Thursday, December 31, 2009

Once in a blue moon...

Once in a Blue Moon ... is a common way of saying not very often, but what exactly is a Blue Moon?

According to the popular definition, it is the second Full Moon to occur in a single calendar month. The average interval between Full Moons is about 29.5 days, whilst the length of an average month is roughly 30.5 days. This makes it very unlikely that any given month will contain two Full Moons, though it does sometimes happen.

On average, there will be 41 months that have two Full Moons in every century.

Well, tonight is actually a blue moon here in Toronto.

I'm not quite sure what that means, but maybe it's an excuse to make an extra special New Year's wish or resolution?

I know what my wish will be.

We hope that your wishes come true and that you all have a happy and HEALTHY 2010 and beyond!

Day 15 numbers and Results (Dec 31)

Well, we are now mid-way through month one of chemo (called the induction phase). Brandon has been through hell and the hope is that now he can turn the corner and start feeling a bit better (until round 2 that starts at about Day 35).

His numbers today are:
Hgb - 76 - transfusion today
Platelets - 29
WBC - 0.4

We also received results from some tests:
  1. Confirmed that there is NO leukemia in his spinal fluid (big sigh of relief)
  2. Cytogenetics test on his bone marrow shows that he is in the "average" category

What does that mean?

AML cases are divided into specific subtypes. The subtypes are divided according to the type of cell from which the leukemia cells developed and their degree of maturity. The subtype that Brandon has is M1:

M1: Acute Myeloblastic Leukemia with Minimal Maturation. The leukemia cells show minimal signs of development and granulocytic differentiation. 15% of adult AML patients are diagnosed with this subtype, which is associated with an average prognosis.

So, it's not the best news (which would probably mean no transplant required), but it's not the worst either. So here's hoping that we catch a break - after all, Brandon is FAR from average (in my unbiased opinion).

Wednesday, December 30, 2009

Blog, Pics, Posts...

I want to reach out to everyone who has been so wonderful and supportive (whether it be in errands, calls, emails, postings, prayers, or simply adding yourself to this site or the Facebook page).

Brandon and I appreciate everything from the bottom of our hearts and we thank you more than you will ever realize!

It is important for you to know that every day Brandon asks me to read him my blog, responses and emails we have received. He has said "it soothes me". So know your messages and words have power beyond the medicine he is receiving here at Princess Margaret.

Also - a word about the pics. They have caused quite a stir - but the intention was not to shock or look for pity or sympathy. It was a way to "show" what this disease can do; what it has done to my love, so that people could see how quickly it takes over and can destroy (but not defeat).

Once again - thanks to everyone, and please keep those messages coming.

Love
Taly and Brandon

Day 14 numbers (Dec 30)

Hgb - 82
Platelets - 9 - transfusion today
WBC - 0.3

Having a very tough day today. Nauseous (vomiting) and exhausted.
His hands are literally peeling off - the nurse cut off a layer of skin today.

We brought Dana in for daddy's "hair cut". She loved it! She was smiling the entire time and at the end of it she says " I made up a song. You are so handsome...."
What an amazing girl she is!
And I do agree with her - his beautiful features stand out much more and he is quite handsome with a buzz cut.

We did get some great news today - yesterday they extracted some spinal fluid from Brandon's back and the results came back negative for leukemic cells. Finally a break!

We are hoping that he starts to feel better in the next few days but this has really knocked him out...Dr. says that he really is getting many of the tougher side effects.

Hoping this is the worst that the wicked witch has to throw at my prince and from now on he will start kicking her butt!

Tuesday, December 29, 2009

Good Cop, Bad Cop

One of the toughest things about going through this with Brandon is finding my own balance between "supportive understanding partner" and "insistent, hard-assed nurse Ratchett".

On one hand I see how much he is suffering, how weak he is, how the small act of sitting up exhausts him. So I want him to rest, sleep and not do anything but let me take care of him....

On the other hand he needs to get out of bed and start walking, eat even though he doesn't want to, put eye drops in even though it is uncomfortable....

When I take on the tougher role he gets angry and upset. He becomes frustrated, plays the guilt card and even gets mean (raising voices is just something we don't do with each other). And I feel bad because the last thing he needs is anger and frustration - he is already going through so much.
Don't get me wrong - I don't take his response personally at all. I know he loves me more than anything.

