Tuesday, June 8, 2010


8th June 2010

To wake to the sun shinning in the balcony window and the surf rolling gently onto the soft sandy beach gave me hope for a glorious day with many positives. When we left our room to go for a walk along the beach front paths while Jarrett did his running training we found the clear sunny sky was deceiving as there was such a winter chill to the air, it was almost like being at home in Canberra. We overheard some people say that it must be snowing somewhere and I thought of the majestic mountains at home covered with a white cap of soft, cold snow.

As the sun shone more brightly the air warmed so we decided to walk from Coogee up to Randwick for my appointments. It is extremely hilly around the area and I am sure Mum had a massive workout today. My first appointment was with Judy the physiotherapist, she asked me a series of questions about how I was doing and then had me walk a little which although painful I gathered strength and did. She then had me walk along a line which I failed miserably as I just continually off balanced. She would like me to continue setting myself small, achievable goals which I will attempt with my usual determination and courage. She also spoke to my oncologist who has now given the all clear for me to use Voltaren Gel on my knee, ankle, hip and spine for pain and swelling.

Following my physiotherapy review I then had oncology clinic, I had to wait as it is always so busy on these days. My oncologists new registrar checked me over thoroughly first and asked me a series of questions about how I am feeling and what I am doing. Then after my oncologist was doing an interview with Channel Nine which should be on television on Friday he came and saw me. He told me that I am now able to stop taking Bactrim once the bottle I am on is finished but I still have to be careful if I fall ill and have to see the doctor straight away. My results are not through from my MRI as they need to look more closely at them but he said he will contact us as soon as he is informed of the results. He talked about school, my mobility and my book. He is not sure that a hearing aid will help me hear much more clearer without also having a amplifier, he is proud of how I am coping with all that is happening to me. He has been doing research into better treatment for Medulloblastoma and they have had some success with mice in laboratory tests but it is a long way off being tested on humans. He said it is because of people like me who are raising funds that this research can occur and then in the future children will not have to face the same side effects as I have had to endure and maybe even closer to finding an eventual cure.

I was given information about my peripheral neuropathy, it is damage to the peripheral nerves which are the nerves outside the brain or spinal cord. Even though I feel so much discomfort in my muscles and joints the real damage is actually to the nerves that control the muscles. These nerves are made up of special cells that carry messages to and from the brain and spinal cord. Damage to the nerve is often caused by a breakdown of the myelin sheath that is the coating around nerve fibres that act as electrical insulators. There is also direct damage to the nerve cells from the pressure of the tumour. There is no treatment that can cure or reverse nerve damage but treatment is directed towards symptom management. I need to keep the areas warm as weather changes will affect it. There are prescribed medications to control the pain and tingling but they have side effects of their own. So this condition is yet another part of my every day life and I have to learn to cope and live with it.

It was realised that I had not been given blood forms and I should have been, so I had to go from that appointment to have bloods taken urgently before my lumbar puncture. I went to SEALS and had a finger prick test done, I knew my platelets must all be back to normal as it did not flow easily and it also began to clot part way through it.

The day was flying by and because oncology clinic had taken a while and I had to have bloods, I had missed my Occupational Therapy review, however Renee came and visited me on the ward before my lumbar puncture. She went over some techniques I can use to assist with my peripheral neuropathy including in cold weather when having a shower not going directly into a hot shower but rather gradually warm it. Some fingerless gloves will help my hand also and I should wear them even at school during the colder months. My knee, hip and ankle are a little more difficult to assist but the electric blanket and thermal wear are a start.

Liz is involved in a project to raise funds for The Brain Tumour Rehabilitation Program. It is a CD called The Skat Kats and they are family and friends of babies and children being treated for Brain Tumours along with Celebrity guests and cancer survivors themselves. You can read more about it at http://www.skatkats.com/. I was fortunate enough to be given a copy of the CD and hope other people will also support this project.

I gave Liz, my Oncologist and Judy my physiotherapist copies of my book, although I should have asked my oncologist Dr David for my gold medal he had promised for not being admitted to hospital during my chemotherapy for a temperature before I gave him his copy!

I felt so nervous waiting in the ward for my lumbar puncture, although I am under anaesthetic when they perform this procedure it is very uncomfortable afterwards. It was finally my turn, Mum and Theodore came into the operating theatre with me, Mum had to leave once I fell asleep but Theodore as always, stayed. I was given gas to put me to sleep first and I drifted off hearing the anesthetist comment I was smiling and so happy. I woke up in recovery had some observations done and then I was taken back to the ward where Mum and Jarrett were anxiously waiting for me, I smiled at them and they both gave me a hug and Mum gave me a kiss that Gavin had sent to me, he had rung while I was in theatre.

