Showing category "Charlotte Update" (Show all posts)

In a good place! - November 2014

Posted by Peta Long on Monday, November 25, 2013, In : Charlotte Update 

Charlotte’s last MRI was clear and we are currently medication free!!! This is the first time since she was a baby that she is on NO medications. The anti-seizure meds took three-months to wean and have made a significant difference to her overall demeanour. After praising her for her calm and generally good behaviour recently, she replied; “I know my whinges have gone away and I don’t know why?!” She is pretty intuitive and also asked if she would have to take the medication again i...
Continue reading ...
 

Charlotte’s Treatment - Thursday, 25 October, 2012

Posted by Peta Long on Thursday, October 25, 2012, In : Charlotte Update 

After much anticipation we finally met with Charlotte’s oncologist Dr David Ziegler this afternoon. We were pleased to know that chemo would not an option for Charlotte’s treatment and no one could be more happy then Charlotte herself. We had a fairly reassuring discussion about the tumour and radiation to follow. Histology revealed that Charlotte only has one area of tumour growth, it is still anaplastic ependymoma (III) and it appeared fairly contained within a membrane when removed. Da...


Continue reading ...
 

Charlie Progress - Tuesday, 23 October 2012

Posted by Peta Long on Tuesday, October 23, 2012, In : Charlotte Update 

Sorry about the delay in feedback about Charlotte’s progress but Rod and I are taking a bit longer to get over being in hospital and still getting our heads around Charlie’s condition. She is still doing well after surgery despite a tough run of fasting for yet another MRI under anaesthetic. She has lost a lot of weight and we are trying to feed her up and keep her rested. She has been struggling with a chest infection which she needs to totally get through before we move onto the next ph...


Continue reading ...
 

Tuesday, 16 October 2012 – Operation Day

Posted by Peta Long on Tuesday, October 16, 2012, In : Charlotte Update 

Rod, Charlotte and I were admitted yesterday into the Care by Parent ward at the Sydney Children's Hospital, which is like a little hotel compared to what we have experienced with Charlotte. This ward is designed as a calm and comfortable place for pre-operation care (primarily by parents). She underwent anaesthetic the best she ever has – no screaming, fairly calm and holding the oxygen mask all on her own. It was a relatively short surgery by Charlotte’s standards and almost four hours ...


Continue reading ...
 

Latest Update

Posted by Peta Long on Sunday, October 14, 2012, In : Charlotte Update 

Hi there once again,

It's been a while, thank you to all of you who have continued to read and write and follow Charlie's progress. I personally have removed myself some what from this page, but am pleased when I return periodically to see the on going messages of support.

Obviously we are all saddened by the latest result. Our emotions are in turmoil, those of anger, fear, and sadness to name but a few. However we find much happiness in Charlie and Madeleline, they are not burdened with our wo...


Continue reading ...
 

Some sad news for Charlie!

Posted by Peta Long on Friday, October 5, 2012, In : Charlotte Update 

Charlotte had an MRI on Thursday and unfortunately she has relapsed. There is tumour growing on her frontal lobe. She is scheduled for a another scan on Thursday and surgery on the 16th. They need to ascertain whether the tumour has spread to her spinal cord and have another look at what they need to resect. We are devastated! It was hard enough the first time but this time I just feel so sad for Charlotte. We have come so far with her. She is doing really well at preschool, swimming and at h...


Continue reading ...
 

Three years since diagnosis - 11 August!

Posted by Peta Long on Saturday, August 18, 2012, In : Charlotte Update 

We are always so grateful for the time we have at home with Charlotte. I have been a little teary today because it has been three years since Charlie was diagnosed with the tumour. It seems like yesterday but so much has transpired. She is doing really well - happy, super energetic, inquisitive and hard-work!!!!

We have OT and clinical psychology appointments each week and she is making good progress. But it is not without some ongoing and taxing issues at home. I have found the past year the ...


Continue reading ...
 

A Happy Mother’s Day

Posted by Peta Long on Thursday, May 31, 2012, In : Charlotte Update 

It had been six months since Charlotte’s last scan and a few days before I developed a dull headache; trying to pretend that I was okay and not worried. I guess I do that for Charlotte and Madeleine too; not worry, that is. We didn’t tell Charlie we were going in until the night before because she really feels anxious about returning to hospital and makes certain that we are NOT staying and that we WILL be returning home! Charlotte had her MRI on the Monday before Mother’s Day and it wa...


