The Worst Day of Our Lives - 2 Years Later

February 24, 2010

Diagnosis Day - two years later. Henry and I concur, it marks the worst day of our lives. I wrote the following story a year ago. But for some reason I couldn't post it at the time. A year later, it is that much longer ago and I can handle posting it.

So much has happened in the two years since Diagnosis Day. It is 11:25 in the morning here in Winnipeg - a sunny day, Lydia will come home for lunch at noon. I am sitting on the couch in our new kitchen / family room, the 2010 Vancouver Olympics on the new TV, 36 weeks pregnant with Harry’s little brother. I thought I was going into labour last night, though it is more likely that the Indian food we ate for dinner did not agree with Baby S. At any rate, neither Henry nor I could sleep, awoke at 3:00 am to find the bed empty beside me. My back was really hurting and I had a wicked cramp in the my lower right side, so I went downstairs to find Henry. He came upstairs to give me a back rub. I have never had back pain like this before, was this back labour? I could not get comfortable - something else that was unusual. The only comfortable position I could find was sitting up in bed. So I tried to sleep sitting up - I think I fell asleep finally by 5:30 or 6:00 am. I had the overwhelming feeling of panic that I just *have* to pack my bag for the hospital tomorrow. I have never had a bag ready for either Lydia or Harry’s birth - we’d planned (and had) a home birth with Lydia (before we had to have an emergency transfer to the hospital for her retained placenta) and Harry was 3 weeks early - and I hadn’t yet packed my bag. So today I will.

I kept telling Sebastien, “Not today, you can’t be born today, not on this anniversary”. Good boy - he listened to Mommy!

Fortunately, I feel better this morning. I’ll see my midwife this afternoon. I am wondering if Baby S has just shifted and is settling down for birth - I am feeling kicks right in the middle under my ribs - when he has always been lying not quite head down (head to the right side) and I was feeling kicks on my right side. We’ll see.

Indeed (now it is nearly midnight) - some of my discomfort might have been Baby S’s movements - he has dropped and is head down and engaged ... am feeling lots of kicks right under my ribs in the middle - different from usual. Am measuring 36 inches and tomorrow I start week 37. So could be soon! Didn’t quite get my bag packed today - but will finish that tomorrow.

Love,
Cynthia

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February 24th, 2009

This morning we used the very last baby wipe in the house to wipe Lydia after her morning pee. We have no more baby wipes in the house. Just three or four empty Huggies baby wipes boxes. When I went into the water closet and saw the open lid on the wipes box, I sighed a sigh of resignation. We are done with wipes. We really have no more need for baby wipes. I had bought a big refill box just before Harry died. We have now worked our way through the seven packages of refills.

Every time I used a wipe, the smell reminded me of Harry. The smell of changing his diapers.

Today I pulled out our brand new box of ‘big girl flushable wipes’ we bought on Friday at Superstore for Lydia. Lydia is like her mum and gets very upset with her Dad when he flushes wipes which are clearly marked “do not flush” into our easily clogged and overflowing toilet. So we now have a brand new box of flushable wipes. Harry never used flushable wipes.

Today Lydia will go to school and daycare. I’ll go to the University. Henry will go to work. Lydia and I will go to Kindermusik, then the three of us will rush to catch as much of Jack Rabbits Hockey as we can. Today will pass and move into tomorrow.

But this is not just today. This is a year since Diagnosis Day.


Diagnosis Day

Exactly a year ago today, almost exactly at this moment, we were given Harry’s diagnosis.

I have replayed and replayed that moment in my head. I wish I could turn it off, but I know it will never go away. Of course, in some way I don’t want it to go away. I want every moment of my life with Harry carefully and perfectly preserved.

We were on CK4.

It was only about an hour after we had come back from the CT scan. Quick news is rarely good news.

I suppose the empty radiology department should have alerted us to the gravity of the situation, that and the fact that they had bought in a radiologist and technician on a Sunday morning to perform a CT scan that couldn’t wait even one more day. But you don’t think these clear thoughts at a time like this.

