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!
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!
Dear Jed's Mom: My four month old daughter was diagnosed with an AA3 a few weeks ago. They took out the tumor and we are in the process of confirming the pathology. Let me give you the names of some doctors who we have met and who have treated this type of tumor. please understand that modern medicine does not have a set protocol on how to treat this, so the treatment regimens may not match. Seek out Dr. Ira Dunkel at Memorial Sloan-Kettering in New York City. He has published on this tumor and has doen research on it. Consuly Dr. Peter Philips at Children's Hospital of Philadelphia. He told us yesterday that in our case he would treat with chemo and a proton radiation that limits the radiated area of the brain. there is also Dr. Finley in Los Angeles who used to be at Memorial Sloan- Kettering and then New York University. he has spearheaded the Headstart protocol. I hope this is helpful in some way to you. May our children have a speedy recovery with the help of God. May no one suffer from this awful disease. Ben Menasha, father of Aviva Menasha
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