Wednesday, October 13, 2010

The Eulogy

I need to be quite honest….when asked who will speak today I did not hesitate for a single moment. And then I sat down to write. And I had nothing. Nothing. After 10 months of pouring my heart out in 108 posts on the blog, I had nothing to say. What could I say? And more so, how could I say anything, for to say something would mean accepting the truth. This horrible, nightmarish, heartbreaking truth – that my Brandon, the love of my life, my bashert, was gone forever. And with him, my heart.

I have been to funerals before and heard people speak about the great person that the individual was, about how much they were loved – but that just seems redundant. Redundant because of the 1000’s of hits our blog has received, redundant because of the hundreds of emails, posts, and facebook messages that have been circulating on the Internet, redundant because of all of you who are here today. SO many people loved Brandon – we have heard from colleagues, school friends, teachers, hockey buddies. We have heard from friends around the world. We have heard from fans who were lucky enough to have seen him play and we have heard from other families afflicted by this horrible disease. We have heard from friends of friends and we have heard from strangers. Even ABC News in Pensacola where he played hockey had a segment about him on Monday night.

I have read all the messages, all the posts and I have realized something – you are not here because of how special Brandon was, you are here, and people are mourning all around the world, because of how special Brandon made YOU feel. And that was his greatest gift – whether you were a close friend, an acquaintance, a fan, a neighbor or a stranger – when Brandon focused on you, you knew he was focused, and he cared – whether he advised you, guided you, chatted with you or simply smiled at you – at that moment he made you feel special.

And I was the luckiest recipient of this gift. Not a single day went by without him explicitly telling me he loved me. Not a single day went by where he did not turn to me to tell me I was beautiful – even today, like this, he would have said that to me. I knew I was his priority no matter what. He was taking care of me always.

And our children, our beautiful Dana and Koby – they know without a doubt how much daddy loved them. The second he walked into the room, the second they heard his footsteps coming down the stairs, their faces would light up for daddy. And his face would show that same adoration in return – always. “I love my family” is what we heard every day. My children lost the most this week, they lost the best parent possible, they lost the ability to know just how special Brandon was, and how special they could feel with him.

Brandon’s death is wrong. I know this from the core of my being. I know it from all of you. This is wrong! My next speech about Brandon was supposed to be on our 10th anniversary, when we had planned to renew our vows, not today, on this horrible day!!

You each have your own cherished memories of Brandon. Some of you have shared those stories and some have chosen to hang on to yours. I have 6 years of memories, each one touches my heart – and so what can I share today? And then I decided – the final blog post of “Cancer – Our Fairytale.”

And here it is:
On Saturday morning the phone rang at 7:30am and my heart skipped a beat. Nothing good can come from a call this early on a Saturday. It was Brandon’s mom. Brandon had suffered a seizure and the hospital called to come in right away. And I ran…literally. I balled the entire way to the hospital. Please no, please let this be nothing, please no. When I got to the hospital I was so scared to get in the elevator. Part of me wanted so badly to run the other way. I got to his room and ICU was there checking his vitals, prepping to take him for a CT scan. And there was Brandon, my love, with his eyes rolled back and his body limp. And I lost it. We rushed him to CT and our friend Leslie, who is a doctor, walked in with the technician to read the scan. He came out and told us that there was a large mass. He did not have to say anymore.

The Drs gathered us in a room to talk. They could run an MRI but the outcome would not change. It was time to just make sure that Brandon was comfortable. How long? How long would we still have with him? There was no way to tell – it could be days.
And so, from 9am Saturday morning, until 1pm Monday afternoon, his mom and I did not leave his side. I lay down on the bed beside my love. I held his hand, I pulled his arm around me, I spooned with him, I stroked his hair and face, and I told him I loved him a thousand times. I slept better than I had in the previous 2 months, 2 months without Brandon by my side. This is where I belonged – next to him…hearing him breath, feeling him beside me. People came in, people left, but I never left my spot on his chest, MY spot since we have been together.

His mom sat by the bed during that same time, held his other hand, kissed his forehead, sang him lullabies, wet his lips to keep them from drying out and cooled his head with damp clothes.

As the hours passed Brandon’s breathing became more and more difficult. He was suffering now. We told him it was ok to go.

At around 10:30am the Dr came in and told us we may still have another 24 hours of this. Arlene and I looked at each other – we needed to tell all our family outside that it could be a while. Arlene decided she would go. After 2 days of sitting by his bed, she would leave for 3 minutes to walk down the hall.

And then Brandon, my prince, gave us both his final gift. As I lay looking up at him, with the 2 of us alone in the room, there was suddenly a change. All of a sudden his eyes, which had been glazed over for days came into complete focus, their blue colour returned. And he looked at me…really looked at me. “Are you looking at me? I love you” I yelled. And then he smiled, Brandon, in a coma for 2 days, smiled. And then he died.

And that is the essence of Brandon – even with his final breath, he spared his mom the horror of the moment and he saved one last memory and smile for me. What a gift!

When I started this fairytale 10 months ago this ending was not an option. Throughout this entire struggle this outcome was not an option. It was supposed to end with “happily ever after”. It didn’t. But our love is forever after. And my dear Brandon, who wanted to live more than anything – for me, for his daughter Dana and for our baby Koby, made sure that he showed me that love until the very end. As I said, I have never, for a single second, ever doubted how much Brandon loved me, nor have I ever questioned my love for him.

But this last moment…. Thank you my love - for Every moment, for our 2 beautiful children, for loving me and allowing me to love you.

This fairytale will not close with the words “the end” for this does not end…

I love you so much Brandon, with my whole heart, and I will love you forever.

Monday, October 4, 2010

Funeral details

Brandon died at 11am this morning.

Funeral will be at Beth Tzedec Synagogue on Weds at 11:30am.
Details will be on Benjamin's website at www.benjaminsparkmemorialchapel.ca

I love you Brandon.

Sunday, October 3, 2010

NO!!!!!!!!!!!!!!

Yesterday morning Brandon had a seizure.
The CT scan showed irreparable damage to his brain.
Brandon is no longer waking up.
They have stopped all treatment.
Focus now is keeping him comfortable.

And we wait

We wait for....

What kind of fucking fairytale is this?

Nightmare
I would give anything to wake up.
I am empty.
My heart is broken - forever.

Friday, October 1, 2010

No Surprise Visitors - please

As much as we appreciate the outpouring of support, I would like to ask people NOT to drop by the hospital without calling first. Several reasons:

1. Brandon is in no state for visitors...and neither are we
2. It is really a time for close family ONLY
3. He is not there for display....as people come in and just stare --- I know people don't mean to d0 that, but it feels that way
4. I don't want Brandon to know how bad things are, and people dropping in who have not been in contact or on visits before is just too fishy (Brandon can still hear and is not an idiot)
5. We need room for the Drs to do their checks and it is a small room
6. We just can't handle other people there right now (who have not checked with us first)

Once Brandon is feeling better, we will have a celebration and you can all come give him a hug.
But not now.

Hope everyone understands - BIG HUG to you all!!

This needs to get better

Not sure why, but I came to the hospital today with such high hopes....today he would be better, today would be the turning point on the road to recovery....

On the way to the hospital (with the kids in tow), Brandon's mom called me to come up alone first, to assess whether we should bring in the kids. And my heart sank.

Walked into his room and there he lay - unresponsive, not moving, not speaking. I called out his name - nothing. And I lost it. Totally lost it!

I did take in the kids, hoping that they would stir the same reaction as yesterday. He did manage to put an arm around Koby, but no words, no eye contact. And Koby lay there completely still, as if he knew today was different than yesterday. And then we brought in Dana - and she was scared and did not want to sit with Daddy or hug daddy. We finally got her to kiss him on the head. No reaction from Brandon.

He did have a few lucid moments. I asked him if he loved me. After struggling for several moments he murmured one word - "oodles" - our little expression for each other - I love you oodles. And whenever I would lean my head against his lips I would get a kiss. Moments...moments when there is a speck of hope in this horrible nightmare.

Medically he is not doing well. He has swelling in his brain (caused by the virus in his brain), liver issues, kidney issues, bladder virus...and today a new concern about Graft vs Host (which would be the biggest concern). The Drs are doing everything they can and reaching out to other centres across North America. They are not too optimistic.

I hate this so much! I hate seeing him like this! I NEED him to get better!
PLEASE PLEASE PLEASE!!!!!!

Thursday, September 30, 2010

A Tough Day (with pics)

We arrived at the hospital this morning and went to see Brandon with his doctors (not the kids). They asked him to stick out his tongue...no response....no comprehension of what they wanted, just a bland stare back at the Dr. Then the Dr stuck out his tongue and Brandon could copy him. They asked him to move his right leg - no movement. Move his left leg - nothing. He could not speak, and when he did he just repeated the same word over and over. I had to leave the room.
Then we met with the Drs - no change - still has liver and kidney issues, not sure what is going on with his brain but suspect the virus is still there. Brandon's brother asked the tough questions - we heard the tough answers. FUCK! Timeline? No idea. FUCK!

