On September 23, 2017, Shaye and I will be walking alongside friends and family in “Cheryls Run for Aplastic Anemia”.  Personally, we will be raising funds for the Stollery Children’s Hospital, and awareness for the One Match Stem Cell and Marrow Network.  These 2 organizations are so important to us for so many reasons.

if you wish to donate to the Stollery Children’s Hospital through this event, here is the link to our fundraising page

https://www.runningroom.com/dashboard/giving/?raceId=14207&eventId=42322&memberId=BWcHOFI0UzJUMQc0AzU=&lan=1

I didn’t know Cheryl Lynn Boyle, but she sounds like a strong woman surrounded by incredible people.  This run/walk is being organized by her friends and family to raise awareness for her condition and the Stem Cell Donor Registry (One Match), in addition to  raising funds for the Stollery Children’s Hospital which is where Cheryl worked worked in Paediatric Oncology.  Unfortunately, Cheryl lost her battle with Aplastic Anemia and complications from her Bone Marrow Transplant on Feb 1, 2017.

Why is it important to me to increase awareness of One Match donor registry?

As many of you know, I was the recipient of a PBSC Allogenic Stem Cell transplant on June 26, 2015.  What is a stem cell transplant?  Basically, sick cells in a a patient’s body are destroyed (like by destroyed, I mean obliterated with Chemo and radiation) and are replaced with new happy, fresh, functioning, healthy cells.

In an Allogenic transplant, these come from a donor.  I was lucky enough to have found a 10/10 match in my sister Christi.  There is only a 25% chance of a sibling being a match.  The better the match, the better the chance of a successful transplant, and less chance of post-transplant complications.  With 3 siblings ready and willing to be tested in my case (thank-you Cam (tested in Toronto), Christi, and Barb (tested in Sydney, AUS)), I still had only a 25% chance with each one.  I won the lottery.  So many do not, we hear about cases all the time, Shaye and I met people holding on to life by a thread waiting to find a donor.

“More than 80 per cent of Canadian patients receive stem cells from donors in other countries. At any given time, close to 1000 Canadian patients are waiting for a stem cell transplant,” said Canadian Blood Services Chief Medical and Scientific Officer, Dr. Dana Devine

Why?  If a donor is found in another country, we have to send someone to that country to bring them back safely.  Wouldn’t it be easier and less taxing on our system to have more potential donors registered here in our own Country?

 

There are some myths about Stem Cell Donation that I feel are so important to talk about.

1st Myth– Anyone can register to be a donor in Canada.  The window is small.  17-35.  There is a larger need for males.

2nd Myth– All Stem Cell Donation is painful, requires surgery, and cutting into the bone marrow.  No.  There are 2 types of Stem Cell Donation.  The first (and most common) is through Peripheral Blood Stem Cell Donation (PBSC).  As the donor, you are given injections of a drug called G-CSF to increase the number of cells in your blood.  This can cause some flu-like symptoms, headache, and mild to moderate bone ache which normally subsides 24-48hrs after your donation.  There are no long term side effects known for this process.  The second type is through bone marrow donation.  This procedure is done under anesthetic.  A needle is passed through your pelvic bone and draws marrow out.  The process takes about 45-90 minutes.

 

Ok, so that’s my awareness part…now for the fundraising part.  The Stollery Children’s hospital and it’s doctors have played a huge roll in our family’s lives.  You can read more about our daughter Caylie’s story here:

https://followmytransplant.com/2015/05/22/caylies-story/

So, what can YOU do?

There will be a One Match tent at Cheryl’s Run for Aplastic Anemia on September 23.  Come down, get swabbed, and register as a donor.  You can also contact Canadian Blood Services for more information on becoming a blood or stem cell donor by visiting their website at

https://blood.ca/en/stem-cell/onematch-information-new-registrants

If you are interested in donating to the Stollery Children’s Hospital through this event, here is the link again to our fundraising page

https://www.runningroom.com/dashboard/giving/?raceId=14207&eventId=42322&memberId=BWcHOFI0UzJUMQc0AzU=&lan=1

Thank you all for taking the time to read, and continuing to love and support.

-T xo

 

 

 

 

 

It has been WAY too long since my last update, but with the New Year upon us, I felt it was time to get back to some writing.

2016 was a tough one to say the least.  After the Bone Marrow transplant in 2015, I really hoped my health would continuously improve.  I definitely wasn’t expecting to be back in a city away from my family again for the better part of 4 months, but on January 13th all of that changed.  One year ago today, I was re-admitted in Calgary with Graft vs. Host Disease.  It would be almost 4 full months, and some of the lowest lows before I would be able to rejoin my family in Edmonton.  I wrote about the medical experience in my last few blog updates, so you want more information, please feel free to refer back to those.

