How Things Are Now

So much has happened since our last update...Priscilla has again beaten all the odds and expert opinions to conceive another baby boy, due December 9th.
However the original tumour has started to grow, it's blocked her left kidney and necessitated a tube to be inserted to drain it to an external bag. It's been very painful and becomes infected very easily so she's on strong pain medications as well as anti-biotics now.
A second tumour has developed next to her left ovary and that is a serious cause for concern. Her oncologist plans to start chemo in the third trimester and deliver the baby as early as possible via caesarian section.

These are Priscilla's words

"'Saw my OBGYN today and although I haven't been gaining weight baby is growing very well. He is measuring at 23 weeks and I'm 21 weeks. I thought I was 20 but apparently i lost a week somewhere according to him lol. Blood pressure was normal and no longer a worry. I was sure my blood pressure was high because I was in more pain than usual. See him again on a month. Last week I saw dr. Nicholas and hes concerned by the weight loss because it may mean the tumor is growing. Hoping it's not. I have an MRI at the end of August and an appointment with a dietitian over the phone tomorrow to try to find ways to increase my intake. Problem is with the baby growing and the tumor there my stomach has shrank as it has no room and my appetite is non existent (unless it's Riverside pizza haha but not so much affordable to eat every day ). I see dr. Nicholas again on the 9th of August again for a quick follow up. The infection in my nephrostomy seems to be coming back a bit again too so may have to head back to emerge earlier for more antibiotics. I have about 2 days left of the original prescription. I wish there was an easier solution to that problem. Although the tube has relieved an immense amount of pain I now have pain in other areas and extreme exhaustion from fighting the infection. It seems like a lose lose but trying to keep my head up. Thank you everyone for your support."'

Counselling is helping keep her head above a water these days as she also lost her beloved father-in-law last month but caring for a busy young family certainly takes your mind of things for a lot of the time

Summer rolls on and they are all enjoying lots of outdoor time...

 Even when it's raining they don't want to come inside...

Liam turned 3 and thoroughly enjoyed his birthday party in the garden with his family and friends...

So that's where we're at today, wishing and hoping for the very best for Priss and Will and all their loved ones, please continue to keep them in your thoughts and prayers,

Love from Sue

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

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."

Liam Comes Home

From Priscilla

"""Guess what time it is???? Home time!!! Liam has been doing so well that we are being sent home . Please remember that he is still considered premature and visitors will still be limited to one a day! Sue will be updating my blog so please remember to read it. My rules will be posted along with the blog. Thank you everyone for your support and well wishes.""""

In his capsule ready for home...

From Sue
Liam is already doing so well that the team have decided to let him go home already!

He is still very tiny and his Mom is still recovering so the Specialists at the hospital have asked Will and Priscilla to stick to very limited visits for the time being.

As before would local family and friends please arrange (by phoning Priss) a time to visit and limit your visit to 20-25 minutes as Liam needs to be kept very quiet and not over-stimulated. One visitor per day will welcomed and obviously if you are unwell or have unwell family members please stay at home for now as per these instructions from the Specialist Team

We'll continue to post lots of photos of him and some with Kyra and Megan of course and thank you for your understanding.

If you didn't know already the MRI scan Priss had on Friday shows that her tumour has continued to shrink during her pregnancy...we are elated as you can imagine and are waiting to hear what treatment her oncologists will recommend next.

Much love to the whole wide world from us all
xxxxxx