Wednesday, April 7, 2005 9:27 AM AEST

What an amazing weekend we all had at Camp Crystal! Phil's van was packed and we were ready to go by 8:30am on Friday. We figured it would take us a good 3 and a half hours for the trip to Aratula and even with a few toilet breaks(for Mum and Hannah of course!), we made it in time for lunch! Good timing I say!

There was just so much to see and do! Hannah found the horses very quickly and crammed in at least 4 rides before dark! Then of course, the baby animals were due for a feed and Hannah found her way to the beginning of every queue. Calen found many friends and went up to do archery. (And he got the furtherest target 3 times! How impressive is that?). Poor Phil was left to sort out the camp and our tent (Thanks to the RAAF, who lend us the tents and even set them up before the families arrive!). I managed to catch up with friends new and old. I don't know how many times I had to explain to people that Calen was thin from his last hospital visit, not because of a relapse (that I know of!).

By the time the sun started to go down, Chris and Pam began handing out our camp jumpers - one for everyone, and we became a sea of blue - made it difficult to find anyone in a hurry! But it also gave me a sense of unity that we really are all in this together. It was a lightbulb moment for me.

Friday night was Trivia night! And we had lights all night! (For those of us that were there last year....) Our group came second, not a bad effort! We figure, next year, we just have to find a couch potato sport fanatic to help with the sports questions and we'll maybe win! It was a joint effort from the kids and the adults and I think we should congratulate ourselves. Phil drew the short straw and was on night duty putting Hannah to bed early but he said he was sending us the answers telepathically but he's glad we didn't listen cause he had heaps of them wrong!

Saturday was craft, Hannah made 2 clay animals and painted a mask and a plaster figure. She also discovered pipe cleaners.....
Mum managed to finish a mosaic coaster but left the grouting to the wonderful Sharon! I even managed to bead a couple of bracelets for Hannah and myself. Calen made a great necklace. We tried to get Phil to go for an extreme 4wd up the hill but he insisted it wasn't his scene.... Too much adrenalin I fear.

Saturday night was the Yowie hunt for all the kids (big and small!) Hannah fell asleep early so I stayed to keep watch as the group made their way up the hill. There must have been a good 150 glowsticks and that was a pretty awesome sight! A great time was had by all (even those of us who just watched!) and it was followed up by a night of entertainment, singing and dancing - Thanks to more talented volunteers! I think most of us made to to bed soon after midnight. I still feel sorry for those volunteers needing to be up at 5am to start breakfast...... You really are troupers guys and girls!

Sunday involved face painting, Reece, the wonderful balloon man (amazing what he can do with a few balloons!) who became a pied piper to the throngs of kids! Finishing off all our work, and again, catching up with various families.

We headed home soon after lunch, full of good food and the kids armed with many more gifts and mementos. We really are so blessed to have these wonderful people around us. Please support Childhood Cancer Support if you can, they do so much to help our families and I don't know where we would be without them. Narelle and Bill, thank you so much from the bottom of our hearts for your hospitality and great times! To all the Scouts, RAAF, 4wders, CCS staff and volunteers (even the Telstra and Electricity guys!) for making our weekend, one we shall treasure for a lifetime!

Now back at school, Calen seems happy again. Just a visit to the RCH next Wednesday for Ultrasound, Xray and Dr Tim. Somehow, I'll need to find his ideas on Calen's latest hospital admittance too.

I promise I will print Calen's latest ideas of his journey soon (to those who have asked.) It is a little lengthy so I shall need some time to put it all in perspective for us all!

God willing, all is well for now.

Wednesday, March 30, 2005 1:35PM AEST

Easter has been very good to Calen. As he is not able to have chocolate or sugar, the Easter Bunny brought crafty things in eggs and an Easter Chicken that plays a tune. (Can be very irritating if played continually though......)

Hannah received oodles of chocolate eggs and a bunny plus more were discovered at her Dad's house..... She really is a lucky girl!

Yesterday we caught up with Leanne, Stacey, Sophie and Luke at the Enchanted Garden Party held at Childhood Cancer Support in Brisbane! (Have a great 4th birthday tomorrow Soph, and an even more wonderful party on the weekend! Sorry we won't be there!) Hannah was a reluctant fairy (her favourite fairy dress was at Dad's house and needed washing....)and Calen was.. well, he was Calen!

We enjoyed fairy bread, cupcakes, lollies, games and a treasure hunt for wish stones! Butterfly Belle made a visit and so did Captain Starlight for balloon twisting and face painting! (Thanks for driving us down Rod, made the trip quite bearable!)

We also caught up with the wonderful Lois (who has entertained us when she visits the hospital on clinic days as she volunteers with the Playscheme as well as CCS!) and other families staying at the units. Many are not able to come to Camp Crystal this weekend due to their treatment so we promised to have fun for them!

I have also been visiting a lot of other children's webpages. Wow, do I need to update my skills to tweak this page! Bear with me. I will also endeavour to change some of the photos up here (but I'm still rebuilding a computer after a recent crash.....).

The baby is moving around a lot now. We are now 19 weeks and Hannah is very excited about the prospect of a baby in the house. Calen figures it'll be ok.

So it's time to pack for our weekend away, we are looking forward to it. Some of these families we only see once a year at camp so it's pretty exciting. Wish us a safe trip to Aratula!

Thursday, March 24, 2005 10:06 PM AEST

Thanks to everyone for their thoughts and prayers, I'm sure it's all working.

By Monday morning, Calen was looking 100% on the previous week. We had been moved into a larger ward when the doctors decided his condition wasn't contagious. So the weekend was a flurry of surgical procedures on children with fractured and broken limbs as well as a young girl who's thumb was severed. All surgeries were successful, but Calen and I decided that it must have been a very dangerous week outside and we were glad he was safe. Any broken bones could mean disaster for Calen in the future, so we are grateful to this end.

Whilst I was engaged in my 18 wk ultrasound at the Xray clinic across the road from the hospital at 9am. Dr Harris did his ward round, deciding Calen was not to have an MRI to check his head as he had kept his food down since being put on the Renitadine (that's the closest I'll get to remembering the name of the drug!). Therefore, his reasoning was that Calen had suffered a case of gastritis, resulting from a gastrointestinal virus. So his stomach lining was inflamed and any form of food or liquid was irritating it until it was removed....

I made it to the hospital rather quickly after Calen sent his text message informing me of the doctors' words. Teena was sitting with him when I arrived. Calen, of course, was perched on his bed playing the Gamecube quite vigorously. Within half an hour, Calen was scheduled for an MRI to be carried out the following day, due to the backlog from the previous week. (Apparently, the MRI machine had been out of commission due to service repairs). I just couldn't leave without removing the last bit of doubt I had. That needed proof.

Calen's cannula had been in place for 7 days and this is highly unusual. Normally in the Childrens Hospital, these are changed every 4 days or so. This one seemed to keep running so it was left. The Rinitadine was being put through it 3 times a day (9am, 5pm and 1am) followed by a flush to clean it. Monday night, our nurse wanted to remove it to encourage Calen to take his medication orally. Not an easy task. Calen strongly pointed out that as he needed a cannula for the MRI contrast dye to be put through the following day, it would be silly to remove it. (Sometimes, he is just too smart for his own good.)

However, the IV fluids and dosages were ceased Monday night and Calen stubbornly refused every oral offering of the drug. I waited another day wondering if it would start again. It didn't.

The car was taken back to the panel beaters on Tuesday morning and I was taken back to the hospital with Hannah for the day by Phil. Teena was again there for support and Hannah loved leading her down to the playroom for some books to be read! Thanks a heap Teena, really took alot of pressure off me!

The MRI was carried out after lunch. I felt happy that Calen had indeed been able to lie still for the full 45 minute procedure after the Nambour Dr Tim's verbal doubts to me that he would without a GA.

By late Tuesday, the results were reported as normal. A huge relief to me, even though I was 85% it would be. All that was left was to gather Calen's belongings and find a way home, hoping our car would be satisfactorily finished this time!

At this point, Thursday, Calen is home and still a little on the weak side physically. He is sleeping a huge amount (not easy to do in a hospital) but his constitution is still strong as is his will. He returned to school yesterday, much to my surprise! He was welcome to stay home with Phil and Hannah for the day but decided he wanted to go back.

