Brave Boy/s

The sixth cycle of chemo started today so we're two thirds of the way there with this protocol. Just three more cycles left once Leo finishes on Monday. Some days it feels like this whole thing has been going on for just a few weeks and then sometimes it feels like we never had anything before all this.

Leo has been quite sick again today as soon as the chemo went up but has managed some milk and spagetti bolognese which is good. He is starting to look so tired and has sore red skin around his eyes due to the radiotherapy. And yet, we still did some painting, reading and playing together today. Brave boy. Children are awesome despite being faced with such horrid things such as chemo and radiotherapy.

We also spent time today with another family with whom we've met before. Ryan is a year younger than Leo and also quite sick, and poor thing, he's been in hospital for over 5 weeks. His mum and dad were struggling as to whether to shave his hair as it's now started to fall out alot. Like PJ and I, they found it quite hard to see his hair all over the place, and his mum had to change the sheets in the middle of the night last night because the hair had gotten everywhere. I do think it's hard for parents when this happens, even though we all know this is going to happen. It's inevitable and yet, so shocking and in some way, we feel like once our children start to lose their hair, they won't be our boys anymore.

So Ryan's mum and Ryan himself, were very brave and decided to shave his head whilst watching Alvin and the Chipmunks with Leo. I could tell Ryan's mum and dad were finding it hard and I felt for them completely. Bless Ryan..he then wanted to do his Daddy's hair and Leo was saying that Ryan was like him, with no hair!! "No hair brothers!"

Well done guys and hope it's easier now his hair is much shorter. He's still Ryan, just as Leo is still the same but with no hair! So just more like their Daddys now, I guess!!!

One Third Down, Just Two Thirds Left...Woo Hoo

Yes, cup half-full stuff but you have to think positively (most of the time) otherwise you'd go crazy. Leo has completed ten days of radiotherapy and has now only twenty sessions left. And you know what? He is doing great. He actually cheers when we approach the hospital and loves the staff in the playroom now, who are finally seeing the nice, loving, out-going, cheery boy that Leo can be once he gets used to people. He's done some lovely artwork whilst at the hospital this week and really enjoyed himself, which was fabulous for PJ and I to see.

Chemo weekend is upon us again...or upon Leo, should I say. This is the sixth cycle within a nine cycle protocol and we've impressed upon the docs how much he needs as much anti-sickness drugs as possible for the duration of the weekend. Unfortunately these drugs were not prescribed to the max last time around and so Leo suffered quite a bit, but having said that, he's likely to be very sick anyway because of the actual drugs; but it's nice to know as parents, that we're doing as much as we can to help Leo feel as okay as possible throughout the weekend.

The Drugs Do Work!

And so the drugs finally worked properly today. The general anaesthetic and the sedative went well and Leo did what the doctors expect with children and slept the drugs off nicely afterwards. None of the biting, kicking, screaming and acting like a drunken old fool once he's coming out of the anaesthetic..and to say it was a relief for all involved is an understatement. Having said that, Leo's nurse today said not to expect it to happen like this again tomorrow..great!!?

Only slight concern this week is that there's no room at the Marsden for Leo to have his chemo this weekend and we're keen for him to have optimal treatment, which means on time treatment. The other aspect is he's significantly neutropenic and has been for one week, and very often this can cause a delay in chemo. So Leo may need GCSF again, which is the stimulant he has previously had to jumpstart his natural bone-marrow to develop new red blood cells. We've been in touch with Bristol Children's Hospital and they have space for him for Friday and Saturday nights, if we need to take him back there for chemo. Fantastic that even though we're here in Surrey, Bristol can still take care of him.

So apart from all the clinical stuff, Leo is doing great, if you take into consideration all the medication he's having on a daily basis. He plays well at the hospital before PJ and I take him down to the radiotherapy suite, and then today was very cute and very happy to see his Auntie Denise when he finally woke up after a nice long sedative and anaesthetic induced sleep.

