History

Friday, March 27, 2009

Josephs favourite was the waterslides and the mini golf, Amelia liked Capricorn Caves and the platypus, Ben was a fan of Airlie Beach. But for Chris and I it was a week of wonderful escape, full of family time that was just so precious.

We decided to just hit the road and explore which was great. The first night we ended up just north of Rockhamptom where we checked out the Capricorn Caves that we have previously just sped past. It was very cool to see what was hidden beneath the surface. We stayed there overnight and in the morning as Chris and I were having coffee on the deck we were delighted to be able to watch the local wallabies wandering about.

After that we went to Airlie Beach. It’s a big holiday spot as it’s the gateway to the Whitsundays, and lots of backpackers, so you do feel fairly ancient. After a couple days there we moved on to Townsville. We had lived there just before we went to Canada so it was a chance to catch up with friends. The most wonderful and amazing thing was getting a video that a friend had filming of my kids over the years that we had lived there. As we didn’t have a video camera Jacqui would film them for me, but when we left, we left the video behind and when we lost track of Jacqui I figured it was gone. Then out of the blue (through this web site) we got back in touch and were able to get together.

“Jacqui, I cannot possibly thank you enough. That video is so wonderful, thank you for filming it and then taking care of it for us. It means so much.”

On the way home we stopped at Eungella . There we were thrilled to find some platypus and learned lots on a torch light walk, Amelia did fantastic as she was the first to spot a possum.

Then we headed home. Weary but aware we’d had a wonderful trip.

Weds April 1, 2009

Happy 12th Birthday to Ben. It seems like a lifetime since he was a little 6 year old, and was diagnosed with leukemia. At that point we couldn’t imagine him as a happy, healthy 12 year old. But here he is, Well done Ben. Enjoy!

Friday, March 13, 2009

Wow I realise as I’m writing this that it has been a month since I have updated. And I have been home for that entire month. How great is that!
My obstruction has stayed clear and I am able to eat… and everything tastes sooooo good!

So now are concentrating on having some wonderful quality time.

Last Friday we had a lovely day at Sea World and then spent the weekend in Brisbane. Now after a stressful week of cyclone watching we are pulling the kids out of school again as we head up to Townsville. The destination doesn’t really matter though; it’s more getting time together while we can. Hitting the road and exploring together. My energy should be a bit better as I had three units transfused during the week. My legs are still quite weak and we have borrowed a wheelchair so the kids now fight over who gets to push me around!

So I’d better go pack, thanks for checking up on us. We’ll be back in a week.
Andrea

Thurs Feb 12, 2009

Firstly…. I’m still here.
No prizes for guessing the scan showed a complete block.
So back into the hospital for me to wait for it to pass
The first 10 days in were long, unlike the previous blocks this one did not pass. Slowly I was starving to death which is fairly ironic for someone who has battled her weight all her life. So it came down to do nothing and starve, or try surgery. Very risky as they didn’t know what they would find when they opened me up, probably would end up with a bag (not that that was a big issue at this stage), or may not be able to do anything, But the best outcome would be more time and that as they say is priceless.
So Jan 30th I had the operation. My wonderful doctor reported that it was the best result he could have hoped for as the blockage was right where his incision was. It was caused by new cancer growth that he wasn’t able to remove but could bypass and staple me back together.
A week later I was discharged, and now 2 weeks later I’m able to eat again, and slowly getting some strength back. My parents are here and doing a great job of taking care of me while Chris is at work and the kids are at school.
So I got the best thing of all, more time. And having come so close to losing it already I can’t say just how grateful I am for that.
I have no idea how long this phase will last, but it is good.
Every interaction is so precious,

Andrea

January 16, 2009 12:50am

I must admit when I made the last journal entry that I had planed on sitting here at the computer every couple of days and chatting about whatever happened to be going through my mind. But as usual my body has other plans and for the last few days getting out of bed at all without pain has been quite a chore, let alone thinking of anything coherent to say once out.

With the increase in pain we headed down to the doctor, where we decided on having a scan to see if area of blockages can be found and bypassed. Risks were discussed, they could open my stomach and find such a mess nothing can be done. Or I may not survive the operation. And then there were other options: I could do nothing, have more pain killers and wait for the impending obstruction.

I don’t think I’m afraid of death, I figure billions have done it before me and billions will do it after me, I will most likely be in a bed which puts me at a comfort advantage to many. I really want to maximise the time I have left. Quality time is so precious now. To quote Coldplay the hardest part was letting go, not taking part. The scan is tomorrow, hopefully it gives us some clear direction on the state of things, time will tell.

I’ll update soon, but as it’s nearly 1am I’d best try to get some sleep
Andrea

January 8, 2009

HAPPY NEW YEAR!!!

My goal was to have a great Christmas, and I am delighted to report we achieved it.
Now we’ll work on the New Year!

I’m feeling fairly melodramatic; I’m not sure how you are supposed to approach this phase of life. There is no more chemo available to me, treatment is symptomatic, with the chance of radical surgery if needed. The government has given me my superannuation, and I’m under the care of palliative care. I’m not about giving up, but being organized for all possibilities is now a top priority. So I’ll probably waffle on here every now and again. Some days I feel how unfair it is, other times I think that car accidents are worse, but mostly I am overwhelmed at the prospect of not having a future with my beautiful family.

I’ve been in hospital for the last week, as always with the fear of not getting out. So today, as my first day home, has been a fabulous day for which I am grateful.

So Happy New Year to all who read this
May you find beauty in every day

Andrea

Saturday, November 29, 2008

I’ve been waiting for a lull, a time to catch my breath and then I’d get this page up to date, but as that hasn’t been forthcoming I’d better just do the best I can.
The delay wasn’t entirely my fault; the computer was in the shop for repairs for a while, but enough excuses!

I managed to complete 4 cycles of chemo. I was supposed to do 5 but #4 had me ending up in hospital with another bowel obstruction and lots of “end of life” talk. That was amazingly scary and a major eye opener for both Chris and I. A week later the emergency had passed and I was discharged on a low residue liquid diet… not overly appealing but compared to the alternative I won’t complain.
Apparently it can happen again at any time, and it did about 4 weeks later despite my very restrictive (and very boring) diet. This time it was not as severe as by now we know the signs and went in earlier.
Monday is my next oncology appointment so we’ll work out the next plan.

So that’s me in a nut shell, not too great but gearing up for a fantastic Christmas.

The kids are doing as well as we can hope. They went to their first Camp Quality Camp in the last holidays which was fantastic for them. They are heading into the last 2 weeks of the school year, which seems to be fairly lax with lots of Christmas activities. Tomorrow we’re heading to the Camp Quality Christmas party at the beach which should be fun.

Chris as always is my rock. I am so grateful everyday for the support he gives me. I cannot imagine going through this without his constant love.

As always I will end this with a promise to update more often,
Andrea

Life is not measured by the number of breaths we
take, but by the moments that take our breath away.

Tuesday, September 9, 2008

This seems to be one of ‘those’ weeks. First the computer is acting very strange, and then my mobile phone stopped altogether. Then Millicent (the Labrador) got sick and Amelia got 4 out of 30 on her Maths test.
And then I went on chemo.

I guess things don’t always come in threes!

After my 2 week delay with low counts this dose has been reduced by 20%, that along with a different drug for nausea, and I’m hoping things will go smoother this time.

I’m heading back to bed now, I’ll update soon (if the computer lets me)

Andrea

Tuesday, August 26, 2008

The past few months have been filled with many good times: Trips to the beach and the park, Visits with friends, old and new, an amazing fancy dress 41st birthday party, And lots of time just hanging out as a family. I also went to my first Ball, I really enjoyed getting dressed up like a princess, even if Amelia said we were less like Cinderella and Prince Charming, and more like Shrek and Fiona!

But all good things must come to an end and now it’s time for chemo again. The latest scan showed more spread with new tumours in my spleen and pelvis. Round number 1 was Aug 11. I was psyched and ready… and got knocked for a six.
All of a sudden I felt as if maybe I really was quite sick. It was a very sobering thought, or even a slap in face reality check.
Some fantastic friends helped Chris out, and our household still functioned fairly smoothly, but I sure didn’t.
A week later I was getting back on track, and now 2 weeks later I’m feeling great. Of course I should be having round #2 this week, but my neutrophils and haemoglobin are low so I will have to wait till next week. Unfortunately I don’t even get to avoid the hospital as I’ll have to be there all day tomorrow for a blood transfusion.

Again I find myself torn, I want to give the chemo the best chance to work but I’m really enjoying feeling well.

I’m down for 2 more cycles and then another scan.
It will tell the story.

Andrea

Tuesday, July 8, 2008

I’ve been called a few different things, mostly positive, but this week I was called “lucky”. Admittedly it was by someone who doesn’t know me very well. As I was in hospital at the time (in the middle of a weeks stay for a bowel obstruction) I wasn’t feeling overly lucky. But after a sarcastic snort I have spent time thinking about the 4 major things that indeed make me truly lucky.

1. Chris. My soul mate who gives me strength when I run out, Laughter when I need a smile, and love always. This month brings our 13th wedding anniversary and I can honestly say I love him more than ever. We promised to grow old together. Always and absolutely.
2. Ben. My oldest. At 11 he has already been through so much. His carefree childhood disappeared when he was 6 to be replaced with 3 years of chemo. But you did it, and now you’re healthy. He’s mad about pokemon, not so keen on school work, and has a wonderful caring nature.
3. Joseph. I look at him with pride, knowing that every step he’s made has been a struggle. Autism makes life a constant challenge, but it couldn’t stop his loving nature from shining through.
4. Amelia. My baby always. At 7 she is in such a hurry to grow up. She’s smart, vibrant and beautiful. A chatterbox who lights up our lives.

Yes I am lucky.

But in other ways I’m not so lucky.

I just had my appointment with the specialist oncologist didn’t go so well. It was nothing that we hadn’t heard before, but coming from an expert on colorectal cancer, it was particularly hard to hear.
Luckily my cancer is slow growing, or I wouldn’t be here today.
The bowel obstruction could have been a one off, or it could be the first of many. If that is the case I won’t be able to have chemo.
Chemo once started will continue until its not working, or my body doesn’t tolerate it anymore. It will not cure.
The trick is still deciding when to start the chemo, wanting to maximize my ‘well’ time. At the moment it’s been delayed at least 4 more weeks until my next appointment.

So until then its back to living. This week is school holidays, the rain seems to have cleared and we’re back on our adventures. Today it’s the botanical gardens with the train rides, tomorrow we may check out the rock pools at the beach.

