Wednesday, May 27, 2009

Relay for Life - Prince Harry's Court

If you would like to pledge to support our Relay for Life team, Prince Harry's Court just click this link below (you may need to copy and paste the link into your web browser):

http://convio.cancer.ca/site/TR/RelayForLife/RFL_MB_Winnipeg_?team_id=143850&pg=team&fr_id=3720

If that doesn't work, go to the "Pledge a Participant" page on the Relay for Life, Winnipeg web page:

http://convio.cancer.ca/site/TR?fr_id=3720&pg=pfind

and search for the team "Prince Harry's Court" - you should find us and get a link to our team page. You can either pledge the team or an individual participant.

If you would like to buy a Luminary in memory of Harry or someone else you know who has battled cancer you can do so at this link:

https://secure2.convio.net/cco/site/Ecommerce?PROXY_ID=3720&PROXY_TYPE=21&FR_ID=3720&VIEW_PRODUCT=true&product_id=1385&store_id=9642

if this doesn't work then go again to the Relay for Life page and look for "Buy a Luminary" in the Get Involved section on the left hand menus.

Here is the link for the general Relay for Life - Winnipeg web page:

http://convio.cancer.ca/site/TR/RelayForLife/RFL_MB_Winnipeg_?pg=entry&fr_id=3720&JServSessionIda010=mjvjb634h1.app33d

Thank you so much for your support!

Peace, love and walk on,
Cynthia, Hank, Lydia, Angel Harry and all of Prince Harry's Court

Rhabdoid Cancer

I have not posted a lot of details about Harry's particular type of cancer. But I thought I would today.

When we first got the diagnosis of a 'primary rhabdoid tumor of the liver' on March 6th, 2008, we had no idea what were were up against. Initially, Harry's doctors thought he had an hepatoblastoma - one of the more common types of paediatric liver cancers. Complete testing of his biopsy sample proved otherwise, and resulted in the diagnosis of rhabdoid cancer instead.

In truth, during Harry's whole journey with cancer, I don't think I really knew what we were up against. If he had been diagnosed with a Stage 4 Hepatoblastoma he would have had about a 20% chance of survival. When we were given the Rhabdoid diagnosis, I recall asking his doctor, "Okay, so what are his chances now?" I guess the doctor's couldn't face telling us, "Somewhere between 0-1%" so instead they said, "No better than his odds were with Hepatoblastoma".

One of my first nights home from the hospital I recall doing a google search on 'rhabdoid cancer'. All that came up were links to obscure journal papers and the Rhabdoid Kids site. You would think, having just finished a PhD, I would have been all about digging into the research side of this disease. But my instincts told me otherwise. I read one journal paper and just couldn't digest any of the information. I switched to the Rhabdoid Kids site, read about a few Rhabdoid kids, but could not bring myself to even open the Rhabdoid Angels page. I just didn't have the energy to read about other kids, I could only muster the energy to focus on Harry.

My intuition where Harry is concerned has been uncanny, every since he was first conceived. And I so clearly recall every ounce of my body saying, "Stop, stop looking at web sites. Don't focus on the science of this disease. That is not your job this time. You need to focus on healing Harry, taking care of Harry, loving Harry. You are not meant to focus on the technical side of this disease".

I listened to that internal voice and I didn't do any research or reading about Rhabdoid cancer again till after Harry had passed over in August.

Once Harry had died and I had hours and hours of empty days to fill I started to obsess over reading everything I could about Rhabdoid Cancer.

I think I am glad I didn't know just how cruel this disease is while Harry was alive. I don't think I could have had the courage to fight and maintain my hope and optimism had I know just how poor his chances really were.

Rhabdoid cancer is known as the rarest and most aggressive of all childhood cancers.

It was first discovered in the kidneys in 1978. In 1991, doctors realized that a class of brain tumors was actually the same cancer and so classified the brain tumor version, AT/RT or Atypical Teratoid / Rhabdoid Tumor. Basically, now the cancer is classified as either AT/RT or non-CNS MRT (Malignant Rhabdoid Tumor). Renal (kidney) and AT/RT are the most common variants of this cancer. 'Officially' Harry's cancer was an extra-Renal, non-CNS MRT of the liver.