Continue reading ...
 

Charlotte Turns 4!! - April 14

Posted by Peta Long on Monday, April 16, 2012, In : Charlotte Update 
Saturday was a beautiful, warm day and Rod
and I woke to Charlotte’s little voice bellowing “can I go and open my presents
it’s my birthday?” Those of you that know me well know that I am very fond of a
birthday and Saturday was a very special day for us all. Rod and I are always
mindful of how fortunate we are to celebrate this date with Charlie. As all
four-year-olds do (not), they ask for a big girl car seat and a Barbie doll!!!!
So, that’s what she got! Rod found a very cool booster s...

Continue reading ...
 

2012 – It’s been a while!

Posted by Peta Long on Monday, February 27, 2012, In : Charlotte Update 

We had a tremendous time away with our friends down the South Coast around the New Year. We managed to be away, altogether, for two weeks and even experienced sunny beach weather. Charlie loves the beach and is at peace at the house down the coast. She is quite a free spirit and was happy to run bare foot in the bush and on the beach for two whole weeks.  Her highlight was watching our neighbour (down the coast) pull down an enormous gum tree and use it for fire wood! She sat with Madeleine f...


Continue reading ...
 

MRI results – 10 November, 2011

Posted by Peta Long on Wednesday, November 16, 2011, In : Charlotte Update 
I never really think that I worry about Charlotte but the day before an
MRI I am always a little tense. She wasn’t keen to go back to hospital this
time and made me reassure her that we were going to have a sleep, they would
take a photo of her head and we would return home again. It has been 3 months
since we were in hospital – a great run for us! Every time Charlie has an MRI I
manage to bump into her neurosurgeon in the coffee shop as I wait for her to
have the scan and come through recovery...

Continue reading ...
 

Beck and Jemma in RUN4FUN

Posted by Peta Long on Thursday, October 27, 2011, In : Charlotte Update 

Dear All,

 

Charlotte is doing well developmentally and loves and enjoys every

minute of her day. She is, however, still a long way from sleeping

enough and Rod and I are truly exhausted. I am trying to train for the

RUN4FUN and have got the lurgy. I have some serious work to do in the

next few weeks - one hour of exercise a week is probably not ample training!

 

My friend Jemma and I are just about to embark on the 10km RUN4FUN on

November 6 an...


Continue reading ...
 

Two years since diagnosis – 11 August, 2011

Posted by Peta Long on Saturday, August 20, 2011, In : Charlotte Update 

Charlotte and I spent most of the day at Sydney Children’s today, not having active treatment but visiting a friend that is back having treatment for a relapse. I felt sad to be in hospital visiting such a beautiful family but elated that I was sitting there with Charlie and she was happy and looking great; two years since that dreadful diagnosis. We still have a long way to go and while we were in hospital today the medical sleep team at Sydney Children’s spoke with us about trialling so...


Continue reading ...
 

28 July – A little adventure!

Posted by Peta Long on Sunday, July 31, 2011, In : Charlotte Update 

After months of deliberation, Rod and I decided that I would travel to London for my sister’s wedding to Chris and Charlie and Rod would remain in Sydney. We considered the long flight and various destinations too much for Charlotte and the possibility of a seizure mid-air or in a foreign country more than Rod and I were willing to expose Charlotte to. It was hard to set off on a holiday without them both and I still felt dreadful that Rod was missing the wedding and that we still hadn’t ...


Continue reading ...
 

Charlotte’s last month!

Posted by Peta Long on Tuesday, June 14, 2011, In : Charlotte Update 

The past month has been a jam-packed, exciting and exhausting month for the family. The highlight of the last month was Charlotte’s commencement at Kids and Co preschool. Her teachers have been awaiting Charlotte’s arrival, with excitement and anticipation. I am sure not many kids start preschool with a seizure management plan, shunt management plan and a list of ‘things to watch out for’ from their Mum! But, needless to say, they have been tremendous with Charlotte who they have foll...


Continue reading ...
 

A BIG Week for Charlotte!

Posted by Peta Long on Monday, May 2, 2011, In : Charlotte Update 

After waiting throughout the Easter weekend for Charlie's MRI results, it was finally confirmed that her scan was clear. NO TUMOUR growth!!!! YEAH!!!!!