It’s all about the ride.
Andrea

By the way I have a new motto,

Strength does not come from physical capacity.
It comes from an indomitable will.
Gandhi

Monday, May 19, 2008

Here I am again apologising for not keeping this web page up to date. Sorry. It’s quite a tricky thing really knowing what to say, mostly it would be upbeat but occasionally it would be quite a morose self pitying account.
I’ll try to save everyone from that.

I’ll start with my oncology appointment. Nothing too exciting. The timing of starting chemo seems to be up to me.
So I have put it off.

Since I last updated I have enjoyed a visit from my parents. As I haven’t seen them in a few years (and a fair bit has happened in that time) it was very good to see them again. There was a week of school holiday while they were here so we were able to hit local beaches and parks with the kids.
The weeks since they left have been a bit of a blur, I can’t say that I’ve achieved much but the time has sure flown. Chris is away a lot with work, and the kids are busy at school. I’m mostly feeling good.
The next few weeks will be busy.
Tomorrow some friends of mine are coming from Canada for a visit. This weekend we are having a party to celebrate my 41st birthday. It’s fancy dress. (My 40th was a mid-chemo non event so this year we are going all out) Then next week we’re pulling the kids out of school for a week at the Gold Coast. We’re renting a beachfront house! I’m am so excited; it’s going to be great.

Tomorrow I’m also getting my next scan.
Reality.
I will not let it interrupt my good time!

Andrea

Friday, March 21, 2008

I remember as a kid rushing to a new park to check out the slide. Generally you sped down them, but every now and again you came across one that just didn’t work. At half way down you could just as easily go back up. At the time it was horribly disappointing. But at the moment I can see the attraction in them.

My life at the moment is very slide-like. But it seems to be the speedy ride, but that doesn’t stop me clawing at the sides to try to slow things down.

I just got my latest scan back. In the last 8 weeks there has been small growth in the lesions in my lungs; the questionable area in my liver has grown (taking away the question) as well as a new area in the liver, lymph and some extra fluid in the peritoneum. I’m not sure whether this will mean chemo yet, as it’s my last trump card I am very hesitant to use it. I see the oncologist next week. The risk is holding off on chemo too long and then not being strong enough.

I really can’t believe this is happening.

The plan at the moment is to file that away and have a great Easter
with lots of chocolate and photos.

That’s what I can give my kids.

We may even go to a new park.

Saturday, March 1, 2008

Firstly I must thank you all for the messages I have received. I apologise that I am very slack at replying individually, but I really do appreciate them all.

So I last updated as we were heading to Brisbane. The trip started great with a fabulous day at Movie World. After days of rain and overcast we had a beautiful day, and had a great time. We … OK, I was thrilled to see the addition of bumper cars where we all had a blast behind the wheel. Although it did take a few goes for Joseph to get the hang of it (“but Mummy you drove into me” “Yes I did and I’m going to do it again!!!”)

After that wonderful day the trip went rapidly down hill. After dropping the kids at my in-laws, Chris and I headed into Brisbane to sort out my port. Things were going along smoothly enough until the first scans were taken when I was on the angiography table. So there I was, hearing about the multiple life threatening potential complications of ‘fishing’ out a piece of tubing that was sitting in my right atrium and ventricle, all I could think was that I hadn’t said a proper goodbye.
Thankfully they were able to catch it, I was admitted over the weekend for multiple ECG’s but luckily I was given a pass for Saturday night and we were able to attend friends 70’s party, I must have relaxed as I fronted up again on Monday for them to insert a new port.
While we were there we met with the oncologist who informed us that there were no promising trials around, and we should continue to ‘watch and wait’ as I was still not symptomatic and start a course of palliative chemo to help when I did get symptoms.

So we picked up the kids and came back home.

Since then we’ve only had a minor hiccup as I was admitted with fevers and feeling unwell, seems it was just an infection and a week of IV antibiotics has perked me up no end. Luckily I was only in hospital overnight and the nurses came to the house for the rest of the course. I felt like a little old granny having the nurse pop round!

The other side of getting sick was the wake up call of not feeling well, and the thought of not having done what I want to do. It’s not admitting defeat, but I am putting together scrapbooks for the kids with favourite photos, as well as one with the photos of Bens Wish Trip (in 2004- so that’s how long I’ve been putting off that one). I’m not a scrap booker so hopefully the results aren’t too scary! We're also continuing with the renovations as the finances permit, and if anyone is wondering my bathroom is now absolutely beautiful.

Catch up again soon
Andrea

Friday, February 1, 2008

Wow, as usual what a long time since I have updated. Sorry. In the meantime we’ve had a fabulous Christmas and a great but exhausting Summer Vacation, We had some great times, visits with great friends, lots of time in the pool, but I must admit I was ready to tuck them into school again on Tuesday, They seem to be settling in well.

As for me, I headed over to the hospital after they got settled at school for a routine heparin flush of my port-a-cath. Usually simple enough but it seems it has had a mechanical failure … meaning the tube has come unattached and is now floating along near or in the right atrium of my heart. I should hear today what the plan is for that.

I was hoping that would be the only bad news I would have to report and the New Year would be off to a relatively smooth start. But no such luck. Yesterdays CT shows I now have lesions throughout both of my lungs and a questionable area in my liver.
The next step will be chemo again, a different regime this time, but first a visit to my other oncologist in Brisbane to see whether there are any promising trials I can sign up for. And hope
I must admit I have fairly leaky eyes, then I wander in a daze, do the jobs I have to do, get the kids off to school, pick up a few groceries (How are you today the checkout chick still asks), Then I come home to the house we’ve had some great times in and we have such plans for, and then I look at my babies rooms… and then the leaky eyes start again.

I will still fight.
I will not give up.

I am just very, very sad

Andrea

If anyone knows any great inspirational songs or quotes… please pass them on.

Tuesday, October 30, 2007

So I guess I've got some good news and some bad news.

The good news was that the surgery went smoothly, the tumour was from my ovary and was easily removed. My other ovary was abnormal and removed as well but after a good search through my insides the surgeon reported all else looked good...well as good as insides can look I guess!

And then there's the bad news.

The tumour turned out to be a metastases of the original bowel cancer, also known as a Krukenberg tumour. Of all the things it could have been, this was the worst.

The conclusion from my oncologists seems to be to enjoy now as it will come back. At that stage I will be given chemo again but there is no evidence that it will do much. Reading on the internet I find things like "overall mortality rate that is significantly high" and "gloomy outcome" and the very comforting " Most patients die within 2 years (median survival, 14 months)."

But to see me nothing much has changed. I'm still taking my kids to school, still busy with housework and laundry, still worrying about paying bills. Still say "fine" when the checkout chick asks me how I am. The biggest problem is the evening. when things slow down and there's time to think. I have 3 children and a husband I adore. There are so many events in the future that I have every intention of attending. There is just so many reasons to fight.

So I'll go now and kiss all my sleeping kids before I hit the sack and when I wake up the sun will be out and I'll just keep on going.

Andrea

September 12, 2007

It's hard to know where to start on this up date, but I guess traditionally the beginning is a good choice. When I last updated I was plodding along with the chemo, they ended up stopping it after the 8th treatment. I had had a lot of delays with low counts and upon rechecking the scans they weren't convinced the lesions in my lungs were metastasis after all. So chemo was stopped. And we immediately pulled the kids out of school and headed off for a holiday, we figured we'd earn't it!

So we headed south and had a fabulous time. We went to Dubbo zoo, Dubbo jail, Taronga Zoo in Sydney, Movie World, rode ferries, buses and cable cars, did a couple of laps of Bathurst's Mt Panorama racetrack in Chris' company car and visited our Nations capital Canberra.

Too soon it was over and we headed back home to school, work and the never ending bathroom renovations. (BTW never start renovations just before a cancer diagnosis).
The doctors had given me three months off before having another scan. A time to catch our breath, organise ourselves and hopefully finish the bathroom.

Which brings us to this week. Things were going to plan until Sunday when I woke with severe abdominal pain, and then to make a long story short a CT scan on Monday has shown a 15cm tumour in my pelvis ( and I was getting cranky that I was gaining weight!)

So the next step is surgery next Monday, probably the tumour is coming from an ovary but they wont be sure till they get in and see, the surgery could be quite extensive depending on what organs are involved, there's a 10 % chance I'll need a colostomy but hopefully it would only be temporary. As far as what it is, time will tell on that one too. Given how fast it appeared maybe a cyst, but given my history...

So now I have 5 days to enjoy. The kids have a much anticipated dance at school tomorrow, Chris and I hope to get out for a rare evening together and of course the bathroom renos will continue....

Wish us well and I'll update when I'm able
Andrea

Friday, May 25, 2007

Life's been fairly busy these days. One week is pretty well written off with chemo and the next week is spent getting things back into order and getting ready to start again and so it goes... until now when a case of low counts have stopped things in their tracks.

Thank you to everyone who has checked up on us, my terrible job of catching up by no means reflects how grateful I am at your kind words and good wishes. I've always been bad at writing and funnily enough this hasn't improved things!

Firstly I am happy to report that Ben is continuing to enjoy life off treatment. He is currently taking tae kwon doe, which is something that I hadn't encouraged while he had his port in.
As for me I had another CT scan which showed the lesions in my lungs have shrunk and nothing further has popped up which is the best result I could have had. My oncologist is now discussing my case with the thoracic surgeons to see what will happen next. I'll have a blood test on Monday to see if I can restart, the next treatment will be number 6 of 12.

Due to the change of plan this week I will be able to have a lot more fun on my birthday this weekend. Chris and the kids have been busy creating something in the shed which they are excited about. So I'll go and enjoy the last few hours of my 30's.

Andrea

Sunday, April 22, 2007

April seems to be problematic port month here. First I had my last round of chemo delayed to have surgery to try to sort mine out as it kinked itself off whenever I moved my arm (which became a bit of a problem during the 48 hour infusion). It seems to be healing ok so we'll find out on Tuesday how successful they were.

Then last week we headed down to Brisbane for Ben to have his off treatment bone marrow and LP and as his port had shifted and was no longer able to be accessed they removed that at the same time. He is also healing well and we'll get the results from those tomorrow.

The timing worked out fairly well as I wasn't feeling yucky while the kids had their Easter break and we were able to have a few outings, and yesterday was Relay for Life here which we all enjoyed. Now they're settled back in school for term 2, I'd better get back to it too.
Wish me luck!
Andrea

I am so happy to pass on the best of all wonderful news... Ben's LP and bone marrow are clear!!!

Wednesday March 21, 2007

Well it's official (drum roll please!) Ben is off treatment. What an accomplishment. And he's doing great, loving his class (especially sitting next to his best mate), he's in the pool every day and learning how to play tennis. He's in a great place and I am thrilled for him.
Next month we will travel down to Brisbane for his off treatment LP and bone marrow.

