No changes

Not a lot has changed for Kal,still on antibiotics and still on fluids to help flush the chemo out of his system.The levels are lower than i thought they would be this morning and should definately be discharged tomorrow.That will give Kal a few days off before tests on Monday and admission for more chemo on Wednesday.Hopefully we can make the most of those few days.Kal's still doing really well so we should be able go out for the day somewhere.

Kal doing well

Kal woke this morning feeling well and seemingly over his sickness from the previous night.It turned out to be somewhat of an emotional morning with Eida's mum Sylvie leaving and taking her gorgeous little girl home.She made a special trip up to the hospital yesterday to say goodbye and wanted Kallan to sign a poster for her.When i gave her the poster this morning she gave me a photo of Eida before she got sick.She looks a little different but still absolutely adorable.It's a photo we'll cherish for a long time.

Everything is going according to plan at this stage with the earliest possible discharge being Saturday depending on blood results.The only real downer of the day came with an extremely controversial finish to the starlight quiz.With Kal safely in front and seemingly with his hands on the prize Captain Powers decided on one more question worth 10 points.But it was Eliza who snuck through with the correct answer which gave her yet another victory.Captain Powers did feel a little sorry for Kal and has offered him first shot at the UNO championship belt tomorrow.Kal's availability for that match will depend on a medical clearance.

Latest chemo complete

Kal's latest chemo treatment started at around 11 o'clock this morning.After the 4hrs of chemo he felt ok but he really slowed down late in the afternoon and by night time he'd become quite crook.He was given some meds for nausea which helped enough for him to get to sleep and hopefully he will wake feeling better.At this stage it seems to be going very similarly to the last methotrexate where it made him crook for a little while but he got over it pretty quick.I'd say it would be at least another 3 days before the levels of the drug are low enough for him to be discharged.It'll only be another short break before he is back for some more chemo.After that lot though we'll get a decent break and hopefully be able to spend some time at home.

Chemo tomorrow

Kallan will start his next round of chemo tomorrow morning.He still has a few days of antibiotics to go but the doctors say he's well enough to start now.He will remain in clancy ward but he's been moved to another room where it'll be a little quieter for him.

Shaylie would've been quite proud of Kallan today as he won the starlight quiz this afternoon.He started late but cashed in on 2 multi point questions to spring a stunning upset win over multi time champion Eliza.We know Eliza and her family from down at the house and nicer bunch of people your not likely to meet.Her and Shaylie have had some ding dong battles in the past.

Fingers crossed Kal gets through this next step OK and is able to get over it quickly.He's due to have more chemo at the end of next week and even allowing for some recovery time here in Sydney we should still get home for a week or so.Both Kallan and i can't wait for that.

Posters are up

At around lunchtime today Karina noticed one of Kal's posters on the wall at the hospital,as we walked further we spotted another,then another and pretty soon we realised they were everywhere.We told Kal and he didn't seem that fazed about it,he joked that he should get a fake mustache for a disguise.But i think he was a bit shocked when he saw how many were up around the place.

I forgot to mention previously that among all the dramas just recently kallan also developed a split in his line.They were able to repair it easily enough but then realised that it was blocked as well.They injected stuff into his line to try and dissolve whatever was blocked.It was left in his line for over an hour and thankfully it did the trick otherwise he would've needed to be put under to have it cleaned out.

As it stands now it's more antibiotics and waiting for the go ahead for chemo.The doctors said they don't have to wait for the antibiotics to finish before they start chemo.So he may start any day now cause he looks and feels really good.

Sunday update

Kallan remains in very good spirits in fact i think that one of,or a combination of some of the antibiotics,are causing Kal to become a little hypo.I don't know how else to describe his mood because he's just coming out with the wackiest things and having a real good laugh even if he's the only one who thinks it's funny.Lets hope the rave party goers never get on to that stuff.He's still busting to get down to camperdown ward because in his words "it's just not the same up here".Plus i think the fact that he has to share a room with three other patients has something to do with it.He's never encounted that before and he's finding it a bit hard to get used to.Mum even more so as she's been only too kind to volunteer to stay up with him the last two nights so Karina and I could spend some much needed time together.I'm so grateful for that too because i've missed Karina heaps and i've really enjoyed the extra bit of time we've had together away from the hospital.It's been invaluable having mum down here especially through the tough time we've had this week.

Kallan's most recent blood test have returned negative cultures meaning that his line is clear of infection.As long as he keeps returning negative blood cultures for the next 7 days he can be discharged.I spoke to the doctors this morning about his next lot of chemo and they said with the way he's progressing they may start as soon as the course of antibiotics is finished.Lets hope he gets back down to camperdown for that.

