SA

SA is for Staphylococcus aureus which has been confirmed as the bug causing the problems for Leo's Hickmann line so at least we now know what we're dealing with. Docs are not too concerned but concerned enough for Leo to stay in hospital in case the bug spreads quickly which it can do in cancer patients. Leo is currently still neutropenic (low white blood cell count and therefore unable to fight infection), and this weekend it should have started to recover in readiness for the next cycle of chemo.

I would say Leo's feeling semi-okay but not quite right; the bug could cause serious illness very quickly. He still has a runny nose and slight cough, which may sound like I am being a bit over-detailed and in a 'normal' 3 year old, the odd runny nose does not matter but in Leo, it could be the start of something serious.

The key thing now is that his white cell count improves in the next few days otherwise it could put the next set of IVA chemo back a bit and this is not what we want. It's crucial that for the chemo to be at its optimum, the protocol has to be delivered on time, as much as possible.

Leo's nurse today was Ken (who Leo insists on calling Freddy...because it makes Ken laugh) is just the nicest chap ever and he spent loads of time with us today explaining what can be done tomorrow if his white cell count is still below 1 (it was 0.22 today). So there are ways and means but we hope Leo's body will start to produce white cells on its own and in time for next Friday.

We saw Auntie Linda and my cousin Nicola today, and neither had seen Leo for a while. After a massive angry fit at lunch (that's Leo having the angry fit, not Linda or Nicola!!), he fell asleep in his buggy for 30 minutes or so which gave us all time to take a deep breath and chill...sort of. It's so amazing to know we have family around us at this time. PJ's aunt in Canada, the lovely Eve, emailed via the blog to say hello and touch base yesterday and we've also had an email today from Anne-Marie, another of my cousin's in Ireland. What would we have done before email and the net? I cannot even begin to imagine having to repeat everything which happens or doesn't happen every day over and over in phone calls to relatives and friends. I am pleased the blog has gone down well as it certainly helps to off-load at the end of the day.

More Hospital Food...but thank goodness it's Friday!

More hospital food (not that he's eating it) as Leo's chest has got worse today and he also has a bit of a cold and cough which obviously means he's not quite right. He is okay in himself and not poorly as such, just not quite right. So the idea now is to increase the antibiotics to four times a day and keep him in until the end of the course so perhaps Wednesday or Thursday...and let's hope his chest starts to get better, not worse. Hope the cold doesn't come to anything also as that could just make things a bit more difficult to deal with for him.

Leo also had his Vincristine today which is just a short 'push' through his wiggly worms (Hickmann line) and so that's the end of weekly chemo for now. As from next weekend, he only has chemo every three weeks, unless it's interrupted by him being unwell or lack of a bed at the hospital.

Thank goodness it's Friday because that means we have visitors tomorrow. My cousin Nicola and Auntie Linda are coming tomorrow and then my parents on Sunday, then my sister Denise and sister-in-law Julia and one and only niece, baby Sophie on Monday. It will be nice to have some family around again as we've not seen each other for what feels like ages!

SpiderLeo spotted...and Tiger Leo too!

SpiderLeo spotted at Clic House, Bristol and Tiger Woods had better watch out!
May 2008

Hospital-itis

If one could have something called Hospital-itis, then I think all three of us are getting there. Shame really, as we'll be seeing much more of the hospital in the next year and for years to come!

Leo is doing okay. Bored, but okay. Every now and then he holds his right arm in as though it hurts him to leave it or use it. His chest is slightly worse this evening but then I guess we need to give the new IV antibiotics a chance to work before we concern ourselves too much. The doctors and nurses are fab, and they always give us lots of time to ask questions, even if we're asking what may be irrational questions at times.

We met with the Clic Social worker today, Cylla, who is so lovely. We always end up on deep and meaningful conversations about geopolitical issues. I have also had a long chat with a really nice Mum of Seth, a one year old who is poorly right now. She has another baby on the way and her husband is looking after their other three children in between Clic House and the hospital. Luckily they are able to either go to the school at the hospital or the large playroom so they're having lots of fun. I am finally feeling on top of things with Leo that I feel I can listen and help other parents. Even just sitting and holding Seth whilst his mummy nips to the bathroom or get his dinner, all these little elements help all of us on the oncology ward.

