I want my hair like Daddy...

So after cutting his hair with scissors (not quite up to Vidal Sassoon's standards), Leo wanted me to cut his hair 'like Daddy' last night. It was a relief really, not because of the poor cut I attempted but more because it was Leo that made the decision to have his hair cut really short. I used clippers on number 2 and yes, he looks cute but as my sister, the copper says, she has probably arrested him or someone looking like him recently and definitely don't let him go into any shopping malls in a hoodie!

At least Leo's hair will grow back, at some point although I did read that it could grow back in a different colour and maybe curly!! We'll wait and see...

Went back to the Bristol Children's Hospital again for a top-up of the chemo drug Vincristine (Vinc) which is just one of many chemo (anti-cancer) drugs used for over 200 cancers known to doctors. Vinc is administered very easily via Leo's central line and takes only a minute or two. At the same time, the nurse takes blood to check his white cell count (WCC) and haemoglobin amongst other things, but they're the key ones. It was due to his drop in WCC last weekend which led him to having a spike temperature and treatment via IV antibiotics for five days. His drop in haemoglobin which leads to anaemia was what led to the blood transfusion on Monday. Hopefully due to where he is in his cycle i.e. day 14, his WCC and everything else will be recovering. So all looks good for Leo to be admitted as an inpatient again next Friday for another IVA chemo cycle which is three drugs specific to his treatment for rhabdomyosarcoma.

I wrote the whole protocol in my diary the other night and it takes us up to the end of the October, but only if he continues to be well enough to have his treatment, so fingers and everything else crossed.

Bald is beautiful

PJ has been telling me for years that bald is beautiful and it really is...we were trying to give Leo is oral meds (antibiotics for his infection of the line site) and when he sat up again, there was a mound of his long blond hair on my black top - no book on cancer tells you not to wear black when hair is falling out by the truckload.

It was a bit of a shock that a) it's already falling out as in our minds we thought it would take three weeks or so, and b) that it fell out so readily. You only have to smooth his hair down and a handful of hair comes with it!

So PJ cut his hair completely tonight and looks more handsome for it, having also had a shave for the first time in what seems like weeks; and then I cut Leo's hair too and he was fine with it. I'll upload some pics once I'm able. He looks younger but older at the same time, if that's possible. Plus I've told him his hair will be even shorter soon and then it'll grow back. He asked to look in the mirror and so I lifted him up, and then he started admiring himself!! Cheeky so-and-so! At least now as his hair continues to fall out, it won't be as obvious, or so we hope.

Docs & Nurses = Our Best Friends...

but how do you tell a 3 year old that he has to stop spitting and kicking at the doctors and nurses who are trying to treat him?

I guess because he did not feel unwell when he came to the hospital over 2 weeks ago, his impression of doctors and nurses is that they wake him up to take blood and give him meds, when as far as he's concerned, he's fine - and Leo is very up front about telling us, he's fine! PJ and I often wonder if it would have been easier for Leo to have been unwell but then in the next thought, you know he's seriously unwell anyway so to wish he was sick or whatever, simply goes against everything you feel as a parent.

Our friends have been awesome and members of our families have dropped everything to help us. The phone rang many times during the first week but people now feel they don't want to harass us which is fair enough. Having said that, PJ and I are keen to continue some semblance of normality, not that we have any as we have nowhere to live and have had to leave our fantastic new lives in Spain. So the offer to go watch the Champions League final tomorrow night is most welcome for PJ as he needs to be able to unwind as he's propping both Leo and I up at present.

Off to the hospital now and no doubt if Leo is feeling up to it, he'll want more painting and toys...oh, we'll watch Cars or Monsters Inc at least 3 times today! I cannot wait! Watching Leo playing, painting or relaxing watching the movies is a dream and I would not swap it for anything in the world.

Are you a member of this Exclusive Club?

PJ made a really good point this evening that when we give that knowing nod to other parents on the oncology ward, it feels like we're in this exclusive club..a club which none of us chose to be in and now we are, we need to deal with it and hope that once we leave it, we never want to re-join.

He also made a fantastic point that although Leo is having to go through this terrible journey but when we look around the other beautiful children on the same oncology ward, things could be worse. The awful situation of these other families totally put our journey into perspective and we both know that Leo can get through this.

Leo had dropped his haemoglobin as well as white blood cells so he's unable to fight infection as well as being anaemic. So he had a blood transfusion this evening which felt weird seeing someone else's blood making our son better. I used to give blood and will do so again for sure once I am able - I think I have to wait for six months to pass after my surgery before I can give blood again, but I will most certainly do it. I always thought the idea of giving blood was so simple - you go in, lie down, give blood, have a cup of tea and Rich Tea biscuit..and then go about your business. But I never gave any thought to what that act really means until today. Someone else's blood means our son can continue this journey and get better.

Thanks again for your support and keep your emails and cards coming!

But I'm fine...

So off back to the hospital now - PJ stayed with Leo overnight so I'm off to give PJ some respite.

We're just waiting on the bone scan results from last Thursday to see if the tumour has spread and also waiting on sults of chest X-ray from Saturday night. Plus we need to see if they're going to do anything with his Hickmann site in Leo's chest as it looks infected and causing him alot of discomfort.

Leo has been brave although if you tell him that, he says he's not! When he's well, he wants to go 'home' (to Clic House) or to Spain to the 'white house', although he did ask if we were moving to the red house yesterday! One day we will, we just need him to get better and then we can think about the future.

Day 10

So Leo's is suffering on day 10 of his first cycle of chemotherapy. He started chemo on May 9th and as would be expected, he was well last week, discharged from BCH on Wednesday, had two fab days with me and Granny whilst daddy went off to pack up our lives in Spain....only to spike a fever on Saturday afternoon which eventually led to a trip to BCH A&E dept with a fever of 38.5.

The really wierd thing is that neither PJ nor I were panicked or stressing, and indeed the doctors and nurses were awesome. The A&E was packed with standing room only (it was Saturday night at 10.45pm so that was to be expected), but due to Leo's situation, he has to be seen within 30 minutes. And we were seen in less time by both nurses and an Oncology doctor which was simply amazing. Within an hour and a half, we were up on the medical ward, desperately trying to encourage Leo to have some Calpol to bring his temp down...but he's a stubborn so-and-so, which everyone keeps telling us is a good thing!

We'll see what tomorrow brings. The Oncolgy doc I spoke with today said there may be some cause for concern due to a shadow in his chest and mentioned pneumonia, and then Leo himself has been saying his tummy hurts and when asked whereabouts, he points to where his Hickmann line enters his chest. The entry site has become more and more red and Leo has become more ill, so let's hope the antibiotics do their thing overnight.

Thanks for your messages of goodwill and all you support. Keep them coming as Team Leo needs every ounce of energy possible right now!