(PLEASE NOTE: this is posted out of order and is the celebration note I sent to friends and family in November 2012)

Dear Family and Friends,

It’s true! Yesterday (November 18, 2012) marked the three year anniversary of my bone marrow transplant. Thank you to everyone who has already celebrated with “likes” and comments on Facebook.

The three year mark is quite a significant milestone as far as bmt’s go. And like any significant milestone, I have had time to reflect on what has happened in the last few years in order to put me where I am today. I must admit to you that my own expectations for reaching this milestone are very different from where I am. I had thought that once I hit the three year mark that it would be clear sailing with just a few doctors visits scattered throughout the year. As you know, this has not been the case. I am still battling with graft-vs-host disease and am regularly down at the hospital 4 days/month for appointments, tests and photopheresis treatments.

That said, I do CELBRATE! I AM celebrating! My heart is FULL and OVERFLOWING with thanksgiving to God. This life saving procedure has been life changing for me. And you, my family and friends have all been an important part of this transformation.

I could go on and on (I really could…) but I want to share just one story with you that has radically changed the way I understand my own cancer/bmt story and the roles that you have all played. This year, in a way like never before, I have had opportunity to pray for some of you who are in the very middle of your own stories. I have “yippee-yahoo” celebrated when good news has been communicated and at other times I have had the breath knocked right out of me at what was happening, completely heart-wrecked. My prayer this summer and fall has been “grant that I may not so much seek to be consoled, as to console.” -St. Francis Assisi. And God has been answering that prayer in a variety of ways. Praying and dialoguing along side others in this way has given me a keen awareness of the roles that you have played in my own story. Some of you have been walking along with us since my transplant, for some, since my diagnosis and some of you, my entire life. I am humbled that you would journey alongside me, Jeff and Nathan for so long.

I was encouraged yesterday by the following reading so I will leave a portion of it with you. It comes from Streams in the Desert, November 18 reading.

“I may find myself confined to narrow areas of service, or isolated from others through sickness or by taking an unpopular stance, when I had hoped for much wider opportunities. Yet the Lord knows what is best for me, and my surroundings are determined by Him. Wherever He places me, He does so to strengthen my faith and power and to draw me into closer communion with Himself. And even if confined to a dungeon, my soul will prosper… So, let come what will come, His will is welcome.”

As I approached the three year milestone, I had certainly hoped for, even expected much wider opportunities. But I believe with all of who I am that God knows best and that I am here in this place for a purpose, to strengthen my faith and to be drawn closer to Him.

With joy that triumphs,
Heather

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(note: part one was never added… I’ll fix that later…)

Dear Family and Friends,

It’s been a while since I last sent a note so I am offering this update in two forms. At the top you will find a Coles Notes version of the last few months. Below that you will find the lengthier “Heather’s Notes” to which you have all become accustomed. Enjoy!

I finished off my last letter to you with these words from the November 18 devotional in Streams in the Desert:

“I may find myself confined to narrow areas of service, or isolated from others through sickness or by taking an unpopular stance, when I had hoped for much wider opportunities. Yet the Lord knows what is best for me, and my surroundings are determined by Him. Wherever He places me, He does so to strengthen my faith and power and to draw me into closer communion with Himself. And even if confined to a dungeon, my soul will prosper… So, let come what will come, His will is welcome.”

***As I approached the three year milestone, I had certainly hoped for, even expected much wider opportunities. But I believe with all of who I am that God knows best and that I am here in this place for a purpose, to strengthen my faith and to be drawn closer to Him. Today I find myself in the middle of those “hoped for wider opportunities” and I share these things with you, my family and friends from a heart that is overflowing with great JOY and THANKSGIVING.

Coles Notes:

Photopheresis: At the end of December it was decided that I would stop the photopheresis treatment which was treating the gvhd of my skin. This has been a decision that has reduced my hospital visits from 4-5 full days of treatments, tests and appointments each month to just one full day of appointments.

