B is for Blood

We've had an improving few days on the energy front. This morning we've even had 'circle time' with PJ, Leo and I doing a bit of dancing and then sitting down to sing the alphabet for about an hour with Leo as our teacher. Each time we got to the 'now you know your ABC, next time will you XXX' Leo changed the final sentence to say things like 'swim in the sea..with me?', or 'have a cup of tea?' It was so nice and really warms our hearts that Leo loves learning and being in charge!

'A' therefore is having an 'absolutely' fabulous morning.

'B' is for blood of which Leo had his fifth blood transfusion on Wednesday morning. Unlike other transfusions, we think whoever gave this blood must have been quite a laid-back person as it's only today, 48 hours later, that Leo has some more energy. Although we have been giving him an additional dose of this stuff called Polycal in his milk to ensure he has a few more calories every day. It's tasteless and boosts his calorie intake without him knowing. He's still not eating well, if at all, and can count four small things that he's eaten since Wednesday evening, but even that's an improvement.

So if by next week he's still not eating properly, the doctors are going to put another naso-gastric (NG) tube up his nose and into his stomach so as we can at least get some proper nutrition into him. Unfortunately the 3 months he's been living on milk has now caught up with him and we're waiting on the dietician to come back to us about his iron levels. It takes a very long time for iron deficiency to happen but it sounds like that's what's happened now. If this continues it can create long term problems with concentration and memory so add that to the late effects of the radiotherapy and this could be a serious issue. So let's wait and see... Just goes to show that just because the final chemo weekend has come and gone, it's not all finished just yet.

We're also still checking his temperature way too many times to mention as it keeps spiking and even went to 38.3 yesterday and despite expecting another trip to the A&E and subsequent stay on the ward again, the temp then came back to 37.8 and stayed there. Phew!

Thanks for your messages if you enjoyed my last posting. I think I cried all through writing that but it's been the easiest post to write so far, and has had an effect on many people, which is what I wanted from this blog. It's a dream of mine that other families with children in Leo's position can read this and take some comfort from it. So what I'd ask is if you know anyone who would benefit from knowing about Leo and his battle with cancer, then do feel free to send them a link to this blog.

Leo is an absolute inspiration to us so if we can share that with others, it's even more of a privilege to be his mum.

Yes You Can

Can we expect a first class health-care system which looks after our children to the best of their ability here in the UK? Yes you can!

Can we expect a mighty kick up the backside when cancer decides to take a bite? Yes you can!

Can we sometimes thank cancer for rearing its ugly head into all our lives to put things into perspective and see life for what it really is? Yes you can!

Can we expect the guys who do our car's MOT to use the rear seat-belts to ensure the safety of Leo's Winnie the Pooh teddy and Po of Tellytubbies fame? Yes you can! And how cute? True story; happened today and reduced me to tears!

Can we be completely shocked and ever so thankful when complete strangers offer advice, sympathy, a shoulder, friendly emails and even fundraising after they learn of our brave son's battle against cancer? Yes you can!

Okay, so I may be getting very carried away on the Obama train right now, but hey, isn't that what we're all here for? Let's get carried away. Let's dream and then set about making those dreams happen. And having fulfilled some of our family dreams and had others mightily dashed, I wouldn't have it any other way.

One thing that this lovely roller-coaster of a ride we've been on has taught me is that life is overwhelming at times, but it's how we deal with that which matters.

How many times have we wanted to crumble?

How many times have we been angry at each other?

How many times do we search Google for any glimmer of hope which the doctors have missed or an all-new, awesome treatment which will offer Leo and other children like him a cure?

Too many...but...these things always happened before but we thought of them as much more mundane because we weren't experiencing the daily feelings of fear that our son may not live to see his 9th birthday.

Yet from this point on, and you can remind me of this at any time, I am not going to allow that fear to ruin our lives. I promise from this point on to use that fear to strive for the best life we can give our son. I will also strive to ensure other families and children affected by this horrid, horrid thing called cancer, are able to continue to get the best care, support and love from people around them including Clic Sargent.

Can we be thankful that there are people who care enough to organise a Golf Fundraising Day at Leo's old school in Spain and most may never have even met Leo? Yes you can...

Patience is a ...

Patience is a virtue or in our world, pain in the backside! I'm terrible when it comes to waiting for things and so when Leo's temperature went to normal (36.8), on it's own i.e. with no paracetamol on Saturday morning, we felt elated, over-joyed and somewhat baffled! It was short-lived though as by 3pm, it had hit 37.9 again, and stayed there or thereabouts until this morning. Again, it was relatively okay this morning before again creeping back up to the right side of 38 degrees.

Now we have to be patient again and see what the next day and night has in store. Leo will have zero immune system at some point very soon and certainly in the next couple of days, which means that the normal rules apply. If the temp hits 38 degrees twice in the space of 30 minutes, or spikes at or over 38.5 degrees, it'll be another few days in hospital and more IV antibiotics. Urgh! Need to have more patience...

Also somewhat impatient at the fact Leo has an MRI booked for 15 days' time and another kidney function test. Having said that, and not sure if I'm repeating myself (again), but it's not this forthcoming MRI which matters. The docs won't compare this one to the last two. They'll wait another 3 months (February) before doing another MRI. They then compare those two for differences i.e. are there any changes / growth in the 'scar tissue' / white stuff that shouldn't be there on a 'normal' / non-cancer scan? I guess it will be simple to see as the cancer has only ever been in one side of his brain and head, and so it's simple, even for us, to see the differences between one side of the scan and the other.

Patience...wish we had more of it!