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

Words Of Encouragement

Although very few people knew the extent of my illness messages of support began to arrive...I'll copy and paste them, they are so encouraging and uplifting...

these were sent to Mom Sue,

Hi Sue
I was so sorry to hear of your step daughter's cancer diagnosis. Her little ones are so adorable, what a terrible blow for them all. I will remember her in my prayers - if you would like me to add her name to our church prayer roll please send me her first and last names and I will be happy to do that. It must be hard to be so far away at this time but thoughts, good wishes, positive vibes and prayer can traverse any distance.
Love and best wishes to you all,
Jeni "

If you think it appropriate, I'd love to mail something to Priscilla and her husband & girls. Our old neighbours moved back home to PEI a few years back and their son was diagnosed with Lymphoma shortly after. I sent them rainbow window stars that we made (one for the hospital bag to put up in hospital when Parker stayed), one for his little brother's room and one for his parents. It gave them something to focus on to connect the family when they were apart. It also gave Parker a focus point when he was enduring difficult treatments. I'd love to make them and send them to her and the family if you think it would be a good idea and not intrusive.

Hugs and love to you dear sister in Motherhood...

Sherri XO "

Sue asked at the Down to Earth Forum for support and these comments came in...

all my thoughts and prayers will be with all of you. sophie

 Oh Sue, you and Joe must be worried sick. How wonderful for Priscilla that she's been able to find so much support, and you too. Sending all my love and very best wishes that she beats this horrible disease. Mandy

I'm very sorry your family has to go through this. Sending positive thoughts.Donna

Priscilla is very much in my thoughts Sue, as are you and the rest of her family. I'm sending love and all my well wishes for the best possible outcome for her and for a smooth road through treatment. Claire

Prayers for her and for the entire family. Melissa

Priscilla will be in our thoughts every day, Sue :( I can't imagine how hard that must be for you to be separated during this horrific time.... I am so very sorry.((((((((((Sue)))))))))) (((((((((Priscilla))))))))) Sherri 

I'm so sorry. It must be so hard to be so far away.In my experience specialists from all over the world come to practice in Toronto - good thing about being a major city - so the newest best treatments are there. I'll be praying for her and your entire family. Shaylene

I am so sorry to hear this, Sue and will be keeping Priscilla and all the family in my thoughts. If anyone needs another online community to join, this is the link for the macmillan soft tissue group http://community.macmillan.org.uk/ca...s/default.aspx. There is lots of other information on the macmillan site. Sarah

Sue, I'm glad Priss finally has a diagnosis but it doesn't sound good, does it and that's a very large mass? I'm going to keep her in my good thoughts for this whole process. A positive attitude does help.I don't think I was the one who suggested Vitaman E cream before radiation. I think that might have been Tarnie but when I asked about putting lotions on before radiation to protect the skin I was told absolutely not. In fact, I was not allowed to use anything until the skin actually blistered and then I was told to use something called Aquaphor but as soon as the blisters burst open I was prescribed Biofane, an excellent cream (but very expensive) that healed everything up in no time at all. I believe Biofane is a French cream so should be available in Canada but not sure about Aquaphor. Shelagh

Thoughts and prayers with you and your family at this difficult time. Gillian

My thoughts are also with Priscilla and your family. I was diagnosed with leukaemia at the same age and also had to stop feeding my daughter (she was 9.5 months at the time). It added an extra painful dimension to it all, so I really feel for her. I hope the radiotherapy and chemo zap that horrid cancer and wish them all the very best in the tough times ahead. Sonata

I not very familiar with this type of skin reaction, but a few years back I was given something called Silvadene when I picked up a bunsen burner that I didn't know was on. It was a pretty bad burn, but healed without any scars or blistering. Another science teacher in our school also used it on a burn and they had great results as well.Wishing you and yours all the best HollyG

Sue, I'm keeping you and your family in my thoughts. I send love and hugs. Rhondajean

lots of love and hugs for all of you, praying for her and the family Nimwe

Oh Sue, what a terrible thing for you all to bear. Love, hugs and prayers for you all. Words are so inadequate at times like these. Deena

Sue, lots of hugs and best wishes from me too. Treatment can be rough, but it is doable. My way of coping is to remember why I am doing it.............and everything I have yet to do in my life. Every rads oncologist has their own way of treating your skin. Whereas Shelagh was told not to use anything, I was encouraged to moisturise my skin well for a few weeks before hand (dry skin burns quicker). Once you start rads you have to be very careful what you use (only a couple of deodorants are allowed, no talcum powder ect). Priscilla's two little ones will be her motivation...............and I will be praying that she makes it through this.Tarnie 

I use something called Resinol on DD's blisters - although from extreme diaper rash not chemo.Shaylene

Thank you all for the virtual hugs and support...it really matters.Shelagh, the idea of the cream is to get her skin in the best condition now b4 the treatment starts....I know she musn't have any on while the radiation is actually happening.Priss is a member here and will be encouraged by your words, suggestions and prayers...thank you xxxx SueMum

Very sorry to hear what your family is going through. It is really hard being so far away, I remember my Mam's hurt at not being able to see her parents when they got ill (all of family is in Holland). Best wishes for a complete and speedy recovery. Marjoh

Hi everyone,Thank you everyone for the kind words. They mean a lot. I am going to fight this with all I have for my 2 precious girls. It's gona be rough and I sure as heck do not want to go through it but I have to for my girls. Please keep the prayers coming! Priscilla 

Yes, Sue, that's what I thought to do before radiation as mentioned by Tarnie but when I mentioned I was planning to do that I was told absolutely not and I also couldn't use the Aquaphor until given permission and even then I could use it only directly after a radiation treatment or before bed so that all trace had disappeared before the morning's treatment. I was also not allowed to use any kind of deodorant under that armpit and the only thing the oncologist said I could use was cornstarch. In the middle of a Houston summer with high temperatures and high humidity was the hardest part of the treatments.Every oncologist has their own way of dealing with treatments I imagine and you have to go along with what they suggest/require. Mine was spot on with when he thought the skin would blister and it took less than a week after treatment had finished for the Biofane to do its job.

I wish Priss all the luck in the world with this. Shelagh

Here's Priscilla, Bowling Champion of Walkley! 2006 Something to look forward to, teaching my girls to bowl.