Yesterday

Yesterday it was 3 months.  12 weeks exactly, it was even a Tuesday, which was the same day Phil died.  It's strange how quickly and slowly that time goes by.  He is very much missed.  When people talk about going and seeing Mel and Jen in Warragul it sounds so strange to me...cause they aren't going to see Phil as well any more.  Or when people ask how many siblings I have, I automatically say six...but if the questions get more detailed...like ages etc... I don't really know where to go next. Don't want to make some poor person feel really awkward or end up in tears during a simple ice breaker conversation. 

Mum and Dad are away till tomorrow having a holidays which is great.  I was away at coffee shop but haven't been well so have come home.  Mel and Jen have been manning the fort at home and are working summer jobs packing school books.

Kris x

Today last year....

Today, exactly one year ago, we went to the Carols rehearsal at the Myer Music Bowl.  I'm glad Mel took her camera, even though Phil was giving her a hard time about her size! (see photo 3).

....the goose is getting fat....

I caught up with a couple of different friends last week I hadn't seen since Phil died.  Both of them, who didn't personally know Phil, expressed in their own ways how sad they had been when they received word that Phil had died.  It was strangely very comforting to me to know that other people were sad too, like actually really sad.  Sad enough to go home from work.  I think it's hard to know what to do, people don't want to upset us, or make it seem that their pain is the same, but it was so nice to see someone else sad, (I think I had started to think I was making it up, or overreacting), because it is actually sad, whether someone knows Phil or not it is still sad that someone had to suffer like he did and that we don't have a little brother here with us anymore.

That aside, Christmas has practically arrived, our tree is up and some of the normal Christmas things are happening but the mood isn't quite the same.  Not sad as such, but not the busy, crazy, intense time that it usually is.  It's kinda like Christmas has taken a chill pill.

I made some photo books on my computer with pics of Phil for our family and they arrived in the mail yesterday so that's something nice.

Nothing else to say, other than the fact that a random hawaiian christmas carol that noone my age except me and my siblings would know is playing on the radio and Mel and I were singing along very loudly while writing this.

Love Kris

P.s. I finished the essay! Melinda is officially a nurse, starting work in Melb in April.  I'm doing a coffee shop (similiar to beach mission) at Wye River from after Christmas to start of January and then will be in QLD with Renay till start of college.  Everyone else will be having a bit of a quiet one.  Also...Jenny got an A in her grade 6 piano exam, an achievement!

gardening...

I'm back in Warragul now, with one last essay to go.  Everyone else is on holidays and my motivation levels aren't particularly high.   Anyway from my "study area" (the dining room table) I can see Dad picking raspberries in the back yard and it reminded me of this photo of Phil helping Dad with the gardening.

When I got home the other day Melinda and Dad had berry stains on their clothing.  Mum, Dad and Mel had all been picking berries together and Mel was reminiscing that she didn't have anyone to have berry fights with anymore (it was a memorable past time of her and phil's)....  seconds later she was hit by an overripe berry thrown by Dad and it was on. 

Kris x

2 months today (well ten minutes ago!).....

Today (29th) is two months.  Strange. It's not like there is anything different to do on the "29th" of each month than any other day.  But more than anything it makes me realise how much and how little time has gone by.  These last few days have been really tough.  Miss him a lot. 

Kris x

Wow...nearly two weeks between posts.

Just looked at the blog, feels like a while since anything has been put up.

Nothing has changed in case you wondered.  Phil hasn't suddenly turned up somewhere, and I doubt any of us is missing him any less.  I'm not. I think my missing grows bigger as the time gets longer.  It hasn't even been two months yet...it feels like so much longer on some levels.  But then we tell stories that "just happened the other day" that were months ago....time is strange, so slow and yet so fast. 

Our family holiday was a good time together, but I definately noticed Phil's absence, we'd sit down for dinner or to play a board game and I'd be waiting for someone else to come before we could start....oh yeah, he's not here.  Ouch. 

I think I have been waiting for something to happen that is going to make me feel better, but was reminded by a friend the other day that I'm not suddenly going to feel better.  It's a strange process, not sure how anyone maps where they are at, cause I don't think it's that easy to figure it out.   

Kris x

Friday the 13th of November

Yesterday 18 years ago Phil was born.

Dad had snapped his calf muscle and was on crutches, so Mum, in labour, carried her own bag into the hospital.

I remember waking up early in the morning or very late at night (it was dark) and finding my Dad's parents, Grandma and Grandpa staying over  I remember standing behind our blue chairs in the "extension" (I thought that was what every child called their playroom), and them telling me that I had a new little brother called Phillip Christopher.  I must have been in grade 2, cause I remember going to school very excited and telling my class.

I also remember that he was 51 cm long.

I remember walking down the hall of the Mercy hospital (on the materity ward), the corridor was on the side of the building, so wards on one side of the corridors and windows with sunlight streaming in on the other, and I remember Ben and I being glad Phil was a boy, because it meant Ben wasn't screaming!

I remember he was very red (like most babies), and I was there when he had a bath after his first dirty nappy, ewww....first ones are really gross!!!

Phil's 18th Birthday

Hey,

Today (the 13th of November) would have been Phil's 18th birthday, and we all miss him heaps. We're going away to join the rest of the family in Mt Martha, which we've all been really looking forward to. Its going to be great, remembering Phil and spend lots of family time together, Mum has baked her own croissants for our breakfast, then it's on to a day of mini-golf and lunch with Gran and Pa at Rye and many other Guilford adventures.

Thanks everyone for all your love and support.

Ben and Lovy oxo

Holiday coming up.

This photo popped up on my computer yesterday.  Milo is really big now, can't even see him fitting in that chair all by himself.  He was a present for Phil from the Make A Wish Foundation. 

Phil receiving his probably all time favourite present.  It's this kind of gun that shoots balls of air...lots of fun, very useful for annoying people, and it is still going strong.  I love the facial expression.

We are going on a family holiday to Mt Martha from tomorrow till next Sunday, which should be a good time to get away.  It's Phil's birthday on Friday so it will be good to be together as a family for that. 

Melinda texted me to say that she had just finished her last uni assignment ever yesterday, and yesterday Sherryn had some of her exams, no more till Jan or Feb for her.   Jenny has a piano exam the week after family holiday and I have two then as well. 

Not really sure how people are going, probably cause I'm not sure how I am, and combined with the urgent need to study I haven't got time and energy to think about it!  Can't seem to multitask much these days.  I'm either sad, or I'm getting things done. 

Anyway I should be studying right now!! 

Kris x

Reflection from Phil's teacher

This is an email that I was sent during the week from Phil's teacher Jenni. Kris x

As you know, I was Phil’s Year 6 Core Teacher at Chairo. He commenced Year 6 as a cheeky, up-beat young man. It was difficult to share his diagnosis with the class at the commencement of Term 2 and I think that as a class we drew closer to Phil through prayer.