So now it's my turn to get over it, 2 cycles down and 10 to go. It's every 2 weeks so I have one good week and one not so good (last week I ended up an inpatient for 4 days), and at the moment one of the scariest words is the word "cumulative". 2 more cycles before I get another CT and see what happening in my lung and what can be done. It's a great diet plan though, as I can eat what I like this week knowing that next week nothing stays down... I know there are probably less drastic ways but I like to be different. Chris says it's the worst case of attention seeking he's seen!

Anyway we will continue to plod on here. Thanks for checking on us, I'll try to keep this updated.
Andrea

Saturday, March 10, 2007

I have been longing for 2007 for three years. It's the year Chris and I turn 40 and Ben turns ten, but way more importantly it's the year that he finishes chemo. Since that fateful day of January 9, 2007, he's had more than his share of needles and chemical pumped into his body. His last tablets will be March 12, 2007 ( I cross my fingers and toes as I say that!)

Despite that wonderful news, 2007 has not turned into the easy, straightforward maybe even a bit boring year I had planned. Last December I was diagnosed with bowel cancer, and from then things have gone from bad to worse as the samples taken during surgery showed it had gone to lymph nodes and then later scans found 3 lesions in one of my lungs. Quite a shock when I thought the most traumatic thing this year would be turning 40.

So now it's my turn and I have started chemo but they've told me that won't cure me. After a few more cycles I'll have another scan to see what's happening and discuss further treatment.

So I'm going to borrow Bens page to chat about me as well as him as I attempt to get my mind around this latest turn of events.

Andrea

"If Children have the ability to ignore odds and percentages, then maybe we can all learn from them. When you think about it, what other chance is there but to HOPE? We have two options, medically and emotionally: give up, or FIGHT LIKE HELL".

-Lance Armstrong

Monday, July 10, 2006

So here we are 2 years and 6 months after Ben was diagnosed still at it. As you may or may not know the treatment course for Ben will be 3 years and 2 months... if he was a girl it would have been 2 years and 2 months (they lack testes which is a popular location for relapse).

So with this in mind I recently travelled to visit little Hunters web page. She was diagnosed at the same time as Ben so I was bracing myself to read about her carefree "off treatment" life, which she fully deserves don't get me wrong.

So imagine my shock when I read her news, that after 2 months off treatment, she relapsed and is now starting the journey again.

It reminded me that this disease has no favourites, there are no lucky ones. From the time of diagnosis we are all passengers hoping for the fastest, smoothest route to the destination. For some there are detours, some get lost, and some have to travel again and again. As parents all we can do is support, hope our hugs will ease the journey. But ultimately, though we would do anything to spare our children, we are powerless in the direction taken.

So for us, at the moment, the road is smooth. For that I am grateful. We recently travelled to Brisbane for his latest LP which went well. He has settled into school, made some great friends and is doing well.

So on we plod, almost daring to start the countdown, but still concerned about detours. And if anyone actually still checks on this very neglected website: Thanks.

Andrea

Be strong little Hunter.

Friday December 9, 2005

The problem is the longer you put off updating, the more daunting the prospect becomes, and when you have put it off for over 3 months…

The bottom line is that we are all healthy and settling into our new life here in Australia. After we left Canada we had a brief (but wonderful) stop in Disneyland. The highlights seem to be Pluto stealing Josephs hat, the Buzz Lightyear ride and meeting Buzz himself and meeting up with my Aunt and Uncle whom I hadn’t seen in years. The stopover also set up a very quiet flight to Australia as the kids were exhausted and slept most of the way!

Once here we checked out Ben’s new clinic. It’s somewhat intimidating dealing with a major children’s hospital, but we’re getting used to it and it’s only every 12 weeks that we have to head down there, as the rest of his treatments are done locally. Shortly after we got here to Bundaberg Ben had a run of low counts and scored a brief admission with fever and neutropenia (I think it was just to check out the hospitals video game situation!) I had broken a bone in my foot at that time too which made getting around a bit complicated; I’m not really sure about the legalities of driving with the wrong foot but anyway! One thing I do know is not to answer the phone while driving, but that nice policeman and the hefty fine reminded me of that really quickly!

Things have settled down now and we’re getting into the chemo routine that will continue for another year. Every 12 weeks we travel down to Brisbane to see the oncologist and have and LP with chemo in his spine, then every 4 weeks it’s just a quick trip into Bundaberg Hospital to see his local paediatrician (who is lovely) and have some chemo in his port and other than that it’s just the usual bundle of pills at home.

Then we had the job of getting them into a school. After all the trouble Joseph had at his last school, his needs were top priority, but the school we ended up with has worked out beautifully for everyone. After an adjustment time when he tried all his old favourite tricks, Joseph has settled in and is doing wonderfully. As the Aussie school year comes to an end, we’ll have Ben going into grade 3, Joseph moving into grade 2 and disturbingly ‘little’ Amelia starting grade one!

Most of our weekends are spent in Uncle Dans pool, all the kids are loving the water and the time with their cousins. Then for a change of pace we head down to the beach and catch a few waves! I love Australia! (The latest we heard was that it was -20 back in Moose Jaw!)

So now that I have updated, it will be a much less daunting task next time. Hope you are all well.
Andrea

Monday July 10, 2006

Monday, July 25, 2005

When Ben was first diagnosed we were asked if we would move back to Australia, we couldn’t.

When we went back there for our Wish Trip we were asked if we’d come back, we did.

But now the time has come, with Ben settled in long term maintenance, for us to head home.

When we decided to move here, it was to be a permanent change, we thought we would be able to settle into life here. But since we’ve arrived there have been so many trials and struggles that we’ve had to weigh our options, look at the pros and cons, and make this very hard decision. It’s not been all bad, we’ve had some great times here, so we will remember those and move on. No regrets.

So here in the lazy hazy days of summer, we are planning a move, deciding what to keep and what to get rid of and selling a house (including keeping it clean for showings which has been somewhat tricky with 3 kids around!) We are leaving Moose Jaw on August 9th, stopping in Regina for clinic on August 10th and then heading off to Australia with a brief stop in Disneyland.

I’ll update once we get settled, things will be pretty hectic for a while getting everything sorted.
We’re all excited about it though, it feels right.

Friday, June 3, 2005

Relay for Life, 2004

Tonight is the Relay for Life.
Up until last year I had never heard of Relay for Life, my excuse is there are so many fundraising events for so many causes that it’s hard to know them all.
That all changed last year. That was when cancer became our ‘cause’.
Last year we were on a team, and stayed the night with the kids very excited about sleeping in a tent. But in the end it was overwhelming, the sight of our 7 year old walking in the Survivors lap, the luminaries with his name on, and mostly the sight of his bald head as he vomited into a garbage can. The final blow came shortly after we got home when he developed a fever and had to be admitted to hospital.
This year we’ll be taking Ben for the Survivor lap and festivities and then heading home for a good night’s sleep.
We’ll be there to celebrate that he is among the Survivors, recognizing all that he has endured to be there, and hopefully help him find strength to continue the battle.

Relay for Life, June 2004

Wednesday, May 11, 2005

Mothers Day, a time to receive hugs, kisses and hand made crafts. A time to reflect on all that is Motherhood, dwelling more on the triumphs than the tears. And a time to be thankful for these three people who call me mum.

Amelia at 4 1/2 is a princess. Despite having two older brothers she loves all things beautiful, and can often be spotted riding her trike or digging in the dirt wearing a frilly dress and beads. She is our early riser who climbs into bed for a cuddle every morning, and has a very tiring habit of annoying the boys to the point of distraction, just because she can.

Joseph is 6. He is affectionate, bright, daring and cheerful. If he sees you sleeping he will bring you a stuffed toy (or 6) for company. He has autism, which makes life extra challenging for him but makes the triumphs more rewarding. This year has brought so many troubles at school, I hope we soon find a way to help you more.

And then there’s 8 year old Ben. He has peacekeeping abilities the UN would admire. He is also Mr. Generous; he would give away his most treasured possessions just to cheer someone up. He tolerates taking a pharmacy of medications that make him feel sad, sore and hungry. He takes blood test and LP’s in his stride and even puts up with his overprotective parents. He is struggling at school, thanks in part to the medications and all the days he’s missed, but he’s thrilled to be back there with his friends.

So that’s the family. Ben’s treatment is going pretty smoothly at the moment (she says knocking on wood) He’s back at the clinic next Weds for an LP with chemo into his spine, more chemo into his port, and then another steroid pulse (yuck). And so starts another cycle.
17 months down, 21 months to go …

Tuesday, April 19, 2005

Today on the other side of the world is a funeral for our newest nephew.
Marcos Kevin was an 8 ½ pound beautiful baby boy, he was one week away from his planned c/section.
There are no explanations, only a devastated family left wondering why.

Dear Little One,

I remember
when your daddy first told us
What wonderful news
He was so excited
So were we.
We anxiously watched the weeks
Please not again.
But no
you were strong
A fighter

Another call
Your mummy’s sick.
You were with her
When no one else could be
Through the operation
Through the radiation.
You were there
And you were strong
And I’m certain you gave
Your mummy strength

The time went on,
You grew bigger, stronger
Nearly there now.
a mummy and daddy,
an entire family
eager to meet you,
already loving you

but then came the call
the call that broke our hearts.
So many questions
So much pain.

Dear little Marcos
Watch over your mummy
and daddy.
Losing you is so hard.
So many dreams
unfulfilled.
This was a time for
Hello
not
Goodbye.
Now we mourn the little boy
we never met,
but will never forget.

Peace to All

Saturday, April 9, 2005

I wanted to share a conversation I overheard in the kitchen last month.

Ben: All the snow will go on Sunday
Joseph: Or Monday or Tuesday or…
Ben: No… it will go Sunday, Sunday is the first day of Spring.
He was so adamant, and being the older, wiser brother the others just had to agree.
Then it ended up snowing on the first day of Spring.

Now two weeks later, Spring has definitely sprung. We have been watching the robin, and the squirrels playing their ’chasing’ games. The trees are full of buds, plants are shooting up from the ground, and amazingly the sound of lawnmowers already fills the evening as the lawn-deprived Canadians make up for lost time. Here in Moose Jaw the Snowbirds compete for airspace with the hoards of geese, and a surprising number of people are wearing shorts, showing some amazingly white legs!

Ben had a clinic visit just before Easter, he had (and still has actually) a stuffed up nose. He checked out OK and his counts were good so he got his chemo and we were on our way. Unfortunately that meant he was on steroids over Easter, but at least he was finished them before the main event, the birthday!

