Friday, April 22, 2011


16th to 22nd April 2011

School holidays have come around, I am so pleased because I was becoming extremely fatigued at the end of Term, now I can have a break to rest and refresh before another busy Term.  These holidays also have two special occasions in them, Easter and Anzac Day.  Today been Good Friday is a day to think about the sacrifices that Jesus made for us because he loved us, it is a day of sadness and reflection but by the end of the weekend we will celebrate that Jesus rose up to heaven as promised.  Then on Monday it is Anzac Day, that is an important day to remember all the men and women who fought and died for our Country to make it the place that we are so privileged to live in today, we will not forget them.

Last weekend was bitter with a wind that went through to your bones and made them ache, Jarrett was running in the Anzac Relays, luckily it was at lunchtime and even though it was still cold, there were glimpses of the sun that took a little of the chill off the air.  Jarrett's team made a good start with their first runner leading the field in on the first leg, Jarrett took over and he flew, I always compare him to a bolt of lightning, he furthered the lead that the team had and when the third runner took over he also ran well keeping the team ahead, the last runner was Jarrett's coach and he kept the lead, coming over the line to get the team first place.  Jarrett ran the fastest time of the day 11:43:00, he was very happy with that time and it was a personal best from the same race last year by quite a significant amount of time.  We finished off our weekend with a delightful afternoon tea with Chris, Kerri, Noah and Violet, Chris did the Stateline Story about me last year, they are such a lovely family and it was terrific to catch up with them.

I had many appointments this week starting with my MRI on Tuesday, it is so fantastic to be able to have it in Canberra now instead of having to travel to Sydney.  I was a little nervous as I guess anyone who has to MRI's regularly gets.  I am so used to each noise it makes and now know which one is coming next, I lie there still and close my eyes while I am having it, this helps me to feel more calm.  Everything was going well until I had to have the contrast put in, for some reason the vein it went into decided to leak and it was excessively painful however I remained calm even though a huge bubble appeared on my arm and it throbbed with pain and then the vein began to bleed so pressure had to be applied to it for a while before the MRI could continue.  They decided to take some extra images to check on a couple of things they had seen that they wanted to investigate a little further and it was all over. I was so pleased to have Mum and Theodore with me for support, they are always there for me when I need them the most, I have never had this type of difficulty with an MRI before.  By the time we arrived home it was three hours later.  Mum had mentioned that it seemed as if they had not taken any images of my spine and asked about it they had said that the form had only indicated that my brain be done, I am supposed to have it done of the brain and spine every three months.  My arm remained painful for the next few days and it has the most dreadful bruise on it as well as still having the large bubble which is tender to touch and has a very squelchy feeling to it. 

My next appointment was the dentist, I am happy to report that my teeth are in pretty good condition considering the doses of radiation and chemotherapy I had.  The dentist checked my saliva ducts because the radiotherapy can affect these and then that can create problems with maintaining healthy teeth.  Mine, although not quite as good as they should be, they are a little dry, are working well enough to help keep my teeth healthy.  However the chemotherapy has caused my teeth to not be as strong, it caused some of my teeth to wear down and the dentist decided to build two of the worst teeth up to prevent decay.  Later that afternoon I had my appointment with my paediatrician, he is pleased with my determination and courage, he found out that I should of had the MRI of my spine as well, so now I have to go back for that.  There were some preliminary results through which showed that the remaining tumour has remained stable since the last MRI, however there is some concern over an increase in the size of the fourth ventricle but more will be known in the final results.  An enlarged 4th ventricle can cause hydrocephalus, this is when the CSF fluid that goes around the brain and spine is blocked from flowing through.  I have to have a lung function test and also have to see the paediatric cardiologist and have an echo cardiogram.  I have still not grown in height and he was happy with my weight. 

My last appointment was with the optometrist, my eyesight is virtually unchanged however when my nystagmus is worse my vision is not good at all and nothing can be done to help this, again it is something that I have to live with and try to manage the best I can.  One way to manage it at school is only to do work that you have to focus on in short burst, trying to stop before the nystagmus become too severe.  He suggested that I should see an opthamologist to investigate some other issues that he found with my eyes a little more closely. 

Rhiannon had taped my right knee last week at physiotherapy which had been painful and swollen with a new type of tape, it is material and stretches around the joint.  I have had trouble in the past with tape as my skin has become easily irritated but I am so excited to say that this tape did not affect my skin so I was able to keep it on longer and it gave my knee the support it so desperately needs sometimes.  When I took it off I found that my knee was feeling much better for a couple of days, however without the tape on it is starting to become painful and swollen once more.  I have physiotherapy again at the end of next week so hopefully I can have it taped again. 

