will be very obvious is if his eye starts to pop out of the socket again. We've seen it before and so will almost certainly recognise the symptoms. Luckily (?) he has had the maximum and most aggressive radiotherapy that he can have in this area in order to try to provide local control of the tumour so fingers crossed it has done the job.

And then here's the surprising bit of our meeting from Wednesday; the third way he could relapse is via his blood / bone marrow. And so as parents, if Leo is very poorly, lying on the sofa or not able to get out of bed for 10 days or more, so really very sick indeed, then we need to seek further help. Simple blood tests and bone marrow aspirates will then show whether he's just got the flu or he has relapsed.

We feel happier knowing all these details even though we'd rather not have Leo ever bee in this position. But thankfully, Leo is smiling and laughing alot. He's living life and enjoying nursery school. He even remembered events and things which happened before we moved to Spain today, which is lovely to hear him talking about things such as our cat we had back in 2007 when he was only just 2 years of age. It's nice to know he does not dwell on his cancer probably because whilst he knows he was sick, it does not resonate with him as much as it does for you and us. It's also nice that he is feels secure and really rather settled in the UK; he does not talk with sadness about Spain and whether we're going to return. That makes us happy.

And so to tomorrow...Leo and I are off to Uxbridge, which is where I grew up when we returned from the USA as a young child. The reason we're going is that some school friends of that time in my life, have gotten on and organised an awesome line-up for a live music fundraiser. Many do not even know our family but Leo's story has reached them and Matt Tombs, an old school friend who I've not seen or spoken with for 17 years, has been manically organising the evening which is going to raise some much needed cash for Clic Sargent. The current economic climate has significantly affected Clic's funds and so we're thankful there are people like Matt on this planet.

Photos and updates of the night will be available here ASAP.

Thanks again for your supportive messages this week and please know we very much appreciate your prayers and thoughts for Leo and all the other people affected by cancer.

Thank you.

H xxx

Reprieve

The best way to describe we're feeling is how my Auntie Lily described the news that Leo's scan results showed no changes from the previous one; it's a reprieve.

We know that if the cancer is going to grow again then it wouldn't wait for a scan to show itself and also we know that if they'd been able to operate and surgically remove the bit left over in his head post-treatment, then perhaps we wouldn't be so nervous day-to-day. Don't get me wrong, we're not living our lives thinking he's going to relapse but there's always that risk. We live with those thoughts from time to time but a day never goes by without wondering if life has something different in store for Leo soon. If he complains of a head ache or if he says his neck hurts, then it's perfectly normal for us to worry perhaps more so than if he'd never had cancer.

I wanted to thank you for your support during the past weeks also. We could not get through this time without the emails, texts, cards and phone calls so thank you. We're also more than aware that we're not the only ones going through this. Other families will have had that awful news today, and another family tomorrow; in fact, in the UK, 10 families every day have their world fall apart due to childhood cancer. Whether their child has just been diagnosed, just finished treatment or whether they've relapsed, our hearts and thoughts are with all those families also.

So we'll take this reprieve, thank you very much. We're seeing Leo's oncologist tomorrow so must write out our questions this afternoon so we cover all our concerns and queries. And then the next test is the chest X-ray in 6 weeks time.

Right... off to school for Leo now where we mainly plays in the art room...we'll make an artist of him yet!!

'Unchanged'

Happy and relieved to report that we finally have the results of Leo's second post-treatment MRI scan - it was 'unchanged' (doctor speak for still the same) in comparison to the scan from mid-November.

Short but sweet. Nothing more to say. Phew!