My antenatal appointment at the Royal Womens Hospital (part of the Royal Brisbane) was fairly straight forward and surprisingly exhausting for me. Maybe it's the hour and a half drive beforehand and on the way back? But I should only need 2 more of these visits before the baby's arrival so I'm sure I'll handle it.

Tomorrow is Good Friday and a quiet day for us. As there is no trading on this day, it's a family day for all. And to remember the reason for it all. Miracles do happen, we just have to wait and have faith. I'm still praying. Happy Easter to all, may you find your own miracles.

Saturday, March 19, 2005 10:36 PM AEST

Well, Calen is still in Nambour General Hospital tonight. Although for the first time in 6 days, he is argumentative and cheeky to all. This is a stark improvement to the previous few days. He is finally keeping down food he is ingesting (and we all know how much Calen loves eating!) due to Renetalin 3 times daily and is keeping hydrated due to a maintenance IV drip via his canula (mainly to give him the Renetalin as he is refusing to swallow it!). However, we are hoping this will be the start of his journey home again.

I had a small emotional tantrum yesterday (well, I am 18 wks pregnant, tired and frustrated with it all!) with the head Doctor on the ward when I found Calen had lost nearly a kilo in weight since his admittance on Monday night. That's 250g a day roughly. Then this morning he was showing another dramatic loss. And he was weighed on the same scales each time. It is heartbreaking to see how thin he is. I took him to the kiosk for a walk today (Yay! He was allowed out of his room for the first time in days.)and the weight loss is extremely noticeable. Even Phil commented on it. He is currently 23 kilos and I'm praying that's going to go back on pretty quickly. But we still need an answer to all this.

Dr Harris says that if I'm still upset on Monday at 9am, Calen will be sent to Brisbane again. If not, he has advised a head MRI be done prior to any further decisions being made. It's not a path I wish to consider but now I can't even think of leaving without knowing that it is clear. I still feel like we are back at square one, only now, my Calen is back, if somewhat detained at the local hospital.

Miss Hannah has been her Dad's constant companion this week as I have been at Calen's bedside from around 9:30am to 8:30pm each day. Tonight has been her first night with Mum for 4 nights. Rod has brought me dinner and lunch a few times during the week (Thanks Rod you're a legend!). Phil has dropped by with Hannah to see Calen and tonight he brought Simon and Cale with him. So, 3 boys sat and played the gamecube on the Starlight Entertainment Unit. I don't know where we'd have been without it this week!

The car is back from the panel beaters but causing other issues I know will have to be dealt with before too long. Just what I need, more time without it! I have my ultrasound on Monday and my Antenatal in Brisbane on Wednesday. I don't know when I'll fit it in! Camp Crystal on April 1,2 &3 and Calen's next appointment is on Wed April 6! How do we become so dependant on these things?

But somehow, it'll all come out in the wash and soon this will all be just a horrible memory of a bad week in our long journey. Sooner rather than later, I'm counting on it!

Tuesday, March 15, 2005 9:52 PM AEST

Life has been keeping us busy again.

Hannah and I were lucky enough to be able to attend the Camp Quality Mum and Daughters weekend at Couran Cove again on Feb 18. As a family had dropped out at the last moment we were invited only on the Wednesday. No worries, I can arrange all that and be down there in time for Friday 3:30pm to catch the ferry (being from the Gold Coast mind you!). Sure, not a problem, except lunch with 4 friends at a cafe in Maroochydore that had been arranged a week earlier! We were cutting it fine, but we did it! Even managing to drop in to the Bradleys' house in Oxenford to drop off Calen's laptop for Tim to try and fix and pick up Rachel and Georgia to bring them along too!

Again, it was a weekend of indulgence, companionship, relaxation and fun. Lazing by the pools, riding aimlessly around the island resort. Eating fabulous food, experiencing great massages and chatting with the mums until late into the night....

By Sunday, it had all caught up with me and I guess I was a little pale with feeling off. A mixture of too much sun and general morning sickness I guess. It was an effort but we arrived home safely. Thanks to all who were so worried!

So since that, little had happened. Until Friday, when Calen announced his stomach was sore. No major cause for concern at first. However by Sunday, he had not been able to keep much in the way of food down and was extremely irritable and listless. I called a home visit doctor who advised fluids for 24 hours and phenergan. Somehow I didn't feel happy with that. By yesterday, Calen had swallowed a few glasses of water and hydralite iceblocks but was still complaining of fatigue and stomach pain. So off to the GP, Geoff Norman, where he was again offered an iceblock and Panadol for his cramping. Unfortunately, all of that came back up before we could leave there and Dr Norman advised a visit to Nambour General so he could be rehydrated via IV infusion. 5 hours later (nearly 11pm) I made it home without Calen. Funnily enough, he didn't argue or struggle with the doctor when the canula was inserted, so this is a boy who is not feeling well!
(And of course it was a fitting end to a birthday for Mum too!)

Today, I made to the hospital with Phil and Hannah just before 10am to catch the Doctors' round. Calen has to have a chest Xray and an ultrasound of his abdomen. I guess we're looking for a bowel adhesion or blockage. Hoping of course, that it is just a bout of gastro. Only Calen hasn't had a fever with all this. And then there was a mention of another CT. Trying not to link all this into his condition, but that's what others seem to be asking.

Upon leaving tonight at 7pm, Calen was still hooked to the IV running at 65 ml an hour. He seems to be ok with the bladder output but still weak and generally unresponsive. He did manage to eat a serve of vegies before I left. I just hope he can keep it down tonight. And that things will all be clearer in the morning.......... Praying all is well.

Saturday, February 12, 2005 3:11PM AEST

Well, it's the end of the 3rd week of the school term already.

Calen has settled (much to my surprise) into his new year 6 class with little trouble and much enthusiasm. Finally he is completing schoolwork and smiling when I pick him up each afternoon. I sometimes wonder if this is the same child we had all the problems with? He even likes his teacher, Mr Moran (as most of the mums told me he probably would.). Homework is done without too much hassle and he is usually ready each morning by 8.

Miss Hannah on the other hand, has resisted the change into Jessica's room with as much of her determination as she can. It makes no difference that Anaya is with her or that Sanaam and Mikaela are in Tracy's room next door. This is also an unexpected reaction. I know she will eventually like having Jessica (she was Calen's teacher for a year or so!) but she is still set on not doing so.

The pregnancy is progressing well, although the jury's out on why I'm so big from the start. I figure it's the 3rd child so it has to be a bit bigger than the others were. And no, we are not thinking more than 1! I finally had my blood test done yesterday (it only took me 5 weeks to get there!).

Phil is still estatic - as the impending arrival of any of his children have made him.

Tomorrow is the International Childhood Cancer Day in Gumdale and another chance to catch up with a few of our friends. Something else to look forward to.

For now, life almost seems a little too normal. But I will never forget just how lucky we have been. I know things are not over for quite a while and they most likely will not be how I'd wish them to be. But we have had it so much easier than most of the families I feel. We have been able to come home for most of our time. Not many seem to have that luxury, regardless of the outcome. We have been able to "keep up" our lives and home and just drop in to the hospital at times when required. For that, I will always be eternally grateful.

Let's just see how each day comes from now on - and try and face each with as much courage as we can muster (which is not much at times!).

Monday, January 24, 2005 10:02PM AEST

It has felt like forever at times and then that it was only yesterday Calen was born. But on January 11, my big boy turned 10! With a cheeky grin, he was eager to hit the slides at Wet n Wild on the Gold Coast for his big day, with a few of his friends (thanks a huge bunch to Camp Quality for organising this magical treat!).

The day was a little on the cool side for a summer one but it sure didn't stop the kids having a great day. I don't think they missed any of the rides. They headed out with their "buddies" we paired them off to keep an eye on each other and this worked well! As long as your buddy wants to do what you do.......... Minor hiccup.

I was left to float around the Calypso Beach for the day with Miss Hannah at times, who is quite deft at the tubes mind you. Not an easy task trying to hold a 3yo who wanted to climb across as many tubes as she could on each circuit. Mum's questions of "Can we get out now?" were always met with a clear "Not yet!" or "Bit more, Bit more," responses. Phil, Gaz, Christopher, Emily, Mary, Ryan, Isaac, Rach and Ebony helped to make the day a blast. We hope you had as much fun as we did guys!!!

