Rough Day

It has been a pretty rough day for Kal. The morning was spent sleeping as he was comfortable after the pain doctors decided to change some of his pain meds. He still has his regional (line in neck with local being fed) and changed his PCA (morphine button) to 4 hourly orals. This will therefore stay in his system longer but does take longer time to take affect than the morphine. Along with all this he has been vomiting since late last night.

This afternoon and evening has been spent trialling with an array of anti-nausea meds. The combinations he was having during chemo do not seem to be working for him at the moment. Much to the dismay of everyone...Kal more so than anyone.

He had his drain taken from his arm today which hurt quite a bit and following that he had a trip to x-ray to check on the surgeons handy work.

We are still rotating Kal and they were hoping to get him out of bed to start some physio on his legs, but with everything still hooked up that was not possible. Kal is now helping alot more with the position changing and is now nearly able to roll on his side alone.

After the last few days we have been looking forward to Kal showing a bit more personality to which he did today. After taking some oral meds he swallowed then asked "can you give me something to knock this down with". Obviously it tasted disgusting and he wanted to rid the taste! We also have a baby in the ward the has been screaming alot..Kallan asked us if we could "go and turn that baby off". If only.....

We are not too much in New Year frame of mind but wish all a Happy New Year and hope for a damn better 2009. Have a drink for us, a few if you don't mind!

Recovery

Today marked the first day of recovery for Kallan after his major surgery.He's doing really well but still very sleepy.Even when awake he's still not himself but Dr Stalley himself said to him "your one tough little cookie".He also said that the tumor was quite large and had gotten in and around the muscle surrounding his shoulder.He explained that because of this he actually had to cut through some of the muscle and when the prosthesis was put in he was unable to re-attach some of the muscle because they were too short.As a result Kallan will lose some movement and strength in his arm but i know that in time he will understand that it's just a small price to pay. The pain team here have done a great job of keeping on top of his pain levels right from the word go.He has what they call a nerve block which is an extremely fine tube that they inserted in his neck close to the operated arm.That line has anesthetic slowly running through it which is working really well.He has morphine as back whenever he feels he needs it.He also has a drain coming from his arm aswell as a cathader(yes my eyes are watering just writing that).

After a long sleep in the afternoon he seemed a little brighter and Karina even managed to get a little giggle out of him.The docters and nurses have all remarked how wonderful he is coping considering the magnetude of his ordeal.We need to move Kal around regularly to limit the chance of blood clots and bed sores.Just moving Kal can be very painful for him but we don't hear a whimper from him,he's just an amazing kid(i may be a touch biased).

On a lighter note the iced chocolates are going down great(and regularly)and thanks to phil and the gift card(or were they business cards phil)he bought for me they will continue to do so.I'm sure my mum will fill anyone in on the business card joke if they wish

The Big Day

What a day!A later then expected start for his operation made the day extremely long for poor Kal,especially considering he had to fast for the whole day.True to form though he was in fantastic spirits all day ,even more so when Nan and Pop arrived.The call came for Kallan to be transported to theatre at about 3:30pm and he went under at about 4pm.As Kal was being wheeled away some tears emerged from Kal's eyes(mine too)and karina said his last words before going to sleep were "I'm scared mum".All up the operation took around 3 and a half hours with Dr Stalley labelling the operation a success.He also mentioned that there was quite a large tumor and it has effected some of the surrounding muscle which will result in some restriction of movement in his arm.Unfortunatelly for Kal Dr Stalley said that participation in contact sport would be extremely foolish which i know will devistate Kal and will take him some time to deal with.

