History

Tuesday, April, 2008 5:39 AM CDT

Hi!

Almost a year since I updated this page.... and so much to tell.

Fraser is doing really well. He is a crazy and wild four year old who has the most wonderful BIG personality. He is crazy about his 'school' (daycare), and can't wait until he joins Bailey next year at big school.

In regards to cancer..... we are all ignoring that it exists at the moment. Fraser is still not in remission, as he has the residual tumour around his spine, but he is stable and has been now for an incredible two years. He is a healthy young boy for most of the time and has no idea of what path he has travelled or of the obstacles that he may yet have to face. I have recently significantly increased the amount of time between scans and checks for Fraser, as it has become an ordeal for everyone, and as he has been exposed to far too much radiation in his three years of treatment.

I don't update this journal very often, but I do check frequently to see who has been visiting.

We thank everyone for their support for Fraser and our family, and hope that the only updates we have to mkae in the future are those of great Fraser stories growing up.

Cass

Tuesday, February 20, 2007 2:07 AM CST

Hi

we've been home a week from scans in Sydney.

Glenn Fraser's oncologist: "He's still not in remission, but he is unchanged. His NSE level is still not within normal limits but it has remained stable for a few months as well."
We were happy with this... celebrated with a few drinks at Ronnie Macs that night.

Glenn also said "Usually at 12 months post treatment we stop scanning with MRI and MIBG and do xrays, bloods etc, but with Fraser we aren't sure what to do. What would you like to do?"
We want to scan again in May at 3 months and then we might (deciding how we feel then) stretch those two scans out to 6 monthly. The stress ride is just getting too much to deal with.... I guess you could say we are well and truly over it all at the moment.

Fras is doing so well at the moment... there are even times when I forget that Nb is a part of our world. Shame it always will be now.

We are recovering from some great celebrations for Baileys birthday which was yesterday the 19th, and are now looking forward to celebrating Fras' 3rd birthday on the 4th March..... no fire engines this year I think, he'll just have to settle for morning tea with friends and family.

For Bailey's birthday we went ten pin bowling and then had a bbq at home with guests of Baileys choice! We all had a great time, and Bails came in second spot after his camp buddy Tony. Fras had a good time and didnt come last!!! He was so excited and jumped with joy everytime he knocked down some pins.

Will update after Frazzles birthday

Cass

Saturday, January 27, 2007 2:04 AM CST

Hi

an interesting day this one! Two years since Fraser landed in Sydney to be told he had neuroblastoma! We had a little celebration to mark two years survival on the 25th, which was the day that everything in our little world began to change.

Fraser is doing so well right now...... we are so thankful. He has scans in Sydney again the week of the 5th of Feb. Will update those reults when we return.

Cass *There are some new pics in the photo album taken this week.

Wednesday, December 20, 2006 3:42 AM CDT

Hi
Merry Merry Xmas to everyone!

We are just so pleased to be home this year..... Sydney is so terribly far awway from everyone. Joyous joyous joyous is what I am.

Fraser is doing wonderfully! He still has quite a few upper respiratory infections, but hopefully these will be lessened as his immunity continues to strengthen. His last scans showed no change in the remnant, and he is due for his local set of tests here at home next week after xmas. I am of course confident all will be fine..... to be honest have to admit I still have those terrible moments of doubt.... but my mission for Christmas is to get past that and enjoy every moment we have!

I finished work yesterday until end of Jan, as did Bailey finish school.... and Fras has 3 weeks at home without his daycare. I am looking forward to having my boys at home! Fras just loves being home as well... his adoration for Bails just continues to grow.

Will keep you posted after we get Frasers results in the new year.

With love
Cass

Thursday, May 4, 2006 5:22 AM CDT

HI everyone

long time since updating I know.. but I do find it a difficult task at times, especially when I am trying not to think about the bad bits.

Fras has been a perfect child mostly.... since we came home. I have never ever had so many nights of near perfect sleep. I actually just finished reading an article where women were asked what they would choose if they could have anything... they mostly said sleep!!!! Well I have been having it!!!!

Big problem for Fras is though..... severely impacted bowel. He had constipation during his final chemo... yes 2 months ago now.... and has had diarrhea now for 6 weeks. I, of course, after 4 weeks and two clear cultures, had settled that it was relapse. (The hormone secreted by neuroblastoma tumours causes diarrhea) Our wonderful paed did an abdominal xray, and when he placed it on the screen, I honestly thought he was showing me that Fraser was full of tumours. But alas, he was showing me he was full of pooh!!!! We have been trying for ten days to clear him out, but to no avail. I am waiting to speak with our paed tomorrow to make the next move. It is amazing though... he is full and completely impacted but has shown no pain or discomfort of any degree.

Fras is also recovering from a flu/cold/throat infection from two weeks ago which saw him with temps. The antibiotics soon sorted that out.

Bailey has been a completely different child having his family home more permanently. He is nice!!!!! He is lovable!!!!! He is just gorgeous!!!! We just had him home for two weeks of school holidays and it was fantastic. He was happy and smiling.... and I was sad to take him back to school on Tuesday. There is a terrible void in our home when Bails is not present.

