Eric's Updates: Allogeneic Transplant for Hodgkins

Remembering Eric Today

2011-08-09T07:39:00.000-04:00

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

2010-01-16T07:54:00.000-05:00

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

2009-08-18T09:15:00.019-04:00

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

2009-08-09T10:04:00.005-04:00

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

2009-08-08T19:22:00.002-04:00

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

2009-08-05T08:16:00.002-04:00

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

2009-08-02T10:32:00.004-04:00

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!

2009-07-27T20:08:00.005-04:00

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!

2009-07-26T13:06:00.010-04:00

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...

2009-07-23T21:23:00.002-04:00

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

2009-07-21T09:02:00.002-04:00

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!

2009-07-19T22:51:00.002-04:00

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!

2009-07-17T20:49:00.002-04:00

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

ATG - Yuck....

2009-07-16T21:29:00.004-04:00

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?

2009-07-15T19:39:00.003-04:00

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

2009-07-14T20:47:00.005-04:00

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....

2009-07-08T19:54:00.011-04:00

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

2009-07-03T09:02:00.004-04:00

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....

2009-06-26T16:53:00.002-04:00

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

2009-06-09T09:51:00.004-04:00

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!

Catching Up

2009-05-23T12:19:00.011-04:00

Young adults in cancer treatment end up having alot of catching up to do. Whether it's work, school, travel or friends - too much ends up having to slow down during treatment. That's why it's so amazing to read Adrienne's story. Adrienne has had Hodgkins for most of her life and all of her teenage and young adult years. Yet she graduated from college last week! Kudos Adrienne!

Eric's Catching Up

Eric has been trying to schedule his driver's test since he was diagnosed almost 3 years ago. I don't know how many times it was scheduled, but each time, he ended up in the hospital. You can bet that we had all become very leery about even thinking of scheduling that road test again. Anyway, last week he finally got to take his road test and passed it. Check one more 'catch up' item off that list! Getting back to school has been great for Eric - and I know that I am much happier to hear how his criminology test went than how some medical test went.

And finally, thanks to Cor and all the kids for my great birthday present. These scans don't do the family photos justice -- the actual prints are amazing.

All of us ...

Shelley and Dave...

Eric, Shelley and Zach

Have a Party... Donate the Empties.... Feel Good About It!

2009-05-14T15:48:00.006-04:00

The Beer Store is proud to support the Leukemia & Lymphoma Society of Canada, the charity of choice for our union, UFCW Local 12R24. Their mission is to eliminate leukemia, lymphoma (Hodgkin and non-Hodgkin) and myeloma by funding research and promoting public understanding of the these blood cancers.

On the weekend of May 23 and 24, customers will be invited to donate all or a portion of their empty bottle refund to the Society. 100% of the funds they contribute will go directly to the charity.

In 2008, this initiative was proud to raise $650,000 to support the Society in its fight against blood cancers.

Enjoying Life

2009-05-10T08:29:00.005-04:00

Moved into new apartment with cute girlfriend, started summer semester, practicing swing at driving range, golfing, camping... That's Eric's life 5 months post transplant. We are amazed and grateful and enjoying life.

Sometimes this past year seems completely surreal. An anonymous donor stepped up and saved Eric's life - twice. A skillful and caring BMT team never stopped trying and never let us down. Over a hundred days in the hospital, countless blood and platelet transfusions (thank you to all those donors too), endless blood draws, chemo, chemo and more chemo.... And we have our miracle.

A great story in today's Ottawa Sun relates how another anonymous group of strangers makes sure that bone marrow transplants work.

Have Marrow, Will Travel

I wonder who made sure that Eric's new marrow arrived safe and sound?

Happy Mother's Day to all the Moms out there. Enjoy every day - make it all count!

Totally Random....

2009-05-03T16:05:00.009-04:00

Have been watching this webcam and thought others might like the diversion as well....

Canada Goose nest near Edmonton

Apparently the eggs are expected to hatch this week. Earlier today, she spent some time adjusting and turning the eggs...

Goodbye PICC!!!

2009-04-21T19:52:00.005-04:00

There are bits and pieces of this journey that became tolerable only because the alternative was intolerable.

Since January 2008, Eric has had a PICC line in his arm. It was a Godsend for hundreds of blood draws, countless transfusions, endless bags of fluid and many rounds of chemo. It saved his veins and prevented complications.

But, it meant that Eric had to wrap and tape his arm before every shower, he has not been able to swim, lift or exercise. In the summer, long sleeves don't cover it and people stare - Eric stares back.

That PICC got pulled out today and while it truly is miniscule in the context of the last 18 months, it is a huge victory for Eric.

So, we celebrate another milestone. Today, I am grateful again for our donor, our medical team and the Canadian health care system.

I just read this article posted by Duane on his blog and thought, there but for the grace of God go I...... With Son in Remission, Family Looks for Coverage . I realize that universal medical care is a topic that can cause heated debate amongst some of my American friends. But I am grateful that I can look around my office or neighbourhood and know that everyone is able to get the same remarkable medical care that Eric receives.

And because you've asked.... family portraits turned out awesome! But you will have to wait a bit to see them.

No News is Good News!

2009-04-14T19:04:00.004-04:00

Not alot to talk about - Eric has moved to visiting the BMT clinic every 2 weeks now - I don't think we have gone this long without seeing a doctor since last June. April did call him to say she wanted to see a blood test at some point to make sure tacro levels remain stable - but that's just a blood test! Other than that, we are down to waiting for eyebrows to grow in and the end of a runny nose (probably no nose hair - eww - things you didn't want to know!).

Eric surprised me last week with the news that he has signed up for the summer semester at university. Of course we are thrilled that he feels well enough to go back to school. When you have been tied to doctors and hospital visits for as long as Eric has, even school in summer sounds like a welcome break.

Family portrait scheduled for next weekend so maybe I'll have some cool pics to share then.

In the meantime, best vibes, positive thoughts and prayers to all fighting this crappy disease. Hoping for great scans for Adrienne, continued good chemo response to Bekah and a special shout out for a much needed dose of good news to Jake, Jessica and Marsha. Too many people fighting this 'good cancer' for way too long.....

Mmm Mmm Good....

2009-04-04T08:58:00.004-04:00

What a great feeling to see an excited doctor instead of those looks of concern...

Friday's appointment brought more good news with all blood counts increasing, tacro levels stable and potassium finally within a normal range. The balancing act is working! The change in tacro dosage seems to have allowed this graft to take off and do what we have been waiting for! Eric is now back to being a 'normal' Allo BMT patient. After the roller coaster of the last 8 months - that is fabulous news for us.

Morgan - hope you had a fantastic birthday party last night! You deserve it! (and you'll have to give me the goods on Eric's party planning skills...)

Stringing Together Good Weeks

2009-04-01T20:07:00.003-04:00

Not that long ago, I was writing about having 2 good days in a row. Now that we are seeing good WEEKS in a row, it seems unbelievable. So what is a good week like? Eric still has low blood counts, but they are stable and slowly rising. He has not had Neupogen or Procrit to boost his counts and his last transfusion was about a month ago. A recent chimerism test (looking at the DNA of his blood) shows that he is 96% donor. He has a good appetite and can pretty much do whatever he wants. It feels like nothing short of a miracle considering how he sick he was through the winter.

Interesting situation when Eric went to pick up a prescription on Wednesday. He is covered by Ontario Drug Benefits (comes with ODSP and homecare). Some of his drugs are very expensive (this particular drug is $3000.00/month). Those spendy prescriptions do get an extra layer of approval and that has never been a problem. However, there were delays at the pharmacy on Wednesday. Turns out that the Ontario government (Ontario Drug Benefits) are a little tardy paying their bills! They had not paid their bill with the pharmacy for the last 2 prescriptions so there was a balance of $6000.00 owing in spite of the extra approvals. WOW -- no wonder there are pharmacies who are wary of dealing with Ontario Drug Benefits.

So, I guess they used this latest prescription as a bit of leverage to ensure payment. They are classy though and to ensure that Eric wasn't impacted, they delivered the prescription to his door once they had dealt with the government and it's lagging payments.

And in other news -- Dexter... He just keeps growing! Nothing is safe. Now that the counters need to be cleared (to make sure HE doesn't clear them), he has learned to take things OUT OF THE KITCHEN SINK! And if you notice we frequently wear mismatched socks... well, I refuse to buy more until he stops eating them. Sure glad sandal weather is almost here.

Please Join The Bone Marrow Registry....

2009-03-27T20:00:00.003-04:00

I just came across the heartbreaking story of six-year old Jasmina (click the image above), who is searching desperately for a suitable donor to cure her of a very aggressive form of leukemia. Learn how you can help her and so many others in need of a transplant here. Become a donor.

A generous stranger saved Eric's life. Imagine being able to do that..... Just by joining a registry.

All Is Well - And We Love It!

2009-03-19T08:01:00.003-04:00

Just a quick update to let you all know that all is well.

Eric is having a good week and even Dr B commented this week that he's looking better. Eric is naturally pale, so those who don't know him ALWAYS think his hemoglobin is low. He had a new home care nurse this week (home care comes in weekly to change his picc line dressing) who really didn't get it - insisted that he had to get his blood checked. Eric just rolls his eyes. He knows when he needs blood before any blood test tells us that. Morgan and I can tell by the colour of his lips when he needs blood.