Apart from that Kal came out of the operation really well and his pain was well under control.It was a very anxious wait for us all and as you would expect i was a model of patience and calmness(Karina may try and tell you otherwise).Throughout the day plenty of messages flowed from concerned family and friends.I can't thank those people enough for that.The next few days will no doubt be very tough for kal as he deals with the pain and other things but continued support like that already received will no doubt keep his spirits high.Anyway Kal another hump in the road overcome and the finish line is just that little bit closer, your mother and i love you very much and couldn't be more proud.

plenty of fun before big day

No prizes for guessing where Kallan and i spent a lot of saturday.That's right Royal Bero Golf course.In the morning Kallan,Karina and i spent a few hours together at the movies.Then it was off to bero for more golf.In the last post i mentioned how Kal has shown some real ability well that ability almost bought him his first ever birdie.The 2nd hole is a par 3 and after he put his tee shot on the green his putt was tracking straight at the hole with a bit too much speed and hit the hole but and unluckely sat cm's from the hole.Very unlucky mate but as knowlesy later said it won't be too long before the birdies start flowing.Later that evening we had a most enjoyable time at the harvey's(scott and reggie if you don't know)had many laughs and the kids just had a ball.Just what we all needed at this time.

Today was spent relaxing then getting everything together for the trip to sydney.It's a very big occasion for Kal tomorrow,a big turning point for him,but anyone who has spent time with Kal would be forgiven for thinking that he didn't have a care in the world such is his amazing attitude and just his wonderful personality.It goes without saying how proud you make me feel kal but you just seem to make me prouder with every step we take through this journey.I'll have all my fingers and toes crossed but at the same time i'm confident of the best possible outcome.So i would ask that if any of you have a bit of free time say a prayer,cross some fingers or just keep kal in your thoughts as he prepares for this huge step

Boxing Day

Big day for Kal.Firstly it was off to our regular haunt,beresfield golf course(good layout for beginners)where he's showing some real ability.We were lucky enough to be joined by my old mate knowlesy and his son Jack.Thank heaven for motorised carts that's all i can say because it was a scorcher.

In the evening we ventured to Energy Australia Stadium for the Jets v Mariners clash.Kallan's uncle Mark came with us, i think his home town team Leeds United's form rubbed off because unfortunately the night didn't end on a good note with the Mariners too good for the Jets, scoring 2 second half goals to cancel out Joel Griffiths' opener to run out 2-1 winners.A very dissapointed Kal commented that the Jets had to find some players and fast.

Shaylie had a sleepover at aunty Netty's and Ronnie's last night with cousin Saskia so i'm sure plenty of girly fun was had.Bet you had fun too Ronnie

Christmas Day

It was a very relaxing and enjoyable day for the Egar family.We just stayed home and all our loved ones came to us.His only real wish for christmas was that he could be at home with all of his family around him,It was great to see that happen.Unfortunately Kal's day wasn't without a hick up.After visiting John Hunter on christmas eve for bloods i forgot to get the nurses to change his dressing and by yesterday it was literally hanging off him.But a lovely nurse at the after hours GP service at John Hunter who had experience in changing central line dressings hung around after her shift just to change Kal's dressing,so we were very thankful to her for making it a very quick and pleasent visit.

I hope all of you who keep an eye on Kal's progress through the blog had a wonderful day and you all have a great new year.

Quick Visit

This morning Kallan was required to visit John Hunter Hospital to have some bloods taken then a visit with the doctor.After blood was taken we had a bit of a wait for the results to come through.The doctor came out and said bloods are fine and sent us on our way.It was a quicker than expected visit,not that i'm complaining.

In the afternoon Kal got the chance to meet with his poppy robbie and nanny ruth who haven't had the chance to catch up with kal.After having a play with his cousins,isaac and saskia,kal and I went to bero golf course and played a few holes.He really is enjoying his golf and has said that we have to get in a few more games before our return to sydney.

Merry christmas to you all and may 2009 bring you all that you desire.Thankyou to everyone who has made contributions to our cause no matter how great or small.

tuesday,december 23 ,2008

Kallan's day started with a trip to the motorbike shop with his uncle dave.They went looking for parts for Uncle Davids Ducati but Kal spent the time eyeing off some of the many bikes in the shop.In the afternoon Kallan and I went to the golf course where he purchased a new golf glove and had a bit of chipping and putting practise.Kallan has developed a very keen interest in golf and it's something he really wants to get into when it's all over.Fingers crossed that his operation and the rest of his treatment goes well so that he can still pursue some of his many interests.