I sincerely hope Capital Health starts to recognize and gain a better understanding of the toll it takes not only on the patient, but also the families of patients for the increasing number of Allogeneic (Donor) Stem Cell Transplants needed, and considers at the very least adding some of the treatments for Graft vs. Host Disease to Edmonton.  It is one thing to require patients to be away for the procedure itself, but if anything goes wrong afterward, you are basically left with the choice to abandon the treatment you require, or leave again, unless you are lucky enough to live in Calgary of course.  Rumour has it there is a machine available in Edmonton to treat Graft vs. Host Disease (photopheresis) however, it is not being used because Capital Health doesn’t think it is financially feasible  to train a physician and nursing staff to run it.  I met SO MANY people in Calgary who had to leave their lives in Ft.McMurray, Edmonton etc to be treated.  I met others who chose to end treatment because they couldn’t go.  Health care doesn’t cover the cost of 2 homes, transportation back and forth (IF you are healthy enough to travel back and forth.  If you are not, it is a constant drain on friends and family to make the trip), lost wages etc etc.  The list of added/unexpected expenses goes on.

I want to share a little bit about the realities of coming home after being away for such a long time.  Have you ever been away from work for a long period of time, and even though it is likely a stupid, irrational thought, your biggest fear is that people may get used to you not being there, and after a while you are no longer missed?  Now imagine that this long break you are taking is coming after YEARS of stress and challenges, you have no control over, but they are a reality, regardless, and without you there, they don’t exist.  You know you bring so much to the table and are a valued employee, but you just have to pray the people around you remember that.  Any fear of rejection you may have deep rooted in your soul is going to haunt you.  It has never been so challenging in my life to keep my chin up and carry on.  I will say it again.  I am so blessed to be surrounded but the friends and family I have.  Without their support, I know I would not be here today.

Then, you get to go home.  Elated at the chance to get back to “normal”.  But, what is “normal”?  My kids were 12 and 15.  They went from a 1 parent (an over taxed parent burning the candle at both ends) home to a 2 parent home over night.  I am sure anyone who has had a teenager can understand that emotions run high at that age, and changes in authority and control cause a wee bit of chaos.  We have had a bumpy road for sure, but my kids are so resilient, and I can say that 7 months later, my relationship with them is as strong as it has ever been.  It was an enormous adjustment getting here though.  I did not come home “fixed”.  I still had many medical and emotional issues I had to deal with, which meant my family and friends were still going through it with me.

A new year is beginning, and I can say without a doubt that I am starting to feel better over all physically AND emotionally.  My meds are continually being decreased, which helps enormously with side effects.  I am stable enough to see a Dr. every 8 weeks now in Edmonton which means my appointments in Calgary can move to being every 8 weeks as well.  I am booked to get another Blood Transfusion next week which will give me another boost.  The very best news I have to share is that I get my wings back!  I have the ok to travel!  There are some “NO Fly Zones” on my list…Arizona (because of a fungus in the soil), Africa, Asia, 3rd world countries.  But my Doctor even said that with some planning, I could visit my sister in Australia.  THATS HUGE!!!  Now, I need to win the lottery.  Prayers are welcomed 😉

Thank you again to EVERYONE for your continued words of encouragement, love, support, and prayer.  It is all appreciated more than I can ever express.

-Trish xo

It has been a very long time since my last blog post, so much has happened.  I think I said once before that my goal was to help others to gain a better understanding and see inside the Bone Marrow Transplant process.  All of it.  The good AND the bad.  I don’t think I ever realized how hard it would be at times to just sit and write.

There is a dynamic in being treated away from home that is ever changing and hard to describe.  I really hope Shaye and I can be helpful in having the Photopheresis program started in Edmonton when all is said and done because i finally understand why we were told that people quit.  QUIT?  I just could not wrap my brain around how anyone could or would even consider quitting.  When the feeling inside you is that your problem has become too much for those around you to handle.  That’s the key.  I am blessed to be surrounded by so many who try to remind me that isn’t the case.

In the summer, during the transplant process, I was surrounded by people and support. Don’t get me wrong, I still have those who are close and have been here every step of the way with prayer, meals, finances, helping take care of kids, dogs, AND me, it’s just different now.  Those who come to stay as my “caregiver” are here for a shorter period of time and I want to maximize the time I have with them to visit during the good times, and during the bad times…well, let’s just say there have been a few that have made it impossible to write.  I shut down.  Trish-out.