I have to go into hospital on 9th May for my glycogon stimulation testing and will have to spend more time in hospital for some other tests over the next months also.  At least they are all going to be done here in Canberra so I am close to family and friends. 

Apart from all the appointments we did some Easter shopping, went to our friends Rosemary, Luke and Celina's house for afternoon tea watched a couple of DVD's and went to running training.  I am so tired this week but glad that all my appointments are over for the holidays, next week I can get that well deserved rest that I need before facing Term 2 at School.

In the footy tipping I am excited to let you know that I am leading it now, after trailing behind in the beginning I have caught up and taken the lead, I am on 27 and both Nana and Pop are on 24.  Last week I got seven correct out of the eight games.  I am hoping that my Tigers do well against the Broncos tonight, it has been tough for them so far this season with two of their key players injured but Benji has been splendiferous and that has helped them. 

This week also marks one year since my book launch, with only ten books remaining I am so thrilled that I was able to have the opportunity to share my journey with so many people while also been able to raise awareness and money for Brain Tumours.  Together we have been able to raise almost fifty thousand dollars which will help with future research.  Obviously more still needs to be done and I will continue my efforts as part of my dream to one day help find a cure for this devastating and tragic illness.  I remembered with fondness this week those whose hearts were so generous, they helped me make my book a reality:  Tess, Paul, Gavin, Ben, Carlos and all at Focus Creative, Murdoch Books, Laurence from the Printers Drawers, AXA, Geon, the Starlight Children's Foundation and my incredible family.  To all of you please again accept my heartfelt gratitude and love.

May you all have a joyous and blessed Easter with your families, may Easter bring you good times that are happy from the start, may it bring you moments that make you smile and leave a warm glow in your hearts for the rest of the year.


Anonymous said...

Dear Dainere, My partner and her two daughters have all read your book and were greatly touched by your story. Hope things improve for you and keep motivating others.

Anonymous said...

Dear Dainere, I have just finished reading your book ,also bo my daughters who are 11 and 21 have read it too. Thankyou for having it as your wish as it was a very special thing rto do . i bought it from the deakin iga near thr gym i go last year bwcause i saw your special night on the news. It was very inspiring what aterrible battle you have had the courage you needed was amazing . Has amum i kept thinking of you r poor mum and how haed it was for her. It is harder to watch your loved one sick than to be sick i think.It would of be so hard for you all and i was wanting to know where you were at now so was pleased to read your blog. I am a runner too i have just run in my first half marathon two weeks ago which was good in the past i have done all the local charity runswhich i have enjoyed. one year i did the mothers day classic for my mother in law who had cancer she has recovered well. unfortunately it touchs us all this terrible disease. i can imagine how hard it was not to be able to run you are all a very talented running daughters other sister had a cardiac arrest 7 weeks ago and was air lifted to randwick childrens hospital. she is only 6 and survived which was a miracle as 95% dont. she had surgery and her parents stayed in ronald mcdonald house too.So many horrible things happen so like you said count you r blessings and enjoy the moment. You are very brave and wish you well for the future as it is so haed still isnt it.good luck to you all enjoy easter and the eggs . regards alison

Anonymous said...

Dear Dainere,
Just catching up on your blog.

So sorry to hear the sad news about your Great Gran. My thoughts are with you and your family.

Hope that you are having a restful break during the school holidays. Take time to re-energise as it is always tiring in the weeks leading up to the holidays and it sounds like you have been very busy.

Wishing you and your family a happy and peaceful Easter.

Love from Steph D and family xxx

Anonymous said...

Hello Dainere
Thanks for the update. Lots of tests that are now just a part of your life, but a shame that the MRI wasn't so smooth. Please keep us posted on the results, I hope the test on your spine goes well. You are doing all the right things, keep it up!

Well done to Jarrett on his PB. What a lovely sister you are for being there to watch and support him.

Poor Tigers lost last night, I'm on about 25 points now. Go Girl - top of the ladder, congratulations. Watch out for your Pop though, he may creep up on you.

I pray you have a good rest, wishing a Happy Easter to you and your family and relaxing moments during the holidays.

Take care, Love always, Fran xoxo

Anonymous said...

I pray for you every day Dainere, but have been remiss in sending messages to you. My father, aged 90, became very unwell and very sadly for us died mid February. Now that life is settling down a little I should have more time to follow your journey.


Elizabeth xoxo

Unknown said...

Nice post.