My Lungs: At my last appointment at the end of January I had a CT scan and a Lung Function Test. I was nervous that there would be no good results based on how I was feeling at the time. Both tests showed great improvement. While the CT scan still shows “spots” the doctor’s are not worried.

Hand Cramps: One of my current health concerns is that most days my hands cramp up, almost as though a strong magnet pulls my pinky and my thumb together. It is painful, right up to my elbows, and I am still trying to figure out ways for relief. There are many suggestions from doctors, patients and Google as to what is the culprit (the transplant itself, prednisone, imbalance of vitamins, food triggers… the list goes on). While this isn’t a major concern for the doctors, it is something that bothers me. Even some of this letter has been typed out with just one finger. This cramping often comes in the afternoon (around 12:30) and can last for just a few minutes or for a few hours.

Predinisone: When I stopped the photopheresis treatment, it became necessary to start on Prednisone again to combat some of the gvhd that is going on in my body. While this is a fantastic medication, it also has side effects that I am still wrestling with. My prayer is that I would be able to come off this medication quickly (and safely) and that my body would function properly without this medication.

Knitting/World Vision: I will elaborate in the Heather’s Notes below… During my frustration with my health throughout the fall God laid it on my heart to help fund a Mobile Medical Clinic through the World Vision Gift Catalogue, to Make a Difference, One Stitch at a Time. In order to fund this project I began to knit hats and mittens and sew some Christmas ornaments with the entire purchase price going towards these health initiatives. This has filled me with an ongoing sense of greater purpose, those wider opportunities I mentioned before.

Speaking: I will be speaking at the World Vision staff chapel on Wednesday, February 13 and would value your prayers as I share my cancer/bmt story.

Other News:I am volunteering in Nathan’s grade 1 class one day/week and I have started to learn French in a continuing education class this winter.

OH! There is so much more I could tell you but for now I’ll sign off for some of you as you finish the Coles Notes.

May you, my dear Family and Friends, know today, that wherever you are and whatever you are doing, that you were created ON PURPOSE and FOR A PURPOSE.

With Joy that TRIUMPHS,

Heather

Heather’s Notes:

This following story is mostly about how God has planted a seed in me to make a difference by helping to fund medical initiatives through World Vision through my knitting projects. It is not to shine a light on me, but to give thanks and glory to God, for He alone has opened up my eyes to see the wide opportunities that are right in front of me.

This summer and fall, as I have already written, was filled with doctor’s appointments and treatments. During that time, there was a growing tension in my heart. On one side I had a deep understanding that I was receiving world-class treatment, in world-class facilities, treated by world-class doctors. I knew that if I had been born almost anywhere else in the world that my healthcare team and treatment would look radically different. More than that, if I had been born in a different part of Canada, even Ontario, the easy access to this top-notch care would not be the same. I was (and continue to be) overwhelmed and thankful for my healthcare team and treatment.

But here’s the thing: While I knew deeply that all this was true, I couldn’t understand this growing frustration inside of me each time I needed to go downtown for treatment or appointments.

One day while waiting to cross from PMH to TGH, with Sick Kids (another world class facility) and Mount Sinai just down the street I wrestled with own thoughts, “there are people in this world, in this country, in this city, who would do anything for the kind of healthcare access that I have available at my doorstep, at the dial of a button. People are sick, literally dying because they don’t have access to doctor’s, nurses, medicine which I take for granted. Even knowing all this, I was unthankful. More than, I was frustrated by my own reaction to these opportunities. In conversations with friends I was told that it was right to feel this way, that it was okay to be frustrated with my current hospital schedule but I just couldn’t believe that was true. Believing that lie was life draining for me.

And then, right there on the side of University Avenue, my heart broke and a seed was planted in the fertile soil of my heart. A seed of potential, a seed of hope, a seed to change the world.

For a while I had been thinking about partnering with World Vision through their Gift Catalogue in order to raise money to help fund a Mobile Medical Clinic. A Mobile Medical Clinic gift can be purchased at the price of $400, an amount that was much more than I had the potential to earn, more than I could save, more than I could imagine. I began to pray about what I could do to make that different. How could I give any money to this project if my health circumstances dictate that I can’t work and our family budget didn’t have room to fund a project at this cost?

