Family and Friends,

You’re in for a treat today.  In my last post I spoke a bit about the FANTASTIC Two Years and Counting Celebration a few weeks ago.  Believe me when I tell you that I am still reliving that night in my memory.  While I enjoyed the entire evening, the star of the show was Daddy and message to the group of us there.  I have asked him to write out his message for you all to enjoy.

So, let me introduce you to one of my favourite people in the entire world, my Daddy, Harold Norman.

***

Has anyone here ever had a ride on a helicopter? On one business trip in 1972, I had to get to Newark, New Jersey from New York City. It was suggested that I take the commuter helicopter from Idlewild to La Guardia Airport. I was taken by golf cart to the helicopter with several other passengers. It was quite large with twin rotors and seating for about 20 passengers. We lifted off and in a few minutes flew past the Statue of Liberty and landed on a pier at the foot of Wall Street. The next stop was on the top of a skyscraper, and then to Newark Airport. That same evening, I made the return trip to New York. The lights of New York City by a helicopter flying low and slowly is a sight I will never forget.

Does anyone know who we have to thank for the “modern” helicopter. I’ll give you a clue. Helicopters are nicknamed “Hewies” because of this man. His name is Howard Hughes. Before Howard Hughes started to play around with helicopters they were strictly novelties. They were very unreliable and of no commercial value. He was an engineering genius and soon solved many of their deficiencies. Howard Hughes was successful in a number of ventures besides aviation. He made billions of dollars in war contracts, he started TWA (Trans World Airlines), owned several hotels and even owned a movie studio. Perhaps his most famous endeavour was the “Spruce Goose”, an airplane built from plywood which resides in a museum (hangar) today in Seattle, Washington. He was on the “A” list of every society function, often arriving with the latest movie star from his movie studio draped on his arm. Leonardo de Caprio played Howard Hughes in his biographical movie, “The Aviator “ – an excellent movie.

Howard Hughes seemingly “had it all” and lived life “to the max”. However, a fear of germs, make that a paranoia, drove him to seclusion, and finally he became a recluse, living in a sterile environment with gowned and gloved nurses watching over both the dials and him. All these precautions were in vain and what is particularly sad and ironic is that there was nothing wrong with him and his immune system. He was a perfectly healthy man!

Perhaps if he had stayed in one of his hotel rooms and looked into the top drawer of the night table, he would have found a Gideon Bible. If he had opened that Bible to Matthew 6:27, he would have read, “Who of you by worrying can add a single hour to his life?” If he had turned to Psalm 139:16, he would have read, “All the days ordained for me were written in Your Book before one of them came to be.”

Howard Hughes died in 1976 an unhappy, pathetic, miserable man. He left no heir and no will. It took a decade to settle his estate with lawyers and the government taking most of it.

In contrast, Heather was diagnosed with CLL 13 years ago. Instead of becoming a recluse to avoid contact with germs that could potentially kill, she decided to delay chemotherapy, against her doctors’ advice, so she could finish her Early Childhood Education (ECE) diploma at Sheridan College. She worked at several day care centres and nursery schools surrounded by children she loved. She married Jeff, a very special man, and blessed me with a wonderful grandson, Nathan. Interestingly, while she was pregnant, she was in the best health she has ever been, leading to Doctors writing her story in a medical journal. She also travelled frequently, usually on short term Missions Work.

Her life has been difficult at times with blood transfusions, chemo, infections, fatigue, hair loss, and many stays in hospital. On one of these hospital stays, I went to visit her. The staff gave me a gown, cap, mask, booties, and gloves to wear. This precaution did nothing to encourage me! I walked into her room and found her hooked up to more monitors and tubes than Christmas trees have tinsel. She tried to smile to ease my fears, but I could tell that she was not well at all. She told me in a very faint, strained voice to come closer and give her a hug and a kiss. I asked her if that was a wise thing to do in case I might pass on some germs. Without any hesitation, she told me that if she couldn’t hug and kiss the most important people in her life, that she might as well die right then.

On other visits to see her, I found her room decorated with all the promises of God and Bible verses from A to Z.

I believe that Heather personifies the Abundant Life that the Apostle Paul teaches. If there was one thing I would like us all to take away with us tonight, it s that we all need to fulfill our purpose in life by worshipping God wholeheartedly and serving Him and others with the time God gives us. As a young husband and father, I decided that I was going to take leadership in giving my family direction and training. I believe that I have been somewhat successful in this area, although there have been times that I feel they turned out well, not because of me, but in spite of me. In retrospect, I realize that I have learned some pretty amazing things from my family as well. I learned from my late wife Sharon how to die and I learned from Heather how to live. The life I’m talking about is not taking up time and space on this earth, but the Abundant Life that only God can provide when we submit to a heart transplant. If anyone has any questions about what I have shared with you, I would be glad to spend time with you before you go home or I m sure that Heather and Jeff would love to meet with you.