I remember Phil making a visit to the class as he (and for memory your mum) were on their way to the Children’s Hospital for the initial surgery on his leg. Prior to his visit I had tried to explain to the other students the procedure that Phil was having undertaken, a difficult concept for 12 year olds to fathom. Anyway, when Phil arrived, we had both classes of Year 6 in the one room; Phil was open to questions and answered with a mixture of maturity and cheekiness.

Of course, the inevitable question was asked; ‘How do you feel about having your leg chopped off?’ I, for one, was stunned into silence as this mature response was made; ‘If God needs me to have a artificial leg for me to complete the work that he wants me to do; then I am happy to go ahead with the surgery.’ WOW! What a witness.

Through all my contact with Phil, that is what I will always remember; his desire to live for God, regardless of the circumstances, his passion for God’s creation (both natural environment and humankind alike) and his interest in all the people that he met. He remains my HERO, an example of who I am in Christ and how I should reflect God and His love in all that I think, say and do.

4 weeks

Also known as one month. Already a month? Or only a month?
I wonder if it ever starts to make sense?
I'm almost finished my degree, and last week I found out where I got a job for next year. It made me cry. I just wanted to share it with Phil. He loved to tease me about being a nurse (among other things!). I knew he was proud of me though.
We got our doorbell fixed the other day. For about the last 15 years it has made a strangled once-musical noise. The story goes that someone came to fix it, said he'd come back with a part, and never returned. Phil didn't get to hear the new doorbell.
These things are strange. My phone will beep, and I'll remind myself it's not Phil asking when I'll be home. I can't go chill out with him, or tell him that funny story I know he'd love. So instead I just cry, and miss him a lot.
Melinda

Phil's facebook.

We decided to deactivate Phil's facebook today.....  there is a new side panel that suggests people you haven't written to for a while.  Phil's face popped up suggesting that both Mum and I should reconnect with him.......  this is one of the album's Phil had up...a rafting trip with Ben...I like the annotations that he wrote to go with the pictures.  Kris x

Ok so heres the story. Ben and i decided we wanted to do something a bit different on a camping trip. So we built a raft. It was made of a ply board and pine box, parts of an old bed and truck inner tubes. We even had camp chairs mounted on it for a bit of extra comfiness.

We paddled around for the first day and discovered that it was incredibly stable. So we went back to shore grabbed the gas stove and some sausages and cooked dinner in the middle of a lake.

The next day we decided to mount the sail...which was a complete and utter disaster. Then we decided to try to paddle to a point that looked about ten kilometers away. It took about three and a half hours to get there. Then we walked back to the campsite to get the car to pick up the raft. It turned out that our "10" kilometer adventure was more like a much less impressive 2.

 

Today is Dad's birthday. Lots of yummy food, Phil would have enjoyed it.

I remember when Phil....

I changed my initial title for this blog...at first it was "Remembering Phil".....It's funny, well more strange I suppose cause when I typed the words "Remembering Phil..." it means that he's gone...and I still don't think I've quite realised that yet.

While we are finite humans when people are alive the potential to create memories and have pictures taken seems infinite.  But as soon as someone dies, that number doesn't grow anymore... in fact it feels like it shrinks as you forget things....

So I thought we would start a section on this blog called I remember when Phil, where we (that's you included), can post memories of him.....  just add a comment with your memory to the bottom of this post.  Feel free to write more than one....or to come back randomly and add a new one you remember!
If you have trouble posting comments, email them to phillingyouin@gmail.com and I'll put them up.

They don't need to be long.... 

Here are two that popped into my head:

-I remember when Phil was little and he couldn't say my name properly (Kristen is particularly difficult), he called me Kissn.

-I remember when Phil had an accident involving putting a spoon almost right through his tongue....which is why he called lollies wowwies for most of his primary school years.

Kris x

the zoo...

On Saturday some of us (Mum, Dad, Mel, Jenny, Renay and I) went to the Zoo.  The bears were really active and it reminded me of this day.

....17 days....

It been about 17 days and about 11 1/2 hours, in some ways that is a long time, it's over half a month, which is the same as more than two weeks, but it feels like no time has passed at all to me. 

Friends I have come to know on this journey have a blog they started for their son, Ben, who passed away from cancer last December.  It was their blog that motivated me to start this one. When I read back to the posts that were written by his parents and family last December the same words want to come out of my mouth, but that would be plagiarism.... :)  But reading their thoughts and feelings gives me some idea of where to start, what to do next, and also the fact thtat it won't sort itself out overnight....  It also gives me some insight into the brains of my parents (as most of the posts are written by Ben's mum and dad, Lindy and Chris).  Anyway they shared the link to this blog on their blogspot, so I wanted to do the same.

To go to their most recent posts... click here.
To have a look at December click here.
It's nice to have other people to share the journey with, meaning you, and also people who are as Lindy said "cancer companions", people who are on a similar journey to us. 

Kris x

Finally!!! All about eggs....

I hope that this works....so youtube only lets you load clips that are less than 10 minutes... so I cut the doco into 3 sections..worked like a dream.
Here they are,  the first one is short, the second two are longer.  Hopefully it works well this way (also the file size is HEAPS smaller than the other way).

(for any computer nerds out there...the reason that the audio wouldn't sync was that the quality wasn't good enough..... to fix that involved making it too huge for anyone to watch!...well as far as my small brain could gather)

Enjoy!  (I watched again today, very amusing).

all about eggs problems...

Kris told me she'd put the video up so I had a watch, and found that the sound was out of sync.  I've removed the link for now, and Kris and I will have a fiddle and try to figure it out and put it back up for you all as soon as we can.
Making All About Eggs was such a lot of fun.  I would come home tired from uni and Phil would pester me until I would agree to work on it for a while that day.  I'm so glad we got it finished, it is such a wonderful memory to have of Phil, and some of the great times we had together. 
Mel

All about eggs...

I bet your wondering what this post has to do with anything.  Well, let me enlighten you.

I feel that I shouldn't even be writing this post at all....it should be Melinda.

Melinda, apart from putting up with fat jokes from Phil, has a fantastic sense of humour.  She and her friends over the years have created and filmed documentaries -all about leaves,  all about toothpaste, all about books, all about tropical tree eating seals.  The most recent creation earlier this year is "All about Eggs",  featuring Melinda and Phil.

It is a large file as it is a 20 minute film, but as it was only made earlier this year I thought it would be nice for people to see.  It is Phil when he was well, hopefully how most of you remember him. 

I put it as a movie here, but I think it might slow things down to much....so if you have time, click on this link and check out Mel and Phil.

Click play on the movie, and then after some of it loads it should start..... (it will take a while, i recommend a tea break or a hang the washing on the line break (for the men of course)), that way it won't keep pausing all the way through.

Kris x

The strange thing....

