"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."

Friday, September 25, 2009

Looking Back 2004 part 3

** Not sure why this posted on 9/24. It's scheduled for 9/25....Oh well...don't sweat the small things right?**

Five years ago today, September 25, 2004, our lives changed in a way that we could never have imagined. Leukemia. Not in our craziest, wildest, most horrible dream of dreams could we have imagined that leukemia would enter into our lives. Shock. Horror. Fear. Agony. A sick feeling in pits of our stomachs. Oddly enough, relief set in. Relief because now we knew. We knew that our precious little 32 month old Carly was in the place she needed to be. A place that could quite possibly cure this horrible evil leukemia. 7th floor Mott Childrens Hospital. The pediatric cancer/oncology unit.

We found out while in the ER, that indeed a virus was going around and causing this type of rash. However, Carly looked terrible on this day. Her lips were white. You couldn't even see the tiny nipples on her chest. They were completely faded away. She was in obvious pain. She had quit walking that morning. She flat out refused to even stand up.

The blood work was ordered. STAT was written on each tiny tube. It wasn't long before we had our preliminary report. Leukemia. Unclear at that time which type. They assumed and even prepared us for AML. As many of you know, AML is the most apt leukemia to strike our children born with Down syndrome. Although, that assumption would prove to be untrue.

Nothing could really have prepared us for that 7th floor. The eerie silence of being admitted to and taken by stretcher, from The University of Michigans ER, to that horribly scary 7th floor. I will never forget the strange silence as we were taken to our room. It was late at night, but still It was a very strange silence. Much different than the 5th floor at Mott - the cardiac floor.

Carly was admitted on the late evening of September 25, 2004. She was in disparate need of blood and platelets. Those were ordered. The battle began. Within two days, Carly had her broviak placed. September 28, Carly had her very first chemo. Our diagnosis of ALL came the 26th. As the doctors put it. This was the "better cancer". I couldn't and still can't figure out why anyone would say one is better than another. It was cancer for crying out loud.

The following video is something I pieced together. You'll see pictures of Carly just weeks before the evil cancer hit her. You'll see pictures of her soon after having her haircut while on the 7th floor. You will see pictures of our family, trying to carry on with live. There are pictures of Carly at her absolute most worse. That would be the time spent on the 7th floor, fighting with all her might to survive a very rare blood infection. An infection that caused her brain to swell. That infection required 8 different IV antibiotics that I had to learn how to run through her broviak. These ran all day and night. Around the clock. It was horrible. (This is the infection that left damage to her brain. The part of the brain that controls the left hand and fingers). You will also see pictures of our clinic family. The doc's and nurses who brought Carly through this. Her very last chemo infusion is also included. Along with Carly giving herself the very last dose of 6MP or also known as Mercaptopurine (oral chemo). This video is only a glimpse into our lives during those 26 months of chemotherapy.

September is National Childhood Cancer Awareness Month. Take some time and read the following facts:
  • Each day, 46 children are diagnosed with cancer
  • One in 330 children will develop cancer by age 20
  • Although cure rates are steadily increasing, 35% of children will die
  • Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined
  • The overall incidence rate for childhood cancers has increased significantly by almost 33% during the period 1975 to 2001
  • On average a treatment for childhood cancer diagnosis is two years
  • Cancer treatment can cause serious side effects that may last a lifetime
  • Research on the emotional impact of childhood cancer finds that parents and siblings report even greater long term emotional impacts than the diagnosed child
As we reach this 5 year mark. We look back and think. We made it. However, we try not to get to comfortable. As I have seen in the past 7+ years with Carly. Anything is possible. Anything, at anytime. We have learned that we have no control over what goes on. I hate that. I want to be in control, but it can not be that way. In the past 5 years, we have had to change the way we live. Life will never be as it was before cancer reared it's ugly head. This has changed each and everyone of our family members.

We once asked our oncologist when Carly would be considered 'cancer free'. Her words stung a bit. Her response was not what I wanted to have come out of her mouth. She said, "I don't like to use that phrase because once you've had cancer, you are no longer considered 'cancer free' ". OUCH! Those words really stung. However, I do see her point. Those of us who have never had a cancer diagnosis for ourselves are the ones who are cancer free. Those who have had to fight the evil beast...will carry that with them forever. Our doctor did tell us that the further we get away from the date of remission, while staying in remission is certainly a good indication that we may well be, forever done with cancer.

I must say. It is nice to be able to look back. 5 years. Wow! Unbelievable. Sometimes it seems like a life time ago. Sometimes, it seems like just yesterday.


Adrienne said...

Wow- your daughter is a fighter for sure! I was not able to watch the video- it said it was private but would love to see it if that's okay. Thanks so much for sharing your story!!

Unknown said...

Dang it! I thought I had it set to public. Anyhow, I just went in and changed the settings. Please let me know if you guys still can not view this.

Lacey said...

Love the video. I love to see her when she was younger. Cancer survivor indeed.

Stephanie said...

What a fighter! I'm glad I continued to read the story. Thank you for sharing it with us.

Kristin said...

Yay for 5 years. Here's to another 5, then another, and another....

The VW's said...

I bet this time in your life was heart-wrenching! But, you all got through and look at her now! Congrats on 5 years!!!

Jeana said...

what a difficult road your family has traveled. When we went to pick kaelyn up yesterday I realized that we walk past oncology to get to the nicu. I paused and my heart ached for the children who go through such a horrible fight. Thank you for sharing

ANewKindOfPerfect said...

Wow, what a beautiful photo show. You went through a lot. Yay for five years!

Tina said...

Your video and story has touched my heart, so many children going through so many different things and so mnay brave parents. Carly is a survivor and a brave, beautiful little girl, she has her life ahead of her, and its going to be a wonderful one. I loved the video which depicted so clearly what your family has been through. Well here's to 5 years, and the next and the next.....