Thank you

Thank you everyone.  The support shown to Shawna and her family has been amazing and inspiring.  I have heard many times how hard it has been for those who couldn't attend the service.  It was a beautiful celebration of Shawna's life.  Shawna picked the music, scripture and other details that made us feel so close to her.  Nothing more so than a breathtaking video of her from a church service earlier this year.  Her words were so profound, so honest, and so true.  Her voice pure and full of love and faith.   Beautiful words were spoken by Will, family and friends.  The worship team she spent so much time with sang just for her.  The love in that room was tangible with hugs, stories, tears, and laughter at the reception.  Thank you to those who attended, and for those who could not, please know your love and best wishes were felt from afar.

There is a special service to remember Shawna at St. Mary's Roman Catholic Church in Fort Frances on Sunday, November 4th @11:00am.  The address is 209 Victoria Avenue.  Phone # is (807) 274-5233.

It has been an honor and privilege for me to contribute to this blog.  Alexis will have this always as a way to remember her Mom's journey and read posts from those who loved her through it.  God Bless.

Terri 

Service details

Our chance to gather together to say goodbye to Shawna is a precious time.  Please join us at 1:00pm on Saturday October 20, 2012 at Bow Valley Christian Church, 5300 - 53rd Avenue N.W. in Calgary.

Thank you for respecting the family's wishes of privacy and peace during this time.  Will and Alexis are holding up well and now welcome phone calls from those who wish to offer expressions of love and support.

If anyone has any questions, please leave a message on the blog with contact information and I will contact you directly to help out any way I can.

God bless each and every one of you who have been on this journey with Shawna.  What an honour it has been for us to be on this journey with her.

Terri

Peace

Shawna died peacefully in the late evening of Monday October 15th. 

In her final days, as all those before, she was surrounded by love.  Her last day included time with Will and Alexis and the constant attention of her parents.   

It is time now to pray for rest for everyone who has lovingly cared for her.  Linda and Willie have been completely devoted throughout this journey. I have witnessed mothering at it's most profound, most loving, and most difficult. Linda has cared for Shawna tirelessly with grace and gratitude.

The staff at Sarcee Hospice provided wonderful comfort to both Shawna and her family.

I will post details regarding the funeral service when they are finalized.

Thanksgiving

Thank you everyone for your continued love and support, your birthday wishes, and ongoing prayers.  Today is Thanksgiving, and I know Shawna would want us all to be truly grateful for our many blessings.  I know she is grateful for her family - her devoted husband Will and amazing daughter Alexis.  Her Mom and Dad - Willie is back in Calgary and he and Linda are by her side through this journey.  Derek and his family supporting and loving her from afar.  She is thankful for the staff at Sarcee hospice who are giving her wonderful care.  She is grateful that her symptoms are relatively well controlled - medications being changed and adapted as her symptoms change.  She is thankful for the wonderful flowers from friends and family, Alexis' beautiful decorations and the yummy treats she has been enjoying.  Most of all, despite this long fight, she is thankful for 38 wonderful years with a beautiful family and amazing friends.

Linda has been spending most nights with her.  Sharon, Christine (back in town for a few days) and I are taking shifts to give Linda some rest.  She enjoyed her birthday last weekend.  Will and Alexis spent the afternoon with her and brought scrumptious cupcakes.  Linda, Sharon and I spent the evening with her.  We watched her blow out candles and shared one of her favourites, carrot cake.  She even sang Happy Birthday with us.  Amazing voice, even now.

This is a slow journey, but we are grateful for every moment we have with her.  I know many of you have been awaiting news - thank you for your patience and respect.

Terri

News from Shawna

Hi Everyone.  Shawna has made some notes with her Mom with news she wants to share.  I will write as she has dictated so you can hear it directly from her...

- sleeping going better with Mom staying in the room with me.

- Dad left for home Saturday.  He had certainly got to know his way around calgary; thank goodness for the GPS!

- helped Alexis with math homework the other night - felt good to tax my brain.  Math was one of my favorite subjects in school.

- Alexis seems to be settling back into the school routine.

- soccer tryouts are over - she is waiting for her game and practice schedule.

- guitar lessons will be happening again this year.

- Will is busy working out the house routine.

- my room in the hospice is quite large and nice and bright.  Sharon re-arranged my room.  I have family pictures, beautiful flowers from friends and a Build A Bear from Alexis to keep me company.

- my friend Emily (Queen's roommate) was visiting until Saturday and Nat (other roommate) was here earlier last week.  On Wednesday, Emily and I enjoyed a tea (weekly event at the hospice) and of course dessert.

- some days I am more alert than others, but all-in-all I have settled into my new home.


Shawna's symptoms are being well controlled.  The staff at the hospice is fabulous.  Sharon and I spent the evening Friday (Sharon overnight).  The palliative care physician was in and was amazing.  He answered all of our questions, and was fantastic with Shawna.  He even drew a graph at her request to better explain the information he was giving.  Her Mom will be sleeping at the hospice with her to provide support throughout the night.  Will and Alexis will visit after school, maybe for some more help with homework!

She has asked that people not visit unless someone contacts you.  She is only able to visit for a few minutes a day and she would like to spread it out.  So as she requests to see people, we are phoning and scheduling visits.  Thank you!!