Now it was time to take in the kids (who were waiting downstairs with my parents). Brandon's amazing nurse Liann got them special robes, blew up the rubber gloves like balloons (and colored them like bunny rabbits), and gave Dana a pink stethoscope (huge hit). So now, dressed as "doctors", they were ready to go see daddy.

Wow - what a beautiful scene - Brandon gave a huge smile when he saw them. We put the kids on the bed - Koby jumped straight into his arms and would not let go. Dana, a bit more timid, laid back but slowly cuddled up to daddy and touched his new soft hair. And Brandon hugged them, and kissed them, and squeezed them. And though he could not talk, his eyes glowed with love.

And I was smiling.
And I was miserable...heartbroken.
The thought creeps in - could these be the last moments? Are these the last pictures?

If g-d was watching he would know that Brandon belongs with us and needs to get back home to the kids. They need him and I need him. We are meant to be together as a family!

The rest of the day was tough. Brandon was not responsive and could not really speak, It's also tough to tell if he hears you because the eyes just stare ahead, no sign of comprehension. And there are moments when he gets so agitated and he tries to get out of the bed...which he can't.

At the end of the day he sat up and I helped him. He leaned towards me, put his arm around my shoulder and gave me a couple of sweet kisses. He looked at me and smiled. And I smiled back and told him I love him so much.

This fairytale story needs a happy ending. It's time for the good witch to appear and save the day. And allow the prince to return home.

PLEASE PLEASE PLEASE!!!!!!!!!!!!!!!
It needs to happen, it just has to!






Wednesday, September 29, 2010

The wrong words

Drs pulled us into a meeting today:

"If there is anyone that needs to see Brandon then they probably should come soon. Bring the kids tomorrow."

And what the fuck am I supposed to tell my 2-year old and 4 year-old? What the fuck am I supposed to say?

Tuesday, September 28, 2010

No words

I am at the point of zero patience so this will be a very straight forward and emotionless update - that's all I can handle right now...

  • Liver complications (from feeding tube that they had to stop)
  • Kidney complications (from antivirals)
  • Delirious - suspect either shingles (for the 3rd time) or infection in his brain
  • Sleeps all the time
  • When awake has no idea what is going on
  • Shits and pees himself in the bed and not even aware of it
  • Can't speak properly
  • Repeats answers (they assume due to the brain issues)
  • Can hardly move (not even to lift his own arm)
  • Trouble remembering the kids' names
  • Says kids are 18 and 17

All Dr's keep repeating is "he is very sick"

Scared shitless!

Tuesday, September 21, 2010

And now a slap to the other cheek

Further tests have shown that the virus has spread to his brain.

This explains the delirium.
This scares me to death!

On a double dose of anti-viral medication that they hope will destroy the shingles.

What can I say??

Thursday, September 16, 2010

Week from Hell (with pics)

It's one thing to sit down to write that we are frustrated because nothing has changed. It is quite another to write about things getting worse. Unfortunately I am doing the latter.

I don't even know where to begin - so many things going wrong....

First off, Brandon is still in the hospital. Since August 2nd, we have been waiting to get him home. He has not seen the kids since then and there is still no end in sight.

The doctors had managed to get the shingles under control, but the nerve pain it caused was so bad that pain management became the major priority. A Pain Team was assigned to Brandon to experiment with different medicinal cocktails so that he will feel more comfortable. They did succeed in managing the constant discomfort, but they were not able to impact the episodes of shooting spasms through his body...episodes that leave Brandon screaming in pain. The nerve endings are so sensitive, that a light touch can turn into agony - think of a small spark igniting an oil tanker.

With the introduction of all this medication came other side effects. In the last 2 weeks Brandon has become completely incoherent. There are glimpses of lucidity, but all in all he has mentally 'lost it'. He has hallucinations of things going on around him, he has conversations about things that don't exist, he responds to people that are not there, and he mumbles things under his breath.

As part of this, he also gets paranoid and angry. For example, he yelled at me yesterday because "Don't you hear Koby asking you to take him outside? Get up and take him! Why don't you take him? Get up already!!"

For all those who know Brandon, you know that he does not yell, and he is usually quite logical.

This has been the hardest for me. Before, at least I could talk to him and we could have conversations about what is going on with him and the kids. Now there is nobody to talk to because he does not even know where he is.

It was so bad the other day that the Dr's became concerned that it was more than medication. There was a danger that the shingles virus had spread to his spine and brain. So they performed a spinal tap and extracted fluid to be tested. Thank G-d it came back negative for infection!
Yet he is still not lucid. And that is scary on many fronts. By not understanding where he is, he is not fighting. When he does not hallucinate he sleeps...and the days go by.

Another new occurrence is fainting spells. Brandon has been passing out every time he sits up or stands up. 2 days ago he passed out 4 times. The first time he landed on the floor and hit his head - off to CT scan to check for damage...none was found. He did however land on his foot and it is so swollen that the Drs suspect a fracture - we are waiting for results. If he did not have strength to stand before, now there is no way.

And today we were hit with another bomb - the shingles are back! Not the old ones, but a brand new batch. So back to isolation we go...because that's all we needed!

I honestly don't know how much more he can take. He is so frail...how can he fight? I don't know.

I am posting pictures of Brandon - not for shock value, but because it is important to show how devastating this disease can be...even to a young, healthy athlete. This body has no resemblance to Brandon...it is a 'sick' body...and it is destroying my Brandon! So my priority is to get his mind back so he can fight to get back what is rightfully his...and get back home to his life.




Wednesday, September 15, 2010

Brandon's Hebrew Name for Prayers

Friends have been asking for Hebrew names so that they can pray for Brandon at synagogue this week.

His Hebrew name is: Yechezkel Chaim
Mom's Hebrew name: Azeeza

We need as many as we can get.
Thank you

Thursday, September 9, 2010

Rosh Hashana

Today is Rosh Hashana, the Jewish New Year.

Like many holidays, it is rich with tradition and symbolism. For example:
  • Meals often include apples and honey - to symbolize a sweet new year
  • Round Challah is served - to symbolize the continuation of life
  • A shofar (ram's horn) is blown to "awaken and remind people to reflect on their lives"

Jewish tradition teaches that during the High Holy Days (Rosh Hashana and Yom Kippur) G-d decides who will live and who will die in the coming year. As a result, during this time, Jews examine their lives and repent for any wrongs they have committed in the previous year. We are encouraged to make amends and plan for improving ourselves in the next year. In this way, Rosh Hashana is all about striving to be a better person.

The traditional greeting for Rosh Hashana is "Shana Tovah" - happy new year. The more complete greeting includes "may you be inscribed and sealed for a good year".

I sat in synagogue this morning without Brandon and listened to the prayer asking to be inscribed for a good year. And I was filled with rage. Rage that Brandon, who is so kind and good and giving, who has a heart of gold, is lying in pain in a hospital instead of celebrating with us. Rage that families are sitting here taking life for granted. Rage that this merciful g-d that we are praying to dares (yes, I actually thought "dares") to put Brandon through this. I know this is not the spirit of the holiday, and part of me hates that I felt this way, but here is the truth.

If G-d truly is making these decisions in the next 10 days, then Brandon should be healthy and home quickly. Because that is the right thing, because that would be just, because the current state is not fair according to any scripture you read.

So I am having a hard time getting into the 'spirit' of the holiday. I hope g-d understands, I hope g-d hears us, and I hope that this year will truly be "Shana Tovah".

Sunday, September 5, 2010

Nothing New

Well we've passed the one month mark and still nothing new to report.

Still in hospital, still in pain, still high on meds, still not home.

Wednesday, August 25, 2010

Still at PMH

I haven't posted an update in quite a while.

Having thought about that fact, I believe it is because my hope was to post one with a title "Great news" or "Back home" or "Life is normal". Unfortunately, it looks like it will be some time before that post appears on the blog....

After 23 days Brandon is still in hospital.
I wish I could say that things are better, but they are not - He is now in complete isolation with a case of the Shingles. This is the adult form of chicken pox and is quite painful. He still has abdominal pain, it's still difficult to eat, he is still on a high level of pain medication and he continues to lose weight.

My poor husband. Believe me, neither one of us is the type to look or ask for pity, but I do pity him at this point. He is in pain ALL the time and that is no way to be. It's at the stage WAY BEYOND 'not fair'.

His spirits are also starting to be affected. Not surprisingly of course, but that is not the Brandon that we all know. He has moments of tears where he cries out "I can't take this any more". He misses the kids beyond words and he wants to come home.

I know that people are still thinking about and praying for him. I pray that those prayers somehow are heard by 'someone'.

We are tired....tired of this whole thing.

Thursday, August 12, 2010

Are You Kidding Me?!?!?!


FINALLY FINALLY FINALLY there was a step taken yesterday at the hospital!