***

Daddy, if you and Mom hadn’t taught me about jesus and taught me to build the foundation of my life on the truths of God’s word and who He is then the story of the last 13 years would look very different.  The story would have been marked with sadness, fear, bitterness and anger.  Instead, because you taught me to love Jesus and to believe in His promises my story is filled with joy and thanksgiving, mercy and compassion.  Thank you for the example you set for me then and continue to set for me today.

***

With ongoing joy,

Heather

 

 

 

 

 

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Dear Family and Friends,

What a great celebration on Saturday night.  There were so many people who helped with the set up, desserts, music, decorations and tear down of the night.  Thank you.  As I stood at the door and greeted everyone, I was OVERWHELMED!  I am still re-living the evening and I am still overwhelmed at the love poured out for me and my family.  For those who were unable to attend, I’ll give a brief overview of the evening.

We were entertained and amazed by the illusionist talent of Bill Abbott.  His talent and humour was a highlight for me and was a great way to start the evening.  (At home Nathan is now practicing his card tricks and is remembering phrases like “easy come, easy go”…)

We also showed this video: Conquer Cancer. This a powerful reminder of the research that has been done and the successes that have been found in the fight against cancer.

Jeff noted some Firsts from PMH including the first stem cell transplant in 1971.  One of my Doctors, Dr. Messner was a part of that groundbreaking discovery and played a vital role in my own bone marrow transplant.

Here is another video showing some of the groundbreaking work that Princess Margaret is a part of in the fight against cancer:  In Our Lifetime

Jeff also asked our guests to consider making a donation to the Princess Margaret Hospital Foundation through their Doves of Hope program.

My Daddy was the next up in the program.  Rather than summarize what he said that night I’m going to ask him to share here for you all.

After that, I got up to say a few words.  It was quite overwhelming to look out over the crowd of people and see familiar faces from all areas of my life, family, new friends, life long friends, neighbours… Just before I was in hospital a friend had written out a word picture for me.  She saw me in the centre or a ring of people, held in the arms of Jesus.  Then Jeff and Nathan, followed by my parents and family. Surrounding them were friends and complete strangers who were praying for me.  To complete the circle were the Holy Angels, protecting me.  As I looked out over the crowd that night, it was that word picture, in living colour.

I’ve said it before and I’ll say it again… thank you.  Thank you to each of you who attended our celebration.  Thank you to each of you who were unable to attend but celebrated with us from where you were.

Love Heather

Hi Everyone,

Thank you, everyone for your prayers for me over the past few days as I went through the bronchoscopy procedure and then waited for the results.

We first met this morning with the lung team at TGH.  The doctor who had held my hand while they had put the 2nd IV in came into the room along with a visiting doctor.  She asked me how I was doing since the procedure and said that when they were finished the other day I sat straight up and announced that I had been awake throughout the whole thing.  I hadn’t remembered that but I told her that I had felt much more aware during the procedure than the times before and that I remembered waving my arms to alert them that I was uncomfortable.  I thought it funny that she confirmed that I had indeed tried to communicate by using my arms and that they took notice of it and then gave me more sedation in order to calm me down.

After the chit chat, the doctor (whose name I have forgotten but was very lovely and kind towards me and spoke with a british accent) told me about what had happened throughout the procedure.  When they looked with the ultrasound they were able to see that the spot (I call it my “baffling spot”) seemed to be surrounded with blood vessels which made taking a sample very difficult.  They did take samples and sent them off to the lab for results.  When the lab looked at the results they found that there was not enough to test.  It was confirmed that this baffling spot was not a tumour.

The doctor who had done the procedure (a different doctor who was actually the inventor of this scan)  had a few conversations with Dr. Kurvella, my oncologist in order to determine what the next steps would be.  As a result of their discussions, a review of the different ways we have tried to sample, scan and treat this baffling spot and noting that I am not experiencing any symptoms of infection at the moment it was decided not to do any further tests.  That said I will still be having CT scans in order to see what this baffling spot is doing and if I do get an infection we would again weigh the options.

So what do I make of all this?  Good question.