And so Calen just had to bring home a memento of his wonderful day... After refusing to hand over his electronic game earlier in the day (funny water and electronics don't seem to go together!), he decided to make a run for it with Chris in hot pursuit. Too bad he kept checking over his shoulder and didn't see the pole before he hit it - with his forehead and nose! So a little blood and some nice bruising later, he'd forgotten all about it! Just the rest of us could see the lump on his brow! But even that AND the 2 hour drive home couldn't dampen our spirits!

As the school holidays have wound up, we have had a few days at home covering the school books and preparing for year 6 at Nambour State School. Everything is done for now, just the anticipation of a new year I think.

Hannah attended her first day of Kindy today and seemed quite dejected at the prospect at 7:30am. She firmly told me that she didn't want to go. A new teacher was not what she wanted today. But once we had dropped her off and she saw Kristine on playground duty, all was forgotten. And the idea of Jessica for the day didn't seem so bad. Mum managed to get a small kiss on the cheek before Hannah disappeared to the swings...

Calen's and my day involved a great deal more, we arrived in Brisbane at 9:15am. Emla cream applied to hands. Lindy drove us up to the hospital (you're a lifesaver Lindy! Thankyou!) and oral contrast was started at just after 9:30am. By 10:30am oral contrast was finished and IV was to be inserted. 3 nurses, 1 doctor and a OT took 10-15 mins to catch him and put the canula in. Not an easy task. I nearly fainted but managed to escape the treatment room for a break. By 11am we were at Medical Imaging for his CT scan (minus 1 Mum due to her being pregnant). By 11:30am we were done and then just waiting for our 2:30pm consult with Dr Tim for the results.

By 3:30pm Dr Tim arrived with results in hand. All clear. No indicators of tumours. Ok. (Pardon the cynicism here, been burnt way too many times before!) The plan is more checks in 3 months. Give me 5 years of this result and I will start to party! But no getting carried away for me now. My feet are staying firmly on the ground.

We managed to catch up with a few of the families we have met throughout our stays. Have a chat and laugh (we do have many!) and promise to catch up again soon. Take care Glen, Lyn & Bronwyn. We will be around.

A quick catch up with Merryl (love you heaps!) and an hour or so drive home. So we wander in around 7:30pm and try to make sense of it all. Again.

So I have deemed that Calen will attend his first school day on Thursday, cause Mum can't be bothered to get it all done for tomorrow, and then have Wednesday off due to our patriotic Australia Day Holiday! Because then I get to sleep in 2 more times............

Sunday, January 9, 2005 10:27PM AEST

Almost as soon as we were home, I received notification for the date of the second surgery. Less than a month after the last one. I decided to sit on that one for a while. Then came the stories on TV.

Dr John Holt in Perth was having some success with cancers others had given up on. Due to a friend's association with a particular journalist, Calen's details were forwarded on to Dr Holt. I did try calling his surgery when requested but found it extremely conjested (well, what would you expect if people are offered this kind of hope?). Eventually, I had to think long and hard about this kind of treatment and where we were already up to now. I even raised it at our consultation with Dr Tim a few weeks after the surgery, somehow I knew I had to finish one treatment before starting another. And anyway, the oncologists hadn't given up YET!

So with the delay, the surgery date was adjusted to October 25 and again, we just had to wait.

As usual, we squeezed in a Family Camp with Camp Quality at Koonjewarre in the Gold Coast Hinterland. It just happened to be in the middle of a few bush fires but those of us who made the effort, enjoyed our time there. Even the power loss was deemed character building - for Dave the chef, at least! Calen, Hannah and I all made great candles on Sunday and we came home just a little refreshed. (Hannah managed to get Jasmine to give her a lovely foot massage too!)

Just a week before we were due for surgery, Calen's school rang to tell me he was not being very cooperative again. I've tried numerous times to sort out the issues he seems to have, but the solution offered at this point was to remove him from the school until his surgery was completed. Suspension, I call it.

Again, a day before the surgery we set off to Brisbane - no chance of any quick followup CTs - it was a Sunday! And a very gloomy and wet one at that! I had a quick thought to the likelihood of a hail storm (the car was outside!) but figured, what the hey, not much I can do here. Another night at Leonard Lodge (it's our second home now) and an early morning fast until the surgery.

Like clockwork, Calen bided his time during admittance but by the time we reached the waiting ward, he was timing how to get up to his ward already. This time it took about half an hour, a record on his part. Then we were back in Surf ward, his bed in the same room. There we met Jordan, in the next bed and his Dad, Martin. We learnt alot about each of the kids over the next few days. I found it disconcerting that our surgeon hadn't seen us prior to this surgery in anyway, nor discussed the operation at length. Afterall, this was the tumour he wasn't so confident about. I had to spend some time just praying this would all work out.

Finally at just after 4pm we took Calen to the theatre. I had stressed to the nurses during his admittance as to the requirement of his morphine pump, and I knew it was correctly marked. Simple enough! The surgery was successful and I found my heart in my mouth. It was all done keyhole, not open. My relief was quite overwhelming. Just an hour and a half after leaving him there, I returned with one of the nurses to collect him, and found he had been fitted with the wrong pump. Those of you who know Calen, realise that whilst he is on morphine, he has no concept of the outside world, so a self administering pump is out of the question! I mention this point quite loudly on two occasions and was given no reason for this. We even returned to the ward with the correct pump at the foot of his bed! Even after asking for it to be changed back on the ward, it remained. I left at 8:30pm explaining to the nurse on duty that I was not to be disturbed as I knew how the night would pan out.

I was awoken at 11pm by a phone call from his night nurse that Calen was in extreme agony but refusing to administer his morphine or take any panadol. As the nursing staff are not allowed to do this, he must do it himself, it would not be done. I told her that my solution was to change the pump, other than that, she'd have to wing it!

Back in the ward, early morning on October 26, I found a very uncomfortable boy in a very bad mood. He had endured as much pain as he could handle and was quite rigid. By 10am, the pain consultant decided the pump would be changed as it was on his chart but another nights stay was required. Not happy! My anger subsided enough to know it was needed but this was not fair.

Finally on October 27, Wednesday we were discharged and allowed back to the Lodge. It is tiring walking the distance between the hospital and the Lodge daily and probably moreso after lung surgery. Calen and I spent the night there and packed up to leave the next morning. Even though Hannah had visited with Phil on the Tuesday night, we were both looking forward to having her with us and just being home again.

By the end of the week, I knew what had to done with Calen's schooling and set about organising it all. On November 2, we attended Nambour State Primary School for a meeting, where he was duly enrolled. Only his grade placing had to be completed. As a Montessori student, Calen had no formal testing to show his competency, but as we were already undergoing behavioural, learning style and IQ assessments with the University of Qld in Chermside (Thanks Childhood Cancer Support Inc) due to prior discussions with his previous principal, these would be used for this purpose.

By the close of the school year, it was apparent that Calen would be attending Nambour Primary and starting year 6 in the New Year. He had been put up a grade due to his results. (Age wise, he should be in year 5). Thanks a heap to the staff at Nambour for making the transition to public school so easy (Even if it took Calen a few days to get over it!).

Yet again, our year ended on a high note. Hannah's 3rd birthday with Dad at Cotton Tree, was attended by many friends, her brothers and their friends. A Barbie cake went down well (Black Forest of course!) as well as sushi and nibblies. She was spoiled with plenty of girly presents and attention from all.

And as is our usual, it was back to The Woodford Folk Festival to finish the year in style. Calen travelled to Comboyne with his cousin Brenton and Grandad, Col to have Christmas with their Great Aunty Pam, Uncle Ron and family and friends. Hannah stayed with me but Phil picked her up at 10am and I packed and headed up to our camp to be ready for work the next morning.

Just to complete our year - we discovered that we are expecting another edition to the family in the New Year! Once we get past the morning sickness, I'll let you know how we're going! A blessing yet again, amongst the turmoil.

Friday, December 17, 2004 9:31 AEST

Duly the following Friday, Calen and I attended an appointment with surgeon, Dr Peter Borzi at the Royal Childrens Hospital in Brisbane. It was all very matter-of-fact and the discussion only extended to the easiest of the tumours to remove. I felt like I had given away my control again.

A follow up visit with Dr Tim and Professor Jennifer Batch (endocrinology - the hormone team!) to see how Calen has been over the last year, was conducted the following week. Then we just had to wait for notification from the hospital for a surgery date..........