Shawna is up to date with the blog posts - she enjoys them all.  Thank you for the words of love and prayer, scripture verses, and the funny stories.  She loves hearing them all, and I think all of us who love her love reading them too!

Terri

At Sarcee Hospice

Shawna made the decision yesterday not to wait for a bed at Rosedale hospice.  She felt she needed to go sooner and asked for the first available bed at any hospice.  At around 1:00 yesterday afternoon, she made the brave walk down the stairs, lay on the stretcher and rode in the transit van with her dear friend Natalie to Sarcee Hospice.  Natalie was able to spend yesterday and today with her before flying home.  Emily is en route here today and will stay to be with her until the weekend.  Christine had to say goodbye to flew home and be with her family.

So far it has been a rough transition for her, with a bit of confusion and disorientation.  The palliative care physician visited today and reported that this may be alleviated with a change in medicine and a couple days of adjustment.  Will, Alexis, Shawna's parents and Sharon took shifts yesterday.  We will take turns spending the night with her to ensure she's not alone.

There is evidence of slow changes, but despite her wish to be with the Lord her body is not quite ready to let her go.  We're encouraging her to spend her time with loved ones, doing things she enjoys as much as she can.

All the blog posts are being read to her, so for those words of love and encouragement, we thank you.  Her smile is still radiant, her beauty shining through.  I will update again as new information arises.

Terri

UPDATE  - Shawna just phoned.  She wants everyone to understand that she may communicate by text to you, but she is having a hard time putting thoughts and words together.  She may be texting during the night as she is often unaware of the time.  Her messages may be confusing or disorganized, and she just wanted for everyone to be aware.  She contemplated not using her phone at all, but I assured her everyone will be thrilled with any message she sends us and we'll treasure every letter and word.  Thanks everyone.

Transitioning to hospice

After much thought and prayer, Shawna has made the decision to go to hospice.  The home care team is aware that she will take the next available bed at Rosedale Hospice.  This won't happen today, but could be as soon as tomorrow or Monday.

She just phoned me and has requested prayer for this transition - for herself, Alexis and Will.  She also requests prayer to feel peace now with this decision.  She is doing okay today, with symptoms under control.

Will post again after the move to let everyone know how she is doing.

Terri

Quick note

Thank you to everyone who has been providing food - it has been fantastic!  However, they're running out of room to store it so they've asked if everyone can hold off on deliveries for a week until they can get through some of it.

Thank you.  Everyone has been amazing!

Terri

Tuesday September 11th

An emotional 24 hours.  Our Shawna is strong.

Will had his surgery yesterday morning and reports were that all went well.  Once Shawna had the relief that he was okay, she felt it was time to be with the Lord.  She spent much time praying yesterday and made it clear she was ready to go.  She communicated this to her parents, Will and Alexis.  Christine noticed a sense of disconnect with everyone and then a significant change in her breathing, so Sharon and I joined them and spent the night.  Shawna was very much at peace.  But, after more than 9 years of training her body to fight, it wasn't ready to let go.  So she awoke this morning, and has had a fairly stable day.  She drank and ate a bit, and had some special time with Alexis and Will, who is home from hospital and doing well.

This is definitely a difficult time for her.  She is finding it hard to be "in between", but realizes that God isn't ready to take her home.  Although she is grateful for time with her family, she is definitely tired and ready to be done.  And so, we live each day with thanks that she's here, supporting, caring for and loving her.

If it looks like she'll be brighter for the next while, she may call for visitors.  Some changes have been made to her medication to better manage her symptoms, and home care has been a great support.  Continue to pray.  Shawna and Will want to say thank you for all the food that has been dropped off, all of the prayers and offers of help and also for everyone respecting their wishes and not phoning or texting.  Thank you!!

Terri

Saturday September 8th

Shawna is still at home and she has made it very clear that is where she wants to be as long as she has full support for medication administration (all subcutaneous) and general care.  Home care only provides 72 hours of RN care the whole time she is at home, so we are using those hours wisely.  Christine flew in last night and her parents arrive today.  Between Sharon, Christine, myself and her parents, we'll provide her around the clock care for now.  A few very special people have also offered to help, and they will be added to the rotation as we sort things out.  All of this will hopefully be arranged and finalized soon.

I had the night shift last night, and she was relatively comfortable.  She had breakthrough morphine and gravol this morning, but otherwise her scheduled meds kept things under control.  The RN coordinator is there now, sorting out some additional meds and making sure we have what we need.  Christine is there today and Sharon will take the night shift.

Will is scheduled for surgery for his bone flap on Monday and prayerfully all will go well and he'll be discharged home Tuesday.  If Shawna should deteriorate quickly, the surgery can be changed last minute.  Shawna's brother Derek, flew in yesterday from Ontario and has been able to have some quality time with her.

Yesterday a Hospice Calgary counsellor spent the morning with Will and Shawna to make a plan and offer support as they prepared to talk to Alexis.  That conversation was had yesterday after school.  Alexis is doing as well as can be expected.  We had a snuggle on the couch and played a bit of Wii before breakfast.  What an amazing little girl.

They continue to ask that people do not phone the house or text Shawna's cell phone.  The phone continues to ring quite a bit during the day and they would like to minimize noise and disturbance as much as possible.  If you like, post questions on the blog and I will check the posts regularly and someone will respond/answer as soon as we can.