The Easter Bunny made his much-anticipated visit, and then the kids had a week off school when we enjoyed a visit from grandma and granddad. Friday April 1st was Ben’s birthday. We enjoyed his favorite pancakes for breakfast, a walk to the park and then dinner at Bonanza, with of course birthday cake for dessert.

Saturday morning we headed to the party. It went really well. Who would have thought that an event with 16 grade 2’s and 2 younger kids could go smoothly but it did and we all enjoyed it!

After all that excitement, this week was back to school. Ben’s still struggling with his stuffy nose, but so far he’s avoided a fever, so hopefully we will just plod along until he heads back to clinic on the 20th.

And as we let our guard down we were completely devastated with news from Australia, we grieve for our newest nephew who fought so hard and came so close, and for his mum and dad who have lost the light to brighten their world.

Our hearts are aching
All our thoughts are with you,
How we wish there was something we could do.

Friday, April 1, 2005 12:01AM

HAPPY BIRTHDAY BEN!!!

Eight years ago my first child was born.

Fast forward to last year, Ben was days away from finally getting his port in and we were phobic about anything that could cause another delay. Needless to say birthday number 7 was a quiet family affair.

Not so number 8.

Number 8 will again have the family day with presents and dinner at a restaurant, but I get the feeling that for Ben that won't be the highlight.
That will come Saturday when there will be a party with most of his grade 2 class.

We’ve not had many big parties, our family life is chaotic enough, so we generally don’t volunteer to add more madness.
This year we have chosen to celebrate life and to celebrate big.
There’s no doubt he’s earned it.

Tuesday, February 22, 2005

I’m sure the highway we take to the clinic is up there with the most boring roads. It’s about a 45-minute trip, with about 3 bends in the road. There’s a few highlights: the turnoff that we took to get the Christmas tree, the very unusual yellow-orange painted farm house and of course the tree that I was parked next to for numerous hours during a winter storm last winter. We’ve driven it in the middle of the day and the small hours of the morning, in sun, rain and of course snow.
The best we can hope at this stage is that we only have to travel that road every 4 weeks.
This month we very nearly made it.
We’ve had an uneventful few weeks, Ben’s been working hard at school, we escaped another chicken pox scare and got over numerous coughs and sniffles. We've enjoyed the excitement of Valentines Day and of course watched the groundhog, hoping for an early spring! The kids have this week off school, so except for the clinic visit on Wednesday we were just going to kick back and take it easy.

But then yesterday Ben, who has had a runny nose for a few days, woke with a cough and a temperature. Thus started a complicated day. First we had a blood test done in Moose Jaw to check his counts, which were still good. Then his oncologist decided he wanted to see him, so we bundled up and made the trip I love so much. He didn’t have a fever there, so he checked him out, gave a prescription for Amoxil and sent us on our way with instructions to head back to Moose Jaw for blood cultures if the fever returned.
So of course we were not long home when it was high again. Unfortunately getting blood from his port wasn’t as straightforward as we’d hoped and in the end they gave up and just took it from his arm.
Thankfully today although he is still coughing, his temperature seems to have settled, hopefully he is on the mend.

Tomorrow we hit the highway again for his 12 weekly LP, which he has under general anesthetic. Here’s hoping his chest is OK for an anesthetic and they are able to access his port …

To be continued

February 24, 2005

I'm very pleased to report a routine clinic visit yesterday. They were able to access his port and he had his LP. So now he starts a new 12 week cycle and hopefully it will be 4 weeks before we have to head to the clinic again. Until then we're back to enjoying school holidays!

Wednesday, February 2, 2005

This time last week we headed to the clinic, Ben’s first question for his oncologist was “do I get to go back to school?” Well his neutrophils were 0.6 so he could, but he was still off his tablets. Since then he had a 5 day steroid hit and no Bactrim (it was held to give his marrow every chance to recover) and today his counts are way up and he’ll start again tonight on a half dose.

So this week as well as Ben on steroids, we’ve also had Amelia unwell with high fevers and Joseph creating all sorts of havoc at school. So it’s been an interesting one to say the least.

Friday, January 14, 2005

I had a journal entry all ready to go. I had rambled on about how it’s a year since Ben was diagnosed. And then I rambled on about how well he’s doing now, how he looks great, his hair has grown back, he’s back at school. I said that for most of the time life goes on pretty normally, just remembering his tablets and trekking into the clinic once a month. I pointed out that for the most part you would never guess that he was on chemo, and I think a lot of people forget.
Then I must have jinxed things, I went on to say about watching for fevers and counts dropping and admissions. How it could happen any time.

And it did.

Out of the blue on Monday morning he spiked a temperature. So instead of getting him off to school we have to go to Regina to see his oncologist and have a blood test. When it turns out he’s neutropenic we get an automatic admission.

One year later, admitted to the same room. Talk about déjà vu!

So the last 4 days have been spent trying to cope. When your child has cancer and has been admitted you worry about infections knowing he has no resistance and worry about what has made his counts drop in the first place, not to mention the worry that he is once again off chemo. With two younger kids and a blizzard that closed the highway it’s all the worry plus a major organizational nightmare.

So yesterday he was discharged. His neutrophils had actually gone down from 0.1 to 0.0. He’s on antibiotic tablets and if his temp goes over 38 C (100 F) he’ll be back in hospital.

So we watch and wait and hope.

January 20, 2005

We got Ben's counts checked again today and after nearly 2 weeks off chemo he's still got 0.0 neutrophils.
His oncologist is happy to continue to watch and wait, as usual I will add my usual w... worry.

Saturday, January 1, 2005

Christmas was absolutely wonderful, and now the dust has settled we catch our breath and get ready to close the book on 2004.
This is generally a time for reflection.
So what about 2004…

2004 is the year we lost our naivete,
When we learned without a doubt that yes it could happen to us.
2004 is when we had to follow our instincts and say “no all is not well, something is wrong”
January 9th 2004 is the day that was confirmed.

The impact of Ben’s diagnosis hit harder than we could ever have imagined. In a heartbeat, with a single word, everything had changed.

It is the year we questioned what we used to hold strong and ask “Why”

It is the year I learnt more than I ever thought I would about pediatric oncology.

It is the year we went to Australia and had the greatest trip ever.
When we tried to celebrate the good days, and treasure the time spent together. And watched with amazement at how the kids handled the year.

So as Joseph says as we turn the page of a calendar, “That’s the end of that story.”
Goodbye 2004, Let’s move on to 2005.

My wish for 2005 is no surprises, maybe even a little boredom. Some sense of control would be nice, and more chemo. With one year practically done, there’s only 2 years and 2 months to go. (Childhood leukemia is one time when it does not pay to be a boy.)

To all our family and friends we wish you peace, joy and all things wonderful.
Happy New Year.

…For yesterday is but a dream,
And tomorrow is only a vision.
But today, well lived,
Makes every yesterday a dream of happiness
And every tomorrow a vision of hope.

Look well, therefore, to this day.

Sanskrit proverb.

Thursday, December 23, 2004

Oh the weather outside is frightful but inside it’s quite delightful, and since we’ve no place to go, Let it snow, let it snow, let it snow!

You can tell Christmas is very near when an expectant glance towards a window by a parent can bring immediate obedience from worried children. I wish I had that trump card all year round! The Christmas spirit is definitely alive and well here. We have the radio set on a station that is playing non-stop Christmas songs, the weather outside is most definitely frightful (this morning the thermometer was blank and it doesn’t do that until –30), and even the bedrooms are being cleaned eagerly so Santa doesn’t trip.

Things are going well here Ben’s counts were good again yesterday so he’s back up to 100f his chemo dose. I feel fairly prepared for Christmas, there’s heaps I didn’t get done but I’ve decided it’s nothing we can’t do without. Ben’s as excited as any child with only 2 sleeps to go before Christmas but poor Santa must be getting confused as the requests keep changing. He’s fighting a cold, so as usual we have our fingers crossed there’ll be no fever.

Thanks you for your support throughout the year. And forgive me for my lack of correspondence. I truly appreciate all the messages I get.

MERRY CHRISTMAS from our family to you.

Andrea, Chris, Ben, Joseph and Amelia

And so this is Christmas.
And what have we done?
Another year over
And a new one just begun.
And so this is Christmas
I hope you have fun
Your near and your dear ones
Your old and your young
And so Merry Christmas
And a Happy New Year
Let’s hope it’s a good one
Without any fear

John Lennon

Tuesday, December 7, 2004

Ben had his clinic visit last Wednesday, it went well but I kept him home for the rest of the week as he looked pretty rough, and his counts were low. This week he’s finished his steroid pulse, got his bounce back and is back at school. Now that that’s out of the way it’s time to get on to the more serious stuff of preparing for Christmas!
It’s very hard not to get caught up in the excitement, there’s a very Christmassy layer of snow outside (which unfortunately is accompanied by –20 temperature), the decorations are up, and there’s lots of talk about presents. For the kids school seems to be full of choir practices and making decorations. As for me I am busy with my annual job of leaving the preparations till the last minute. This weekend we will head out to cut down a tree.
We will have one more visit to the clinic, but it’s just for a blood test and could have been done here except the Snowbird pilots will be visiting the clinic. Next week, just in time for the concerts, Grandma and Granddad will be visiting.

So as we enjoy the magic of December, we wish you all well. This year has brought so much heartache that I can’t say that I’m sad to see it end, but Caringbridge has taught me that we are among the fortunate ones as we celebrate the holiday season with our three children. And for that I am truly grateful.

Merry Christmas!

Andrea

I will attempt to get a seasonal shot of Ben for the top of the page asap.

Tuesday, November 16, 2004

The kids are slowly coming down from the excitement of Halloween and it’s been pretty quiet here since. Ben’s counts have recovered and he has been increased back to a full dose of his chemo, he made it through another steroid pulse and he even had to have his first haircut in a long time. He’s also been at school for three weeks without catching anything bigger than a mild cold, which is practically a record.

Ben’s next clinic visit is December 1st. That day is causing a few memories as it’s also one year since we’ve had our mortgage. That means this time last year we were waiting to take possession. It had been an incredibly stressful year as we’d left all we knew in Australia and moved to Canada. I was anxious to get into the house, get the kids into school, settle in and catch our breath.

It was a big rush but we were determined to have everything “just so” for our first white Christmas. We went out and cut down a tree (that’s us in the picture gallery), decorated the house with the few decorations we brought with us, and a ton that we made and even cooked our first turkey.

It was perfect… a wonderful start for this new stage of our lives.

Ben’s first trip to emergency was Dec 26, and then we were completely blindsided by his diagnosis on January 9th. Happy New Year. All the hope and promise of the New Year gone in just 9 days.