Not sure what happened - the stars aligned, someone was drunk, pressure from above (thanks to some political pull - you know who you are), or sheer desperation to find an answer....

...but they finally performed an endoscopy.

And by doing this they actually found that Brandon has an ulcerated esophagus.

Great news - we have an answer. Although it may only be part of the answer, it is something.

So why am I so exasperated???
Because:

  • Before we even went to the hospital, I told Brandon that what he is describing sounds like the ulcers I had when I was pregnant
  • When we got to the hospital I told them to check for ulcers
  • When they transferred him to PMH I asked when they were going to do an endoscopy
  • When each specialist walked in I mentioned ulcers and asked for an endoscopy
  • Even when they were SURE it was GVH I asked them to still do an endoscopy so that at least they could rule out some things

And more so, because:

  • Some of this pain could have been eliminated 2 weeks ago
  • Some of the medication they put him on in the meantime has actually damaged his liver
  • We now have secondary infections that I am not convinced would have been there had this been treated

I am so upset and frustrated! Not sure what else I could have done, but I know that nobody listened, Drs were stubborn and set in their own mindsets and Brandon paid the price.

Are you kidding me!!

Side note: Picture of Brandon's teeny tiny legs...result of laying in bed for 2 weeks.



Monday, August 9, 2010

Still Nothing

I have officially reached the point of ultimate frustration with the Dr.s on Brandon's team. He has now been in the hospital since last Monday and they STILL have not determined what is wrong with him.

I don't blame them for that...but I am critical of the decision-making process (or lack thereof). Maybe it's the fact that improving efficiency and effectiveness is something that I do for a living or maybe it's the fact that my love is still in excruciating pain...or maybe it's both.

Every time another specialist walks in, he/she boldly states that the answer is ________ and the proper treatment is ________. There is then discussion with the rest of the team and somehow that decision is revoked and another solution is selected. You know what - I'd even be fine with that....except that other solution has thus far been "do nothing". It seems like with all this expertise and knowledge in the room, it creates a paralysis of action. And that is not acceptable to me!

Someone needs to take charge and do SOMETHING, because doing NOTHING has not been working!!

Meanwhile Brandon is still in pain, drugged out of his mind (literally hallucinating now) and new issues are popping up (suddenly they are suspecting shingles in his liver).

So today "wife from hell" will show up and kick some medical butt!!!

Thursday, August 5, 2010

"Paging Dr. House"

We are living a real-life episode of HOUSE.
And I now understand how frustrated the characters on the show can get with the medical field.

Brandon is now Day 4 in the hospital and I can not count the number of specialists (and specialties) that have come in to offer their opinions and hypotheses.

And they are all different... Everything from heart problem (which it is not) to ulcer, to gall stones, to perforated bowels, to stomach ileus, to liver issue.....and the list goes on.

Meanwhile, we have the patient - Brandon is still in horrible pain, getting more frustrated and agitated by the minute, going through test after test to gather additional clues to this abdominal mystery.

I think we can safely assume Brandon is not pregnant.

So I would like to page Dr. House and his team - Please come see us and come up with your brilliant diagnosis....so Brandon can finally feel better and get home.

Tuesday, August 3, 2010

And again....

Back in hospital as of last night.

Really??? Can we not have 1 week of calm????

As you all know, Brandon came back home last Monday.
Everything was great....feeling good, life back to 'normal'.

Sunday he began feeling pain in his upper abdomen. By Monday afternoon he was feeling so much pain that he ASKED to go to the hospital. For those who know Brandon, you realize that this is VERY atypical - he is more likely to tough it out at home.

So back to Toronto General Emerg where luckily we were met by the same great Dr as last time. She attended to Brandon immediately (as opposed to waiting hours). Some pain medication (thank you), a CAT scan and x-ray later, they determined that:

- he has a gall stone
- and potentially something else

And now we wait while they try to determine if and what the 'something else' is.

Now Brandon is back at Princess Margaret. Unfortunately he is still in a lot of pain.
Hopefully they can figure everything out quickly and get him back home...feeling GOOD.

Tuesday, July 27, 2010

Back Home

Brandon was released from the hospital yesterday feeling well.
It was so nice for all of us to have him back home where he belongs.

This stint in hospital really made us realize what a long road we are on - one with many curves and bumps along the way. I guess this is something we will have to accept, and hope that it gets smoother with time.

He is feeling good, though VERY weak.
Happy to be home :)

Thursday, July 22, 2010

Enough - I mean it this time!

Arghhh! That pretty much describes how we are feeling in the most polite fashion. If I were less polite there are a few choice words I can think of.

Brandon is back in the hospital again.

[Warning - graphic post]

Last Tuesday Brandon started feeling discomfort when he urinated. He mentioned this at his regular appointment. They took a culture and sent him home.
By Thursday he was peeing blood and was in excruciating pain. On Friday he took himself to the hospital (without an appt) and insisted that they do something (anything) to relieve some of the pain. They gave him some antibiotics and arranged for a nurse to come to our house over the weekend to hook up Saline - to flush out what they believed was a virus.
Throughout the weekend Brandon was in HORRIBLE pain - literally moaning and hunching over every time he went to pee - which by now was every 15 minutes!! He was exhausted but could not stay asleep because he always needed to pee. TORTURE!

On Monday Brandon had another appointment. Nothing new. Monday night was spent in the bathroom (too graphic).

Tuesday he went back to the hospital for his appointment. They assessed him and decided that he would not be going home. They hooked him up to an IV and started the Saline flow. He was finally given some Morphine which at least dulled the pain.

Their diagnosis was that indeed he had a virus in his bladder - something that we could all get but we could fight. As Brandon's immune system is suppressed, it turned into something painful. The result is frequent urination, inflammation, bleeding and pain. That would have to go away on its own as there is nothing to do about a virus. They are also concerned about GVH (Graft vs Host) of the gut and wanted to control this right away. This is quite serious and if it gets out of hand it can last for months and be quite uncomfortable and painful - basically everything goes through you and out - you can't digest anything properly.

So now they are talking about keeping him in hospital at least until Tuesday. They are observing him to make sure he is in fact over the risk of GVH.

It is such a roller coaster. A very frustrating, painful, and random roller coaster that we want to get off of.

I feel so horrible for Brandon. He has been through so much and it does not seem to end. One thing after another. And I feel so helpless as he is in pain and there is nothing I can do. And I hate it! I just want him to be ok already!!

Wednesday, July 14, 2010

A Few Tough Weeks

It's been a tough few weeks for Brandon since his hospital stint with Pneumonia. Unfortunately recovery is VERY slow.

He is still coughing quite a lot, which is annoying during the day and dreadful at night. On one hand his medications make him quite sleepy, but on the other hand he can't sleep because he is either coughing or uncomfortable.

As is his nature, Brandon does not complain much, but I can see how frustrated and exhausted he is - "I just want to sleep through a night." In addition, by midnight he heads downstairs so as not to disturb me all night - sweet, but I would rather have him beside me.

The Dr's don't seem too concerned. They checked his lungs via chest xray and next week they may try another pulmonary test to see what is going on.

Overall Brandon is quite tired and weak. He had hoped to be further along to "normal" by this time, so that adds insult to injury.

So we take it day by day and see how he feels. And we try to be patient with this monster that just won't go away quickly enough.

Wednesday, July 7, 2010

My Prince - Still as Charming as Ever

I am so lucky!

My Prince is just as romantic as he has ever been (even from a hospital bed)...

As a surprise, for our 5th anniversary, he had our wedding song recorded by the same 2 artists that performed it at our wedding!!!

Thank you Justin (Brandon's brother) for writing such a beautiful song.
Thank you Robyn and Mark for the beautiful performance.

Thank you Brandon for continuing to surprise me with such thoughtful loving gifts.

We played the song, we danced in our living room, and I cried - perfect moment!

I love you so much my Prince!

Tuesday, July 6, 2010

Our 5th Anniversary

This past Saturday Brandon and I celebrated our 5th wedding anniversary.
Needless to say that this was special in so many ways...

First (and most obviously) is the fact that WE CELEBRATED OUR 5th ANNIVERSARY! Not to sound too morose, but the stakes were stacked against us when Brandon was diagnosed 6 months ago. He HAS made it...and was feeling well enough to organize and attend this momentous evening.

Second - 5 years already! Wow! In some ways it feels like only yesterday that we were standing under the Chupah at The Liberty Grand on a beautiful and perfect summer day. Today we have 2 amazing, smart and funny children (that are growing up so fast), a wonderful loving home and shared memories of some awesome vacations around the world.

Third - 5 years only? Really? The amount of crap we have endured in only 5 years astounds me. My illness and hospitalization, Koby's issues and hospitalization, Brandon's illness... I whole-heartedly proclaim that we have lived through more S*#t than some people have in a lifetime!!