To be honest.  I’m glad it’s over. I’m glad that the doctors will leave this baffling spot alone for the next little while until it decides to act up again.  I’m thrilled that my next appointment with Dr. Kurvella is in 4 weeks (FOUR WEEKS!) I can’t even remember the last time when my appointments were spaced that far apart.  I’m not sure what I will do with all that time.  One thing that I know for sure is that I am at deep peace with this decision.  In fact, even before hearing from the doctors this morning I had decided in my heart that unless there was a reason to continue to search for an answer that the baffling spot would remain a mystery.  Perhaps for now, perhaps forever.  On facebook this morning I posted “it is well with my soul”. And it is.

I was reminded this morning that God has a plan and purpose for my life.  That HE is not baffled by this baffling spot.

I have reflecting on the words from one of Starfield’s songs titled Something to Say

And faith might mean there won’t be answers

And hope might mean enduring through the night

Help me not forget in darkness

The things that I believed in light

The song itself is the prayer of someone going through a crisis of faith.  This is not me. I am not questioning God or wondering what He was thinking by healing my body of all kinds of infections including cancer but forgot about this one little baffling spot.  God is good.  He loves me.  He smiles down on me with delight.

I know I’m not the only one with a baffling spot in my life.  Can you trust God, in faith, even if there are no answers to be found to the baffling spot in your life?

It is well with my soul,

Heather

 

 

You can listen to Something to Say here.  http://www.youtube.com/watch?v=KLPMehpT8Ik

Anyone who knows me well knows that I love to knit.  I’ve been knitting since I was a teenager having learned at the hand of my Grandma Norman, inspired by my cousins Stephanie and Beth and mentored along by a woman at church.

One of the things that I love about knitting is that it all starts out the same: with a ball of yarn and a set of needles. From here, anything is possible.  Mittens. Scarves. Hats. Toys. Sweaters. Socks. The possibilities are endless.

To begin I choose my pattern, select my wool and needles and begin to cast on stitches.  And then, one by one, stitch by stitch, row on row a piece of knitted fabric starts to form. Something from nothing. Created by my own hands. Slowly, thoughtfully, with purpose.

The Bible, in Psalm 139:13 says For you created my inmost being; you knit me together in my mother’s womb.

I’ve been thinking about this verse a lot over the last few weeks.  That God knit me together, knit you together. And just as I carefully choose each pattern and wool, God carefully put thought into who you and I are, who we would become. He chose the colour of my eyes, the freckles on my face, the number of hairs on my head. No one is just like me. No one is just like you.  We are each one of a kind.  A carefully crafted, hand knit human being. Created in the image of God himself.

Sometimes when I knit I notice a mistake that I’ve made.  If I catch it soon enough I can go back, stitch by stitch and make the correction. Knitters sometimes call this “tinK-ing” since we’re Knitting backwards or unKnitting. This is an easy way to fix a mistake and takes just a few minutes.

Other times I notice a mistake from many rows below that has gone unnoticed. This is trickier to fix and requires a bit more patience and skill.  I isolate the stitch and tear back that one stitch many rows below to the mistake, correct the stitch and slowly, deliberately, carefully use a crochet hook to reknit the stitches, one by one, row by row.  This is a slow process but if done correctly it can save a lot time.

Some mistakes are just too big to fix by going back a few stitches or by isolating just one stitch.  Sometimes, after much consideration and after exploring the other options, I will find that the best solution is to pull the needles out of the knitted fabric and unravel the wool back to the mistake.  Stitch by stitch, row by row are unraveled leaving a heap of wool where there once was a knitted fabric. Once the mistake has been ripped out I will carefully put the “live stitches” back onto the needles and begin knitting again.  Sometimes by unraveling my work by pulling the needles out I have lost hours of time.

Over the past few weeks I have prayed with friends who are in the hospital or facing physical challenges, reminding them that it was God who knit them together in the womb and who continues to knit them together today. That carefully, with the precision of a Master Craftsman, he knits them back together. Stitch by stitch. Row by row. As a knitter, this is a powerful image to me as I think about my own health challenges, those behind me and those ahead of me.  That God is the One who created me.  He picked out the pattern of me and called me by name. Stitch by stitch. Row by row.

I also think that God takes the same care with our thoughts and actions, our behaviour and our character. Sometimes we are carefully “tinKed”, given a gentle reminder that something in our lives needs to be changed. Sometimes we need to be unraveled in order to make a change.  But the end result is the same: we are changed.

I love to admire my knitting projects when they are finished.  I show them to my family and friends.  I take pictures and post them online. I’m proud of my work, the skill involved, the challenge that was accomplished.

I believe that God does the same with us. He looks at us with a smile. He admires us. He sees where we’ve been and who we are becoming. And with joy continues stitching us together.

