Becky's Post

Well it's been a long few weeks since my last update on things. Kids are out of school and keeping us going none stop. So let's start with a good note before going into the not so pleasant update. 

So to start kids are going great Liam had his 4th birthday yesterday we all took him fishing in Ottawa and they spent the night with family. Kyra and Megan are in some fun summer camps and have been enjoying the relaxing time at home playing in the pool and spending lots of time outside being little girls. Mr Kullen well he is such a cutie pie, always has a smile on his face. He was is weighing in at 18 lbs now, amazing how far the little half pint has come. 

Our plans for the summer haven't gone as we had hoped. We did manage to get a little mini get away in, to Montreal. It was Priscilla, myself and our 3 girls. We had a lot of fun, we got to see the biodome and took a horse buggy tour of old Montreal. But it took a big toll on Priscilla. We have been watching her go down hill fast.

 So as you guessed the not so nice part to this update :( but here it goes. Priscilla finished her 20 vitamin c infusions 5 days before we went on our mini vacation. She was tired but pushed through it. The following week she was having a hard time walking and her foot was swelling more then ever. She went to see her doctor and she noticed her decreased ability to do things and the tired look on her face. The doctors plan was to have Priscilla admitted to hospice for a rest. It was suppose to be for one week. Priscilla pain has also gotten out of control even with the increased amount of pain meds its still at a way to high level. With her in hospice they could keep a closer eye on things. Well her week has come and gone and she is still in just as much if not more pain. Her pain has started traveling up into her ribs and arms. The only thing that has changed is the vitamin c infusions in the last 3 weeks This week has been really rough. She wasn't able to get up from bed on her own on Tues. Her legs have both become very weak to the point she can't stand for more then a few seconds. We have watched her struggle with this new problem emotional and mentally. She is having a hard time accepting her limitations. What to do now, well the hope is to get her going on the vitamin c infusions again. We are back to the fundraising in order to get her the infusions again. It is the hardest thing to have to do is sit and watch someone suffer in pain and know there is something that can help but don't have the means to get it for them. We have had a lot of success in the past with help from sharing her story. So again we are asking for your help to share the story and get the fund she will need to do these infusions. We are once again looking at about $1300 per month to do these infusions. The family CAN NOT afford these without help. Thank you for all the help and support till next update god bless everyone.

https://www.gofundme.com/2ayqm38

Thursday 20th July

Health update :

Since infusions stopped and I've been at hospice things have gotten worse. I have extreme pain in my ribs and entire abdomen area, my legs are extremely wobbly to the point where I cannot stand up without assistance and walking is painful and slow with the walker.

Well today I got great news and feel super blessed. I'm not sure yet I can name the contributor but will do so if I get permission but, a contributor (an agency) has agreed to pay for 2 vitamin c infusions per week, indefinitely!!! I feel extremely blessed and pray that these infusions bring me back to feeling better and hopefully my legs start working again too.

Note from Sue, all the money raised by Gofundme and the various events Priss's friends organised has been used up on the Vit C infusions and other medications, the balance at Gofundme still reads at around $3,400 but the account is actually almost empty now.

https://www.gofundme.com/2ayqm38

A Week in The Hospice

Priscilla has been admitted to a hospice for a week's rest and to get her pain and fatigue under control

""So, I checked in to hospice yesterday around 4 pm after my naturopath appt. This place has been truly wonderful so far. Lovely home cooked meals and staff so amazing. 
Discussed my pain with Dr. Leigh this morning, it's a new pain that started about a week ago about middle of my back right on my spine. She had increased my pump at the time and it hasn't helped me. So we are going to try steroids for 3 days to see if that helps. She also wants to call the radiation doctor to see if that can be done. I'm really not keen on the radiation idea as I feel that it actually made me worse the last time but I'm willing to look at my options.

 Also started on antibiotics as I have kidney infection again, and I just got off antibiotics maybe 2 weeks ago.

So at the naturopath appt we discussed a few options. My pain, tiredness and fatigue have seriously increased since the last vitamin c infusions. Ideally, she would like me to continue with at least once a week vitamin c infusion which would be just under 600$ a month cost. My second option is starting the mistletoe injections which is going to cost roughly 250$ per month.

So that is the update.
Thank You again for all your uplifting comments and support. I love you all"

and shortly after she posted that there was another message, so much more uplifting

""This place is simply amazing. These people all have huge amazing hearts. Will and I were supposed to have our date night tonight but Because I am here, it was going to be cancelled but the ladies overheard and made us our own date night here. They started us off with a shrimp cocktail, then supper was cordon bleu chicken, stuffed potatoes and veggies and for dessert a baked pear. So delicious. We are waiting for the bill now lol."""

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 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

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

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