Mid July 2017

Now that Priscilla's 20 Vitamin C infusions have come to an end she is really struggling with fatigue and stress to the extent that her palliative care doctor has requested a bed for a week at a local respite centre, hopefully this will give her the chance to regain a little strength...her own words...

"So I know I haven't updated you guys in a while and I'm sorry about that. My vitamin C infusions ended on June 27th. That was the 20th infusion. My energy had been really good. Since they have stopped my energy has gone back down and I find myself falling asleep almost every time I stand still. Its really annoying. Also I've been having a lot of anxiety attacks, a lot of stress. Dr. Leigh, My palliative care doctor put me on the waiting list to go to hospice for respite for a bit. I got a bed starting tomorrow for about a week to relax and unwind and de-stress a little bit. I also have an appointment at 230 with Dr. Chelsea Grant my naturopathic doctor, to see the next steps. Will try to update tomorrow once I know more"

At the weekend she and Will had the three younger children baptised...this is my favourite photo of the family...each child has 2-3 god-parents to take care of them in the future...

The family has been enjoying so many outings this summer, they've been fishing, having BBQs, to fairs and even to Montreal for a short stay to visit the Biodome there...Priss is making lots of happy memories for her beautiful family. Will and girls are learning karate and Will has joined a gym and is building up his strength and fitness.

Stay strong Sweetheart...and please keep them all close in your hearts and prayers,

Sue

xxx

Last Day of Radiation

a photo and words from Will

Well her last day of radiation so now no more chemo no more radiation just check ups until the sand runs out. Its in Gods hands now~does he call another angel home? Well time will tell.
Priscilla wants to thank everyone for the support, the words of encouragement are something to look forward to and for myself i just want to say thanks.
Also without the kids we have and all of our friends who knows what would have happened. It's been a 6 year battle but she's not ready to give up just yet.
So thanks for everything it means alot,
Will

March 2017

So much water under the bridge since we last posted!

We have welcomed Kullen into our family ...he was 6 weeks early but soon caught up and went home to meet his sisters and brother...

He was so very tiny but is thriving, growing so quickly and he has the whole family wrapped around his sweet little pinky finger!

new clothes for Easter...

Kullen has quickly reached all his milestones but Priscilla's health continues to give much concern. Chemo was started just a few weeks after Kullen's birth and continued for many weeks, Priss lost her hair again, was hospitalised several times with kidney infections that have necessitated a tube being put in to drain one kidney and again with a very low white blood cell count. The chemo has had no impact and there are now 7 tumours in all attached to her spine and making walking etc very difficult. So the specialists have decided there is to be no more chemotherapy, they will finish off the current 5 days of radiation per week and then take an MRI picture 6 weeks from now to see if it has any impact.

Their plan now is to 'keep her comfortable and try to improve quality of Life'.

Priscilla and her friends have other plans and have begun a campaign to raise funds for Vitamin C infusions, essential oil treatments and they are looking into juices that may be beneficial.
They are planning activities and sales, raffles etc and have set up a GoFundMe page for donations.

GoFundMe for Priscilla

Keeping up her spirits is a big part of helping her and the way people have quickly offered their help has been amazing. If you like to write or send her a card I will give you her address, she keeps all the cards and letters in an album that she regularly reads through if she's feeling down.

We'd like to thank especially Becky and Michael who have the girls in their home for at least 4 nights per week which takes a huge weight off Priss and Will's shoulders; Becky and Meghan care for Kullen when Priscilla has her treatments.

Thank you for reading this, it's very difficult to write about but if it will help our daughter in some way then it is worth it.

Will update again when we have more news.
Sue xx

A Robbery

The day after I wrote the last post Priscilla's quiet little town had as many as 50 cars and vehicles broken into, hers included.

The thieves stole over $300 of items such as cash, gift cards and her medications after she left her purse in there...she had taken all three children for a long bike ride and a play in the local splash pools before bed and when she got home she had so much to carry in and sort out that she forgot to go back out for the purse. Needless to say she is shocked and feels violated by this and also worried that they will come back.

Intra-venous anti-biotics were supposed to have been started for her kidney infection but that got mixed up and instead of home care nurses coming out to her she was told to be at the hospital at 7.30am the following day to have the drip started.

I just wish I could wrap her up in a gentle hug and make it all better but that will never be the case so instead we chat and stay close that way~~~please keep them all in your hearts.

Happier/healthier times 10 years ago at her aunt and uncle's house

Let's hope this coming week goes better

Sue

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