We go back to Sydney on the 28th of this month for all the scans and tests. I hate the thought of it. Dread it. We are then flying to Burleigh Heads for a full week of relaxing on the beach and in the spa and pool. This part should be nice.

Easter was a grand affair here with a huge fundraiser held for Fraser at a local family owned winery. It had a wild west theme.... and in short we had a fantastic day!!! I will put some pics in his album.

Update soon
Cass

Tuesday, March 28, 2006 1:42 AM CST

Its been a while since I updated... but we just havent been home!

We went back to Sydney for Fraser's final chemo the first week of March which went as well as expected. We then flew home for two days to celebrate Fraser's 2nd birthday..... look in the album (having a few difficulties but will get them all up asap). The day was fantastic..... lots of fun and the fire engine visit went down a treat. Fraser stayed in it for an hour and then screamed when we had to drag him out to blow out his candles!

BAck to Sydney then for scans.... you know the usual schedule. Then we met with the oncologist on Friday... not so happy after this one. The tumour has only shrunk minimally, and they weren't really sure of what to do. They said 3 options were, watch and wait, radiation, and/or surgery. They were leaning towards watch and wait as this is where the minimal risk lies, but apologised for not being able to give us a clear path. They said of we decided upon radiation or surgery then they would support us in that as well.

We flew home again for a week before heading back to meet with the surgeon and radiology people to get a clearer picture of both. The surgeon basically said the main risk was quadraplegia.. so not an option we were prepared to take. Radiotherapy wasnt much better either. As Fraser is so young, the spinal cord is not fully matured, and the damage that would be caused there will cause him significant problems for all of his life. We really had no option but to end treatment as of now and hope as hard as we can that there is no relapse. I am not feeling so positive about this, but will have to become so or I will go mad. If Fraser does relapse it will mean intensive chemo, aggressive surgery, radiotherapy and bone marrow transplant at stage 4 level treatment.

MORE IMPORTANTLY.... the afternoon we arrived in Sydney, Fras had a fall and landed on his port. His temp began to climb that afternoon and we ended up in emergency. His bloods were okay so it was assumed it was a line infection. After 5 days the temp was still huge so it was decided to head into surgery and take out his port. 3 days after this he was released and we could finally head home to Griffith and to Bailey who we had left with Nan & Pop.

So now we are back to 6 weekly checks in Griffith and 12 weekly scans in Sydney. The tumour is still in his spine and we are pretty much where we were last September.

I'll keep udating as Fras has his checks

Cass

Thursday, March 2, 2006 3:43 AM CST

Hello again

We arrived home today after a very quick trip to Sydney for round 8 of chemo for Fraser. He had a long day yesterday receiving Cyclo and Dox.. which have very effectivley made him feel fairly yuck.

We saw his oncologist on Tuesday who is a bit concerned about him having this round when his blood counts are still very low, and has earmarked Fraser for a transfusion at the beginning of next week. We will actually be back in Sydney in two days time to begin his scan regime, and will meet with the 'team' next Friday, the 10th, to determine the next course of action. I have to admit that I'm not too thrilled with the options we have... radiation which will cause spinal damage, neurosurgery to the spine which will cause nerve damage, or watch wait and see again with the option of heavier chemo which in turn will cause organ damage!!! All yuck. The biggest problem, aside from it being cancer, is that the stupid thing has woven itself in between 3 vertebrae making it difficult to get rid of it.

Nicer things now....
Fraser will be two on Saturday the 4th!!! And that is the reason we have flown home for two days..bit silly I know... but I just wanted to have a normal little celebration with him at home. So..... we are having a few children and more then a few adults for morning tea..... lots of yummy things to eat, and helium balloons to add to the atmosphere.. and then a nice surprise for Fraser in the form of a fire engine!!!!!! My aunt has organised this for him.. very sweet. We are having a 'Fireman Sam' birthday cake and a fire engine pinnata as well. I just cant believe he has been with us for two years... I just love him to absolute bits.

Bailey was invested tonight in his cub pack!!! He is sooooo proud of himself and he looks so dashingly handsome. I have taken some pics and will get them onboard as soon as I can. Would love to show him off to you! We were just sitting looking through his badge workbook talking about the badges he may like to work towards.... citizrnship he decided sounded like a good one. Part of it is that he has to do a good deed for someone at least on three occasions. He thought he could visit the local nursing home to give company to the oldies and maybe dress up as someone funny and entertain the sick kids in childrens ward here at our home hospital. He also has to talk about two organisations that help people. He automatically said "County Hope" and "Cancer Council". My heart just beamed. I know he has found it all very difficult this past few weeks, and has been acting out a little and blaming me for things out of our control, but I am so proud that these organisations came to his mind first. We dont have any contact with the Council, but he is aware of them, and County Hope have been nothing short of wonderful to our family.