Other than basic blood counts, the only other thing that is getting alot of attention is high potassium. This is due to the immunosuppressant he takes. When the potassium goes high, Eric is prescribed a yucky powder that is mixed with water and will bind excess potassium in his system. He told Cor that it tastes like drywall.... No, I have no idea how he knows what drywall tastes like....

Back to enjoying a nice normal, healthy, week. Ahhhh.....

100 Days and many more

2009-03-14T08:33:00.002-04:00

It's Day +100. In the BMT world it's considered a milestone.

Eric's milestone this week was getting a haircut! First one he's needed in almost a year... Other than that we are trying to ignore blood counts and focus on living life and feeling good.

For anyone who has dieted you know how the scale can dictate how you you feel that day? Even if everything is wonderful, a pound up can ruin your day... Blood counts can do the same thing. We have an entire medical team who can watch blood counts, so we are trying to let them do that. It's hard. When you life depends on this working, it's overwhelming.

But what's the point of getting through a transplant unless you are going to enjoy the life you have been given? So that's the focus - enjoy the day.

Eric - Happy Day 100! Sounds like an excuse to celebrate!

30% Off at Gap, Old Navy and Banana Republic

2009-03-07T15:31:00.005-05:00

Click Here for 30% off Coupon for Gap, Banana Republic and Old Navy

Want to shop and support the Leukemia & Lymphoma Society? Get 30% with this coupon and 5% will be donated to LLS. And the best news - this coupon is good in Canada and the US!

Come Back Next Week!

2009-03-03T20:09:00.004-05:00

Yup - as long as Eric keeps feeling good, it's a whole week until we have to head back for another appointment at the hospital. Having been in or driving to the hospital most days this year, this break is truly appreciated. Not the fact that we don't have to get there, but the fact that Eric is well enough and stable enough to be away from the place for that long.

His blood counts have stablized and are on their way up - the graft may be weak, but it's there and sticking. The scan did not yield any new results - we'll just continue to watch those nodes to see if they change. Funny how that is now GOOD NEWS. At one time we would be devastated to have unanswered questions. Now we just enjoy today and the fact that no news is really good news. There is still a long way to go and we're certainly not out of the woods.

But after a few long, very stressful weeks, the relief is sweet.

More Good Days

2009-02-28T07:08:00.004-05:00

Winter birthdays abound in our family. December is Shelley, January is Eric (his original birthday, he also has August and December now too), February is Dave (Shelley's husband), March is Zach and April is Morgan. So tonight we are going out for our big family birthday dinner.

Eric continues to truck along - we remain cautiously optomistic that the graft is settling down and holding tight. He is off (meaning no hospital visits) now until Tuesday when we return for some additional testing and expect to get results of yesterday's gallium scan. Honestly, that scan is mainly for baseline purposes. There are no plans currently for a biopsy or treatment. If there is Hodgkins in those nodes, it is very slow growing and we hope that a graft vs lymphoma effect will kick in.

A Day At a Time

2009-02-25T07:10:00.005-05:00

While Eric's blood counts are low, they seem to have stabilized. He hasn't needed blood products for over a week and we are cautiously optimistic that the graft is holding.

The next step is to understand what is left of the Hodge. The last couple of CT scans do show 2 nodes that have increased in size since last summer. While the increase is in terms of millimeters, we do need to be vigilant and determine what's up with these nodes now. They are not easily accessible for a biopsy and no one is keen on surgery while Eric's platelets are low. He will have a gallium scan (PET scans are approved for Hodgkins in Ontario but not in the BMT context - huh???) on Friday that may give us more insight. Basically, it's important to determine if there is still any Hodgkins hanging around while the disease burden is low.

If Dr F (Eric's hematologist) and Dr H decide that this is probably the Hodge, they will try to 'turn up the volume' on the graft and continue to monitor the nodes. The hope is that the donor's immune system will see the cancerous cells as foreign and kill them off.

It sounds easy doesn't it?

An allo transplant comes with a host of complications to be managed. For instance we know that Eric has had a fungal infection in his lungs and liver (fungus in either of these organs is fatal to many). It's under control and close to being gone. But until it is totally resolved, using steroids or reducing immunosuppressants to push this graft is extremely risky. So we wait and monitor. We have faith that Eric's body is strong and the graft is holding. We work with our doctors and ask never-ending questions. Our doctors continue to puzzle Eric's medical mysteries and work with doctors in BMT clinics around the world.

And today is a good day.

Rollercoaster

2009-02-23T14:19:00.004-05:00

It's a rollercoaster - blood counts up on Saturday, dropped Sunday and rallied again today. At least the bouncing blood counts tell us that there is action in the marrow.

From Eric's history, we still assume that his marrow is not the best. Prior to the original transplant, his marrow could not create enough stem cells to move forward with an auto transplant. The doctors assume that this problem continues to plague him.

From my layman's perspective, it's like the marrow used up all it's reserve in boosting his WBC when he had the recent virus. Now everything is playing catch up and this new graft is again getting itself coordinated to produce enough cells on a regular basis. I have no facts to back this up - I just watch symptoms and test results and try to put the puzzle pieces together.

2009-02-21T10:00:00.002-05:00

Counts up a smidge this AM:

HgB from 96 > 97
Platelets from 20 > 21
WBC from 1.6> 1.7
Neutrophils from .9 > 1.0

More changes to immunosuppressants due to the risk of a negative reaction between Tacrolimus and Voraconazole. Sheesh. It's always something.

BTW, Eric is outpatient and feeling okay. We head in to the BMT clinic in the mornings for blood work and fluids - other than that, he's doing his regular thing - putting in hours on the Wii and XBOX, being a Sens fan and chauffeuring Morgan around town...

Stressful Times

2009-02-21T06:43:00.002-05:00

Eric's counts have been dropping this week...
Hoping that it is from the virus he had...
Adjusting immunosuppressants...

Prayers and positive thought please. We really need this to work.

Happy Valentine's Day

2009-02-13T17:34:00.006-05:00

Blood Counts: Good!
Spots on CT Scan: Smaller! (and now assumed to be fungal and under control)
Weight: Up!
Colonoscopy: Inconclusive -- that means good to us!

Happy Valentine's Day Everyone!

Thank you

2009-02-10T18:30:00.003-05:00

"A Pair of Shoes" was a poem I have come across a few times. Yesterday, I found it again, tucked at the bottom of Tyler's blog and I wanted to share it with all the Moms I know - especially for those who are wearing shoes like mine - or the similarly styled 'caregiver shoes'. You (and again, you all know who you are) have become a very special support team for me.

Eric continues to be my hero - he is relieved to have that damn colonoscopy over with. Now the team needs to look at all the pieces and figure out what's up. In the meantime, he's feeling pretty good but as shocked as all of us to learn about Tyler.

A Pair of Shoes

2009-02-09T19:26:00.001-05:00

With thanks to my friends- especially the other Moms - you know who you are - who ask me about my shoes.... And with special thoughts for Tyler's Mom.

"A Pair of Shoes"
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some woman are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
~Author unknown

Never a Dull Moment

2009-02-05T18:53:00.003-05:00

Lots going on this week.... Eric had a CT Scan today. Hopefully this scan will give us more information on the spots on his liver and lung that developed during his transplant. Although all have been biopsied, nothing definitive has ever showed up. If the spots are smaller or the same, we can assume that there was an infection that is now under control (a fungal infection has been suspected for some time and Eric has been treated for this on an ongoing basis). If the spots are larger, then the docs need to figure out how to do another biopsy that would give us the definitive answer that is required. All expect that this would be invasive surgery.

There is some urgency to determine what these spots are. Eric has symptoms of GvHD that would be treated with steroids. He can't have steroids if there is any risk of active remaining infection.

Yes, the spots could be cancer. If so, the GvHD might be a good thing, in that it is expected that this response may indicate that the graft is also attacking the cancer cells. At the same time, the GvHD has to be controlled. Indeed, it's all a delicate balance...

Confused yet? Wait, there is more.

Eric also has an odd rash that infectious disease, hematology, BMT and dermatology have not been able to identify. They are planning to biopsy that as well. Again, it could be viral, bacterial or even Hodgkins.

So, while a large team sorts out these details, Eric is going into the BMT clinic daily for blood counts, fluids, assessments and tests. For long-time readers, you may remember that we are hitting the time that the graft was lost in Transplant 1. With that in the back of our minds, the close overview and scrutiny right now is very much appreciated. This graft is looking stronger - everyone knows that having it stick is the number one goal.

Dexter - the true supporter he is.... has decided to have sympathy diarrhea all week. Poor puppy is feeling much better today and is back to driving us crazy. Interestingly enough, he did throw up a sock at one point.... hmmmm.... I wonder?

Already 52 Days

2009-01-25T09:53:00.002-05:00

And all is well. Eric is loving being at home and feeling better. Although he still has a ways to go, he is eating more and feeling well enough to be out with friends, going to hockey games and beating all of us at Mario Kart Wii....

He's on the regular post transplant drugs -- antibiotics, antifungals, antivirals and Tacro - the anti rejection drug. All that stuff in his system can be hard on liver enzymes so the home care nurse drops by daily and hooks him up to IV fluids for a couple of hours.

His blood counts bounce around a bit -- kind of like gas prices. They drop a point or two for a few days then shoot up for no reason. The drops are nerve-wracking. The sudden jumps are a relief. Doing blood counts twice a week rather than daily is giving all of us a welcome break from the breath-holding while we wait for blood counts to come back.