Terri

Update

I just left Shawna.  She has asked me to update the blog.  She managed to write a bit herself, so I will quote her here and fill in the blanks after....

"Had hoped to perk up a bit @ home since d/c from hospital, but really feeling quite low in energy and relying on strong meds to control the headaches & nausea.
- Had hoped to be able to visit with more of you, but find talking quite draining.  Also, I have double vision in my left eye from pressure on the nerve, so reading, typing and texting are also challenging."

That's as much as she was able to write.  I laid in bed with her tonight and had a long talk.  She has taken a significant turn for the worse this week.  I called her Mom and Dad, who will be returning to Calgary.  They have started giving Alexis more information and will give her the full story tomorrow.  She said she feels such a change in how she "feels on the inside".  She has fought for so long, that she's not sure how to let go of the fight.  She feels she has less time than she expected.

She knows everyone will understand that she is no longer having visitors.  She has asked that no one call or texts.  She will contact people as she has the energy to make arrangements for a visit.  The plan is to talk to home care to discuss maximizing their services.  The decision may be made to go to hospice, but we're praying that she is able to stay at home.

Terri

Visitors

Shawna is home and transitioning well.  Nausea, pain and fatigue are being fairly well managed.  Shawna has organized all her medications and has a schedule that is working well so far.  Alexis is thrilled to have her home and seems to be handling things well.

Shawna is starting to have visitors, but will need to have notice and scheduled visits.  And of course, all visits are dependent on how she's feeling.  Each day has its challenges, and how she feels changes from one day to the next.

Feel free to call for a visit.  Shawna will handle her own schedule and get back to everyone when she can.  Please be aware that there will be no visits in the morning, so plan to see her in the afternoon or evening.

Thanks,
Terri

Transitioning Home

It looks like Shawna will be discharged home tomorrow.  She is off intravenous fluids and has had some changes in medication in preparation for discharge.  She went home on a pass Sunday afternoon, which went well.  She is having one more change in medication today and if all goes well, she'll be home in her own bed tomorrow night.

We met with the palliative physician this morning, who answered all of her questions and will make the appropriate arrangements for discharge.  She will be supported at home by palliative home care team.  She has arranged for needed equipment, medications and all other necessities.  She is still very much in charge of her own care.

After she has transitioned home and is settled, I will post her progress and let everyone know when she can have visitors.  Pray for a comfortable trip home tomorrow.  I will update as news become available.

Thanks,
Terri

Our dear Shawna

An update for you...

This morning, the oncology team told Shawna that there are no further treatment options for her and they will be taking a palliative approach.  The dural biopsy showed that the cancer has metastasized to her brain.  Her goal is to be discharged home early next week, but for that to happen her pain has to be managed without intravenous support.  She is hoping to go home on a day pass this weekend to get a bit of a break from the hospital.  Shawna is at peace with the news.

Alexis knows some, but not all of the details.  She is aware that her Mom is hoping to come home next week.  Shawna will have palliative home care to support her, Will and Alexis.  Shawna's Mom will also stay on to help support them.

I have spent time with her lately, and she looks good.  Beautiful, as always.  She is feeling well enough to get up when she needs to, eat when she's hungry, tell stories and share a laugh.  I am so very proud of her and amazed at her ongoing strength.  Sharon has been an amazing support, getting medical details to help facilitate her care and keep Shawna aware of all that's going on outside her door.  Christine is flying in tonight, and we will all be with her to share all that's happening with her and to kiss her goodnight.

I will continue to keep you all posted.  Pray for her - comfort, peace, and time with her family.  Pray for Alexis and Will.  May they all feel our love and support.

Thanks.
Terri

Update - August 19th

Hi all.  Here is an update from Shawna and Will.

Earlier this month, Shawna was admitted to Foothills Hospital.  She had been to Emergency twice for pain control and because the doctors could not determine what was causing the pain in her head, she was be admitted for i.v. pain control and investigation.  It has been rough, but the physicians have been able to help manage her pain and nausea.  Her relief has been inconsistent however, and the team has been monitoring her closely.   She has had a lumbar puncture to test her cerebral spinal fluid for possible infection, the results of which were clear.  She had a dural biopsy on Saturday, the results of which won't be back for several days.

Shawna has, as always, been amazingly strong.  She is unable to have visitors due to her severe pain and nausea.  But she knows we are all thinking of her and is grateful for everyone's support and prayers.  Thankfully, her parents have arrived from Fort Frances to help them and Alexis through this admission to hospital and transition back home.

The blog will be updated as we have more information.
Thanks,
Terri

August update

It's been a month since my last note, and I'm starting to get curious and concerned emails and phone calls, so it is high time to fill y'all in on the latest.  (The "y'all" is just to make you smile...I may live in the west, but I haven't embraced it to that degree!)

So, to be honest, I've felt lousy much of this summer mostly due to fatigue and aching jaw pain and numbness.  My bood tests were initially fine, but towards the end of July my hemoglobin (red blood cells) dropped as low as 76 (normal is over 120), so I got a blood transfusion.  It helped a bit.  I've also seen a dentist and oral surgeon about my jaw, but they think it's cancer related rather than a dental issue.  One of the drugs I'm on has a rare risk of bone death of the jaw, so I have stopped that medication for now.  A CT scan has ruled out new cancer spots on my jaw, so that's a relief.  It doesn't seem to be worsening, so let's hope it gradually goes away.