When we started this blog in early February it was because we knew Phil was terminal.  Not that those words actually ever make sense to anyone.  It was interesting blogging on a number of levels....

a) Phil was known to read the blog...and I think he has even posted on it once.  In July after he came back from hospital after his stroke he read the blog, hopefully not the posts from mid-June when he nearly died, but we'll never know.

b) It's hard writing or talking about the fact that someone is going to die.  In fact I don't think we every actually wrote on the blog that he was.... Melinda and I cringed every time we typed it and then deleted it again.

The question of "How's Phil?" over this past year has been a tricky one....cause whatever the answer it was inside the parameters of someone who is dying (at a faster rate than the rest of us),  so "Yeah, Phil is really well at the moment.", didn't actually mean the same thing as "Yeah, Jenny was sick last week, but she's better now", but knowing whether the people who asked the question understood those parameters or not was an entirely different question all together. 

 c) Going with that, almost the same thing is the hope that people can read through out polite language to see what is actually going on that we aren't writing/talking about.....(which isn't always really a fair assumption)... I'll give you an example.....  In the blog this year, we never talked about Phil's treatment e.g. Chemo... that's because he wasn't treated.  Not this year.  He had a little bit of radiation at some point this year and an tablet chemo at some point but not to try to cure him.   He was being treated as that horrible word a "Palliative"patient.

According to the dictionary on my mac computer - Palliative is an adjective and means:  relieving pain or alleviating the problem without dealing with the underlying cause.   

Not intended to cure, but to keep comfortable. 

Not sure this post made much sense at all, but anyway, I should be sleeping.

Kris x

reality and small shirts...

My phone beeped a little while ago, and I thought, it's Melinda telling me that Phil's back and it's all a dream.  He's looking forward to seeing me on the weekend.

On a lighter note...slightly humorous....

Ben was putting on his suit for the funeral the other day....and his shirt wouldn't fit, it was too small........ Phil was cremated wearing the suit he wore to Ben's wedding...but wearing Ben's shirt not his own....woops.

Kris

One week and one day.

It's been over a week now.  I don't think it has really sunk in yet.  Ben and Lovy went back to Melbourne on Sunday and I'll be going back to college this afternoon.  I suppose that is when reality will really start to set in.

I'm uploading the copies of the program the eulogies I have so far (one more I haven't got a copy of yet).

I have also made the tribute video into a movie file so I will upload it at some point when I figure out how.   I have been learning how to use blogger this week.....quite a challenge.

I don't think I'm quite ready for this blog to stop yet, but not really sure actually.  Will upload more photos too, just learning about how to do it!

Thankyou for everyone's support.  We have felt so loved and cared for.

Feeling a bit sad at the moment, but that's ok. 

Kris xx

Saturday October 3rd

This is just a quick entry... well that's what I'm thinking as I start typing anyway.

Today was a hard, but a really good day. Thankyou so much to all the people who came... (the funeral sign-in book had 497 names not including our own.

We really felt loved and supported. The weather even warmed up in the afternoon, blue sky and sunshine.

I think Phil would have approved.

I will be uploading the photo tribute and eulogies etc., in the next couple of days. Tomorrow is Mum's birthday so it will be after that some time.

Kris x

What's happening next.

To give you the heads up.

The funeral will be on Saturday at 10am at Community Church in Warragul.

Community Church is on the corner of King and Wills Street.

All welcome.

There will be more information to come, but please no flowers, we would prefer that people donate money to the Paediatric Ward and Palliative Care (there will be envelopes etc at the funeral).

5:45am

checked out.

tuesday 1230am

Phil seems to be sleeping now.
Us kids are getting some rest while we can.
Pray the puppy will be quiet-a bit disturbing.
Mel xx

Almost 9

Phil is ready to check out. Please pray for peace for him.

Please pray that he wouldn't be anxious. We are sitting around waiting. Kind of a strange thing to be doing. Like waiting for a big event, that will actually be an anti-climax (weird eh)- kris smiles and shrugs.

Kris x

Monday nearly 6pm

Doctor has been, not long to go now.

Phil isn't heaps comfortable and he's ready to go, said so himself. He wants it to be over.
Please pray for Mum and Dad, its really tough.

Please pray for mum as she gives Phil morphine to make him more comfortable but makes him less responsive at the same time. It's a difficult thing, but its more important to keep him comfortable than anything else.

Please pray for patience for us kids with each other.

Kris x

Monday afternoon

Phil is hanging on, but he isn't looking heaps comfortable at the moment, hopefully he is more comfortable than I think he is.

Doctor is coming again soon.

K

Monday.

Doctor just came, Phil's pulse is a bit weaker today. He doesn't have much breath sound at all on his left side, in other words - one lung down.

He seems comfortable, but it would be good if he could drink a bit more, that would help him- there's a prayer point.

Kris

Still sunday...

I think Phil is asleep, the oxygen definately made him more comfortable and he has been pretty peaceful this afternoon. He was a bit more alert tonight.

The doctor is great, he lives just round the corner and he keeps coming round to check on him.

Sleep time for me. We are all very tired.

Will give another report or two or three....tomorrow.

Kris

It's still sunday.

Phillip is deteriorating very rapidly. Please pray that he will be comfortable and peaceful.

it's sunday again........

Phil's breathing sounds worse today...(not that I am a doctor), but he is obviously struggling to breathe.

He is really tired.

There is talk of getting some oxygen for him.

They are also upping his morphine again. (The amount he's on is about 3 or 4 times the amount given to a 'normal'sick person, if there is such a person).

Kris and Mindles

Not looking great.

Finally I'm back at home.

This last week hasn't been great for Phil, he has been quite wheezy, but upon listening to his chest it is actually decreased breath sounds, which is caused by the tumours. It is quite hard for him to breath.

He is very tired.

There is a notable difference between the last time I saw him. Mum said that he has deteriorated in the last couple of days.

While the least of Phil's concerns at the moment he also has a tumour in his abdomen which is growing quickly.

Nothing else to say really.
Kris

such a long time

I'm so sorry it has been such a long time between updates....I feel like I nearly forgot that this blog existed.

I feel like there isn't really much news, but I'm sure you would rather know that than nothing at all. Phil had some of his meds changed around last week, but that made him really drowsy so they changed them back. (He was getting a sore tummy from having the needles going into his tummy for the syringe drivers so they were trying different options, the 'site' (place where the needle is has to be moved every few days or so....so he must have lots of marks on his poor belly).

Anyway I feel I haven't seen him properly for a bit over a week now so I don't have much to report, (Melinda has been on placement in Melbourne still too, so neither of us at home). He was in good spirits on Father's day when I was at home.

Thankyou all for your prayers and support. Please keep praying for Phil, please pray that the drugs they give him would be effective but also enable him to be awake and alert and enjoy the company of others.

Love Kris

Phil is doing really well at the moment, his voice has finally come back (it was croaky for a few weeks there) and he is in good spirits.

We had a good time on the weekend playing cards and watching movies.

