Dream Night

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.

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.

The Oncology Outpatients

At the moment, our regular routine includes a trip to Tweed Hospital to get a blood test and another trip up to Brisbane for chemo.  My parents joined us on our last trip up and my dad wrote a great blog post describing the experience.  You can find it here.  It’s a great description of what our chemo days generally look like.

 

“normal” life

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.

“what did your friends think of your new haircut?”

Two of my friends thought I  looked kinda scary, one thought I looked like a space alien, and the rest liked it.

 

Sam’s New Do

Well, we knew it would probably happen, but that didn’t make it any easier seeing those first few hairs drifting down from Sam’s head in the sunlight. A bit of a jarring reminder that, even though we are back home, we are not yet home free. I think I personally found it one of the hardest steps in this journey. Until now, Sam didn’t look like a cancer patient, and so it was easy to forget about from time to time. Now it is feeling quite real real.

Last night we got out the clippers, and cut Sam’s hair nice and short. We all had lots of fun as we checked out each new look as the hair was cut away. Sam was very happy with his new look, and excited to show the other kids at school. He is such a positive little guy!

Remission Party!

We are back home!!!

Yesterday at 12:30, we were informed that Sam is officially in remission. Which, I think means that he has less than 0.1% leukaemic cells in his blood. And which also meant we got to go home. Which is awesome. So awesome, in fact that we decided to throw a party. So we invited everyone who was in our house at the time, made a classic Mennonite meal that Sam loves, and then got out on the dance floor and danced the night away. Or at least we danced until bedtime. Which is 7:30 for some of us.

Though we know there is still a long road ahead, we wanted to celebrate what we have been through, and let our hearts be filled with thankfulness for the grace we have been given so far. I guess it is fitting that this weekend is Thanksgiving weekend in our homeland. We have much to be thankful for.

Waiting

There certainly is a lot of waiting in this journey. Waiting to see doctors, waiting for blood results, waiting to get your prescription filled, waiting for the nurse to come and stop the beeping on the I.V. Waiting for the blood from the blood bank, and the list goes on….

Right now we are waiting for the bone marrow results – the official word that Sam is in remission.  Or isn’t.  We’re waiting for the thumbs up to go home.

It’s hard to make plans when you’re waiting and it’s one more lesson in taking each day as it comes and enjoying the moment.

Sleepless Nights

Down the street from where we’re staying is an old gaol.  Sam has been curious about it since we arrived and now that Grandma and Grandpa have arrived we  went for the long-awaited tour.  It was really interesting, but although advertised as “child-friendly” it turned out to be rather graphic in parts.  So that, combined with one of the side effects of dexamethasone, led to some trouble sleeping last night.  After listening to music, reading a book, drinking milk and more music he was eventually asleep around midnight.  And then awake for a toilet run.  And then awake again by 5:30.  Fortunately Sam has discovered the world of reading and will happily sit in bed reading his Zac Power book until 6am before getting up for his first breakfast.

I think we’ll be pushing for the afternoon nap today.

gaol