Back here at my cousin's, he's had us all bouncing on the trampoline again (in-between rain showers), and been pretending to run around as though he has a new scooter (which we've said he'll get once we're back from this hospital to Bristol..so who knows..this could be this weekend if there's no room at the Marsden!!)

He's sleeping nearly 12 hours per night which is great and goes to bed very well indeed. He's certainly ready for bed when he heads up at 9.30pm, and then because he's waking up late morning at about 9am, it's easy to keep his mind of food and drink. He's not allowed any milk or food past 6am and only clear fluids i.e. water until 10am, and so thank goodness he's sleeping in each day. I cannot imagine how parents cope if their children are early risers and you have to keep them off food and water until after 2 or 3pm each day!

Hope the video works below. It shows some gorgeous footage of father and son playing about on the trampoline, taken by my Dad last Saturday. Leo and PJ are having a ball!!

Pre-Week 2 Radiotherapy...Show Me What You've Got!

So last week could have been worse, although could not have got any worse from the very long first day last Monday. Having said that, we did have a scare on Friday but the doctors and anaesthetists were on top of things to prevent serious issues arising. Whilst Leo was under the general anaesthetic on Friday afternoon, his Sats dropped severely and very suddenly (oxygen levels in blood) and when the anaesthetist put his hands on Leo's chest, he could feel crackles on both sides. He could only hear breath sounds on the right sides which indicated a mucus plug in the left lung.

The docs moved Leo slightly and increased the oxygen through his mask and the mucus plug must have loosened itself whilst they did this (which is all standard treatment for this type of problem). Luckily, they were able to give him the radiotherapy treatment this time around and when he'd finally come to, we took him for a chest x-ray to see what was up. The x-ray did not show anything un-toward although the doctors said two things; firstly, x-rays tend to lag behind any symptoms such as a cough (which Leo does now have) and also they do not have any x-rays to benchmark against so they're kind of playing this one blind, as it were.

We still have to take Leo to the hospital tomorrow but this weekend, he's had a slight runny nose, a few sneezes and a bit of a cough so I feel they may be cautious and decide against the radiotherapy treatment tomorrow, and maybe even for a couple of days. So fingers crossed for this week and also, that he is well enough for the next cycle of chemotherapy at the weekend. If they decide to postpone treatment, it just gets tagged on to the end which means he'll get the full thirty sessions of treatment but that it will prolong our stay in Surrey.

Despite all this drama on Friday, Leo has still had plenty of energy and is certainly giving PJ and I a run for our money! 'Show me what you've got!', Leo has been shouting at us this weekend, to urge us to bounce as high as possible on the trampoline outside the back. So we've had lots of smiles and laughs even though Friday was quite scary.

Thank goodness Leo is only 3 and a half. He is taking everything in his stride and able to enjoy the weekend in-between treatments like that of any other child his age who isn't battling with cancer. He is such a positive boy and a privilege to be with, and helps PJ and I relax when really, all we want to do is wrap him up in cotton wool and protect him as much as possible.

An interesting observation today with 'Doctor Leo' giving Winnie the Pooh medicine through a 'tube' in Pooh Bear's nose. He kept asking me to hold Pooh Bear's hand because he was a little scared but Leo also kept reassuring the Bear that 'this does not hurt'. PJ and I took the opportunity to talk to Leo calmly about the tube in the teddy bear's nose and he said it was for medicines. We also said it was for food if his mouth becomes too sore or if he doesn't want to eat.

Leo must have been listening each time we've discussed this with the team at the Marsden and the Bristol Children's Hospital, and he's seen plenty of children with a naso-gastric tube so we hope this is a sign that once he does have one, as it's unlikely he'll get through this without, he'll tolerate it and understand what it's all about. Such a mature head on such young shoulders, but then we've always thought that about Leo (yes, very slightly biased, I know!!)