So here we are, a year later. Again the Christmas lights are going up, and the kids excitement is growing. But this year it’s harder, the future is uncertain, the worry is continual, with a gnawing feeling in your stomach about what’s around the next corner, bracing for the next assault. We travel with tentative steps and try not to dwell on things, obviously I need to work on that one.

Thank you to those who check up on us, please leave a message so we know you’ve been.

Andrea

Sunday, October 31, 2004

This week, after his longest delay yet, Ben’s counts finally recovered enough to restart chemo and get back to school. What a relief and just in time for all the Halloween festivities!
Today we’ve got a very excited Snow White, a fireman and Harry Potter who will hit the streets later. There is no ‘trick or treating’ in Australia so they are still a bit stunned at the idea of going door to door collecting candy!
It’s a balmy 6 C at the moment, going down to an overnight low of -4 C so I’m not sure how long we’ll stay out. Our biggest problem at the moment is trying to keep them out of the candy we’ve bought to give out… I can deal with that!

Tuesday, October 19, 2004

Another Friday afternoon and another discharge.

We didn’t think we’d make it to Edmonton for Thanksgiving, but we did, but then we had trouble getting home. On the last night Ben had a painful swelling under his ear. By the next morning it was really sore and swollen so instead of heading home we headed over to Emergency at the Stollery Children’s Hospital.

After an ultrasound it was concluded that he had parotitis, an infection in the parotid gland. He was started on antibiotics via his port. They were going to send us back to be admitted in Regina after the first dose, but Ben was so uncomfortable that the 8 hour drive didn’t sound very inviting (Not to mention we wouldn’t get there before midnight) so we decided to stay there.
That was Tuesday and he was discharged on Friday. And we drove home in the snow on Saturday.

This week he’s on antibiotics but feeling great, he’s home on isolation as his counts dropped again, but he’s due for a blood test tomorrow to see if he can go back. He can go back to school when his neutrophils are 0.5, he restarts chemo at 1.0 (he’s been off since October 4th), and as of Friday he was 0.2… we’ll have to wait and see how quickly he bounces back.

He’s having such a bad run at the moment, he can’t wait to get back to school but it worries me just what he will catch next. I hate that he has to take his chemo every day but it scares me silly now that he’s off it. Two weeks in hospital have reminded me how horrible it is and fingers crossed we won’t be back for a while.

Andrea

Update October 20, 2004

With his neutrophils at 0.3 he's stuck in isolation for a while longer. His next blood test will be Monday, if it's still down he'll be booked for a bone marrow aspiration to check everything's still OK.

Update October 22, 2004

It’s like the good news bad news story… the good news is Ben’s neutrophils hit 0.6 today. Not enough to restart chemo, but higher than they’ve been for a while. The bad news is that our fully immunized son (who has been isolated at home or in hospital for the last 3 weeks) seems to now have rubella (german measles). He’s still feeling well in himself, so it’s another waiting game now to see how this treats him and then what it does to his counts. I really hope he gets back on chemo soon.

Andrea

Friday, October 8, 2004

There are some weeks when cancer barely gets a mention. Weeks when life is about normal stuff like school and homework and riding bikes. Not forgetting to take the tablets, but more interested in getting on with life.

They are the good weeks.

This was not a good week.

This was the sort of week that reminds you of the dangers of the disease he is battling. It shows how a simple virus is now a threat, and how quickly blood counts can drop, which puts him at risk for much bigger problems. It reminds you how quickly things can change. But it sure makes you appreciate the good weeks.

After 5 days Ben was discharged this afternoon. Instead of putting our feet up and collapsing in a heap like we should, we have decided to go ahead with our plans to spend Thanksgiving in Edmonton. Once there we’ll probably collapse put I’m sure the smell of turkey will rouse us!

Happy Thanksgiving
Andrea

Sunday, October 3, 2004

I guess it’s the predictable effect of going back to school, but so far in three weeks Ben has missed three days. His counts are great but unfortunately that doesn’t help against the myriad of virus’ lurking there.
Currently he has croup/bronchitis. Awful cough, hoarse voice. We took him in to see the paediatrician on Thursday who decided there was no need for a blood test as he didn’t have a fever. So predictably at four o’clock on Friday morning he spikes a fever and we have to make the early morning trek over to the Emergency room in Regina. They let us go after checking him out and checking his counts which are still OK.
He was still getting temps yesterday so he was started on Amoxil. Today although his cough continues, the temp seems to be settling so hopefully he has turned the corner and we have avoided an admission. Fingers crossed.

Our thoughts are in Australia more than usual as Ben’s Auntie has her surgery today. We are once again saddened and stunned by life’s events. It’s yet another reminder of the uncertainty of the future.
We wish you well.
We wish we could help.

Andrea

October 4, 5pm
Unfortunately Ben's fever has come back, his counts have dropped and we've won an admission. Looks like we'll be in for a while at least.

Tuesday, September 14, 2004

The only problem that I can see with amazingly fabulous holidays, is the reality shock when they’re over. Somehow you’re supposed to slot back into your regular life and not dwell on how much you’d rather be on vacation. We’ve been having a bit of trouble with the transition.

As I’ve mentioned the trip was wonderful. I’m ashamed to admit I haven’t contacted the girls from the Children’s Wish Foundation yet. I’m not sure how to begin to thank them for what they have given our family. It was a time of laughter and fun, and a chance for us all to recharge and strengthen.

So about the trip… the first eight days we stayed at Sea World on the Gold Coast in Australia. Ben’s actual wish was to go to the theme parks there, so we were given a pass to allow us to go into all the parks as much as we wanted. We tried to pace ourselves and have a big day and then a slower day but it didn’t quite work out that way and we were exhausted at the end of each day (at least that meant no battles getting the kids to bed!)

Chris’ whole family was able to meet us there which was great, and we were also able to catch up with some friends. The kids had a great time on the rides and being winter there wasn’t big crowds (but the weather was wonderful, much better than the summer we had here). One of the many highlights was a private meeting with Scooby Doo and the rest of the gang at Movie World.

The trip home was complicated with fog and missed planes, as a result we ended up going through Los Angeles. When we arrived there we were informed that our luggage hadn’t made it which seemed lousy at first but we sure didn’t miss dragging them through the next 3 airports!

We had about 2 ½ days to get on to Canadian time for the boys to start school on Monday. Ben was so excited to be back at school for the first time since Christmas. It’s been a nervous time for us torn between wanting him to get back with his friends and wondering what he’s being exposed to.

I’ll end this epic entry by announcing that as of September 1, 2004 Ben is officially in the Long Term Maintenance phase of his treatment. The good news about that is that he has finished the more intensive part of his treatment, the not so good news is that he will be in this phase of repeating 3 month cycles of chemo until 2007.

So that’s us. Thanks for checking in.
Andrea

P.S. I'll have holiday photos soon.

Sunday, August 29, 2004

Two weeks away seems like the whole world should have changed,
But I’m home now and things still look the same.
I think I’ll leave it till tomorrow to unpack,
try to forget for just one night that I’m back in my flat
On the road where the cars never stop going through the night
To a life where I can’t watch the sun set,
I don’t have time, I don’t have time.

I’ve still got sand in my shoes and I can’t shake the thought of you
I should go on, forget you, but why would I want to
I know we said good bye,
anything else would have been confused
But I want to see you again.

“Sand in my shoes” by Dido

Well for those who wondered whether we’d return, we did.

Our 11 days in Australia were absolutely wonderful, action packed, fun, perfect.
Our trip home was a blend of missed connections, lost luggage, and exhaustion.
And now we are struggling to get in the right time zone, but not having much luck.
We were all awake this morning from midnight until four am, and then slept until noon.
The boys start back at school tomorrow so hopefully they will be able to sleep tonight.

I’m not sure how to begin to update here but I will attempt it later in the week when things settle.

Thanks for checking in on us.

Thursday, July 29, 2004

I'll borrow the article from the Moose Jaw Times Herald for my latest entry

Granting a wish

This August, Ben Vohland will be allowed to go home.

More importantly, he’ll also be able to forget about lymphoblastic leukemia for at least a little while.

Ben, six, was diagnosed with the disease earlier in the year, just months after he and his family arrived in Moose Jaw.

Now, thanks to the Children’s Wish Foundation, the Vohlands will get to return home to the Gold Coast in Queensland, Australia, to visit with family.

Chris Vohland, Ben’s father, said the trip has already been beneficial because it has helped Ben through his treatments.

“It’s been something he’s held onto at all times,” he said.

The criteria to be considered by the Children’s Wish Foundation is that the child must be diagnosed with a life-threatening illness. The child must also be between the ages of three and 17.

Parents or anyone else who knows the child often contact the foundation to nominate someone for a wish. Sometimes the child will even contact the foundation, though often physicians and medical personnel do, too.

“It’s just incredible how good that organization has been. They’ve stayed with us through the whole process,” said Vohland.

Ben goes for treatment once a month. He also recently went through intensification, which means that his treatments and medication were increased.

Ben is getting over the process and is doing well, according to his father.

“He remains in remission. The cancer is basically under control,” said Vohland. “It is very surprising how well he is handling it. He’s in good spirits and has been very good and cheerful through all of this.”

Carla Loney-Tindall, a representative of the Children’s Wish Foundation said every detail of the trip has been planned for the Vohlands. She noted that often parents do not have the time to work out all of the details for such a trip.

“We shape it and mold it until it is perfect for that family. This (Australia) is home for them,” said Loney-Tindall.

She pointed out that granting a wish is not only beneficial for the child, but for the whole family, which is also affected by such an illness.

Loney-Tindall does not want people to to get the wrong impression about the foundation.

“People think if they’ve accepted a wish then they’re accepting a fate, (but) we have so many children who are survivors,” she said.

“It (illness) takes them out of their normal realm of being a kid. This lets kids be kids again. It is a short escape from their daily routine.”

Friday, July 16, 2004

Last weekend Ben and I did some shopping and happened to notice a sign for “Bedtime Stories in the Park” we thought it sounded interesting so decided to check it out. We were expecting someone reading to the kids but what we found was way better, the kids went up on stage and got dressed up and acted out the stories. It was hilarious, and it will be on weekly for the rest of the summer (that’s unusual for us we usually find out about things the last week they’re on!)

Then came the moment of truth, on Wednesday Ben needed to have at least 1.0 neutophils to restart his chemo and not be delayed another week. If that happened we would have enough time between school and clinic to fit in his wish trip. He needed 1.0 and that’s exactly what he got and he officially started interim maintenance #2. He tolerated IM#1 really well so we are hoping for the same this time round. Given that and the fact we have finally (16 months after applying for them) received the kids citizenship cards plans are underway for an August trip to Australia!

We’re able to enjoy summer a lot more now that Ben’s counts are better and we’re out of isolation, and it’s definitely good for the soul.