 

Charlotte also had her first observation day at preschool on Wednesday. At 10.45 she said; "Mum, you can go now!!!" I was hysterical. She has another observation day next Tuesday and then her first full day on Wednesday. I am so excited for her and relieved all at the same time. It is really nice to see her do regular things and look so we...


Continue reading ...
 

Charlie Turns 3!

Posted by Peta Long on Wednesday, April 13, 2011, In : Charlotte Update 

Charlotte turns three today! Those of you who know me well know that birthdays are always a big deal, today is certainly very special. I have been reflecting a lot on the past 20 months and really can’t believe where we are…..where Charlotte is!

Returning home after 17 months of hospital stays and treatment was bitter sweet. We were so elated to be away from chemo, sleepless and stressful hospital stays and continuous demands on Charlotte’s body; home had its own challenges.

Madeleine...


Continue reading ...
 

A belated update!

Posted by Peta Long on Wednesday, March 2, 2011, In : Charlotte Update 

Well, after a dreadful start to the New Year my mother-in-law reminded me that the Chinese New Year did not start until February in an attempt to try and restore my faith in the healing powers of a new and better year ahead! After having the seizure we returned home and allowed Charlotte to settle at home on new medication and another attempt to stay out of hospital. The combination of a new bed, sleeping away from Rod and I, new medication that makes her a little sleepless and the emerging u...


Continue reading ...
 

A New Year Update

Posted by Peta Long on Tuesday, January 11, 2011, In : Charlotte Update 

Happy New Year!
Well, we enjoyed a lovely Christmas at home and out of SCH. It was a fun day at both parents’ eating and unwrapping too many presents. Charlotte was doing really well and enjoying the freedoms of being at home and getting out and about. Despite a possible Whooping Cough scare on Christmas Eve; all was going really well. Her bloods were good and she was looking stronger, fatter and happier every day.
With that in mind Rod and I decided that we would venture down the south coast...


Continue reading ...
 

378- day chemotherapy protocol complete!

Posted by Peta Long on Wednesday, December 15, 2010, In : Charlotte Update 

We were there to watch the nurses hang Charlotte’s first bag of chemo and we were there to watch them to the last burrette down on Sunday afternoon. We have never been prouder of anyone, than we are of Charlotte. She has lived a true nightmare – 10 surgeries, tests, bloods, assaults to the body and 28 rounds of chemo. Yet, she still smiles, laughs and tonight just wanted to dance. Following dinner Charlotte and Madeleine jived to Jamiroquai’s  “Travelling without Moving” (which is e...


Continue reading ...
 

An Early Christmas !

Posted by Peta Long on Saturday, December 4, 2010, In : Charlotte Update 
The past eight days have been horrendous! Charlotte’s bloods hit rock bottom, Rod and I are really over sleepless nights in hospital and Charlotte’s pending MRI has been building subconscious tensions. While we have really felt the exhaustion of this last stay we were given the wonderful news yesterday afternoon that Charlotte still has NO tumour! Not only is there no tumour growth but her cavity is filling up slowly, the ventricles were smaller and there was noticeably less CSF (cerebral...
Continue reading ...
 

27 Rounds complete!

Posted by Peta Long on Thursday, December 2, 2010, In : Charlotte Update 

After two days of chemo and hydration Charlotte was quite nauseated and wanted to come home. The room was full and as noisy as ever! I guess even Charlotte has had enough. As the saying goes; "if it's too good to be true it probably is!" Well, after five hours at home Rod took her back to emergency; febrile and neutropeonic.

 

She had no white blood cells or neutrophils (the enablers!) so we have been in hospital since. We are in the back bay of C2 west which is enormously quieter and Char...


Continue reading ...
 

3rd last round is done!

Posted by Peta Long on Friday, November 19, 2010, In : Charlotte Update 

For the days leading up to chemo Charlotte was suggesting she wanted to go to hospital, I guess she was missing her friends, after all it is the place she has spent more time in the last 15 months than any other. However, once we got to the hospital she was repeatedly saying, "no hospital Dada no chemo Dada". She is certainly becoming very much aware.

 

Again we were in our standard room full with 3 other kids ranging from 12 to 24 months old all including Charlotte seemingly taking it in t...


Continue reading ...
 

