Spectroscopy results

ok things could be worse, but could also be better: choline is a bit elevated but not much - the difference is inside the acceptable error range. But this does mean that the tumor is not shrinking. It is either the same or getting more aggrassive. Dr Tz. said we should go on with the same medication (Temodal, VP16), same dosage, and see what happens in 3 months when the next NMR spectroscopy will take place.

Yesterday (as reported by my bro and sis) dad and grandmom had a rather loud quarel on several matters including the "I know what you are going through - I nearly lost you 2 times when you were small" thing that irritates dad sometimes. He gave the also irritating answer "I nearly lose my kid every day for the past 620 days. Everytime i hold her on my hands i cannot help thinking of the day she will let her last breath just lying on my her mother's hands - and this leaves me with a huge pain which does not go away, and then the next minute another i 'll lose her attack comes to add more pain... and this thing adds up all these months and the pain gets worse and then some more....".

I am lucky i still don't give a damn about what my parents feel - I am full of life and i intend to stay so for many years to come! So there!

Yours fiighting
Lydia

Gimme a bottle of the red stuff!

Hi!
since I am having total aneasthesia for my spectroscopy tomorrow I had a blood test today which showed my HCT was 27. So I am waiting now for my blood bag to come in ( I need to have at least 30 to get aneasthesia). It was since August that I hadn't had a transfusion but last month with my respiratory problems and all I went below 25 and had a good sanguine dinner ;-).

Bye-hick-bye
Lydia

Spectroscopy this Wednsday

Hi!

My next spectroscopy (SMRI) is scheduled for this Wednsday. Please pray and think of me or even leave a message if you like! It is ok if my tumor size and cellularity remain the same, but it would be much nicer if they could be a bit lower....

I 'll post the results.

with pre-MRI restlessness and fear,
Lydia

biochemicals

My biochemical exams were just fine! The being very tired feeling I had yesterday is probably due to VP-16...

x-(
Lydia

Lenia has chickenpox now!

Hi!

My elder sister Lenia has finally goten chickenpox. George is ok now and will return to kindergarden tommorow. Still 15 day for me to return home....

Ta leme
Lydia

Rales stil there today

Hi there!

My rales and other wheezing sounds are still there :-( It has been since December that this thing is there and no idea why it comes back again. A doctor said that I passed a "silent" pneumonia, but Mrs Tzotzatou says this is not the case...
Today I had 2800, 30.5, 10.3, 150,000 which is a sharp downturn and mom and dad are a bit worried. It's this VP-16 drug probably. And I am not eating a lot... not in the mood ...

See you around
Love
Lydia

The ohter two of the team!

Hi!

These are Lenia and George, my elder sister and brother. I haven't seen them for 20 days and I miss them...

See you!
Lydia

February 10th, Back from hospital

Hi!
after 15 days in hospital due to a respiratory inflection and very low blood counts, mom and dad took me to grandmom's house because George (my elder brother, age 4) has chickenpox and I definitely would not look pretty in polka dots! Apart from that, my WBC count does not allow such serious infections.

So I will be away from home for a couple of weeks or more, depending on whether Helen (Eleni) my elder sister (age 7) catches it as well or not.

I am feeling better now, still taking Aerolin inhalations to avoid new fluids coming in my lungs. My oesofagus test (to see whether fluid in the lungs was due to not swallowing correctly) was ok and I am waiting for a spectroscopy (SMRI) to be performed next week.

Mom is very tired and needs sleep, but i 'm so happy to be out and I don't want to miss things while sleeping; so I cut off some sleeping hours which Mom doesn't really like ...

Some time soon I 'll post a summary of what has happened to me the past 21 months. For the moment you'll just have to think of me and pray for me.

See you!
Lydia

Introducing myself

Hi!

My name is Lydia and I am 2 years old! This is my first blog ever, and my parents first one as well! Since they are not digitally literate enough to make theirs, I 'll let them put their stuff here as well.

I am a cancer patient, my type of beast is anaplastic ependymoma (a type of brain tumor) and I am fighting it since I was 4 and 1/2 months. I 've had most of it resected and chemo-blasted the rest but it is still there - quiet but still dangerous.

Details of the story of my life will be posted here. So please stay tuned!

Cheers
Lydia
(c/o mom Zoe and dad Tasos)

Hope to put a more recent one soon