Friday, July 9, 2004

Today, July 9th will mark six months since Ben was diagnosed. To mark the occasion I have decided to think about the top 10 things I have learned since January 9, 2004. It was tricky to come up with 10 things, I nearly changed my topic to the top questions, but then it would be impossible to limit it to ten.

1. It doesn’t always happen to someone else.

2. Sometimes when you think you can’t possibly cope with anything else… you have to.

3. Any distance from friends and family is hard.

4. There is little comfort from a good prognosis when children still die.

5. Cancer changes the way you look at the world.

6. Support is sometimes found in the most unexpected places.

7. There are some conversations you shouldn’t have to have with your child.

8. Leukemia treatment for boys is 3 years and 2 months of chemotherapy.

9. I know it won’t change things, but I will continue to worry about my child.

10. Value today.

Tuesday, July 6, 2004

Well the counts are in...and they're too low to go on at the moment. We haven't decided what this means for the trip yet.

Sunday, July 4, 2004

Goodness it’s been a while since my last update. As far as Ben’s chemo there’s not been much happening, we’re hoping Ben’s bone marrow is busy making new cells. His next blood test is on Tuesday to find out whether he’ll start Interim Maintenance #2 (IM# 2) on Wednesday or be delayed again. Ordinarily it wouldn’t be a big problem, but with big summer plans pending we’re eager to see the results.

I’ve been having an ongoing battle with the Canadian Citizenship department, seems in their infinite wisdom they’ve ignored our change of address and have mailed the kids citizenship cards to Australia. Currently the Sydney dept think they’ve found them and are attempting to get them back to the Canadian department who will then attempt again to mail them to us (of course they couldn’t mail them straight to us).
The kids were only given temporary passports (now expired) until they got citizenship cards. So now not only is their ID currently lost, but our plans for Ben’s wish trip hang on them being found. It would be one thing to delay because of his condition but absolutely unforgivable if it’s due to this mess.

Moving on to happier things we had our first graduation on June 23rd. Joseph graduated from kindergarten!
While this is exciting in any family, as Joseph is autistic it is quite an accomplishment. As I sat and watched him sit in line and then accept his “diploma” I got quite teary (of course that doesn’t take much these days). School will be quite a challenge to him, but he’s starting on time, and I am very proud of him.

So that’s about it for us, we continue to stay close to home as Ben’s neutrophils are so low, but we were all thrilled to have a visit from my wonderful friend Maxine, Max… Thanks.

I’ll update on Tuesday with the results!!!

Thursday, June 24, 2004 7:35 AM CDT

Well Monday night marked the last tablet of delayed intensification. Thank Goodness. Now Ben gets a few well earned weeks to recover with the next blood test not scheduled until July 6th.
He had a blood test on Monday to check his counts. His hemoglobin had recovered somewhat with last weeks transfusion, but he remains neutropenic which stops any thoughts of one last trip to grade one before the summer break.
Things are pretty quiet here. Chris made it home safely. Saturday was even nice enough to have the wading pool out. The kids had a blast and have been wanting it everyday since but the ever elusive warm weather has gone again.
So for now I guess we should just take a deep breath and relax while we can, the next fever could be just around the corner…

Thursday, June 17, 2004

Just a quick note today as we're getting ready for another trek to Regina. As expected Ben's hemoglobin has dropped again and he is going to have a transfusion. Fortunately he is feeling well in himself and today marks the last dose of ARA-C, so he now has a couple weeks off for his bone marrow to recover. If we can avoid the old fever and neutropenia admission we'll be real happy!

Tuesday, June 15, 2004

Here we are at the start of another week of Delayed Intensification. Hopefully there will be no surprises as Chris is away at the moment. A late night fever trip to the hospital with my three children does NOT sound like a good time!

This morning bright and early (well early anyway), we all headed off to the clinic. Ben had a check up with his oncologist and then got his port accessed for bloods and Ara-C. His port will then stay accessed for daily Ara-C infusions in Moose Jaw till Friday.

His counts today were down as we pretty well expected them to be. He’s neutropenic again and also his hemoglobin has taken a dive and is sitting at 85 (Below 80 and he’ll get a transfusion). When he gets his chemo Thursday they’ll check again and we’ll go back to Regina on Friday if he needs blood.

I’ll throw in a little reminder here for the importance of blood donations. Ben has needed 3 transfusions since diagnosis and he was able to get them because of someone’s generosity. To all the people who take time (and lets face it they could be doing something a whole lot more fun) to donate blood to help those in need, I give my wholehearted thanks.

So that’s how our week is shaping up. Chris will be home on Thursday, I must say that this week has worn me out, I love my kids and will defend them with all I’ve got… but as I sit here at the end of the day, I feel like I’ve been hit by a truck.

Thanks for checking in on us and be sure to drop a note to let us know you stopped by.

Andrea

Wednesday, June 9, 2004

I know that probably everyone’s life has some surprises, but at this point I would love to have at least some sense of control back. Life is currently like a roller coaster, who knows what’s around the next corner.

I’ll start my update back at Relay for Life (was that really less than a week ago!?) It was a good night, but I think I would have enjoyed it more in the days when it was just a good cause. It hit a bit too close to home at the moment and walking around the oval in the light of the luminaries gave me perhaps a little too much time to think about things.
The kids enjoyed it, and they all slept so well in the tent that we now have big camping plans for the future. The morning brought an earache for Ben. It settled quickly and we didn’t think too much about it as we finished the Relay.
Once home the plan was to have a quiet day taking turns snoozing to recuperate from the night. That was the plan. It was about 10 am when Ben’s ear started bothering him again and his temperature went to 38.3 C (anything over 38C and we must contact the clinic). We were given the OK to get him checked here in Moose Jaw, and found he had a very inflamed ear and he was once again started on antibiotics. Our oncologist had just finished telling Chris to just keep a close eye on him when I checked and found his temp had gone to 39.3C. With that we had to bring him in prepared for admission. That was definitely not on the plan.

So apart from a slight fever in the wee small hours of Sunday (just high enough to keep him in another night) things settled down quickly and we finally got out of there on Monday. Tuesday (yesterday -I think it was) morning I bundled everyone up and we headed back to the hospital, this time for a planned admission for chemo. What a day, everything went fairly smoothly but I was never so glad to see Chris as when he came to collect the other two and take them home. Today was pretty tough on poor Ben, it started with chemo in his spine, then more iv chemo before he was discharged and then ended with chemo tablets before he went to bed. I guess there’s a reason they call this delayed intensification.

One thing that happened that I certainly didn’t plan for was afternoon tea with Princess Anne. But lo and behold that’s where we found ourselves on Sunday afternoon. Ben informed me that Princesses are “kindof a girl thing” but we went along anyway. We were looking particularly daggy as for some reason I failed to pack any formal wear. So we were introduced to her, Ben was given some pretty cool pins, but I’m pretty sure his favourite part of the event was the chocolate covered strawberries.

For the next 2 days we have to go into Moose Jaw hospital for more chemo. Then the plan is to have the weekend off before starting it again next Tuesday. That’s the new plan…

You know… I never liked roller coasters.

Friday, June 4, 2004 2:35 PM CDT

Tonight's the Relay for Life. Why is the Relay Overnight?

Someone sent this to me and I wanted to share it:

Clear your mind and picture…

It’s daylight. Life is wonderful. You’re healthy, happy and looking forward to the future. You’re looking forward to your child’s dance recital or taking your child to Disney World for a vacation. You’re looking forward to the new house you just bought. You have a new dream job that you’re thrilled about.

But then…darkness falls.

You hear those words “You’ve got cancer,” or worse, your child has cancer. Your life has suddenly become very dark. You don’t know what the outcome will be. You feel there is no hope in sight. You start your treatments. You’re nauseous and you have no hair. You’re exhausted from caring for your child and from the agony knowing there’s nothing you can do to make him healthy again. You couldn’t possibly feel any worse.

Until…

The sun starts to rise. The tumor is shrinking. Your treatments are working. You’re getting your appetite back. Your child feels well enough to go out and play for just a few minutes. There is hope.

It is now daylight and you’re in remission. You have your life back. You’ve made it through the night and the darkness. You celebrate life in the daylight knowing that the darkness of nighttime is behind you.

That is why we Relay,

This is why Relay is an overnight event.

We had Ben's counts checked and they're up again so he's all set to go and enjoy the night. Ben will be walking in the Survivor walk, I've got my hankies packed for the emotional bits.

Andrea

Monday, May 31, 2004

It’s been pretty quiet here on the chemo front as the protocol allowed for a little time to recover before the next assault. But apparently it wasn’t long enough as Ben’s neutrophils were still too low today (0.45) to continue with the second half of delayed intensification (they needed to be 1.0). It was quite unexpected, he’s feeling better and stronger in himself these days, so I thought it was getting out of his system. He’s never been delayed before so this is new territory for us. We’ll take him in next Monday to see if he’s right to go on then.

I guess the good news is we’ll be having a much quieter week than we had planned for (hopefully we'll be able to finish off his room). And this weekend is the Relay for Life. Ben will probably be able to enjoy it much more than if he had just had another big whack of chemo.

Saturday, May 22, 2004

Well Ben’s fever settled and we’ve made it home in time for the long weekend. And what a weekend… the Circus is in town and the long awaited Shrek 2 has finally hit the theatres, unfortunately we’ll not be able to take in either of those events. Ben’s neutrophils are still sitting at 0, which leaves him with absolutely no defense against infection, so we’re not venturing too far from the safe confines of home. This week has been full of reminders of how our life is like a tightrope walk at the moment (given that who really needs the circus!) At least the weather is cooperating it’s currently a rainy 7 degrees out there so it’s not too inviting.
Ben’s feeling tired these days, and hungry as the latest pulse of steroids kicks in. He’s in a hard stage (delayed intensification) but gets a little break now and doesn’t get any more chemo until June 2nd (or later if his counts haven’t recovered by then). The only things coming up are blood tests on May 26 and May 31.
In our house no long weekend is complete without a project, and so (probably to try to maintain some sense of control) this weekend is no different.
The mission: to give Ben the room of his dreams, somewhere to escape to, rest in, and feel safe away from the worries of the world and do it all within our budget. I’m not sure how we’ll accomplish that, but we’ll do our best. It will be Scooby Doo and Spiderman (I could say that there is deep symbolic reasoning for that but really they’re just his favorites). I’ll let you know how it turns out.
Better go, my paintbrush awaits!

Andrea

PS think of me Weds as the birthday bird arrives again. I think this is one year when I actually feel much older than the numbers say.