Shaylie also had the chance to catch up with a friend that she hasn't seen for some time.She had a sleep over at jessica's house who lives a few doors down and is also one of her soccer buddies.

No rest for Karina who would normally have had today and yesterday off but as is the norm for this time of year the salon is extremely busy and she's been required to work long days as a result

A big few days!

Kallan has been enjoying being a ten year old again. On Friday Kallan had a quiet day in preparation for going to the Jets game that evening. He did get very tired though and at one time dozed off during the game! He must have been tired or how would he manage to sleep through the cheers of the crowd.

On Saturday Kallan again enjoyed the benefits of being 10 years old. He played with his friends Cody and Tyler and then Darren took Kal for a game of golf. They took a golf cart so Kallan didn't have to walk and get tired out. Hmmm....I have no details on who won, I wonder?

After golf, Kal saw a couple of his mates from soccer, Sam and Matt, playing on the oval near-by so went and had a bit of a kick of the ball for a while.

Karina tells me that today Kallan is not doing too well. He was vomiting this morning but hopefully that will pass quickly. Maybe he has just done a little to much over the last few days, who knows! It can be unpredictable. Darren was telling me one that Kallan can feel fine and then all of a sudden feel terrible and need to vomit. We are thinking of you Kallan. Glad you are able to have some fun and hope the inevitable horrible bits pass quickly.

Today Kallan had to make the long trip back to Sydney for his pre-admission clinic. The clinic only took 1/2 hour - bloods were taken and all went well with the clinic.

Shaylie went down for the ride too, when she heard that after the clinic they would stop by the party the clinic was holding for the cancer patients. Darren reports that "shayllie was most upset after lining up for ages for a photo with Santa - there was only a present for Kal". All of us who know and love Shaylie will understand what he means when he says that Shaylie was "...not impressed at all. I know you find that hard to believe". No Darren, we do belive you!

Kallan, we are all thinking of you and are so glad that you have been able to have some fun times around this fantastic time of year. We send lots of love and kisses your way.

A Day of Fun!

Kallan had a fantasic day today. He went to the movies with his school. After the movies he went to the park with the school too. Darren says that he had a huge smile on his face when he was just "hangin' with his mates". How great that must have been for Kallan!

After the events with the school, Kal went fishing with his Pop but the heat became a little too much to handle so they left a short time later.

It is so great that Kallan is able to spend time with friends and family.

Home Sweet Home.

Today Kal was able to visit the kids at school for a while and tomorrow he is going to go to the movies with them. It is great that he can go to a few things a catch up with friends. Speaking of friends, Cody popped over for a visit this afternoon which was great. Kallan is doing really good and enjoying being at home.

The joy of being home.

Kallan is able to come home until after Christmas! I bet he thinks that is a pretty fantasitc present. He does have to return to Westmead for a pre-op clinic for one day though. Kallan looks fantastic, all things considered. Still weak and sick but was smiling and happy. I must say on a personal note that I was so gald to be able to see him and give him a hug. Last time he ws home I wasn't able to due to a cold that I was scared to pass on.

Update via Shaylie.

I missed an update phone call from Darren last night so Shaylie called fill me in this morning. I have no details about how Kallan is feeling but Shaylie did tell me that they may be coming home this afternoon. Darren and Kallan are excited to be coming home but Shaylie wants to stay at Westmead. So, what I can gather is that Kallan will be coming home for a few days but needs to go back down before Christmas.

I wish I could remember word for word my conversation with Shay, but you who know her can add the personality that I cannot convey through my relaying of the story.

Yesterday Darren took Kal and Shay to darling harbour to see the wildlife and aquarium. I didn't hear much about that other than they couldn't see the seals and the Great Barrier Reef section. Shay wasn't sure why but said, "the seals were doing sum'in (something)". I did hear lot about the trip there though. They ended up catching a bus in. Shaylie informed me to stop the bus you had to press a button. I can imagine that she was eyeing that button off if her summary of the trip is anything to go by. She said, "It just went on and on and on and on for hours". Luckily Aunty Peta came to the rescue for the trip back. Kallan's bum was sore from sitting on bus and so Aunty Pete came to pick them up and return all to where they had left the car. Then there was the search for an ATM to pay for parking where they had to walk for ages and ages, hmmm...I wonder if Shaylie was chief wheelchair pusher yesterday on the long search for an ATM?