Saturday update

Kallan was transferred out of icu and into clancy ward.He wasn't impressed with not being able to go to camperdown and had actually become quite comfortable in icu and was kind of enjoying having his own nurse in the room.But as the doctor explained he's too well to be in icu and even said "when i first wanted to bring you up here you didn't want to come and now i can't get rid of you".When a bed becomes available at camperdown he'll be able to go there.He feels so much more at home there which is understandable considering that's where he has always gone.But apart from that he's doing really well and may even start his next round of chemo within the next few days.

With Kallan doing so much better Karina,myself and a few friends went out to see Fall Out Boy at Acer Arena.Not only was it a good concert but it was much needed break from all that's been going on.We hope now that the worst is behind us and it's all smooth sailing from here.

At last some good news

Despite remaining in intensive care Kallan is stable and off the medication for his blood pressure.As i mentioned last time he responded immediately to the medication and it didn't take long for them to work out the ideal dosage.During the night the dosage was gradually reduced as his condition improved.As the day went on his condition had gotten to the stage where he no longer needed the medication and it was turned off at around 2pm.In fact if camperdown ward had a bed available he would've gone there.It's great to finally feel some relief and see the old Kallan come back to us.Later that night Kal and i watched Bruce almighty and anyone who's watched a funny movie with Kal would know what i mean when i say i don't know what was funnier the movie or Kal.The nurse in Kal's room(nurses in icu have little work stations in the room)even told him he was allowed to stay up all night watching funny movies because she could listen to that laugh all night.He's had quite a few visitors throughout the day including Nanny T and Auntie Netty plus families from down the house.A few nurses from camperdown also paid him a visit and when i saw 2 of them downstairs they told me he should definitely get a bed down there tomorrow.Fingers crossed that happens and i never thought I'd look forward to the little pull out beds in the ward but they beat a couple of plastic chairs any day.I don't know how long Kal will have his chemo delayed but we'll worry about that later.

A horrible few days

After trying to come to terms with the death of our gorgeous little friend Eida, Kallan fell ill,very ill.As you'll all be aware i missed updating Kal's blog yesterday.Late yesterday evening Kallan got a temperature and i quickly took him up to hospital where he was checked into the emergency department.His temperature had dropped a little until they accessed his lines.Kallan had what they call a septic shower meaning that when they flushed his line Kal got a big dose of the infection straight into his blood.He went into shock and his heart rate sky rocketed to over 180 and his blood pressure dropped considerably.To say i was scared would be the understatement of the century.Throughout the day Kal continue to have trouble with his blood pressure to the point where he was transferred to the intensive care unit.Kal became extremely worried(as did i)but we were assured from the ICU doctors that it was only because he needed a medication that can only be administered at ICU.This medication it's hoped will control his blood pressure while a course of antibiotics will attack the infection.Once the infection is controlled his blood pressure should return to normal.

The good news is that Kal is looking and feeling much better and his blood pressure responded immediately to the medication with the doctors now reducing the dosage.They fiddled with the dosage for a little while to try and find just the right amount.He's settled well now and we're all so relieved.It's been such an emotional few days and i would say easily the hardest couple of days of our time here.I hope and prey that the worst has now passed and the doctors are confident that he'll be well enough to return to the ward by tomorrow.At this stage I'm unsure as to how long he'll be receiving antibiotics but the nurse has said it'll be for at least another 7 days.

Rest in peace beautiful one

I can't begin to tell you how hard it is to write this post.Everyone here at the house has been left crushed by the sudden death of an unbelievably gorgeous little girl i once dubbed "My little french princess".Her name was Eida and she just stole my heart.I later found out she wasn't french but from New Caledonia and french was the spoken language.Her mother,Silvie,used to tell me "Eida when she see you she so happy".Well i can tell you just seeing her brightened my day no end.She touched the hearts of all who came into contact with her and Karina,Mum,Kallan,Shaylie and I have been left devastated by her passing.I think what made her so adorable to me was how she responded to me.It was only the other day we were playing and she wouldn't let me get up and walk away.I'd say "Darren go now" and she'd yell as loud as her soft little voice would let her "NO NO".You know earlier that day she was poking a bit of fun at me by giving everyone cuddles but when i asked for one she'd say "no".But i gotta say i just loved it when it was me who was getting the biggest cuddles by nights end. At this stage details are extremely sketchy as to what happened and how this tragedy occurred.Eida's father Hamou and 8yr old sister Manou have only recently returned home for Manou to resume school and for Hamou to go back to work.They too are just beautiful people.They will be holding a service here in her memory in the next few days such is the impact she had on everyone at the house,staff very much included.

