"I wonder how this is changing us as people."

It's one of those literary statements that like "it was the best of times, it was the worst of times.".  It will stay for me forever.

Since reading it, I haven't been able to shake it.

The story is tragic.  A beautiful couple, loving each other since high school; gets married.  They have a beautiful son, Noah.  They are making a beautiful life together.

Baby number 2 is on the way, another boy, but there are complications.  He is going to be born with 1/2 of his heart.

Doctors promise surgery, the reality is not repairing what is there, but rather now, a heart transplant.  Edmonton is where they send these babies and their families, away from the support of family, friends and church.

I don't normally do this, but here is the entry they had from a couple days ago, and I can answer the question.  It will make you more compassionate, more loving, more reliant on God, more of all kinds of great things.  And I can see that like your life before Miles, you will continue to impact the world.

"I wonder how this is changing us as people"

That was the question Sam and I had last night, at the end of a very long and trying day. The results from Miles catheter test yesterday were not what we had hoped for. The pictures revealed that the coronary arteries don't supply the back side of Miles heart. As a result, the planned surgeries to repair his heart are no longer an option.

Miles needs a heart transplant.

We are still processing what we've found out. Things almost seemed simple, or at least planned, and orderly before we found out that his heart couldn't be repaired. Our surgeons and cardiologists have been very honest with us, and we know the cards are not stacked in Miles favour. There are many complicating factors, including keeping Miles alive long enough to try and find the heart he needs.

A meeting is being held Monday morning between our health team and the hospital administration to advocate for our cause. Normally heart transplants like this one take place in Edmonton, although in a couple exceptional circumstances they have been performed here at BC Children's Hospital, which has an incredibly capable, sought after and experienced team. Moving to Edmonton to wait for a heart would mean the literal end of our family financially, which we've accepted, but it would also place an incredible emotional burden on our family, especially on our precious 2 year old Noah, that right now seems unbearable. It seems we've been tossed into the middle of a continuing argument. The need for a children's heart transplant centre here in BC is urgent. You can read lots of recent articles in the Vancouver sun and Province newspapers, explaining the situation, and the roadblocks.

After the meeting on Monday, we should get a clearer picture of the road ahead. Miles should hopefully be on the official waiting list for a heart by mid week. And then we wait.

Every prayer is heard, and needed every hour of the day. Every hour Miles is with us is a gift that emphasizes the preciousness of life. Every day when the clock rolls over at 5:23 am, we celebrate that we have been entrusted with this life for another day.

Late last night, our pastor Derrick Hamre came to the hospital and dedicated Miles to Jesus. It was incredibly special time, that Sam and I are so grateful for. We appreciate your prayers so much, for our boy, our family and our every need.

To donate to this family follow this link:  

http://gogetfunding.com/project/caring-for-baby-miles

Oncology Update/LaRombashaniqua/Kent's 48th

July 4 marks a great day for me.

It's one year since my last round of chemo started.  One year away from hell.  It's been an emotional week for me--I had to meet with the Medical Oncologist.  A new Medical Oncologist.  Did I mention it's my third one since this all started.

I started with Dr. Fitzgerald.  I *loved* Dr. Fitz, she was like talking to my best girlfriend.

Then I got Dr. Coppin, who at one point took off his shirt in front of me to show me a bruise he got while biking the Myra Canyon....(mind you this was in front of Kent too....)

So, now we are onto Dr. Kotb.  When I got the call for the appointment, I asked if I could move it as it landed on Kent's birthday, I was told no.  Under NO terms would they allow me to move the appointment to September.  The next available date.

As the date drew nearer, I was getting more and more stressed about it.  Finally, I got the phone call.  They needed to move my appointment to September.  I said, no, I was told it COULDN'T be moved to September.

They decided to keep it where it was.

I asked if I needed to do lab work, the woman on the phone said no.  She did tell me it would be an hour long appointment. I asked what we'd be doing for an hour, she couldn't tell me.

The appointment wasn't an hour long.  I think they used it to catch Dr. Kotb up and get him back on time.  He was pleasant, he was thorough, it was a good appointment.

Then he said, when did you go to do your lab work?

I told him, the person booking my appointment told me I didn't have to go.  Then he checked the notes in my file, and there it was, my query about lab work, and the answer.

Nope!  Not necessary, needless to say, I was sent right to the lab.

The best part of the appointment was his description of getting to this 1 year mark.  If there was going to be a relapse, it would have happened in the first year.

Whooot!

He said that if I was clear into year 2, there were some camps that feel that I would only have to be followed to year 3.

That would be amazing.  I would love to get as far from 2012 as possible.  Not forgetting the lessons learned, but as far from chemotherapy and radiation therapy as possible.

On the work front, most days I am still feeling overwhelmed.  I am biking to and from work as much as possible so that I can sleep at night and work off the stress of the day.  In fact, Kent and I biked on Sunday this weekend a 20 km route.  It was fun, it was work and Pippin (in the basket on my handle bars) loved it.

This past weekend was Kent's 48th birthday.  We had a BBQ here with about 15 people attending.  It was fun, and for some funny reason, it didn't take me ALL day to get the food/house ready....like it did last year.