Here’s a little video I made showing some bits and pieces of Sam’s time at the hospital.
Here’s a little video I made showing some bits and pieces of Sam’s time at the hospital.
Sam:”Sometimes Mommy is scared sometimes, like when she is talking to the doctors, and I, like don’t know what they are talking about, but Mom fully gets it, and then she just bursts into tears.”
Lorinda: “I was scared when the doctors said you had Leukaemia because I didn’t want you to be sick. What were you thinking then?”
Sam:”I was thinking I’m gonna be O.K., and it’s alright.”
So, we now belong to a new club! I guess you could call it “the families with kids with cancer club”, or something like that. Though at this point, it feels a bit like we still have the temporary, paper copy of our membership card while we wait for the shiny plastic one to come in the mail. It feels a bit like that, just because Sam doesn’t look like a cancer kid yet.
We found out yesterday that the Childhood Cancer Support (CCS) group was going to watch the jets do a practice flyby over the river in preparation for the Brisbane Festival grand finale, and they invited us to come along. We were expecting to meet up with them there, and figured we’d sit on the grass and watch the planes. With Sam being continually hungry, we made sure we packed a lunch for us in our big red shopping bag.
We soon realised that this was going to be a little more than a family picnic, as we were ushered into one of the pavillion things that, the next night, would be full of VIP’s. Well, today we were the VIP’s! They had Pizza and drinks, we watched the planes fly up and down the river, and then to finish it off, all the kids got bags of stuff from a bunch of different sponsors. Hats, drink bottles, M&M’s, paper, toys, comic books, airplane paper clips, and the list goes on.
After it was all done, and the CCS van left to go home, we did go find a bit of grass, pulled out our sandwiches(Sam was hungry again) and had a little picnic on the grass. It was a really good day.
On Sunday I was watching people coming into the carpark by us and they all seemed to be walking in the same direction. “Maybe there is a church near us,” Rin said, so I put on my shoes and started following someone to see where I would end up. Turned out there was a neat little market right around the corner from us here, so we decided to all go have a look.
Now, I am not sure if I have mentioned this yet, but due to the steroid Sam is taking, his appetite has probably doubled, and his tastes have changed. So, while we were at the markets, Rin offered him some really yummy strawberry ice-cream, but Sam replied that he would rather have the haloumi and sun dried tomato bread that he had spotted as we walked in to the market. Is this the same boy who has ALWAYS responded “ice-cream” when asked what his favourite food is? Now, when asked the same question, the answer is “curry”.
It was good to go to the market, but it was very apparent the lack of energy in Sam. Pretty much, all he could do, was walk the block to the market, look around for about 5 minutes, and then sit down and eat yummy bread. I could see how it would actually be handy to have a pram or something up here, though Sam was not impressed with that idea.
Going out is a bit of a weird thing now, knowing that Sam’s immunity is low, I am constantly aware of who is standing near us, what Sam is touching with his hands, making sure those hands don’t go near his mouth, and consistently using hand sanitizer to kill any nasties.
Yesterday we went to the museum as a treat after going in for treatment Tuesday. We went first thing in the morning so as to avoid the crowds. Wrong! I guess that was everyone’s idea, so we had a rather quick museum experience, trying to steer clear of large clumps of kids, and yet still see all the things Sam wanted to. There is an outdoor dinosaur display, so that was a good spot to hang out for a bit. After the museum, we went down to the river, and had a little snack. Sam was tired by then, so we came home and he spent the rest of the afternoon reading and writing in his journal.
Yesterday we went in to the hospital for Sam’s chemo treatment. He was pretty worried about the nurses accessing his port, more about them pulling the needle out rather than it going in. Anyways, to make the day a more positive experience for him, we decided that after getting the chemo, we would go to the museum for a bit and look at the dinosaurs.