So, that is SOME of the emotional side.  Now the physical end of what has been happening.  My rash (Graft vs. Host Disease of the skin) continued to move and get worse after a VERY short period of improvement.  Here is what it looked like when I was admitted in January

The progression for me has always been from the middle out.  It seems to start first on my chest and move out to my fingers and toes.  It just worsened and worsened until my feet looked like this, and I could no longer stand on them without extreme pain, and walking was impossible.  I used a walker or wheelchair.

And now…man, those are great looking feet 😜

Are you still with me?  It was gross.  I was shedding HUGE amounts of skin EVERYWHERE I went.  I wore the same sweats to treatment every day because anything dark would be covered by skin before I left the apartment.  I would get a full dust pan of skin from my bathroom floor every 2 days.  It couldn’t have started turning a corner any later, it was starting to make me a bit crazy.  They were also trying to sort out the meds and prednisone had been at an all time high so my face is super puffy, and every prednisone withdrawal symptom in the book that I had somehow avoided was coming hard, and in addition, my hemoglobin keeps dropping, so on top of muscles deteriorating, I ended up with zero energy.  As all these things are happening, doctors are racing to figure out

1. If the Photopheresis is even working

2.  If any other organs are being affected

3.  What symptoms are Graft vs Host, what is a side effect of medication and what is a result of immunosupression

About 3 weeks ago, it felt like our world was crashing down.  One of the first times, really, in this process that I even seriously  considered I may not make it through this.  The doctors informed me they were going to meet with us to devise a plan.  The thought was that maybe the Photopheresis was not working as they had hoped, and maybe I would have a better quality of life if I went home.  They explained that it wasn’t the end of the road, but that there were a few drugs left they could try.

My issues with this?

1.  I felt there was something leading to the breakdown of the Photopheresis machine too often for us to have a good idea, and the research I had done all indicated it could take 9-12 weeks to see a difference.  I think we were at about week 8 or 9 but with only 1 solid week because of machine issues.

2.  I felt like going home was a death sentence.  I’ve been there before.  I’m not talking about post transplant, but I went through 6 years of trying one medication after another and in and out of hospital before all this.   Just throwing drugs at me and hoping for the best.

So, I asked for 2 more weeks.  2 solid weeks on the machines, and we could reassess.  They agreed.

In the next week when things were going badly with the machine again, I asked the nurse if there could be pressure problems with my line (I have a tube hanging from my chest with 3 lines attached to it that they use to take blood and give blood and meds etc.)  I had already established with one of the nurses that the pressure was different based on how I was lying or holding my breath or standing.   We even had a “collection” routine whereby I could hold myself in such a manner that I could double the flow speed into the tubes, I just couldn’t maintain that for the Photopheresis machine for an hour and a half!  They booked an appointment for the next morning to have my line looked at. It wasn’t sitting properly, they replaced it immediately.  From that day on, there hasn’t been a single problem.  The machines have worked perfectly.

At the same time that we were sorting out the problems with my line, the BMT doctors decided to get started on these “other” medications they were considering.  One was a drug I’ve tried before, but I had to keep in mind that I am fighting a different disease now and the game and rules are different.  Last time, my liver said NO almost immediately.  This time, my body has gladly accepted it and all is good so far.  The second is a medication still in trial and used for a totally different condition, but the BMT doctors had just been to a conference where they had spoken about a few success stories with patients using it off label for Graft vs Host Disease.  I have spoken with patients in the US who have been going throught a red tape nightmare trying to get it because of their own insurance companies etc.  my doctors had it in my hands 1 week after ordering it direct from the manufacturer.  They work fast here.

It is incredible how quickly my body has been responding.  The rash started going away, swelling has gone down, and we are once again back to reducing the prednisone.  It hasn’t been without minor hiccups.  The Photopheresis is helping get the prednisone down and helping with the GVHD, but may be contributing to the hemoglobin drops so I end up needing blood transfusions or I get too shaky and weak to function.  And this week I caught a cold/cough which let to lots of testing and tried to knock me out, but I am getting through with strong antibiotics and my neti pot.

I took this photo today.  Face is still puffy, but I’m definitely going back in the right direction

So I’m still here, there but by the grace of God go I, moving faster in the right direction thanks to an unbelievable medical team, friends, family, and a whole lot of prayer.