As if that weren't enough, on Monday of this week I developed a severe headache with blurry vision and nausea.  We have been at family camp at Camp Caroline (aka "Camp Cadillac"...I'll explain later) since Sunday.  I felt so awful, I had Will drive me back to Calgary last night and take me to Emergency.  With how my scans have gone in the past year, I was utterly convinced they would find that the cancer had spread to my brain.  You can imagine my relief and absolute gratitude when they told me my brain is clear still!  It doesn't explain the headaches, but it does remove the fear.  I'll spend some time looking up my medications to see if any of them have headaches as a side effect.  In the meantime, I've agreed to take regular doses of pain meds until it subsides.

After all this complaining, I'd like to highlight some things I/we are grateful for this summer:
- My body is essentially pain-free from the neck down.
- Alexis loved her week away on her own at Pine Lake Camp
- We have enjoyed good family time at home and at Camp Caroline.  It is quite posh for a Christian camp, with an indoor pool, gym, private rooms, a counsellor dedicated to each family, archery, a "Goliath swing", high ropes course, zipline and horseback riding (all of which Alexis has gone on and loved).
- Will's and my mini-getaways to Banff and Waterton, where we celebrated our 13th anniversary.
- Our new used car (our Corolla was becoming a mechanical pain in the butt, so we traded it in for a 2003 VW Passat station wagon).
- The few times I've felt well enough to bike or hike in our neighbourhood.
- Will's antibiotics are done, his CT scan is booked and the plan is to have a synthetic bone put back in his head in September, and he's been given approval to return to work in October, Lord-willing.
- Stable finances, thanks to the online auction and generosity of family and friends (and strangers!).
- Lots of offers of help.
- A publicly-funded health care system (can you imagine if we lived elsewhere and had to go through both of our health problems?!)

I'm sure there are lots more, but that covers it for now.  Next week, Alexis and I are off to Ontario for an 11-day trip to see family and friends.  We'll be in Sarnia, Thunder Bay, Fort Frances and Winnipeg, so if you live in one of those places, we look forward to seeing you soon.

And for the rest of you, may God bless you and your families as you wind up your summer.

Love, Shawna for the Pyntens

DCA

Last time I wrote, we were soggy with rain.  Now we're into a heat wave...Calgary does not get  many of those, so we'll enjoy it while it lasts.  Air conditioning would be nice though.

I've still been struggling with fatigue.  My oncologist doesn't think the steroid, Decadron, is a good idea because of the many side effects with longer term use.  But he does want me to start a weekly low-dose chemo to combat the cancer cells while helping me tolerate the drugs.  I'm still really reluctant to go further down the chemo road, as the couple times I've agreed to it, I've felt too lousy to enjoy any aspect of life.  I also continue to think "curing with poison" doesn't sound possible, and the oncologist agrees that it would not be aimed at "curing" (short of a miracle). 

So, I'm still going down the road that could possibly lead to a cure...keeping a strong faith in God, strict diet (plant-based foods, mainly) and this DCA drug which I will start this week.  I'll copy and paste some info from the Medicor website, a clinic in Toronto who will be overseeing my care while on DCA.

"DCA (Dichloroacetate) is an old drug that has been studied extensively in humans for treatment of a rare disease called “congenital lactic acidosis.” It has some mild to moderate side effects which are much milder than conventional chemotherapy.  New research shows that DCA can induce the death of the following human cancer cells in the lab: brain, breast, endometrial, lung and prostate.  Our observational data strongly suggests that DCA works in patients with many types of cancer (including but not limited to the above cancers), even those who have failed multiple conventional treatments.  Medicor Cancer Centres was the first cancer clinic in North America to begin prescribing DCA "off label" to cancer patients under the full supervision of a medical team. We have consulted with the relevant regulatory bodies in Canada and are following their guidelines and policies. DCA works by turning on the natural cell suicide system which is suppressed in cancerous cells, thus allowing them to die on their own. It also alters the cancer cell's use of glucose, starving the cell of energy."

There are a few studies on the go, but since it is an old drug, it can not be re-patented.  That means there is no financial gain for pharmaceutical companies to study it thoroughly.  Based on the case studies, it does not seem to be a "miracle cure" but it has helped many people and the side effects of numbness and tingling in hands and feet seem tolerable (and reversible).  I'll start it this week.

I should also update on the high ferritin...I thought that meant I had toxically high iron.  But I have since learned that ferritin is simply the protein that binds iron, and it commonly goes up in response to cancer and inflammation.  It is more of a sign that an actual problem to treat on its own.  So I will have it monitored only for now.  Having said that, detoxification of heavy metals through chelation therapy is on my list of things to look into.  Enough with my health stuff...

Alexis is off at camp this week in Pine Lake, her first time away for so long.  Will is hopefully almost finished with his antibiotics; we'll know more tomorrow.  He and I plan to drive out to Banff tomorrow for a little getaway.  And Penny seems to be enjoying napping her days away in the shade.

If you're off on a summer holiday, we wish you travel mercies.  If you're home or at work, we hope you make the most of each and every day.

God bless,
Shawna for Will and Alexis too.

