Remembering Eric Today

Remembering Eric today - his smile, his sense of humour, his passion for learning and his kindness...

Please honour his memory today by Paying it Forward....

• Read a story to a child
• Donate blood
• Buy a coffee for the guy behind you in line at Timmy's or Starbucks
• Put a quarter in a meter, any meter, that’s about to expire
• Leave a copy of a really great book you’ve read in a cafe for someone else to enjoy
• Be nice to the customer service people who are trying to help you with your technical problem
• Bring a box of donuts to work or drop them off for your chemo nurses
• Teach a child something you wish you knew at that age
• Smile at someone who’s sad
• Inspire someone to be the best that they can be
• Join the bone marrow registry
• Give someone the benefit of the doubt
• Live for today and inspire someone else to as well....

Try it - I guarantee you'll feel better and somewhere out there....  Eric will be smiling!

Imagine all the people....  Living for today.... 

Remember Me..... and the times we laughed

Remember Me

To the living, I am gone

To the sorrowful, I will never return

To the angry, I was cheated

But, to the happy, I am at peace

And to the faithful, I have never left

I can not speak, but I can listen

I can not be seen, but I can be heard

So as you stand upon the shore
Gazing at the beautiful sea, remember me

As you look in awe at a mighty forest

And its grand majesty, remember me

Remember me in your hearts,

In your thoughts, and the memories of the

Times we loved, the times we cried, the

Battle I fought and the times we laughed

For if you always think of me, I will

Have never gone.

AUTHOR UNKNOWN

Happy Birthday Eric,

Love Mom

Eric's Legacy

These are the words that no one ever wants to write. I write this to remember Eric and share with all of you the gifts that he shared with our world. And as I write, I am aching that he didn’t have a chance to continue to share those gifts.

I like to think that it’s part of Eric’s legacy to inspire others to share some of these gifts and live our lives as he lived his own.

Love and Kindness…
This one is easy if you think about -- find your opportunity to extend an act of kindness or love on behalf of Eric. Take the first step -- Pay It Forward. Eric, I see you nodding.

Courage and Stamina….
Eric would tell you that he wasn’t courageous or brave – and stamina does wear thin. Because he had cancer, he just had to fight it. He would tell you that any of us would do the same….
What Eric showed us though, was how to face that type of adversity while being true to yourself, living your life in spite of chemo and blood transfusions and doctor’s appointments. What we saw as courage, bravery and stamina, Eric took for granted. He expected to stay in university, move into his own apartment, camp, play golf and go to hockey games. And he lived for today – he would want us to do the same. Live your life to the fullest .

Leadership and Hope…
Eric was fun to be around and he was optimistic. A smile and positive approach can’t help but inspire more hope. And he attracted the most wonderful friends - people who will now be lifelong friends because of Eric.

Eric wasn’t afraid to make the kind of tough decisions that none of us should have to make. He was thoughtful, he educated himself and then he trusted in his decision. Think of Eric and be true to yourself and your integrity. Actions speak louder than words.

Best Friends….
Eric, you gave me a very special gift when you introduced me to Morgan. Welcoming Morgan into our family was easy - I think the first time I met her she was sitting on the floor playing with one of the dogs! We’re kindred spirits and Eric, well – you know that Morgan and I need each other -- and you made sure that would happen.

Eric, I miss you more than I could ever imagine and endlessly more than I can ever describe in words. Last week we talked about my Mom – you wanted to know more about her and how it felt to lose her. I didn’t know then that I was introducing you two and that you were helping me to understand. Mom has been gone for over thirty years but in the last 2 weeks she has been closer to me than ever. Now I know why.

Rev Jim told us that we could expect to see you in little things and he’s right. How would a florist in the US or my GIO team know that your favorite houseplant is a Peace Lily? Yesterday the most beautiful Peace Lily with succulent dark green leaves and three white flowers arrived -- Coincidence? Nah.

This morning as I woke up and faced the horrid reality yet again, I wanted to curl up and make it all go away. Then an itsy bitsy spider started to descend from the ceiling fan and he was aiming right for me! That made me jump higher and faster than you can imagine (yes I can hear you laughing!). And I didn’t kill that spider by the way… I gave him a nudge with my book and sent him back to the ceiling fan. I’ll take him outside for you later.

Eric you are my hero. Love you forever. Fly with angels.

Love, Mom
August 11, 2009

Heartbroken

He taught us love and kindness, courage and stamina, leadership and hope. He taught us to laugh and cry and how to be a best friend. Wise beyond his years, we could all try to be just a little bit more like Eric - that would make our world a better place.

This is just so wrong.

Eric you are my hero. Love you forever. Fly with angels.

Eric Thomas MacLeod Brule
January 16, 1987 - August 9, 2009


Arrangements being cared for the the Hulse Playfair and McGarry West Chapel, 150 Woodroffe Ave, Ottawa, ON
Visiting Wednesday August 12/09 from 6pm - 9pm
Funeral in the chapel on Thursday August 13/09 at 11am

Devastating Day

Eric is currently in ICU having a central line inserted and prepping for kidney dialysis. His kidneys shut down (we don't know why) and dialysis is his only option. We are praying that this is still reversible.