But he does need to eat and get up and walk around if he is to recover properly. So if I don't say anything am I not actually doing harm? Should I not push him because that is the right thing to do? Even if I hate it? Even if I hate what it does to him? These are the moments I wish I could use the same argument I do with Dana - "because I said so, and if you don't you can't have the cookie." But that's just not going to work in this instance.

So I struggle every day to choose my moments, to gauge his mood, to balance my approach.

I just want him to fight and get better. He wants that more than anything as well. He tells me he is fighting and I believe him. But the urge to push just a bit harder is always there. And the urge to comfort and console is always there.

It is an inner struggle that I go through....and his mom goes through it with me. And we WILL do whatever it takes to get our Brandon home.

So I apologize Brandon for those moments when I get pushy, for the moments you want me out of the room....but I will do it anyway - because I love you - that much!

Sometimes words are not adequate...



Dec 26 photo - a "good" day...























Visit with the kids - Today (Dec 29)





Monday, December 28, 2009

Day 12 numbers (Dec 28)

Hgb - 81
Platelets - 26
WBC - 0.3

A little better than yesterday. Hands are not as purple and talked a bit today.

He has lost a lot of weight (not the good way). Down to 168 lbs from his October marathon weight of 189 lbs.

Hair is coming out in chunks - tomorrow is shave day....

Sunday, December 27, 2009

Day 11 numbers (Dec 27)

Hgb - 82
Platelets - 7 - need transfusion today
WBC - 0.3

Tough day today. Brandon's throat is quite blistered and he can hardly speak. He is achy and tired and pretty beaten up. No energy and no appetite. He dozes on and off. He has "had enough".

Hard to watch, harder to experience.

Saturday, December 26, 2009

Serendipity

Brandon fell asleep for a few hours today during my visit so I watched Serendipity on TV.
It's a cheesy movie, and those who know me well will not be surprised to learn that this is the channel I stopped on :)

But this movie has some significance for me and Brandon ...

The first is that New York City is one of our favorite places to visit (it was our first trip together) and we actually went to the restaurant Serendipity on one of our visits.

The second (here comes my cheesy side) is that I have always believed that Brandon and I are a real life example of Serendipity (a desirable discovery by accident). There is a similar word for this in Yiddish - Bashert (a person's soulmate, considered as predestined or ideal) - and I have always called Brandon my Bashert.

So watching this movie today in the hospital, made me a bit nostalgic about how Brandon and
I met and how we have come to where we are today...

Brandon and I actually met in 1992. I went on a trip to South Beach with my friend Leslie and one of his friends Justin. Justin was already in Florida with his family when we arrived and so we joined them for the evening in Fort Lauderdale - his mom Arlene, his dad Joe and his little brother Brandon. We hung out that night, but Brandon was more on the periphery as we were 21 and he was only 17....with a curfew.

Leslie and I remained friends and over the years I met the Grajcer family several times. I even attended Justin's beautiful wedding to Daphne. Always Brandon was the 'little brother' in the sideline.

I lived my life, Brandon lived his - I went away to school, moved to Boston to work, had several relationships....Brandon lived in different cities playing hockey and and had his own relationships.

We met again at Leslie's wedding in 2001. I was with my boyfriend at the time and Brandon was there with his girlfriend. I remember noticing that he was quite cute....and our lives continued separately.

In 2003 I came back to Toronto for a visit. A group of us went out one night (coordinated by Leslie) and Brandon was there. Ironically, I asked him that night how he would feel about being set up with my younger sister. But then, realizing his age, I promptly concluded that he was too young for my younger sister :) I must admit that this night I REALLY noticed how good looking he was...but oh so young....

In August 2005 I had plans with Leslie and his wife Melissa. Leslie asked if I minded if Brandon came along as well. Of course I did not mind. That night Brandon and I had our first conversation (every other meeting was truly small talk). We talked about movies and I mentioned that I wanted to see the Bourne Identity. About a week later, having not heard anything, I called him up to make plans. We went for Sushi and a movie and had a really nice time.

3 months later we were engaged.

6 months after that we were married.

Today we have 2 beautiful children and will be celebrating our 5th wedding anniversary.


It took us a while to get the fire started, but it has burned strong and bright since that night at dinner - August 11th 2005.