Anyway.. I'd best get down to the kitchen and make some slices for Saturday.... we are looking forward to catching up with friends on a wonderful day that should be celebrated in the biggest way. Thankyou to everyone that have already left birthday messages for our Fras.. you are special people!

Will fill you in when we are back from Sydney about the 11th..... unless we get stuck there!

Love Cass

Wednesday, February 15, 2006 3:35 AM CST

Hi!

Home again. Fraser ended up having a platelet transfusion before we headed back to Sydney... he bumped his head really softly and it camae out in seconds like a big black golf ball, I knew something was not right. Platelets were just about zero. By the time they arrived on the plane it was midnight... so then he had 15 minute checks fo 4 hours.. not much sleep was had. He was released just in time on Saturday morning to head to the airport to ge ton the plane to Sydney.

Sydney trip was fine.... he had 3 days of chemo during which time he was unwell when his Ondansetron wore off, but we tried the wafers for the first time and they worked a treat. It has become too difficult to get liquid meds into him... he just ends up wearing it. Actually so do we.

Fras has been having his daily GCSF injections here at Griffith Base..... day 6 today of 10. Tonight he is looking very pale so I guess his Hb is dropping.. btu no temps so far.

It is our precious Bailey's 9th birthday this Sunday the 19th.... so hard to believe. Cant believe he is already 9, but cant believe he has only been here that long! Bails is having some friends on Saturday for a celebration... he is more then looking forward to it.

Fraser's birthday is on the 4th March.... he will be two! Big plans there to for a party that we are flying home for... fire engine and all will be making a visit.

We are back to Sydney about the 27th mark.

Till soon
Cass

Thursday, February 2, 2006

Fraser has been in hospital in Griffith again this week. Last Saturday his temp spiked.... neutropenic again!!!! Also his haemoglobin was getting very low.... by Monday he needed a transfusion. Platelets too are terrible at the moment. Poor Fras is literally black and blue all over.

We are back to Sydney on Saturday for the week..... round 7.

Fraser has been doing the media rounds again while we are home. Today's Riverina Times, tomorrow's Area News and also Monday's edition. What a star!

Fill you in what goes on in Sydney as it happens

Till soon

Cass

Cass

Thursday, January 26, 2006 4:45 AM CST

Happy Australia Day!

Can hardly believe we have been living this nightmare for one year now. I will never think of Australia Day in the same way.

Fraser has been doing really well. We did get home, which has been great for the boys. Peter is back at work and I am in isolation with Fras again... quite lonely really.

We have had to make daily trips to the hospital for Fras' GCSF injections, but we get in and out very quickly thanks to the wonderful nurses.

We head back to Syd on the 4th for a week of chemo..... round 7. Only one more after that before he has his scans again. The of course we have some decisions to make.

I hope this finds everyone well... and thankyou so much to those wonderful friends who keep me sane over the phone.

Love to all
Cass

Wednesday, January 18, 2006 5:14 PM CST

Hellooooo!!

Unusual week for us this week... has rained everyday in Sydney something we are not used to. But I am liking it much more then the 42C I would be facing at home.

Fraser ended up having a transfusion last Tuesday and he has been really fabulous since then. He was meant to be having chemo today, but due to a new rash on his face they postponed to tomorrow... or that is what we hope anyway. Otherwise we will have to stay another week! So much for getting home.

We planned his schedule yesterday also, and it looks as though we are going to be here in Sydney for his birthday. Bit sad about that, but i guess we'll just throw a bit of a party here instead!!!!

Will let you know how the week progresses.

Cass

Monday, January 9, 2006 11:20 PM CST

Hi!

Fraser was admitted on Friday 6th in Sydney with suspected chicken pox! he has since also had temps and so is on the full range of meds. They have now ruled out the pox but havent been able to diagnose what the spots are so the treatment is continuing.. he is rather good in himself still. His blood counts are getting pretty low so we will see what tomorrow brings!!!

Update soon,
Cass

Tuesday, January 3, 2006 3:05 AM CST

Hellooooooo

Well... here we are..... 2006! And what does that mean to me??? Almost 12 months of living on the edge of my seat!!

We are still in Sydney for another 3 weeks.. but thankfully we are getting lots of opportunity to do some nice things as well.

Fraser had his chemo last week.. was fairly sick with it on the second day which was very long and very heavy. This week he is having his daily GCSF injections... poor little guy is like a pin cushion. He is very cranky too!!!!! He has settled into fulltime life at RM House though and even has his picture on the front door... the message underneath introducing him as the resident escapee and asking all visitors to lock the doors behind them!!

We have met with his oncologist who has asked us to keep in mind that we will have some big decisions to make in a few months when chemo is finshed regarding radiotherapy and neurosurgery... I am placing myself in denial this next fortnight.. will worry about it then.

Well.... hope this finds everyone well and enjoying their first few days of 2006.

Will let you know how things are going...
Cass

Friday, December 23, 2005 9.13pm Griffith

We had some encouraging news today.

Fraser's tumour is shrinking!!!

