Eric's Legacy

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

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

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

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

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

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

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

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

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

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

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

Love, Mom
August 11, 2009

Heartbroken

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

This is just so wrong.

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

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


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

Devastating Day

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

I will update when we have more information.

Prayers please.

Up and Down - In and Out

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

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

Good To See CNN Helping Raise Awareness

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



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

Wow!

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

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

But today's numbers are astonishing!

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

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

A Short Stay!

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

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

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

Argh...

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

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

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

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

Done and Back to Class

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

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

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

Yet Again!

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

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

So Much Better Today!

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

ATG - Yuck....

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

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

Membership Has It's Privileges?

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

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

A Plan

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

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

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


From the Aplastic Anemia and MDS International Foundation

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

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

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

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

All those prayers and positive vibes are most appreciated.

Mind Boggling....

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

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

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

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

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

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


www.onematch.ca

www.marrow.org


Thank you

Nothing New

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

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

It's always something...

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

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

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

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

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

Six Months

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

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

Catching Up

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!

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

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....

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!!!

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!

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....

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

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....

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!

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

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!

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Come Back Next Week!

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

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

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

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.

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

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

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

"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

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

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

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!

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!

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 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

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.