On May 30th we drove to the Gold Coast to attend the launch of "Go Sushi"'s support for Camp Quality. We were fed a lot of sushi (yum) and played sports with some of the franchise owners and their families. It was a wonderful day for the kids (not to mention us parents!) and we even met the owners of our local store (as local as Maroochydore is!), Roz and Luigi. Now there are a couple that Calen will never forget! Thanks a heap to all the team at "Go Sushi" for all your assistance, we are eternally grateful.

Sometimes I wonder just where all my time goes. I feel like I'm doing nothing and getting nowhere but when I look back, I realise I am achieving something - even if it doesn't seem like it at the time!

Calen's first surgery is on August 2 and Dr Tim needs a few updated tests before that can be done (now why didn't I predict that???????). We arrive at the hospital the day before the surgery to get them done. I may be stubborn but I'm not silly! But before we make it over to the hospital, Jenny (Lodge Manager!) asks if she can borrow Calen for a photo shoot. Hmmm, ok with me, but better check with the celeb again (we all know how moody Celebs get, don't we?) After what seem like an age, the photographer managed to catch the better side of Calen and Frances Whiting (journalist from the Courier Mail Newspaper) and her baby son, Max much to Calen's chagrin!
The photo would feature on the front of a brochure supporting the Cressbrook Society who founded Leonard Lodge and would be sent out to businesses all over Queensland. Chalk another one up to Calen and his cheeky grin.
We catch up with Tim quickly (where I decided to give him a small piece of my mind about the hiccup)after the CT scan and ultrasound and then back to Leonard Lodge for a quiet night before the morning's fast.

Surgery was successful and Calen was back in the ward within 3 hours of leaving, he had requested an early move to his ward bed instead of waiting with the other surgery admittances (there seems to be a pattern here) as he figured he'd be last and at least he could watch tv in peace there...... When I left his ward around 8:30pm all was well.

The next morning he was up and bouncing, quite grumpy (darn morphine again) but happy enough with a few more scars to add to his collection.

We were discharged and home by Wednesday evening. Not a good idea, I figured in hindsight, we were then some 100ks or so away from the hospital if he should show any signs of complications. But of course, he didn't and was mobile as soon as he realised there weren't nurses around to get everything FOR him!

Well, that was one major hurdle over with. Another to go in the next month or so.

Thursday, December 2, 2004 1:33PM AEST

Yes, I have finally realised how to adjust the dates! Yay!

Calen's 9th birthday arrived with little fanfare and it was again a quiet one. Call me selfish, but I really wanted to keep him to myself more than ever. We celebrated by turning his room into a Harry Potter Haven and having sushi! Somewhere in this turmoil, I decide to teach myself and the kids to make their favourite food and we are getting there slowly! Grandad sent down a mobile phone for his use and whilst Calen checked it out, I secretly wondered how we'd manage it, but I needn't have bothered. He has made very few phone calls and just a few more SMSs over the past months - in fact, I will probably only need to add credit on his 10th birthday!

Hannah and I were wonderfully fortunate to spend a weekend from Feb 6th at the amazing Couran Cove Resort on Stradbroke Island with a group of others from Camp Quality. A Mothers and Daughters weekend! A weekend of chatting, eating, drinking (not that much guys, but that wine can sure go to your head quickly!), swimming in the resort pool, riding our hire bikes around the island and chatting until late (or is that early, Sally and Leanne?)all to our hearts content. We did have one appointment each to keep though..... with the massage therapists. What a life! 2 and a half days of this and we have to go back. Hannah won over a few more hearts and slept the 2 hour drive home from the Gold Coast. I still can't believe I drove all the way there and back on my own!

My New Years Resolution for 2004 was to ensure I took Calen to Sydney for a second opinion and some guidance, before the middle of the year.
After much sorting, Dr Tim referred us to Dr Luciano Dalla Pozza at the Childrens Hospital in Westmead and I spoke to him at length on the phone. It then took a few months to syncronise dates that suited and then we were off.
We managed to find accomodation at the wonderful Ronald McDonald House just behind the hospital, where our very colourful Camp Quality shirts and Jumpers caused much attention and approval from staff and parents alike. Seems the ones they had are quite boring! Thank you Camp Quality SE Queensland for such cheerful clothing!
Calen's godfather, Uncle Andrew even managed a visit from his busy schedule on Channel 7s All Saints, where he is a medical advisor. So we even got to wish him a happy birthday for Friday! Calen was wondering how much he could bribe the nurses in Brisbane with his new signed picture of Georgie Parker............
Our appointment was on Thursday, May 13 with Dr Luciano at 2, so that gave Calen and I a chance to explore. We found Parramatta Westfield (little hard to miss!) and even ventured on the public transport system, back to Luna Park for a day (now that is a challenge, train, train, bus, ferry!) and we even made it back in time for tea! Calen's sushi desires were delighted with the range available and I struggled to find organic produce and groceries in otherwise, overstocked stores!
We met many families from all over NSW and shared our stories and dreams. There were even a family from Singapore whose daughter has leukemia.
Dr Luc was just as wonderful in person and his affable manner meant I felt a huge relief meeting him. I spent nearly 2 hours with him, listening to his experiences (he has treated 2 previous cases of this illness) and how he felt our journey would pan out. Unfortunately, no children worldwide (there are currently 22, and Calen is the only one in Australia!) have ever survived this one. The average has been 5 years since diagnosis. We discussed the chemo option and surgery. His belief was that Calen's life was limited by the current 2 tumours (he agreed with Dr Tim that there were 2!) although the removal would only delay the inevitable. His detailed explanations and understanding ear were invaluable in my decisions from then on. We also discussed the genetics of the P53 gene and he stressed I should also be tested.
Whilst I didn't get the answer I would have like, I did get one that I needed.

We returned home on May 15 and Linda H drove us home from the airport.
True to my word, I rang the hospital on Monday and requested the surgery dates be organised after a meeting with Dr Peter Borzi, the surgeon. I may feel slightly dejected, but definitely not defeated yet!

Sunday, October 31, 2004 6:39 AM CST

Over the next few months leading up to Christmas 2003, we yet again experience many highs and lows.
Bill Chambers concert at the Nambour RSL was a great night for all who attended, we were blessed wth the RSL's amazing support for our cause. And of course, we cannot mention the night without sending a huge "Thank you, we love you!" to Juanita, Heather, Lance and Steven (for letting us borrow your wives!)
Poor Bill's favourite guitar wasn't working so he had to borrow one. But that didn't stop his performance being wonderful. We are eternally grateful to Bill, Lee Ann Rose and Hannah for their generosity and time. Calen and I even got to take Bill and Lee Ann out for a day after the concert and just had a fantastic time. But all too soon, it was time for them to leave. Calen thoroughly enjoyed his time with them and I think he wanted to go too.
Also from the ABC radio interview with Mary Lou and Bill, a gentleman rang and pledged he would raise money for us by walking from Woombye to Coolum (some 36kms!). I was totally blown away by Kev Blacklaw's selfless act and even more so when Juanita informed me he had raised nearly $7000 prior to the walk! I realise now why I no longer take anything in our life for granted. We are so lucky.
People are constantly asking me what I intend to do about the chemo but I haven't the strength to argue my case.
Calen has been seeing a naturopath in the Gold Coast and his therapy is ongoing. I feel it is a shame that other families aren't able to make these choices like we are. But there does have to be a limit too. For now, I just wish to enjoy Calen as he is - he looks and acts for all to see, like a perfectly healthy child and that's how I want the world to see him.
Due to the newspaper articles about us, we are often approached when out by people who recognise us. I just cannot get used to it. I wonder how Mary Nolan handles it all with such ease - or is she just as freaked by all as I am?
Another visit to the Royal Children's Hospital for tests is fairly uneventful, his tumours have grown little. Tim was curious about the alternative angle we are taking but I assured him I would be sensible about the treatment - I'm hardly going to let anyone do anything I don't feel is ok for my child. Dr Tim expressed his concerns about my decisions but I was steady in my resolve. I just can't bear to do this to Calen, he trusts me with his life and I feel I have to do the best I believe I can and this is it.
In October, I finally achieved something else I am proud of - we finally have a newer and bigger car. It was an effort but we got by with a lot of help and support from those close to us (Thanks Gaz and Mum!). So I now feel safe driving to Brisbane and the Gold Coast.
The Christmas season was spent catching up with many families we have met at the Christmas Parties for Camp Quality and Childhood Cancer Support. These people lift our spirits when we can't seem to find them ourselves. Their gifts mean more than I could ever put words too.
We travelled up to Cairns (I wanted to drive but yet again, wonderful Bill Chambers offered our Christmas gift - our airfare! You are an amazing man Bill.)to spend some time with Mum and Gordo at their new home in Kuranda. Quite a place guys - great yard Gordo! We even had a few hours with my dad and Brenton stayed with us too. As usual, our time there was one we will take a long time to forget.
Hannah's birthday was spent sailing on her Dad's small catarmaran around Cotton Tree in Maroochydore with a picnic in the park. Mum was home a little ill but all goes well that ends well. My little girl turning 2 is a big milestone in our journey.
Finally our year ended with a quiet Christmas day at home and our trek to the Woodford Folk Festival. Calen had a great time wandering around with his Grandad (thanks Dad!).
I think he felt very important showing his grandfather all the foods he could eat at the various outlets (why are we not surprised he was looking at food!). I worked in the Admin dept again but still found time to source some great information on healing and cancer from the many great speakers there. Our time at Woodford is always an uplifting time. And it is always an interesting time to ponder the year that was and wonder what the new one shall bring - fingers crossed for a positive one.