I started this blog in an honest attempt to help people understand this whole Stem Cell Transplant from a patient’s point of view and join the process.  On the good and the bad days.  I have always known, that at times I have had to find my strength in others when I didn’t have it myself, so I feel it benefits me as much as you, for you to join my journey.  I love hearing you find inspiration in it in some way.  I believe I have a responsibility to be as honest and raw as I can.  

My day yesterday started out just as any other.  It’s busy in the morning.  I have to cream up, take all my meds,  have breakfast, talk to the doctor, etc.

Things started to feel like they were falling apart at about 12:35pm. That’s when my lunch showed up. The lunch was totally wrong. I’m on a high dairy/calcium but low fat diet because of how the Photopheresis works. I received someone else’s lunch.  No big deal right?  Who cares, eat what you can, quickly and carry on.

My nurse ran out to find me some lighter soup and carrots anyway, so sweet.

My Photopheresis treatment was booked for 1:00pm.  I was feeling a little crunched for time.  I still needed to be unhooked from my IV machine so I was free and clear for the Photopheresis machine.

At about 12:55, as I was standing getting ready to leave, when one of the nurse coordinators came sweeping in and asked how I felt about changing rooms.  Someone needed this one and they would move me downstairs while I was gone. I’m sure he wasn’t prepared for the puddle I became.

Instantly, I was that little girl.  This little girl.  Some of you may have even known her

This is little girl tries with everything in her to pretend there is nothing wrong, but nobody knows the weight she bears, and ultimately feels all alone.  There is that moment you can’t just keep up the smile.  For just a few moments my little girl was here, and I was all alone.

I tried so hard to keep her down, no matter how hard I tried, I couldn’t stop the elephant tears.  I tried so hard, but nope, they came.

I was embarrassed.  I felt like a selfish crybaby.  I would never imagine keeping a room from anyone who needed it.  I have been on the Bone Marrow Transplant unit long enough to know, when it’s needed, it’s needed.  BUT, it’s not easy to be here alone.  Everything, and all my important people are far away.  I panicked.  I needed a minute to process.  It really wasn’t a big deal, but to me, in that little moment, that little girl with nothing wrong, was all alone.  Trying to smile, although my crooked smile was replaced with tears.

About 10 minutes into my Photopheresis, my big girl took over.  With the assistance of my husband,  sister, friends, mother in law, and technology, I pulled it together.  They know me, and reminded me how close they really are.  Just down the road.  I’m never alone.  I can do this.

Now to count my blessings.  I am blessed to be independent enough to be on my new unit.  I am blessed to have so many following, cheering me on and helping me through this journey.  I lost my housecoat in the process, house coats are hard to come by here.  I worked on getting that one special housecoat all week.  The kind without a belt that fell in the toilet for me to pee on every time I went.  And my dinner was wrong again.   BUT, i found a new housecoat, my breakfast was RIGHT, and I’m back on track.  Crooked little smile on my face 😌😜 on the good and the bad days.

Thanks for the strength you give me.

Peace & Love

Trish xo

Wow has it been another whirlwind week!

I saw the doctor (Dr Storek) in Edmonton on Monday at the Cross Cancer Institute who discussed the next treatment I needed to help with the GVHD (Graft vs. a Host disease).  It was a difficult appointment, and I will honestly say I left with a few tears.  We knew Photopheresis was only available in Calgary, but had no idea how long I would have to be there, or even what the “back and forth” appointments would look like once I am down to only a few treatments per week.  He said this could be indefinite, could be a year, could be 2 years.  Whoa.  What?  We were thinking like 4 months MAX.  And we hadn’t even considered full time long distance living?!

Shaye and I decided Monday night to “Let go and Let God” as we so often do because 1.  We had zero control over what was going to happen.  And 2.  Physically I was deteriorating quickly, was in a tremendous amount of pain, and we could only do the best we could with what was coming at us.

On Tuesday afternoon, we recieved a phone call requesting we be at the Tom Baker Centre in Calgary the following morning to be admitted.

We arrived Wednesday at about 11am and everything happened very quickly.  It was tough getting IV’s in and bloodwork etc done because they had a hard time finding a space on my skin  

 
The first think they did was to bump the Perdnisone to 140mg per day.  The Doctor said they needed to know that the GVHD was Prednisone respondent even at high IV doses to go on with the Photopheresis.  They have also been doing every other test under the sun to see what we are dealing with.  If all goes well, I should have a line inserted into my chest again on Monday or Tuesday next week,, then we are good to go.

