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Friday, October 31, 2008

Friday, 31 October 2008

Kallan didn't start the day off well. He was vomitting a bit in the morning but came good around lunch time.

Kallan spent the day in the clinic having fluids prior to his next round of Methotrexate. The Methotrexate commenced earlier this evening. He is coping well with it so far.

Darren said that Kallan's hair is getting very thin. As Poppy Robbie would say, all good men are bald, the rest they put hair on!

Thursday, October 30, 2008

Thursday, 30 October 2008

Kallan has been feeling pretty good today. He had a quiet day and spent some time with his birds at the avairy.

At Westmead Hospital they have a Starbucks cafe. Darren has taken a liking to the iced chocolates. Kallan enjoyed (all) of his father's iced chocolate!

Good on ya Kal.

Wednesday, October 29, 2008

Wednesday, 29 October 2008

Kallan had a really good day today. Kallan and Darren visited the hospital today, not for treatment, but to visit with some reptilian creatures from the Reptile Park. There were snakes, turtles, lizards, a massive frog chameleon, and other things. There was even a dingo.

Kallan wasn't able to visit long with the creatures as he had to have a CT scan and xrays of his arm. This was required for measurement purposes to allow for a customed made prosthesis to be made to fit his arm after his operation.

After this, Kallan and Darren went window shopping at Westfield Parramatta. (Can you imagine it, two guys shopping together - how funny).

Tuesday, October 28, 2008

Tuesday, 28 October 2008

Kallan was able to go home today. His bloods returned good results which is the cue for him to return home.

He also was able to have a visit from Aunty Leyanne and Uncle Steve.

This is what the boys got up to ...




Kallan's hair has started falling out. To avoid a little distress, it was decided to clip it off. Darren and Steve went out in sympathy/support for Kallan.

Kallan was a little upset at first about losing his hair but soon warmed to the new "do".

Monday, October 27, 2008

Monday, 27 October 2008

Kallan had fun with "Blondie" last night - at Darren's expense. Kallan and Blondie were wetting Darren with filled syringes. They were telling Darren that it wasn't water but "wiz" in the syringe. I can just hear Kallan's giggle right now.

Kallan spent the day in bed today. He over exerted himself yesterday due to having visitors. Visitors are few and far between that he "packed" a lot into the day as he wanted to make the most of it and didn't want to miss out. I was one of those visitors. I often asked Kallan if he needed to rest and that I wouldn't be offended if he needed to. His reply was that he was fine. Karina made him have a rest after lunch.

Being in bed didn't stop school. The teacher came to him! (No chucking sickies there!). He also enjoyed a guitar lesson.

Kallan is still in the Ward and has not returned home. The drug levels are still to high to release him to home. They are hoping that the levels will return to normal tomorrow.

Sunday, October 26, 2008

hotmail.com

As another means/way to communicate with Kallan, I have created a hotmail account for him. His email address is:

kallanegar@hotmail.com

Father and Son

The photo speaks for itself.

Sunday, 26 October 2008

I got to visit Kallan today!! He looked fantastic. He was at the bird avairy (again). I think this acts like a therapy for him. He was happily explaining and naming all the birds to his cousin Chelsea. Pop has taught him what the types of birds are.

We spent some time in the playground where they restled a crocodile and had some fun on the pirate ship. Kallan is a bit restricted as he has potassium and fluids constantly "fed" to him. You may notice from some of the photos.

After some playtime, we had some lunch. After lunch we had another very short play as Kallan was getting tired (despite him saying he wasn't). Kallan was taken back to his room for a rest.

Kallan was popular today - he also had a visit from Jo, Mick, Shannon and Hayley Threlfo. What a busy day.

Karina also returned to spend a few days with Kallan until she is due at work again. Shaylie has decided to stay back in Maitland this week.

World Wide Love

Kathryn (Kallan's Aunty who lives in America) has been wanting to make Kallan a special comfort blanket for him while he is in hospital. She has spent many hours, at numerous stores, searching for the best deal and the perfect fabric.

While shopping a lady commented on the fabric Kathryn had chosen. Kathryn explained what it was for and who and why. She had to again repeat the story while purchasing the fabric.

The first lady (who was still shopping) came over and said, "I just really want to give you some money toward your blanket. I really want to feel I have helped in some way and please let your nephew know we will be praying for him and hoping for a quick recovery."

Kathryn was really touched and graciously accepted her offer.

Both ladies asked for Kallan's blog address to follow along and so they could see the finished blanket.

Kathryn thought it was just so nice that people are willing to help complete strangers and can feel that concern and love for people they have never met.