Phil's sense of humour is still completely intact. He has still been in fine form. getting up to mischevious even from the confines of his bed.

Melinda is doing a couple of weeks of night shift nursing placement at the moment, combined with daytime interviews for positions for her grad year. Please pray for her....interviews are important and combined with no sleep.......

Kris :)

Canasta....

The morning of the night Phil had his stroke Phil and I were chatting on facebook and we had decided that the following day we would play canasta, we hadn't played for ages and I hadn't been at home for a few weeks. (When Phil was having treatment last year he and I used to play canasta with Mum a lot. It was like our thing).

Anyway on Saturday morning we finally got to play. It wasn't the great game of Canasta ever, but that wasn't really the point. Fun times.

Kris x

Phil is doing pretty well at the moment. Eating and drinking well, sitting up watching movies and playing the Wii and the xbox. We are enjoying some fun times :)
He is also able to check his facebook/email, so if anyone wants to send him a message through those means, please feel free to do so.
The rest of us are doing ok, I'm currently 1 week through a six week nursing placement, staying with Ben, Lovy and their new puppy. Everyone is well.
Thanks all heaps for everything :)
Melinda xx

...how are things?...

well, Melinda and I both aren't in Warragul at the moment, she has a 6 week nursing placement at Monash Med, and I am at college in Lilydale.

But I am hearing good things from home and Phil was texting me tonight, not the one text effort but a conversation. He's still tired and the like, but it is nice that he seems to be comfortable, and able to use and read his phone. Well, that is what i can tell from far off Lilydale anyway...will update the blog after Mel or I are home at the weekend.

Kris xx

another update

Phil's settling back into being at home. He's doing ok, eating and drinking a little more. He was able to sit out of bed for a few hours yesterday which was nice.
He's still really tired, sleeping a lot of the time.
The rest of us are doing ok. I passed both my exams. Ben and Lovy just got a new puppy.
Not totally sure where things are headed or when at the moment, but I suppose we will find out when we get there.
Thanks all,
mel xx

home again

Phil came home this morning :)
He's eating and drinking a little more, hopefully this will continue to improve.
He's really tired but doing ok, and we are all relieved to be back home again-it is much easier.
Currently he's lying in bed listening to a Harry Potter CD. Hopefully it's relaxing.
Thanks again all.
Mel Xx

Prayer point for the day

Spoke to Mum earlier, she said Phil is doing better but please pray that he will drink more.

When I spoke to Mum he was not longer on the drip so he really needs to drink, which isn't easy when he hasn't done for a few days.

Please pray that he will feel thirsty and want to drink :)

Kris

Hey all, just thought I would pop in a quick update on Phil.

He is still in hospital, but on the third floor now (its a crazy maze up there!!) cause there are no free beds on the kids ward.

His nausea has been brought under control and he has just been resting....from the nausea and not drinking he doesn't have heaps of voice. We thought he was asleep today and then someone told a funny story and he smirked and then was grinning from ear to ear. So while he is sleepy/resting his eyes most of the time, it is nice to see him comfortable and not much pain.

He has been given a second syringe driver which is giving him a continuous dose of an anti-nausea drug that I have forgotten the name of.....

That's all I can think of for now.

Melinda got her grad applications in and had her last exam today. Jenny, Melinda and Dad are staying in the city tonight have just gone and seen Wicked for Jenny's birthday.

Thankyou for your prayers. I know for me personally and I'm sure it's the same for my other siblings to that it is rather hard to focus on the looming LARGE assessment tasks at the moment. Please don't pray for people to be generous with extensions, please pray for us to be able to focus to get them done and out of the way :)

Well I had better go sleep so I can actually study!

Love, Kris (took me three goes to type my name correctly!)

Phil went back in to hospital again at about 11 this morning. They want to get him rehydrated and feeling well enough to be able to eat and drink.
Not sure how long he'll be in for at this stage-hopefully just a few days.
Please pray for wisdom for the staff on the best way to make him comfortable.
I did well in my first exam, and have my second one tomorrow. We are all doing ok, just very tired.
Thanks again all.
Mel

The last couple of days haven't been great for Phil. After he perked up on sunday night, as Kris said, that was pretty much the best he's been this week. He's been really nauseous and feeling miserable.
One of Phil's doctors came to see him this morning, then went and called another doctor from the Royal Children's hospital. They discussed it, and decided to try another anti-nausea drug. He's just had that, and if he's not a bit better in a few hours, they are going to readmit him to hospital, where he can be better managed.
Will update again when more is known/decided.
mel

another week

Hey all. Melinda had her exam today and reported that it went alright. Yay that is good news. Jenny's birthday tomorrow, she is missing the first part of school so she can have waffles (family tradition) with Phil when he wakes up.

The family party on Sunday was fun, the food was great. Phil wasn't great though. He slept most of the day and was pretty miserable.

They have upped his morphine which while helping with pain makes him feel sick and so in turn his anti-nausea drugs have to be adjusted. Poor kid.

It's hard for us kids to know how to care for him when he feels sick and just wants to be left alone. Feel a bit lost really. He did perk up a little bit on Sunday afternoon and that was nice. Got my first hug in quite a while.

Thanks for your prayers. Please pray for Phil that his morphine and other drugs will be effective.

Please pray for peace for us all.

Love Kris.

The first few days at home have gone fine, Phil is pretty comfortable and his pain is basically under control. Nothing new to report really.
Phil is happy to have visitors, but he has requested that people call before they come, just to make sure it is an ok time.
My exam's have been changed, I know have one at 9 on monday, and the other at 9 next friday. Hopefully gives me a bit more time to study!
We have a family get together with all the extended rellies at our place on sunday, it will be really nice to see everyone. I think Phil will enjoy it, but hopefully won't get too exhausted from all the company.
That's about all for now, i'm quite pleased that I updated more regularly than usual!
Mel xx

Hullo all, sorry for the delayed posts, especially to those who I've seen throughout the week who have been pestering for an update!
It was exactly 4 weeks ago yesterday that Phil went into hospital. What a crazy 4 weeks they have been. A great deal of stress and uncertainty, but we've all managed to get through alright.

And for the big news...Phil came home yesterday :) This is the next step in this rollercoaster journey, and we are all praying that Phil (and the rest of us!) can adjust well to being at home. So far so good, Phil has been doing well, a bit tired, but pain is under control. We are having a visit from one of the palliative care nurses once or twice a day to help out with a few things and see how we are doing, and one of the doctors will visit every couple of days.
We are so thankful to all the wonderful staff up on the ward at the Warragul Hospital who have taken such good care of Phil while he's been up there. They have done an amazing job, and we applaud them.

Another thankyou required is to our wonderful friend David Innes for contacting his Masterchef connection, who organised for Phil to be sent a Masterchef apron signed by some of the contestants! Phil was really excited about it, he has been an avid watcher of the show (as has the whole family) :) He was very excited to be able to be home to watch the final episode last night!!