Quick update

Hello all,

I am writing to you on a soggy Sunday afternoon.  Calgary has had a whole lot of rain, which our flowers appreciate, but we do not.  Will is more than 2 weeks past his surgery and had his stitches removed the other day.  His head is healing nicely he is tolerating the IV antibiotics well enough, although it is a bit of a pain to always tote around the pump, tubing and bag of meds.  He thinks he'll be done with them by mid-July. 

Alexis is almost done school...two and a half days left!  We'll celebrate by going out to a movie that afternoon, then she has over a week of chilling out before heading to Pine Lake Christian Camp for a week with her friends. 

As promised, I have been thinking and praying about which treatment to pursue next.  My recent bone scan and bloodwork results dealt another blow to my optimism...they both show likely worsening of the cancer.  This time, I actually feel it.  Between fatigue, back pain and hair loss, it is hard to stay positive.  I think I have decided on a course of action though.  I will likely accept Decadron (a strong steroid to reduce inflammation), an anti-iron medication (I was recently found to have toxically high levels as a result of inflammation), DCA (a "new" cancer drug that is not a chemotherapy, based out of a clinic in Toronto), and I will go back onto a strict diet since I have been less diligent lately.  Now I just have to see if those all fit together when I see my oncologist this week.  Once I start, I can explain more details about each part.

May the Lord bless and keep you this summer,
Shawna

Home to Recover

Will was discharged home yesterday afternoon, and he's thankful to begin his catch-up on sleep.  He has to tote around a small IV bag and pump which administers antibiotics at regular intervals throughout the day.  A home care nurse will check on the IV a couple times per week.  He thinks he'll need to continue with this until mid-July before getting scanned to start the process for getting a synthetic bone manufactured.  This unfortunately delays his return to work, but we'll come up with some fun summer plans to hopefully make the time fly by. 

That's about it for now.  Unless something else comes up, I won't post another note for a week or two, at which time I hope I'll have decided on a course of treatment for myself.

We wish everyone a wonderful end to the school year, which is just around the corner.

God bless,
Shawna

Monday

Again, not much to report.  Will got his semi-permanent IV (PICC) today and is awaiting a consultation with the Infectious Disease team to make a plan.  He got more rest since yesterday, and is looking forward to coming home, likely tomorrow.

Thanks for your concern, 
Shawna

God Moments

Not much to report today.  Besides a lack of sleep for a few nights now and feeling very tired, Will continues to recover well.  He's still on IV antibiotics for the Staph A infection.  He'll be seen by the PICC team tomorrow (so we're told) for his semi-permanent IV.  Then he can hopefully come home and continue as an out-patient. 

I don't know if I've ever mentioned that I keep a journal of "God Moments".  You know, those times when things just seem to line up and "coincidence" doesn't quite explain it?  Well, I'll tell you about a couple of those recently.  I was actually due to leave for Vienna again yesterday, but I just have not felt peaceful about which plan to proceed with, so I opted not to book any flights yet.  Thank goodness, or I would have had to scramble to cancel everything in light of Will's surgery.  Also, my parents had planned to come sometime in June for a visit, but hadn't nailed down a date until last week on Tuesday.  They said they'd leave Friday and arrive Sunday.  Of course, at that time life was ticking along great.  Little did they or we know that we'd need them here to help out this week.  If God cares enough to sort out these little (ok, medium-sized) details, it sure helps us to continue believing He will sort out the big ones too.

Have a great week,
Shawna

Post-op Day 1 - June 9, 2012

Will's surgery went according to plan last night.  He is recovering quickly...already up and about, dressed, shaved and able to eat (not that the hospital food is very appetizing!).  He is waiting to find out which bacteria caused the infection, then we'll know how long he needs to be on antibiotics.  Apparently it'll be several weeks before his head is measured and a synthetic piece of bone is ordered.  Then it takes several more weeks for that bone to be manufactured.  It may be September before he goes back for surgery to replace that piece of bone.  We're not sure when he'll be discharged from hospital, but likely in the next day or two.

Thanks for your prayers,
Shawna, Will and Alexis

Will's Head- June 8, 2012

10:30pm - Will had his surgery this evening.  He's currently in the Recovery Room and will go back to his unit (Foothill's Unit 111, room 18) in a half hour or so.  I haven't spoken with the surgeon yet to find out how it went, but when I know more tomorrow, I'll post again.

5:00pm - I texted some of you yesterday, but for those who are not in the know yet, here's what's happening with Will and his head...  He had some swelling a couple weeks ago, which he had in the past as well and it always went away with no problems.  This time the swelling went away, but his head was tender near his scar and his skin was getting dry.  Yesterday he picked off some dead skin and pus started draining from the spot (sorry for the detail if you're squeamish).  At his doctor's advice, he went to Emergency and they have decided to admit him.  He's on antibiotics as his bone flap (the piece of skull that was removed last July to relieve pressure, and replaced in September) is presumably infected.  He is awaiting surgery which was supposed to happen this morning, but more urgent cases have bumped his time.  Apparently the surgery is not too risky, and we'll know more about what happens next after they've gone in to see what we're dealing with. 

Will's in good spirits, and all our needs are met at the moment.  We appreciate your prayers and concern and will aim to update this site as often as there is news.  Blessings to everyone!

By the way, I changed the settings on the blog to accept comments from anyone, not just if you're connected to Facebook, etc., so give it a try.  I'll find out soon enough if I made the changes correctly.  At the same time, I also modified the title of this blog and added "Will to Recover" again, since our stories seem to blend and never end!