Monday, May 17, 2004 2:49 PM CDT

I've just got time for a quick entry; Ben developed a fever last Friday and when we checked in at the clinic his neutrophils had gone from 1.9 on Weds to 0.1. That scored us an automatic stay in the big house.
It's been a very boring weekend but as his neutrophils are now 0.0 we won't be going anywhere soon. I have been staying with him but just popped home to get some clean clothes. Hopefully he's not abusing his buzzer privileges while I'm gone.
He gets another whack of chemo on Weds so who knows when his counts will start to rise... It's far too weird being back there, I'm having flashbacks to January (I'm not sure how we survived 5 weeks there!) We've put the SOS out to my parents so Chris can get back to work.
Ben's feeling fine and we're not going too stir crazy in that little room... yet. It’s a bit like a bingo game waiting for them to call your numbers.

Andrea

Monday, May 17, 2004 2:49 PM CDT

Monday, May 10, 2004 9:51 PM

The much-dreaded Delayed Intensification started last week. Wednesday we headed into Regina and the day started with the very first use of Ben’s port. He coped marvelously with it and had to admit it was a big improvement. Then he was off to the OR for his LP and IT methotrexate before returning to the clinic for Vincristine and Doxorubicin via his port. To top it off he also started a 7-day pulse of steroids. He tolerated it all well and with Zofran on board to ward off any nausea we headed for home.

Thursday was pretty quiet. Ben was tired and a bit gray but still able to do a bit of work with his teacher.

Friday we were back to the clinic again, this time for the infamous PEG injections. Beforehand I had the dilemma of when to tell Ben, caught between not wanting to keep things from him and not wanting him to worry himself silly about something that had to happen. He knew we were going for more medicine, and he had asked me if it was going into his port again, which I was able to answer 'no'. Finally as we were about a block from the hospital came the question “ How are they going to give me the medicine”. There was a certain amount of disbelief as he clarified “they’re going to do what?!”

I was very proud of him as he held still while they gave him needles in both legs at the same time. Then the theory was we had to wait around for 2 hours and then head home. That was the plan, but apparently we forgot to tell Ben. An hour after the injections he was quite flushed in the face, then about 15 minutes later he said his foot felt funny and when I checked it, it too was bright red and he was covered in a rash. I told the nurse and they quickly got him back in the treatment room where they had to access his port and give him some hydrocortisone. By this time he was covered in hives and his face was swelling. Luckily the hydrocortisone kicked in and his breathing and heart rate started to settle. He got quite a fright from the event (as did I) but typical for Ben he soon wanted to get up. He had another Benadryl dose (he’d already had one before the needles) and finally at about 4pm was finally discharged.

Since then he’s been very tired, actually volunteering to nap (something that hasn’t happened since he was 6 months old). Still able to play playstation though! He knows we’re heading back to the clinic on Wednesday and has checked with me a few times to ensure that it’s not for any more needles in the leg (it's not).

I’ll end this on a good note by saying that one terrific thing to come out of this week is that Ben is finally able to swallow tablets! I know that may not seem like a big thing, but believe me it’s huge around here!

Just out of interest there’s yet another heavy snowfall warning in effect here for tonight and tomorrow. Amazingly it doesn’t coincide with our pilgrimage to Regina this time… unless it’s late.

Anyway thanks for checking up on us.
Andrea

Friday, April 30, 2004 3:26 PM CDT

This week we had summer, it was Tuesday. Not to be confused with Wednesday when it snowed, or yesterday when the wind could blow you across town. What a place.

I haven’t updated the website for the simple reason that there’s been nothing to say. It’s been great. We have been enjoying our last week of interim maintenance #1. Ben’s had a pretty good run. He hasn’t had blood test for a month. It all seems a bit surreal actually. Reality will hit with a bang next week as we venture into delayed intensification. It officially starts on Weds with the first access of his new port for a blood test. Then as long as his counts are good he’ll have an anesthetic for an LP with Methotrexate in his spine and then Vincristine and Doxorubicin into his port and another pulse of steroids. Friday we head back to the clinic for his PEG injection (I haven’t mentioned that one to him yet).

So we’ll do our best to have a great weekend. Apparently summer will be back on Sunday (wonder how long it will hang around this time!)

Friday, April 23, 2004 2:30PM

Ben continues to do well. His headaches and nausea seem to have settled and his energy is coming back (certainly has enough energy to fight with Joseph and Amelia). These days he's just taking his 6mp daily, methotrexate weekly and of course his beloved Bactrim ('pink medicine') on the weekends, with nothing else scheduled till May 5.

This week brought mail from the "Crocodile Hunter". They sent two very generous care packages (one for Ben and one for another fan at the clinic) and also included a DVD and poster for the clinic!
We made a surprise visit to Mrs. D's grade one class on Monday. Ben misses the kids a lot, and thoroughly enjoyed joining them for music class.

The biggest news for me this week is that I'm heading back to work tomorrow. I'm trying to tell myself that I'm looking forward to the change, meeting new people and helping out with the finances, but those who know me will know I'm worried sick and anxiously thinking about how long it is since I have worked in Canada. It's been so long that although I remember thinking how different nursing was in Australia, I can't remember what the differences are.

Monday, April 19, 2004 10:00

Spring break is officially over. I have just bundled Joseph onto the bus. Amelia is watching cartoons and Ben is still snoozing, so I will take advantage of my quiet house to catch up.
Ben continues to do well. He doesn’t have another blood test done until he starts delayed intensification (I don’t like the sound of that) next month (May 5) so we are assuming they are OK and we’re getting out as much as possible.
The exciting news from last week is that CHILDRENS WISH FOUNDATION contacted Ben to ask him what his wish was. I knew what he wanted, but I had been nervous to encourage him too much until it was confirmed. But now we know that this wonderful organization is flying us all to Australia for a holiday!!!!
We’re not sure about the timing of the trip, we’ll have to check with his Doctor and see how he does with DI. We’re hoping for August to avoid missing anymore school. It’s so exciting. We'll keep you posted.

Tuesday, April 13, 2004 11pm

Warning.
I’ve been trying all day to get psyched up to write an upbeat entry, with no success.
Things are going well. Joseph and Amelia are doing great. Ben is recovering from last week’s surgery, doing well I guess. It seems odd to say that, he’s ridiculously tired, having frequent headaches, threw up after nibbling a bit of dinner, yet my pat answer is that he’s doing well. With Ben the rules have changed, what was bad seems to be, at this point, normal. What would be bad now remains mostly unspoken.
100 days ago we received the horrible diagnosis that changed everything. Don’t ask me why I counted. It’s a strange thing actually. I have trouble remembering beyond those 100 days, trouble remembering a time when my biggest worry was how he would fit in at his new school. We went from the normal parenting zone into an almost parallel universe. Living along side our old life but not truly understanding it anymore.
I hate the fact my son has to deal with this. Hate that he had to ask me why he got cancer. I hate the fact that while Joseph and Amelia were having a wonderful time wrestling with Chris; Ben was lying down with a headache. I hate the fact that he can’t go to grade one with his friends. I hate the fact that he knows Dex makes him hungry and Vincristine makes his legs ache.
I know I’ve just got to deal with it, I should quit sitting here feeling miserable, and think of things I should be grateful for. One of the worst parts in all this is realizing that there are so many horrors out there that people are dealing with. The odds are in Ben’s favour; some don’t have that luxury. But I’ve always been a worrier, and there’s just so much to worry about these days.
So I will go off to bed. Then I’ll deal with tomorrow.

Thursday, April 8, 2004

As I sit myself down to write this I realize that the day I have both anticipated and dreaded is over.
Ben finally has a port. He was terrified, but was able to keep himself calm and I have never been more proud of him. And now no more multiple attempts to get an iv started or for blood tests. One quick needle –done. I know that still sounds horrible for a 7 year old but it will be so much better than not having one, there was nothing ‘quick’ about that.
If you’re interested in seeing what’s behind the lump in his chest click here: port

Thank you to everyone who called or emailed their support for Ben yesterday it was greatly appreciated.

He’s doing great today. Regular tylenol is enough to allow him to play the playstation (and lets face it that’s what’s most important).
Me on the other hand seem unable to finish anything I’ve started all day. I’m not sure what my problem is but I’m vaguer than usual if that’s even possible!

And now it’s over and it’s suddenly Easter. I had big plans for sending cards out and sending Easter eggs to school, but I guess I’ll have to try again next year (famous last words for me).

Anyway I hope everyone reading this has a Happy and Healthy Easter, please let us know you popped by. I wish you could all come around for coffee. I’d love to tell you all in person just how much it has helped to read your kind words. I certainly don’t recommend moving just before something like this but I’m glad at least it happened after they made email.

Monday, April 5, 2004 12:19 AM CDT

There’s a strange phenomenon going on in Canada at the moment. Its called Spring!
Having been out of the country for so long I had forgotten the impact of warm days after a long winter. There are so many people. We moved into our house in mid December and have barely seen a soul around. Now all of a sudden there are people everywhere, walking, riding bikes, jogging, even sunbathing (although those of us recently moved from Australia were still wearing jeans and sweaters). And you can’t help but get caught up in it. This weekend we’ve been bike riding and walking, and packed up the wagon and headed out for a picnic, it’s been great. Also our yard that we have only seen covered in snow will soon to be blooming with surprise plants that are popping up.
One thing this has taught us is to seize the day. We don’t know how long Ben will be feeling up to going out, don’t know whether we’ll be able to manage a vacation this year, don’t even really know what will happen tomorrow. But for today all is well and so we will enjoy.
Looming on the calendar is tomorrow’s blood test before Wednesday’s operation (insertion of a port-a-cath, lumbar puncture and bone marrow). It’s weighing heavy on our minds so the distraction of spring is well timed. Off I go to put away the winter wear although this may be a mistake as I’ve been told we’re not finished with the snow yet, again we must seize the day.

April 6, 2004 9pm
Ben’s still got his cold and cough but his counts are good, and his chest is clear so he's set for surgery tomorrow. Or as Chris announced as they came out of the GP’s office ‘he’s go for launch’. Today has been busy which hopefully has helped him keep his mind off things (it's definitely helped me). So tomorrow morning we head off to Regina (hopefully we’ll have good weather), first to the clinic to see our oncologist and then across town to the other hospital where he’s booked in for 1pm.

Thursday, April 1, 2004 11:00 AM CST

Today is Ben’s 7th birthday.

I searched to find the perfect card
to sum up how we felt

Of course it had to say Happy Birthday
to a wonderful son.
It definitely needs a Superhero,
Or one of the many characters he loves.
It would need to mention
how proud we are of him,
each and every day,
how we love
his sense of humour,
and treasure the laughter
that he adds to our life.
And how we admire the strength
he’s shown
as he battles this disease.
And how sorry we are
that he’s needed
So much strength.