His oncologist and surgeon are happy with how things are going so will not take him to surgery at this point. He will rescan when chemo is finished (another 4 rounds to go) and then most likely will do radiotherapy before neurosurgery on the piece left on the spine.

We hope that everyone has a fabulous christmas and we will keep you updated on how Fras is doing.

With lots of love
Cass

Saturday, December 17, 2005 8.17pm

A wild two weeks to say the least!

Fraser was really unwell with his chemo last week... lots of vomiting for the poor little man. But it only took a few days for him to feel better. Then Peter came home leaving Fras and I there for scans. Two days later i got sick... nice Dr gave me antibiotics straight away.

Fras had his MRI.. he handled the GA very well as usual.
Supposed to have MIBG on the Wednesday but it was moved to the Friday.. then it was moved to next wednesday... so we packed up and came home on Wednesday night of this week. We got off the plane at 8pm, and by 9.30pm had Fras at emergency with a temp. They kept him 24 hours and let him home on oral antibiotics. His throat is very red and he's snotty.. just like his mum! Fraser's counts are really dropping at the moment so fingers crossed the oral antib's are strong enough.

We now head back to Sydney on Monday 19th with his injection on Tues and scan on Wednes.. home Thurs is the plan as it is Xmas!!!!!! My mum and sis are coming with Fras and I.. so hopefully we can make it a nice trip rather then filled with medical rubbish. Please say a little prayer for us hoping for the temps to stay away while we are on Syd.. we dont want to get stuck there for christmas.

After Christmas we all pack up and head to Syd on boxing day until the end of January.... i dont expect to get the scan results now until the 28th when Fras sees our oncologist again and begins round 5 of chemo. Wonder what results will show???? Have been worried out of my mind about it. Fingers crossed.

Will update when we get back just before xmas.
Love to all that are reading!
Cass

Saturday, December 3, 2005 7.51am Griffith time

Merry Christmas!!

Fras is doing well... and blood results were fantastic... so we are off to Sydney on Sunday 4th. Fras has chemo this week and then scans the following... the plan is to get home the weekend prior to Christmas and then back to Sydney on Boxing day.

This trip should be full of the usual busy things for Fras, but also some nice things too! We have the Ronald McDonald xmas party this week which we are very much looking forward to. Also some friends from Canberra will be at the house the first week, and then another family are scheduled for scans the same week as Fras... so will be wonderful to catch up with some of our new good friends.

Bails is staying home with nan and pop... goodness knows how spoiled he will be when we get home!!

Hunky Dory hands over at the close of business on the 18th.... the day we should be getting home... so that will be a huge relief for my mum... she should be able to really relax for her birthday on the 19th!!!

Will keep you updated

Hope everyone is well

love Cass

Saturday, November 19, 2005 9.11am GriffithTime

Hello to everyone

quick update...... arrived home yesterday from Sydney.... so far all good. He has developed a rash over his body.. they say nothing to worry about... and has also developed big dry scaly red patches on his scalp... guess this is related to the hair loss... better check!

Fraser has again bounced back from his chemo... oblivious to how unwell he is! He has begun GCSF injections which he of course screams the house down for.. or hospital anyway.. I have chosen not to give them myself.. trying to get him to like me at least just a little bit.

Plans are to have two weeks at home.. due in Sydney on 5th December. Then we will stay there until roughly the end of January. We will be trying to get a week away on the coast inbetween all of that but Sydney will be our base.

Bails came with us this trip ... went to the hospital school and made some great friends with the other kids at Ronnie Macs.

Will keep you updated as things go along

Love to all
Cass

Friday, November 11, 2005 7.51pm Griffith time

Hi to all

We didnt get to Sydney this week due to Fras still being low with his blood counts... but we had them done again today and will be off to Sydney on Monday for Round 3.

Fras has had a good week... really quite happy and jolly.... and he even got his appetite back at the end of the week! Hooray!!!!!

Hope this finds you all well.... will update when we get back in a weekish time.

Cass

Friday, November 4, 2005 9.11pm Griffith Time

I find it soooooooo hard to get this page updated! Please forgive me.

We have just had 8 days in isolation at Griffith Base Hospital... Fras began with neutropenic temperatures the just kept coming back and back and back... and each time he spiked it meant another 48 hours on the ward!! He ended up having 5 different antibiotics to get things under control, began the GCSF injections for his neutrophil levels and is covered in bruising and petechiae. This has been the first time really all year that I can certifiably say "Fraser looks sick". His neutrophils were 0.0 for days (need to be at least .75, his haemoglobin has averaged 75 (should be at least 105), and his platlets got as low as 8 ( should be at lowest 150). I know these levels can get even worse, but his little body just didnt cope after this 2nd round of chemo. I'm quite concerned how he will take another 6 rounds. We have more bloods on Sunday to see if he is good to go back to Sydney on Monday for the next round. I suppose 3 nights at home are better then none.