The trip tired Kallan out but Shay was ready to play when they got back to RMH.

Shaylie informs me that today there is going to be a party and the Eel's are coming. She said that even though she doesn't like the Eel's she is excited to meet them because she has never met a football team before, but she has met other celebrities (whom she then listed). Shay informs me that Kallan is going to wear his Tigers jersey and hat to "stir them up". Shay said she doesn't want to make them mad. I heard Darren in the background say that he would sort them out. Shay then informed her dad that they would sort him out. She then told me, "They are really strong you know!" So Kallan looks to have some excitement today maintaining his loyalty to the Tigers. We'll have to see what happens a little later on. Thanks for the update Shay!

Have a great day Kallan and Shaylie.

The discovery of double-decker birds.

Kallan is feeling a bit better today and was even managing to eat a little. I think he was sharing a lot with the birds too. Kallan told me that he started a feeding frenzy among the birds when he began sharing his cheezles!

Apparently, Shaylie and only Shaylie, is incharge of pushing Kallan's wheelchair. So when Kallan and Darren picked Shay up from school today Shay pushed Kallan down to look at the birds. When they got there, there were a couple of birds pecking at each other. Saylie asked what they were doing and her wise older brother told her that they were "smooching". She was quite concerned that they may have been fighting. Kallan assured her they were only smooching. As Shaylie asked again if Kallan was sure, one bird jumped on top of the other, and Kallan said, "What does that tell you?" Shay still not convinced that all was ok asked what they were doing and Kallan informed her they were making a double-decker bird and that they were "in-love".

Shaylie obviously quite ill...

Darren is concerned about Shaylie and thinks he may have to get her seen by the doctors too. She did not want to go to the Starlight room today - not even once!

More ups than downs on Tuesday, 9 December 2008.

Kallan had a day of ups and downs today, but happily, there were more ups and downs. He is fighting hard and manages to climb over the bumps along the way. He can be feeling fine but all of a sudden need to vomit. He was sad to see his mum have to return to Maitland to work and is looking forward to the prospect of being able to come home for a few days.

We can contrast Kallan's experience at Westmead - while Kallan deals with treatment and nausea Shalylie is having the time of her life! She is staying with Darren and Kallan for the next few days. She brings some fun and joy to the day!

Monday, 8 December 2008

Kallan got out of hospital today. He is still feeling off but is much better but not his best. He has an appointment on Thursday and after that he gets to return to home in Rutherford.

He has to return to hospital on the 18 December for another appointment and then again on the 29 December for his operation.

On a personal note, I, along with my family, are venturing overseas for six weeks. Aunty Annette will take over update details for a while until I can gain internet access. Bon voyage!

Sunday, 7 December 2008

It was a very trying day for all today. Kallan has been really emotional and basically has had enough of feeling like crap.

He did brighten up a little when he met a young girl who had suffered the same cancer as Kallan when she was 10. She is now 17. Darren met her at Ronald McDonald House while having breakfast this morning. She stayed there while having her treatment and dropped in. She asked to meet with Kallan after talking with Darren. She spent about half an hour with Kallan. This young girl featured on RPA - her operation (bone removal, radiation, etc) was done 7 years ago and took 11 hours. Her treatment back then was experimental and she was only the sixth person in Australia to have this treatment. The treatment is now tried and proven.

Nanny T and Uncle David also had a visit with Kallan today. He enjoyed having his back tickled by Nan - at one time she stopped and he asked for her to continue. Must've felt nice.

Another Kallanism

Today I asked Kallan how much weight he has lost now. This is his response.

" The RSPCA weighed me wrong to start with"

He meant the RPA - it was quite funny.

Saturday, 6 December 2008

Kallan had a much better day today. A marked improvement on yesterday. He is still have morphine for his throat and fluids after his round of chemotherapy.

He was able to leave the hospital (momentary) this afternoon. It was enough to have a little break but he was eager (no pun intended) to return to his bed.