I couldn’t find the card
that said just what I wanted to say.
But if anyone finds it
Could you please let me know.
I’d like to buy it.

Saturday, March 27, 2004 3:17 PM CST

Things are pretty quiet here, Ben’s getting stronger daily, at the moment his biggest concerns are getting to the next level in his playstation game, and making plans and requests for his birthday. Pretty normal stuff. His headaches and nausea/vomiting appear to have settled down this week.

He had a blood test on Wednesday that went well. WCC 3.9, Neuts 1.17, Hb 104 and platelets 614. His counts were lower than they have been (so it actually looks like the chemo is doing something) but not too low that he is unable to fight off infection. Now he’s just taking his daily 6MP and weekly MTX, with his least favourite Bactrim on the weekends.

I’ve just got a tutor organized to put some of his new found energy to good use. She’ll come over for an hour at a time, three mornings a week. He won’t be able to go back to school until September, and he’ll be missing time for years for clinic visits, etc so I would hate for him to fall behind already.

One of the little girls who rides the school bus with Joseph came down with chicken pox last week so he’s getting a daily full body check. Ben’s never had them so at the first spot on Joseph poor Ben gets rushed into the clinic for an injection. (Fingers crossed it won’t be on his birthday). And just in case we were missing doctors Amelia started running temps and needed to see one, she’s got an ear infection so she’ll be on antibiotics for a few days.

So I guess we’re adapting. Trying to focus on the day without stressing too much about what’s around the next corner, but bracing for the corner all the same. We’re getting him to think about his wish, hating that he qualifies for one but so grateful for the organizations that will give him what he most wants. In his life full of things to dread it is wonderful that he has something fantastic to anticipate and dream about.

Sunday, March 21, 2004 10:32 AM CST

We're enjoying a lovely quiet weekend here. Well as quiet as it could be with 3 kids under 7.
The Moose Jaw Times Herald featured a story on Ben yesterday. You can read it at http://www.mjtimes.sk.ca/ if you're interested.

Thursday, March 18, 2004 11:09 AM CST

Thursday, March 18, 2004

It was a big day out for us yesterday. Ben had two appointments in Regina in the afternoon so we packed everyone up and headed out. (OK maybe I was a little nervous to make the trip alone after the storm last week) These days car trips are usually less than enjoyable with 3 kids in the back seat with limited elbow room, but it actually went quite well (although I admit having the DVD player with us probably helped a bit)
The first appointment was with the plastic surgeon looking after the former ulcer on Bens arm. It’s healing really nicely and we don’t need to see him anymore. That’s such a relief.
The second appointment was with the surgeon who will be putting his port in. All going well that’s set for Apr. 7 (Knock on wood). We had to wait over two hours to see him. Luckily it was a well-equipped waiting room so the kids didn’t get too restless. I think they should warn you when you get diagnosed just how much time will be spent waiting, for doctors, appointments, tests, etc and then of course after the tests you have to wait some more for results.
The day ended with Ben opening a package from one of the reps at Chris’ work. Ortho-Clinical-Diagnostics sent him some very cute toys, which he shared with Joseph and Amelia and they all went to bed exhausted.

Tuesday, March 16, 2004 3:02 PM CST

The launch of the new website.

Wednesday, March 10, 2004

(Day 0- Interim Maintenance)
Wow, what a day. Today is clinic day so Ben and I made our usual pilgrimage to Regina a trip that usually takes about 45 minutes. We checked the Internet: isolated flurries but good winter driving, so we headed off just before 9 am.
Shortly into the trip I realized we were in trouble as I couldn’t see anything (subtle hint I know) I couldn’t even see the road well enough to turn around. I kept going for a while following a big truck, but when he pulled over I thought I’d better follow.
And there we sat.
Ben in the backseat was fairly oblivious, I think he liked the idea of getting out of a clinic visit and avoiding the blood test and IV. I got reprimanded a few times for not paying attention to ‘Simon says’, (we tried 'I spy' but it was short lived as all we could see was snow!)
Anyway eventually the traffic started moving and we kept on going finally arriving at the clinic at 3pm! Poor Ben immediately had his blood test and then when that was OK had to have an IV put in for his Vincristine. Unfortunately his veins are still suffering from all the IVs he had as inpatient and it took 5 tries. As far as that goes we have an appointment next week to meet with the surgeon who will hopefully be putting his port in on Apr 7 as his arm should finally be healed by then.
At the end of the day we are home safe and sound, with just a few more gray hairs that I could do without.

Tuesday, March 9, 2004

We’ve had a busy couple of days at our house. Ben’s counts are good so we took the opportunity to invite the entire first grade class to our house. What a mad house! I think he was well and truly exhausted by the time they left. Later that day we took off to Regina again to stay overnight in the lodge as we had to report to admitting at 6:45 on Monday morning for dental surgery. It was a nice enough place to stay. Ben was impressed that you could help yourself in the kitchen, but as he had to take his 6MP he couldn’t eat anyway.
His dental extractions went really well. The poor tooth fairy is going broke! He was sore last night but today did excellent. We were all fairly nervous about how he’d manage so it’s so good that it’s over.

Wednesday, March 3, 2004

(Day 21-Consolidation)
This is the day we’ve anticipated for a while, today we found out which arm of the study Ben will be on. I actually felt let down when he got the standard arm. I’m torn between not wanting him to suffer more than he has to and the thought that the treatments that are harder on him will be the best at making sure it doesn’t come back.
He’s doing well in himself and more energetic than he’s been for a long time. We also had an appointment with the plastic surgeon who is pleased how his arm is healing and figures it will be completely healed in 2-3 weeks.

Wednesday, February 25, 2004

(Day 14- Consolidation)
Clinic Day- also school holidays so we made it into a family trip. His counts are really good
(that along with the fact he’s still got all his hair has us worrying about whether the chemo’s doing anything) He had an anesthetic for his intrathecal methotrexate which he tolerated well. He’s still having trouble getting around but hopefully that will improve now that he gets a break from Vincristine.

Friday February 13, 2004

When we arrived at the other hospital little did we know it would be 38 days until discharge. During that time Ben would endure: 20 blood tests, 3 transfusions, getting 7 IVs started, 3 lumbar punctures, 4 bone marrow aspirations, at least 100 oral medications and a whopping 197 IV medications. We would watch him gain 5 kgs (11 lbs.) on steroids as his every thought revolved around food, and most amazingly we would watch as a tiny scratch above his elbow grew to an ulcer of such a size that it threatened his arm.

It seems somewhat ironic that we were finally discharged on Friday the 13th!

Tuesday, January 13, 2004 07:30 AM

I’ve heard nighttime is the hardest
I agree.
My thoughts wander too much
without the distraction of light.
You’re pale today.
It’s probably the day of your
second transfusion.
We’ve told you about cancer
About good and bad cells.
You related it to Batman and Robin
Vs Penguin and the Joker.
You believe good will triumph
I so hope you’re right.
Blood today
First chemo tomorrow~
Batman and Robin need help.

Outside the city wakes
To start another day
People to work, kids to school
Fussing over nothings.

Friday, January 9, 2004

Ben had his first bone marrow aspiration done under conscious sedation. It was horrible. Luckily for Ben although he felt plenty during the procedure, he couldn’t remember it after. Unfortunately Chris and I remember it clearly. Afterwards in his bed Ben’s biggest concern was that the nurse had forgotten to give him a treat out of the treasure box.
As the afternoon went on he started to have pain in his foot and shin, it got worse until he was crying, begging us to rub it but getting no relief. When the hematologist came back we asked about the pain. “It’s the disease process, he’s got leukemia”
The rest of that night is a blur. We had a few doctors come in and tell us bits about the treatment and that it was the “best” cancer to get, and how they had made great advances in survival. But mostly they left us with our little boy, giving him regular Morphine to help with the pain, and planning to send us across town to another hospital in the morning.

My darling boy
My heart aches as I watch you sleep
So small, so pale
Leukemia
Today is the day you were diagnosed
TodayTuesday, January 13, 2004 07:30 AM

Friday, January 9, 2004

Christmas 2003

Sitting here thinking back, I can’t believe that Christmas was only a couple of months ago. We had a lovely Christmas, not just the usual frantic Christmas with three kids under 7, but lovely family time as we started our new life. Our family consists of Chris and Andrea, Ben (6), Joseph (5), and Amelia (3)
2003 was a hard year for us. We had emigrated from Australia, spent months living with my parents and then in a trailer, but in mid December we finally moved into our new home. I think we all took a collective deep sigh and I for one hoped for a very boring 2004.
We’d had concerns about Ben for a while. He seemed tired & pale, but considering the year we’d had we felt it was understandable. I remember discussing with Chris that if he didn’t pick up in the new year we’d get him checked out. But then on Boxing Day he developed a fever and tummy pain so Chris ended up taking him into emergency. The verdict was viral and we had to watch him, treat him with tylenol and advil and take him back if the fever didn’t settle. It didn’t, so on Dec 28 it was my turn to take him in.
This time they took blood, the first thing we were told was that he was dehydrated and needed to be admitted for IV fluids. I can’t remember when I first realized all his counts were low (and the significance of that). Through the night the pain continued, so much so they called the doctor in, and then in the morning we saw a surgeon in case it was his appendix. Repeat bloodwork that day showed his platelets dropping which resulted in him being transferred to Regina (65 kms) away.
Once there it was still thought he was dealing with a virus, then two days later with counts still falling but tummy pain settling the result of giardia came back so we were discharged with no need for follow-up. We actually had a problem with that and decided to check his bloods ourselves until the counts picked up (an option open to us as Chris works in a lab). On New Years Day they hit an all time low. Chris contacted the pediatrician in town who told us to send him a report every day until further notice.
On Monday Jan 7 they finally seemed to be rising, so Ben got a much-appreciated day without a blood test. Hindsight now tells me this was the calm before the storm. On Wednesday we decided to make an appointment to see the pediatrician, the counts had dropped again, and Ben seemed unwell.
While I was in with the Doctor the lab rang. I could tell they were talking about us. Next thing he wanted me to go to the phone, it was Chris. “There’s blasts in his blood” Unfortunately I knew what that could mean. I remember trying to catch my breath. I can remember the look on the doctors face. I can remember Ben watching me.
Somehow we made it back to Regina. There we met our new pediatrician who examined Ben and announced he was too healthy to have leukemia, that the lab had probably made a mistake. My heart clung to that as I thanked him, but after he left Chris reminded me it wasn’t a mistake, whatever it meant they were definitely there. It struck me how hard it must have been for him to be there in the lab, when the case they were discussing belonged to his son.
The next day was a long one first the lab came in for a cross match and then later the hematologist came in briefly and said they would do a bone marrow aspiration the next day and for my husband to be there too.

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