Plans are for all of us, including Bailey to go this week..... Bails is starting to feel it all a bit. Particularly this past week after we lost our gorgeous friend Brad to Leukemia after a 3 year battle.

We are all very tired tonight... have found it even more draining to be at hospital in Griffith then it is in Sydney. Being home without being home has its own high and lowlights.

Kisses to all those wonderful people who called and visted this week.. much appreciated.

Did anyone hear me on Radio National on Monday???? Was interviewed about the letter I wrote to the paper.

Love to all.. hope everyone is well.

Cass

Saturday, October 22, 2005 6.50pm Griffith Time

It's Peter's birthday today! We managed to make it a respectable day with cake and family. Fraser even sang Happy Birthday for the first time.... well his own version anyway.

We arrived home again on Thursday after Fraser's 2nd round of chemo. He has been a little off colour since, and very tired. He began to lose his hair on Monday, so we had it clipped.. everyone thinks he looks gorgeous.

Oh! I almost forgot!! We had to make an emergency landing during our flight to Sydney!!!!
You know it is never a good thing when the hostess comes and asks you "Can you see any smoke coming out of that engine?" !!!!!! I was the only person with a child on the plane... wouldnt you think I would be the last person she would ask. Anyway... after answering "no... but I will certainly be watching now"... the engine stopped! The pilot came on the mic and said to read our safety cards and fasten our belts as we were diverting and making an emergency landing!! We got to the new destination, and as we landed the tyres blew. It was very exciting with lots of fire engines, police, hazardous materials units etc etc. They herded us into a board room to debrief us.. then brought out the alcohol and pizzas. We had to wait 4 hours for a new plane and crew. We finally arrived at Ronald McD at 10.45pm... Fraser was beside himself with fatigue.

On the medical side of things..... they informed us Fraser will definatley be doing 8 rounds of chemo with surgery possibly after 4. This was a bit of a blow as we were only hoping for 4 rounds in total. They are also a little concerned about his weight, and raised the possibility of an NG tube in the future. His cough still persists too, so they brought in the respiratory team who gave him a work over. They have increased his asthma medication, but feel that it may not be asthma but reflux! Trialling the medications to see what works.

If Fras stays well, we head back on the 7th November for round 3.

Hope this finds all well... and thank you to everyone who are sending their well wishes and signing he guestbook.

Love to all
Cass

Tuesday, October 4, 2005 8.04am Griffith time

Well..... we are home for a few days.

Bone scan and bone marrow were clear thankfully.

Gorgeous Fraser had a portacath inserted on Thursday and
began chemo on Friday on COG - A3961 protocol. The plan is only until Christmas, then Fraser will have his scans again to see what is happening inside. Decisions will then be made regarding more chemo, or trying surgery before radiotherapy. The surgery is a concern for all... they are not sure how to approach it being where it is in the spine.

We've brought Fraser home, and the hospital have agreed to look after him here if he becomes unwell.. but if he is too much for them, back to Sydney we will go.

We are due back in Sydney on the 16th, which we hope will only be for a week.

We are trying to keep him as well as possible, so no offense... but if you have a hint of being unwell, you live or work with someone unwell, you have been near measles, chicken pox, shingles, or cold sores please don't come to the house.

Peter and I are completely exhausted.... we didnt get much sleep, and Fraser had us pacing the ward from 5am until 7pm every day... except of course when his chemo was running, then he was screaming the ward down being isolated to his bedside. Thank goodness for Shrek 2 dvd!!!!

Bailey was so pleased to have us home..... he has been very worried. A deep child with lots of deep questions.

Thanks to everyone who has emailed, or phoned us or my parents...... your support is appreciated.

I'll keep this page updated as often as I can... and will try to get some new pics on.

Love to all
Cass

Friday, September 23, 2005 8.56pm Griffith Time

We got that dreaded phone call today.

Relapse.

Arrived home from Sydney yesterday from his scans. They want us back on Sunday to begin more scans on Monday. Then portacath insertion to begin chemo, to be followed by more surgery.

The piece of tumour that remained in Fraser's spine has doubled in size. They don't really know how to approach the surgery without causing nerve damage.

I hate this.

Monday, September 12, 2005 11.18am Griffith time

Hi!

A quick entry to let you know we are in Sydney next week (19th - 22nd) for Fraser's scans. Will let you know the results when we get them.. hopefully the 23rd after their meetings.

Fraser is now on day 13 without a temperature... hooray!!! Keep your fingers crossed he stays that way.... we don't want these scans to be cancelled.

Hope everyone is well.

Love Cass

Sunday, August 21, 2005 2.09pm Griffith Time

It has been a while since updating I know... and apologise.... Fraser has continually been unwell for ten days at a time with whatever it is that brings temperatures, diarrhea and a need to be on his mothers hip at all times while crying. It seems this year has been a merrygoround of temperatures, panadol and trips to Sydney. I am of course certain that it can only get better.

With the mess up with his protocol, we are not going back to Sydney until Sept 19th. While unwell this past few weeks, Dr Hopp, our local paed ordered another xray to check his lungs. He has a persistant cough, but the xray showed nothing significant. The cough continues.

