Thursday, 20 July 2017

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.

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.

Thursday, 13 July 2017

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."""

Tuesday, 11 July 2017

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,