Now that Phil is home, he is usually quite happy to have a few visitors, so feel free to drop round and say hello, he appreciates seeing a new face.

As for the rest of us...we are all doing alright. Jen went back to school last week, and so far it has been good. I start back at uni today. I have an exam on thursday (because I deferred them) which I would really appreciate prayer for, as I haven't really achieved any study these holidays. I also have to have job applications in for next year by the end of this month, which haven't gone far yet. Ben, Lovy, Kris and Sherryn are all in their respective homes, returned to study and work. They are all doing fine.
Mum and Dad are a bit tired, as would be expected during the adjustment, but otherwise they are alright, just adjusting like we all are.
Well I don't think there is any other news, we are just so thankful to be able to bring Phil home.
Thanks once again to all of you for your prayers and support, it is so greatly appreciated.
Blessings, Mel xx

Things are a little quieter around here with only the usual residents at home now, minus Phil. Home has been mentioned again, There's going to be a meeting tomorrow night to discuss it further.
Meanwhile, Phil has been started on a pain management device called a syringe driver. It is basically a small pump which you can fit a syringe into. The pump is programmed to push the fluid in the syringe over a certain amount of time. The pump is attached to Phil through a small needle which sits subcutaneously (just under the skin) in his tummy. The medication they are using in the syringe driver is morphine. The syringe driver takes a little bit of time to get right, they ahve to figure out just how much medication Phil needs to be having to control his pain, so it will take a few days to calibrate.
Nothing else new really, just trying to encourage Phil to sit out of bed for a few hours each day, which can be hard when he is tired.
Thanks all for everything.
Mel xx

Kris (checking the blog)- "My goodness! We haven't written on the blog since Sunday!"

Melinda - "Are you serious?"

Sorry folks, we have no good excuse things have been pretty tame around here.

Phil is eating, still not drinking much.

He has had some more physio this week and has sat out of bed for a little while a few days running.

They have changed Phil's drugs, so that he is no longer on IV morphine, actually he is off the drip, (still has the PICC line though). So now he is on oral morphine and endone (which is also morphine, a quick acting one), along with a plethera (Mel just mumbled that word behind me) of other drugs.

The word 'home' and 'next week' have been mentioned a few times, but as usual we will believe it when we see it.

Phil recovering to this stage was not expected, the drs in Warragul have been talking to the palliative team at the Royal Childrens to get advice of Phil's situation. A stroke in a seventeen year old is very rare. Every now and then the doctors get all excited about what they are going to do next, then they remember (by seeing a scan or Phil feeling sick), the reality of Phil's situation.

Please pray for wisdom for the Doctors and Mum and Dad as they make decisions about the next steps in caring for Phil.

I'm back to college on Monday, Melinda and Jenny still have another week off school.
Please pray for Melinda as she needs to start applying for nursing jobs (her eyes are widening), and also as she had to defer her exams 3 weeks ago, so they are coming up soon!

Going back to college, school etc., "normal life" I spose the word would be but then again I spose this is "normal life" for us... anyway.... it is a bit stressful, a) because we aren't at home with family, and b) because it is kind of overwhelming being around people who may have no idea at all "how your holidays have been". Such a conversation killer. : )

Wow feels like I have written as essay, shows how long I've been on holidays for!

Kris xx

should have written this the other day....

for those who don't know a nasogastric tube is a feeding tube that goes up the nose and down the throat into your stomach...it is for people who are having trouble eating or aren't eating.....they put the food through the tube...anyway as you know Phil hated the tube with an undying passion and since having it taken out he has been more motivated to eat than i have ever seen before. So that is an answer to prayer. He has also been given some drugs to stimulate his appetite and they seem to be working he ate his dinner last night plus half of mum's.

Last night he also had his first night by himself in hospital (first night alone in this last two weeks in that is), Dad came home and slept on the condition that Phil's pain meds would be in ready supply if he needed them, apparently Phil slept well, and if Dad hadn't had super rich chocolately pudding cake right before he went to bed I'm sure he would have too!....

Kris xx

Sunday again again....

Hey everyone, its Sunday again again. Wow, says Melinda (genuinely surprised sitting next to me)...

Phil is going ok as long as the pain meds are kept in ready supply...the minute a headache comes on morphine and panadol are given ASAP...otherwise it is not fun for anyone involved.

So phil doesn't have a normal drip in his arm anymore, he has the PICC line that Mel talked about...it should be able to stay in a long time, even if it isn't connected to an IV machine, so it's nice and flexible.

Dad shared Phil's testimony when he preached at church this morning, it was a bit emotional for everyone..... meanwhile other than occassional expected emotional ups and downs we are all holding together ok. Another week left of holidays for me, not sure about the others, think they have a bit longer.

We are collecting photos of Phil and are wondering if people have any particularly good ones they would like to pass on to us. (We don't really have many pics of Phil with his mates....probably because he has been sick for so long).... so if you have any, and have time to find them (seriously no stress), could you please email them to phillingyouin@gmail.com or pass them onto us in person...(we can scan them and give them back or whatever)....

right now i am loving the sound of rain on the roof and my bed is calling my name (hopefully someone has just put on the kettle of my hot water bottle, best friends are good for such things).

Kris xx

laughs

Phil had a good day today. He was pretty tired, but Jen and I were telling him hilarious stories and he was laughing so hard he cried! A great site to see :)

Yesterday Phil had a PICC line inserted. A PICC line (Peripherally Inserted Central Catheter) is essentially a permanent IV which goes in your arm and goes in to major blood vessels. Phil has had a few issues with his IV line...I think he's had about 5 in the time he's been in, so hopefully this will make things much easier.

Phil's still been tired and getting headaches, but overall he's in good spirits.
Wow, nearly been two weeks! Crazy eh...
Thanks all.
Mel x

Good news.....

No more nasogastric tube! Melinda just spoke to Dad, Phil is grinning from ear to ear. No more tube!

NG tubes aren't so bad for little kids, they seem to get used to them very quickly, but in teenagers and adults they aren't fun at all, they can be felt in your throat every time you swallow...yuck.

Wednesday already!

I just looked on the blog and was surprised that nothing has been written for three whole days.....

Today is a bad day. Phil was apparently in a really good mood this morning and asking to play monopoly, then, he had a nasogastric tube put in..... he didn't enjoy that at all. In fact he hates it, a lot. So much so that he has even threatened to refuse to swallow his tablets....(the nurse said they will crush them up and put the through the tube....)

He has been having quite bad headaches and vomiting which isn't much fun for the poor lad. We have been keeping clear of the hospital unless specially requested cause he doesn't really want company. Poor kid.

Melinda is currently knitting two woolen turtles, one for me and one for Renay....(maybe I should introduce her....she is my roommate from college and came to keep me company...all the way from QLD).... Everyone else is fine really, nothing much to report.

Thanks for prayers and support.

Kris x

Sunday again....