On a bright note, Fraser received his song from Songs of Love!!! It is fabulously rocky and gets all people tapping their toes. If you'd like to hear it let me know and I can email it. I dont seem to be clever enough to upload it to his site, but I will try.

Till soon
Cass

Saturday, July 30, 2005 8.01pm Griffith Time

Hi!

A quick note to let you know we are still waiting for Fraser's latest local test results. Yes it has been two weeks since having them done. I make no further comment.

Also, Sydney rang this week to let us know there has been a 'stuff up' (their words), and Fraser's tests were scheduled incorrectly, and now they cant get him in when due. This puts his protocol out by approx. 2 weeks.

One day it will all go to plan.

Hope this finds you all well.

Cass

Friday, July 15, 2005 7.32pm Griffith Time

Hello!

Fraser had his local tests done today with fabulous Dr Maxwell Hopp. Bloods, urine and xrays all completed with no huge dramas. Our visit to the clinic was horrible though... Fras cried and cried and whinged and whinged.. so much in fact that Dr Hopp called us in just to see what his problem was! I told him it was teething (he has had four arrive this week!), but after listening to him for another 10 minutes, then hear how often I am getting up at night, he declared "This is not teething!" and ordered he start back on the steroid for at least 3 days and begin a preventative puffer for asthma. Lets hope these help the little man out... if I'm tired, he must be exhausted! Also today he has been vomiting.. not quite sure what that is about. Will keep you posted with results.

Love to all
Cass

Tuesday, July 5, 2005 7.38am Griffith time

Hi to all!

School holidays here for two weeks, so we have two gorgeous boys at home with their mum! Oh and add the nephews who seem to appear periodically.. so yes we have a house full of boys.

Fraser is due for his local tests here in Griffith at the end of next week... something I dont look forward to. What I do look forward to is his fifth tooth finally making contact with the world! Hopefully only another few days and we will have breakthrough!!!!

Fras has settled into his daycare centre quite nicely now, he goes Monday and Tuesday so that mum can get her office work done. He has been quite happy to wave me goodbye of a morning, but come pick up time, he is so overwhelmed to see me that he bursts into tears!!!!!! Now... I do have to wonder... tears of pure love? or pure dread??? hmmmmmmm.. we'll take the love option

Bails is staying true to the wild eight year old theme... but still presents us with bursts of affection, announcements of love, and the wonderful declaration that he wants a 'snug' with his mum on the lounge. Snug being his version of a cuddle.

Off to dress the children, make the beds, and find some entertainment for them for the day.

Love to all
Cass

Friday, June 17, 2005 8.44pm Griffith Time

I just emailed a friend, Byron, and very lazily have copied much of it to use as my journal post.

I spoke with our oncologist this afternoon, who reports that both spots are still evident, and remain unchanged. Although this is good news, and I really do know it is, I cant help but feel...... hmmmmmm.. I don't know how I feel about it infact. Everyone is very jolly about it and are all saying "this is wonderful, it's just great", and I keep thinking 'but he is just the same as he was last week! He hasn't gotten any better he hasn't gotten any worse.... it hasn't gotten any bigger certainly, but .... it hasn't gotten any smaller either!" I am disappointed with myself for not sharing others jubilation. Maybe I'll feel it tomorrow, or maybe I wont.
I am pleased to report that the asthma medications seem to have made an improvement .. he is happier, the coughing is controlled by the puffers for 3 hrs at a time, the yucky nose is gone, and his sleeping is a little improved during the night (thank heavens!). Bailey is chronic asthmatic, so I am used to dealing with this aspect of health, just another complaint to add to my list! Still, must reiterate how pleased I am the meds are helping.
Bails is class leader this week.... a very important role, as all year two students would know!!!! Who else but an 8 year old could be proud as punch to be the one to collect the lunch basket?!

Love and kisses
Cass

Wednesday, June 15, 2005 8.25pm Griffith Time

Thanks to everyone who has supported Fraser... and emotionally unstable me, this past week. Thank you so much for understanding about my inability to talk about it.

As explained in my last entry.. results wont be available to us until this Friday June 17.. so not much to tell there as yet.

After hearing about Fraser's ordeal in Sydney trying to find a vein, our local paed. has so kindly said we are not to go to pathology for the blood tests that we just couldnt get done last week. He is going to take the blood himself tomorrow morning in his rooms. As horrified as I am that we still have to find a vein.. I am much more relaxed in knowing that our wonderful Dr Maxwell Hopp will be in charge. Thank someone up above for wonderful people.

Love to all

Cass

Saturday, June 11, 2005 2.55pm Griffith Time

Well.... we are home. Want to be able to say we had an easy week.. a good run.......... but in all honesty it was just rubbish.

I have had the phones turned off since Tuesday.. just cant bring myself back to reality to be able to talk to anyone just yet. I suppose that tomorrow I should start to talk or people will really think I have lost it.

The week.. let's begin.