Henry was sitting in the chair by the window. I was standing beside Harry and the crib, with the side of the crib down when Dr. M walked into the door, clutching a pile of papers in his left hand.

One look on his face said it all.

“I am sorry, it does not look very good,” he said, his eyes dangerously close to glassing over and brimming with tears. “There is a massive tumor in his liver and it has spread to his lungs”.

I collapsed on the end of Harry’s crib.

“NO!” I screamed. “Not Harry, not my Harry, No, No, No, No, No, No, No, No, No, No. Not my Harry.”

Dr. M left to give us some privacy.

I was overwhelmed with tears. I couldn’t stand up. My legs simply folded underneath me. No. It was not possible. Not my Harry. Take it away. Make it go away. Take those words back. Not my Harry.

I screamed and sobbed over and over, “Not my Harry. Please not my Harry”.

And my darling wee Harry. He sat in his onesey on the crib. Little arm immobile on the IV board. He sat with his big blue eyes, silently looking at me. Not saying a sound. Silently looking at his sobbing Mummy. His blue eyes just looked at me questioningly, “What is the matter, Mummy? Why ever are you crying, Mummy?”.

Henry stormed out of the room to track down Dr. M, who was at the nurses’ station just outside our door. I could hear them talking outside of Harry’s room.

“How, what could have caused this?” Henry demanded to know. “Was it the baby food?”

We had tried a new brand of organic baby food since November. Very recently a number of batches of cereal had been recalled because it was rancid. It turns out we had been feeding Harry from three of the rancid boxes. I hadn’t noticed. Have you ever tasted baby cereal? It tastes blah and like cardboard. So I didn’t think anything of this new brand which, like all the others, tasted blah and like cardboard. Maybe if only one of the boxes had been rancid I would have noticed. But all three were and all three smelled the same. It was a new cereal, so I didn’t know that it didn’t smell the way it was supposed to smell. I am not sure if it was rancid so much as just stale.

At any rate, Henry was terrified that somehow ingesting this cereal had caused Harry’s liver cancer.

I could hear Dr. M reassure Henry, “There is no way this has been caused by baby cereal.”

Henry was not so easily dissuaded, “How can you be sure? How can you know? I did some research yesterday night and rancid cereals can cause liver cancer”.

Dr. M gently replied, “Put it out of your mind, that is not the possible cause. I think your wife needs you.”

I guess I had been sobbing, wailing and crying the whole time during this conversation.

In that moment, our world fell apart. We had been walking between two of many possible futures and in that moment we jumped, from the world we had been living in, the “Mommy, Daddy, Lydia and Harry perfect family universe” to the “Mummy, Daddy, Lydia, Harry-has-cancer-family-on-the-edge-of-a-nervous-breakdown universe”.

Henry came back into the room. He picked up Harry. Harry still maintained his sweet silence and looked at us, his sobbing parents, with his big blue eyes and his quizzical look on his face.

My phone rang. I answered. It was my friend Jodi. Was everything okay, she wanted to know?

“Jodi, oh my God, Jodi, Harry, Harry, Harry has cancer. They just told us Harry has cancer.” The words spilled out in a jumble. My heart raced. The room spun. Harry has cancer. I remember kneeling on the pull out chair-bed by the window.

“Wait, wait, what do you mean? Cancer? He has cancer? I’ll come right away. Where are you. I’ll come right away.”

I don’t completely remember if I have the details of that conversation, or any conversation really for that matter, completely correct. But I know that is the gist of what was said.

We knew we had to phone our families.

I think the hardest thing for both of us was telling our parents. We both dreaded more than anything telling our parents that their wee Grandson had cancer and it did not look very good.

I was so worried for my Mum. I dreaded telling my Mum. We were still reeling from her house fire in 2005 and her heart attack a year ago. How could I tell my Mum, my dear sweet Mum, who had lost her own husband to cancer thirty years ago, that it was all happening again. But it was Harry, my wee Harry, this time?