Shawna (for us 3)

Still Thinking

Here's a little update from my last note...  It's been 3 weeks since my last treatment in Vienna.  Remember I told you about getting two new chemo drugs?  Well, I was spoiled by the lack of side effects with the chemo I was getting for the past 6 months.  No longer...Now I've been having low energy, caught a cold, and my hair is falling out!  This is why I've been reluctant to embrace the approach suggested by my oncologists here in Calgary.  I'm not sure it's worth it.  I have managed to keep putting one foot in front of the other, getting through each day.  Hopefully things improve soon.

On a good note, I haven't had much pain since recovering from those last injuries, and I'm off all pain medications.  This weekend, I'm going to a Christian healing retreat (not exactly sure what to expect, but hoping to learn about God's perspective on illness and healing).  I'm still praying for wisdom about which treatment options to pursue, and amazingly, there are still options.  I have definitely not ruled out returning to Vienna and receiving the dendritic cell vaccine.  My Mom actually came across a study out of Harvard that is looking at those same vaccines.  It looked promising...unfortunately, I don't qualify for the study.  I'll keep you posted.

Will has been really looking forward to returning to work.  However, he has had a set-back.  His scar on his head has become quite sore and he had a fair bit of swelling recently.  An x-ray was taken and he is awaiting his surgeon's review of that x-ray, but it may mean he needs to have surgery again to replace his bone flap with something synthetic.  Again, we'll keep you posted.

We had a great weekend at Pine Lake family camp.  Alexis especially enjoyed being with her friends, catching frogs, eating treats and staying up really late!

I rarely give an update on Penny, our dog, but she had an eventful week too.  After reading about our family in the paper, someone in charge at Petland contacted us and offered Penny some treats from their store.  When I went to pick them up, I needed help getting everything to the car.  Penny was given a new bed, grooming supplies, lots of edible treats, and a year's supply of dog food!  Isn't that another example of generous, loving community spirit?

God bless,
Shawna

Never a Dull Moment

Greetings, family and friends!  Here's a little update after my latest trip to Vienna.  Hmm...where to start.

I was feeling quite well after our little spring break holiday but it was short-lived.  I had a couple minor injuries while walking the dog and pulling up my sock (pretty risky, I know) and ended up with new back pain.  I went earlier than planned for a CT scan and thankfully, no new fractures were found.  My bones overall look the same as in February (still full of sclerotic lesions, but not worse).  The only bone that is worse is my skull, with a bunch of mixed lytic and sclerotic spots.  Thankfully my brain is still clear, which was my main worry.  What was found, however, is that my liver is full of new spots; this is not good.  I've had a few bad nosebleeds which can be related to liver problems.  My other organs are still clear of cancer.  I am due for a bone scan this coming week.

So in light of these findings, my doctor in Austria decided to change my chemo drugs to the other two that were shown to be effective against my particular cancer cells when I was tested last winter.  He also focussed my local hyperthermia sessions directly over my liver.  I don't feel quite as good as usual coming home, likely due to the new chemo drugs, but I'm not too bad.  Pain is not much of an issue, just more tired and weak.

In addition to the changes to my treatment in Vienna, Dr. Kleef also suggested receiving a Dendritic Cell Vaccine.  After reading up about it, here's my version of what that entails:  My blood is drawn and sent to a lab in Germany where they separate out my cancer cells and my dendrite cells.  They merge the two together in a petri dish and re-inject it back into me.  With my dendrite cells coded with my cancer antigens, they inform the T-cells of my immune system exactly which cancer cells need to be destroyed.  This treatment is showing up in tons of studies, but it's too soon to know if it's effective in my kind of breast cancer.  The good news is that it's safe with no side effects.  The bad news is that it's expensive and may need to be repeated.

Along the lines of expense, now would be a good time to tell you all about a successful fundraising event that just took place to help us out.  Parents of some classmates of Alexis organized a massive online auction that raised over $24,000!  We were humbled and so thankful all at the same time.  Check out http://www.communityofcaring.ca/ to see some of the great donations.  And thank you again to everyone involved.

So now that money for the treatment isn`t a barrier, I am still weighing options and praying about what I should choose for future treatments.  I will keep you posted.

My friend, Shawna and I had a wonderful time together during our week in Austria.  We have actually travelled a bit together in the past as well (Italy, Florida, other school trips). Vienna is truly beautiful in the spring!  A couple of our touristy highlights were seeing the Sound of Music at the opera house, and pedalling rental bikes through the park at Prater.  It was such a privilage to catch up with each other after living in different cities for so many years.  Thanks to her husband, Duane and children, Tianna and Daniel for letting me steal her away!

Will and Alexis had a great week as well.  Will is actually quite busy right now as he is part of a study and attends daily sessions for magnetic brain stimulation followed by intense hand rehab.  It is looking promising for him to return to work sometime in the near future as well.

Alexis is full into soccer season right now and looking forward to our time this weekend as a family at Pine Lake Christian Camp, with our friends from church.  Hopefully it will not snow on us as it did this past week, right after I planted some garden veggies.  Gotta love Calgary!

Ok, not such a little note, but hopefully that gets everyone up to speed.   Thanks again for your support and prayers.  We love you!

