Wednesday, January 27, 2010
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."
Monday, January 25, 2010
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
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!!!
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
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:
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
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
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
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.
Monday, January 11, 2010
Sunday, January 10, 2010
Saturday, January 9, 2010
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.
To find out all the information, here is the Canadian site:
Thanks to all those that have offered.
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.
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
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
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
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!
Brandon, Taly, Dana and Koby
Numbers are increasing on their own which is what we want to see.
Brandon is tired today but he sat up and walked a bit which is wonderful.
One small hurdle (in the big picture) is that he has a bit of pneumonia. But they will give him medication for that.
Hgb - 88
Platelets - 26
WBC - 1.4
Wednesday, January 6, 2010
He woke up feeling good - I even got a phone call in the morning to say hi!
His brother went for a visit and they chatted away; he sat up in bed; he ate rice pudding, apple sauce, yogurt, macaroni and cheese (!); he sat up in a wheel chair for about 1/2 an hour; and he walked around a bit (first time).
I am so proud of him! Each of these things that he accomplished today (that we take for granted) is so difficult for him...each bite is a conscious decision, each step is a hurdle. But he did it!!
Because the Dr said that he might be able to come home next week for a few days before the next round of chemo!!!!!
And Brandon has made a decision:
"I want to be well enough to take Dana to school. So I am going to push myself so that when I get home I can do that."
Could I love him any more than I do? Didn't think it was possible but my prince does not cease to amaze me!
His numbers today:
Hgb - 87
Platelets - 18 - went up on their own! His body is starting to produce again!
WBC - 0.7 - went up as well!
We know that the war is far from over, that there may be some setbacks as we move forward. But today I am celebrating a GREAT DAY....because these great days are what we wished for.
Tuesday, January 5, 2010
And I am angry - angry at everything that is keeping me away from him right now:
- Dana wanted mommy to dress her and eat breakfast with her
- I had to drive Dana to school, and then she did not want me to leave
- I have to sit at home for hours while a new furnace is installed
- I have to get back to work, reach out to clients, complete projects
- Groceries need to be bought
- Errands need to be run
Please know that I love my daughter with all my heart, and I know that she needs me now more than ever, and I know she misses daddy. I am NOT angry with her AT ALL, but at the tasks that need to be completed to get her on some routine.
I also know that the furnace needs to be fixed...but why now?
I also know that I have to get back to work. I have responsibilities and clients there that are important. And we need the income. (As my boss reads this now I hope she understands)
But with all these "life responsibilities" my heart is elsewhere. It is at Princess Margaret Hospital with my husband. I know I can't be there with him all the time, but I want to be there.
And so I begin my juggling act - hospital, home, work, errands, finances, carpools, groceries, play time, bed time, mealtime.....
and it is hard.
and I am angry.
Monday, January 4, 2010
Not much change in numbers:
Hgb - 86
Plts - 26
WBC - o.3
At home, if things were not bad enough, our furnace went KAPUT last night. Out, done. It is now 9 degrees in the house!!! Thankfully Brandon's brother went into action and we should have a new furnace tomorrow. Thanks Justin!
Honestly, did we really need this now?!!?!?
Saturday, January 2, 2010
He kissed my forehead and stroked my hair.
He told me he loves me.
He told me "I will beat this".
We fell asleep together for about an hour - in each other's arms - as it should be.
Friday, January 1, 2010
In the story, the witch puts Aurora in a trance so that she pricks her finger on a spindle. She then falls into a deep sleep, and so do all the others in the palace...while they await her true love's kiss.
On the days I see Brandon struggle I wish that we can somehow coordinate this magic. Let him sleep peacefully until the witch is defeated, and let me sleep until he awakes healthy and happy.
I sit here in the hospital and watch him sleep. And once in a while a grin comes to his face. And it makes me smile. Because that is MY Brandon - smiling, happy, making the most of life.
I miss him so much. I just want him better and back home with us. I want to fast-forward to that day. But we must be patient and wait and go through all the steps and he must continue to suffer, and home life with the kids must go on without him ....
I love his sleepy grins and I can't wait for them to come in the waking hours.