Stitch by stitch. Row by row.

H.

Dear Family and Friends,

It’s been a while since my last post and truly, there wasn’t much to report.  The treatment that I was on had good results and we continue to wait over the next few months to see what types of lasting effects it will have produced. I have had a few CT scans to begin to monitor what the treatment has already started to do and many of the nodules have been reduced and continue to shrink.  There is still that one nodule that continues to baffle each of my doctors (the oncology team, infectious disease and lung doctors).  Yesterday when I saw Dr. Kurvella he reminded me that I have always been in the habit of keeping them on their toes and this thing in my lungs proves no different.  He has suggested that we consider an open lung biopsy in order to get definitive results about what it is they are dealing with.  In the next few days he will confer with the other doctors to see if they agree with this plan.  Dr. K reminded me that without knowing with absolute certainty what this thing is that they are just guessing about how to treat me.  He also said that he was pretty sure that I would want him to suggest treatment options based on fact rather than good guesses.  With tears in my eyes and a smile on my face I said that my heart/emotions would rather that he make good guesses but my mind/thoughts think it would be better to have decisions be made based on certainty.

I must admit this threw me for a bit of a loop.  I had been feeling really good after the treatment at the beginning of the summer.  In fact, I was talking with someone just after my treatments and I surprised myself when he asked “how are you doing these days?” and my answer, without thinking was “GREAT!”  I actually had to take a step back because I don’t remember the last time I could answer that way and have it be true.

Also, I have picked up another infection.  I have a persistant cough from deep in my lungs.  I’m pretty tired and yesterday I was fighting a pretty high fever.

I’m not sure what else to say.  Today I’m doing pretty okay with the news of the possibility of the biopsy.  I go back to the doctors on September 19th and we’ll put together an action plan.

School started this week and I had planned a different beginning to the school year than the one that we are facing as a family.  At the same time, I am convinced of these truths now, more than ever… That God is good. He has a plan for my life.  He loves me, deeply.  He sees me.  He hears me.

With that,

Heather

Dear Family and Friends,

We just returned home from Princess Margaret and my third round of treatment.  It was pretty uneventful, the IV went in on the first try, there wasn’t any pain and the time went by quickly.  Nathan enjoyed his time at The Magic Castle and Jeff was able to get some work done.  I was able to fit in a regular treatment (scheduled once a month) before a quick visit with the doctor to monitor my progress.  To be honest, there’s not really much news to report.  Things are going well and I have follow up scans scheduled in August for after my last treatment to see how my body has reacted.  My cough has changed dramatically in the past few weeks since my treatments and I am not as quick to get out of breath as before.  These are good signs.

Last week while I was having my treatment I sat and listened to two messages that influenced our decision to go ahead with the bone marrow transplant two years ago.  (You can read about that decision process in the Archives section, July 2009). The first was titled Mighty To Save and the second was about Faith, both talked about the story of David and Goliath. I was encouraged again by these messages, especially the one  on faith.

Now, I’m guessing that most of you know the story of David and Goliath but that’s usually where we stop telling the story.  David defeats Goliath and that’s the end, right? Wrong!

Take a look at 2 Samuel 21:15-22

Wars Against the Philistines

Once again there was a battle between the Philistines and Israel. David went down with his men to fight against the Philistines, and he became exhausted. And Ishbi-Benob, one of the descendants of Rapha, whose bronze spearhead weighed three hundred shekels and who was armed with a new sword, said he would kill David. But Abishai son of Zeruiah came to David’s rescue; he struck the Philistine down and killed him. Then David’s men swore to him, saying, “Never again will you go out with us to battle, so that the lamp of Israel will not be extinguished.”

In the course of time, there was another battle with the Philistines, at Gob. At that time Sibbekai the Hushathite killed Saph, one of the descendants of Rapha.

 In another battle with the Philistines at Gob, Elhanan son of Jair the Bethlehemite killed the brother of Goliath the Gittite, who had a spear with a shaft like a weaver’s rod.

In still another battle, which took place at Gath, there was a huge man with six fingers on each hand and six toes on each foot—twenty-four in all. He also was descended from Rapha. When he taunted Israel, Jonathan son of Shimeah, David’s brother, killed him.

These four were descendants of Rapha in Gath, and they fell at the hands of David and his men.

***

Did you know that part of the story?  The Philistines came back. The Israelites had to fight again. And again. And…

This was of great encouragement to me as I sat receiving treatment for the lymphoma in my lungs.  I had thought that this cancer story was coming to a close, that I was close to the finish line, that the war had already been won. But just as in the story of David, Goliath, the Israelites and the Philistines, the last 12 years from my diagnosis until today have just been part of my story.  There have been many battles along the way and many victories won. I celebrate each one, because of God’s great faithfulness to me.