Monday, September 13, 2004 5:59 AM CDT

Somehow in all this, we still find a semblance of our previous family life, touched with this strange world we now also have one foot in.
In May 2003, Kasey Chambers played the Novatel Twin Waters in a concert for the Leukaemia Foundation entrant, Renee Ross. Bill offered me tickets for the kids and I but it didn't seem right for us to be there - I'd feel better if I'd paid for them. So we just caught up with them before the concert and the following morning when I drove Bill to the airport in Maroochydore. Kasey gave Calen a gift - a Harry Potter alarm clock. Calen is overjoyed. Not that he expected it but that Kasey had thought of him.
In the morning, Hannah warmed to Kasey straight away, climbing into her lap and snuggling in. I thought it was sweet. Calen took a few photos on our camera and I he did well!
Plus during all this, I finally was honoured to meet Shaianne and Sifu Crockett, who I had spoken to on the phone numerous times. These are 2 people I bow my head to - they have a purpose with their lives that I envy. It seems so clear cut sometimes and I almost wish mine was. I also wished I could have helped them more on their own quest, to help others who have to face a situation similar to this.
Juanita and Heather were in full swing planning a concert for Calen in July at the Nambour RSL. It was a whirlwind from our point of view. I faced an ABC radio interview and a few more media shoots before the day. I don't do media well....
And yet I still had to face Dr Tim at the RCH again. He had finally proposed the Chemo option. A closed trial based in St Judes Research Hospital in Memphis, Tennesee. In the US... a world away again.
I told him I had to think about it and read the proposal in my own time - by the time we returned, I knew it by heart.... Every inch of it. Only, I thought Calen was a Stage II.... Dr Tim informed me that he was, in fact a Stage IV, the final stage of this cancer. That knocked me for 6 but I managed to compose myself enough to point out my objections to the therapy. How can he ask me to inject toxic substances into my child's veins and feed some orally to "kill" my son's cancer cells (and normal cells!) to within an inch of his life? Then let him regain some health in the next 3 weeks before hitting it again? And we were to do this over 8 months?
That is exactly how I felt and what his words were saying to me. NO. NO. No.
As a closed trial there are no results or ideas as to how many children started this trial, how many are still alive and the general life quality they have experienced. Calen is so lively right now, and there are no promises in this treatment. I can't possibly choose that path, now or later. I think Dr Tim knew that and so now, Calen is my responsiblity and that weighs heavily on my shoulders as I drive home with Linda. I can't give up yet, not on my own child. We have too much left to fight for.

Tuesday, August 31, 2004 7:37 PM CDT

Finally for a couple of months, Calen had been clear of any tumours and I started to feel like it would be ok. Then upon returning to the hospital in the New Year (March 2003), I knew something was wrong.
For one, Dr Tim took our file to the consulting room before calling us - he doesn't do that unless he has to check reports from diagnostics. My heart was in my mouth and I was saying aloud "No, not now - don't do this Tim," As if I thought he could do something about it.
The news was that there were another 2 spots - one in each lung. Dr Tim sat back and said they were too small to find at that point during surgery and they needed to grow a little.... Sorry? I thought the idea was to stop them growing.....
Back at home it took a few hours to sink in that we were back on the merry-go-round again. I was crushed but Calen just went on being Calen.
In November, 2002 I started Calen on some nutritional therapy (an alternative medicine but I call it complimentary) and he has been ok. Only the costs of finding a naturopath to oversee the treatment stops me from feeling confident we can do this. However, just as I was beginning to despair, Juanita and Heather offered to help raise the money to keep it all going. I was totally stunned that they would do that for us, but I am forever grateful for their strength and support. I guess they will never know just how much they have done and achieved along with Bill Chambers to restore our faith and give us hope. I could never put it in words the gravity of it all, or maybe they do know.
Calen's birthday was on Jan 11, we just had a quiet day , lunch at Sizzler and time to just appreciate that he is here and I know he gets that one.

Wednesday, August 25, 2004 6:11 AM CDT

Calen flew to Cairns on December 23, 2002 to stay at his Nonna's for 9 days. I knew he'd be spoilt rotten and having a great time anyway. It was just the longest time I'd ever been away from him and it was certainly strange not to have him home for Christmas Day and see him open his presents. Hannah and I had a quiet day together. Just how I needed it - I wasn't much company at that point. Hannah and I went to the Woodford Folk Festival on Boxing Day and camped near Phil in his van. I spent my time at work (admin - where I answer the phone enquiries coming in) and at a few rare shows I wanted to catch but it was hard missing Calen.
It all came crashing back to earth on January 2, 2003. Calen flew in on New Years Day, so Gaz picked him up. I drove down with Hannah to collect him and was relieved to see him again. Bill Chambers flew in to Brisbane and drove up that night and stayed here. On January 2, we met Phil at a servo on the way to Brisbane with Bill, so he could take Hannah back up to the festival site while we were away. She loved the doll he gave her and Calen was stoked with a Harry Potter doll that Kasey sent him for Christmas!
Our appointments for the day included a bone scan, CT and blood tests. Bill wanted to spend a day and experience what we go through. I couldn't believe I was walking around our hospital with him there. His dedication to Calen is huge and I will always be grateful. He even held a concert to raise some money for Calen at Petrie in Brisbane on November 29th, the night his grandson, Eden was born. I feel so priviledged to know him. At the hospital I just introduced him to the nurses as Bill. One of the Banskia (oncology ward) nurses came in singing "Ding Dong, the witch is dead" over and over. I asked her what was that about and she said it had been stuck in her head all morning and could I give her another one to get rid of it. I suggested Kasey's "Not Pretty Enough" and she said she didn't like that song at all! Bill smiled at that.
It was a long day with all the trips back and forward. Injections have to be done a couple of hours before tests and other tests are done in between, so we trek over to Nuclear Medicine at the Women's Hospital Building and then back to the Childrens for his canular, contrast and CT, then back to Nuclear again for an hour and a half and back again to have the canular removed. I figure we do some kilometres around there, I could set up an exercise regime easy.
After that we arrived home rather late and Bill had to fly back to Sydney that night. It was quite a marathon, and it just left me to face Dr Tim the following week for the results.

Tuesday, August 24, 2004 8:16 AM CDT

October 2002 Calen gets to meet his favourite singer, Kasey Chambers backstage after her Nambour concert. My girlfriend, Mel organised it all including 4 tickets to the night and I can't believe her generousity and tenacity to do this for us. I feel quite humble knowing I have friends like this. We have lost a few along the way who don't understand and don't want to even try. I don't expect everyone to understand, just be a friend.
We also met someone else very special, Kasey's Dad, Bill. I explained to him that Calen was ill and he gave me his mobile number saying to call him, he didn't know how he could help, but he could listen. Again I'm stunned at this offer. It takes me until the ARIAs to call him. Calen wanted me to tell him Kasey would win tonight. I told Bill that and he said he'd take Calen's photo on stage there with him. It felt surreal watching them playing up there. But Calen was right, Kasey won - Country Album, female singer and Best Album of the year.
By November, Bill had flown us down to Sydney to spend a weekend with him and to take Calen to a naturopath he had been told about in the Blue Mountains. While we didn't get a favourable outlook from this exercise, I just know we will find a way to keep Calen happy for a long time, just don't know how right now.