Shaylie spent more time in the Starlight Room.

Kallan, Darren, Shaylie and Nanny Carol had a visit from Uncle Willy, Aunty Allison, Chelsea, Aiden and Campbell today. It was nice to see him and have a snuggle with him on his bed. It will be my last visit for over 6 weeks.

An Apology

Apparently Miss Shaylie was most upset that I didn't mention her in the Take 5 magazine article that is going to be published. I indicated that it was an article about Kallan when in actual fact it is about the WHOLE family.

Sorry Shaylie.

Friday, 5 December 2008

Kallan was pretty ordinary today. Everything has caught up with him - throat infection, surgery, delay of chemotherapy and then the start of chemotherapy again. He had bearly recovered from the surgery and then the chemotherapy was started.

He was vomitting a bit as well.

Why his surgery took so long was because the "stuff" around his lines had calcified. Rather than being slimy, it had become hard and required a lot more work to remove it. The doctors had a bit of a hard time removing it all - the reason for the long surgery. The unfortunate thing is that it can happen again. The surgery was done through Kallan's groin.

Shaylie has found two new boyfriends - two FRENCH boyfriends. She spent some time with them yesterday. Bippy, Boppy and Santa Clause were at the house today. Shaylie bopped away with them. I know you aren't going to believe this, but she also spent some time in the Starlight room (again).

Nanny Carol is still at the hospital helping out with the Shaylie and Kallan.

Thursday, 4 December 2008

It was a really long day for Kallan today. He had surgery to clear the blockage in his central line. It is normally a procedure that takes 30 minutes but Kallan's surgery took nearly three hours. He spent a lot of time sleeping afterwards.

Chemotherapy starts tomorrow.

Darren took Shaylie to the movies today to see High School Musical 3.

Wednesday, 3 December 2008

Kallan in on the improve. He is well enough to have surgery tomorrow to fix his central line.

Once fixed, chemotherapy will start again - probably on the weekend.

Celebrity Update

Karina had a call today from Take 5 magazine. They want to do an article on Kallan. They got wind of the story via the Maitland Mercury.

I am not sure when the article will be published but will post it on the blog when the details are known.

Kallan is improving. He has been able drink and eat - although only little bits. He had another MRI today as the others ones weren't too clear and they couldn't even find them.

He spent some time back at Ronald McDonald House today to attend a Christmas Party. He got some fly wheels and accessories.

After the Christmas Party he spent some time "chatting" via web cam with some of his school friends. He really enjoyed it.

Shaylie skipped school today in order to attend the Christmas Party. After the party she spent ages in the Starlight room (again).

Karina returned home for work.

Nanny & Pop had a visit with Kallan today. Carol has stayed in Sydney to look after Shaylie as Darren is looking after Kallan while he is still in the Ward.

Kallan is in a right old mess. He is not well. He looks terrible (Karina's words) with big red, swollen and puffy eyes. His lips are split, and needs his mouth swabbed to keep it clean and germ free as he has mouth ulcers. He can't talk and if he does, he has a husky old man's voice. He has spent the last two days in bed. He is very lethargic. On a positive note, he has not been vomitting.

Kallan takes a lot of medication orally. Due to the soreness of his throat, he is now given this intravenously. His throat is also numbed to aid him in eating and drinking (not that he is doing much of that).

Kallan said this is the worst he has felt during the whole ordeal.

I mentioned yesterday that there appeared to be some issues with his central line. Today Kallan had some xrays which confirmed a blockage in both lines. Things can go in but not out. As Kallan is required to have regular bloods taken, this is a problem. The blockage has been described as a flat straw that has been chewed - things can go one way, but not the other.

To correct the blockage, surgery is required. Surgery can not be performed until Kallan's throat has cleared, and the chemotherapy can not start until the blockage is cleared.

Shaylie is spending the week in Sydney. She got there at lunch time today. After lunch she spent some time doing some Christmas craft. She went to school in the afternoon and then spent a lot of time in the Starlight Room. When she came home from the Starlight Room she had a bad of goodies/prizes that she had won.

Sounds like she is having fun.