And as I prayed, God spoke healing to my broken heart: “you can’t earn a living, but you can still make a difference, one stitch at a time.” And so it began. I decided to raise money for a World Vision Mobile Clinic through the gift catalogue. I wasn’t sure if it was even possible, but I decided that however long it would take, I would just keep knitting and making Christmas ornaments and sell them to family and friends and in return give the entire purchase price to this project.

And so, I started out with just a $4.00 investment along with the wool and other craft supplies that I have collected throughout the years. And then, the most amazing things started to happen. As I shared my purpose and passion with others, as I talked about the dream of helping to fund a Mobile Clinic, as I cast a vision to others, the vision became contagious. Suddenly family, friends and strangers started to join in, buying the things that I had made, offering to help knit, or sell, or sew. Others gave money to help fund some of material costs or donated wool that they were no longer using so that together, we could begin to provide life saving medical opportunities for people who would otherwise never have opportunity to receive medical help. It has been and continues to be important to me, to sell my items at prices compared to what you would find in the store so that anyone can join in. At the same time, all of my knitting items are listed at suggested donation prices so that there are no financial barriers for someone who would like to partner in this vision.

I’m here today to tell you that this dream has come true and it is STILL coming true!

You see over the years, I have learned that God’s faithful provision is beyond what I can ever imagine. Only God can take four bucks, some wool, knitting needles, a willing heart and a dream and turn that into LIFE SAVING medical opportunities for people who otherwise would be without. I am humbled and overwhelmed that God could use me, this 38 year old cancer/bmt survivor to change the world, for His glory.

This has been a wild ride, to be sure, but the biggest change has been in me. It is true, that since just before Christmas that my health circumstances have changed and I am only down at the hospital for one full day of appointments each month, but my heart has changed. I have been reminded that I was created ON PURPOSE and FOR A PURPOSE and I have begun to live that more fully. My goal, my dream is to continue to knit or create items to sell in order to fund medical initiatives through World Vision for as long as I have two hands to knit with. I want to tell my story, giving God all the glory and immobilize you to do the same with all the gifts, resources and talents that God has uniquely outfitted you with.

Ephesians 3:20 Now to him who is able to do immeasurable more that all we ask or imagine, according to his power that is at work in us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen!

With Triumphant Joy,

Heather

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 2,400 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 4 years to get that many views.

Click here to see the complete report.

Dear Family and Friends,

Thank you so much for your prayers for Jeff, Nathan and I over the weekend and yesterday as we went down to PMH and TGH for my appointments with the doctors.

We had a long talk with Dr. Kuruvilla about the treatment option of photopheresis and he confirmed what we had already heard about the treatment and also agreed that this would be a good way to proceed in fighting the skin graft vs host disease (gvhd). We also talked about the MRI that I had a few weeks ago and while nothing was found in the scan, it has been suggested that I go for another MRI with contrast dye in order to just “close this chapter” with certainty. I am waiting for a new appointment date for this procedure.

Afterwards we went to meet with Dr. Barth in the Photopheresis Unit at TGH. Together we walked through my cancer history, the time since the transplant and a physical examination to determine whether or not I would be a candidate for this treatment. Dr. Barth also gave us thorough information about how photopheresis works and why it is a benefit to chronic skin gvhd patients.

As it turns out, I am a good candidate for this treatment and I am scheduled to begin the first week of July. One of the great things that we learned is that this treatment can be done without the use of a central IV line. My veins were examined and the nurse assured me that for now, the veins in my arms will be sufficient for this procedure. What excitement grew as I realized that I would not need to have a central line put in.

My treatment schedule is as follows:

July 5/6 8:30-11

July 19/20 8:30-11

Aug 2/3 8:30-11

I will have two treatments back to back, every two weeks for a long time. The results of this treatment will take a few months to see but Jeff and I are confident as we move forward that we are doing the right thing.

