Wednesday, 23 May 2012

May 22nd - Toronto Visit.

Had an appointment in Toronto yesterday. Mel and I left at 330 am to arrive for the 1045 appointment time. We had a fairly good trip up, stopped a few times for coffee for Mel and tea for me and a 730 am muffin breakfast. We hit Toronto at about 8 am and sat in traffic barely moving for the last 18 km. Took us 2 and a half hours to go the remainder of the distance. We arrived to a very packed clinic at 1030 am and registered for my appointment. We then sat in the big waiting room and didn't get called in until 1230. Then we sat in the smaller waiting room for another 45 minutes before someone came to speak to us. We saw Dr. Gupta who is the medical oncologist that has been guiding Dr. Nicholas on the chemo protocol that I have been on. She said my scans only show tumor stability and that the chemo has not done anything. She believes that my tumor is chemo resistant and doesn't understand why because the only other two cases that they had of adult neuroblastoma in the past 10 years were extremely responsive to the chemo. So therefore, chemo is being discontinued. To me, that is great news. Chemo has been very harsh on me. I've spent 90% of the last 3 months either hugging the toilet or hospitalized. Dr. Catton the radiation oncologist was also in the room and told me that I was very "unique". I asked him not to use that word as it's not a good thing to hear in this particular case. I don't want to be unique. I WANT TO BE CURED... Afterwards, Dr. Catton proceeded to explain that they have high hopes that the tumor will respond well to radiation therapy. And spent the next ten minutes trying to convince me to do the radiation therapy in Toronto, which would be half hour rounds daily, Monday to Friday for 28 days. I explained to him that I don't have the finances to spend a total of 5 and a half weeks in Toronto and I don't want to be away from my husband and children for that long. He finally agreed to find someone in Ottawa and work with them and have the radiation done down here in Ottawa. So within the next two weeks radiation should be started in Ottawa. Following the radiation I will get a 4 to 6 week break and then finally surgery. They are saying sometime near the end of August, beginning of September. Hopefully the plans stays. We ended up eating in the little cafe at the hospital and then leaving Toronto at 130 pm and drove back with fairly no traffic. Stopped once at Burger King cuz I was craving a whopper. And stopped for gas. Got home fairly late in the evening and tried to relax. I feel some disappointment towards the whole appointment because I spent a lot of money and time to go up there, with not the best of strengths as I am still recovering from my hospital stay and am still on antibiotics. I didn't even get an exam or anything while I was there and felt that the doctor's were rushed and I didn't get the answers I went up there for. A 13 hour total drive there and back for a 15 minute appointment that in my opinion, could have been done over the phone... I am seeing Dr. Nicholas on Monday and want to mention to him that it was a very hard and expensive trip to make for a 15 minute conversation. Maybe they will consider that before sending me up to Toronto again?  I am going to post in the neuroblastoma support forum and start asking questions about chemo resistance and what they found the next steps were. I've met 2 or 3 adults in the forum that have had adult neuroblastoma as well. Maybe, they will have some answers.

With hope,

Tuesday, 15 May 2012

Back in Hospital

Not good news today after all. Priscilla woke up yesterday morning with a high fever and didn't leave for Toronto as planned. She was admitted to hospital again and given platelet and red blood cell transfusions to improve her blood count. 2 transfusions later there is still no improvement so she will there until Thursday now.

The condition is called "Febrile neutropenia....
Blood counts were extremely low (basically non existent they said) so had a platelets and a red blood cells transfusions." It is something that chemo patients are very susceptible to so let's hope she responds quickly to treatment.

As before she will not be permitted visitors which is very hard on her babies and Will and herself of course.

Priscilla's Toronto appointment has been re-scheduled to next Tuesday.

Friday, 11 May 2012

Off To Toronto Again

Priscilla has had a phone call today advising of an appt in Toronto on Tuesday morning with her radiologist, Dr Catton, and her team. She was not expecting to hear from them until all the chemo had been finished so we're quietly optimistic that the recent scans show more than we thought and that they may indeed will be starting radiation soon.

It's a 5 hour drive so she will leave home at 4am, her friend Louise is taking her this time. Priss is also going to look into the "park and ride" system on the outskirts of Toronto as the morning rush hour traffic is horrendous.

We'll let you know the outcome once Priscilla gets home on Tuesday night. She also sees her local Dr Nicholas on Monday afternoon, perhaps he'll have some idea why Dr Caton wants to see her.

I love this photo taken the first day in Canada for me in 2004. Priss had just driven us from Toronto overnight and we were enjoying a huge breakfast at Dunn's on Elgin Street...the breakfast cost was all of $1.99 back then with bottomless coffee cups! Gerry looks like he enjoyed his too :D
 Priscilla is wearing my new sweater...and I never got it back lol

Wrestling with Dad a few days later

and a cuddle with me....ahhhh Priscilla you are much loved, have a Happy Mother's Day xoxo

Tuesday, 8 May 2012

A Bad Reaction

Must apologise for the lack of recent posts, Priscilla has been getting through each day as best she can, the drugs make her very sleepy but her beloved mother in law is there caring for the little girls so Priss can rest when she needs to. Her birth mother goes over every Friday and helps with the housework and that is much appreciated too. Bless you both.

On April 30th Priss met Dr Nicholas for the results of the scan done the previous week. The report was that  the tumour has retreated from the spine...but because scans weren't taken just before treatment began he cannot say that the tumour is shrinking but he feels it has certainly stopped growing so she began Round 4 of chemotherapy this week. Unfortunately Priscilla had an allergic reaction to the doxorubicin...she had this same reaction last time but it was attributed to the mscontin that time. Treatment for swelling of the face was benedryl. Now we know.

Another step recently has been for Priss to re hydrate herself at home through the cathoport.

So that is the news up to date, Priscilla and her family have 2 dogs, a chatterbox of a cat and 2 budgies so there is much going on all the time...I think that pets are the best thing ever so here are Dubby, Puss and Elmo...

Dubby Boy

Puss whose name will remembered after I post!

Elmo Basset Hound

That's all for now but we thank you for your thoughts and prayers,