Saturday, October 25, 2008

Saturday Update

Kallan has been feeling so good that he asked to go back home. What wonderful news.

He has handled the Methotrexate so much better than the previous two drugs. Darren said that he did not suffer anywhere near like he did two weeks ago.

Kallan said that he is looking forward to visitors. Again, what fantastic news.

It's Started

Kallan woke to a fair bit of hair on his pillow this morning. Reality bites (and sucks).

Saturday, 25 October 2008

Kallan was not feeling the best this morning. He was still sleepy and lacking energy. He has not vomitted apart from a few times in the night.

This afternoon he picked up (and no I'm not talking about a girl). He was feeling much better and even went outside and had a look at the birds. In the grounds of Westmead Hospital they have a bird avairy, amongst other things, for the benefit/enjoyment of patients and guests.

Kallan has also had a play on his PSP and is now watching WWE - typical boy.

Friday, October 24, 2008

Friday Update

Kallan was moved from the Clinic to the Ward around 5 pm tonight. He has his own room.

The administration of the Methotrexate takes around 4 hours. 20 hours later, Kallan is given another drug which acts like an antidote. As the chemotheraphy kills good and bad cells, this antidote tries to help in the recovery of the good cells.

Kallan has vomitted whilst having the drug. He is really exhausted but has managed to fall asleep.

Friday, 24 October 2008

Kallan was allocated a bed for his Methotrexate today. At this stage he is still having fluids put through as his urine has to reach a cetain acidity level prior to the introduction of the Methorexate.

It has been a very long day. Kallan has been able to fill his day with playing his new PSP - thanks Uncle David. While Darren has oocupied himself with a book.

Guess Who



Check out who came to visit Kallan today ... Lleyton Hewitt!!!!!

Thursday, October 23, 2008

Fundraiser Update

A lot of "behind the scenes" stuff is being undertaken in order to organise a fundraiser/benefit day for the Egar's.

The plan is to have a smaller fundraiser before Christmas. Kallan will not be able to attend on this occasion. A much bigger benefit day will be organised in the New Year to allow Kallan to attend. A date has not been determined as yet as it TOTALLY depends on Kallan's ability to attend.

WATCH THIS SPACE.

Thursday, 23 October 2008

Kallan had a really good day today. He felt so great in the morning that he was able to go to a movie with Dad, Shaylie and Uncle David.

David travelled to Sydney to pick up Shaylie and bring her back to Maitland. Kallan had a bit of a cry when they left.

Kallan is due to start his Methotrexate tomorrow. At this stage it is not definte as they do not have a bed for him. It will be confirmed tomorrow.

Kallan said he can't believe what people are doing for him. It is because we LOVE him.

Wednesday, October 22, 2008

Wednesday, 22 October 2008

Kallan has settled into a bit of a routine - well the last two days anyway. He has been good today. He went to school this morning and napped in the afternoon.

Tomorrow this routine will change. All going well, Kallan will have his Methotrexate. This is all subject to bed availability.

Karina returned to Maitland for work today. It is really hard for her to leave Kallan and Darren but to put it simply and honestly, they need the money. All Kallan's medication is to be paid for and is not covered by Medicare. As detailed before, Kallan is required to take a variety of medications that do not come cheaply.

Shaylie will probably also return to Maitland tomorrow as Kallan prepares for his treatment (again).

The Globe Trotter

Kallan, at school yesterday, told his teacher that he went to Hong Kong the other day. The teacher (confused) looked at Darren. What Kallan meant was that he went to Cabramatta. Funny bugger.

Tuesday, October 21, 2008

Tuesday, 21 October 2008

Kallan had a really good day today. He and Shaylie went to school. He must have received a shot for the allergy to homework! Kallan got bored and wanted to come home but Shaylie loved it.

Shaylie is also loving spending time in the Starlight Room. I think it has something to do with the Wii.

Karina returned to Maitland this afternoon for work. Kallan was extremely upset that she was leaving. He settled after a while and is very tired.

Monday, October 20, 2008

Pictures



Here are some pictures of Kallan and Shaylie from today. Despite the severity and complexity of his illness, it is so nice to see a smile on his face.

Monday, 20 October 2008

Kallan started the morning off great - the best he has been so far. (Did that have something to do with Mum and Shaylie being there?).

Carol, Phil and Noni had a visit. Everyone went to Cabramatta for a little while. Kallan fell asleep in the car on the way and upon waking didn't feel the best. Darren piggy backed him around for sometime.