A presentation I found on the web, put together by a doctor in St. Louis in 2007, listed a table of all of the published cases of primary Rhabdoid liver cancer that the doctor could find.

There were 25 cases listed.

Yes, that is it. 25 cases documented by 2007 in the entire english language academic literature. Of those 25 cases, three had survived, 2 girls and one boy. For some reason, girls have a slightly higher survival rate. So, since not all kids who have rhabdoid liver cancer will have a paper written about them, Harry choose a very exclusive club - there have been maybe 50 kids ever in the world with this type of cancer.

Go figure. My baby doesn't just get cancer, no, he has to get the rarest and most aggressive variant of the rarest and most aggressive childhood cancer of all.

The only path to long term survival is to remove all of the cancer and that means surgery. Chemotherapy alone is not enough, the primary tumor HAS to be surgically removed for survival. Rhabdoid cancer is treated with the strongest chemotherapy they can give a person. Most adults given the chemo Harry had are unable to move out of bed for days, they are so sick. For those kids who live long enough to start chemotherapy, the usual pattern is that the cancer responds well at first, but it is so damn smart, that it pretty soon figures out the chemo and relapses. Most children die with weeks of their first relapse.

Because the cancer grows so quickly, almost all kids exhibit very few symptoms until a few weeks before diagnosis and then, like Harry, present only with mild flu-like symptoms. Most kids are diagnosed at Stage 3 or 4. Many kids don't even survive long enough to start chemotherapy.

Given how extensive Harry's tumors were when he was diagnosed, by all rights, he should have died that first week in hospital.

So if you ever wonder whether we managed a miracle with Harry, the answer is an unqualified YES. That Harry survived to actually start chemotherapy, that he responded so well, that he smiled and laughed and bounced through each brutal round, that he got to come home, that he got to celebrate a first birthday, that he got to experience one summer as a little boy was all a miracle.

Strangely, I take some comfort in Harry having Rhabdoid cancer. In a strange way, it would been more difficult, I think, had he died of a more common cancer, one that most kids survive. Then we would have been left asking, "what did we miss, what did we do wrong". With Rhabdoid cancer, I know we really did everything we possibly could do for Harry. We gave him the very, very best shot we could.

But I sense that Harry choose Rhabdoid cancer, if it is possible to say such a thing, because he knew he had to come and give us all this love, but then go back to God. He had to choose a cancer we couldn't possibly have beaten.

I always said that whatever child followed Lydia was going to have to do something 'big' to not be caught in her shadow. Well, this wasn't quite what I had in mind. But Harry sure did do something big with his short life, of that there is no question.

Peace,
Cynthia

Wednesday, May 20, 2009

Relay for Life 2009

Henry, Lydia and I will be leading the team "Prince Harry's Court" at this year's 2009 Canadian Cancer Society Relay for Life, on Friday May 29th.

This year's event is being hosted by the Winnipeg Goldeyes Baseball Team, at their stadium at the Forks, in downtown Winnipeg. The husband of a friend, Andrew Collier, is the GM of the team. Back in March he asked us if he could talk about Harry's story on his GM blog and as a way of promoting the Goldeyes support of the Relay for Life. Of course we said yes. At the time, that nagging little voice in the back of my head was saying, "You know you should be doing the Relay this year in honour of Harry, don't you?"

I just didn't feel I could do it this year, after being at the Relay last year with Harry. But I kept on having this sinking feeling, which I am getting used to now, that we should be doing it this year.

Then a week ago, the organizing committee co-chairs for the Winnipeg event emailed us and asked if we would like to cut the ribbon to inaugerate the event this year at the opening ceremonies, in honour and memory of Harry.

Of course we said yes. And, of course, I decided to listen to that little voice, (damn, why is she always right?) and participate in the event in honour of Harry.

So, though we only have a week to get organized. I know our amazing 'community of love' will be right here with us.

I will post more tonight on how to either join our team and particpate along with us in the Relay for Life as part of "Prince Harry's Court" or how to donate to support our team.

Love,
Cynthia

Tuesday, May 5, 2009

Mice and Angels

We've had mice in our house since November 2007.