Run4Fun and Chemo

Posted by Peta Long on Monday, November 8, 2010, In : Charlotte Update 

Who doesn’t love a good whinge about Sydney’s weather! Well, thankfully Sunday was one of those glorious Spring days and the thousands who ventured out to run for charity enjoyed their day. Like the City2Surf the atmosphere was exuberant and the support shown to the hospitals was marvelous. Charlotte was so excited to be in the pram for the run with Rod that she ate breakfast, got dressed and wanted to leave the house immediately. The SCH team (The Bondi Life Savers, members from the Hosp...


Continue reading ...
 

ROUND 25 COMPLETE!

Posted by Peta Long on Sunday, October 31, 2010, In : Charlotte Update 
On Tuesday Charlotte completed round 25 and returned home the same day. It was only the fourth time she has finished chemo and returned home the same evening for that particular round of the cycle. So, we were very excited. When she arrived home, she ran in the door and declared; “I’m back!” I have never seen a kid so energetic after missing sleep and having chemo! When I picked her up and cuddled her I said: “guess what Charlie you only have 3 rounds of chemo left.” To which she ...

Continue reading ...
 

NO CHEMO! - Tuesday 19 October

Posted by Peta Long on Sunday, October 24, 2010, In : Charlotte Update 

As we had suspected Charlotte was not going to be ready for chemo. She was as white as a ghost and I thought she may have needed a blood transfusion. So when we went in for bloods, clinic and chemo on Tuesday the bloods confirmed that her platelets were too low for this round and a transfusion would not work in time. So we are back in next week and hopefully her body will bounce back.

 

Having said all that she is really happy and doing well being out of SC.

There has been lots more sleep...


Continue reading ...
 

ROUND 24 COMPLETED - Friday 15 October, 2010

Posted by Peta Long on Friday, October 22, 2010, In : Charlotte Update 

Charlotte came home from hospital last Saturday afternoon after round 24 of chemo. It was a long and tough round for her. She was quite nauseated and very tired, once home. She has been out of hospital almost a week now and, although quite pale, is doing well. Having had a four week break from chemo (prior to her previous round) Charlotte had grown a sheath of blonde/brown hair. In fact, when we returned to hospital for this round the nurses couldn’t recognise her. But just a week later she...


Continue reading ...
 

HOME!

Posted by Peta Long on Thursday, September 30, 2010, In : Charlotte Update 

Charlotte arrived home on Saturday afternoon just in time for the glorious Spring weather (where has it gone?), my sister arriving from London and St George winning the semi-finals (Go, the Dragonsfinally!). It was one of those days when Rod and I felt a wave of relief. He was exhausted after spending the last three days in hospital on his own.  I had Charlottes cold which landed Charlie in isolation during chemo and me at home with Madeleine. After five weeks in hospital Rod and I are still ...


Continue reading ...
 

The assaults keep coming!

Posted by Peta Long on Thursday, September 23, 2010, In : Charlotte Update 

Where do I start.following Rods last post Charlotte was stablised following a torturous night of screaming and vomiting. She was listless  for over six hours and after the Neurosurgeon released fluid from her reservoir (without anaesthetic) it became clear that the ventricular peritoneal shunt needed to be implanted. She underwent emergency surgery late on Thursday night and remained stable. Since then she has had a barrage of tests because her port was not working. Despite Rod and I expressi...


Continue reading ...
 

Charlotte pulls through another Operation 16th Sept 2010

Posted by Peta Long on Sunday, September 19, 2010, In : Charlotte Update 

It was an exhausting night/day/night for poor Charlie. After removing the external drain from Charlie's head yesterday morning all went seemingly well, then around 7pm she stared to display signs of discomfort with momentary cries of discomfort and pain, by 9pm she was extremely irritable and in obvious distress followed by vomiting, she would then fall asleep through sheer exhaustion and then wake screaming again in pain hitting and pulling at her head as though being bitten by fire ants on ...


Continue reading ...
 

A brief account of the week that was!

Posted by Peta Long on Sunday, September 12, 2010, In : Charlotte Update 

Monday began with an extremely busy day at work, a quality auditor looking over my shoulder most of the day and  a broken aeroplane that needed to go by that afternoon. That all worked out well, I arrived home to hear that Charlotte had swallowed a marble like stone only moments ago. We were immediately concerned this would jeopardise the long awaited op the next day. After consulting with the emergency telephone service our minds were put to rest somewhat.

