(by Rin)

We’ve been travelling up to the Children’s Hospital in Brisbane a lot lately.  Four trips in three weeks to be precise.  Back in October, when we first started going to Brisbane for chemo it felt like a bit of an adventure.  It was rather exciting to be going up to the big city for the day.  Now it has lost a lot of its enticement and it just feels long to drive the two hours to RCH.

Being in the Oncology outpatients clinic is an experience.  The staff are absolutely incredible and constantly maintain a positive attitude.  However, it doesn’t mask the reality that the room is full of children with cancer.  The first time I was in the outpatients, back in September, I was completely overwhelmed.  Everywhere I looked all I could see were sick kids: children connected up to IVs, children with feeding tubes, children with limbs missing, children in varying states of baldness….and all I could think was that all these children have cancer. At the time, when Sam’s diagnosis was so new, I couldn’t put him in the same category as the other children.  Surely he didn’t belong with the cancer patients!  Then one of the children rang the bell hanging on the wall of the clinic.  His dad took a photo and everyone clapped.  I blinked back the tears as I realised that this little boy had completely finished his treatment.  Here we were, right at the beginning, with the future stretching out like a huge abyss, full of so much unknown, and I was witnessing someone who had made it to the other side.  It was almost too much to comprehend yet gave me hope at the same time.

Now we’re pros at the whole procedure.  The nurses greet Sam by name as he walks in and we come prepared for the day with the iPad, books, pencil case, and snacks.  Sometimes everything goes along without a hitch, and other times Sam is feeling more sensitive and afraid.  The last time we travelled up,  Sam didn’t want to go to Brisbane.  He didn’t want them to access his port.  He didn’t want to have chemo.  He wished he never had leukaemia.  We all had a little cry in the car together…and then the moment passed and he was okay again.  I am so thankful Sam is at an age where he can understand that he has to do uncomfortable things like take medication, get pricked with needles and have chemo.  He doesn’t like having them done, but has become very resilient.

Recently, to make going to Brisbane more fun, we decided to visit a lego shop while we were up there.  This wasn’t just an ordinary lego shop – in addition to selling lego, you could also book a time to build a lego set and look at their huge lego village display.  Sam loved it!  He could spend days in a place like that.  I don’t know if it made going to the hospital any better, but it was great that Sam got to experience something other than treatment.

Sometimes people are surprisingly awesome.

For instance: the lady I don’t really know from somewhere in the U.S. who sent us an email after reading this blog.  She was touched by Sam’s story and wished she could do something, but living on the other side of the world made it a wee bit difficult. So what did she do?

She gave blood, and committed to doing it regularly. In her words,

”

Unfortunately living so far away, it will never benefit him directly but you can know that because of your story, someone else will get the transfusion that they need.  And Sam can tell his friends that he helped heal someone from the US.”

How cool is that. I had a pretty good cry when I read that email.

More stuff like this on the news, and maybe people wouldn’t be so depressed.

Just a thought.

I haven’t posted for a while on this blog, we have been quite busy, and Sam has been doing quite well. However, there are still some things that I would like to share, so I might just break them into bite sized posts and see how far I get:)

We go in to Tweed Heads Hospital almost weekly to get Sam’s blood tested, and it is nice that we are getting to know the nursing staff there a bit. One day  after another blood test, we got a call from one of the nurses asking if we would like to go to “Dream Night”, a night at the zoo put on for kids who have serious medical conditions. We figured that would be great, so one evening in early December, after the zoo closed to the public, we gathered with a bunch of other sick children and families, and got to experience our first Dream Night.

Sam gets a personal magic show

Feeding the Lorikeets

Clowns, Pirates, and Kangaroos

The night was put on mostly by volunteers, from what I could tell, and they were all so happy to be there putting smiles on all the little faces. We got a free meal, a photo with a koala, there were animals being brought around that the kids could touch, lots of people dressed up in costumes, face painting, a magic show, free ice blocks…… What can I say, it was an amazing night. So, a big thanks to everyone at Currumbin WIldlife Sanctuary who volunteered their time and resources for that night!

Something I am realising is the importance of giving kids special experiences like this. They have to miss out on so many things that other kids get to do, I think it empowers them to know that they are valuable enough that people would do this just for them.

O.K, Just had a look at the date of my last post. Oct 15. Just after we got back to our house. The reason for lack of posting? I guess life was getting a lot closer to “normal”.  or at least a new normal that includes the 2.5 hour drive to Brisbane once a week, driving to Tweed hospital once a week for blood tests, and giving our son pills that are too harmful for us to touch so that when we cut them, we need to wear safety goggles, a gown, gloves and mask.

The other normal is that as much as the diagnosis of Leukaemia made us drop everything and run up to Brisbane for a month, strangely all the things we had to do before we left were still there when we got home, and now that a few days a week are taken up with hospital type activities, there hasn’t been a lot of time for blogging.  But hey, I am learning to do what I can, and then just be O.K. with not getting it all done. One day at a time.

However, I must actually wrap this up pretty quickly as I need to head up to the hospital in about half an hour to swap off with Lorinda, as Sam has been admitted again to the hospital in Tweed. This is the second time since we have been home that we have scooted off to the hospital for a few days. The first was because Sam had a fever, and this time he has a rash right around his port where he gets his chemo treatments. The first time we rushed off to Tweed, we kind of panicked a bit and didn’t bring much of what we would need for a hospital stay, but this time we were much smarter. So, as we were waiting in our own little room at emergency (isolated because of being an oncology patient), we cracked out the UNO cards we had brought, and all our snacks, and were having quite a nice time together. Friday night is our family games night, so we figured why let a trip to the hospital get in the way! We invited the doctor for a round, but he declined, mentioning something about having to work, but I think he was actually a bit worried that he would get schooled by a 6 year old.

Anyways, as we are beginning to learn, there seems to never be a “quick trip to the doctor to maybe get some cream for that rash” in the world of childhood cancer. It seems they always want to take some blood (which is not fun for Sam) and then they seem to like our company so much that they invite us to stay for a few nights. So, Sam will be in until the rash clears up, which could be up to 10 days. Not really looking forward to it, as it is quite exhausting being the parent who has to keep your child entertained in bed for days and days. But hey, I guess this is how we roll now.