So like the movie I watched today, I believe fate has always intended for us to get together. That over the years we came together time and time again until the signs were so clear that we were each other's Bashert.

And I believe that fate would not have worked so hard, for us not to be together forever. So as I watched Brandon sleep and I felt in my heart of hearts that we will continue to live our destiny TOGETHER for decades to come.

Day 10 numbers (Dec 26)

Hgb - 85
Platelets - 11
WBC - 0.3

We are not exactly sure why the WBCs are going up as they should be approaching zero. The doctors don't seem too concerned right now but we are going to be watching that over the next few days.

Brandon had a good morning (considering).
He was able to sit up and chat for a few hours (amazing compared to closed eyes for a week) and to my great pleasure (almost made me cry) he ate 4 spoons of ice cream and 3 bites of chicken!!!

The best part - he started questioning the nurse about when can he start playing hockey again, when can he start training, will he be able to swim with his chest catheter this summer????

All amazing questions that show his fighting spirit!

I am so proud of him. He lies here in the same position for 2 weeks, his hands are purple and completely blistered, he has a rash covering his body, his tongue and throat are blistered...and he does not complain, not once about anything.

An amazing man - I am so lucky!!!

Friday, December 25, 2009

Counting Days

The tracking of days has taken on a new format...
As you know, the nurse brings in Brandon's blood numbers in the morning and writes them on the white board in his room. She also writes down the day #.

Today we are Day 9 - nine days from Day 1 of the chemo treatment.
The day numbers, they tell us, become more significant as the treatment progresses (Day 10-20 are tough due to side effects, about Day 25 we should see his blood returning to normal, Day 30-35 they repeat the bone marrow biopsy to check how successful this cycle of chemo has been...

Dec 25 numbers

Hgb - 79
Plts - 16
WBC - 0.2

Just a reminder of the normal ranges (thanks to my numbers-focused friend Tom):

Hgb - 140-180 (hemoglobin, oxygen travelling through his body)
Plts - 150-400 (clotting factor)
WBC - 4-11 (fight infection)

The goal of the chemo is to get the WBC number to zero.
The other numbers are low because the chemo impacts everything....so he is getting Hgb and Platelet transfusions as required to bring those up.

His immune system is now non-existent, so he is also on continuous antibiotics.

Unfortunately the side effects are beginning to show:
- rash on his body
- swollen burning hands that will probably peel
- sores in his throat that will probably spread through his digestive tract

Thursday, December 24, 2009

Merry Christmas...

...to all our friends celebrating today.
We wish you happiness and health!!

Love
Taly and Brandon

Wednesday, December 23, 2009

I hate this!

I really really do! I have had enough!
I miss Brandon and I want him home - now!

T0day in the hospital he did not even open his eyes for 10 seconds. He did not even have the strength to speak one sentence. Yet when I am there at least I am with him...at least there is some semblance of 'we are together'.

But then I come home and it sucks! Of course it is great to see the kids. When they are up there is reason to smile, to laugh. Today I caught Dana opening the pantry and feeding Koby Cheerios one at a time. These are my moments of joy. And they are great but...

Brandon should be here to smile with me; Brandon should be here to read Dana her story. to make Koby giggle. to make Dana her dunky egg in the morning, to veg with me on the couch and complain about shows on repeat, to warm up my feet that are always ice cold, and to go to bed with at night. He should be here to comfort me when I wake up with nightmares, and help when Koby wakes up at 3am.

This is SHIT! TOTAL SHIT!

We had a date night planned for tomorrow - just the 2 of us - dinner and a movie. Not a big deal but time for just the 2 of us to spend together. Were we asking too much?!?!?!?

I want him home, with me and the kids - like he promised he always would be.
I am angry and sad and just plain pissed off - because this is NOT FAIR!!!!!!!!

I want to rewind and change this; I want to wake up; I want it to go away and leave us alone. Because we do not deserve this - not Brandon, me or the kids.

Enough!!!!! Enough!!!!

Communications 101

In first year business school we had to take a communications class (biggest waste of time). But I do remember some basic guidelines:

  • Repetition – repeat, repeat, repeat but be honest and genuine about the meaning, substance, and relevance of your communication. Repetition is useless without genuine sincerity.
  • Use as many different communication methods as possible, and on an ongoing basis – be creative.