And we had another Christmas dinner this weekend! Yum! Turkey and stuffing and all that good stuff - what a difference a month can make.

Happy Birthday Eric!

2009-01-16T07:01:00.006-05:00

Happy 22nd Birthday Eric! Make it a great day! We'll go out for an early dinner tonight and then Eric and Morgan have plans with friends. It's just so great that he is out of the hospital and is feeling well enough to make plans to celebrate! This is what it's all about.

Eric's doing well. He still goes in daily for IV antibiotics and fluid. His counts fluctuate alot and that drives us crazy. As much as we know this is normal, we have been here before. Expecting just a few more days of daily visits. When this course of antibiotics is over, they will likely move him to weekly visits. If he still needs hydration (to flush the drugs through and help keep creatine counts down), he can get that at home.

Today we are celebrating.

UPDATE! UPDATE! UPDATE!

Counts are up today and antibiotics are done! He is discharged from Outpatient BMT and will move to weekly appointments! What a great BDay present!

Home!

2009-01-08T18:45:00.003-05:00

The goal was to have Eric home for his birthday - January 16 -- he beat that goal by more than a week!

He'll go into the hospital daily for blood work and antibiotics, but he's home sleeping in his own bed and eating what he wants when he wants it.

I think we've been smiling all day.

Day 33

2009-01-06T21:54:00.002-05:00

2009 is starting out well. Eric looks and feels quite a bit better. The abscess on his liver seems to have responded very well to the antibiotics. The pain is gone and Eric is up and around.

His counts fluctuate (which is normal). The rapid rise in his WBCs was in response to the liver infection and they have dropped back down. His hemoglobin and platelets are rising slowly and steadily.

He's started to eat a bit and they are taking him off TPN during the day. I hope that less TPN will stimulate a bit of an appetite. Personally, I think he needs Mom's cooking...

And Dr H has actually mentioned going home! We are hoping that Eric will be home for his 22nd birthday (Jan 16). Having spent both his birthday and Christmas in the hospital in 2008, this seems like a great goal.

Still lots of twists, turns and bumps in the road ahead but we are getting better at accepting those and working through it all. Need all your prayers, positive thoughts and cheerleading to get him home and settled. Eric? Well I think he is just thinking of all the new XBox games released since he was admitted to hospital!

Day +29

2009-01-02T14:44:00.002-05:00

Blood counts continue to rise - his WBC is actually in the low normal range at 3.5! After 2 months with a .1 WBC, this is nothing short of a miracle. Platelets and HgB have risen the last two days without transfusion -- that hasn't happened since early October.

Those WBCs are being put to work (and this is probably one reason they are multiplying so quickly) on the abscess. They are having a look today via ultrasound and they may decide to drain it. With higher counts, draining is an option. We expect it would be similar to the procedure he had last winter to drain the perianal abscess. That was managed laparoscopically. We'll know more once the specialist has a look at the ultrasound. I wish we had kept a count of the number of doctors who have been involved in Eric's transplants and ongoing care. As well as the BMT and Lymphoma specialists, we have been fortunate to have a wide range of specialists consult on every issue that has arisen. We are indeed lucky to have access to the healthcare we do.

Looking at a better 2009

2008-12-31T20:17:00.003-05:00

It has been two steps forward and one step back lately (sometimes even one step forward and two steps back....).

In the good news column, Eric's blood counts are rising dramatically now. This is a good sign for him.

In the not good news column, the pain in his side turned out to be a couple of tiny abscesses on his liver. While not uncommon following a transplant, he didn't need this new bump in the road. It's causing pain and is just one more complication. Fortunately, this type of abscess will respond to a specific antibiotic. And with recovering white counts, he can come off some of the other prophalactic antibiotics.

So it looks like he'll be in the hospital a while longer. He is still not eating so he needs to be on TPN, he needs IV antibiotics and he needs to be inpatient for pain control.

He's been down lately - certainly understandable. He does have his internet access back again (it's a pilot program in the hospital and I guess there is not a process in place to fix it when it doesn't work - took a while to get it back on). He does read his email and blog comments even if he can't always respond. We all appreciate the kind words, prayers and good thoughts. Thank you.

Day 23

2008-12-27T12:43:00.004-05:00

Eric's WBC is still rising slowly - but it is going in the right direction. He's had a few minor issues over the last few days - his PICC line had to be re-adjusted after migrating and coiling up near his heart. This meant that he had to have a traditional IV for his antibiotics etc and his TPN was discontinued for a bit. A final adjustment late yesterday and subsequent xray showed that the line is back where it should be.

He's had a sore belly and will have a CT scan later today to see if anything shows up. Pain meds are keeping any pain under control. We do need to remind him that there are no medals for putting up with pain and that he really will get better quicker when he is 'feelin no pain'.

He's still not eating much of anything. Solid foods seem to upset his stomach. He does drink juices and Ensure or Boost. We'll bring in a Booster Juice later today for a bit of a change.

We had a nice Christmas although very different from other years. We took turns visiting Eric to keep him company and that worked well. We'll definitely plan on another turkey dinner when Eric feels better!

Dexter is keeping us smiling! He's had a steady stream of visitors lately and loves every minute of it. He's just fit into the family wonderfully and is just what we all needed to make us laugh and give us 'Dexter' stories. Morgan and her family came for a visit yesterday and he has definitely added her to his favorite people list. Shelley and Dave were home for Christmas and brought their cat Helix -- let's just say that Dexter has NOT added Helix to his fave lists!

Christmas Wishes....

2008-12-24T19:50:00.006-05:00

It's a special time of the year when many of us have the opportunity to sit back and appreciate our families and friends and we often take time to reflect on the past year.

My first impression of 2008 is that I will be glad to leave it behind! Then I think of the generosity, kindness and warmth that we have seen while Eric fights this beast called Hodgkins. First and foremost, we are incredibly grateful to a kind stranger who has willingly donated bone marrow to Eric twice. This person is truly special. S/he has given this gift of life willingly and has no expectations of anything in return. Likewise, there are hundreds of strangers who have donated blood and platelets - each of you who has donated blood has given Eric or someone like him a chance to keep fighting. These are gifts like no other and they make the presents wrapped and waiting under the tree pale in comparison. Thank you.

I had only one wish for this Christmas. I want Eric to be healthy - I want this transplant to work. Today his white blood count rose! A WBC of 0.2 is like a miracle. While still a dangerously low white count.... this is twice what he has had for the last couple of months. Finally - a sign of engraftment beginning.

May all of you have a wonderfully peaceful holiday season and a HEALTHY and happy 2009.

Merry Christmas to all... and to all a good night.

Day +18

2008-12-23T07:39:00.003-05:00

These feel like long days.

There is some increase in neutrophils which is very good news - but it all feels very slow. I think we are all impatient and exhausted.

Physically, Eric is doing what they doctors expect. While they continue to monitor his lungs, no infection has ever been identified and he has not had a fever in some time. Quite amazing when you think of it.

He is getting TPN as of yesterday to give him a boost nutritionally.

And we are all very very happy that Harry is back. Harry is a pharmacist on the team who has always taken a special interest in Eric - he is a very very special man with an exceptional skill set and just an all-round nice guy.

Day +14

2008-12-19T08:18:00.002-05:00

Eric's cough got a bit worse on Tuesday so we are back to droplet precautions (masks for all who enter his room and he is confined to his room) and yet another chest xray and CT scan. By yesterday his cough seemed alot better so not sure what's up. They also did a CT scan of his abdomen area as his red blood counts dropped more than expected on Thursday.

Not really alot more to update. We're waiting on blood counts to start to rise.... As the Ottawa team does not use Neupogen to artificially stimulate white cell production after and allo and he had a marrow infusion (rather than stem cells), engraftment is expected to take longer. First signs of higher blood counts are expected sometime between 15- 20 days.

Day +10

2008-12-14T06:44:00.002-05:00

Eric has the strength, patience, persistence and good humour of a saint. The days go on and they are pretty boring, yucky and lonely - yet he justs keep on trucking.

He still sounds like he has a really bad cold - and maybe that is exactly what he has. Multiple CTs and broncoscopies are showing that his lungs are clear (thank goodness) or the myriad of IV antibiotics and anti-fungals are keeping anything from growing. I think his ear and throat are somewhat better - or else the pain meds are doing a better job of keeping the pain in check. He said his ear finally 'popped' yesterday so that must feel better.

Food has become a major issue. Between a sore throat, no appetite and unappealing hospital food that just doesn't want to stay down, he can't get the calories in that he needs. He agreed to try tube feeding over the weekend, but the first time he threw up, the tube came too. His doctors prefer the naso-gastric tube to TPN, but I think for Eric, TPN might be the answer. We'll see what happens over the next few days. Big advantage to an outpatient transplant is that you have more of the foods of your choice 24*7 and Mom is the cook! Some of the nurses are really good to put something new in front of him to sip on several times during the day. Then there are others who should not be allowed in a hospital let alone looking after people. Second big advantage to an out-patient BMT, the out-patient nurses are the best in the hospital - every one of them is simply outstanding.

So this week, we start watching for blood counts to rise. And hope that he starts to feel just a bit better....

Day + 6

2008-12-10T12:26:00.002-05:00

The days are moving along and boring continues. Although Eric hasn't had a fever in a while, the doctors are still suspicious of his lungs. He has had another chest xray, CT scan and will have a second broncoscopy today. So far nothing definitive is showing up but he does have a sore congested throat. Fortunately, it's not affecting his breathing or causing a fever.