Bye Bye little one you'll never know how much you touch my heart but i'll never forget you.I'm so grateful to have met you and your family,parents Silvie and Hamou and big sister Manou.I'm going to miss you so much.

Unsure of bed.......Again

After putting Kal's admission form in at clinic this morning I was told that they won't know if there's a bed available till the morning.I'm getting used to it now and i know they've quite a number of recently diagnosed patients.Shaylie went to school this morning while Kallan had tutoring after lunch followed by physio immediately after that.The physio is very pleased with his progress with him now able to straighten his arm a further 10 degrees.He's been given some new exercises to start working on his shoulder but the main aim for now is to get his arm straight.His shoulder will come slowly and it's steady as shes goes for now as far as that's concerned.His Physio work can be painful for him but he's determined to get it back to normal and he just gritts his teeth and gets through it.

After a fleeting visit at lunch time from school,Shaylie returned to the starlight room after school and almost pulled off a victory in her comeback quiz game.Captain crazy informed me that she was beaten by a single point.She was very much looking forward to Shaylie returning after she visited Kallan in the ward earlier in the week and i told her shaylie was coming back.She said they've missed her in the quizes and at the craft table.

Kallan was so glad his Mum came down today despite her still not feeling the best.With her not wanting to infect Kal or other kids with something she thought it best to go home.With a number of kids going through chemo here,if one child gets an infection of some sort it could spread like wildfire.Although upset Mum left so soon he understood why.

Pretty quiet day

Not a lot to report on today apart from Shaylie and Pop coming down to spend a few days here.Pop has a few days work down this way and when Karina fell ill and wasn't able to come down he drove down a day early to bring Shaylie down.Although both Kallan and i were disappointed that Karina couldn't make it having Shaylie and Phil down here made up for it somewhat.We don't have a lot planned for tomorrow but would like to do something because Kallan is due back on ward on tuesday.Hopefully I'll have something a little more exciting to report tomorrow

relief at discharge

Today just after lunchtime Kallan was able to leave the hospital.His levels were still just above 100 but because the bloods were taken at 6 o'clock this morning the doctors were confident the levels would be below 100 as required by lunchtime.It'll only be a very short break from hospital as he has already been booked in for admission on Tuesday.The next couple of weeks are going to be pretty hectic as far as chemo is concerned but after each one we are going to be that much closer to the end.We all can't wait for that day.We are planning to stick it out down here for the next few weeks then when he has a decent break in chemo we'll be heading home for a while.Can't wait for that either.

Physically good,emotionally.......well?

Kal continues to improve physically but as is becoming the norm after chemo he's struggling emotionally.He really misses his mum especially but he also misses other family and home as well.I had a chat to one of the nurses about it and she said that it's most certainly not uncommon but she still thought it'd be good to have someone come and talk to Kal about things.That did happen late in the afternoon and she was comfortable that Kal was ok and all the things he was feeling were completely normal and understandable.She suggested a few different things for him to try to get by in those down times.He had a visit from the back on track teachers and at the time Kal was having one of his moments and they did a great job in picking him up.One of them started talking wrestling and that got Kal's attention well and truly.He also had a visit from the physio therapist and she was very impressed with how he's progressing.His movement has improved significantly but she stressed that he needs to keep up the work to further his improvement.As expected his methotrexate levels dropped a great deal but not enough for discharge,hopefully that may happen tomorrow.

On the mend

Kal's feeling much better today,eating and drinking a little bit at a time.His methatrexate levels are still very high but that's pretty normal at this stage.We got through some more school work today but we have to do it little bits at a time because he's still a bit sleepy.While Kal was having a break from chemo for his operation we noticed that his hair was growing back.It was actually growing back darker than it was originally.But after his recent rounds of chemo that has come to a halt fairly quickly.I noticed hair on his pillow today and while having a shower i washed his head and quite a bit more came out.I didn't think it would take too long because it didn't take long to fall out in the first place.Nanny carol came down today and Kallan said not long ago that it feels good to have her down here because it's better having someone down here than just me.Good thing i know he loves me hey.He also misses his mum terribly and having nan here helps with that side of things as well.We are expecting quite a significant drop in his methatrexate levels tomorrow but it's extremely unlikely they will be low enough for him to be discharged.