Finally - through the good, the bad, the amazing and the miserable - no matter what - Brandon and I have supported each other, loved each other, held each other, given each other strength, smiled and moved forward - looking ahead with a positive spirit.

So as we enjoyed dinner and raised our glasses for a toast, we celebrated the past, we teared up about the past and we wished for the future...

Happiness, love and health
Amen

Monday, June 28, 2010

When it rains....

Last night it poured in Toronto!
And it poured in the Grajcer household...

Brandon back in hospital
Basement flooded
Car broken into

Time for the sun to start shining!!

More bumps in the Road - Brandon back in hospital

We were just starting to get used to normal again, and unfortunately we find ourselves back in the hospital. They are great here, but I HATE this place, and I hate not having Brandon at home with us!

Last Tuesday Brandon started feeling sick (cold) and his clinic Dr told him to keep watch. On Thursday Brandon went on a golf excursion with his work and was not feeling well at all - nauseous, coughing, hacking....

On Friday his colleague drove him straight to North York General Emergency - we couldn't go to his regular hospital because of the G20 - REALLY?!?!?
Anyways - quite eerie to be back at the hospital where he was first diagnosed.
They did some blood tests and a chest x-ray to check for pneumonia but everything came back ok so we went home.

Saturday night was one of the worst Brandon has had since he got sick. Aside from the nausea, coughing, headache and hacking, he also had SEVERE bone pain in his legs. That is a side effect of reducing one of his drugs. He spent ALL night groaning in pain....unbearable pain that we could not stop.

So Sunday morning we headed into emerg where they performed all the tests again and added a CAT scan of his chest. Results showed some cloudiness so he was admitted last night. They now have him in isolation and are going to do additional tests to see what type of infection he has in his lungs (bacterial, fungal or viral). That will help determine the diagnosis.

He is actually feeling ok now, but they need to be extra careful as he is more susceptible to illness and it is tougher for him to recover.

So we are back where we started - hopefully just a forced rest for my sweetie and he needs the sleep as much as anything.

Friday, June 11, 2010

Magic Wishes

After Dana's graduation we took her out for lunch.
She found a nickel on the ground and we told her she could make a wish.
Consistent with her wishes over the last few months...

"I wish Daddy feels better."
"He is feeling better Dana. Your wish is coming true. It worked!"

The smile on Dana's face at that moment could melt a glacier.

"Can I make another wish?"
"Sure."
"I wish I can always wear dresses."

Oh, the beauty, power and innocence of young wishes.

Dana - My wish is that all your wishes come true.

Milestone

Yesterday Dana graduated from nursery - big girl making us all proud!

My parents arrived from Montreal to be there, Brandon's parents were there as well.

But most meaningful of all was Dana's daddy - crouching in front of the front row, taking pictures of his daughter and smiling with pure joy as she sang "These are the People in my Family".

It's been almost 6 months since Brandon was diagnosed with Leukemia. At the time (and for quite some time after that) we had no idea what the future would look like. Truth be told, we had no concept of what "future" actually meant.

So to be here today, at this monumental occasion, is breathtaking!

Brandon is stronger every day, he is taking care of us, he is playing with the kids, we are out on dates, he is enjoying friends and family...

BRANDON IS HERE.
And he is cancer-free.
And the future is bright.

And this is one of the many momentous occasions that we will celebrate together...as a family.

Sunday, June 6, 2010

The Witch is dead!!

Results of bone marrow test -

NO BLAST CELLS!

NO CANCER!!!

What a great post to be typing :)
Now we deal with the Graft vs Host Disease as Brandon continues to beat all the demons!

Wednesday, June 2, 2010

Bone Marrow Test

Yesterday Brandon had his 60-day post-transplant bone marrow aspiration. Not a fun experience for anyone (especially Brandon). But as usual he put on a brave face as they cork-screwed the "straw" into his hip.

This is a big one - they are checking to make sure that he is still in remission and they are also checking the composition of the marrow (new cells vs old cells) hoping to see the new cells at a high level.

Now we wait for the results....probably in a week.

Everything will be great!

Monday, May 31, 2010

Running for a Cure

Last year Brandon ran his first marathon. We later discovered that he had Leukemia during the race. I was overly impressed with him then ... this year is beyond all odds and expectations!!

This year we are BOTH running to raise money for the Leukemia and Lymphoma Society of Canada (participating in the Nike Women's 1/2 marathon).

This is our small way of giving back for all the miracles that we have received through Brandon's medical treatment and hopefully we can help others that are afflicted with this horrible nightmare.

If you would like to support us with a donation, please use the link below:

http://my.e2rm.com/personalPage.aspx?SID=2623797

Thank you in advance for your support in this initiative!!

Tuesday, May 18, 2010

A Bit of a Roller Coaster

Unfortunately, as the Dr's warned us before the transplant, Brandon has hit a bump in the ride. His new immune system has grafted well...so well though that it is now attacking his body and he has a bad case of graft vs host disease (GVHD). And although the Dr's do want to see a bit of this, Brandon's was getting too harsh.

Brandon has GVHD on his skin. As a result he literally looks like a burn victim. His skin is a deep red and has peeled completely on his face (after flaking for about a week). His feet blistered completely - to the point where he could not even walk, and his eyes swelled so much that he could not close them. He could not blink, and there was one point where he fell asleep on the couch with his eyes open - CREEPY!! It is quite painful and even hurts when he tries to apply his medication.

On Friday he had his regular checkup and the Dr's decided that they have to take action. Taking action means that Brandon has to start on a new medication and double the steroids that he is on. This does not seem like a big deal but the danger is very real...the medication increases his chances of coming out of remission (in yrs to come). Brandon of course asked if there was anything else that could be done, but unfortunately not.

So on Friday Brandon started the new meds. Today he is feeling (and looking) better. The Dr's saw him again today and are happier with his condition.

So the coaster continues...

In truth, as much as the Dr's warn you about these things in advance, I was convinced that Brandon would just be getting better each day and that he would soon be back to normal. I am starting to realize that the road ahead may be a lot longer than the road behind. And that sucks!

Tuesday, May 11, 2010

Looking Back at the Past

This weekend we watched our wedding video - something we hadn't done in a few years. What a blast to the past! Several things struck me (hard) as I watched the 2 of us from July 2005...

First of all - What an absolutely AMAZING day!!! We had such a great time and watching it brought back all those great memories.

Second - If I tried, could I still fit in that dress? LOL

Third - Look how far we have come in 5 years. We now watch this video with our 2 healthy, happy kids...who were sitting mesmerized with smiles on their faces as they watched their mom and dad's royal wedding (Dana asked me where the carriage was).

Fourth - Look how much shit we have lived through in only 5 years - my sickness and 2 month hospital stay, Koby's danger at birth and 1 month hospital stay and now Brandon's cancer! More than a couple should have in a lifetime!!

Fifth - Brandon - how healthy he looked...and how ready I am for him to feel (and eventually look) that way again.

And finally - As we listened to the speeches, I turned to Brandon and told him (in all honesty) that I could stand up today with the exact same speech and mean every single word with all my heart - all the excitement, happiness and love I felt for him at that time have only grown stronger...and I am just as honoured today to be his wife!

Tuesday, May 4, 2010

Great Milestone Today!

Brandon had his regular check-up at the clinic and they are so happy with his progress that they cancelled Friday's check up!

YAYYYYYY!!!!!!!!

Friday, April 30, 2010

It's Been a Good Week

Happy (ok, thrilled) to report that we have had a good week :)
Brandon is feeling ok - a bit tired at moments, but overall gaining his strength back.

He has been taking Dana to school, he headed into work a few times, has cooked for us, made it to the golf course (for 1 hole) and has bought the BIG BBQ to start the summer off right.

I am so proud of him - he really is doing his best to resume life BC (before cancer) and is succeeding for the most part.

I LOVE having him home and so do the kids.
So far the Dr's are also happy with his progress.

BIG SIGH

Monday, April 26, 2010

An "almost" normal weekend

We just spent our first weekend at home with the WHOLE family and it was great!

On Friday night Brandon's parents came over and we had a traditional Shabbat dinner - lit candles, ate challah, sang some songs with the kids...It was nice to make a toast with everyone.

Saturday we had brunch with my sister and her family - Brandon cooked up a batch of his special crepes. Saturday night we even went to a movie together!
Sunday was a lazy day spent with friends indoors.

Although Brandon is extremely tired, he is determined to get back to normal and is trying his best - to the point of taking the kids Sunday morning so I could sleep in a bit.

My prince is finally home and we are cherishing every moment.

And in case I have not mentioned it lately - I am absolutely in love with this man!!!

Thursday, April 22, 2010

Home at last - officially

Yesterday Brandon was officially discharged from the hospital!

He is now home, with the family, where he belongs.

He is thrilled, kids are overwhelmed and I am ecstatic!

What a great feeling to wake up this morning with him by my side.
And daddy took Dana to school today :)

Here's hoping we've turned a corner and the road ahead has fewer bumps...