I have had to secure accommodation again in Calgary for about a month to start.  I sincerely had angels looking out for me, as a beautiful woman I met at a women’s conference in October has a freshly painted apartment waiting for me to go into next week, close to the hospital.  She remembered meeting back in when we were both looking at some art at the women’s wellness workshop, but the artist was speaking at the time (Thank you Kelly Faladreau for that chance meeting, if you are reading, you have helped my spirit so many times this year without even knowing, and to Debbie Buxton for always pushing me to try new things and meet people that make me a better person).  It all just worked out so beautifully.  

It’s only been 2 days, but my skin is already responding to the steroids.  I am just peeling like crazy now, no more pain and burning.  It’s still itchy, but not like before, and I am getting close and personal wth my nurses who slather me up every morning and night with cream.

  
We use a whole tube of this stuff for every application  

 
Shaye has gone back home to handle the homestead.  So Calgary peeps, come visit if you want 😉 

I have a room with a view this time  

 
I am also going to ask for all the prayers and positive mojo I can muster for my Grandmother in Kelowna right now.  She is going through a tough time, as is my family, and they are in the process of getting her closer to the people who can help her.  It’s hard to feel helpless in that.  

One more, Happy 70th Birthday to my mother in law today!  Wish I were there to celebrate and support with the other things going on.  I miss and love everybody.

Peace & Love

Trish xo

Its been quite the whirlwind of a week.  To make a long story short, bringing out the symptoms of GVHD was like opening Pandora’s box.  Symptoms are raging, angry, and not willing to give up without a more difficult fight than originally imagined.  I received a call today, the stars were aligned and my angels were watching over me, because they were able to arrange a bed for me back in Calgary to have me admitted tomorrow morning.  We can get working on getting the line placed back in my chest and anything else needed to start the Photopheresis ASAP.  I am expected to be there for 9-10 days, then home for a few and back again.

Shaye will be with me to get set up tomorrow, but back quickly to get back to keeping our kidlet’s lives as normal as possible.  And of course all you Edmonton Global News Morning viewers depend on his good looking cheery self every morning too right? 

So here I go again, back to Cagary where I will be back in the hands of the Southern part of this incredible Alberta BMT Medical Team we have,  and will give it all I’ve got to kick this GVHD where it belongs.

Off to bed, big day tomorrow,

Peace & Love,

Trish xo

I have been hiding in my blanket fort again.  So many things going through my head.

Musical things.

🎶 Itchy Itchy Scratchy Scratchy, ooh I got some down my backy… (No idea where that one originated, but I can hear my Grandpa singing it to me and picture myself at the lake, one of my calm, happy places)

🎶 I’m goin’ back to Cali…to Cali…to Cali (L.L. Cool J, early 90’s….back in the day, I remember cruising around in Shaye’s Toyota we called the “Little Brown Jug”.  We used to have to park on a hill so he could push and I would pop the clutch to get it started.  Another happy place). Why am I singing that one?  Because I’m goin back to Cal-GARY.

Yup, going back to Calgary.  Good thing my new year post was about being happy where you are right?  So what happened?  Well, if photos make you wiggly, turn away…

My chest:

   
My arm/wrist/hand:

  

Yup, this is where we are today with this Graft vs. Host Disease.  I know this is going to sound like a very strange method of doing things to some, but with the GVHD coming and going so much, we needed to rule out a prescription allergy. Last week we stopped ALL medications to bring it on full blast, so doctors could get a better biopsy result.  Well, I aim to please.  I complied.  Last week I dealt with Prednisone withdrawal, it was terrible, but I have never been so happy to hear “start back at 70mg”.  That was Thursday.  The itch and rash are worsening, but it’s ok because tomorrow I am seeing Dr Storek from Calgary at the Cross here in Edmonton to hopefully set up a new treatment regimen in Calgary.  If he says leave today, I will go!!!  I think I may pack a bag and take it with me to the appointment!  
The thought of going back holds  many scary thoughts.  But I can do it.  It’s obviously part of this process, so here in my blanket fort I am preparing myself.  Preparing my kids.  Not getting weaker, getting stronger.  Like Southpaw before the big fight.  If I kick the poop out of this then what’s left?  Just me.  Yup, that’s the goal here.

The treatment is called Photopheresis.  I will get a line put in again for the next while, and they will take blood out, target T-Cells, and put it back.  Basically calm things down.  Right now, Christi’s stem cells have grafted, all is good, but now her cells are fighting harder than my body can handle.  I tried telling her to tell them to calm down, that didn’t work.  I also told her that we are grown ups now, we don’t need to fight like this anymore.  She assured me of her sisterly love, but that didn’t work either, so here I am going back to Calgary.

Bring it. We’ve got this.

Peace and Love

Trish xo