This last week has gone like a whirlwind.....

Late last Saturday Phil was admitted to Warragul Hospital after having a major bleed on his brain, which caused a stroke.

The doctors didn't expect him to survive Saturday night, let alone Sunday, but he is still with us, and has improved vastly since then. He is awake and whenever he has morphine he is chatty and happy to see people.

We don't really know what is happening next.....he needs to be off his IV drip and eating before he is allowed to come home. So needs to be eating and drinking lots more.

Even after that we don't know how long we have. Yay for the waiting game?!.......

Kris x

yay :)

Phil asked for some macaroni cheese this evening, so Jen made some and he managed to eat a bit! :)
He has been awake almost all day, so hopefully will sleep really well tonight.
Mel xx

sorry for the information shortage....

Phil was very tired this morning. He complained of a headache and was given morphine, after that, he didn't stop talking. Very chirpy and having a bit of a laugh about stuff in general. We all got a chance to hang out with him which was nice.

Ben and Lovy have gone back to their place for a couple of days, as Ben is building a bridge (literally!). Kris and Renay have headed home for the day to do a friends wedding flowers.
The rest of us are still at home.

Although Phil has been 'improving' we aren't really sure what that means at this stage. The doctors don't seem to be sure what direction we will be taking next in regards to Phil's care, but we are taking things one day at a time, and that's all we can do.

Phil has been a bit nauseous since sunday, and hasn't eaten anything since he's been in. However this morning he felt like wedges (he asked this in a way that reminded Vanessa of a pregnant woman). By the time they got there, he didn't want them, but it was still good to see him thinking about food.

Nothing else for now, things are just settling into a rhythm, which is quite nice.
Thanks all,
Melinda xx

a nice day....

As said earlier by Melinda we had a nice day. Phil woke up and chatted to everyone. Nice memories for all involved. Lots of hugs...Phil even told someone a recipe that he had cooked recently. His vision was good, made obvious by the fact he could tell that I have had my dreads fixed at the hairdressers, and his sense of humour still definately intact.

When asked he said he was very comfortable. I went up this afternoon and he was sleeping deeply, snoring quietly. He looked peaceful.

Meanwhile back at the Guilford household (2 minutes around the corner...we are in Warragul for friends who are wondering).... I received a text message to say that a chicken had escaped....Mel asked to tell the story...here she is....

So we were at home when we got a phone call from the next door neighbor telling us that there was a chicken loose in their back yard. We have had a few issues lately with escaped chickens, so nine (the exact number required for chicken catching) of us headed over, the task was made more difficult by Johnson, trying to be helpful made random realistic chicken noises...which Ben and I were listening to intently, only to find there was so chicken there. With much chasing, bush squashing and with some expert work from myself (mel), ben and sam clements, and cheering from many others, the chicken was soon in my arms. Just a little drama to add to our day :)

About to eat a lamb roast cooked by Johnson....signing off Kris xx

P.s. an explanation worthy moment...

The other day Phil woke up and asked for herbs....he wasn't quite making sense, so a put my hand on his shoulder and asked him again...and he said "I want some marijuana..."...then a few minutes later when the nurse came in with some panadol he said "I don't want panadol, I want marijuana, something that will actually work"......

where did this come from...well (im looking up Phil's facebook right now...i wrote him a post about it)....I had a dream a couple of months ago that Phil was given medicinal cannabis from his oncologist and we smoked it together... hehehe...and he remembered. :) In my dream it was all his idea, and you wouldn't deny a sick child his wish now...would you......

Hey Guys,

We were up at the hospital this morning, and Phil was really good. He was awake, cracking jokes (Including the first fat joke he has made in a while) and he was really cheerful, wanted to see us all and gave us all hugs.

He got tired pretty fast but it was good to see him, personality and all :)

Mum rang me a little while ago and said that even though he is extremely tired he was asking if people are coming up, so it's nice to know that he does want us there, and is able to put up with a bit of our noise.

He's had a bit of chest pain and a headache, they are trying to keep on top of these with lots of drugs and stuff.
Thanks again all :)
mel and sherryn

Phil isn't really all that comfortable today. He has been a bit more active but is really tired cause he didn't get much sleep last night. He has had a bit of chest pain which they gave him some meds for.

I'm not sure if we said this earlier but he hasn't had anyfeeling down the left side of his body...but last night he was able to squeeze mum's hand and was asking me to crack his thumbs....

Mel came back just now and he was more settled that when I was there earlier.

Please pray that he will get some good rest.

Thankyou all for your support, we are feeling the love. Especially the people who are organsing things who we can't even see....

can't think right now.....

Kris xx

phil's a little bit more alert this morning and was asking if he had any messages on his phone. He cannot use the phone himself, but asked Kris to read out any messages if he had any. so if any of his close school friends who already have his number would lik to message him, you're not likely to get a message back, but he will probably hear what you say.

the toothbrush saga......

So this morning i commented on the blog that Melinda had used my toothbrush...now this is not the first time this has happened...i think it might actually be the third or forth....made obvious by the faded permanent marker that says "This is KRIS' toothbrush not MELS"....anyway... our hero of the day is Kathy Brewer who turned up with some bread and new toothbrushes this morning!!!

I was actually quite happy to keep using my toothbrush...but just went down the street and whilst out received the following text from Melinda...."I realised it was your toothbrush when I stuck it in my mouth and looked in the mirror....", that is too many times.....goodbye old friend. There is a brand spanking new toothbrush awaiting me on our kitchen bench. Thankyou Kathy.

On another note Phil has been more active....he actually asked for marijuana this afternoon...on two occassions..I'm sleeping now but will explain this tomorrow... Just when I left Mum and Dad both individually said goodnight to him and he responded to both of them saying "I love you too."

Sleeping time here. Thankyou for all your support.

Love Kris

Dinner Roster

Hey all, Johnson here, I have been working today but have been thinking only of things that myself and others can do!!!! Most/some of you know that I am a chef..... well I think its going to be a good idea to start up a cooking roster for nights only!! Have spoken to all of the clan and they reckon its a good idea, they said that breakfast and lunch they can handle but dinner may be a different thing!! So how do we get this out!! Well that's my Job! So if you want to help out call me up and let me know what night you can help out with!! My number is 0417314872. So please call and lets get this roster happening!!

Phil has been a little more responsive today...woke up before and wanted to roll over and when asked which way he said towards vanessa, and then waved at her :) He was also telling a couple of lawyer jokes to ben apparently. Just trying to get some good sleep, he's really tired. The rest of us are just a bit exhausted, but doing ok. More soon.
Mel

We are thankful for: A good nights sleep.

Melinda, Sherryn, Kris and Mum all slept well. (Sherryn didn't actually move all night)...
Everyone else is still sleeping. (Even Dad who did the night shift got a few hours).

We are thankful for: Our friends....

Johnson, you are a star enough said.
Ness and Anns, you also.