Tuesday, April 20, 2010

Surprise :)

The front door opens last night at about 6:30 and in walks Brandon!

He was feeling well so they let him leave the hospital for a few hours...he arranged to have one of our friends bring him home :)

He played with the kids (who were going nuts with excitement) and we ate dinner together and enjoyed some belated birthday cake.

Tough to say goodbye at the end of the night, but we sure cherished every moment!!

What a wonderful surprise!!

Saturday, April 17, 2010

Shit!!!

Well - all the glorious plans and hopes for a happy birthday return home went to shit last night.

Brandon did come home...and then proceeded to puke his guts out the entire night. What a nightmare!! Poor him.

We drove home at about 4pm, walked into the house and our darling Koby immediately started yelling "dadda dadda". Tears filled Brandon's eyes as father and son were reunited :) I honestly was not sure how Koby would react, but he made me so proud!

Then about an hour later Dana arrived home, saw Brandon and a huge smile lit up her face as she rushed to her daddy (who by this time was lying flat on the couch unable to move). She tried to give him a hug and kiss, but Brandon could not even manage that. True to form, my daughter announces "daddy, you know I love you so so much!". She then takes a good look at his face, at his very swollen lips and says "daddy's lips look like a goldfish". Amazing how that girl can always make me laugh.

Unfortunately Brandon began vomiting and Dana's face showed her horror. So quick decision that it would be best to eat dinner and have her sleep at Bubby's house. Brandon never made it to the dinner table, never had his requested cake, never opened his gifts.

My heart sank as Dana came to Brandon with balloons and a gift, only to have him open his eyes and nod at her. She asked "will daddy open his present now...when are we blowing candles...." only to be told "daddy is too sick today". "Will daddy sleep at home or the hospital?" At home. "Yay!" She is amazing!!

So Dana went to sleep at bubby's. Brandon moved upstairs (not an easy trip) and then spent the night vomiting pure bile.

At 8am we drove back to the hospital, they connected him to multiple IVs and he is finally sleeping.

Not a great birthday at all!
So now we wait again and hope that he improves here over the next few days.
He is suffering so much.
Enough already!!

Friday, April 16, 2010

HAPPY BIRTHDAY BRANDON!

The Princess invited 3 fairies to the celebration - Flora, Fauna and Merryweather.
(For those sans kids - these are Sleeping Beauty's fairies - that we read EVERY night)

Flora gave Brandon the gift of love.
Fauna gave Brandon the gift of family.
But before Merryweather could give her gift, the evil fairy Malificent appeared. She was furious because she hadn't been invited. She pointed at Brandon and said - "Before the sun sets on his 34th birthday, he shall get sick."
Luckily, Merryweather still hadn't given Brandon her gift. She could not undo Malificent's curse, but she could change it - "Brandon shall be sick, but he will receive a gift of bone marrow and then live a wonderful, long and healthy life."

So my fairytale friends - As Brandon celebrates his 34th birthday - let's show that evil fairy that she can NOT mess with my prince!!

Happy Birthday my love!!!
You are my life, my hero and gratefully my husband - I am so proud of you and I love you more than anything!!

Thursday, April 15, 2010

Year 33 comes to and end...and we are ready!

Tomorrow is my Love's birthday, and there is a good chance he will be allowed home to celebrate :))))
Would that not be the most amazing gift for us all!!!

He is doing better, yet VERY exhausted!!!

Big milestone yesterday as he was allowed out of isolation for the first time...so we travelled from floor 14 to floor 1, grabbed a water, and headed to the rooftop deck of the hospital for some seriously lacking fresh air.... Brandon soaked it up for a few minutes, then we headed back in as he was tired.

Looking forward to having him home - with me and the kids - FINALLY!!!

FINGERS CROSSED, KNOCK ON WOOD, PLEASE PLEASE PLEASE

Wednesday, April 14, 2010

Spring is in the Air

Sun is shining, birds are chirping, flowers are blooming, and Brandon is engrafting!!

The numbers are looking good (poo poo) - so good that even the Drs are surprised with the results -
Hgb - 115
WBC - 2.3
Neutrophils - 1.1
Platelets - 294

Brandon's mouth and throat are healing slowly so he is able to eat and drink a little bit now - good thing as he is getting way to skinny for me :)

He is experiencing some Graft vs Host Disease (GVHD) in the form of a skin rash on his body - this is actually a positive as it shows that the new immune system is working and recognizing foreign objects (in this case Brandon). They will keep this under control with medication.

2 days until Brandon's birthday and he is determined to be home to celebrate - what a gift that would be!!

Sunday, April 11, 2010

Resurgence of The Numbers

All through the first round of chemo (induction) we were daily and diligently watching Brandon's blood counts. At the time we needed to see them hit zero (to indicate death to the cancer) and then rise (to show the recovery of Brandon's immune system).

Now we are back to the daily report. This time we are looking to see evidence that the newly transplanted stem cells have engrafted and are starting to grow into a new HEALTHY immune system. The speed at which this happens varies from one person to the next, but depends heavily on the match quality (related donor is best, Brandon was lucky to find a non-related 10/10 match) and on the Graft vs Host Disease (GVHD) that can occur.

Well we are THRILLED to report that at day +12 (12 days post transplant), Brandon is starting to show signs of success (knock on wood). His platelets have started to rise on their own and his white blood cell count has increased ever so slightly!!

BIG PHEW!!!

In terms of how Brandon is feeling - the last 3 days have been REALLY tough - the toughest thus far. His mouth and throat are covered in sores and these are so painful that he can't eat or drink anything (not even water) and he can't even speak. They are giving him some morphine which dulls the pain a bit and allows him to sleep. He has lost quite a bit of weight already and his hair has fallen out again. Apparently he should start feeling better as his numbers continue to increase so we are hopeful that in a few days there will be some relief.

As for his spirit - what can I say? It is inspiring!! This Friday will be Brandon's birthday and he is 'convincing' his Dr that he will be home to celebrate. I hope this one birthday wish can come true so that he can spend it with the kids!

So he fights, and we wait -We celebrate the great news and we hope the tough moments start to diminish.

Tuesday, April 6, 2010

Prince Charming, Prince Eric, Prince Philip....can't compare in the least!

Brandon is doing great!
He is sick, nauseous at times, has some pain, his throat is burning off...but he is doing great!

First off - all these symptoms were expected. And although they suck (and Brandon would stress that they REALLY do), I prefer these to an unexpected reaction to the transplant.

Second - Brandon has remained positive and he is fighting with all he has...Although EXTREMELY weak, he got on the exercise bike yesterday for 10 minutes; although his throat is in horrible pain and he has no taste buds, he forced himself to eat some food. And although he is tired, he lets me visit with him and chat and spend time.

My prince rocks!!!!

I can't wait for him to be home! I miss him so so much!!! And so do the kids.
As Brandon so nicely put it - "I am looking forward to being boring." We have had enough drama over the last 2 years....can't wait to answer the question "what's new" with "nothing".

Saturday, April 3, 2010

And here we go...

Now day 4 post transplant and just as "promised" Brandon is feeling worse by the hour. He has officially stopped eating, is vomiting at a consistent click and is quite weak. Also his blood pressure is through the roof and his pulse is low (not sure what that means - the dr.s don't seem too concerned). Mentally, he has very little patience, he is upset and very antsy and anxious.

Hard for my love to go through, hard for me to watch.

He wishes for and welcomes sleep, as that is a temporary escape from reality. In his own words "I wish I could wake up on June 1 and walk out of here feeling great."

The kids can no longer see him as he is now in isolation for a few weeks. We have skype, but Brandon has little patience and I'm not sure this is the best way for the kids to see him. They do talk to him on the phone, and yesterday Dana let him now that "I like it better when you are at home daddy".

The crazy part is that factually he is going to get a lot worse in the next 2 weeks. And that makes this really tough for everyone! I feel so bad for him - he does not deserve this! Nobody deserves this, but he has had enough!

Yesterday a woman came to visit Brandon - she was here to say hi to the nurses as she celebrates her 1 year post transplant. She looks and feels great and is living life back to normal. I am looking forward to having Brandon visit this ward in the same way next year.

So I sit with him now as he finally sleeps. Too bad 'True Love's Kiss' can not yet work its magic. But soon enough...

Wednesday, March 31, 2010

Gift of Life

The moment we were waiting for arrived last night in the form of a baggie filled with pink liquid...

9:45 - Cooler arrives at nurses station


9:50 - Confirmed package for Brandon - 17o ml of pure stem cells (yes - that's all)


10:00 - Begin transfusion - a VERY emotional moment

10:45 - Transfusion complete (yes, about 45 minutes start to finish)



Now it's up to these smart cells to find their way into Brandon's bones and begin developing a healthy immune system.


TRULY - A Gift of Life

Thank you donor for being our hero!