Shaylie has decided to spend the week in Sydney. She has enrolled in classes which starts tomorrow. All going well, Kallan will join her.

Today also involved a meeting with the oncologist. Kallan will be starting his Methotrexate on Friday - a week earlier. In an attempt to boost Kallan's red blood cells and platelets quicker, Kallan was given an injection ealier in the week. This has worked really well which has allowed for the Methotrexate to be administered earlier than originally planned. It really is a day by day process.

Although Karina was only back in Maitland a few days, she really noticed the weight loss in Kallan. This is completely normal. As Kallan already had a little meat on his bones, he won't be hit as hard as someone who may have been slimmer.

Sunday, October 19, 2008

Sunday, 19 October 2008

Kallan was really glad to have mum and Shaylie back "home".

He started the day off feeling extremely low in energy. Kallan managed to have something for lunch and then fell asleep. Upon waking he was feeling really sick. He kept rushing to the toilet but has been unable to vomit.

Kallan had a cry this afternoon as he feels he is missing out on things. It didn't help that his soccer presentation was on today.

Saturday, October 18, 2008

Saturday, 18 October 2008

The day didn't start off to well for Kallan today. He was vomitting and feeling pretty lousy. He managed to keep water down but didn't have an appetite for eating.

By lunch time he had improved.

As Karina has been back home for a few days work, Kallan had a big cry after speaking with her. He said he misses everyone and wants to come home. Darren explained to Kallan why he was there and that it would be all worth it once his treatment had been completed.

He has now calmed down. Darren feels that he just need to let it all out.

Treatment Correction

I got a little confused with Kallan's treatment. I thought it was days rather than weeks.

His "protocol" - as his treatment is referred to, is done in cycles. Each cycle consists of 5 weeks.

Week 1 - Doxorubicin and Cisplatin are given on days 1 and 2
Weeks 2 and 3 - Kallan's red blood cells and platelets have to regenerate/increase
Weeks 4 and 5 - Methotrexate

The administration of the Methotrexate will only be done if Kallan's red blood cells and platelets have risen enough for him to cope with.

Kallan is to have two cycles of this and then his surgery. A definite date has not been given, as it is all determined by Kallan's responsiveness in blood cell regeneration.

I think this is correct. It is all so confusing and so mind boggling to even comprehend.

As well as the above, Kallan is required to have numerous blood samples taken each day to test his levels. He is also on a number of pain relief and anti-nausea medications. Due to his vomitting he also development an infection which required a further medication.

During various stages within Kallan's cycle of treatment, all his bodily excretions (vomit, poo and wee) is to be collected as what goes in must come out. One of the drugs he is on has to be completely out of his system before they can administer the next drug.

What a nightmare.

Friday, October 17, 2008

Mouthwash

Due to the medications that Kallan is on, he is required to wash/rinse his mouth out 4 times a day. If he doesn't he is prone to nasty throat/mouth infections. One of the medications also can leave a metalic taste in his mouth. All preventive measures.

Another Kallanism

Kallan is required to provide regular wee samples to measure his fluid intake as well as output.

While in Ronald McDonald House he asked Darren if he still had to "catch" his wee. Darren said no. Kallan responded with "I've been hanging onto this for half an hour". He was busting.

What a Charmer

Kallan was watching some tv and an add for "Australia's Next Top Model" came on. The following happened:

Voiceover: - "are you Australia's next top model?"

Kallan: - No, but my mum is.

Sweetness.

Friday, 17 October 2008

Kallan, although lacking energy, has had a much better day today (overall). He has had a few vomits, but has managed to keep some food down as well. Poo's are continuing courtesy of some concoction he is taking.

Darren and Kallan also met with their Specialist, Dr Stalley. It is unsure as to when Kallan's surgery date will be. Kallan's availability for the fundraising/benefit day will be determined once a date has been confirmed for his surgery.

Thursday, October 16, 2008

Thursday, 16 October 2008

Kallan finally had a bowel movement. Gross I know, but hey it is an achievement. Not long after this, he started vomitting again. He was able to leave the hospital today and move back "home" - Ronald McDonald House.

More Kallanisms occured today. Darren was talking on the phone and Kallan waved to someone. When Darren asked who he was waving at, Kallan, motioning with his head, said "Blondie". Blondie is a nurse. What a flirt.

Karina returned to Maitland and was able to work today. She is also working on Friday and Saturday. She will return to Westmead Sunday morning.

Wednesday, October 15, 2008

Leaving a Comment

A few enquiries have been asked as to how to leave a comment. You need to create a google account (no charge) to post a comment. Hope this helps.