I have been told by many people through out this experience with Harry that I am a strong person. I don’t really know what that means. I just do what I know how to do. I suppose if I know what to do, it is because I come from a family of very strong women. Women who are quiet, shy, rather reserved, don’t announce their presence in the world or demand a great deal of space or attention. But women who silently, in their quiet, patient way, work and do and hold up the worlds of others.

I talked to my sisters, one in Poland and one in France. The conversations are a blur, except for the two times I said those words, “Harry has cancer. Liver cancer. It has spread to his lungs, it does not look good”. We didn’t know the words ‘stage four cancer’ or ‘primary rhabdoid tumor of the liver’ yet, those were to come.

We agreed that we could not let my Mum be alone to hear this news. I think it was Cecelia, my big sister Cecelia, always in control and always knowing what to do. Said she would phone my Aunt Phyllis and Uncle Murray in Mississauga to see if they could drive to Guelph to be with my Mum this afternoon, so that they could be there when I gave Mum the news. I come from that kind of family, where we can phone up our Aunt and Uncle on a Sunday morning and give them terrible news and ask them to jump in their car and drive for 45 minutes to be with my Mum. And they do it, without question and without hesitation.

The second hardest thing I have ever had to say to my mother was, “Mum, we got the CT scan results and it does not look good. Harry has cancer”.

Jodi arrived. Kathleen and Gareth arrived. Dave and Grace arrived.

Sometime in between all of their arriving we met Dr. Stoffman. Harry’s oncologist.

We had our first meeting with Dr. Stoffman in a tiny closet of an office on CK4. We were shaken to our very core, raw, full of disbelief, stunned ... cancer, Harry has liver cancer, none of this made any sense. He had the flu, he just wasn't getting better from a nasty flu.

At this first meeting, Dr. Stoffman told us that, thought they would have to do a biopsy surgery to know for certain, their first guess was that Harry had 'hepatoblastoma' a childhood liver cancer. His cancer was a Stage 4 - which meant it had spread or metastasized from the original site to his lungs and lymph nodes and because of the extent of the liver tumor, around 80% and all four lobes of his liver were involved, surgery was not an option at this point. Harry would need chemotherapy to shrink the tumor first then we would attempt to surgically remove the tumor.

This was the best case, we would do 4-6 rounds of chemotherapy and the metastatic disease would be gone and the tumor would have shrunk enough to allow for a complete resection. While you can't live without a liver, livers do grow back - you can remove most of a liver and it will grow back in a couple of months.

I think one of my first questions was about a transplant, "Can I give him part of my liver? You can transplant part of a liver right? I can give him part of my liver?" I would have done it in a heart beat for my son. I think his answer was something like, "let's not get too far ahead of ourselves".

"What are his chances?, What are his odds?" we wanted to know.

"A Stage 4 Hepatoblastoma diagnosis has around a 20% survival rate".

There was a glimmer of hope, that was all I needed, the faintest, palest glimmer.

I can't recall what else Dr. Stoffman told us that first meeting. But I do remember leaving the little room and going back to Harry's room feeling like I had been hit by a truck, but also relieved. After two terrifying days, we at least knew what we were facing.

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Harry’s Journey

Later that evening we were transferred up to a room on CK5, the hermetically-sealed oncology ward at Children’s Hospital. One of the first things I noticed was the smell. The ward has a very particular smell. I came to identify that smell with the smell of chemotherapy chemicals, slowly dripping down IV tubes, into central lines, embedded into tiny chests.

That night, alone on CK5, sleeping on the pullout chair beside Harry’s crib. That night I prayed as I have never prayed before.

In the dark, with only the blue light from the display of the IV monitor illuminating the room. I held Harry in my arms and I prayed. I wept and I prayed.

“God, I don’t know how to do this. Help me God. I don’t know how to do this. Please God, you have to help me do this”.

Unfocused at first, but then the prayer settled into a sort of mantra.

“Oh God, oh Jesus. Please carry me. Please hold me. I can carry my son. I know I can carry my son through this, but I need help. I need someone to carry me so I can carry my son.”