Monday, March 29, 2010

Passover - Time for a Miracle

Tonight is Passover, and we celebrate the miracle of God as he freed the Jews from the bondage and hardship of slavery in Egypt. He sent our hero Moses to confront Pharaoh to "let me people go". And after some heavy convincing (or "punishments" as Dana calls them), the Jews are free. They still have some obstacles to overcome as they travel to the promised land, but the "good" do not falter and eventually they reach their destination.

We are not religious at all, but we are traditional and we do celebrate the Jewish holidays. I can not help but parallel the story of Passover to Brandon's current journey...

He too is suffering through a horrible hardship that is tearing his body apart. But his strong spirit and will to beat this (my hero) keeps fighting our villain. And I, together with all our friends and family are there shouting with all our might "Let him go! Let him be free of this!" Tomorrow help arrives in the form of a transplant. And the road ahead is long, and we will meet obstacles in our path, but the good (and Brandon is the BEST) will reach the ultimate destination - a FULL lifetime of health with his family.

So God - As you parted the sea for the Jews to cross through and drowned the Egyptian army, open Brandon's body to the new marrow, and drown any remaining cancer in the process. As you provided hope and signs when the Jews' belief weakened, provide hope to Brandon when the tough days present themselves. As you strengthened them in the desert and brought them home, strengthen Brandon and bring him home.

And next year, when we all sit down to read about the Jewish miracle of Passover, let us look back and recount our own very personal miracle of Passover.

Amen.

The battle continues...and the punches come hard

What a tough few days for my brave prince.

On Weds he walked into this hospital with the most amazing attitude - smiling, joking with the staff, taking walks every day, spending time on the exercise bike....basically doing EVERYTHING in his power to stay strong for as long as possible.



On Thursday the chemo started - still strong, still smiling

On Friday - in hospital but out for Friday night dinner at his mom's with the family

On Saturday he started to feel the impact a bit - nausea, legs getting weaker, but still determined to push himself. So he actually got to come home for a couple of hours - to see the kids, have dinner with the family.

On Sunday we spent the evening together in the hospital - and still my amazing husband wanted to head out (in the rain) to breathe some fresh air.

Today was rough - 2 rounds of total body irradiation - basically he lies still for 45 minutes (each time) and beams of radiation travel over his body.



He is really feeling the downward slope now, and I can see it. He is exhausted and sleeping most of the day, nauseous (and vomiting), legs are weak, his body is restless, eyes are getting glossy, he is slurring his words.

And yet, he still turns to me, smiles and says "You are beautiful". What can I say?

It's really tough to see him suffer this way, and to know that it will only be getting worse before it gets any better. When he smiles now he tears up "it's not fair". That's right my love, it's not fair. Not fair at all. In fact, it F%##%%ing sucks!

"But I will beat this...keep my eyes on the goal" - still the hockey player at the end of the day :)

Tomorrow is TRANSPLANT DAY. They expect the stem cells to "arrive" in the evening and the procedure to happen tomorrow night. Then (apparently) he will feel much worse as his body (hopefully) accepts this new immune system.

He will be in isolation after tomorrow night. So tomorrow day I will bring the kids for a visit, and then we will rely on Skype for a while.

Thanks again to everyone for your continued support...please think of us tomorrow.


Tuesday, March 23, 2010

Reality Bites...HARD

Tomorrow Brandon goes back into the hospital, to get the s*** kicked out of him, for 4-6 weeks, with the hope that we will never EVER have to deal with this cancer again.



I hate it! I love it! I dread it, and I thank God that we are here.



Last time Brandon was admitted he was so sick, so weak, so desparate for relief that it was an easy trip to make. But this time it is so odd - he is feeling GREAT - playing hockey, out for a run, working, playing with the kids. Things are back to normal, and now we are heading back into "hell mode".



The thought of what he is about to go through makes me sick to my stomach - chemo, total body iradiation, steroids, immunosuppression drugs, isolation from the kids....and this is all ASIDE from the transplant itself and the myriad of complications we had to sign off on last week.



I pray and wish with everything I am that this is behind us quickly.



I hate that he will be away from home again, that he will be separated from the kids, that the bed will be empty. I love my life with my husband and I want it back.



On the weekend we took the kids to the mall - Dana wanted money to throw into the fountain. "Make a wish" we told her. "I wish daddy feels better". Of course Brandon and I started to tear up - couldn't give her enough kisses :)



Yesterday Brandon wrote 'just in case' letters for me and the kids. To be opened if... I am looking forward to the day when he reads them at their weddings. Until then I never want to lay eyes on them.



My brave prince - worried about me and the kids; cooking me a special dinner tonight; ready to battle for his life.



I love you Brandon more than anything. WE will beat this. You are the strongest person I know and we will move on after this. And in 5 years we will celebrate your cancer-free status and our 10th anniversary - looking forward to the party!

Tuesday, March 16, 2010

Ouch!

Brandon had a bone marrow biopsy today....one step closer to the transplant.
The objective is to find out 100% that he is in remission.

Tough procedure!!!!
Basically, the Dr freezes his hip (deep under the skin along the bone line), then sticks a type of corkscrew into his back and twists, and pushes, and twists, and pushes....until he releases a piece of bone to pull out for testing.

Brandon was quite nervous, but with clenched teeth and a few moans he came through only slightly injured. Sore now...and probably for a few more days.

My brave prince - as always :)

Thursday, March 11, 2010

REbirthday

On Tuesday, while we were preparing to enjoy our last day in Florida, Brandon's cell phone rang. It was the transplant coordinator...
"We are calling to talk to you about something."
Heart sinks, stomach aches.
"We have identified a back-up donor for you. There is no reason to think you will need it, but just in case, we would like to have that in place."
Heart starts beating again.
"Also, we have reached the donor, and we are ready to move ahead with the transplant on March 29th or 30th."
Heart races, eyes fill with tears.

So this is it. What we have been hoping, wishing and praying for. That day has now been confirmed, the schedule of next steps at the hospital has been set.

REbirthday

For Brandon - a new immune system, potentially a new blood type, a new start, a new beginning to continue his life.

Happiness, fear, anxiety, gratitude, relief, hope, dread ---- just a few emotions that we have been feeling over the last few days.

It's hard to believe the hell that Brandon is about to enter in order to come out healthy on the other side. He is feeling so great now, so normal, that it is incomprehensible that he is willingly entering the nightmare of chemo, radiation, potential rejection, organ failure... Yet he is bravely looking forward to getting there, because the quicker he gets in, the quicker he gets out.

On March 23rd he will enter the hospital for at least a month, and we will be 'apart' again.
But the chapters in our story are moving forward, and we are getting closer and closer to 'happily ever after'.
Finally.

Fun in the Sun


Last Tuesday we got the amazing news that Brandon has a donor...


So the prince whisked his princess away to a castle in the sun...somewhere over the rainbow.


My amazing husband, in his great wisdom, decided that we needed (and deserved) a few days of relaxation - to be together, rest, and enjoy this time that he is feeling great.


Thankfully (and we are ever so grateful), Brandon's aunt and uncle (Paul and Judy) were over-generous and allowed us the luxury. They flew us to Florida, where we joined them for 4 days in South Beach.


We rested, we sunned, we walked, we people watched, we shopped, we ate, we ate, and we ate.

Most important - we were together, we rested and we were normal.


Thank you so much to Paul and Judy for this amazing gift!


Also a special thank you to 2 other people that allowed this to happen - Arlene and Joe (Brandon's parents) took on the role of nannies for the kids...who had the best time with Bubby and Papa :)


My prince is feeling wonderful! He has gained back all his weight, has a bit of a tan, and the hair is starting to fuzz. He is an amazing man with the best (most positive) attitude I have ever seen. He is my happy place (no matter where we are).

Tuesday, March 2, 2010

The Witch is on her way out! GREAT (the best) NEWS!!!

Brandon has a donor!!!

A 10/10 match!
Transplant is scheduled ASAP (as soon as the donor is ready).

We are excited, we are nervous, we are in blissful shock.....

Thank God!

Sunday, February 28, 2010

"When things are back to normal...."

Yesterday Koby got his first haircut, so we pulled out the video camera.

And I realized - Last time we used the camera was before...
before everything.

And I'll be honest, it was tough - to video happy moments, to tape Brandon bald. Not sure why. I think part of it was the desire to get past this without any visible proof that this has happened. We have taken pictures, but they were all to document the physical changes that Brandon went through and to share them with others who could not see him in person. The only other picture we took with Brandon was the one when he was skating with Dana.

So since November we have no family shots, no video. And that is sad. Because we are missing moments, missing the opportunity to capture incredible memories. Because within those memories will always be 'signs' of the horror that was going on at the same time.

The same thing happened when I was sick during my pregnancy with Koby. There are virtually no pictures of that time. I remember that Brandon once brought the camera to the hospital and wanted to take a picture. My response was "I don't want to remember this." But now we have nothing to show our son when he is older.