Further to the above, I have just changed the set up slightly to allow anonymous comments. If you select this option, you may not need to create the google account - i think. Just leave your name so the message can be passed on.

Fundraising Update

A major fundraiser is being planned to raise some funds for Karina and Darren. A date has not been confirmed at this stage. This date will be determined by Kallan's ability to attend. He currently has a strict medical regime, and his Doctor's will have to confirm/allow his release to attend the fundraiser.

A number of enquiries are being made as to the best way to deal with the funds raised. We want Karina and Darren to benefit in the most economical way possible with it all being legitimate. This may involve the creation of a charity or the utilisation of an existing charity.

Pending the outcome of our enquiries, and should the fundraiser be some time in the future, it is hoped that a bank account can be created prior to allow for dontations/contributions to be made.

Contact Details

For anyone wishing to send some well wishes to Kallan, he can be contacted at the following address:

Ronald McDonald House
Post Office Box3515
PARRAMATTA NSW 2124

Some "Kallanisms"

As Kallan will miss this term of school, an Educational person came to visit with Kallan to suggest signing up for some lessons. Kallan's response - "No thanks, I'm allergic to homework".

Also, as Kallan has been constipated, a nurse asked him if there had been any "movements". Kallan's response - "No, but I nearly blew a hole in the bed the other day".

Told you he had a great sense of humour.

As a note, I forgot to mention that the Orthopedic Specialist that Kallan saw said that he had a brilliant sense of humour and that it would see him a long way in his recovery.

Wednesday, 15 October 2008

Kallan has had a much better day today. He has not vomitted but he remains constipated due to not eating since Sunday.

As mentioned previously, Kallan's hearing may be affected by the chemotherapy. To monitor the situation, Kallan is required to have regular hearing tests. His first one was today.

Kallan may even be able to stay with Mum and Dad at Ronald McDonald House.

It has been suggested that this may be the worst Kallan gets as his initial dose was the heaviest dose. Here's hoping.

Tuesday, October 14, 2008

Tuesday, 14 October 2008

Today Kallan is really drained, has no energy and is tired. He still has not eaten and still is experiencing stomach pains. He has, at the time of message, not vomitted.

Kallan's red blood cells and platelets need to rebuild.

This is all completely normal after chemotherapy.

Our Brave Boy

Nursing staff have told Darren and Karina that Kallan is a strong boy and he is coping with the chemotherapy very well as it is the worst kind of chemotherapy to have.

Karina and Darren

As you can imagine, Karina and Darren's world has been shattered. Not only are they worried about Kallan, but they also miss their Shaylie. (Shaylie is in good hands and has numerous family offering to take care of her).

The financial loss is also a major concern to them both. Karina and Darren have not worked since learning of Kallan's illness. Both their employers have been wonderful and have allowed them the time, and space, to deal with this turmoil.

It is anticipated that some fundraisers will be organised to aid Karina and Darren with some financial assistance.

They both have cried "buckets of tears" but seem to take it day about.

Karina and Darren have a new (temporary) home, Ronald McDonald House. Karina was under the impression that when she got told she could return home, she thought it was her home at Rutherford, but no, they were referring to her "new" home - Ronald McDonald House.

The Effects of Chemotherapy

Kallan hasn't coped to well with the chemotherapy. He has been vomitting and his stomach aches. There are a number of anti nausea medications available. It is a bit of "trial and error" to see what works for Kallan.

Kallan will lose his hair.

His shoulder does not hurt as they doubled his dose. If this didn't work, he would have been given morphine.

Kallan cries out in pain and it is heart wrenching to hear. He also questions why it had to happen to him and that he can't do it. Poor little darling. I would so love to give him a cuddle.

Saturday, 11 October 2008 - Chemotherapy

Prior to commencing on the various chemotherapy drugs, Kallan was flushed with fluids. This is a preventive procedure in order to protect his kidneys from damage and problems. The chemotherapy drugs also has the ability to affect Kallan's hearing and may leave him sterile. The doctors feel that as Kallan is pre-pubescent, he may be ok.

Kallan also started on anti nausea medication prior to the introduction of the chemotherapy.

The adminstration of the chemotheraphy is done in cycles. A cycle is over a 5 week period.

Day 1 - 2 types of drugs are given - Doxorubicin and Cisplatin*
Day 2 & 3 - no drugs - fluids are flushed through
Day 4 & 5 - another drug - Methotrexate*
Day 6 & 7 - rest to allow Kallan's red blood cells to rebuild

Kallan is also given an extra drug to help build his bone marrow.

