Friday, 30 May 2014

Update

Hi everyone,

Sorry I haven't updated in a while, but I haven't heard anything either. Finally, being fed up of waiting, I started to consistently call Dr. Nicholas's office and finally heard back from him this afternoon. Apparently, he forgot about me because he never heard anything from Toronto and Toronto forgot about me completely. So Toronto took my file to the rounds meeting this morning. A rounds meeting is where all the oncologists sit together and discuss their patients with all the doctors (especially special cases like mine where they aren't sure what to do). So they discussed me at the rounds meeting today and all the surgeons agreed that I would be worse off after surgery at this point because at this point the tumor is still attached to the spinal cord and some nerves. They need the tumor to be smaller to feel comfortable with surgery.

So this is what they decided on, bear with me because it's hard to explain. They didn't give me the name of the procedure, but I will explain it as Dr. Nicholas explained it to me.
There is a special scan for neuroblastoma patients called an MIBG scan. Before the scan, I get a special radioactive injection (the initials of the chemicals are MIBG). Anyway, the chemicals are attracted to the neuroblastoma cells and light them up for the scan. This procedure which is new to Canada and ony available in Toronto (not Ottawa) is the same kind of chemical but stronger and is given through IV. It's supposed to attack the cancer cells and hopefully drink the tumor. (Wouldn't that be lovely). Therefore, I have to go to Toronto twice this summer. First time is one day for an assessment to make sure I qualify, which I obviously will but the doctors also want to see me in person and explain the procedure better. Second trip, I will get the iv infusion an then have to stay in the hospital for 5 days as I will be highly radioactive and am not allowed out in the general public. I will be in a special room with a special X-ray wall so that visitors won't get radiation from me. It will be hard for me because I hate being away from my family, especially the kids and it will be boring because I can't even go outside for walks etc etc. I will post more when I know more and when the appointments are booked.

In other news, Liam's starting to perk up from his pneumonia and we are moving to Cornwall on July 5th to a beautiful one floor bungalow house with a big yard.  It will be a new and fresh (well-needed) start.

Thanks everyone
Priscilla.

Elizabeth had some fun in the mean-time



6 comments:

Sue xx said...

Big Love and high hopes that this amazing new treatment will do the job. So happy to hear Liam is on the mend too
xoxoxooxo

Joe said...

Maybe you will glow in the Dark or turn out like the incredible Hulk or something :P

Joe said...

or a tiny weeny spider will get in and bite ya and you will be Spider Woman :) :P

J said...

I am only one of many people around the world who are thinking of you and loving you and sending all our best.

Heather Priems said...

Lets hope this procedure will do the trick. Sending all my best thoughts to you from Australia (I know Sue through the net) xxxxx

Hedy King said...

I'm so happy to hear news from you. This treatment sounds promising. Prayers going up daily. Good news on Liam, too. Babies should be perky not ill. I hope the move to the new place is smooth and hassle-free. Keep in touch and take good care. Hedy