Wednesday, 17 May 2017

Last MRI Results and a Happy Mother's Day

Well the results aren't good at all, the 7 tumours have all grown slightly and Priscilla now has a fracture of her L4 vertebrae...in her own words

"Saw Dr. Leigh this morning. Got update on MRI I had at the beginning of May. There has been a slight increase in size of the tumors and there is now a spinal compression fracture at the original tumor at verterbrae L4. Nothing they can do about it except control my pain. Only option for bone metastases is radiation and I've already had my max. But the good news is that since I started vitamin C infusions I have better pain control and using my pain pump less"

We are delighted of course that the vitamin C infusions are helping even though they are $140 each and 3 times a week...this is where the fund-raising is so important, the infusions would be out of reach without this and the GoFundMe campaign.

Mother's Day was still celebrated in style with a fabulous brunch at home and lots of cards and flowers...





and a yummy chocolate and berry pancake served with love...



Please keep your messages of support coming as they mean so much to Priscilla and Will and help them their spirits up
Love from Sue
xx

Tuesday, 11 April 2017

First Meeting At Ottawa Integrative Cancer Centre

Hallo every-one, here is Priscilla's account of her first meeting with her naturopath , Dr McDonel...

"Alright so big appointment today at the Ottawa Integrative Cancer Centre. Met with my naturopath Dr. Mcdonel.

 First off, they have not had experience with Neuroblastoma patients so this will all be experimental which has been my experience since Day 1 of this diagnosis so I understand that. 
Now she did say that they will research and the things that they have started me on and will research will not cause any harm but may or may not be beneficial. We discussed my goals today in knowing that I do have a terminal illness and in no way is this expected to be a cure but a way to prolong life and enhance quality of life.

 My two main starting goals were increasing energy and managing pain control. I have another appointment on Monday to see their General Practitioner to get the blood work done to start the Vitamin C infusions. That should start hopefully within the next two weeks. They are going to try to get in contact with the naturopath clinic in Cornwall to see if the Treatments can be given there which will lessen my trips to Ottawa as they do increase my pain as its a long ride for me. I am really hoping that it is a possibility. They are planning approximately 15 (or more depending on the outcome) of the Vitamin C infusions with a review after 3 to 4 treatments. They said I will know by then if the treatments are helping or not and if its worth continuing or not.

 I am also starting Vitamin D3 1000 IU/Day (Prevent deficiency and helps with immune support), Curcumin (powerful anti-inflammatory, helps with pain, lowers inflammation and may have direct anti-cancer actions)), Melatonin (helps with side effects including pain, appetite, energy and sleep quality. It is also an anti-oxidant which helps support immune function and has anti-cancer actions.) and Probiotics (Helps to heal the digestive tract, anti-inflammatory, good for immune system). These supplements are to be added to my daily medication list and I am to continue my current pain regiment of dilaudid, lyrica and cannabis oil.
There are other things to be added later on as needed but i am positive this is a good start. Also looking into Mistletoe injections which are an at home injection, I have some paperwork to look over for it and a little bit of research to do on it myself and cost to look into it. I will be getting an email with cost breakdown for all of these as well soon. Bought the supplements I needed to start today and will be integrating them. Also she was very happy with my current nutrition plan that we have in place.Thank you Shanna Marie Lynn for your help with that this weekend :) I also got a referral for 2 free sessions of yoga therapy. 

All in all I am content with these first steps."

As you know these treatments are expensive and must be paid for up front so Priscilla's friends and family are arranging many fund-raising activities to help cover the on-going costs~each Vit C infusion is $165CA so we are so grateful for all the donations and all the hard work of Team Pearlz.
Donations can also be made through her GoFundMe page 

Meanwhile Kullen keeps getting cuter...


Liam is enjoying the Spring weather and getting outdoors once more...


Meggie wait for Daddy to tuck her into bed


and Kyra expresses her sorrow in a letter...Mommy I wish you didn't have cancer and I love you...


staying strong together...


Love from Sue

Monday, 27 March 2017

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



Saturday, 30 July 2016

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

Tuesday, 26 July 2016

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

Saturday, 18 October 2014

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