* Karina was able to recall the names of the medication without hesitation and like she was talking of every day pain relief. How quickly things become familiar.

Kallan's Treatment

Kallan's treatment involves 12 weeks of chemotheraphy. At the completion of this, his humerus bone will be removed, radiated, and replaced. Kallan will then continue with another 6 months of chemotherapy.

Upon reviewing his treatment schedule, surgery was to fall due on Christmas Day. In order to prevent operating on Christmas Day, his treatment has been fast tracked. All going well, surgery is now scheduled for December 18.

Karina and Darren have been told that Kallan's treatment is not experimental, but is tried and proven.

Sunday, October 12, 2008

Shaylie

Poor Miss Shaylie.

She has been staying with various family members this past week and has been spoilt - why not. Aunty Annette took Shaylie to visit with Kallan (and Mum and Dad) on Saturday. I think she enjoyed catching up with everyone despite the overwhelming situation.

Isn't it great that family (and friends) can pool together in times of crisis?

Friday, 10 October 2008 - Central Line

Kallan was taken to surgery to insert a central line straight into his jugular vein.

Their are two types of central lines. One is contained within the body and can not be seen. Each time medication is administered, a needle prick is felt and can be a little painful. The second one, which protrudes from the body, and has three lines, has no pain upon administration of medication. The entry area will have to be cleaned on occasion. This is the one Kallan has.

Upon insertion of the line, Kallan was transferred from Surgical Ward to Oncology Ward in preparation for his chemotherapy.

Tuesday, 7 October 2008 - Biospy Day

A PET scan was completed this morning. This pinpoints the exact location of abnormal cell activity within Kallan's body.

This afternoon involved a biopsy. An incision about 6 cm long was made near where his arm meets his chest. The biopsy determines what type of chemotherapy is used and what programme of drugs are used.

Kallan became anxious prior to his biopsy surgery. He was scared.

This anxiousness continued while in recovery. He was given some morphine where he fell asleep and woke quite normal afterwards.

Kallan was to transfer to Westmead Children's Hospital after his biopsy. Due to not recovering very well, he was kept at the RPA and transferred to Westmead the following morning.

Friday, 3 October 2008 - Specialist Appointment

Today involved a trip to the Royal Prince Alfred (RPA) to meet with the Specialist.

Carol and Phil, Darren's parents, were able to drive them to the appointment.

Prior to seeing the Specialist, Kallan had another CT scan to check his lungs. This was needed as normally bone cancer is a secondary cancer which means the cancer developed somewhere else in the body. The CT scan cleared Kallan's lungs of any cancer. The cancer is contained within the one bone - right humerus. Lets be thankful and extremely grateful.

While the Specialist was meeting with Kallan, Darren and Karina, he confirmed that it was cancer. He was 99% sure and has been wrong in the past, but very rarely. At this point Kallan cried.

The Specialist advised that the cancer is treatable and cureable. He also indicated that they had got it early. He told Kallan that he would lose his hair and that he will have to fight really hard throughout his treatment.

Kallan was told that his sense of humour would help him greatly in his recovery.

My Shoulder Hurts

Kallan had been complaining off and on about having a sore shoulder. Being a kid, and such an active one, not one incident could be identified as to the cause.

Once the pain became constant and progressively worse, to the point where it was affecting Kallan's ability to move his arm, a doctors appointment was organised to investigate. Xrays revealed an abnormality in the bone.

Further, and immediate, investigation was organised. Kallan endured many procedures, namely bone density scan, further xrays and a MRI. These tests identified the *osteosarcoma.

As you can imagine everyone's world turned upside down that day - 23 September 2008.

The next day Kallan had to endure a CT scan in the morning and saw an Orthopedic Specialist in the afternoon.

* This cancer is a rare cancer that affects usually boys between the ages of 10-25 when they do the majority of their growing. It seems to affect the largest bones in the lower extremity (femur and tibia) and the upper arm bone (humerus). Kallan's tumor is in his right humerus and is about 6cm x 5 1/2cm in size.

About Kallan

Kallan is the oldest child to Karina and Darren Egar. He has a younger sister, Shaylie (8).

Kallan is and has always been a delightful and happy child. He very much enjoys and participates in a number of sports, namely soccer, indoor soccer, rugby league and tags along with Dad at times to play a round of golf. He has also recently dabbled in Break Dancing.

He has a vivid imagination and is often found playing with tigers, leopards and other exotic animals. He also enjoys wrestling on the trampoline with his WWE "buddies".

Kallan has a beautiful, but cheeky smile, which is usually accompanied by a little giggle. I love him to bits.