My lovely ones (Tamz, Willie, Bindi) who organised things in Melbourne for me and then the ones came down and did all sorts of useful things, thankyou. (We came home from hospital to a clean kitchen and other important things done)...thankyou Laurin too.

Thankyou for your faithful prayers...who are on a few different continents...we feel very supported at this time.

Oh, by the way, almost forgot.... not much change with Phil.

Plus everyone else who we know is praying, the mood here is peaceful.

I've nearly completely lost my voice, Melinda is on the way...(doesn't help that she used my toothbrush last night...apparently it is the same as her old one!....)

Please pray for health for us all.

God is good.

Kris

mel hates titles...so we aren't making one.

hey, just got back from a few hours at the hospital. no news really. Phil's heart is strong which means its keeping his body going even though he's not getting better.

he squeezed my hand before...it was kinda like a pregnant lady when the baby kicks... anyway none of our heads are working...and its allfuzzy...if you could see me typing and how many mistkaes i am making you would tell me to stop using the computer...so i will,. in advance take your advice.

love Kris

the latest

not much new at this stage, phil is still reasonably stable and the doctors don't really know what sort of time frame we are working with.
heading back up in a minute.
mel

Just got back after about 3 hours at the hospital , am home for a nap.

Phil has had a large bleed on the brain, which they think has caused a stroke to the leftside of his body.

The whole family were called up to the hospital where we have been with phil. He has been unconscious but can hear us so we have been talking and saying our goodbyes...it just Really really hurts.... (im crying in front of the computer)....

three of us came home cause he seems to have stabilised somewhat and is actually sleeping now.

we will go back first thing in the morning.

kris

maybe a change of plans?.....

Phil has just (within the last 15 minutes) been taken up to the hospital (11:00PM Saturday night).....we will keep you posted when we know more, but it looks like the baptism is off.

Please pray for him and the doctors.

Kris xx

Hot off the press....

Just got off the phone to Dad who is at the specialist with Mum and Phil.
Good news! (I don't feel like I get to say that often so that makes me smile)...anyway...the good news is that things haven't changed much. Meaning that the tumors haven't really grown....which is good.

That's all I have to say really. Phil is getting baptised in Warragul on Sunday morning. That should be great, really looking forward to it.

Hope you are enjoying the sunshine today!
Kris xx

Phil's Baptism

Hey all.
Phil has had his first full week of radiotherapy this week. It's going fine, he's just getting really tired from it. He's also quite bored with not much to do (and no sisters to tease)!
As you may have guessed from the title, Phil is getting baptised! Praise God! It's very exciting to see Phil taking this awesome step.
I know that although Phil doesn't know all of you, some of you probably feel as though you know him, so I thought that I would post the details of his baptism. Feel free to come if you would like to.
It's happening on Sunday the 21st of June at 9 o'clock at the Warragul Community Church, which is on the corner of King St and Wills St in Warragul.
In other news, Phil has been wanting to take a family trip up north. Dad rang Challenge (the Children's Cancer Support Group), and they have organised two weeks away for Mum, Dad, Phil Jen and I. We'll spend one week at the Gold Coast and one up at Port Douglas, leaving on the 6th of July. We are all really looking forward to this time.
Thanks for your prayers guys, especially for energy for everyone at this time, and for those of us doing exams. We are all doing ok at the moment.
Blessings all, Mel xx

Hey everyone!

Hey everybody,
Its phil here. Just thought i would right a quick update on how things r going.

I start radiation on thursday. Its going fine. Im only in the hospital for about twenty minutes a day so it gets pretty boring during the rest of the day.
Mum and I are staying with some friends down there. Their cat likes me, but not mum.

So things are going good with me, im not feeling to bad, but my appetite isnt great. Everyone else is good.

Just a couple of prayer points before i go.
Melinda, Kristen and Sherryn all have exams coming up. That the radiation will not make my throat sore, so i can keep eating normal food and just for the Dad, jenny and melinda while mum is not around.


Anyway I am trying to follow Valkyrie at the same time as writing this and its not going to well,

Thanks for the prayers guys,
Cheers, Phil

Starting tomorrow...

Hey all... (I'm sitting in the library at college...studying..) thought I would write a quick update.

Phil is starting some radiation treatment tomorrow...on the lump on his shoulder. He will be having a few weeks of treatment, meaning that they will be staying in Melbourne 5 days a week for that time.

It shouldn't have any really bad side effects, there is a chance he will get a sore throat cause the radiation will be near that area but they said if it is bad they will give him a few days rest.

As far as I can tell they are a bit unsure as to what is going on with this swollen gland. Phil told me the doctor thinks it could be a mutating lymph node, and it is possible that that is what is causing Phil to feel unwell.

Thanks for your prayers.

Back to the books for me.
Kris x

today's news

Hullo all.  Phil had a routine appointment with his oncologist today, he had a chest x-ray to see how things are going too.  The nodules on his lungs aren't doing much at the moment, they haven't really grown since the last scan which is good.  I think Kris mentioned in the last blog that Phil has a lump kind of between his shoulder and neck which has been giving him a bit of discomfort, not too bad, just annoying and a little painful.  The oncologist looked at it today and said he thinks Phil should have some radiotherapy on it to reduce it.  So he's got an appointment with a radiotherapist in Moorabbin (I think?) sometime soon to figure out when that will happen.  Last time he had radio it was at Peter Mac, but they decided this is a bit closer, which will be much easier.  

That's about it for now, Phil is doing ok, hasn't been able to make it to school yet this term, he is usually feeling a bit unwell when he wakes up, but he's chugging along, as are the rest of us.  

Thanks for reading, and for your support.

All for now, Melinda xx

So I thought I would write a post cause it has been a while.
Mum, Dad, Phil and Jenny had a great time away in Tasmania...hopefully we will get some photos up soon, I need to be in the same place as the pictures are.

Melinda and I had a great Easter with friends from college and some other places going down to Warragul for fun times. We had a great family lunch on the Sunday.

Anyway Phil has had some chest pain. He went to the doctor who gave him some Otopocide...I think that is how it is spelt..it is an oral chemotherapy, not too strong, not meant to have side effects. The dr thought the pain might have been being caused by a lump pressing on his ribs. Phil has tried the chemo, but it made him sick so he hasn't continued it.

He also has a swollen gland on his shoulder...not really sure what is causing it..but apparently it is quite obvious. weird. Still he has a specialist appointment in a couple of weeks so we will know more from there.

So he hasn't been too great, but he still looks well which is nice.

Thanks for prayers and support. We really appreciate you all.

Love Kris

Holidays

Well they are off and away. Phil, Jen, Mum and Dad have gone to Tasmania for three weeks, they left on wednesday. This leaves me (mel) at home and everyone else scattered around their various locations. We are hoping and praying that they have a really relaxing, normal time while they're away. Your thoughts and prayers for this are greatly appreciated too.
In other news...not much really. Phil has been having a bit of chest pain over the last couple of weeks. Not totally sure what this is, he had an x-ray that didn't show much. Hopefully it won't bother him too much whilst they are away.
Well I'm off, so blessings friends. Keep remembering what Easter's all about.
Melinda x

Thursday test results....