On a brighter note, he did complain today that he wasn't allowed to eat until after the broncoscopy! Considering he has had NO appetite - I am taking this complaint as good news.

I am still snowed in at home. Traffic in Ottawa is absolutely outrageous today with the constant snowfall (2 days now) piling up and the bus drivers on strike. With a bit of luck, the snow may settle down this afternoon and they will be able to get the roads cleared so I can get into the hospital. I hate being stuck here! Glad this is an inpatient transplant this time round.

Day +3

2008-12-07T19:34:00.002-05:00

Not alot of news - which is probably a good thing. Eric is tired and has no appetite - just feeling overall blah....

Although he hasn't had a fever in over a week, the team continues to monitor him carefully for any signs of infection. So far, nothing. A tiny spot on Friday's chest xray won him a CT that he'll have sometime over the weekend when there is an open space in the schedule.

Shelley and Dave's 'at home' reception was last night and it was lovely. The snow did change our plans and Cor and I ended up staying overnight in Belleville. And that ends the months (years?) of wedding planning and weeks of celebrations!

Thanks again for your comments, emails, prayers and warm thoughts as we wait for these cells to do the trick.

The Biggest Bag O Marrow Ever!

2008-12-04T19:55:00.003-05:00

Today was transplant day and that was the biggest bag of cells that anyone had ever seen! Just under 2 litres of marrow! It was alot of fluid for Eric to take in (combined with all the regular IV antibiotics and antifungals) but it's all in there and hopefully lots of stem cells will be ready to set up housekeeping.

The actual transplant is just like a blood transfusion - it is not terribly exciting to watch. Although, I look at that bag of cells with amazement and think of the years of research behind procedures such as a bone marrow transplant. Eric is fine - Morgan arrived with a Booster Juice for him just as I was leaving and they had just watched the wedding video.

Dear donor, I hope you are not too sore following the bone marrow aspiration. Thank you.

Day - 1

2008-12-03T20:15:00.003-05:00

A bit of a bummer of a day for Eric. Some people should not be nurses... or maybe their strength is just not in helping a young man.... I have to say that 99% of the nurses who have helped Eric have been awesome -- perhaps we are spoiled! Anyway, a quick mention to the nursing supervisor and Eric will get another nurse tomorrow. I am always impressed by quick positive responses.

So, conditioning chemo is finished and it was fairly easy and well tolerated. Today Eric had a session of plasmapherisis to reduce the A antibodies in his system (don't want them to attack the A - cells that he gets tomorrow). It was tough to get veins, but Cheryl was summoned and she had him hooked up in no time. Eric has made it clear that she is the only one who is always successful in finding a vein. I figure he has been poked enough in his life that he only deserves the best. Thank you Cheryl!

Dermatology came in for a consultation today too. He has some spots on his legs that they wanted to look at. An interesting specialty... they seem to travel in pairs and do alot of "hmmm... look at this.." Bottom line is that these spots have been around for a couple of weeks, they haven't changed and they don't bother him. A biopsy would not likely tell them how to treat and it may be risky for him. It was a total non - consult.

Tomorrow is transplant day. The donor will be collected (bone marrow aspiration) in the morning. As with the first transplant, my theory is that the donor is near Ottawa or travels to Ottawa and the bone marrow harvest happens in the Ottawa Hospital. And I ain't telling how I know that! Eric will get the marrow late in the day which means that he will likely have 2 Day 0s. Saturday will be considered Day +1.

I am curious to see if Eric loses his hair again. The chemo drugs he has had do not tend to cause the type of hair loss that most chemo does. This time his hair is growing in quite fine and fair. The last time it grew back, it was very dark and coarse. We'll see - not really a huge issue for him. He's lucky that bald is in and it quite suits him!

And again, thanks for all your warm thoughts and prayers. Truly appreciated.

Day - 3

2008-12-02T07:28:00.004-05:00

Ugh - didn't really think I'd ever be starting new posts with another countdown...

Day -3 was an uneventful but sleepy day. More Fludarabine and Campath - lots of benedryl to counter some minor reactions to the Campath.

Eric was relieved to hear yesterday that the do not expect he will have the severe mucositis that he had with the first transplant. Because his white counts have been low for a while now, there will not be that sudden drop in counts that leads to the nasty sore mouth, throat and gut. Certainly hope they are right - he deserves even a tiny break.

And finally, just for you, Veronica..... After all, you have been our number 1 fan forever! You know we love your support and messages and I could never ignore a request from you.

Hola!

2008-11-30T13:36:00.009-05:00

Shelley and Dave are married and it was a wonderful week in Punta Cana - sun, sand and family. It was a nice relaxing week for Cor and I. But we all missed Eric and Morgan terribly. I can't wait to plan a family vacation for all of us. A week away and I am fully charged and ready to help Eric through the next transplant. Yes, transplant #2 is scheduled.

Last Wednesday we found out that our wonderful donor has agreed to donate again (marrow, so this means surgery for her/him). I now fully understand the need for anonymity - how could I ever begin to repay this person for their generosity - not just once but twice. To all of you who have been able to join the bone marrow donor registry, please accept my grateful and humble thanks - any of you could be saving someone's life.

So Eric started conditioning chemo on Saturday and the transplant is scheduled for Thursday. This round of chemo will be milder (I guess there is not much to kill off) and will be augmented with Campath. As I understand it (and I haven't talked to the doctors yet), this drug will help to reduce the T cells. I also think this drug will eliminate the need for plasma pharesis (which Eric hated).

He'll also be inpatient for this transplant because he has so recently experienced fevers (no infection found despite a robust series of tests). While the outpatient transplant option is great and I feel that it worked well for Eric in August, I think we are both relieved to be inpatient this time. As well as the recent fevers and the fact that this is a second transplant in 4 months, the winter season is here and a snow or ice storm could make a daily commute to the hospital close to impossible. This combination of risks cannot be ignored or mitigated.

As always, your prayers, positive thoughts and blog comments are truly appreciated and welcome.

A Good Weekend

2008-11-18T14:41:00.002-05:00

Eric had a good weekend at home. He visited the BMT unit daily for antibiotics and received blood / platelets as necessary. He is back inpatient as of yesterday and a different round of antibiotics has been initiated. With no immune system, the goal is to keep him free from infection and we expect he'll be on some sort of antibiotic until the next transplant.

We certainly appreciate the flexibility that the BMT team has shown, allowing Eric to be home when possible yet quickly re-admitting when required. Next week, the rest of the family will be in the Dominican Republic for Shelley's (Eric's big sister!) wedding. I am so looking forward to the trip and the wedding but I am equally sad that Eric and Morgan will not be travelling with us. Morgan and her family will be Eric's 'home team' while we are gone and of course, the BMT unit will continue to give him the support he needs. Luckily, phones and internet access will keep this Mom connected.

Eric reads the blog and all your comments regularly. Maybe we can convince him to keep it updated next week! As always we appreciate all your support and care and concern. I know that a few special people will comment regularly letting Eric know that they are keeping an eye on him from a distance too.

Surprise! He's Home!

2008-11-14T19:58:00.003-05:00

We were very surprised today when the doctor told Eric they would spring him from the confines of the hospital - at least for a while. With his fever gone and everything a bit settled, he is home and will return daily for blood work and IV antibiotics. He'll still need blood and platelets regularly and he is confined to his apartment. If he's out, he has to wear a mask.

The remains of yesterday's extreme reaction to the CT scan dye are still very visible. Because his platelets are low, the swelling and subsequent vomiting caused a flood of petechiae, a couple of black eyes and a burst blood vessel or two in his eyes. He looks like he met up with Rocky in a back alley.

In the meantime, the BMT team is working in the background to firm up plans for another transplant. As Eric's donor is anonymous, OneMatch now has all the information and will work with the donors (we don't know if he will have the same donor) to establish timelines and next steps.

While it is a bit scary to be out of the hospital after this roller coaster of a week, at least Eric can be comfortable at home and we have the full support of the BMT group again should issues arise.

Not a Good Day

2008-11-13T21:56:00.002-05:00

Eric had a scheduled CT scan today (his 90 day scan was past due). He's had dozens of these and they are not a big deal. Of all days, today he had an allergic reaction to the contrast dye. Just not what he needed on top of everything else.

He's feeling a bit better this evening, but his face is still swollen and he has quite a rash. And the high doses of benedryl they gave him made him both restless and sleepy - ugh...

On a brighter note, the social worker swung by for a visit and she has some tricks up her sleeve to help make this hospital stay more tolerable.

That's it for tonight. Thanks again for all your prayers and positive thoughts.

Empty Marrow

2008-11-12T20:14:00.003-05:00

We got the news we expected today. Eric's bone marrow biopsy shows empty marrow. There are no cells there to make new blood cells. Why? We don't know yet and we may never know... Sometimes it's viral and sometimes it's an obvious host rejection. Most of the time, the doctors do not find the cause.

So What's Next?

Although 'the plan' isn't in place yet, Eric will receive another infusion of donor cells. Yes, he will also need more chemo (not sure yet what the chemo will be killing...) Basically it's another transplant.

We have suspected this for the last couple of weeks so I think we are all in the 'let's do it' mode already.