A mixed bag

Kal's chemo started very early this morning at 6 o'clock.It was all over by 10 o'clock but it's the after effects that are the main concern.He wasn't real happy with me stepping out for a while this morning and the nurse said he was complaining of feeling sick and having a sore back.She knows Kal quite well from his time here and she seemed to think it was more him fretting a little bit when i wasn't around.He seemed to settle pretty much straight away so maybe she was right.After having a good sleep we went through some school work that was sent down and along with the school work their was lots of cards and letters from his class.Quite a few of the kids were new to the class but still offered some very comforting and supportive words.He really appreciated it.He's continued on with his arm exercises and we are beginning to see some significant results with his arm now straightening a further 15 degrees from yesterday when he was last measured.Unfortunately the night didn't end well with Kal feeling ill and vomiting a few times.He settled after some medication and then fell off to sleep.Hopefully that will be the end of that and the time left on the ward isn't too unpleasent

Better late than never

Kal went to hospital school this morning and i went to the gym while the chance presented itself.I picked up Kal at about lunch time and while he went to physio i went to check if there was a bed for him but unfortunately they only had bad news and told me to try again tomorrow.A little while later as we were just getting settled ready for tea we got a call from clinic to say they had a bed and to bring him straight up to have some blood taken.After blood was taken and some paperwork filled out they told us to go back to the house have some dinner then come back about 8 o'clock.No chemo will be administered tonight only fluids.Chemo will start first thing in the morning and i know Kal probably won't agree but i'm so pleased that it's underway again.It just felt like everything had come to a standstill.Hopefully Kal will handle it ok so that he can do some fun things while he's in here to help pass the time and possibly be up for some visitors.

Back to reality

After our great but all too brief weekend at home we awoke this morning both feeling a little down.Having said that we both new that this is reality and we won't be going anywhere soon so we needed to snap out of it pretty quickley.Kal went up for some more tutoring today and is going to hospital school tomorrow.He knows he needs to catch up on school work and it's great to see that he's willing to put the work in.All going well he'll be admitted for chemo around lunch time but after going to clinic this morning to find out a time i was told that their may not be beds available.I'd love to know how they work things because there's kids on other wards receiving treatment while other kids on camperdown ward(cancer ward)who aren't receiving treatment and only there because of temperature or infections.Surely those kids can be placed elsewhere while the kids who are due for treatment can it have as planned.One little girl at the house has already been told there's no beds and last time she needed treatment she was turned away 3 times.Fingers crossed he'll get a bed so they can start fluids in preperation for chemo.It'll only go for 4hrs but he'll need to stay on ward till the drug is flushed out of his system.That usually takes a few days.

Weekend update

Yesterday morning Kallan and I rose bright and early to head home for the weekend.I didn't even make it out of the car before Shaylie came running out for a big cuddle.It was a great feeling to see her so excited to see us.After doing some last minute shopping for the wedding Kal and I rested up in preperation for the night ahead.And what a night it was.A great setting surrounded by great people altogether for a great cause made it impossible not to have a good time.As much as i enjoyed being back home and sleeping in my own bed again the fact it was just the one night made it seem like a bit of a tease.It's something that both Kallan and I long for and we both would've loved it to be a much longer stay but as i said it was for a very good cause and i'd do it again tomorrow if i had too.

The upside to Kallan and i returning to sydney today was that we got to go to the Top Gear Live show at Acer Arena.Tickets were given to the house earlier in the week and they were given out to whoever wanted them.It was actually very enjoyable and,as is the t.v show,was pretty humerous in parts.It's always good to listen to a couple of poms taking the piss out of themselves(sorry mark).Although i've got to say they weren't even close to the form you were in on saturday night Mark.Very funny indeed and i would go as far as saying that there will be plenty of stories told for a while to come.I would like to sign off by wishing Ronnie and Annette Alexander all the best and plenty off good times ahead,especially when all is back to some sort of nomality for us and Ronnie can teach us how to ski although from what i heard last night i should probably get some tips off Mark.

Good surgeons report

This morning was a busy morning.Firstly he had to have blood taken then it was off to meet with Dr Stalley.He was very pleased with Kallan's progress but wants his physio stepped up considerably because of the restricted movement in his elbow.This was caused by his arm being kept still for too long in the sling and i've been instructed to get rid of the sling.I did try to get Kal to start straightening his arm but at the same time was unsure how far to push him.Apart from that he was very happy with his progress and even said into his little voice recorder when he was taking notes that "this young man is doing remarkably well".After leaving the medical centre we then had to go back to clinic just to get his blood counts which turned out to be very good.As a result chemo will go ahead on tuesday which again will be depending on bed availability.Apparently they have a number of kids scheduled to be admitted both monday and tuesday.