I will update when we have more information.

Prayers please.

Up and Down - In and Out

This ATG serum sickness is just damn annoying. It seems to be cyclical and just when you think it's gone, it's back. Fever's appear out of nowhere and the aching joints have Eric walking like a lil ole man some days.

Because of his transplant history and suppressed immune system, every fever means IV antibiotics and a hospital stay. He was admitted Sunday, out on Monday and admitted again yesterday. Because he is back in the BMT daycare program, it's a quick and easy admit at least. I think he will stay in a few more days this time.... but who knows - the serum sickness disappears as quickly as it appears.

Good To See CNN Helping Raise Awareness

The number one reason that people do not join the bone marrow registry is that they don't know about it.



It's great to see one of the media heavyweights involved in promoting the need for folks to join!

Wow!

Wow! And I don't mean World of Warcraft wow....

For anyone who has read this blog for a while, you'll remember that we have tried to ignore blood counts. All of us found that we focused too much on those numbers. Poor numbers or a slight drop could ruin an otherwise fine day.

But today's numbers are astonishing!

Hgb > 119 (up from 105 after a transfusion last week and it was regularly dropping to 60-70 when all this started a month ago)
WBC > 3.3 (it was below 1.0 just 10 days ago)
Platelets > 31 (up from 12 just 10 days ago)

Obviously we are thrilled to see this graft back in action. Eric will continue to go in daily for blood tests and fluids. It's a fairly quick visit and should be able to be scheduled around class. I am not sure that there is a definitive answer to what was wrong - but we are liking the results of treatment!

A Short Stay!

Hurray! Eric was 'sprung' yesterday as his fever was gone and he had no signs of infection. The fever he did have combined with the rash and joint pains are classic signs of serum sickness induced by the ATG. Prednisone daily will help diminish those symptoms. Until we are sure what's going on (or not), Eric will drop into the hospital for a daily blood draw and fluid.

Hopefully, that's it for side effects and now we wait for a response from the ATG treatment - sounds like that takes a while (3-9 months?) - but Eric's counts have been somewhat better this week. And that's encouraging and we'll take it.

In other news, Dexter was a brat this weekend at shows in Kingston - he's SO full of himself... Today's judge, bless his heart, saw past the naughty teenage boy and gave him the point. Step One to his championship.

Argh...

Eric spiked a fever last night. For anyone who is post transplant or is immunosuppressed, a fever always means the hospital. He's on two types of round the clock antibiotics to make sure that any infection that may be lurking does not get a chance to grab hold. Usually we never find out what the infection even was or if it was an infection.

Eric's other symptoms - sore joints and a rash on his hands and feet actually point to serum sickness from the ATG. This is a relatively common side effect and the treatment is prednisone. So he started on that too.

Something is working because his fever has dropped considerably, his pulse rate is down and his blood pressure is back up to a normal range.

So he's settled in for a while - no idea how long he will be in hospital. We are just thankful that he is feeling better.

Done and Back to Class

Five days of ATG done. While that's not the end of treatment, it's the end of the hospital stay and Eric is back in class today. Lucky guy escapes the hospital to face a math midterm.....

He has blood tests mid week and will get blood if needed and then a follow up appointment on Friday.

Big shout out to all my colleagues at Convergys who organized a very successful first blood donor clinic last week. Thank you! And they are already busy planning the next one for the end of September. Way to go donors and organizers!

Yet Again!

Another good day. Yesterday and hopefully today, Eric was able to finish the infusion in time to go home for the night - that makes things much better.

And we got a nice surprise today to see his white count inch up a bit. We'll see if it keeps that trend or if it was a oddity. From reading about this treatment, we would not expect to see blood counts recover quickly - it's more of a slow reaction. But - Eric doesn't follow the rules!

So Much Better Today!

Whew, the second day of ATG has been uneventful. And he's back to requesting Harvey's for lunch!

ATG - Yuck....

Eric had an allergic reaction to the first dose of ATG. While not unexpected, it's always panicky. The stopped the drip for a while until symptoms subsided and his breathing was normal again. Although he's still feverish and having some chills, they are under control. And he has the full attention of all the nursing staff now.

Hopefully, it's only the first day that the reaction will leave him feeling so miserable.

Membership Has It's Privileges?

One benefit of being part of the frequent flyer program in the BMT unit (or part of the cool kids club as one of my favorite friends calls it...) is that you get speedy service. Eric got a call this morning and was formally admitted today (although he is back home for the evening). Tomorrow he will get his PICC line inserted, get blood to top him up and start ATG. When he got there the 'TV Guy' was already installing his TV and told him that he had 9 days of credit from his last stay (you may remember that TV is a must have when you are hooked up to an IV all day). Cor says they are all afraid of me, but I think they all just really like Eric - so they make sure he gets special attention.

So, off we go -- fully expecting that ATG will solve this nuisance of a problem. Eric, you're a true hero. And that is not even Mom's bias showing through....

A Plan

While the plan is still being pulled together, Eric will be getting ATG as soon as they can arrange for a new PICC line to be inserted and a hospital bed opens up.