Based on the huge response to Brandon's illness, I think that whatever higher power is watching over us SHOULD at some point SOON say "OK, I get the message".

  • Doug (our friend in Budapest), has over 1300 Born Again Christians from all over the world praying for Brandon
  • Kate (in Vancouver) has her mom's Anglican church praying
  • Osy (my sister) has her friend praying at the Western Wall in Jerusalem
  • Osy also has other friends in Toronto synagogues praying
  • Our Rabbi at Beth Tzedec has 4000 Jews praying for Brandon
  • Over 200 of our friends and family are personally praying for Brandon's health
  • We even have a former Buddhist monk doing his part

So please please please, "fairy godmother", wherever you are, grant our wish (only one) and let Brandon beat this dragon and come home strong, healthy and moving forward.

AMEN

Dec 23 numbers

Hgb - 83
Platelets - 9 (he is getting a transfusion today)
WBC - 0.2

Tired again today but he showered in the morning.
Starting to bruise pretty badly all over his body.
Palm of his hands and bottoms of his feet are red and swollen and painful - may start to peel next.

The nurse said the next 10 days will be awful.
He's fighting but so tired...

Tuesday, December 22, 2009

Lessons from our baby

"What are Brandon's chances? What are the statistics? What's the survival rate? How likely are you to find a bone marrow match?.............."


The numbers, statistics and probabilities can drive you crazy.
And at the end of the day, what do they really mean? What does it mean for Brandon?


My response - I don't give a s--t about numbers. And here is why...

In a previous post I talked about my own illness last year. But I was not the only one going through medical trauma. Our poor baby was battling his own demons.

As routine in a high risk pregnancy (at the time they did not know about my blood disorder and what it was doing), we had a scheduled ultrasound every week.

One day (at about 5.5 months pregnant), they noticed that the fetus had a leak from his bowels; there was probably a rupture. This could mean many things (some not serious at all) and so our Dr continued to investigate. As the week went by my own symptoms got worse (heart failure, exhaustion, major water retention).

At about 27 weeks the Dr. called us in and said "Given the combination of ultrasound results and your symptoms, we are pretty sure your baby has CMV".
"What is that?"
"It is a virus that attacks the fetus and unfortunately he will be born blind, deaf and mentally disabled. You need to start thinking about what you want to do."

Brandon and I did not even have to discuss it - we will abort the fetus. But - "How sure are you?".

"I am 99% sure. And the only reason I am not saying 100% is that I am not that arrogant."

For those who know Brandon and I well enough, you know that we dealt with this in the way we deal with anything else --- This is something out of our control. We can't do anything about it, so we will deal with it....TOGETHER.

Just one final amnio test to validate these horrific findings....

On August 28 we got the following email (direct copy):

Amniotic fluid is neg for CMV on TAlly Grajcer.
I will cancel head Ultrasound for next thu
This is surprising but good news.
We need to now check out all other causes of the combination of ultrasound findings, by excluding both abnormal chromosomes and cmv, the worst causes are behind us.


There you have it.
A 1% chance that the baby would be ok. 1 percent!!!!!


When our baby was born we named him Koby Ness. Ness in Hebrew means miracle, because he truly was our miracle!

Today he is 14 months old, weighs as much as his 3-yr old sister, has the best sense of humour, is a boy in every sense (we call him bruiser) and is a loving cuddly toddler.

So I don't care what the numbers are for Brandon. They can be 80%, 50%, or even 1% - as long as he is IN that success group!

Brandon's middle name in Hebrew is Chaim, which means 'life'.

Let him take a page from his son's own journey, beat whatever odds are provided and make his name his destiny.

Thank you

Wanted to thank everyone for your notes, emails, calls and continued support.
I read the letters to Brandon today and I can see he is so happy to know everyone is thinking about us and praying for him.

Thank you for myself and the kids too for the quick food response of friends and fellow Adath parents who have organized a dinner schedule....it helps not to have to worry about meals for the kids.

Lotsaluv,
Brandon, Taly, Dana and Koby

Dec 22 Numbers

Hgb - 78 (quite low so he is getting a blood transfusion right now)
Platelets - 20 (low but expected)
WBC - 0.2

Brandon slept last night and did not throw up so that is great.
This morning he had a few bites of muffin - first food in about 1.5 weeks!!!!