Christmas 2002 was really difficult. I had this horrible feeling of dread as it approached. The anniversary of our ambulance trip to Brisbane was quite sobering. I had a quiet day with Hannah and Calen went to school for his last day of the year. At least it was only a half day so we had some time together.
Phil organised Hannah's first birthday party at Cotton Tree Park with plenty of her cousins, aunts, uncles, grandparents and friends. She enjoyed all the attention immensely. As I sit back and look at her trying to walk, I realise just how much we have all been through in the past 12 months and also how much we may still have left.
We return to the hospital every month for CT scans and Calen has to have a second bone scan in the New Year, to see if the cancer has progressed there. It's a bit like having a dark cloud hanging over the future. I can't plan too far ahead anymore. Just getting things done for the current day is a challenge. And I couldn't have done it without the help of Linda, our wonderful social worker who has to pick up the pieces when I lose my focus even just for a little while, as well as the organisations who make it possible for all this help. The Malcom Sargeant Fund who pay Linda's wages, The Childrens Leukaemia and Cancer Support team who have brought groceries to the hospital during our stays because I don't have the funds and supplied someone to listen to me and give me another view of my situation. The Queensland Cancer Fund, who paid for the gearbox of my car to be fixed so I could drive safely to the hospital, Camp Quality for a million smiles and a few relaxing camps and chances to make new friends. These are just a few of those who have made our year bearable. Thank you all and Merry Christmas.

Sunday, August 22, 2004 8:11 AM CDT

Just a month after his last surgery, we were feeling very positive. Surely he would be able to have a break now, and no more hospitals in the foreseeable future.
After another CT scan, Dr Tim tells us they have found another nodule on Calen's right kidney. I don't know what to do or say. I wanted it to be alright, but it isn't and I can't change it.
Calen says he didn't do it on purpose, I know that. Linda and I leave the hospital with Calen feeling very dejected. What does this mean to all our hopes?
Surgery is done on August 15th, 2002, to remove his right kidney along with the nodule. I wonder if I'd made the right choice again. Dr Ong and Dr Tim tell me I did. The tumour was too close to the kidney and both needed to come out.
We missed the Ekka too. Well, we can see it from the ward but we don't get to go. Calen's too ill the day they take the kids over.
It's the first time I've been down here on my own with both the kids. Phil is working, Linda is sick and Calen worries for her. It's quite a juggle and exhausting arriving back at the Lodge after a day in the hospital. Jenny (Leonard Lodge Manager) says her daughter Kasey can help out with Hannah. At first I'm reluctant to leave her there, she's nearly 9 months. If she needs me I'm only at the hospital and she can call me in the ward. That gives me a few hours of Calen time. I am sincerely grateful to them. Sometimes it's difficult to see the kindness of people in all this fog, but I try to make an effort so I don't forget the things or people that made it bearable.
We meet so many others during our stay, from home and other places further away. My heart aches for each and every one, and some just find their way into your hearts for good. Rachel and Carl and their baby daughter, Caitlyn who has leukaemia, Cheryl, Rhune and Jake, who has a brain tumour. These people know some of the heartache we know, and we know only some of theirs but it's a bond beyond all this. I think we all know it subconsciously.
I take Calen to the movies on Thursday after he is discharged. Kasey has Hannah again, and she loves it. We see "Bend it like Beckham" and we enjoyed it. Calen tells me I'm embarrassing when I sing - so I know he's feeling better. We just have to make sure he drinks heaps of fluids now to flush his remaining kidney.
I hope he can now start life again, with hope.

Thursday, August 17, 2004 6.27 PM CDT

Calen got his wish from the Make-A-Wish Foundation! He wanted a laptop computer for hospital visits. I told him he could go to Disneyland or something and he said he couldn't take Disneyland to hospital....
Dr Tim didn't think it would happen, but I just asked him to fill out the forms - Do his doctor bit and I'll do the Mum bit.
It was a whirlwind once Desley rang to say they would grant his wish. They just had to come and interview Calen to make sure it was his wish. I tried to tell her I wanted to go to Disneyland. Calen thought she had no idea what a laptop was. He was describing one in a silly, slow voice to her. He does well at sarcasm.
Friday, May 25, The Sunshine Coast Daily sent a photographer over to our house to do a story on him for the Saturday paper. This was awkward because I didn't tell Calen he was getting the wish. We wanted to keep it a secret and I had to hide the paper from him too until the party at Bloomhill Cancer Help Centre. We invited as many people as we could on Friday and there were about 60 or so there. He wanted pizza so that's what we got. He was stunned when Desley presented his computer and of course we couldn't tear him away from it afterwards. The cameraman from Channel 7 couldn't even get a reply out of him!
He's now my little celebrity. People have recognised us out shopping. It feels weird, I just want people to know how much these things mean to us. They mean the world and they need help to do these things for others as well.

Wednesday, August 18, 2004 8:14 PM CDT

Calen's operation went well....... eventually. Linda accompanied us down on the Friday morning to admit Calen and help with Hannah who is determined to crawl soon.
Calen had to fast from 7am for the procedure and he was so good about it. We waited in the waiting room but he was happy to back in the SURF ward with the nurses he knows.
By 4pm, we are tired and frustrated - not to mention Calen who hasn't eaten since 7. The registrar comes up to tell us to go home because they've had an emergency case flown in from up north. I got annoyed - not because I thought it was their fault but because he expected us to pack up and come back on Monday! I told him to get us a date for the next one and we would stay for the weekend. Not what I'd planned but it was just too much for me. It took an hour for us to find out he is going in Monday. So we took him out to the Lodge and fed him. All weekend he has been playing his gameboy and doing puzzles with Linda. We did a little more grocery shopping and that becomes an adventure in itself!
On the Monday (June 17, 2002), Calen is admitted and we do the process all over again. He is back in the ward within a few hours, Linda went down to recovery to see him. She also spent most of the theatre time with Hannah fast asleep on her in the parents lounge. I know how lucky I am to have her help. This was all a huge shock to her when she first saw the kids in the oncology ward but she tells me it's worth it.
We were discharged on the Wednesday. Calen shows little of the fact that he has again been through surgery. His cheeky grin still makes us smile. It's just good to have him off the grumpy juice again (morphine) and have my son back.

Tuesday, August 17, 2004 7:55 PM CDT

By April, we have been to the hospital again for a CT scan and back again the following week for results and they show that a small lump is in Calen's right lung. And that means more surgery. It was to be June 7th, 2002 but we received a letter to change it to June 14th a couple of days before we were due there. So that means Calen misses our local show. He's getting used to disappointment a little to well.
Calen made it to his first day of school, but he says that he missed out on 4 weeks of his holidays so why did he have to go to school?
Other than the huge scar on his stomach there is little to show for his illness. I can forget what we've been through - sometimes.
We went on a Camp Quality family camp at Tuchekoi, near Gympie in March. Hannah was just a couple of months old and all the volunteers and families had a great time having cuddles. Joy, the camp coordinator says she's great and she didn't hear Hannah cry at night so that was unusual. But she had her turn at cuddles anyway.
As well, we have met Linda through Good Beginnings, an organisation to help out parents of young children (under 5's). It's great to have someone once a week to help out with the kids - even though Hannah is not the problem!