In my mind I saw the footsteps in the sand along the beach. From the famous poem, where the one set of footsteps represents the times when Jesus carried the petitioner. I saw us three walking along the beach. Me carrying Harry and Jesus carrying me.

“Please hold me Jesus. Please carry me, as you have carried so many others. Please carry me so that I can carry my son. Please help hold me up, please give me strength, so I have the strength to carry my son.”

And then.

“God, I don’t know how to do this. Show me the way God. Please show me the way. I will carry my son. I will hold my son. I can do that. I can hold him through this. But please hold me and guide my steps. Please show me the way.”

I stood holding Harry for at least an hour. Praying that same prayer over and over and over. The words spilling out of my mouth, rocking rhythmically back and forth with Harry pulled close to my chest. My eyes clenched shut, tears streaming down my face.

“Please hold me God. Please carry me God. Please hold me so I can hold up my son. Show me the way God. Please show me how to do this. I don’t know how to do this. Please show me the way.”

Eventually Harry fell deeply asleep, and I exhausted, put him gently in his crib, collapsed into the pull out chair-bed, and fell into a fitful and restless sleep.

That night I had a dream.

I saw a map on the wall. It was like an old-fashioned treasure map that you see in a children’s adventure movie. Aged and worn brown paper, the edges all black and burnt.

The top of the map was entitled, “Hendrik’s Journey”.

On the left side of the map was an ‘X’, a marking of “You are here”. On the far right side of the map was our destination, marked with the words, “Harry is healed”. Vast, open, empty brown space stretched in between, in between our start and our destination. We were four little figures on the map. In the dream we started walking, little figures moving along the brown parchment, as we walked obstacles appeared before us. Obstacles for us to tackle. We were followed by our path, marked out behind us by a dotted black trail.

I was being shown how to walk the journey, from here to the place where ‘Harry is healed’. One day at a time. We would face each obstacle as it came, we would deal with each one in turn, but we would never lose sight of where we were going. No matter what mountain or stream appeared in our path. We would keep our sights trained on our destination, “Harry is healed”. Step-by-step we were going to get there. There was no other alternative destination. No other place to go. The path would be revealed as we journeyed, but the destination was ever-clear. We were going to the place where “Harry is Healed”.

I woke up in the morning and remembered the dream. I knew in an instant. This is how you’ll do it. This is how you will walk Harry’s journey. I knew exactly how to do this. I had just done this. Suddenly, it felt like, this is the whole reason why I did my doctoral thesis. So I would know how to do this. So I would know how to walk this journey with my son.

When Harry was born I knew that I had to finish my doctoral thesis by December 31, 2007. I had to have my thesis defense before Christmas and have the final draft of the thesis submitted for binding to the university before the final cut-off date in late December. I had no idea how I was going to do it. I simply set in my mind that I was going to defend in December. I would not think about how much I had to do, about how I was going to get it done. I simply set the destination and refused to let any other thought enter my head than that I would defend my thesis in December.

And then I focused, day-by-day. Each day, I worked a little bit. I never let myself think too far ahead, I focused on the day. If I thought too much about how much work I had to do with a newborn and a three-and-a-half year old to manage I would become paralyzed with fear. So I didn’t think about it. I put my head down, literally and figuratively, and worked four or six hours each day, during naps, once the kids were in bed. Slowly, I chipped away at it. When anyone asked, especially when a committee member asked, I insisted, I was going to defend in December, if not earlier. And I did it. I defended on Tuesday December 18th and submitted my thesis for binding a whole day early, on Thursday December 20th.

That honestly felt like the whole reason why I had toiled for eight years to finish my doctoral thesis. I felt like, if I never, ever, use the damn thing, it will have been worth it just to learn this lesson. That one lesson about how to accomplish the impossible. Set the goal, never let it out of your sight, and then just walk one day at a time to get there.

I remember telling Henry later that day that I now knew how we would do this. We would call it ‘Hendrik’s Journey” just like in my dream and we would walk it together, one day at a time.

And so that is how ‘Hendrik’s Journey’ officially began.