Monday, December 21, 2009

Dec 21 numbers

Hgb - 83
Plts - 28
WBC - 0.3

Numbers are heading in the right direction but Brandon feels like shit - nauseous, vomiting, dizzy and can't really keep his eyes open. Tough since the Dr had indicated that he would be feeling good by now.

Staying optimistic and strong - and hating every moment!

Sunday, December 20, 2009

An inspiration ... as always

Brandon has been so exhausted that in the past 2 days he has hardly opened his eyes. When he does they are red from burst blood vessels. It would be scary except that his beautiful blue pupils still shine through.

In the midst of this exhaustion, nausea and continuous prodding by the medical staff, Brandon spoke up once today "Taly, can you get a wheelchair so that I can get out of bed and out of this room for a bit. I want to see people."

I am so proud of my prince! So inspired by his courage, by his drive! He amazes me!

2 months ago Brandon completed his first marathon; today he circled the floor in a wheelchair. I honestly could not tell you which one made me prouder.

But I am the sick one!!

Last year, between August and October, I lay sick at the hospital next door. Pregnant with Koby, the Drs could not figure out what was wrong with me. Test after test, specialist after specialist, drug after drug ... Heart failure, liver failure, ulcerated digestive tract, carrying 40 lbs of water ... All I knew was that I was in constant pain and I wanted it to stop.

Brandon was at my side every day and every night and he was my rock. Running back and forth between work, Dana and the hospital, he held our lives together. He was the only one who kept me sane - and even that started to slip at the end.

On October 8th I was so sick that a decision was reached on my behalf - our baby would be delivered at 32 weeks, because my body could no longer handle the pregnancy and the fetus would be in danger (and I could die).

So in the operating room on October 10th, Koby was delivered, surrounded by a full team to treat me and a full team to whisk Koby to Sick Kids Hospital.

Thank God everything turned out ok. Koby was strong and was home within a month. I got stronger, and after a few more months of medical care the pain stopped.

They finally figured out that I had a genetic blood disorder called HHT. This disorder can cause problems, or people could live a full life and never even know they have it. In my case, the body changes of pregnancy had triggered it.

I have no symptoms any more, but the disorder is always there and needs to be monitored.

____________

I apologize for this long story. The point really, is the unbelievable irony of everything. I am the one with the blood disorder and now Brandon has Leukemia!!!!!!!!!!! How does this even happen???

Brandon is my rock. He really is the calm strong one between the 2 of us. I count on him for everything...I count on him to be there. I need him!!!!

Fight my love!!!!!
And PLEASE, let me be the "sick" one.

Dec 20 numbers

Hgb - 82
Plts - 24
WBC - 0.5

Numbers still heading in the right direction, though the low Hgb is making him weak (they transfuse at 80).

Tough night last night (nausea and vomiting) but better than the previous!!!

The battle continues!!!

Saturday, December 19, 2009

Those numbers

Every day the nurse comes in with a piece of paper to communicate "today's numbers" and we hold our breath.

These are the blood test results.

To give the context, here are the normal ranges (and my own lame understanding of what they mean):

Hemoglobin (Hgb)- 140-180 - Red blood cell count, oxygenation of the blood
Platelets (Plts) - 150-400 (clotting factor)
***** White Blood Cells (WBC) - 4-11 - fight infection I think

The WBC count is the number that brought us down. Normal is 4-11 and Brandon's was 182 on Monday. His bone marrow is producing immature WBCs and that is the cancer. The chemo aims to kill these and bring the number to zero. The hope is that then Brandon's marrow will produce healthy cells or that a bone marrow transplant will help.


So today's numbers:

Hgb - 86 - ok
Plts - 32 - low but expected and they will give him transfusions if needed
WBC - 2.2 - YES!!!! I did not mis-type!!!!!

Celebrate the small miracles!!!!! This shows that his body is responding to the chemo.

Brandon physically feels like shit...but the white blood cells feel shittier and that's what we care about!

Keep praying for us....

Friday, December 18, 2009

I may have created some havoc....

Thank you to everyone who have responded so quickly and with so much love!!!

Just to be completely transparent, we are not really up for calls or visits (definitely not) at this time.

Brandon is really sick and for the next 3 weeks he has no immune system.

Also, he has not slept at all so my concern is that a ringing or vibrating phone will wake him as he finally dozes off.