We arrived Sunday and had a wonderful evening with Steven and his new friend Ash(who is just gorgeous!).

Monday at the hospital at 7.30am for Fraser's MRI. Unfortunately he was not the youngest scheduled for the day, so he was 3rd on the list. This of course means much longer fasting. He coped really well though, and ended up going in just before lunch. He woke up from his general quite happy, and spent the rest of the day playing with Bailey once he finished school (he attended the hospital school for the week).

Tuesday was the worst.
Fraser began with clinic, which of course saw us waiting forever and a day. I held him down for finger prick bloods to be done, and a urine bag to be attached. Our oncology team had preliminary results from the MRI, which they were not certain did not show growth on his two hot spots, and wouldnt comment any further until they saw the scans. They did report that a 5mm 'spot' had been located on his lung, on a part that had been obscured in previous MRI's. Again, no comment on what it could be until they saw the scans. They then informed me they are all away at a conference for a week, and will not have any further results for me until Friday 17th. A long week of too many thoughts. They were concerned that Fraser is still coughing, and have begun him on a course of steroids, ventolin, and another antibiotic, treating him as asthmatic to see if it helps. They also sent us for chest xrays again, which had to be repeated because they weren't clear. From xray, it was into Nuclear Medicine for the MIBG injection. Now 2.00pm, Fraser had hardly eaten and had no sleep. Upon arriving, they asked if he had a central line or portacath.. and were prompt to call out "we have no access here" when I informed them he had neither. We then entered the injection room. Three different nurses, paeds, and pathologist, took ten goes to unsuccesfully find a vein. One hour and twenty minutes of me holding Fraser down with five others, trying to reassure him that all was okay while he was hysterical. Then when they stuck in each needle, watching his expression turn to terror, all the time while he's looking up at me, while I'm pinning him down. I will never be the same again.
The vein closed half way through the injection. I then had to hold him in the scanning machine awake, for them to see if any had entered his blood stream. These are things that no baby should have to endure. Too add to it, we did not get the urine sample or other bloodtests due to the vein problem, so we will have to try for these again when we get home.
We then had to go back to clinic, for them to check the xrays. More waiting. They said they were fine. I told our consultant what had happened, and requested that we be admitted next time overnight from his MRI, so he can keep his cannula and they do not need to put him through the horrors he went through to find a vein. He was most apologetic, and said it would not be a problem to do that. Numb, is the only word I can find to describe how I feel. I hope Fraser can never recall this day.

Wednesday, 8am. Fasting again. Back to nuclear medicine, and into the machine awake again, to ensure there is enough isotope to be able to complete the MIBG scan. Then off to the ward to begin the sedation process. Due to the low level of isotope, the MIBG took over two hours instead of 45 minutes. Thankfully he only started to rouse toward the end. He then slept most of the day, and I woke him late afternoon to have a play with his brother. I got to read most of my book, 'The Pilot's Wife', and had a cuppa and a chat with some of the other families at RM House.

Thursday was some shopping and overindulgence in good food. A visit from some family, and some more reading.

Friday home. Try to regain normality again after an experience that isnt so normal.

So I apologise to all those who have tried to call and have been redirected to the answering service. Fraser is doing fine, too many bruises on his little body this week, but he is fine. I too will be fine, just need to find my footing again, and find something to occupy my mind until the 17th.

Love to all, and will speak soon.

Saturday, June 4, 2005 8.10pm Griffith Time

Hi to all!

A quick note to let you know Fras is finally over his cold, and that we are off to Sydney tomorrow for his scans. Although the terror is feeling better, his sleeping hasnt improved, and we are all beginning our day on average at 5am. My mum and Bails are coming with Fras and I to Sydney and are staying in the one room at Ronald McDonald House... I think I may be spending quite an amount of time in the common lounge room at unhealthy hours with the Fraster.

We are booked to come home on Friday the 10th.. and regardless we will be home then. I think after a few nights of catching up with our darling Steven (Fraser's beloved godfather) that we will all be needing to head home for rest.

Peter will enjoy waking of his own accord, for the week, we are certain. I will enjoy planning a solo trip away while sitting in the common room drinking tea, at an hour too early to mention. A health farm somewhere in Europe comes to mind.. any suggestions??? Of course the suggestion needs to be backed with full sponsorship.

Love to all.... will update as soon as we get home.

Cass

Tuesday, May 24, 2005 8.07pm Griffith Time

Hi to all.. (if you havent checked in for a while, might pay to read the last journal entry)

just letting you know, Fras isnt so well! He has some sort of flu, and also conjunctivitis. We had another trip to our local paed. today who started him on a general antibiotic to help him kick it, but also sent him for bloods in case it is another type of organsim which requires a different type of anti b. Poor little fellow is miserable of course..... and so tired from coughing all night long. We have ten days before we head back to Sydney for scans so here's hoping the antib's do their job.. and do it quickly! These scans I do not want to postpone... getting a bit frantic about those shadows.