Eric is feeling pretty good. The fever has not returned so hopefully the antibiotics will keep it at bay. Today they moved him back to the BMT unit, so he's set up in a nice private room with all the best nurses and the special menus.

The human spirit continues to amaze me - I am in awe of what we can do when we have to. But really! Eric and Morgan and all of us are plenty strong. We really don't need to keep proving it.

Feeling Better But Waiting for Answers

2008-11-11T19:20:00.004-05:00

Eric is feeling better today and the high fever (it hit 38.9 C last night) seems to have disappeared. This afternoon his temp was normal and despite his lack of appetite, he was happy to share a bag a chips with me. He's actually looking pretty good today and his sense of humour remains intact!

So, just to recap what's going on.... Eric had a full ablative allo transplant on August 7/08. He engrafted without serious complication and had even changed to his donor's blood type (he went from O neg > A neg). He maintained good RBC, WBC and platelet counts until mid-October. Since then all his counts have dropped. While a graft rejection is the first suspect, it is now clear that there is something destroying his blood cells (and, who knows? graft failure may also be an issue). We are currently waiting on bone marrow biopsy results to help the team determine what's going on and what we need to do to stop it.

So, at this point he is dependent on transfusions of blood and platelets and will be on IV antibiotics to kill off any opportunistic infection that may have caused the high fever.

Today was a stat holiday for most of Canada so few test results were expected. Tomorrow, we do hope that the docs will have a better view into the state of his bone marrow and start devising a solution.

But tonight there is a Sens game on and Eric's main concern today was that the TV guy would get his television turned on so that he wouldn't miss the game. I guess the TV guy was in a good mood today - he turned on the feed even without grabbing his horrendous weekly fee (cash only please) in advance....

Wondering what you can do to help? Obviously, those of you who can give blood, please do so. Other than that, prayers, good vibes, positive thoughts are all needed and welcome. For the Hodgkins folks who are always reading and so well educated in this crappy disease and its treatments, please forward any studies or research you may come across regarding graft failure, hemolytic anemia and pancytopenia.

Oh and for all you Aunts and Uncles, the TV guy prefers cash ;))))

Back In The Hospital

2008-11-11T06:59:00.002-05:00

Just a quick update that Eric was admitted last night with a fever. Not sure what the source of infection is yet - they are running the standard blood cultures and xrays and started him on IV antibiotics right away.

Will post again when we know more.

More Blood and a Bone Marrow Biopsy

2008-11-07T06:29:00.002-05:00

It was a long day in the hospital yesterday getting transfusions of red blood cells and platelets. To mix things up a bit, they added a bone marrow biopsy in the middle of the day too.

Eric takes it all in stride, but a bone marrow biopsy has to be one of the most painful procedures there is.... We knew that it had to be done to get to the bottom of this issue. The sooner they find out why he cannot hold onto blood counts, the faster they can figure out what to do about it.

I am not impressed with the blood bank. In the middle of the day, they decided they needed to do another type and cross before he could get another unit of blood (anyone know why? no...). The blood finally arrives and as the nurses check the blood, they read out o+ I jump on that and say that he can't have O+ blood. One of the nurses says, oh maybe they are starting to give him his donor's type. So much wrong with this statement.... First they have been giving him his donor's type for weeks. His chart in front of her clearly states his previous blood type (O-) and his donor type (A-).... Where the heck did O+ come from? She called the blood bank and insisted they recheck (I think she saw me give her 'the look' - my kids all know 'the look'). Another wait and a unit of O- appeared. I know mistakes happen. And there are a multitude of processes to check and double check. Yesterday too many people were too busy and all those checks and processes failed to catch this error. When you are in the hospital - pay attention and ask questions. I know that some of the nurses and doctors just think I am a pain in the ass -- well being a PITA payed off yesterday.

As always, your prayers, positive vibes and good thoughts are all appreciated!

For My U.S. Readers....

2008-11-06T05:44:00.002-05:00

Become a Donor

Join the Registry today! In honor of Marrow Awareness month, Otsuka America Pharmaceutical, Inc., has provided an unrestricted grant to cover the cost of tissue-typing tests for potential donors who join online.

Click here to sign up online today.

Remember, if you are in Canada, you can always join for free.

In Canada, click here to sign up online today

A few minutes can save a life..... thank you.

Waiting... but stable

2008-11-04T18:38:00.003-05:00

We are still waiting on the results of chimerism tests that will give us a better view into the status of Eric's graft. The good news today is that his WBC inched up just a tad last week. While no where near normal, the fact that this count has risen on its own (without growth factors) is good news to us. His marrow is making some cells and his health is otherwise good.

He continues to have regular blood testing and is scheduled for more red blood cells and platelets to keep him stable. If you can give blood, now is the time to do so - supplies are down all over and Eric (and many others) will be needing blood in the coming weeks.

As far as drugs go, his tracrolimus has been increased and his septra discontinued. Septra is known to decrease platelets so he will be scheduled to receive Pentamadine. Pentamadine is an inhaled antibiotic that Eric will receive monthly as a prophalactic treatment for PCP, a very serious opportunistic pnuemonia.

Scans are upcoming too. This will be the first set of scans since his transplant and we are certainly hoping to see good results. More to come as the date is confirmed.

A shout out to Paul.... Paul is the owner/manager of the Subway (Carlingwood) that Eric worked at prior to his relapse. Paul is one of those everyday heroes who has kept in touch with Eric. Tonight he's treating Eric to a hockey game -- and trust me... nothing makes him happier than having a chance to see his team play. For any of you wanting to do a little something for Eric - Sens tickets ALWAYS fit! And for those of you in Ottawa, stop by the Subway in Carlingwood and support Paul and his team.

Navigating Unknown Territory

2008-10-29T18:17:00.002-04:00

Well, the speed bump has become unknown territory... Eric's blood counts continue to be low. A number of tests are pending including a chimerism panel that will tell us what percentage donor cells are present. In the meantime, more blood and platelets and regular testing to monitor status.

Speed Bump

2008-10-23T20:24:00.003-04:00

We've hit a speed bump this week with some low blood counts. Not sure of the whys yet, but I guess the BMT team will top him up and then try to figure out what's going on.

More to come!

2 Units of A-

2008-10-16T18:19:00.002-04:00

For the first time in several weeks, Eric got a couple of units of blood today. And this was the first time that he received his new blood type.... A-. It is very weird to think that his blood type is now different -- definitely seems like something from a science fiction novel.

The funny bumpy rash on his palms looks a bit better. When we went in for his weekly appointment on Tuesday, all the docs had the same shrugs -- not sure what it is or if anything needs to be done. Finally Dr Huebsch comes in... takes one look and says, those are milia -- probably malignant milia. And he sent his team off to research 'milia'. If you have seen baby acne on a newborn, that's what this is. Because Eric is an adult and his immune system is still in its infancy, these darn milia multiplied out of control. So, nothing to worry about -- the milia will remain as a interesting topic of conversation but nothing serious. Dr H has been in the BMT business for decades - nothing replaces experience!

The other minor rashes he had have disappeared. Was it GvHD? Maybe, maybe not.

Other than low hemoglobin that was giving him a headache, no issues -- all continues to go well.

An interesting comment from one of the doctors this week was that they consider Eric's transplant to be a full Allo rather than a mini Allo. I didn't get a chance to ask alot of questions and I guess I was just so surprised to hear that comment that I really didn't know what to ask.... I guess Iam glad that I am only hearing this now -- sometimes ignorance is easier. If I had known this was a full Allo a few months ago, it would have been one more reason to lie awake at night.

Out Damn Spot...

2008-10-08T17:39:00.002-04:00

Eric has fascinating palms... at least that seems to be the consensus of the BMT team and the Dermatology team who all came to have a look yesterday. He has some minor rashes (wrists, ankles) that we are pretty sure is GvHD -- it's faint and not something that is bothering him or spreading quickly. All agree that we can safely watch it and see if it gets better or worse.

But then there is his palms. He has an odd looking rash on the palms of his hands that everyone agrees is 'different'. It just doesn't look like anything else they have seen - and it doesn't look like any pictures I can find of GvHD. Eric -- you need to take a picture and post it -- maybe someone out there will know what it is!

For now, they have discontinued his Septra (on the longshot that it's an allergic reaction). And his tracro levels were low, so his tacro dosage was increased. Now we wait and see.

And it took most of the day at the hospital for everyone to swing by and look at his hands. Some interesting conjecture from the various specialists. But no one as eccentric as House!

Other than that - all is well. Lots of Thanksgiving dinners coming up this weekend -- and lots to be thankful for!

Day 56

2008-10-03T19:56:00.003-04:00

Hard to believe that it has been almost 2 months since Eric's transplant.

He's still doing very well - better than I could ever have hoped. He does have a very slight rash on his wrists and a couple of bumps on his palms. The BMT docs had a look at it on Tuesday but it's not significant enough to confirm that it's graft vs host disease (GvHD). Unless it gets worse, they have decided not to do anything. And as of today, it hasn't gotten worse and it's not bothering him. Typically GvHD will show up on the palms of the hands and soles of the feet first, so it is quite likely is a bit of GvHD as his new immune cells recognize the other cells in his body.

It's a bit of balancing act at this point... We want those new cells to recognize unfamiliar cells in hopes that the new immune system will kill off any cancer cells. Yet we don't want the immune system so stimulated that GvHD becomes serious. If the rash worsens or other signs of GvHD appear, they will treat with prednisone.

