Friday, August 27, 2010

Jed's Pathology

27th August 2010

Hi everyone,

It has been a while since I updated with what has been going on...... the news isn't good.

Jed's pathology came back from the US that the tumor is now an AA3 (Anaplastic Astrocytoma grade 3 - high grade glioma). The original pathology may have been wrong or the tumour has morphed into a more aggressive grade because of the high doses of chemo and radiation. The worst news is there is no treatment plan for an AA3 as it does not respond to chemo. I've been to see Prof Janet Poole at the Johannesburg General Hospital to ask her if she has ever treated an AA3 patient and she has not and nor does she know of any "local" cases. What she did know about the tumour wasn't positive..... She referred me back to the US and I'm now researching and trying to locate doctors in the US that have some experience with this high grade tumour. Thank you once again to DHL for doing all the shipments free of charge and with urgency!

I want more for Jed's life..... more giggles, more smiles, more walks and adventures. I would give up anything I own to save my son! I dream of packing his school lunch box one day and doing his homework. I dream of his birthday parties and the friends he'll make. While you look at the watch today and wish the day away so you can leave your job, I ask that time stops..... pauses and that I can live in THIS moment forever! This cancer has robbed me of everything I have ever worked for and taken away the joys I once felt but it will not take away my faith as more and more I realise the only person that can save my little boy is God, so if you want to do something for a mother who is broken, pray!

Jed is doing well, the only issue being low platelets. He is happy and full of energy. There is morning vomiting but this is controlled with the zofran.

The attached picture was taken from our little break to Emerald - where we had an AWESOME time.....

Love you all and thank you

Bon x x x
Jeddy's mommy!

Wednesday, August 11, 2010

Update with Newspaper article

11th August 2010

Hi there,

Been a while since I updated my special Jed10 supporters.

Jed is doing well. He finished his first round of temador trial chemo on the 26th of July so we start the next round in 23 days time. He tolerated the chemo so well and even his blood results were outstanding (just below the normal ranges)

We sent all the tumor slides (samples of the "monster" removed in his latest surgery) to the US for them to review and confirm that they agree with the SA team's pathology. I have heard back from them; they do NOT agree that Jed has a Pilomyxoid Astrocytoma but it is some form of Astrocytoma. The chemo we are using at the moment is for all types of Astrocytomas and we are positive that the growth is an astrocytoma due to the star-shaped brain cells called astrocytes.

Jed's tumor changed from a Pilocystic Astrocytoma to a Pilomyxoid Astrocytoma from grade 1 to grade 3 - my understanding is that with chemo and radiation treatment the tumor's get more aggressive. I pray that this is not the case with our boy once again! I'm feeling confident with the team in the US. I believe they will come back to me with confirmation by early next week. Thank you to the DHL team who have ensured that the samples arrive safely. The lastest shipment left last night and contains all the tissue samples taken from Jed during all 3 his brain surgeries. See attached article published in our local newspaper.

The CSF leak is the same size maybe a little bigger than a few weeks ago but I am not overly concerned as Jed is doing well in his physical functioning which indicates no pressure on the brain.

My prayer requests

That the tissue samples arrive safely in the US
The US team confirm that the cancer is treatable and recommend a chemo treatment that is effective
and that by the mercy of God the surgeon removed the entire tumor - this remains our prayer!!! Jed is healed, Jed is healed, Jed is healed.....

Thank you to everyone for your messages of support and love, I often feel that some may be bored with the ongoing drama of my life so when I get a message, a mail or a letter my heart rejoices! This is the hardest experience of my life and I appreciate each one of you so much.

In God we Trust!

Love and hugs
Bon x