The rest of us are getting along.. Bails is doing wonderfully with his basketball, but he does get tired of me reminding him to pass to the girls as well! Peter is still working... and I am almost recovered from surgery. Life continues.

Love and kisses
Cass

Friday, May 13, 2005 4.03pm Griffith Time

An update at last!

We've certainly had a few interesting weeks here in the Holland household.

I've been trying to recover from my surgery, which is no easy task when dealing with Fraser who constantly wants to be picked up, and is not sleep ing so terribly well. Also my mental health has been pushed to its limits while feeling like I'm sitting in the middle of a 'boys' house and unable to bend over to pick up the toys, socks, food,or tissues that have been ceremoniously plucked one by one by Fraser from their box and thrown in great disarray, after being lovingly stuck to his tongue ( a sensory thing I think). Peter has done a good job.. but all women would know when I say.... "it just isnt the same". Thank goodness for my wonderful mum, Ruth, who not only has had our business (now on the market!) lumped in her lap to run, but has been coming morning and night to help me with Fras, hang out the washing, clean the house and in many cases cook the meals while Peter is working. Thank goodness for little mums called Ruth.

Now to Fraser! Have to report that all is not so well there at present. His last urine and blood came back normal... the chest xray showed postoperative distortions.. which our local paed. explained it could not be assumed what they are... scar tissue or growth, and that the xray is only going to show large changes. Hmmmmm makes me wonder why we have the xray. Fraser has been back to our paed. yesterday with runny bottom for 11 days (didnt panic and put it down to teething, even when there were no teeth arriving), a night cough for 3 nights (still didnt panic blamed it on a cool change) and then a temp for the past two days of 40c (yes I panicked). Our paed. immediatley sent him for another xray and took a throat swab as this was a bit red. He said xray was clear at first, but then rang today to report that it showed some inconclusive shadows. He was definate there is no pneumonia, but would not speculate on the shadows. We have to sit out the temps and runny bottoms,as swab showed nothing, and see where they take us over the weekend. The shadows..... well, we are due in Sydney for MIBG and MRI the week of June 5, and I know it is difficult to schedule these tests, so it is until then we wait. Trying to breathe... stay focused, and get through the next few weeks with as little outwardly showing stress as possible.

Bailey had his cross country yesterday... a very proud 5th! A gorgeous day for them weather wise... and a gorgeous moment for me to see him doing his best.

Peter continues to work madly... the water and the club really run him ragged. Oh and add to that the general running of the household while I'm not able.. yes I must remember to praise him!

Going to update some photos in the album so make sure you have a look.... there are 3 groups of pics which for some reason have really spread out.

AN EXTRA UPDATE: Monday 16th May, 11.16am.... We just had a wild weekend! Peter copped a punch in the face while working at the club on Friday, I had food poisoning (never again eating Chinese) and was profusely sick 17 times, Bailey got banned from ever leaving the house again for being a rude toad toad to his ill mother, but good news is... Fras has lost his temp, his cough, and the runs.... now if we could just get rid of those shadows on his xray we could all unanimously say "The world is a great place!"

AN EXTRA EXTRA UPDATE: Tuesday 17th May 6.27am (my dad's birthday, and also little Alice Ryan's!, Happy B'Day to Charles for the 19th!)
Forget yesterday's bit... the cough is back! No sleep for Fras and Cass.

Love and kisses
Cass

Tuesday, April 19, 2005 8.24 PM Griffith Time!

Fraser had local tests done today... with me of course being full of anxiety over them. He had bloods which were normal, urine which is yet to be reported, and a chest xray which showed postoperative distortions. These tests really only show if there are any huge problems, so from here we wait to have an MIBG scan and MRI, along with the regular bloods and urine, during the week June 5 in Sydney. These scans will show any growth of his two residual spots (in the spine and on the lung)and also of any spread or new developments.

Fraser remains well and as gorgeous as ever. He has developed an attitude of late.. becoming a little defiant and doing what he pleases when he pleases!!! The call of triumph when he is able to locate a forgotten Gameboy of Bailey's on the floor is unmistakable. The wrestling continues between Bailey and Fraser.. gorgeous to watch!

Peter is now on leave from work for a few weeks to look after the house and boys, while I have my back surgery and recovery time. The boys may never be the same!!!!

Saturday, March 26, 2005 10:34 PM CST

Fraser is doing very well!

It has now been 7 weeks since surgery to remove the tumour from his lung, and after two surgery sites having localised infection, he is now fully recovered. They removed the tumour (stage 2b) with keyhole surgery that has left him with four small scars down his right side. They were unable to remove it from his spine where it had entered between three vertebrae. MIBG and MRI scans, post surgery, have identified a second remaining 'spot' of tumour still on his lung along with the spine, and after considering further surgery, the decision has been made to watch both remaining areas for this next period to see its course of action.

Fraser has enjoyed his first birthday, and now his second easter. Too many eggs today has left us all with chocolate headaches... and the time change with the end of daylight saving has not helped at all!

Thursday, March 24, 2005 2:34 AM CST

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