Kallan and i are very much looking forward to returning home tomorrow even if it's only for the one night.It'll be great to be amongst family again to celebrate Annette and Ronnie's wedding.Kallan actually wants to keep a bit of a low profile but somehow i think that's going to be next to impossible.

Back to school

After a pretty quiet morning Kal headed up to the nearby medical centre for some maths tutoring courtesy of the back on track organisation.They specialise in getting sick kids prepared for a return to school,hence the name back on track.He had an hour session that even ran a little overtime and Kal actually enjoyed it.The tutor said he did quite well especially since he's missed so much school.Kal even suprised himself,so much so that when nan told me that the tutor was impressed Kal remarked "yeah i'm a lot smarter than i thought".We have organised for another session next week which Kal is actually looking forward to.

Kal's admission day has been put back again but only to the following day simply because there is quite a few kids scheduled for admission on the monday.It seems like forever since his last round of chemo but maybe i'm just a little impatient which is something,quite shockingly i might add,i've been acussed of once or twice before.

Lounge lizard

Today was another uneventful day apart from me missing out on my massage.Every few weeks a lady comes to the house and gives massages to those in need.This morning i was booked in for 10 o'clock and after waiting a little while i was told that she wasn't coming because she'd hurt her wrist.Likely story.The rest of the day remained pretty boring untill late in the afternoon when our friend from the public relations department,Julie Law,came down to visit Kal with some pretty cool news.She just loves Kal(who could blame her)and she did a fair bit work to get Kal,Shaylie,Karina and I tickets to the next socceroos world cup qualifier.I don't know who was more excited Kallan or me.I know i can't wait for it and Kal's already talking about who's might be playing and who's injured and unavailable.It was a really cool end to a pretty drab day.

Thankyou function

This morning Kallan,Karina and i were invited to attend a thankyou function for organisations who have donated or contributed to events such as the Teddy Bears Picnic and Bandaged Bear Day.I was also asked to get up and say a few words on behalf of Kallan mainly to give the people attending a first hand account of the impact Kallan's illness has had on our whole family and how much these events mean to the hundreds of kids who are struck down by illnesses such as Kallan's.He was made to feel very special and so he should be.I only hope the short speech i made conveyed how proud i am of him.He had lots of people come up to him wanting to chat and learn a bit more about him and Karina and i were approached by quite a few aswell.I don't know about Karina but i kind of a little felt a little special too.

The rest of the day was spent just relaxing down at the house and later on we got a call from Nanny Carol asking if it was alright if she came down for a couple of days.As if we were going to say no to that.

Long day at clinc

This morning we rose early to get blood taken thinking we'd get a headstart with the aim being a quick clinic visit.As they have to wait for blood results to come through before the doctors can see him the thinking was that if we got blood taken early then we wouldn't have too much of a delay.Not so.With our appointment scheduled for 10:30am we had to wait for nearly 2.5hrs past our appointment time before we were called.While in seeing the doctor we were told that his blood counts had improved slightly but his magnesium levels and platlettes were still quite low.At this stage he's still scheduled for treatment to begin on the 9th but they want more blood taken on friday to check levels again before going ahead with admission.

We then went to westfield shopping centre at parramatta so Kallan and i could get some cool threads for Annette and Ronnie's wedding.What an ordeal it turned out to be.We'd sorted Kal out pretty quick but for some reason finding something for me within our limited price range was quite difficult.I'm still without a shirt at this stage but there's still a bit of time so i'm not panicing.....yet.

Hogspitality

This morning the manager of the house gave me a voucher for the Hogs breath cafe that she said was meant to be given to us last year before christmas.It was for $75 and it just so happened that Karina and i were trying to think of somewhere to go for lunch when she and Allison and the kids arrived.So it was off to the Hogs breath and boy i for one was salivating during the short trip there.Kal had been asking about going there for quite a while but we had to make sure he was up to it and there was no hesitation with him today.Just for the record it lived up to my lofty expectations.It wasn't just the food that Kal and i loved but to have Al and the kids aswell as Karina and Shay there just topped it off.A short time after arriving home Nanny T and Aunty Netty arrived for a visit.Nanny T was very proud of herself as she was able to drive all the way.Anyone who is aware of her recent health issues would understand what an achievment that was.All in all it was a very enjoyable day one which i hope can be replicated in the near future be it with any members of our family.