God bless,
Shawna

Vienna #4

Happy Spring Everyone!

I got back a week ago from my fourth trip to Vienna, for my fifth round of low-dose chemo, hyperthermia, IV's and immunotherapy.  It was a good week of treatment, nothing unusual to report.  As with my scans, my lab tests there show a mixed report with my tumour markers higher again but my immune and inflammatory markers normalizing.  I am still quite thankful for the treatment and care provided at the clinic in Vienna, as it seems to be helping me but doesn't wipe me out with harsh side effects.  I have even been able to ride my bike outside on the nice days here at home.

On this trip, I was accompanied by my friend Leslie Ernsting who used to live in Thunder Bay but moved to Whitby, ON almost a year ago.  We hit it off well in T-Bay and were able to pick right up where we left off when we met up at the Vienna airport.  Leslie had booked tickets for us to see Andrew Lloyd Webber's "Jesus Christ Superstar" which was a highlight of our week.  We weren't sure if the story would veer offensively off of the Biblical account of Jesus' life, but it stayed quite well on track and we enjoyed the show immensely.  We're both suckers for great singing voices!

Along with the musical, we were also able to get into the spirit of Easter by attending a Catholic mass on the evening of Holy Thursday.  It was held in a beautiful little church near our hotel and we even recognized parts of the service despite the whole thing being conducted in German.  Another highlight was going to the upper Belvedere palace, a place I had not yet seen.  That is where Gustav Klimt's "The Kiss" is housed, which happens to be Leslie's favourite painting.  A big thanks to Leslie's husband, Paul and their two kids, Audrey (age 3) and Grant (almost 2), and your families for freeing Leslie up to come with me!

A couple days after I got back home, Will, Alexis and I drove to Edmonton and Vegreville.  We had fun at the West Edmonton Mall's amusement park, water park, mini-golf and restaurants on Bourbon St and Chinatown.  Will went on the big triple-loop roller coaster; I went on what used to be called the "Drop of Doom", and Alexis couldn't get enough of the wave pool and one of the other roller coasters.  A visit with Will's grandparents in Vegreville rounded out our spring break "mini-holiday" nicely. 

I am booked to go to Vienna once more from May 5-12.  My long time friend from home, Shawna will come with me, so I look forward to another week of catching up (really, who else gets to spend a week of uninterrupted time with a friend?).  After that, I plan to re-evaluate the plan based on my next scans and the advice of my doctors, both in Vienna and here in Calgary.  I would appreciate your prayers for wisdom as I go through that process.

God Bless,
Shawna

Vienna trip #3

Hello again.  I meant to post this blog right after I returned from Vienna, but it's been a week already.  My, how time flies! 

This journey was accompanied by my good friend, Terri.  She and I had a lovely week together, and we discovered a couple new cafes that I hadn't yet experienced.  One of them was at the top of a hill, which the two of us and my cane managed to hike up without much difficulty.  It had a beautiful view of Schonbrunn Palace and the rest of the city below.  The other cafe looked like a palace inside, and the best part was the nightly live piano music played on a baby grand by a tuxedo-clad man.  We ate there twice to enjoy the ambiance (and the desserts!).

The clinic was much busier this time compared to my other weeks there.  We met quite a few Americans with sad stories to tell, but everyone managed to find a smile and a kind word.  As with my recent scan reports, my lab results also showed a mixed picture.  My tumour marker level is up again, possibly indicating more cancer activity.  Some other indicators of immune activity, vitamin D and liver function showed improvements.  So, it's hard to know what the take home message should be.  I have also been having pain in my right hip, back of my skull and front rib.  The rest of me feels pretty good.  It's keeping my anxiety under control that has been my bigger challenge.

I had another treatment of low-dose chemotherapy, local and whole-body hyperthermia, and IV supplements.  I continue to pray that these will be enough to get my body going in the right direction.  I will go back again for the first week of April with my friend, Leslie, whom I met in Thunder Bay but she has sinced moved to the Toronto area.  We are looking forward to a good catch-up.

Will and Alexis once again were superstars in holding down the fort while I was gone.  No new pets were added to the household, thankfully!  Life here is status quo which is how we like it.  We're just working out the details for a little road trip during Alexis' spring break when I return in April.

No other news for now.  Take care and God bless,
Shawna

Latest Scans

In the past couple weeks, I had another round of scans which were compared with the ones I had at the end of September.  I was quite sure these ones would show a marked improvement, so I eagerly read over the reports and was surprised that they didn't confirm the almost miraculous recovery I've been experiencing.  Once I got over that, I was able to re-read the reports to find that there is a mix of good and bad news.

I'll start with the bad... the area of bone affected by the cancer is more extensive.  There are many spots on my skull, spine, pelvis, femoral heads (hips), ribs, and humeral heads (shoulders).  Fracture lines are showing up in my pelvis and neck, which I knew about, but also in my ribs, which I didn't know about.  This picture more closely matches how I felt in October through December, but not what I'm feeling now.  In fact, I'm pretty sure I don't still have acutely broken bones as I can literally jump up and down on one foot, and it doesn't hurt at all while I breathe.  I find it strange that when I first started feeling worse in the spring and summer, my scans hadn't changed for the worse at all.  Those negative changes didn't show up until September.  So now that I'm feeling better, the scans still show an aggressive bone picture.  Does anyone know how long it takes for CT and bone scans to pick up on improvements?  Something for me to look up.  Oh, I also have nodules on my thyroid which are being investigated.