Tuesday, August 17, 2004 0:32 AM CDT

The plan from here on is that we are to attend a surgical review at the RCH on Jan 10 with Dr Ong, then an oncology and endocrine on Jan 18, 2002. So many trips to Brisbane and I have to drive there! That is scary enough for me, as many of you know, I'm not much of a city driver. This is one steep learning curve in more ways than one.
I know of one thing - my head swings between knowing we are kind of lucky that Calen isn't going to be put through chemo but that leaves a huge unknown, what do we do? He'll beat it somehow.
On Wed, Jan 9, Calen, Hannah and I go to a get together with Rod's family at Mooloolaba. Even though it's Summer, there's a cool breeze off the water late in the afternoon and Calen is shivering. We have dinner and Calen is complaining of a pain in his stomach. Maryann, Rod's youngest sister is a nurse and she is concerned with his condition. We are to take him straight to Nambour Emergency Ward - so first we come home, so I can feed Hannah and Phil takes Calen to the hospital. It's nearly 10pm when he rings to say they will admit him overnight. He has had an asthma attack and the coughing has caused the pain. The only thing is that he doesn't have his hormone tablets and the specialist rings to find out the details so they can fill them in for him.
So due to a few more Xrays and scans, he is not released in time for his surgical review (it's an hour and a half drive there too). The tests have found fluid on his lungs, not surprising due to the degree of surgery he has had!
So we have to take him to his GP so he can remove the dressings. Fun days, Dr Norman shakes his head at what has happened. He's know us since Calen was 8 months. I do realise how lucky we were to find the tumour when they did. The scar is healing well.
At least he is home for his 7th birthday and the party on Saturday! We finally have our housewarming and Calen's party with around 60 friends. It's a house of laughter and noise. Mel and Gaz have a thing for Calen's water pistols and others are just happy with ice! But it is great to hear laughter again.
Calen finished the hormone tablets a few days before Phil comes down with us to the oncology & endocrine appts. We seem to spend forever waiting in the Outpatients dept. And we again feel like strangers. We don't know these families or nurses and they don't know us, even though we've just been in this hospital for 4 weeks. Odd feeling.
His hormone levels seem fine and he is just having a check up with Dr Tim. We are told that we are going to have 3 monthly CT scans, bloods to check hormone levels and Ultrasounds as well as annual bone scans. His last showed a few white spots while we were in hospital but Tim thinks they should be fine. I feel some peace knowing we have some form of strategy, but it's all still so open ended from my point of view.
Hannah has slept most of the day on her dad and I am exhausted by the time we get home. At least we have a little while before the next lot of tests I guess.
And Calen is losing the hairy facial features and bloated look from his cheeks without the hormones. But his face has matured a lot too in the past month. I feel like I missed my little boy changing into a bigger boy.

Monday, August 16, 2004 7:00 AM CDT

Rod and Shorty arrived with some baby name books and we went through them together. Phil kept picking silly choices and we had a big laugh crowded around Calen's bed. He kept shaking his head or saying "nup" to them. Finally our daughter has a name - Hannah Rose Jacobi. She is 11 days old and finally has a "tag". It just seemed right and it is.
The nurses, Dr Tim and Mary are finally happy she is named and we are even keener to get on with it all now.
Calen is worried he will have to spend his birthday here too. We've had Christmas, the birth of a baby and New Years here, surely he won't have to endure that but it's just over a week away and it's not looking good....
By Wednesday, our week has been a flurry of physios & OTs as well as the usual doctors and nurses. Calen is walking, somewhat gingerly around the ward, chasing Nintendo games and asking the nursing staff, early in the mornings, when his Mum will be over to see him. He can also finally eat again and all he wants is scrambled eggs on toast! Of course that is not possible with hospital food - no fresh eggs or something like that, so Phil makes it in the room at the Lodge and races it over to us. Calen also smiles for the longest time then.
By the afternoon, we are told by the surgical staff that Calen can be discharged! We are excited at the prospect, but within the hour all that has changed as his hormone therapy hasn't be changed over to oral yet! That takes another 24 hours. And just as we are to leave, Calen breaks out in hives all over his body... Seems he is reacting to all the medications in his system for the past month. A script for Phenergan is written. So, at last, on Thurs January 3, 2002 we are out of the hospital.
So with that, we pack as much as we can of our stuff in my little Corolla hatch and drive home. I've only been back once since we've been in Brisbane to grab some essentials on Monday, but now we are actually allowed Home! It is with a fair bit of intrepidation we leave. How do we handle all this stuff at home without the help of the nurses and doctors? Suddenly I realise how much they carried us. Can I do this without them? I have phone numbers and hand written instructions on medication but this is still terrifying. Calen's words as we left the hospital were "Mum, why can't I just have Leukaemia like everyone else?" It was all I could do not to cry - Phil was driving and I had nothing to distract me. I know what he meant, Why can't we have something the doctors know how to treat and that has a favourable statistical outlook. Funny, my statement to Phil after Calen had fallen asleep along with his sister in her capsule was "No matter what happens from here on, I was the one who was lucky enough to have had him til now."

Friday, August 13, 2004 5:40 AM CDT

By Friday morning, Calen has a few tubes back again. I cringe to think of the trouble the nurses had getting the last ones out. He keeps pulling his nasal gastric tube out and that means it has to be pushed back in. The morphine makes him moody and short tempered. It's frustrating seeing your child go through all this and feeling so useless. Sometimes he wakes and just wants to kiss his sister. I hope they bond. Cale, Phil's son didn't look impressed to have a sister at first, but he got over that pretty quick. And she is such a delightful baby, very settled. I put her down on Calen's bed for a second (the sides were up and blankets were rolled on either side of her) and went to the ladies only to find she is not there when I return. Calen tells me Sally, one of the nurses picked her up. I smile as the nurses have nearly all had a cuddle. She is like a bit of normality in all this - a healthy baby.
I came up to the ward through the Emergency door the other night and the triage nurses all held their breaths for a sec, until I explained I was headed up to Surf to see my son. One answered that they dread seeing new babies coming through the door.....
I received a call from Nambour General on my mobile this afternoon. They wanted to organise an induction for me. I laughed and said my baby was in my arms and nearly a week old. You would think they'd have put 2 and 2 together after they had to fax my file details through to the Royal Womens Maternity section a couple of weeks ago....
The weekend passes without too much incident. Dr Ong has been in to check Calen regularly, we have alot of respect for this man. He cares about Calen. Calen wants to eat again.
By Monday, Dec 31st - New Years Eve. We are waiting for answers now I guess. Just waiting. Friends call with their best wishes throughout the day. I just want to be out of here and home - then I remember all the unpacking and sorting I need to do when I arrive back, things I thought I'd have done before our daughter arrived.
At 9pm, Donna calls. They are having their New Years Do at Jerry's at Dulong. Everyone yells out in the background sending their love and wishes for a great New Year. That made me feel so lonely looking out over the lights of Brisbane from the huge glass windows. A view I won't forget for as long as I live. Colourful signs of advertising lighting up the sky and cars in long rows of headlights driving home, out to dinner, visiting friends/family or passing through. I wonder when we can do that again, or whether we ever will again. What's normal life now?
Somewhere in all this, I have met some great people who's spirits have buoyed mine and kept me hoping. One is Mary Nolan, although I had no idea who she was at the time...
Not until I saw the patient bed details and her daughter's name was a series of asterisks. Then it all clicked. I had watched her story - heard it on the radio news when it first broke and cried to think of the heartache no parent should have to face. Watched them on the tv news, tried to watch the 60 minutes story of the girl's operation and been reduced to tears again for their loss and grief. Now I face my own and she is here with her words of wisdom pulling me back to earth. Now I know that God has angels on earth - I have proof.

Thursday, August 12, 2004 7:53 PM CDT

Dec 27 - Calen's worse than yesterday. The doctors are constantly milling in our room. Hard to get any idea of what's going on.
The baby is doing well - we still haven't been able to sit down and agree on a name for her. People used to ask when I was having the baby, now it's when will you give her a name? When we feel like we've found one.......
We needed to get groceries so Phil and I leave Calen for a few hours. Not feeling too good about this.
We get back to the lodge around 9pm. We are heading back over to wish him a goodnight and give him a hug when the phone rings - he needs to go into surgery NOW! I panic saying they can't but the registrar says we have no choice. Phil is out the door and gone before I can think of what to do. I know he's running as fast as he can to see Calen before they take him to Theatre. I'm feeling ill and when I look at our new baby sleeping peacefully on the bed, I realise her reason for being. She's my rock to keep me grounded in all this turmoil. I thank God for her.
A long 2 hours later, Calen is out and doing well. They were able to unstick his small bowel easily and sew him back up. Part of his 25cm scar had to be opened again. I find it hard to look at it, even though I know if it wasn't there, he wouldn't be either.
It's a slow process of recovery again. All up, Calen has only been able to eat a couple of days out of the 3 weeks we've been here and we have no idea of how long we have to stay yet.
Dr Tim (oncologist) tells us this type of cancer (and it was malignant @ 725g) doesn't respond well to radiation or any known chemo, it's all trial and error. He's not keen to do this now.
How do you face that? Here we are in the largest hospital in our state, looking cancer in the face and we're in a surgical ward, a world away from the oncology ward. We feel like aliens. We have kids with horrific burns, broken limbs, and post surgery here.
This can only get better!

Wednesday, August 11, 2004 7:07 PM CDT

Each morning, we walk the 400 odd metres to the hospital with the baby to sit by Calen's bed until late at night when we wander back to eat and sleep.