"When things are back to normal...."
  • we will take pictures
  • we will video the kids
  • we will go on vacation
  • we will talk about furnishing the house
  • ......

If anything, this nightmare should teach us to grab on to every moment and take full advantage of it. I do believe we are doing that - Brandon is committed to life as usual when he feels well. But I guess part of me wants this in the past, I want to forget, and I want pictures to talk of the good times, without the undercurrent of cancer in every shot.

Something for me to work on.

Sunday, February 21, 2010

My Prince

We have been getting quite a few calls asking about Brandon. People are feeling out of the loop now that my blogs are not as consistent.

Well, I am thrilled to report that there have been few blogs because we have been so busy with "real life"...to life before cancer. Chores, errands, spending time with the kids, going out for dinner, vegging in front of the TV.

Brandon has completed round 2 of chemo! It was a lot easier on him than round 1 (thank God). That was probably due to the fact that he did not start this round as sick as he was in December, the chemo was a lot less aggressive, and there was no cancer in his body (so less poison to flush).

His numbers are now back in the normal range (they dropped just like round 1), he has gained back 21 pounds (up to a whopping 176) and even his hair is starting to grow back a little. He is feeling wonderful. So great in fact, that today he headed out to Oshawa to join his regular hockey team - and even scored an assist!

As for next steps -
Unfortunately we are still waiting for that much-needed miracle --- a stem cell donor. It is a frustrating phase as we can only wait and hope that (1) someone is a match, (2) they agree to donate and (3) they follow through with the process. The team at Princess Margaret has been great, but a huge part of it is also out of their hands.

So until then, Brandon is scheduled for his next round of chemo to start in the next week.

Thanks again to everyone who remains connected and concerned and hopeful.

Our son Koby


Koby is now 16 months and is truly a "big boy".


He has learned to get around everywhere, eat on his own (somewhat) with a spoon or fork, comb his hair, ride his toy horsey (loves it) and communicate what he wants (without speaking). He is also extremely technically savvy - a future engineer - he figures out how things work, takes them apart and puts them back together (e.g., how to open the pantry, rip open the box of cereal, and dump it out for a snack).


We are still getting to know him and his wonderful personality - and boy does he have one!


In summary - Koby is GOOD.

That is the best way to describe it.


He will share everything he has (feed you his food), give you big kisses, and do ANYTHING to make you smile or laugh. As soon as he realizes that something has made you smile, he gets shear pleasure out of repeating the process.


He also has the best laugh ever! You would think there is an old man in the room - a chuckle right from the gut --- that also brings a smile to everyone around.


And so Koby gives daddy happiness medicine - a smile, a laugh, a snuggle. Medicine of the purest form that heals like nothing else.


He truly lives his name Ness (miracle).

Friday, February 12, 2010

Our daughter Dana


Dana is 3, but sometimes, when I have a conversation with her, I forget that she is not 23.


As we are going through this trauma with Brandon, I wonder how much she really understands. What is she hearing, what does she know?


Amazingly, much more than one would think.


Yesterday I sat down with her, and we had the following chat:


- Mommy, remember when we were sick and our eyes were red

[we both had pink eye at the same time]

- Yes, I remember

- And then we turned better right?

- Yes Dana, we both got better

- And then daddy turned sick?

- Yes

- We are not sick anymore, but daddy is still sick

- yes, daddy is still sick. But he is taking his medicine and getting better.

- Remember a long time ago daddy was in the hospital?

- Yes

- Remember he cried when he was in the hospital?

- Yes

- That was silly to cry because there were no needles

- You're right, that was silly

- I like daddy's nurse, and I like daddy's Dr. , the one who can't count

[the Dr would play count with her]

- I like them too Dana. They will help daddy get better.


She amazes me - with her words, her logic, her compassion, and her understanding about what's going on.

We are blessed to have her!


Wednesday, February 10, 2010

Probabilities

I just bought my lottery ticket.

I figure that if my 'healthy' 33 year-old husband (with no preconditions to cancer, who just ran a marathon) could suddenly have leukemia, why shouldn't I win the lottery.

Wish us some GOOD luck.

:)

Wednesday, February 3, 2010

Round 2 - More good than bad :)

Last week Brandon went through round 2 of chemo. Truth be told, we had no idea what to expect. We could only hope that it would be easier than round 1.

Well - I am THRILLED to say that it was much easier!! Although there was still nausea and exhaustion (and one night of vomiting), overall Brandon was able to function. And as a result, the family was able to function.

He could walk and talk and eat. He could come downstairs to sit on the couch. He could sleep at home. He could smile.

For the next 2 weeks Brandon will still have the side effects associated with the chemo - exhaustion, no immune system, potential sores and internal degrading of his stomach lining. But I feel like we are more prepared for what might happen. He will have to go to the hospital twice a week for blood tests and transfusions, and we have a nurse coming by daily to administer antibiotics.

Not a normal life, but closer to normal.

On the donor front - we wait, we pray, we drive the donor coordinator crazy with emails and phone calls.
She is hopeful, but we are inpatient (as you can understand), so we are trying to push the process forward as much as possible.

Brandon is amazing as usual - smiling, playing with the kids, and determined to beat this horrible beast!

Thanks to everyone for their continued support as we go through this. It is amazing to see that we are not forgotten as this continues.

The princess has her prince at home and he is gaining strength. We are learning more about the witch every day, and we will defeat her with our love and passion to live!

Wednesday, January 27, 2010

Day 3 (round 2)

All in all, according to Brandon, round 2 has thus far been "tolerable".
He has been heading to the hospital every morning - there they 'plug him in' and administer the chemo.

He is nauseous, very tired, and his taste buds are starting to go. On a positive note, no vomiting or mouth sores yet. Hopefully they won't appear.

It's hard to see him this way. My prince.

Yet even now he continues to inspire me (and others) with his positive attitude.
"I will beat this. There is no other option."
Damn straight!!

Monday, January 25, 2010

Round 2 - Day 1

With great trepidation, we got dressed this morning and began the seemingly long drive to the hospital. Brandon has been feeling SO great (thank God) that the now voluntary check-in at the transfusion clinic seems wrong. But it is needed, and we are both in for the full battle, so we march ahead.

The day itself was not too bad. Brandon basically sits in a recliner and they use his chest IV to transfuse the chemo into his body. At the same time he receives antibiotics and other drugs. We were there today from 9-4:30 and this schedule continues for the week.

I managed to check in with Brandon, head out to a work meeting, head back and work from the hospital. Tough but doable.

I also managed to meet with the transplant coordinator. Her job is to search the International Registry to find Brandon a match. She explained the process and was very helpful. She also shared that she is "pretty confident" that she would find Brandon a match within a couple of months. I wish she was SURE, but right now pretty confident is pretty awesome!

At about 4pm Brandon started to get nauseous and my heart dropped. I hate seeing him suffer. He has already suffered WAY too much. The 'good' news though is that it is now 9pm, and although he has been in bed since 6, he has not vomited yet - small miracles, small celebrations.

So day 1 for my prince has been ok, and I pray that this witch is a lot weaker than her older sister. And I pray that my prince is just as victorious, because I know that he is just as brave and just as determined!

Sunday, January 24, 2010

blog from Brandon

Thank you, thank you, thank you!!!



Over the past 5-6 weeks my situation has become a little bit of a storyline for family, friends, new and old as well as rekindled relationships. I'm thrilled that it is raising SOME awareness for the disease and I hope to continue building that awareness once my life is back to normal. My situation is uncharted waters for me on a few levels, the obvious being my battle with Cancer and the other (what very few know about me), is that I'm very uncomfortable being the center of attention.

With that being said, this is a blog that I wanted to make about YOU. Taly has mentioned this in her blogs in the past. But words can't express what everyone's support has meant to both my family and myself! Everyone has been incredible! You have all helped carry me through these tough times in my life. Generally speaking, I am only a cheeseball with my wife, but I love you all! You are amazing! I don't have a choice with the cards that have been dealt to me, they are what they are. All that I can do is stay positive and love every moment of life. But YOU do have a choice of how you respond to what I'm going through. You don't have to go out of your way, yet you continually do, and for that reason I say... thank you, thank you, thank you!!!

Last Day Before Round 2

As we close this chapter of our story, we smile at the preliminary happy ending...



Brandon is in remission, his spirits are up, he is feeling healthy and his appetite is ferocious - all are small (and at the same time enormous) miracles.



Brandon's spirit and courageous mindset is amazing - even to me (and I have known how amazing he is since date #1).



Today is the final day before he starts round 2 of chemo. We do not know what tomorrow holds...nausea, vomiting, headaches, fever, mouth sores.....We can only pray that the side effects will be less vicious this time around.



That being the case, Brandon wanted to make the most out of the weekend. So...



Last night my in-laws took the kids for a sleepover (thank you!) and Brandon and I went out on a date - dinner and a movie. We had a wonderful evening chatting, laughing, snuggling up together....This morning we woke up and went out for breakfast, did some grocery shopping and then met the family for a lunch. At this moment, Brandon is out with Dana for her first time skating (special daddy-Dana time).