And onto the good news...The cancer is showing up as less intense in my sternum, a couple of my ribs, my sacrum and the left side of my pelvis.  All of the bony lesions (except a few spots on my spine) are said to be "sclerotic" which means there is extra bone being laid down, as opposed to "lytic" which refers to weaker bone.  Sclerotic bone can either mean extra cancer cells or a healing process, and without a biopsy it's impossible to tell which is the case, but at least my risk for breaking bones is less now.  The other great news is that my vital organs are stable.  The spots in my lungs have either gotten smaller or stayed the same.  The 3 spots in my liver are nearly gone, but there are 2 new small spots.  All my other organs are normal.

As you can see, it's a mixed picture.  The oncologist here in Calgary recommends going back on a traditional chemotherapy.  I thanked him for the info, but have decided to continue with the monthly trips to Vienna.  Because I feel quite well and strong, I want to carry on with my current treatment.  I'll re-visit the oncologist here in another month, and likely re-scan everything in 3-4 months.  In the meantime, I'm enjoying my morning exercise routine.  I'm able to walk Alexis to and from school with a cane in one hand and Penny's leash in the other.  I don't even need the cane if I know I won't have to negotiate ice and snow, and my limp is pretty much gone.  It's been nice to get back to cooking (and even cleaning!), and I'm finally working on our Disney cruise photo album.

Will and I are going to Canmore today for a late Valentine's lunch date.  Alexis finally had her 9th birthday party last weekend, a few months late.  All in all, we're doing well.  God's taking good care of us through the people He has placed in our lives.

Blessings to you and your families,
Shawna, Will, Alexis, Penny (the dog) and Chloe (our new fish, bought while I was away in Vienna...I wonder what I'll come home to next time?!?)

Trip #2 - Path to Recovery

After a lovely two and a half weeks back home in Calgary, I returned to Vienna with my friend, Nadine for another week of treatment.  I again received low-dose chemotherapy, hyperthermia, immunotherapy, acupuncture, massage and naturopathic infusions.  Based on how well I'm feeling and my lab values, Dr. Kleef believes that I'm on the path to recovery.  I agree.  I am feeling much better than I was 3 months ago - less pain, smoother walking, more energy, stronger bones, stronger faith, more hope.  I am having scans done this week in Calgary and should have the reports in 2 weeks.  It will be interesting to see if they show the improvement I'm experiencing subjectively.

Nadine and I had a great time together, and we were able to take in some touristy sites when I wasn't in the clinic.  We saw the beautiful architecture of the city centre, went to a Mozart/Strauss classical concert, ate schnitzel and sacher torte, and did some shopping.  She even ventured to a couple places I haven't yet seen:  the Lipizzaner stallion stables and the Belvedere palaces.  When I go back at the end of February with my friend, Terri, perhaps we'll check those out too.

Will and Alexis fared very well on their own for a week.  I think they enjoyed taking the pace down compared to when I'm there, as I always seem to find extra "jobs" for them to do.  Can any other Moms relate to that habit?  Will continues to work diligently at eliciting hand and finger movement.  Last week for the first time, he was able to actively extend his left thumb (into a "thumbs up" position).  Now he hopes his other fingers will follow suit.

You know, after going through other hardships in life (mainly health), there has always been a lesson or something good that has come out of it all.  This period of life has been particularly long and challenging for us, and I keep waiting for that lesson but nothing is clear yet.  However, what has been tugging at my heart and mind has something to do with 'gratitude', not just when the trial is over, but throughout it, or maybe even looking at the hardship as a gift in and of itself.  I'm not sure though...it's hard to wrap my mind around that one.  If you have any insights, I'd love to hear them.

And that's the update for this round.  I'll post again once I know my scan results.  As always, thanks for caring and we sure appreciate all the prayers and support.

Love, Shawna
for Will and Alexis too

Home

After being away in Vienna for almost 7 weeks, we arrived home in Calgary on Thursday night.  Our flights were uneventful, which is always good.  We overnighted in London and were able to enjoy breakfast with our friend, Ian and his daughters.  We are slowly working out the jet lag.  My Mom and Dad will start their drive home tomorrow.  Alexis has begun to reconnect with her friends.  Will has resumed driving and is excited to run his favourite routes again.  And our dog, Penny, has moved back in after her vacation at the Deeres (thanks guys!).

In the midst of unpacking, laundry and catching up with friends, my mind has asked the question, "So, was it worth it?".  I left here sore, tired and breaking bones with each twist or turn.  I got worse during the first couple weeks in Vienna which really made me question my sanity.  But finally the treatment effects kicked in and in our final 3 weeks there, I made slow but steady gains in comfort, mobility and energy.  And now I'm thrilled to be able to unpack my own suitcase, cook, do laundry and run errands.  That may sound dreadfully boring, but my goal was and is to do everyday life, and do it with joy!  (Remind me of that "joy" bit when I complain about mundane tasks in 3 months time!)

So, yes, it was worth it.  I'm going back in 2 weeks for another week of treatment, accompanied by my friend, Nadine.  I will post another blog to give an update after that.

Happy New Year!  God bless you.  Thanks for your encouragement and prayers.
Love,
Shawna and family