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!