Our House on French CBC

Here is a link to a video clip that French CBC / Radio Canada did at our house last friday (January 29th) - they were looking for french speaking renovators (which our renovation company "Make it Home" happens to be) to talk about people finishing up renovations for the government HRTC (Home Renovation Tax Credit) which expired February 1, 2010.

So you can get a sense of what the house is starting to look like ... it starts with Mitch putting up a cabinet in our bathroom and then shows a lot of our main floor.

http://www.radio-canada.ca/regions/Manitoba/emissions/emission_tele.asp?pk=87

(Sorry you have to cut and paste this link - for some reason Blogger won't show the link when I try to insert it as an actual hyperlink in the text ... AND you might have to use the calendar on the left of the page to go to Jan 29th - we are at 6:01 in the broadcast ... hope it works!).

Peace,
Cynthia

p.s. I look terrible - I was at the house cleaning so we could move in the next day and they had told us it was just Radio Canada - so I didn't worry about even brushing my hair ... then they show up with a TV camera and decide to do the piece also for French CBC TV!

18 Months

It is officially now 18 months since Harry passed over.

Today I feel ... acceptance.

There is still a jagged scar, which I will have for life, where the huge, gaping hole that ripped open in my heart when Harry passed away is healing over.

Yes, my heart is mending - but it will never be the same.

Yes, I am learning how to live without my wee Prince Harry, our Huggypet, our Hares-y-Bares-y.

Yes, today I am experiencing happiness, joy over being back in our home, anticipation over Sebastien's upcoming birth, loving having Lydia home for lunch and our play time together after school (we played Barbies ...).

But every day there is also a thread of sadness. Still missing Harry every day.

Mummy loves you my sweet Prince.

Love,
Cynthia

On the Breathe

This is a poem I wrote in November about Harry.

On the Breathe

On the breathe he came in
- in a rush of water.

On the breathe he left
- in a rush of water.

In between he breathed in pure love,
harmony, happiness, and joy.

Can you feel the
wind of his breathe on
your cheek?


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Love,
Cynthia

Copyright 2010 Cynthia Neudoerffer

Home Sweet Home

We are HOME!

We slept in our house for the first time in nearly 5 months last night. It has been a long haul, but we are HOME. I am sitting in a comfy chair in the 'sun room' area of the kitchen aka 'the love room' according to Lydia and typing away in my laptop - wirelessly connected to the internet. Ah, life is good.

The renovation is still not finished - they still have a couple of weeks of work. The front porch and the exterior won't be finished until spring, we don't have kitchen counter tops, a kitchen sink, a bathroom sink, the tiling still needs to be finished in the bathroom (requires the bathroom sink), as does the tiling to put in our washer and dryer ... our microwave oven isn't in yet BUT enough is done that we could move back home! We have 2 working toilets and one sink and the bathtub does work and our bedrooms are pretty much done (just need closet doors in Lydia and Sebastien's rooms).

But we are home, I can FINALLY begin nesting and stop spending 3 hours of my day commuting! Lydia can walk to school, come home for lunch and play with her friends! We actually had time to finish home reading and do some music practice this morning before school!

What a big day for Lydia today. She proudly set off (on time!!) BY HERSELF for the first time to walk to school (granted she only has to walk across the street and their are patrols at the corner, but hey, it is a big deal to a six year old).

I gave her a big hug and kiss on her way out the door and she reminded me, "Don't come and get me for lunch, I'll come home all by myself". She walked so proudly across the street by herself, only looking back home once she was walking up the front steps of the school.

It feels sooooooo good to be home. As Lydia reported on our way downstairs last night, "the stairs still creak in all the same places, but everything is just so much nicer!". It is kind of surreal - it definitely is our house, but parts are so different. I adore my kitchen / love room. Somehow our house feels twice as big, even though the square footage hasn't changed at all. Amazing what improving the flow in a house can do.

Well, Lydia will be home for lunch in 30 minutes, I'm off to vacuum the attic floor ...

Love,
Cynthia