Other than that, his blood counts, weight, etc are all good. He has weekly appointments for bloodwork and to 'check him out'. Between visits, he still needs to check his temperature regularly -- fever is still a serious concern. His PICC line will stay in for a bit longer and he has to get homecare to change the dressing weekly. He's down to 4 meds -- Tacrolimus (immunosuppressive), Acyclovir (anti-viral), Pantoloc (an acid reducer) and Septra (antibiotic).

And that's how things are 8 weeks post transplant!

No News Is Fantastic News

2008-09-29T20:31:00.003-04:00

So, this is as exciting as it gets... the only news this week is that the 'check engine' light is on in Eric's car -- actually, it's Cor's car -- but Eric is the one driving it the most right now, so I will call it Eric's car :)))

Eric has his weekly appointment tomorrow so we'll find out then if there is anything new we should be looking for. Eric does have a very minor rash on the inside of his wrists. No one is concerned and seeing as it started as soon as he began taking Septra (prophylactic antibiotic), it could well be a reaction to that.

Back to studying -- exam tomorrow...

Day 46 "I feel normal!"

2008-09-23T19:41:00.003-04:00

Eric's had a great week. The stomach issues have resolved and he's back to eating those big meals. He managed to pick up a cold late last week but he is shaking it off -- I never imagined that his new cells would set up an attack this quickly. I guess a simple common cold (if there is such a thing) is a good first attempt to build new immunity.

His bloodwork today showed that his hemoglobin and platelets are again on the rise after a dip last week. His WBC remains normal. Again, all good signs that the donor cells have engrafted and are getting comfortable.

So with the itching and general transplant malaise over, the stomach issues resolved and a simple cold being overcome, Eric says that he "feels normal"! That is the best news that any of us could hope for just 6 weeks post transplant.

So what happens now? Eric is still on a number of medications. He is on an antibiotic (Septra) twice weekly and an anti-viral (Acyclovir) twice daily that he will continue to take for the next year. Both these drugs are intended to prevent the more serious complications. He is still on one pill a day to keep his stomach happy (Pantoloc) and he takes his immunosuppressive (Tacrolimus) to suppress the new immune system and prevent it from aggressively attacking his organs or skin.

After 90 days, they will start to wean him off the Tacrolimus and slowly allow the new cells more 'freedom'. One of the key features of an Allo transplant is that Eric now has cells that should recognize cancer cells as foreign and eliminate them. Of course, these new cells may also recognize his organs or skin as foreign and GVHD (graft vs host disease) would be an undesirable outcome. The BMT team will monitor him closely for any signs of GVHD and treat immediately. The trick will be to maintain the delicate balance of allowing those wonderful donor cells to attack cancer cells but accept normal cells. This is where you count on having a very experienced and engaged BMT team closely following every detail.

And -- with the home hydration now complete, the doctor even suggested it's just about time that we finally pull that PICC line out. He's had it since last January and it's been a Godsend, but oh wow -- sure would be nice to see the end of that!

So, all good news today - we are blessed.

Day 39 - Grateful for Little Frustrations...

2008-09-16T19:25:00.004-04:00

Ever have a bad day? I guess most of us have had days like the one Eric and I just had. It was full of frustrations and ended without any of our "issues" being resolved.

Today Eric was scheduled for his first post transplant follow up in 'MOD L'. From here on, all Eric's appointments will be with the BMT team in the BMT clinic. In Ottawa, everyone who needs to see a hematologist knows about MOD L.

To start off, the scheduler did not have Eric's info and no appointment had been booked. That was an easy fix - they squeezed him in at 11am. Arriving at 11, we realized how hard they had to squeeze to fit us in.... The waiting area was a sea of masked BMT patients (they are easy to spot!). We settled in for a long wait and finally got into a room at 12:45. It didn't take a rocket scientist to realize that everyone had waited equally long and that the admins, coordinators and doctors weren't going to see a lunch break. So that little irritation was quickly squelched.

Eric has been plagued with a sore stomach... No one has really been able to figure out what's wrong so today, our goal was to tackle two issues -- see what we can do about the sore gut (that is impacting eating and exercise) and get prescriptions filled. The doctor could easily locate the pain but wanted to see what was going on. If we could get to the ultrasound unit immediately, they would do a scan and send the report back with us. WOW -- gotta love when things work out like that. An hour later scan done and report in hand, we head back to MOD L to find another full waiting area. Made sure they knew that Eric was really continuing his 11am appointment and they got us back in within 20 minutes.

The ultrasound didn't shed any light on the sore gut... A slightly enlarged spleen and liver were expected (remember his blood system is working miracles right now). In good news, there were no signs of fungal infection and all bile ducts looked good. That eliminates two of the most concerning possibilities. But it left us with no idea why his stomach hurts.

On to prescriptions. After several trips back and forth between MOD L and the pharmacy, I gave up! Several approvals are needed to fill his prescriptions under his insurance and they had not been filed. The BMT pharmacist will work to clear this up tomorrow. I have learned that sometimes waiting for the right people is the best solution - even if it takes another day.

By now it's end of day. I am trying to start back to work this week so headed back to the office to retrieve my laptop and briefcase (we expected a 1 hour appointment) then fought rush hour traffic to get Eric home and head back to Morrisburg. Morgan had already had to leave mid afternoon to make it to work.

I get to go back tomorrow to get the prescription challenge sorted and we both go back Friday for a follow up on the sore belly.

And while we all hope that our upcoming twice weekly appointments are less frustrating and more goal oriented (not to mention shorter)... tonight I have to stop myself and be grateful that Eric is here with us. That he has been to hell and back and still smiles. And that he has come through a risky transplant safely.

If I have to have frustrating days, I am sure glad I get to spend them with Eric and the rest of my wonderfully supportive family and friends.

2008 NASCAR Foundation Blood and Marrow Drive

2008-09-12T12:10:00.005-04:00

July to October at race tracks nationwide
This summer and fall, join with thousands of other race fans to help save lives.
Be part of the annual NASCAR Foundation® Blood and Marrow Drive — give blood and join the NMDP Registry as a bone marrow donor. Race tracks nationwide have teamed up with the Hendrick Marrow Program and National Marrow Donor Program (NMDP), The NASCAR Foundation and the Jimmie Johnson Foundation (www.jimmiejohnsonfoundation.org) to save lives.

Life.
It's in you.Join the donor Registry and give hope to patients everywhere.
To help you save a life, the Nationwide Foundation and the Hendrick Marrow Program are covering costs for volunteers who join at a participating track or online during a special campaign September 7 - 22, 2008. Join at a race track near you Visit The NASCAR Foundation to find participating tracks: http://foundation.nascar.com/NetCommunity/Page.aspx?&pid=201&srcid=183

Can't make it to a track? Join the NMDPRegistry for free September 7 - 22
Join online now.

Discharged from BMT!

2008-09-11T09:08:00.002-04:00

Eric was officially discharged from the Bone Marrow Transplant program yesterday! Although he has been outpatient for most of the transplant, this does mean that he no longer has to make daily trips to the hospital. It also signifies that his blood counts have finally climbed into a low normal range (rather than a critical range) and he is doing well.

He will continue to get hydration daily at home. The drugs have been hard on his kidneys and the hydration is to support his kidneys while his immunosuppressants are tweaked. He'll have twice weekly appointments for a while to check blood counts and his overall health.

For me, it means that I am at home! I have lived at the kids apartment since the end of July. Both times I came home for a visit, Eric ended up in Emergency! I am going back to work next week and will probably bounce between Morrisburg and the apartment a bit depending on what Eric needs and how he's feeling. We have left one car in Ottawa for Morgan and Eric so we may have to figure out car logistics for the next while.

Thanks again for all your well wishes, comments, emails and calls -- it is appreciated.

Day +30

2008-09-07T07:28:00.003-04:00

The past month has seemed like a time warp. One moment the time seems to have flown by; yet the next moment, it feels like a lifetime....

Eric continues to do very well. He still makes a daily trip to the BMT daycare unit for bloodwork, prophylactic antibiotics and hydration. They continue to adjust his meds and usually that means fewer pills to take - yeah!!! His blood counts are rising although all are still below normal. They expect his blood counts to be up and down for sometime as the donor cells become comfortable in his body and his body adjusts to the new cells.

Although he has to avoid large crowds where the chance of meeting sick people increases, Eric is allowed to go out while taking sensible precautions. He's been out with friends, out for walks, trips to the mall during off peak hours. He is allowed to eat out as long as he makes careful choices. He avoids deli meats (don't we all right now following the extensive recall?!), raw eggs, blue cheese -- anything that may harbour nasty bacterias or fungi. Raw fruits and vegetables are carefully prepared, cooked or avoided. Meats are well done - no medium rare steak for a little while.

So what's next? Over the coming months, we continue the hyper-vigilence around Eric's general health. The BMT team has told him that most Allo transplant patients have another hospital stay at some point - usually an infection that the baby immune system is unable to handle. He'll continue to take his temperature twice a day and be on the lookout for any changes that might signal the start of an infection. He also watches carefully for any skin changes/rashes or diarrhea that could be a sign of GVHD (graft vs host disease). His first chimerism test (to assess the percentage of donor cells in his body) will be at day +60.

Still some hurdles ahead, but Day +30 looks like a mighty fine day!