By Boxing Day we are told by the registrar that it is feared Calen has suffered an adhesion of the bowel, another complication from the surgery. He is in agony, even on the pain killers again. Another barrage of tests and in the middle of this - more visitors. I feel awkward that his school friends see him like this. Calen is totally unresponsive and often screaming "Owowowowo" strung together like it's one word. His temps fluctuate and his blood pressure too. They are planning surgery for Friday, if he can wait that long.

Wednesday, August 11, 2004 9:08 AM CDT

Within a couple of hours of our daughter's birth, Phil and I are back in Calen's room so he can meet his new sister. He is tired and seems uninterested, I find it frustrating as I know how much he had been looking forward to this. He is bloated from artificial hormones to help his other adrenal gland cope and level out his natural hormones. His hands are marked from the canular changes. His central line was removed a couple of days ago from his neck and the drains and nasal gastric tube is gone, but I can see he is not well. It pulls at my heartstrings to leave him and go back to my ward but that is the deal and I have a midwife and wardsperson to escort me. I feel like we've been imprisoned.

With 2 days to Christmas I am determined to be out by it's Eve. My brother Damien, brings Calen to "visit" in a wheelchair and swings by the cafeteria on the way back... Lynolle rings from the Surf ward to ask if they've left, and I tell her, yes - via the cafe... She laughes and says Calen's as cheeky as his uncle, they were only supposed to see me and return! At least Calen is smiling and happy to see his sister. He didn't even ask why we hadn't named her yet.

By evening we have visitors, Calen's kindy teachers are here and of course, they have to come and see the new baby. We were blessed with many families, teachers, staff and friends and their visits have kept us buoyed. It seems strange to be in this position, but I have a gratitude to all of them for coming and just being there. Calen's rooms have been adorned with artwork, letters, jokes and messages of love and hope. We get regular phone calls and his school teacher at Harmony Montessori, back home on the Coast, Maria is keeping people informed with a telephone tree to pass on the updates. But it's difficult for us to free ourselves for long enough to talk and even more emotionally draining having to explain what's happening.

By Dec 24, I am out of hospital and we are able to take Calen in a wheelchair to the Lodge for the Christmas Party. He is sluggish and doesn't join in. We are all so sick of this and don't know how much more we can handle.

Christmas Day and Calen's room is full of wrapping paper, torn boxes, packaging and presents. We are stunned with the volume. He lays on his bed and directs a remote controlled semi around the floor. He isn't walking properly yet and is often in pain. His canular stays in only until it's changed to other hand. Calen now hates any needles. Yet again, we are visited by friends - my girlfriend Michelle drops by with a gift for Calen, an Ooglie - he loves it, and a basket of gift for the baby. I am at a loss for words. We don't have much here for her and even finding a name is becoming a hassle.

Hospital staff are away on holidays and we don't see them until the New Year, just a skeleton staff who do a fantastic job. Deb, Calen's nurse is wonderful - seeking countless batteries and tending to his needs. We even get to take him back to the Lodge for a few hours, but the stifling heat means we have to bring him back as he can't cope with it. Not that we argue, it's cooler inside.

I still find it difficult to know how to process all this. What is Calen's future? What does God have in store for him? We are struggling to deal with the gravity of it all and how this affects us long term.

And by Christmas night, the registrar informs us there is another concern. During the previous night, Calen has had high blood pressure and temperatures. They've tried to adjust his meds but to no avail. Something is not right again.

Wednesday, August 11, 2004 9:08 AM CDT

Calen looked so small in ICU, I couldn't believe how small he looked with all those tubes and drains attached to him. I found it distressing to see him so helpless. He would wake and ask us to move because he couldn't see the tv!!! What tv? In ICU?

He was out of ICU by just after 7 on December 18th - so much for the 5 days the surgeon thought we needed! He slept back in Surf ward but by about 9pm, he asked me to read him some Harry Potter. So that's what we did for 2 hours, punctuated by doctors' visits and nurses checking vitals.....

Calen keeps getting stronger and stronger, hopefully he'll be able to eat soon. We have to wait for his bowels to get back into action after being compressed for nearly 7 hours in surgery - boy was he looking forward to that! He told me he has to be eating by Christmas Day! I'd forgotten about that - even the decorations hadn't reminded me, when I do look at them, they seem sad - it's still a hospital after all.

Our nurses are wonderful. Calen's favourites are Ann Maree and Lynolle. Nick makes him laugh with his irish accent and magic tricks! And the Clown Doctors make us all laugh, one asked Calen if his mum had swallowed a basketball - I sure look like I did!

By Friday night, I know it's not long before this baby arrives, I'm uncomfortable and I refuse to sit in a wheelchair back to the Lodge.

By 6:30am Sat, my waters have broken and we are in the Royal Womens again. I'm worried about Calen, I won't be able to sit with him, and Gaz is called at around 7. He agrees to sit with Calen for a few hours, I have until 3 to have the baby so he can go home! I made it, Phil's and my baby girl is born at 2:55pm weighing 7 pounds.

Wednesday, August 11, 2004 8:55 AM CDT

You know something is not right when after a day of sitting in an Emergency Room (December 6, 2001) at your local hospital (Nambour General in our case), 9am - 5:30pm, a barrage of tests - X-rays, ultrasound, CT and a few doctors with a 6 yo (nearly 7!) child who is listless and sore, when you are approached by 3 staff members - doctors you haven't met who proceed to pull a small curtain around your son's bed and inform you he has a tumour on his right kidney. Then without a second breath, continues saying an ambulance will be taking you to the Royal Childrens Hospital in Brisbane, almost immediately.

This was our experience after taking my son, Calen to the hospital for tests for "Glandular Fever" - stunned & confused I asked the doctor - What about the Glandular Fever? He shook his head and tried to calmly explain that the tumour was the cause of my child's pain and swollen liver the GP had been concerned about.

From then on, we were thrown into an unknown world, dealing with an unknown monster, with little knowledge of how to deal with it all.

At the Royal Childrens Emergency room, we waited while countless doctors, nurses and other specialists poked, prodded and asked repetitive questions about his condition. None were sure what we were dealing with but one mentioned a Wilms Tumour and it's treatment. I cringed at the thought of chemo and surgery followed by more chemo.....

By 11:30pm, Calen was finally admitted to the Surf Ward (Surgical F) and I was taken to the Royal Womens at the other end of the complex as I was experiencing labour pains!!!

I was 38 weeks pregnant with my daughter at the time and it was less than 3 weeks to Christmas, we had moved house only 4 days previously and now we were in Brisbane, 100 or so kilometres from home, but it could have been a universe away. I guess the stress had got to me, during the day my ankles had swollen and I was exhausted emotionally trying to get my head around it all.

Finally after a CT guided biopsy on December 7 and a long wait, the day I'm released from the Womens Hospital still in 1 piece (December 11), we meet the Surgical registrar and ask him if they know what it is. Yes, Adreno Cortical Carcinoma. What does that mean? Well all we were told about chemo and surgery goes out the window. His tumour will be operated on as soon as it can be organised. It is extremely rare, and usually found in Brazil! How do we deal with that?

Over the next few days we learn more about the tumour from Dr Tim Hassall, the oncologist. Finally, we are starting to recognise specialists and what they do. We have surgeons, oncologists, endocrinologists and paediatrians. It's like a crash course in a subject you had no wish to ever learn, now you have to.

This form of cancer affects the Adrenal gland cortex (the outer layer of the gland, which is usually very small and positioned above the kidney on either side. This gland controls hormones such as testosterone output... Calen's was working overtime and he had begun to show physical signs of puberty.

Surgery was performed on Dec 17 by Dr Tat Ong, we were told to expect around 3 hours. But at that time we were rung and asked to be at the theatre door in 5 minutes! My heart raced and I feared the worst. The surgeon called back - I couldn't move very fast at 39 weeks! Calen's tumour was not connected to his kidney but stuck firmly to his liver, there were complications and he needed my permission to take a portion of his liver and repair some of the damage. "Just do it" was my reply.

We returned to our accomodation unit at the Lodge behind the hospital and wait. It is another 4 hours before the surgeon rings to say Calen is ok and he is coming over to see us.

Dr Ong explains that the tumour was twice the size they had expected - "We went looking for a grapefruit and found 2" and as he had tried to remove it from the liver, the capsule had been breached and cells were spilt. My heart broke there and then and I didn't hear much else he was saying. But this was only the start.