After having a lumbar puncture you have to wait for a least an hour prior to being discharged. While I was waiting the Endocrine Doctor whose appointment I was unable to attend because my lumbar puncture was being done at the time, came to see me on the ward. She wanted me to have some blood tests tomorrow, when I was given the blood form, it is two pages of different blood tests, I also have to do a stool sample to be tested. They are checking my thyroid function, hormones, cortisol, iron, Vitamin D and antibodies. There is also talk about me having an endoscopy to check internally to see if everything is functioning correctly inside my stomach. She was talking about me having growth hormone replacement looked at next time I am in Sydney as my growth has plateaued, they will also look at estrogen patches at this time also to bring on puberty. I sometimes feel like this is just never going to end, I know I am not like any other normal twelve year old girl but I wish I was when I hear all these things.

Finally, I was given the all clear to leave the hospital and return to the Crowne Plaza, it was dinner time. My spine is a little sore now and my knee, ankle, buttocks and spine are so painful, I am hoping to have a decent night sleep ready for my day tomorrow, I have a blood test, Endocrine measurements and we are meeting with Janine from the Sydney Children's Hospital Foundation.

I am still feeling anxious about my MRI and lumbar puncture results and now with the blood tests I have to have tomorrow I am a little concerned what may show in those results. This may sound strange but one positive from today is that I can have my ears pierced now, this may seem something silly to be excited about but in my life of so many lows it is a huge high.

It does not take one star to fill the evening sky, it takes millions. One person can have a dream and it can become a reality with the generosity of many and replicate that evening sky.

Thank you to everyone who has been writing beautiful messages of support to me, I truly appreciate them they keep my hopes high.


Anonymous said...

hey dainere i am so sorry i hope u r enjoing coogee has i used to live there it is sensational. i hope you r ok.

your old friend jess(if you remember from holy spirit)

Anonymous said...

Hi Dainere,

I can't wait to see you with your ears pierced! How exciting it will be for you to be able to choose some pretty ear-rings to wear.

Lots of love and warm hugs,

Anna xoxox

Anonymous said...

Dear Dainere
Today was certainly a very big day for you but you did have a couple of positives, you did take some steps at physio and you can at last use voltaren to help with the pain. It is funny that they are suggesting a lot of things that we already suggested and that you have, like the electric blanket and the thermals. Pop did suggest fingerless gloves at one stage too but not for the purpose that the physio suggested. It seems it is very important to keep warm so you will really have to rug up when back home.

How about that, you can finally get pierced ears. Have you any special requests for earrings that you might like?

You do have another big day tomorrow, and hopefully all the tests will lead to you getting some more help and relief. We also hope and pray you get good results from your MRI and lumbar puncture.

We will have to check out that website you gave us in your blog. It is so good to hear they are trying new treatments for brain tumours and that your contribution is really helping financially.

Keep up your spirits and never say never. All our love
Nan and Pop xxxx oooo xxxx

Anonymous said...

Dear Dainere

I hope you get some sleep tonight and relief from all your aches and pains. How
fantastic that you will be able to get your ears pierced. I bet your first ear rings will be pink.

Stay warm and we hope all goes well for you tomorrow.


Jenney, John, Sophie, Josh and Ben

Dianne said...

Dear Dainere,

Life throws challenges at all of us and you are taking yours on head first. You manage your life changing challenges amazingly well. Remember - Normal is a setting on the washing machine.

You are the same lovely girl as you always were, as family and friends all know and care about.

Sleep well and hope you wake feeling rested and well.

Lv Dianne xxxx

Anonymous said...

Dear Dainere,

What a busy day you had! Hope that you have a restful night and some good news tomorrow.

You are always in our thoughts and prayers.

Keep your spirits up. You have had more than your fair share of challenges and you face each new challenge with such a remarkable strength.

It must be nice to have Jarrett and your Mum there with you.

Hope that it is warmer by the sea tomorrow.

Our love to you and your family,

Steph, Mauro, Luke and Louisa xxxxx

m_monicascott said...

Hi Dainere,

What a full few days. Phew!! I am exhausted thinking about it. Have you thought about being a doctor in the future, you know a lot of stuff some of the doctors I work with probably dont know.

Your bravery is truly inspirational and something I think of all the time.

Your photo on the Canberra Weekly is so gorgeous, your eyes are shining. Eyes are the window to the soul and yours is obviously beautiful.

I can certainly understand the excitement of ear piercing, it is great to feel girly, I bet lots of pink earrings for you (maybe not at school though, I believe Mr Anderson doesnt like colours in earrings much hahahaha)

I hope the Sydney sun shines on you and your results from your MRI and Lumbar puncture are what you hope for.

Thanks for continuing to share your story

xxxxxxxxxx Monica