It started with three mice who moved in and decided to set up house in the bottom of our linen closet in the upstairs hallway. They must have thought they had found Nirvana for the winter season. They'd begun making a nice nest in an old swim towel and had found the mother-lode of food to sustain them for the winter - two of those fabric tube, grain-filled heating pad things, that you dampen and heat up in the microwave to wrap around your neck to soothe sore muscles.

Scared the living daylights out of me one evening when I went to get a towel from the linen closet and one of them jumped out at me.

I immediately bought a couple packages of wooden mouse traps, set them with peanut butter and put them in the linen closet. In quick succession I killed two of the mice, but the third one proved to be more crafty. I took everything out of the linen closet and washed the lot and cleaned out the closet with bleach. The third mouse wisely decided to abandon that winter home, but I couldn't figure out where it had gone. I set traps around the house, but never saw it again, and didn't see evidence of mouse droppings anywhere either.

I naively hoped she had just decided to seek winter refuge elsewhere. Ah, not so, likely not so crafty as cautious due to her 'delicate condition'. Yep, I'm pretty sure mouse number 3 was preggers. She must have gone into hiding somewhere in the walls, but we didn't see her or her offspring again for several months.

Many months later, after Harry had passed over, I was telling a friend of mine about the mice. Mariah practices Reiki and has many wonderful reference books in her studio on different aspects of Spirit. One book we decided to check out together after discussing the mice, on the symbolic meaning in our lives of the appearance of different animals.

Well, according to Mariah's book, the appearance of mice in our homes can mean, among other things, that we need to pay better attention to seemingly insignificant details in our lives.

I figure Harry's cancer may have started growing sometime around November 2007 ... little details that need better attention.

I can't recall exactly when we started to see the mice again. Or not so much see the mice, but rather see their telltale droppings around the house. But I am pretty sure it was sometime in January, just before first taking Harry to the hospital. This time the droppings were always on the main floor, in the kitchen, behind the bench in the front hall, behind furniture in the living room.

The only place we ever again found mouse droppings upstairs was in Harry's room. Really. Poor wee thing. I remember in January of 2008, when I would get up to nurse him in the night. After he was done and we were having a snuggle in the rocking chair before I put him back in his crib, he would sometimes point to the end of his crib.

Silly me, I thought, "Oh how clever my little boy is, pointing to his crib to tell me he is ready to go back to sleep".

He might have been, he was a very clever little boy!
But he also very well might have been saying, "Mummy, look, did you see the little mouse in the end of my crib?"

I'm really glad he was always safely ensconced in a sleepy sack in his crib!

Now, I know for certain that we never found any mouse droppings in his room BEFORE we took him to the hospital. So really, it is conjecture on my part that he saw mice in his crib at all, then. He really might have just been asking me to stop snuggling him and let him get back to sleep. I'll admit, I sometimes held him long after he had finished nursing. There is nothing more peaceful and beautiful than listening to the night sounds of your home, with your family safely tucked into their beds, with your precious little one asleep in your arms. I would sit and drink in Harry's smell, always telling myself to treasure these nights he and I had together.

I didn't have much time to worry about the mice when Harry was diagnosed. I had a number of traps set around the main floor of the house, but didn't have much luck catching anything.

But they were visiting Harry's room, evidence of which I found in April, after he was home from the hospital. He had been given a number of lovely stuffed animals in the hospital - a large number of different 'big cats' in particular. Until this time I hadn't had many stuffed animals in his crib, but given that he was over a year and well able to move all around his crib, I had set up a line of his 'big cats' at the end of his crib, to watch over him.

Again, back in his room and up to nurse in the night, Harry again pointed to the end of his crib one night. Too tired and unfocused in the night, I had tucked him back into bed and he had fallen right back to sleep, as he always did. But the next morning, when organizing his bed, I found a mouse turd in amongst the stuffed animals. Yuck. As if dealing with cancer weren't enough, my poor dear, having to deal with mice in his room as well, to top it all off. What an indignity!

Well, those stuffed animals came out of his bed right away and into the wash. Bleached Harry's floor and set several traps in his room, notably by the heat register and under his crib. Don't think I caught anything, but didn't see any more mice droppings in his room, either.