Anyways, when they did his bloods yesterday, it turned out that his red blood cells were low, and needed a transfusion, which, sadly meant the museum dinosaurs would miss out on Sam for another day. I guess getting the right blood for a transfusion isn’t as easy as going into the cupboard, pulling out a bag of O negative blood and hooking it up. There are some specific things they need to look at to match it to Sam, and then order it from the blood bank. Then it gets hooked up to the I.V. and takes a couple of hours to go into Sam, just so that it isn’t a shock to his body. It was amazing to watch though, probably after about an hour we could see the colour coming into Sams face, and his lips started to get nice and pink again. So good!
I was talking to the nurse about blood products and the blood bank, and she was saying how sometimes it can get tricky getting blood at certain times, how they are sometimes almost literally waiting for it to get donated so they can give it. I am so thankful for the person I will never meet, who took the time to go in and donate the blood Sam got yesterday, and everyone who has donated. Lorinda and I decided it is something we are going to start doing again, it is a way to give such an amazing gift, and it doesn’t even cost you anything. Yay blood!! Give it away!
Oh yes, Sam just reminded me as I read this post to him, that it ended up not hurting when they pulled the needle out, so it turned out not to be the worst day of the week after all.
Thanks to the awesomeness of the Leukaemia Foundation, We are now living at the ESA Village, an apartment complex run by the foundation for the purpose of providing emergency accommodation for people forced to live away from their homes while they undergo treatment. What an amazing blessing! The whole complex is only a year old so everything is nice and new. We have a two bedroom unit with all the amenities, even free internet! Woohoo! There’s a games room, a gym, and a little playground as well in the complex. You can tell they have tried really hard to make life as good as it can be in the situation.
The unit even comes with trains right outside. While this is a downside to most normal people, when you are 6, living beside a train track is like winning the lottery. Sam sat out on the balcony for the first two hours just watching the trains. And there are a lot of trains to watch. We have passenger and coal trains here for our listening and viewing pleasure! TO be honest, it doesn’t bother us really, after 10 years of living on the pacific highway, we are used to it.
So, though it is still not home, at least we have some space that’s our own, and lots of supportive people that work here. Thanks, Leukaemia Foundation! You rock.
This used to be a brilliant little video of Sam talking about what life might be like with no hair. Unfortunately, Sam is not keen on the video and would prefer it not to be public. In the interest of having Sam feel safe talking with us, and in control of the information about his situation, I have pulled the video from this blog.
The last thing we would like as parents, in a time when Sam feels like he has lost all control, is to take a little bit more away from him.
After many days of trying to find the right amount of laxative to balance the effects of his medications.
That is the best poo I’ve had in a long time. It is the exact right colour and the exact right shape.- Sam
Coming in to the hospital, completely unprepared, exhausted emotionally and physically, and faced with a barrage of information, away from our home and usual resources such as internet, we felt very powerless in our situation. Even trying to figure out where to stay seemed like a mammoth task. Luckily, there are organisations which have seen these needs and, thanks to generous supporters, are able to offer services which help remove those burdens. Our biggest relief was when we heard word from the Leukaemia Foundation that they would take care of our accommodation while we were up in Brisbane! How amazing! They sorted everything out for us, which let us focus on the needs of Sam and the family. Red Kite is another organisation that provided us with a big bag of things as we arrived at the hospital, including a teddy bear for Sam, a handmade quilt and pillow case, travel mugs, a diary, and many other useful items. Things like that take on so much more meaning when you are feeling fragile and scared, and it really made me feel like there were people who knew what we were going through and cared.
So, to everyone who has ever dropped a coin in a wishing well, bought a sausage at a fundraiser or donated to any of these charities, thank you, because it made a difference to our little family.
On Friday Sam got another dose of Chemo, after which Sam was to be allowed to leave the hospital, and stay in our accommodation nearby, and be treated as an outpatient. While Sam was getting the chemo, one of his good mates came to visit, which was awesome! The only thing was that Sam had to stay in his bed for 3 hours just in case he had a reaction with the chemo. Not that fun when you want to go play with your friend. However, at least Sam was able to share the joy of hospital bed riding with someone who could appreciate it.
It was so nice to have dinner together as a family outside of the hospital. It had only been 6 days but it felt like it had been a month. We now needed to stay in Brisbane for at least another 3 weeks, while Sam was given his treatment as an outpatient.