 

The surgery day was the usual l...


Continue reading ...
 

A turn for the worst - September 11, 2010

Posted by Peta Long on Sunday, September 12, 2010, In : Charlotte Update 

After being discharged on Friday we were all home together, which was such a treat. I was so excited to be home over the weekend before chemo again on Monday. I was looking forward to taking Charlotte for a walk in the pram and enjoy the warmer weather, Rod was hoping to get a paddle in and Madeleine was off to the circus with her cousins. However, we were all exhausted and nobody surfaced from their bedrooms until just after 7.30 on Saturday morning. I woke with a fright to little feet walki...


Continue reading ...
 

RESERVIOR IN….FINALLY!!

Posted by Peta Long on Friday, September 10, 2010, In : Charlotte Update 

After weeks of deliberation, contemplation, discussions, poor bloods and continuous stays in hospital Charlotte was finally able to have her operation today. As Rod alluded to in the previous post we negotiated a number of issues with Charlotte’s Neurosurgeon and decided that having a reservoir implanted would be the best option for Charlotte at this stage. The shunt would be quite a large and possibly detrimental option at this point in Charlie’s treatment. Charlotte is suffering from hy...


Continue reading ...
 

ROUND 22 Assault on the body!

Posted by Peta Long on Friday, September 3, 2010, In : Charlotte Update 

Just a quick update.

After being home for a day and a half Charlie's temp spiked meaning she had to go back in Monday evening, and was subsequently given antibiotics. I have just bought her home today(Friday). Remarkably all her levels have risen considerably and would normally be in the range for an operation. However the surgeons wanted to see how her body went with no antibiotics, the op is now on Tuesday!

 

Finally, during this last hospital stay, Beck was able to speak with the Neuros...


Continue reading ...
 

ROUND 22 Assault on the body!

Posted by Peta Long on Sunday, August 29, 2010, In : Charlotte Update 

After last weeks full blood transfusion Charlotte had a spring in her step and sweet rosy cheeks, once more. However, her bloods were not at safe enough levels to operate and only just good enough for round 22 of chemo. So, Charlotte and I went to SCH on Tuesday for four days of chemo, Rod went to Melbourne for a course and Madeleine went to Nannys for indulgence. I am pretty certain that I was exhausted from packing everyones bags before we even got to hospital on Tuesday.

 

Charlotte was...


Continue reading ...
 

NO OPERATION FOR CHARLOTTE THIS WEEK

Posted by Peta Long on Monday, August 16, 2010, In : Charlotte Update 

This is just a quick update to let everyone know that Charlotte will not be having surgery to implant a shunt for the hydrocephalus tomorrow, as scheduled. After returning home following blood tests this morning we were called, and requested, to rush Charlotte back to hospital for a FULL blood transfusion. She had virtually no neutrophils, no platelets, very little haemoglobin and a depleted white blood cell count. I am not sure how that little girl has been able to function. Those blood coun...


Continue reading ...
 

1 Year since diagnosis

Posted by Peta Long on Thursday, August 12, 2010, In : Charlotte Update 

What a year! We have experienced moments of absolute despair, anguish, elation, relief and complete exhaustion. Yet at the end of each day we have a beautiful , exuberant, charming and cheeky Charlie whose smile renews our strength to make it through the next day. She has grown into an extraordinary girl who lights up the room and puts a smile on even the grumpiest face.

 

The year has had an effect on Madeleine, she becomes anxious if either Beck or I go to hospital and misses Charlie terr...


Continue reading ...
 

Round 21 and MRI

Posted by Peta Long on Friday, August 6, 2010, In : Charlotte Update 

Charlotte had chemo and a photo shoot for the Daily Telegraph last Thursday and was home just after dinner. She is a busy girl but life out of hospital is far more pleasant for Rod, myself and Madeleine too.

She has been well and has enjoyed being at home with Madeleine and going out when the weather permits!  Today she had an MRI under general anaesthetic to check for tumour growth and the build-up of fluid on her brain. Well, there is no tumour re-growth (YEAH>>>>!!!@##$$$$) but more flui...


Continue reading ...
 

ROUND 20!

Posted by Peta Long on Thursday, July 22, 2010, In : Charlotte Update 
 
Make a Free Website with Yola.