I am so proud to have him as my husband, as the father of our children. I am the luckiest person in the world because I have him by my side.



And the Prince kissed the Princess and she smiled. And they believed that everything would be OK. because it has to be, because it should be, because they are meant to be.



END Chapter 1.

Thursday, January 21, 2010

Prince - 1 ; Evil Witch - 0

BRANDON IS IN REMISSION!!!

Bring on the transplant match!!

The search is on!

It seems that as brave and valiant as my prince continues to be, there is a need to call on some of our friends for additional support in this battle against evil.

So, a head's up to all future heroes.....

It has been confirmed that Brandon NEEDS a stem cell transplant in order to remain in remission long term. Otherwise, the cancer will return within a year.

The hospital has started a search for a donor, but unfortunately the database is still quite small and there is only a 60% chance that Brandon will find a match.

The biggest misconception seems to be the process a donor must go through if they are a match. To donate stem cells there is actually no extraction of bone...it is like donating blood!

I found these 2 Youtube videos that explain the process:

http://www.youtube.com/watch?v=Y8Bxua7-fHU&feature=related

http://www.youtube.com/watch?v=GIy2nMnuGGI&feature=related#watch-main-area

We are working with several agencies to organize targeted initiatives.

PLEASE STAY TUNED FOR UPCOMING DETAILS ABOUT DONATING!!!

Thank you to all our soldiers (and heroes) out there!

Sunday, January 17, 2010

A few days at home...

What a wonderful, awesome, dream-like wish come true to have Brandon home these past few days!

I have not written a blog - for good reason - life has been busy....with life.
Cooking, grocery shopping, playing with the kids, work, errands, cleaning up poop....
The day to day tasks that had been taken away from us so abruptly.

It's been so great having Brandon here with me, in the same room, on the same couch, in the same bed.

But I will be honest - it has also been hard. Hard because as much as we try to be 'normal', things are far from normal...
  • On Friday Brandon was nauseous all day. So we debated whether or not to go to the hospital. What does this mean? Is he just tired? Did he eat too much? Is he getting sick? Is the cancer back? So we spent the day worrying. And I spent all night watching and listening to him sleep...just to make sure.
  • Even during happy moments - Brandon will look at Koby and/or Dana and start to tear up, because there is always that fear...that thought..."I just want to see them grow up".
  • And then there is the truth that continues to loom over us all the time - there are still 2 rounds of chemo (at least)- as good as Brandon is feeling, we now know how badly he reacts to the treatment.

Brandon has been great - not surprising because he has been the greatest since the day I met him. He tries (and does) help out as much as he can, wakes up with Koby, takes Dana to school, and really focuses on making me happy (as always).

He is fighting - fighting hard! But the other truth has been introduced --- as much as he fights, as well as he does, it is all for not unless we find a transplant donor. The cancer WILL come back, within the year, and then remission will be much harder to achieve. We have started the search and now we pray that someone out there will be a match.

It is great to have Brandon home - and we are focusing on that. My friend Pamela bought me a bracelet last week engraved with some very special (and perfect) words - "Cherish the small miracles" - and that is what we are doing. Daily. Together.

Wednesday, January 13, 2010

Hospital Visit Today

After taking Dana to school today Brandon and I headed to the hospital for his big appointment.

Scheduled for 10:15, we finally went in at 2:30!

His blood tests showed the following:

Hgb - 94 - increasing steadily on their own which is great
Platelets - 522 - this is actually HIGHER than normal but the Dr. says that is ok and not an issue
WBC - 5.2 - normal

The other number that they looked at today was blast cells. Blast cells are immature white blood cells that were the indication of leukemia. When Brandon was first diagnosed the number was 155. They would like to see the number at 0, but today it was at 0.1.

Due to that number, they decided NOT to do the bone marrow test today. The Dr. was NOT concerned about the 0.1 because she said that could happen as the body corrects itself. At the same time, she does not want to check for remission because the lab will come back with "an indication of blast cells".

So we are back next week for the test.

Until then Brandon gets to stay home which is wonderful!!
As per Dr's orders - he needs to fatten up before the next round of chemo.

Tuesday, January 12, 2010

Day ???? - Who cares - he is home:)

What an amazing day for our family! A day where we appreciate every smile, every hug, every moment....

We had dinner together last night, watched some TV, went to bed together....kissed each other good night (first time in a month).

As much as I thought that it would be a peaceful sleep, I just couldn't - I kept checking on my prince - was he warm, was he covered, was he too warm, is he sleeping soundly.....

And I watched him, sleeping, breathing....next to me....at home.

This morning Brandon completed his one wish - he took Dana to school and walked her into class - proud daddy and proud daughter.

Tonight he is determined to cook me a special dinner - so now I sit while he cooks. As much as this is SO wrong, he is so excited about it!

I love him so much! And I love having him home....hearing his voice, feeling his presence, watching him....

My prince has won the first battle and he has come home to his princess and children.
We still have quite a journey to "happily ever after" but we are on our way.

Thank God!!

Monday, January 11, 2010

My Prince is home!!!!

Not much else to say...

We have a few days together until the next round of chemo.
On Weds we go in for a bone marrow test and pray for remission.

For now we are home together, enjoying each moment.

So happy!!!!!
My prince is home :)

Sunday, January 10, 2010

Day 25 (Jan 10)

Great day today - hoping we are on a pattern.
Brandon felt good and his numbers are great!

Crossing our fingers that he might come home tomorrow for a few days - can't wait to have him back where he belongs :)

Saturday, January 9, 2010

Bone Marrow Donations

Many people have asked how they might be tested to see whether they are a bone marrow match with Brandon. This is so generous and we are so appreciative!

Here is the way it works:

There are bone marrow registries all over the world where people can volunteer as donors. At this time there are about 11 million donors internationally.

If you volunteer to be a donor you can NOT specifically ask to be a donor for Brandon; you become one additional donor in the registry, and you will be called on if you are a match for anyone in the world.

We do hope that you decide to donate in any case...if not for Brandon, then for another child, mother, husband, parent that is in need at this moment.

To find out all the information, here is the Canadian site:

http://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.nsf/page/onematch?OpenDocument&CloseMenu

Thanks to all those that have offered.

Day 24 (Jan 9)

Brandon is doing great today!







We brought the kids in for a visit and Brandon was able to hold Koby and lift him up over his head, tickle Dana's back as she lay on the bed, draw some pictures together, laugh at Koby's little shtiks and give Dana a "monster hug".



After the kids left Brandon walked around the unit and took a shower.


BIG Day!!!!

Numbers are doing great:

Hgb - 86
Platelets - 128
WBC - 2.6

Dr. says he will probably come home on Monday and then return on Weds for a bone marrow test - the TRUE test to see whether or not he is in remission. We are praying to hear those words because the transplant can only be done in remission.

Please keep those prayers coming!!!!

Friday, January 8, 2010

Day 23 - mixed results and emotions

Brandon is feeling good today.
He had a few visitors which was nice....the nurse has already labeled him as a chatterbox :)

Numbers are great!
Hgb - 84
Platelets - 59!
WBC - 2.1

Normal reminder:
Hgb - 140-180
Plts - 150-400
WBC - 4-11

We walked around the unit and he stopped to chat with the nurses for a bit - now they can see how tall he really is :)

We also had some cuddle time which was selfishly amazing.

Unfortunately we did get some bad news today - Justin (Brandon's brother) is not a match for the bone marrow transplant. That would have been a great win.
But in true Brandon spirit he is refusing to think negatively as we begin the search through the International Bank. Keeping our fingers crossed and the positive thoughts coming.

Plan is to bring the kids by tomorrow for a visit - quite excited as Brandon is feeling so much better than past visits.

Hopes and spirits are high!!!

Thursday, January 7, 2010

Thank you from ALL of us

We just wanted to thank everyone who has been so wonderfully supportive to us over the last month. There are no words to express how much it means to us and how much it has helped.

Here are just a FEW examples (we apologize if we miss anybody, but thank God there are so many):

- The parents at Adath who continue to feed us on a daily basis
- The teachers and administrators who make sure Dana and Koby are ok
- Colleagues that are understanding and flexible about our current needs
- Friends who have sent over food, gifts for the children, flowers, cards, etc.
- Friends and strangers all over the world who are sending their prayers and positive energy in Brandon's direction
- Friends who have helped with errands around the house, driving me (and the kids) to places
- Neighbors who are checking in, shovelling our snow, hauling garbage bins...
- Siblings (Justin/Daph/Osy/Mark) who are visiting, babysitting, shopping, organizing, supporting
- My parents and Brandon's parents that are doing everything they can think of to make our lives easier
- All those that are posting messages, calling, emailing to offer their support and love

We thank you all!
Love
Brandon, Taly, Dana and Koby