Stand Up to Cancer

2008-09-05T20:19:00.007-04:00

If you are reading this, you are touched by cancer. You know me or Eric and are interested in seeing him get better and see the end of chemo, nausea, pain and baldness for him and all the other people we know who are fighting this fight.

Please take a moment to Stand Up to Cancer... You can make a donation that goes directly to Hodgkins Lymophoma research through the Alese Coco Fight2Win organization or donate through the Stand Up To Cancer website. In Canada, please consider the Leukemia and Lymphoma Society of Canada.

Your donation may be the one that makes the difference.

Thanks everyone,

Kathy

Doing Well

2008-09-03T15:18:00.006-04:00

We are back to the Outpatient BMT routine. Eric visits daily for hydration and blood work. His kidneys are having some issues with the Tacrolimus (an immunosuppressive) and he needs daily monitoring of the Tac levels in his blood. He is working to increase his fluid intake and the pharmacist and hematologists have reduced both the tacrolimus and fluconozole. Today's blood work showed some improvement so we seem to be on the right track.

Other than a lack of appetite, Eric is doing quite well. He's happy to be back home and out of the confines of isolation! He's getting out for daily walks but obviously, stays away from crowds. With his brand new immune system, it will take time to get it working again. Getting well is his full time job for the next little while and we are all working to support him in that goal.

Blogging About Transplants....

2008-09-01T20:46:00.003-04:00

So blogging is pretty common in the transplant world (actually I guess it is common in the cancer world...). I have learned so much in reading blogs by other transplant warriors... And of course, how do I find these blogs? Google, of course.

So, I have been wondering... do donors blog too? Found out today that both Eric and I have played the "hmmm.... wonder if our donor wrote about his/her experience in a blog?" game. Hey, what can I say... I am curious!

No, we didn't find any clues online about the mysterious and generous donor but I did find this great story:

Jim's Story

This is a story of a transplant patient who did find his donor through a google search!

Get Me Outa Here!

2008-08-31T13:17:00.009-04:00

Hi Everyone,
Sorry for the lack of updates - it's been a bit of a frustrating week. After Eric was admitted to the inpatient BMT ward last week with a fever, the parainfluenza virus that has been making the rounds at the hospital became a serious concern for several BMT patients. Of course any infection or virus is very serious (and potentially fatal) for those with a compromised immune system. As a result of the virus, the BMT program shut down their outpatient clinics and all transplant patients had to be either inpatient or well enough to be completely discharged to the regular weekly clinic follow up program. This change kept Eric in the hospital to complete his IV antibiotics...

I hate the idea that he is stuck in isolation on a ward where we know patients have come down with this virus. The hospital did a major re-organization of the ward to ensure those who were not struck by the virus had every isolation technique in play to avoid exposure. I am really not sure where those with the virus have gone -- but anyone who had any kind of a cough seems to have been moved - hoping that all are okay. Access to the floor has been severely limited (this is already a tightly controlled environment), additional staff brought in, there are enough masks, gloves, gowns and Purell to sink a ship and the tension permeates the entire floor. You get the picture -- it just hasn't been a very pleasant place to be....

They also gave him a dose of IVIG to provide some passive immunity. He had a nasty reaction to the IVIG but recovered fast. We are very grateful that his original fever never seemed to re-occur and no infection was found. Likewise, we are grateful that he has been able to avoid the parainfluenza virus. But, wow -- will we be glad to see the end of the hospital! Expecting he will be outa there tomorrow.

Other than the hospital frustrations, Eric continues to do well. His blood counts are slowly rising (counts rise more slowly when marrow is used rather than peripheral stem cells) and the musositis has resolved itself. Nothing tastes good but he eats and drinks through the day. Tough to get enough calories in (especially with hospital food). It really paid off for him to be in such good shape with extra weight going into the transplant. Waiting to do this transplant was a good plan. I know that this would have been much harder last spring when he was still recuperating from chemo regimens and that infection.

That's it, that's all!

What Would You Do If You Weren't Afraid?

2008-08-27T20:00:00.007-04:00

This question was raised twice today and it got me thinking about risk taking and how risk can lead to growth and even excellence....

We are in the middle of the largest risk I personally can imagine. Yet Eric is doing great. He's doing great because many people before him were willing to take the risk of a bone marrow transplant. His doctor was willing to take the risk of performing bone marrow transplants 30 YEARS AGO. His donor took the risk of joining the bone marrow registry and then undergoing surgery to donate bone marrow for a stranger.

In my line of work, risk management is a daily routine. While a first reaction risk is often negative, many many risks have positive, even exciting outcomes because the risk is understood and managed. And where would our world be if we were all afraid to do what seems risky or impossible? I thank all who have faced a fear, taken a risk, designed strategies for risk management and learned how to make the impossible... possible.

From Wikipedia...

Arete (Greek: ἀρετή; pronounced /ˈærəteɪ/ in English), in its basic sense, means "goodness", "excellence" or "virtue" of any kind. In its earliest appearance in Greek, this notion of excellence was bound up with the notion of the fulfillment of purpose or function; the act of living up to one's full potential.

I firmly believe that this transplant, and its accompanying risk, gives Eric the opportunity to live up to his full potential.

I enjoyed this video - hope you do too...

Eric's Blood Counts Today

WBC 0.7
Hgb 106
Platelets 47

Hgb and Platelets have stayed stable without transfusions since Sunday! Yeah!!!!

We Like Boring!

2008-08-26T09:54:00.002-04:00

It's been a boring few days -- and that is what everyone hopes for in the midst of a bone marrow transplant.

Eric remains in the hospital on round the clock IV antibiotics and the fever has not returned since Friday - yeah! His blood counts continue to rise and those new neutrophils are helping the sore mouth/throat/gut/bum heal. He is able to eat most foods althought nothing tastes good. His taste buds are gone as a result of the mucositis. They'll eventually be back but it makes for bland food for a while.

As long as things continue on this path, I expect he'll be back home as soon as the course of round the clock antibiotics is complete.

Thanks again to everyone for the cards, emails and prayers. You are all so kind.

A Little Detour

2008-08-23T20:54:00.006-04:00

Well, that little fever that Eric has had all week finally spiked last night and he was admitted to hospital to allow a different IV antibiotic (PIP/TAZ) to be added to his list of meds.

And in good news, his white counts continue to rise (very slooooowly) and he is feeling just a smidgen better. At least his voice is almost back and he is able to swallow small bites of solid food.

I am taking a break and visiting Cor and the poodles in Morrisburg - yes, I am at home! Hopefully Morgan is also getting a good night sleep tonight (she did the ER run last night)and enjoys the Stream Watch program tomorrow.
You have probably all noticed the lovely blonde that is frequently seen with Eric in his pics -- that is Morgan! Morgan is probably the very best medicine that Eric has in his favour -- she and her family have been incredibly supportive and Eric is a very lucky guy to have such a sweetie for a girlfriend.

Saturday's Blood Counts

WBC 0.3
Hgb 79 (2 units today)
Platelets 27 (1 unit of single donor platelets today)

Day + 13 WBC = 0.2!!

2008-08-21T19:35:00.004-04:00

Yeah!!!! It's 13 days post transplant and today we saw the white blood count nudge up from 0.1 to 0.2! This is a good sign and is as early as we could have possibly hoped for.

White blood cells are the first cells to show up following transplant and we hope they quickly get to work to start to relieve Eric's mucositis .

Still a long path ahead, but this is certainly a glimmer of sunshine at the end of that tunnel!

Thursday's Blood Counts Day 13

WBC 0.2
Hgb 72 (got 2 units of RBCs today)
Platelets 42

edited.... because apparently I am challenged in counting to Day 13 and establishing the correct day of the week! Be glad I am not trying to manage projects while we manage this BMT!

Platelets Work Like Magic

2008-08-19T10:59:00.003-04:00

Until recently I didn't think much about platelets - who does? I knew that they were a component of my blood and that they were responsible for clotting the blood. When I cut myself it didn't occur to me that my platelets would fail -- everytime, they rose to the challenge and the cut became a scab. My kids all fell off bikes, scraped their knees and elbows and played sports - every cut, scrape and nosebleed healed miraculously.

During a bone marrow transplant, platelet counts drop to critical levels. A normal count is 150–400 x 109/L. Yesterday morning Eric's platelets were 18. He has a standing order for platelet transfusion when they hit 10. So when he had a nosebleed late last night, we were very concerned. And sure enough, there were not enough platelets circulating, the nosebleed continued and we had to head in to the hospital for a unit of platelets. Here's where it works like magic... Within 15 minutes of the start of the platelet infusion, that nasty (yes, as bad as you imagine) noseblood suddenly stopped. The donated platelets had found their way to the bleed and went to work. Eric was back home and in bed within a couple of hours.

And there is more. As a transplant patient, Eric must receive single donor platelets. That means that a wonderful person spent a couple of hours hooked up to the apherisis machine sometime within the last 5 days and donated platelets. I understand that most major blood donation centers have the ability to collect platelet donations -- please consider helping this magic continue for everyone who needs blood products.

Did you know? (I didn't!)
- A bone marrow transplant patient may need up to 120 units of platelets.
- Your body will replace the donated platelets within 72 hours.
- If you meet the requirements for donating blood, you probably can give platelets.
- Because platelets can be stored for only five days, the need for platelet donations is vast and continuous.