A new family came in today and they just had that shell-shocked look on their faces, just as we probably did when this whole adventure started for us in May. You never want to pry or encroach on their space but you really want to give them a big hug and let them know that the doctors and nurses, and all the other people like to Clic play therapists are tremendously kind and able people. You cannot tell them everything will be okay because it's not. It's so not okay but you also want to let the know it's a bumpy ride from here on in but you can get through it.

Tomorrow is another day and I am really hoping his chest looks better, not worse again. Poor Leo. He is being so patient most of the time. We just wish things could be even a slightly bit more normal but they're not and we need to get on with life as it is now.

More Antibiotics and More Time Inside

You can probably guess from the title of this post that Leo is still in hospital and may well be for another 7 days or so. His chest is getting worse with the redness growing wider around his Hickmann line and further up his chest. The doctors are concerned the infection has taken hold inside the line or up the transit of the line which is dangerous as the line finishes near his heart and so we don't want the infection growing up the line and near his heart.

So we're monitoring and changing his IV antibiotics which we hope will help, but I do think Leo is going to go mad being in hospital for another 7 days. He's generally okay in himself, although his appetite has not improved and his moods change very easily because he's not quite feeling right but also not quite feeling unwell enough to be lying in bed all day. We can also tell his chest hurts as he still won't let either myself or PJ to lift him up under his arms. He always says "under my bum please," when we lift him up!

We have had some laughs today though, for example when Leo asked where daddy was, I answered he'd gone for a lie down because he was tired. Leo replied "Oh man!!!" in the most hilarious American accent. The nurse and I could not stop laughing. But then minutes later, his mood changed again when he realised PJ had actually gone out to buy some lunch. He's certainly very talented at kicking and his punching abilities have real strength and determination behind them. Sticker charts and rewarding his good behaviour is only doing so much at the moment and so the angry mood swings, whilst understandable, are very tricky to deal with.

It may be that we'll need to take advice from the child psychologist at the hospital, not necessarily to prevent the angry moments but what to do to try to help Leo deal with his feelings. He's three years of age so of course he's going to be unhappy at times, especially when he has to be at the hospital all day, every day and all night. But perhaps if we learn a few tricks on how to help him at this time, it may make him feel less anxious and therefore decrease the times he kicks out. It so goes against his nature to be like this and so it's even more heart-breaking to see him unhappy.

The ward Leo is on at the Bristol Children's Hospital is lovely and only one year old, plus there's a fabulous playground which Leo and other cancer patients can use in the afternoons. With the weather so pleasant right now here in the UK, he can run around outside to his heart's content but his energy levels are still quite high by the end of the day. He has also spent lots of time watching DVDs and the Top Three this week includes Monsters, Inc., The Simpson's Movie (where Leo joins in with 'Spider-pig, Spider-pig...) and also Cars.

So we'll see what tomorrow brings but I think it will be more of the same and let's hope the infection starts to go soon. We need Leo to be well enough to have chemo on Friday and then full IVA chemotherapy which means another hospital stay for 48 hours plus the following weekend. It's crucial his treatment is done on time in order to maximise the effects of the protocol so fingers crossed....and everything else as well.

Visitors from Far and Wide

Leo has been allowed out of the hospital today and then goes back at 5pm for IV drugs again and stays overnight at the hospital. Hopefully then the redness and infection will have gone down by tomorrow and he can come home for a few days. I think we need to get used to the fact that this middle week of the 3 week cycle will always be the tricky one.

We're very fortunate to be having lots of visitors very soon. My brother's wife is here in Bristol next week, along with their new baby girl, Sophie. We cannot wait to see them considering they live in Dubai and we've not met Sophie yet!! Then my cousin Nicola and auntie Linda are here at the weekend and we've not seen Nicola since this whole adventure (!) started so that will be really nice.

Plus we've had an email today from Spain this morning. Martina's mum, Leo's best friend at King's College has been in touch and her email was lovely and written in fluent English. Just as well as our Spanish is not great when it comes to the written language. Martina would like to come and see Leo and when I asked if Leo if he'd like Martina to visit, his face became a massive smile and he nodded his head furiously. We'll take that as a yes then! There's another visitor from Spain who is also one of Leo's best friends and that's Jack. But we're waiting on Jack's mum's passport to arrive as otherwise Jack will be able to come and Marie will have to stay home!