Yesterday I was reflecting on Psalm 91:4 which says, His faithful promises are your armour and protection. The idea that God’s promises are my armour and protection provided me with much strength and comfort. I felt protected, guarded and safe by truth of these words. But I especially love the phrase “faithful promises”.

I have spoken about this to some of you already, but it bears repeating. The phrase “faithful promises” is kind of redundant. I mean a promise itself is a loyal agreement. In fact, it’s defined as a declaration that something will be done or an assurance of an expectation. And the word faithful means the same, loyal, trusted, believed and true. To put these words side by side, “faithful promises” is like a double whammy. To think that these promises are our armour and protection… WOW! But it gets even better. The verse says “HIS faithful promises”… Think about it for a second (or even better, all day). God himself, his very character is faithfulness! Psalm 100:5 says “For the LORD is good. His unfailing love continues forever, and his faithfulness continues to each generation.

As I move forward in my treatments, I want to begin collecting God’s faithful promises, taking time to reflect on them and dressing in them as my armour and protection. Would you consider sending me your favourite verses of God’s promises?

With Joyful Thanksgiving,

Heather

My Dear Family and Friends,

I’m writing to you tonight to ask for your prayers for Jeff, Nathan and I as we face a new fight in the post-bmt battle. In simple terms, graft-vs-host disease (gvhd) is the fight of my donor’s cells (the graft) fighing off my old cells (the host). Having gvhd is a continued sign that the transplant is working but it can manifest itself in a variety of ways that need treatment.

On Monday, June 4th, we will be meeting with Dr. Kuruvella to discuss the results of an MRI taken last week on my brain. Over the last few months I have had difficulty with retrieving words in conversation and an increase in memory loss. This may just be a result of years worth cancer treatments and the bmt but the MRI will give us some results.

Also, later that morning, we will meet with Dr. Barth at TGH. As well as the “brain fog” I have had difficulties with chronic gvhd of the skin. This has shown itself in changes in my skin pigmentation, decreased mobility and a “thickening of the skin”. After poor results with a treatment of prednisone, a new treatment has been suggested called photo apheresis (pronounced af-RE-sis).

From our conversations with my doctors, this is an excellent, promising treatment for chronic skin gvhd. In VERY simple terms, photo apheresis is an IV procedure where my blood is taken out, exposed to UV rays and then returned to my body.

While this is the best treatment for me, it’s not without it’s drawbacks. Photo apheresis takes a lot of time. To begin with, the treatments would be 2-3 times a week, every other week. The duration of the photo apheresis depends on each patient but could be anywhere from 6 months to 2 years. I would also require a central IV line (like the hickman that I had throughout the bmt) which carries the risk of infection.

Would you pray for Jeff and I as we meet with the doctors on Monday that we would have wisdom about how we should proceed?

What can I say to encourage you here? Even through the initial tears, overwhelmed by the possibility of this new treatment I told Jeff that my tears were not a result of being angry at God or questioning His goodness to me.

I have been reflecting on these verses in the last few days.

Psalm 73: 24-26, 28

You guide me with your counsel, leading me to a glorious destiny. Whom have I in heaven but you? I desire you more than anything on earth. My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever. But for me, how good it is to be near God! I have made the Sovereign LORD my shelter, and I will tell everyone about the wonderful things you do.

And also Isaiah 40 (the whole thing but I’ll write out these verse for you…)

Have you never heard? Have you never understood? The LORD is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, young men will fall in exhaustion. But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.

With continued joy,

Heather

For a long time I have talked (to just about anyone who would listen) about the many comparisons between the bone marrow transplant that I went through just over two years ago and my faith in Jesus.  And while I have done a lot of talking about the similarities, I haven’t yet found the words to write them here for you to see.  This post is an announcement of the beginning of these reflections, the deep spiritual impact that the physical bone marrow transplant has had on my spiritual life, reflections that have led, and are leading me to a greater understanding of my life of faith, my trust in Jesus and my obedience to all that He asks of me.