As I listened to the message on Faith the speaker began to describe some of Goliath’s armour, his shield.  He described it as being as large as a door, made of thick wood, so heavy that soldiers would have worn spikes on their shoes to stop the shield from falling right on their feet. And before the soldiers marched into battle, these shields were drenched in water in order to extinguish fiery arrows from the enemy.  Doesn’t that give you a new picture about the Shield of Faith  as part of the Armour of God that Paul describes in Ephesians 6:10-17?

I want to finish this post off with the chorus of a song that has been of great encouragement to me throughout the years.

He Will Carry Me by Mark Schultz

Chorus:

And even though I’m walkin’ through the Valley of the Shadow
I will hold tight to the hand of Him whose love will comfort me
And when all hope is gone and I’ve been wounded in the battle
He is all the strength that I will ever need
He will carry me

***This is true for me in the middle of my circumstances, the valley, the mountain and the road between.  This is true in the middle of your circumstances, the valley, the mountain and the road between.  His love will comfort you. He is all the strength you will ever need.  He will carry you.

With love and joy,

Heather

Dear Family and Friends,

It has been one week since my first treatment of Rotuxamib.  Things went well last week for the IV and while it was a long day, everything went smoothly.  I came home tired and spent the rest of the week resting and trying to avoid the heat.  I am still trying to figure out whether my tiredness, fatigue and low appetite are because of the treatment or because of the extreme heat.  Probably a bit of both.

Last week, Jeff and I met again with Dr. Crump. We realized that after our initial visit with Dr. Kurvella and Dr. Crump which mostly was to establish an action plan and to put that plan into place, that we still had a lot of questions about what post transplant lymphoma is and how it effects me and my case personally.  Dr. Crump spent some time answering our questions and continued to reassure us that we are on the right track.

After some time of asking questions and listening to answers I asked a question that had been hanging over me, thoughts still unformed as to what the real question was. I asked something like… so what does this post transplant lymphoma mean for me based on being a bone marrow transplant (bmt) patient? To be honest I’m still not sure the root of the question and what I was looking for.  He told us that this lymphoma was a new cancer diagnosis, separate from the CLL that had been treated in the past and by the bmt.  After giving us more information he asked me a question to clarify what I was looking for:  Are you asking about your prognosis, how long you will live?  As soon as he asked I realized that this was not the question that I had been asking. In fact, this question is rarely a concern to me.

I told Dr. Crump (and reminded myself) that I am not concerned about the prognosis of my case, about the estimated time I have remaining now that I have a new cancer diagnosis.  I know that only God knows the days that are numbered for me.  Each of us, in the middle of our own circumstances, are only given today.  I was reminded this week about the Israelites, as they wandered around the desert for 40 years (you can read their story here… (Exodus 16) 

I was reminded that God provided for the Israelites, what they needed, enough for each day. Not enough for the month, not enough for the week (although on the day before the Sabbath the Israelites were required to gather enough for that day and the Sabbath), just enough for today.

And isn’t that the same for us, God gives us what we need.  His mercies are new every morning (Lamentations 3:23-24).  And also, This is the day that You have made.  I will rejoice and be glad in it.

I’ve thought about this a lot over the past few weeks, about how I/we should live my/our lives.  About what it means to live today.  I mean to really LIVE.  To be present in the moment, wherever it finds you.

Nathan and I have been watching the movie Kung Fu Panda a lot lately.  One of my favourite lines comes from the Kung Fu Master to the newly named Dragon Warrior, Po.  He says, Yesterday is history.  “Tomorrow, a mystery.  Today is a gift, that is why it is called the Present.”  Each one is important, not to be ignored.  But today is what is in front of us.  Today is the day that we LIVE.

There is a song that I’ve really enjoyed over the years by an artist Mark Schultz called Time That’s Left.  It asks the questions: What will you do with the time that’s left? What will you do with the time that’s past? What will He say when your time has come?  I enjoy the song more than the video but the words always remind me to live my life with intention, to live now, to live with purpose.  Now, I can’t say that I always do this, but it is my goal.

As I mentioned above, today is Round Two of my fight, there are four rounds of this battle and the scores won’t be tallied until the end. But in the meantime, I will live today, be present in the moments ahead of me, strengthened by God’s grace, peace and strength, just the right amount for today.

Enjoy your day, whatever it holds.

Live fully today,

Heather