ATG is given over 4-5 days in 12 hour infusions. The hope is that ATG will kill off the T Lymphocytes which seem to be attacking his blood cells. I understand that it takes some time and he will continue to get transfusions to keep his hemoglobin and platelets out of the critical range.

This marrow failure is acting like Aplastic Anemia - his tests and symptoms all point to Aplastic Anemia. But the original Hodgkins and subsequent transplants make a definitive diagnosis hazy....


From the Aplastic Anemia and MDS International Foundation

In patients with aplastic anemia, there are not
enough stem cells in the bone marrow to produce a
sufficient quantity of blood cells. The generally
accepted thinking about aplastic anemia is that the
patient’s immune system is reacting against the bone
marrow, interfering with its ability to make blood
cells. Thus, aplastic anemia is an autoimmune disease
with similar pathophysiology (i.e., changes in the
body) to diseases like diabetes, ulcerative colitis, and
multiple sclerosis. Stem cells are no longer being
replaced and the remaining stem cells are working
less effectively, so the levels of red cells, white cells
and platelets begin to drop.

We just don't know how this relates to Hodgkins. Was the Aplastic Anemia caused by the Hodgkins or all the chemo? Or has the AA been around for a while and that allowed the Hodgkins to get out of control? Is this caused by a conflict between Eric's immune system and his donor cells? We just don't know and may never know.

By the way, the other treatment for this type of bone marrow failure is another transplant and that donor search continues. You know the drill. Please sign up for the bone marrow registry and ask at least one friend to join as well.

Obviously we are discouraged. Eric has just gotten back to class and is eager to stay on track, but already he is having to miss class -- very discouraging.

All those prayers and positive vibes are most appreciated.

Mind Boggling....

Not alot to update... Eric still has very low counts and had a transfusion today to boost those red cells. We met with Dr H yesterday and there is really no clear answer as to why this graft appears to be failing. Just as there was no answer last fall. There are still some test results pending, but it's doubtful that any of them will provide significant new information.

The results from testing so far combined with Eric's history just provide a perplexing puzzle. And the treatment options are just as perplexing. This is not just new territory for us, it's new territory for our entire team and those with whom they consult. And it's serious territory to be in.

A couple of ideas -- because this 'syndrome' is behaving like aplastic anemia, there is consideration to treat for aplastic anemia. One option that carries less risk than a third transplant is to administer ATG. ATG targets T-lymphocytes—the cells that are responsible for destroying or suppressing stem cells. Eric had ATG prior to his first transplant and had few issues with it. Obviously, if there is a chance that ATG can provide some relief, it is a viable option while searching for a new donor.

Yes, there is also a search on for a new donor. There is a slight possibility that there is a critical incompatibility between Eric's cells and the donor cells but, in addition, in Canada a donor is only allowed to donate marrow twice. So if another transplant is to happen, it will be with a new donor. The thought of three transplants in a year is indeed, mind boggling.

Is there any good news? Eric is otherwise surprisingly healthy and all this testing has turned up no sign of Hodgkins or any other blood cancer. Whew. The fungal lung infection that posed a very serious risk last winter is gone. For any transplant to take place, Eric has to stay in the good health he currently maintains.

Finally, we need your help. Please please please join the bone marrow registry. If you have already joined (thank you!) or are unable to join yourself, please ask your friends and family to join. It is truly simple. For you it is only a cheek swab - for Eric and many others.... it's their life.


www.onematch.ca

www.marrow.org


Thank you

Nothing New

Nothing new - and we hope that is good news. Since the transfusion (3 units) last Thursday, Eric has felt good and has not had another transfusion. For comparison, when he lost the first graft, his hemoglobin dropped about 10 pts daily and he had transfusions every 2-3 days. We know that his graft has never been 'robust' and expect that his counts will always be lower than normal. Maybe we also need to expect that he will have these times that the counts drop precariously low?

Initial results of his bone marrow biopsy show empty or hypocellular marrow. Eric asks a good question - what do they compare his marrow to? It's compared to normal healthy marrow. Eric has not had normal healthy marrow for the last 3 years, so we don't really know if the current 'empty' marrow is any worse than 2 months or 2 years ago... As we all know, his case is unusual, unique and more detailed testing is needed before we have any answers that would lead to treatment discussions.

It's always something...

BTW, during this holiday season, blood supplies are always low. Please donate if you can.

Questions..... No Answers....

Eric's blood counts have taken a downward turn again...

He had a bone marrow biopsy today and extensive testing has been ordered on the aspirate and biopsy sample. Cytogenetics and chimerism testing is lengthy so we we don't expect to have answers for a while. In the meantime, we're monitoring counts closely and transfusing as needed.

In the good news column, Eric feels good and fully intends to continue as usual and wait out this, what we hope is, 'a blip'.

Six Months

Eric is 6 month post transplant (transplant #2 that is) and he's doing great. Lately his challenges have been pretty normal day in and day out problems - rainy camping trips, a burnt out video card in his PC, classes that are a bit mundane. We are constantly thankful that our lives are returning to normal (whatever that is...).

I will continue to update the blog on occasion, but if you don't see updates, please assume that all is well and that we are busy living our lives!