So many of you reading these words have walked alongside of me for great lengths of this journey, some of you are just joining me now. I invite you, each of you, to come walk alongside me for just a little while longer.  There are some rich treasures that I want to share with you.  These treasures have helped me as I have walked along a difficult road.  My deep prayer is that these words, thoughts and reflections would bring you understanding as you travel along on your road, facing whatever obstacles that stand in your way; that my writings may help you in your search for the God who created you, who knit your unborn body together, who LOVES you and has a plan for your life.

Will you join me? It’s gonna be a wild ride!

With Triumphant Joy,

Heather

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Just three weeks shy of my 5th birthday I was the flower girl in my Auntie Edith’s wedding.  I wore a pretty blue dress and black patent leather shoes.  I began planning my own fairy tale wedding right away.  I had a lot of the details figured out for a long time: a Christmas wedding, red bridesmaids dresses, my bridal party, the musicians, the scripture readers, flowers.  In fact, in all my planning, the only thing missing was the groom.  And if you had known of my plans from an early age and were in attendance that wintery December day, you probably didn’t notice any surprises.

Often when I talk with newly engaged couples I offer them this advice:  In your planning, be careful to plan for your marriage, not just your wedding.  The wedding lasts only a few hours.  Your marriage lasts a lifetime.

When Jeff and I were planning our wedding we decided to use traditional wedding vows.  This was a piece of advice that had been passed along by my sister Pam.  It was suggested that by using “common” or traditional vows that in the future, when you are attending a wedding and these vows are repeated, that they will remind you of the vows that you made to your husband/wife on your wedding day.  As I have sat through the weddings of many family and friends I listen carefully to the couple as they repeat their vows to each other. Each time I am reminded of the vows that I made to Jeff on our wedding day.  Being reminded of these vows gives me the opportunity to reflect on how well I am doing at keeping my end of the bargain.

Depending on my season of life, listening to a couple recite their vows hits me in different ways.  The most vivid memory that I have is during Peter and Caitlin’s wedding.  And believe me, I was completely blindsided by my emotion.  As Peter and Caitlin vowed “for better, for worse, for richer, for poorer, in sickness and in health, for as long as we both shall live” it happened.  Emotion came over me.  Not those beautiful tears that can often be seen at weddings and that can be quietly wiped away.  Nope.  I started to cry big, heaving tears.  You see, it was just a few months earlier that Mom had died.  I had just watched my Mom and Dad live out those very vows, for better, for worse, for richer, for poorer, in sickness and in health for as long as we both shall live.  And it struck me.  Hard.  Those vows are big.  I mean, really BIG.  (To be honest, even writing out the memory of this has filled my eyes with tears.)

Every year on our anniversary I write out my wedding vows to Jeff in his anniversary card.  Here’s what they say.

***

I take you Jeff to be my wedded husband

To have and to hold from this day forward

For better, for worse

For richer, for poorer

In sickness and in health

To love and to cherish and obey, ’til death us do part

I dedicate our marriage and our home to the Lordship of Jesus Christ

I pledge to you my undying love and constant faithfulness

I ask God’s help in keeping this solemn vow

***

I think that our vows are pretty standard when it comes to wedding vows, but let me tell you this… there have been times when I have looked at these words and thought “really?  I vowed all that?”  No wonder I asked for God’s help in keeping this vow.

When was the last time that you thought about your wedding vows?  Did you write your own or use a traditional script?  Do you remember them at all?  Could you find them if you tried?

More than that, how are you doing in keeping them?

Last week, Jeff and I celebrated 10 years of marriage and truthfully, I think we’ve got everything covered. Better/worse, richer/poorer, sickness/health.  But if I’ve learned anything over the last 10 years it’s this:  speaking or writing out these words every so often is pretty easy.  It’s the living it out, everyday, that is the challenge.  I continue each day to ask God’s help in keeping this solemn vow right to the very end “’til death  us do part”.

With Triumphant Joy,

Heather