No News Has Been Good News

After waiting many, many weeks to hear from the Toronto team about the radical radiation treatment they'd suggested Priscilla's Dr Nicholas has decided the following...

"

Dr. Nicholas and I both agreed that the MIBG radiation therapy would be too risky since they wouldn't know what dose is safe for an adult as it hasn't been done to anyone over 40 lbs. at this point we also agreed that leaving Toronto out of the equation was probably the best bet as they haven't done anything for me nor have they ever followed through with any of their action plans. So for now we will just do scans every 3 months an keep it at that. I'm content with that. It doesn't mean I'm in remission but it means it's currently under control and to me at this point that's the best news I could get.

 — feeling content. "

Special birthday brunch for a special lady...

Priscilla and Will and the children are loving their new home, the girls have settled happily into their new school and Liam is walking now. The first Thanksgiving dinner has been enjoyed by a large group...here's what Priscilla cooked...
"
Getting ready for thanksgiving dinner, meat pies and Turkey in the oven, ham in the crockpot, potatoes, sweet potatoes and corn on the stove. Desserts were made Thursday, pumpkin tarts, blueberry pie, peanut butter fudge and chocolate mint cookies. Just have to get the hors d'oeuvres in the oven soon and waiting for people to come. Happy thanksgiving everyone, I'm thankful mostly for my family

Liam doesn't look too sure about this pumpkin...I think he'll enjoy the 'candies' at Halloween lol

Well and truly Autumn, the family and special friends went to a farm nearby and chose a pumpkin each.The children played in a huge barn and enjoyed a tractor ride ...

Not Tarzan's Jane but our Kyra!

Thank you Mel for the great photos :)

We'd like to thank all our readers who have given Priscilla such support during the early days which were especially dark...we had no idea where she was headed or that we would welcome Liam into our family during this awful time. Much love and gratitude to you all.

Sue
xxxxx

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

An Update

Sue here and I am so sorry to have let this blog go so long without updating it.

Priscilla endured a long and debilitating round of chemo before Christmas but it failed to shrink the tumour at all. After waiting many weeks for her team to decide their next actions she finally has appointments booked next week for MRI and ct scans and something else that I can't remember, for one scan Priss must lie perfectly still on her (sore) for 2 hours :(

In the meantime we've been seeing some lovely photos of the family, Kyra has turned 5 years of age.

This is what Priscilla was told at the recent parent-teacher interview...

""Had parent teacher interview today for Kyra. Her teacher had nothing but great things to say about Kyra. In 5 months he has progressed so much and is doing extremely well with her French. She is very polite and lovable and well-mannered. Apparently she has 2 little boys fighting for her love. I was told that the 2 little boy got into a fight over her and she told them to stop fighting because they could both be her boyfriends lol. They start too young. I'm gonna have problems with that girl when she is a teenager. The only complaint that the teacher had about Kyra was that when it is time to get dressed to go outside or go home, she is slow to get ready because she is too busy talking, so now she has a special corner alone so she can get ready""

There has been very heavy snow recently in Ottawa and the family has been out to the Winterlude festivals twice this month...

Megan looks so cute here...

and Liam just keeps growing..."Wait! I've got something to tell you."

"Oh never mind, it will keep"

2 sleepyheads...

and last but not least, the scene from the front door last weekend...

Just adding a note from Priscilla regarding her scans etc Fingers crossed for better results xxx

"All my scans are booked . Have my MIBG scan booked from feb 25-27th. My MRI is booked for the 26th after my MIBG scan and my CT scan is booked for March 6th. I see Dr. Nicholas on the 10th of March. Hopefully Toronto will have had a chance to review most of the scans and let me know what the next step is."