Phil had his appointment with the oncologist yesterday to get his results from Tuesday's scan. The results of the scan were as expected (apparently....). The largest tumor is now 12mm, from a previous 5mm, (last scan was December), there are also more spots, which are small tumors.

It would be nice if we (Mel and Kris) had some idea of what that ACTUALLY meant in terms of when and what will happen next. Feels pretty vague at the moment. He isn't going to be having any chemotherapy and as Melinda said the other day, he is too young for a clinical trial.

BTW Phil looks to be the picture of health, no signs of what's lurking beneath.

On other fronts things are good. It's Mel's 21st on Saturday night so we are gearing up for a big party....Mum has been cooking for weeks.

Phil, Jen, Mum and Dad are going to Tasmania for 3 weeks over the school holidays.

Melinda is sitting next to me and just said "It doesn't sounds like much information, does it?...But it's all we know eh...." so there you have it. Updated.

K and M. x

A little update

Hey all, Melinda here. I'm the middle sister. Kris said in the last post that I would be uploading photos of our time away, and I most certainly will...just been having a few technical difficulties known as 'new computeritis'.
So what's the latest? Not much really. Phil had an appointment with his oncologist a little while ago (maybe a week ag0?), which was fairly uneventful, but he did say that it doesn't look like Phil will get into any of the clinical drug trials that may have been a possibility. This is basically because he isn't yet 18, and isn't terribly unexpected I suppose.
In other news, Phil has gone down to the Royal Kids today to have a CT scan of his lungs, which will tell us what the tumors are doing-growing, staying the same size, etc. He then has a further appointment with the oncologist on Thursday, which is when we will get the results of the CT scan. No idea what sort of news we will get with these results, just back into the waiting game for a little while....
I (or someone!) will write again when we have those results, so you can all be kept in the loop.
Thanks for all your prayers and support :)

We're back....

Our family time away was lots of fun,  we got back on Sunday night.  Melinda is going to upload some photos and possibly tell of more adventures, but in the meantime we are home and well and had a very relaxing and normal time.  

We did three huge jigsaw puzzles, played guitar...wrote a diet song for Melinda (Phil might let you in on that family joke)...had a huge jellyfish fight on the beach, did lots of swimming....ate good food..... it was fun times all round.   Just what we needed.  

For now life is back to a strange kind of "normal" in our house.  Well not that I'm actually there...I (Kris) have just moved on campus at BCV in Lilydale.  But anyway there a strange kind of normal going on as life continues until things start to change, not sure when that will be.  How is that for vague :) 

In the meantime thank you all for your continued prayers and support. 

Kris

Background.....

I thought it would be a good idea, to give everyone the story that had led to where we are now, and also in introduce you to us, the crazy family Phil is a part of.


This is all us kids, from left to right, Sherryn, Melinda, Jenny, Loveena (Ben's wife), Ben, Phil and me (Kris)...in age order we are actually B, K, S, M, P, J.

This was taken in November at Phil's birthday dinner. He just turned 17.

Phil was first diagnosed with Osteosarcoma in the bone above his knee in 2004. An osteosarcoma is a solid tumour inside the bone, he had a really sore leg, caused by the tumour kind of stretching the bone. He was treated with very high dose chemotherapy and in the middle of that year had an operation called a 'Rotation Plasty'....you should google it, very interesting. They removed the part of his leg, mid thigh to just below knee that had the cancer, but kept the lower part and rotated it so it was backwards and put it back on, i have to find a picture, cause its amazing. He was in a reclining cast for about 13 weeks and having chemo at the same time.

After surgery Phil had another few months of chemo, until he was really sick and the doctor was
satisfied that the treatment he had was enough.
(12 year old Phil...how cute is he).

The following year, Phil did lots of physiotherapy, then ended up cracking the bone and having to have plaster again!....

Phil with mum after Physio....he's only 12 and taller than her already!

Life in the Guilford household returned to some level of, normal can't be the word!

In about May of 2007, Phil had a scan that showed a mass on one of his lungs. Lungs are scanned regularly cause Osteosarcoma tends to spread to lungs. (When cancer spreads the resulting tumours are called metastasis). They couldn't biopsy cause it was in a tricky spot so they gave him chemo and it shrunk and then they operated. Strange this is though, they aren't actually sure if it was cancer or not....

Phil decided before that round of chemo to have some fun with his hair....unfortunately instead of falling out very quickly as with the super nasty Cisplatin chemo,
Phil's hair stuck around for a long time! It was pretty funny, because we actually thought that his hair wasn't going to fall out at all and that the new style had been a waste of time....but eventually it came loose.

In December of 07 Phil had a minor brain haemorrhage, which was caused by a tangle of capillaries randomly bursting....rare and random. That resulted in a more serious bleed taking place in January and Phil being airlifted down to Melbourne from home in Gippsland.
He didn't have to stay in for too long and was readmitted about a month later and had surgery to remove the bleed (Feb 08). FYI...when they do brain surgery they cut a zigzag scar on your head so the hair can grow back around it....it looks cool too!

In about April-May of last year (08) Phil started getting a sore leg. Because he wears a prosthesis they just thought it needed some adjustment, but that didn't change anything...and eventually an MRI scan revealed that he had a tumour in the bone in his pelvis.

So more chemo....by about July/Aug Phil was 184cm and 45kgs...too skinny for chemo...well that's what it does to people eh. So he had a break and then had about 6 weeks of radiation. The treatment finished up just at the end of November in time for Ben and Lovy's wedding in the second week of December.

(Kris (me) and Phil)

So we had the wedding, which was lovely... and Christmas and then somewhere in there Phil had a CT scan and then in the first week on January he had an MRI. These were to see how the site in the pelvis was going and to check that his chest was clear.

Phil was one of Ben's groomsmen...here he and Jenny are looking smart as. (Can't believe they are the youngest two!)


We got the results last Thursday saying they had found 5 lumps on his lungs, the biggest one was about a malteser size (I think) and the smallest ones a few millimeters.

So that brings us up to now.

Hope that is helpful!

Kris x

It has to start somewhere....

Dear Friends,

We know that the address for this blog is terrible. Very lame. But it made Phil laugh, in fact, he thought it was great.

This blog has been created to help keep everyone in the loop and updated as we head out on this journey together. I feel like this is an accurate way of sharing information, because it can be updated quickly, as things change and as people change their minds etc....

It's hard enough with the six kids in our family to keep everyone on the same page. But we want you to be.

For now other than what is in the background (that i am about to write!) we don't have any news....other than the fact that we are going on a 10 day family holiday to have some quality time (till the 15th feb...count backwards).

We will see you when we get back!

Kris