Monday's (Day 10) Blood Counts
WBC 0.1 (they don't report anything lower than this)
Hgb 89 / 81 after nosebleed and platelets
Platelets 18 / 34 after platelet transfusion

A Long Day

2008-08-17T20:22:00.003-04:00

Today started with a 38C fever at 3am.... Into to the hospital to start a broad spectrum antibiotic and blood cultures. Of course once there, the fever had disappeared. During the day he had a couple of more units of blood (in addition to 2 units of RBCs and one of platelets on Saturday). More antibiotics before we headed for home around noon. We both grabbed a pillow and a couch and napped and watched TV all afternoon.

The fever hovers between 37 - 38 and no signs of infection that anyone can find. So we'll continue with daily IV antibiotics and monitor as always. Other than a very sore mouth and throat, he's hanging in there - what a tough kid! A Fentanyl patch and some morphine helps somewhat - at least he can sleep and can still swallow pills, sip Boost, milkshakes, etc. Not a chance he'll be eating a hamburger today!

He's losing his hair again so shaved his head -- but is very itchy everywhere. I guess that is the hair dying and falling out.

Today's Counts

WBC 0.1
Hgb 79
Platelets 29

Change of Plans....

2008-08-15T14:58:00.003-04:00

As there is a respiratory virus currently circulating in the hospital, the decision was made today to have Eric remain as an outpatient. Rationale being that, Eric is doing fine at home and increasing the time in the hospital increases the risk of catching this virus.

So he will continue on an outpatient basis and will be in isolation while in the day care unit.

Of course, all the outpatient guidelines regarding fever etc. remain in play. If he can't eat/drink or if he has a fever, he will be admitted.

We really didn't need any additional stress...

Today's blood counts:

WBC 0.2
HgB 82
platelets 20

Expecting a couple of units of RBCs and platelets tomorrow.

Amazed!

2008-08-14T20:20:00.002-04:00

We continue to be amazed at how well Eric is doing. His counts are nearing rock bottom and his mouth and throat are more sore each day but he continues to eat and drink well and feels "okay".

While he would be comfortable remaining at home, the BMT team will admit him tomorrow so that they can keep very close tabs on him while he is neutropenic in case of fever/infection. This is not unexpected or unusual. If anything, it is unusual that he is still at home and doing well this far into the transplant schedule.

Thanks again to all for the calls, cards, emails and blog comments. It is appreciated more than you know.

Day +4????

2008-08-12T22:08:00.005-04:00

Yes, that's right -- we have lost a day... No, no time travel! Because the transplant was late in the day on the Thursday, they count the Friday as Day 0. That means that today was day +4.

Eric is still visiting the outpatient BMT clinic daily - he hasn't felt the need to move to inpatient care yet. They check blood counts (still dropping each day) and give him fluids. Yesterday he also had another dose of methotrexate (one of the strategies to reduce GvHD). Sometimes there are changes in meds based on blood results or symptoms. A new drug to help with stomach issues was added today. Eric is feeling the effects - he has a sore mouth and is losing his taste buds. Nausea comes and goes.

He is still feeling well enough to request Harvey's for dinner tonight and go out for a walk with Morgan this evening.

We continue to focus on the current day. A transplant is a long process and while I like to know what to expect next, I stay away from guessing timelines or setting unrealistic expectations. Today was a good day and I know that we have the right teams aligned to keep the process moving in the right direction.

Have a great day everyone and give yourself a pat on the back if you are a blood donor!

Day +3

2008-08-10T18:13:00.003-04:00

Hello! Everything seems to be going as expected. Eric is very tired (actually we are both napping alot). Yesterday wasn't a great day. He woke up with a headache that just wouldn't go away. Finally after a second dose of morphine and a good sleep, the headache and nausea subsided enough to have a bowl of soup and watch some of the Olympics.

Today the headache is gone and the nausea is a back under control. He had his first dose of methotrexate yesterday and will have another tomorrow.

Still outpatient and that has been really nice. Much nicer to be in your own bed and have the right snacks close by. The morning in the outpatient area is just long enough to get some fluid (staying ahead of any potential hydration issues), blood tests and review Eric's current status and identify anything that will help him feel better.

The hardest days are yet to come - but we are going in the right direction, so we'll keep putting one foot in front of the other.

This can be a very lonely and scary journey. Thanks to all of you who have left comments of support and been in touch. It really means alot to both Eric and myself.

Kathy

Day + 1

2008-08-08T13:53:00.003-04:00

Without further ado or fanfare, the cells arrived as expected and were transfused by 6pm last night. Eric passed the time playing video games and having dinner.

Now we watch carefully and wait. Wait for Eric's old cells to die out (white counts and platelets are dropping daily) and then wait for the new marrow to begin to produce cells. This timeframe is one of the key risk points and all will carefully monitor blood counts, temperature, overall wellbeing, etc. Part of the reason that Eric will remain outpatient as long as possible is to reduce exposure to the serious germs in hospitals. Surprisingly, his doctors are far more concerned about the normal bateria in his body and the hospital environment than anything he will run into at home or outside. Of course, if you are sick -- have a cough, sore throat, cold -- STAY AWAY!!

So What Will Happen?

2008-08-06T21:48:00.005-04:00

Tomorrow is transplant day. Eric is still well enough to be an outpatient so we are to be at the hospital for 9 tomorrow morning. He will have another session of plasma exchange to further lower the level of A antibodies in his blood. Today he went from 32 to 8 - the target number is 4 -- he should hit that tomorrow. During the plasma exchange, Eric's blood is circulated through an apherisis machine (like a centrifuge). The plasma is removed and all other blood components are returned to him with an artificial substance to replace the plasma. This process helps ensure that the A antibodies in his system are reduced so that they will not attempt to fight the donor's A- cells.

He will receive his new marrow sometime after 12 noon (48 hours after his last chemo treatment). No surgery or fancy process as with most transplants. The cells are administered like a blood transfusion; they then make their way to the bone marrow to start the engraftment process. And how long will engraftment take? Everyone is different. We hope that blood tests will show cells in about 3 weeks. Complete engraftment will take months.

The donor is anonymous. We hope that a year from now we will have the pleasure of meeting this most generous stranger (if both Eric and the donor wish to open the file). I remain in awe of all who have given such a gift and those who have volunteered to join the bone marrow registry. You have no idea what it means to us.

Interesting bit of info... the marrow will be delivered from the airport to the hospital by the RCMP (Royal Canadian Mounted Police). Apparently the BMT unit treated an RCMP member a while back and at that time, the local force chose to initiate the tradition of delivering the marrow. I trust they are using a cruiser and will not be on horseback!

Again, thanks to all for your prayers, positive thoughts and support.

Last Chemo!

2008-08-05T22:07:00.002-04:00

Eric finished his last high dose chemo today -- yes, the LAST CHEMO EVER. It started out as a bit of a rough day. I think I saw the nurses retreat to draw straws as Eric arrived carrying a bucket.... yeah... it was a bucket day.

It was a very long day but he's feeling much better tonight. We went for a walk to the beach and stopped at the Dairy Queen on the way back.

Day -4

2008-08-03T14:01:00.006-04:00

Six down and two more chemos to go.... Eric is coping extremely well with both the Fludarabine and Busulfan chemo drugs. Busulfan is definitely harder and has several side effects for which he is taking additional medications. By the time he takes the anti-nausea meds, the anti-seizure meds, pills to protect his liver and another to protect his kidneys (AND the chemo), he just feels kinda blah....

By Tuesday the days will get longer. As chemo completes, he will have plasmapharesis to help prepare his system for his donor marrow (the plan is to remove his A antibodies as the donor is an A- blood type)He will also start ATG to help prevent or lessen GVHD (Graft vs Host Disease).

As always, positive thoughts and prayers most welcome.

Day -6

2008-08-01T12:33:00.003-04:00

Eric had his fourth and final infusion of Fludarabine this morning. All is well -- these infusions are fast and he has been fortunate to have no side effects.

Tomorrow he starts the Busulfan as well as several drugs to help counter-act the more serious side effects of this chemo. The Busulfan is given over 3 hours so we will have longer stays in the Day Unit as well.

This week he has also had a chance to meet with the supporting members of the BMT team including the Pharmacist (Harry and Eric have become good friends!), the dietician and the social worker. While meeting with these people, I realized what a blessing it was that we could not proceed to a transplant earlier in the year. During this waiting period, Eric has been able to improve his health, figure out disability insurance and stabilize his finances. Through improved nutrition, he has put on a much needed 25 pounds, then added a few more so that he is entering his SCT with some padding! An Allo transplant is very hard on the body and mind. We are glad that Eric is in good shape to take on this challenge.

Wondering What You Can Do?

2008-07-31T06:15:00.004-04:00

Lots of people have asked how they can help...

A couple of suggestions:

- Eric will need lots of blood and platelet transfusions over the next few weeks. The blood supply is always at it's lowest mid-summer. If you can, please give blood. In Canada, call 1 888 2donate to book an appointment.

- He'll likely groan at me for this one.... But, Eric likes getting mail (yep - good ole fashioned snail mail). The MacLeod family will recognize his Grampy in that! Feel free to send a card, joke, magazine to him:

Eric Brule
320 Croydon Ave Apt 610
Ottawa ON
K2B 5P3

Thanks Everyone -- appreciate all your support!

Day -8 Done!

2008-07-30T22:01:00.002-04:00

Another uneventful day... chemo early in the morning and then we had the rest of the day off. Loving the outpatient option!