Emails and comments to blog are great!!!

Hope you all understand.

Day 2 of chemo complete.
The wicked witch is melting.
The prince is quite injured but continuing to fight...
and the princess waits...

This blog

As I lay awake on Monday night, alone in my huge king size bed, eyes red and swollen, I felt like I had to write...to someone....to no one. Somehow these things in my head needed to get out there. And so I looked through the Internet for some chat group. But I don't want to chat, I just want to write.

A blog seemed like the perfect vehicle.

To be brutally honest - this blog is for selfish reasons only.

I am not writing to provide an update to family and friends - though I am sure the many that love Brandon will read this to find out what is going on.

I am not writing to help others going through something similar - though if it helps then that's great.

I am not writing to get sympathy or help - though I am interested in people's own thoughts and reactions.

I am not writing to chronicle things for the kids - Brandon can tell them this story himself when they are in their 40's.

So here's what you can expect - nothing. If that is harsh, then I do not apologize. Because this is for me and Brandon...and nobody else.

My plan is to write when I want/feel/need to, about what I want/feel/need to. I am sure that some days there will be many posts, other days there may be none. Some will be sad, some angry and some emotionless. I hope that the majority are happy. Brandon will write too if he ever wants to. If not, that's fine.

And that's the way it will be. Because that's what we need right now.

Don't get me wrong, we appreciate everyone's love, prayers and support. Please do not stop caring and reaching out to us. We love you and we need you.

I just don't want this blog to become something I have to keep up, I want it to remain true to my heart, and right now my heart can't make any more promises than to love my family completely.

Welcome to our fairytale.

Welcome to hell!

For those who are joining this without the background story- here is the horrible, ugly, unbelievable last few weeks....

About a month ago Brandon started feeling sick. Headaches, stomach pains, tired, coughing. He had just started a new job (different hell) so the fatigue and headaches were easily explained. The other symptoms were - well - signs of the same cold Dana and I had. But Brandon's didn't go away. His headache and cough got worse and he started throwing up nightly. He would also wake up in the middle of the night soaking wet.

Oh no! He must have a really serious flu, possibly H1N1? But even that flu disappears eventually...

We went to Montreal last weekend, went to the Habs centennial celebration on Friday night ... and on Saturday Brandon was so sick he did not get out of bed. Some birthday celebration for me!!! Ok, H1N1 is serious, so we went to a clinic. A quick look in his throat, some antibiotics and "you should be fine in a few days".

This past Monday Brandon came home in the middle of the day, exhausted. At about 4pm he asked me for the thermometer. When it read 40 degrees we decided to go to the hospital.

One blood test later and our world fell out from under us....

"Your white blood cells, which should be between 4 and 11, are 182. Usually when we see numbers like this it is a sign of..."

She was not really going to say it, was she?

Brandon beat her to the punch "cancer?"

"yes"

Not possible. This had to be a mistake, someone else's blood, an idiot technician.....millions of explanations.

But the next morning it was confirmed.

Leukemia.

Quick rush to Princess Margaret hospital, 18 tubes of blood drained from my beautiful husband, and bone marrow extracted from his hip.

Welcome to hell....your trip is about to begin.

Once upon a time...

...there was a handsome Prince named Brandon and a Princess named Taly. They married and had two beautiful children - Dana (now 3) and Koby (now 1). The family had a lovely home that was full of happiness, laughter and lots of love. They enjoyed every moment together, and looked forward to a future filled with adventure, romance and continued love.

*********

Every night I read bedtime stories to my 3 year old daughter Dana. Her favorites are the fairytales. She can name every princess and recite each of their adventures. I think she finds them comforting - the beginning, the patterns and the ending.

There are several story elements she can count on to be true...

1. They always start with "Once upon a time"
2. There is a beautiful princess and a handsome prince
3. At some point that evil witch/fairy queen shows her ugly face
4. That evil character IS defeated
5. The prince and princess come together
6. The last sentence is undoubtedly "and they lived happily ever after"

Now here I sit at Princess Margaret hospital, at 1:42 on Friday December 18th, watching my Brandon fight his own blood, and I count on these same elements to be true.

And so I will follow the rules of the game...start this story with "once upon a time", understand that the evil witch is lurking and will attack.....and believe (and wish, and pray and hope with my whole being) that the last sentence will be as it should be.