Over the next year, from last April till this March, I have set upwards of 20 different traps in the house. We bought an electronic mouse trap and set that in the basement, managed to kill one mouse I think. We bought those useless 'white noise' things that you plug into your wall sockets, which are supposed to emit a high frequency noise to keep mice away, and put them all over the house. They don't do a damn thing, by the way.

I have refreshed the peanut butter numerous times - the mice just licked the traps clean, left some poop to say thanks for dinner, and went on their merry way.

I tried setting the traps with bacon. The mice carefully removed every last trace of bacon without setting off the traps.

I have, over the past year, killed maybe five, six, or seven mice. Obviously the slow or less dexterous ones. In late February or early March this year, I noticed the mouse activity was getting really crazy. We were now starting to see them running about the house, damn buggers were getting bold as anything, coming to clean up the crumbs under the dinner table about fifteen minutes after we finished dinner.

I was reaching the end of my rope. I was so sick and tired of those damn mice!

On Sunday March 22, I was up working on email after putting Lydia to bed. Henry had just left the day before for Amsterdam. Within a five minute period I saw two different mice run across the dining room floor. I had really had it.

At my wits end, I cried out, "Okay, Harry. Mummy needs your help." "I get it, mice mean pay attention to details. I got the message, I paid attention to the details. We're done, right? We don't need the message any longer. Please Harry, Mummy is so sick and tired of these mice. Can you help me? Can you make these damn mice run into the traps, whatever? Can you help me finally get rid of them? I promise, I'll pay attention to the little details from now on!"

Around Christmas or New Years I had killed a mouse in his room. It was one of the things that finally prompted me to seriously tackle cleaning up his room.

Attention to details.

In the month after he passed over last year, I had washed up a number of loads of his stuff, clothing and bedding, and it was stacked on his chair and all in his crib. I hadn't had the energy to do anything more with it. Well, the mice had been having a field day in his room / crib and there were lots of droppings there. So I had re-washed everything in his room, pulled out all the furniture and bleached the floor. But this time, I as well scrubbed his crib, scrubbed off dirty finger prints, ours and Harry's, scrubbed off long-dried up spit-up from the cracks and crevices. I finally put all the clean things away, put all of Harry's clean clothes back into his clothing cupboard. Cleaned up most everything in his room, there is just a pile of mementos on top of his clothes cupboard that I have to figure out how to save and bottles of left over medicine, that I am not sure what to do with.

I had left two traps set in his room, thought neither of them had any bait set in them.

And once his room was cleaned up I hadn't seen any more droppings upstairs. Until late February, or early March, when I had also seen them in our room one night!

Lydia, by the way, has insisted on keeping her bedroom door closed at all times since we first found the mice in the linen closet way back in November 2007. I have never, ever, seen a mouse in her room, nor have I ever found droppings in her room, anywhere. Not in her closet (I have thoroughly cleaned it out several times), not in any corner or under any pile of toys. Nowhere. Nada. Nothing.

So, back to March 22.

Monday March 23, I am not sure why, I decided to check the traps I had left set in Harry's room. I looked under his crib and low and behold. There was a newly-dead, big fat (possibly pregnant) mouse, dead in the trap under his crib. I yet again, bleached Harry's bedroom floor.

Okay, I thought, are you going to help me Harry? It seemed somehow like a message from Harry. To find a dead mouse under his crib, caught in a trap that didn't even have any bait set in it.

So, I decided to try again. Tuesday, I cleaned up the basement (in preparation for our trip, and concerned about spring flooding, I wanted to make sure that everything of any value in our basement was at least 6 inches off the floor). A few weeks ago I had noticed that the mice had gotten into a bag of grass seed, so I painstakingly swept up every last seed and made sure the basement was spotless. And set 4 more traps and a water trap.

Then I bought yet more wooden traps at the corner store across the street.

I had brought the electronic trap upstairs a few weeks ago, filled it with peanut butter. The mice were going crazy sniffing the peanut butter from the outside, as evidenced by the droppings by the end of the trap, but none of them were willing to go INTO the damn thing. Nonetheless, I refreshed the peanut butter in the electronic trap and set a wooden trap just by the end of it. Set three wooden traps in the kitchen and two in the mud room. I also decided to try another trick I had read about, tied a piece of nylon stocking to the bait area and put the peanut butter on that, supposed to give more surface area, mice are supposed to tug it and set off the traps.

