The Chocolate Lady

Wednesday, August 6, 2008

The day that changed my world

Today, we will go to the pool, just like we did exactly 5 years ago.

On that day, August 6, 2003, we went from splashing in the water, to driving to the hospital, in a matter of hours.

In the morning, I was in the midst of happy, laughing children, by nightfall, we were surrounded by dying children.

I will never forget my first phone call with the oncologist, confirming that Pooper had cancer, telling me it was aggressive and that he needed to be admitted immediately.

We were told to plan to stay for at least 2 weeks, maybe a month. I had no idea what I would do with Beauty. She was only 6 months old, still nursing, and she couldn’t stay with us in the hospital.

All the things that mattered in my life, were cast aside, all things except trying to save Pooper.

It’s a different world. Pediatric cancer is consuming, in many ways. The treatments are all experimental. Nobody can tell you exactly what to do, what will work, it’s a matter of finding our way, trying things, adjusting medications, monitoring for the life threatening side effects, it’s a literal tight rope of killing cells and saving cells, with no guarantees.

We were thrust into a world of total isolation, the fragile immune system of a child with cancer kept us from being around people. No more grocery stores, church (as much as you desperately need it) or other public places, our only other human contact was with the other children, bald children, frail children, children fighting similar battles, and the caring medical staff.

Nothing prepares you for the constant nausea your child will endure, the intense stomach cramping as the chemo eats away at their bodies, the burns on their bottom from the chemo in their stool and urine. To watch a healthy child wither, become weak, cry out in pain, wears on your spirit.

You go through the needles, the tests, the constant trips back and forth from the cancer clinic, the hospital and home. It’s impossible to schedule appts and times, as lab results dictate each step, when to take more, when to pull back, and Pooper’s body would be constantly fighting off infections, resulting in frequent fevers.

Each fever would mean an immediate trip to the hospital with a minimum impatient stay of 48 hours. Pooper was at risk for sepsis, a bacterial infection that could spread quickly through his body, and often led to death. Any fever required that we rush up to the emergency room.

On a whim, his temperature would rise, and I would need to find someone to care for Beauty. It was usually Grandma J, who would put everything aside, so that I could stay in the hospital with Pooper.

While my mommy friends were spending their days at gym class and playdates, I was assessing lab results and watching my child in a hospital bed.

Friends drift away, between the isolation and the depressing routine of your life, very few are able to stay by your side. But new friends are made, mostly nurses, other cancer mommies, and caring prayer warriors.

The vision of a little girl being carried into the cancer clinic, dead in her parent’s arms. Sounds of “code white” being echoed through the halls, watching crowds gather outside a hospital room to tell a child a final “goodbye”, the smell of rubbing alcohol, used to sterilize the site of a needle draw, all remain etched in my memory. My most vivid memory, is when our oncologist told us the treatment was not working, that Andrew’s prognosis was very poor. I remember looking at him on the bed, he still had his full head of blonde hair, and the thought of having to let him go was devastating.

This was our world, for more than 3 years. Even though treatment ended, the fear and anguish never completely go away.

We still have regular blood tests, a constant reminder that the cancer can come back. The visits to a plethora of specialists don’t let you forget that the effects of the chemo can go on for years. We have no guarantees, the risks are high, and we spend a lot of time keeping them in check.

We are grateful to God for healing Pooper, for restoring him, for protecting him, for allowing him to run and play again.

By all outward appearances, Pooper is perfect. Nobody would even guess that he spent much of his childhood fighting for his life. One would not imagine the incredible pain and suffering that this young boy has endured. The many scars on his chest, from 5 surgeries, are reminders of his confrontation with a formidable foe. We have not forgotten, nor can we, as the treatment that saved his life, has put him at risk for future cancers.

But we have made it to 5 years, for that we are thankful. In all honesty, we did not think we would see this day with Andrew. We never imagined that he would be here, swimming, reading, playing, laughing, driving us crazy sometimes. He has overcome so much, and we know that it was through God’s healing that we can celebrate this 5 year milestone.

And while nothing will ever be the same, many things are better because of cancer. There is little I want to miss in the lives of my children. It is not a burden to volunteer in their class, help organize their team sports, or spend time creating new experiences. These are precious gifts, memories being made that might not have been. Each birthday is a celebration of God’s mercy, each one will be special, each one is cherished.