Leo is happily enjoying a quiet day today, having watched The Lion King earlier and now he's happy playing with Thomas the Tank Engine and friends. Much of his Thomas train set is still in Spain so he's having fun making the trains he does have run all over the bedroom, including under the bed. This causes much mirth as then I have to struggle to get them out with Leo's shrieks of laughter in the background. Whatever makes him happy!

Still in hospital

Leo is still having iv antibiotics for the infection in his chest where the Hickmann line is. He's been okay today. No temperature; just very bored and frustrated with things really. Thankfully milk has been on the menu today, and lots of rice crispies so at least his appetite is coming back.

My feeling is he'll be home to Clic House tomorrow (Tuesday - as I am writing this at just after midnight on Monday night / Tuesday morning), and then the doctors will give us oral antibiotics for him again. Judging by the severe lack of success last time around, we need to learn some new tactics for ensuring he takes his medicine without reverting to him having a nasogastric tube up his nose into his stomach. However, in my mind, I know he'll need one at some point as the antibiotics are horrid..not that I tell him that, of course! We'll see what happens.

Had some lovely cards and emails again today and pleased you're enjoying the updates here. It does help writing as sometimes it clears the mind a little before attempting to sleep.

Anyway, hopefully he will be home tomorrow and then back to the day beds ward for Vincristine on Friday. We should know tomorrow whether the antibiotics via iv are working and if not, then they'll probably make a decision tomorrow as to whether to operate again and put in another.

Another day, another hospital stay

This was the weekend in Leo's chemo cycle where he is most susceptible to infection - day 8 onwards on any cycle until about day 15/16, his white cell count in his blood drops as a result of the IVA chemo protocol and so we've pretty much had him quarantined all weekend - no visitors and no shopping or trips to interesting places like the zoo, despite the beautiful summer weather!

But that doesn't stop his Hickmann line becoming infected and needing another visit to Bristol Children's Hospital and their A&E department. I gave the kid's oncology ward a call for advice about his chest looking sore around the line site and that he'd stopped letting me pick him from under his arms. Leo's not had a temperature, which we have checked every half-hour even throughout Saturday night, but as Sunday went on, he became more and more tired, has rarely eaten or drunk any milk or water this weekend and his site was becoming more sore.

I said to Leo we perhaps should go to the hospital to which he replied, "yes, I think we should Mummy!" He's three..and whilst he may not be able to completely verbalise his feelings, he is certainly learning very quickly and perhaps having to mature before his time.

The hospital have been amazing yet again. As soon as we arrived in A&E, it was standing room only but because Leo could very easily pick up a bug, we kept him away from the children and their parents, as well as all the toys which he likes to play with! The receptionist knew who he was as soon as we gave her his name and immediately (but without anxiety) took us to a room in the main treatment part of the A&E department. This is because he could so easily pick up any bug which if you have a room full of poorly children waiting to see the A&E docs, he could easily do. We met some lovely nurses who checked Leo's pulse, temp, blood pressure and blood oxygen levels, and Leo was lovely with them, even when they took blood.

And then within 10 minutes, the oncology registrar came to see him and Leo was not so nice to him! Leo seems to be much more charming with the ladies!!! But then considering four weeks ago he was kicking and spitting at anyone who came near him, his behaviour and anxiety about being in hospital and being prodded has decreased significantly.

Next came a trip up to Ward 34 which is the oncology ward. Very quickly the nurses there had him settled and giving him IV antibiotics over 2 hours and we hope the redness and pus around the line site will go down overnight otherwise the doctors will take it out. This would then mean Leo needing another short operation under general anaesthetic to put in another which will be a shame as the lines can last up to and over a year.

It's the second time in three weeks Leo's been taken into hospital for a line infection. Last time he needed a blood transfusion also but I think he's actually more well this time, give his lack of high temp so fingers crossed.

The easy parts are the days you can plan for such as the IVA weekends every 3 weeks and then Vinc injection every Friday, with blood tests every few weeks etc. But it's days like today when as a parent you feel completely out of control. PJ and I have been trying to get our heads around whether he should go out and find a job in order for us to not only bring in some cash but also to try and gain a sense of normality. But then events like this happen which throw us for six and then we can only think that Leo needs us, both of us and we need each other right now. There will come a point where he or I will go and ensure we do what needs to be done, but until then, we're going to try to stay together and care for Leo together for as long as we can.

Let's see what tomorrow brings...