Wednesday night, March 25th, three days after my plea of help to Angel Harry, I killed my first mouse at about 9:00 pm. I heard the trap snap in the kitchen. Wow. Cool. Five minutes later another trap went off. I swear to God, I killed five or six mice that night. Couldn't get any work done. Every time I sat back down at my desk in the dining room another trap snapped off and I had another mouse to dispose of. But not just in the wooden traps. I zapped three mice in the electronic zapper as well. I gave up trying to get any work done by 11:00 pm, had just settled down in bed, when I heard yet another 'snap' downstairs and there was another dead mouse.

Okay, this is interesting, I thought. Next night, same thing. I kid you not. I killed another five or six mice. I started a 'dead mouse' collection jar just outside our side door, nestled in the snow at the top of the stairs. At one point Thursday night, I heard two traps go off in rapid succession in the kitchen. I went in to check, damn. Two empty traps. One of the crafty ones. Then I noticed movement at the bottom of the kitchen cupboards. The mouse wasn't dead, but it had hurt its leg trying to get away when it had set off one of the traps. Thinking fast, I grabbed a Tupperware container and trapped the injured mouse underneath it. And went to bed. Hoping it would just be dead in the morning.

It wasn't. I had to drown it. Lydia, ever helpful, had see the overturned container in the kitchen - I had told her not to touch it, because there was a mouse under it - she suggested I get the big butcher's knife and cut off its head. Wow. Didn't know she had it in her.

Friday night I killed at least another mouse, maybe two. All in all, over three nights I killed somewhere between 11-14 mice. I lost count. Five or six were pretty small, babies really. Caught two big fat ones, Mommas maybe? And another batch of older, more crafty ones.

I swear Harry heard me and was helping me. Why else, after a year of trying, was I able to kill so many mice in such a short time? Maybe the nylon was making a difference? But why was the electronic trap working after lying dormant for many months?

That weekend, I cleaned up the floors through the house, yet again. On Sunday the 28th, Lydia and I left for France. I left three traps set in the kitchen, one in the dining room with the electronic trap, and two in the mud room. I figured if we still had mice, we'd see lots of droppings when we got home, after they had had three weeks of freedom to run wild around the house.

When we got back from France. Nothing. Not one dead mouse the whole time we were gone. But NO droppings either. Anywhere. Seriously. No droppings under any furniture, in the kitchen, dining room, mud room. Nowhere. Nothing.

I'm not 100% sure that the mice are really gone. But since getting back from France. I have not heard or seen a mouse. I have not seen any mouse droppings. I'll keep the traps set. But I really believe my little Angel Harry heard me and helped me out.

I am considering very carefully what I should ask him for next time!

Interestingly, Lydia has started keeping her bedroom door OPEN ever since we came home from France. She has always seemed to have a level of communication with Harry that I don't quite understand. She told me it's okay to keep her door open now.

Love,
Cynthia

p.s. for those of you who might be wondering, no mice do not cause Rhabdoid cancer. Yes, I wondered that two, and asked the doctors at one point, they reassured me, there is no way the mice caused Harry's cancer.

Friday, May 1, 2009

39 and Holding

Today is my 39th Birthday.

I have never worried about turning 40 before, but somehow after the year we have had, 40 feels like a huge milestone, both good and bad. But, I guess I have a whole year to worry about turning 40!

Last year, Harry just made it home from the hospital for my birthday - he had been in for a few days for a blood transfusion and a bout of febrile nutropenia (fancy word for fever due to very low white blood cell counts, one of the many fancy terms we learned last year), in his recovery phase from his third round of chemotherapy.

Gareth and Kathleen came by with a lovely chocolate cake to help us celebrate.

Lydia made me stay in bed an extra ten minutes this morning so she could put my presents on the dining room table for me, just like I do for her. She made me a lovely picture / card, which she even wrote "Happy Birthday Mummy" and signed it from her, Daddy and Harry. She also made me a paper bracelet. What a sweetie. What would I ever do without her, she brings such pure joy to our lives.

Henry has ordered me a cake this year, a first! Some family and friends will drop by this evening to join us for cake.

I know our angel Harry is going to be right here with us. Wishing me a happy birthday too.

Love,
Cynthia