I can go to the gym and clean my house later, but there are no guarantees on the time I have with my children.

Ill end this blog, as I have a competitive swimmer, who goes to championships this weekend, and he needs me to cheer him on at practice, oh, will I cheer!

In celebration of Pooper’s achievement of reaching this 5 year milestone, and in memory of the many friends lost…whose mommy’s can not write this post, whose mommy’s can not sit by a pool and watch their child splash and play….please consider having a virtual glass of lemonade, the link is on the side of the page…the money will be used to fund pediatric cancer research, thanks.


Di said...

Wow. Thank you so much for this post. I made me sit and take stock of my relationships with my children. Thank you.

Grandma J said...

Hey Pooper, I remember that day five years ago so well.

The one memory that stands out in my mind from that first day in the hospital, was when Mommy and Daddy left the room to talk to the Doctor and you said, "lets go to your house Mum..let's go now".

I'm sure there were moments when your mommy and daddy wished they could just take you and run away from cancer. Far away.

Thank God for answered prayers. May he continue to protect you from the harsh long term side effects. You have come so far and now you are going to swim in the Championship Meet!

Now please excuse me, I have to go refill my glass with more lemonade!

Anonymous said...

Your post brought me to tears. I'm so grateful that Pooper survived cancer and became the wonderful young man he is, who we all delight in hearing about. It's wonderful to hear how you salvaged good things from your cancer journey, like making time for who and what is truly important. What a good lesson for all of us.

Karen B.

jlo said...

Oh, BFF...I am so glad that your beautiful boy is healthy. I know I am behind on the story, but what made you go from swimming to cancer all in one day?

Thank you for reminding me how lucky I am. I will give my girls and extra hug and kiss tonight.

M, Ms. R, Mom, Auntie M, Marey said...

Our "D Day" is this month also...only it was 6 years ago...and not a day goes by that I don't think about childhood cancers...and am thankful for our kids who are SURVIVORS!

Gillian Schaadt said...

Thank you for sharing Poopers story. I still need to get my copy of Alex's Lemonade stand from you. Best of luck this weekend at the swim meet! See you soon.

Melissa Asbury said...

I have been a lurker for...gulp...well over 2 years. I started reading Poopers blog when I stumbled upon it from another caringbridge site. My very dear friends lost their 8 year old son 2 years ago this October to the beast called Cancer. I just wanted to say that I have enjoyed your post, your openness, and your honesty. I am so glad that Pooper was able to pull through and come out on the other side.
If there is one thing that Caleb ( my friends son) taught me it was to love my children every day as if it were their last. To Cherish and make new memories and that some times it is not as bad as it seems.
As I sit here with my sick 12 month old (just a double ear infection) on my beginning to show pregnant lap, I cried for Pooper, for Caleb, and for all the wonderful kids who have had to deal with something so difficult at such a young age.
I commend you the mothers and fathers and sisters and brothers as well because it puts a stress on the family and the life that will never be the same.
Thank you for this post and I promise not be a lurker forever!!!

The Running Girl said...

Powerful post. A boy at my son's elementary school was just diagnosed with ALL last week. I don't know him, but a good friend of mine does as her son and the boy are good friends. They went to see him at the hospital and said the mother seemed like she was in a fog. It's so wonderful that Pooper is able to do all that he can.

Pumpkin Delight said...

Oh my gosh, you should have warned me that I needed kleenex for this one. That is a scary and wonderful story. Thank you for sharing.

Stephanie Walker said...

Thank you for your post and the hope it has given me. My son has t-cell ALL, we are 73 weeks into a 108 protocol including high dose chemotherapy and cranial radiation.
Last year he developed shingles and a few weeks later had a stroke, but we are plodding on, desperate to get to the end of treatment and to start putting time between us and diagnosis. I hope that one day I too will be able to write a post like yours.

Good on you Pooper. You are my little hero, you give me HOPE and I am so glad beat it. :)

Cute But Psycho said...

I'm so glad your baby has been cancer-free this long. Thank GOD!

A friend of mine just lost her 8-year-old boy to cancer, just about a year after being diagnosed. I can't even imagine.

God bless you, and everyone who goes through that with their children.