Posted by: ME | September 6, 2011

Childhood Cancer Awareness month-September

As many of you know, my oldest daughter, Ashton, had leukemia when she was young.

2 years and 10 months old to be exact. After a 2 ports, many bone marrow aspirations, many spinal taps with chemo inserted, thousands of shots and blood draws, a little hair loss, steroids and antibiotics over the course of 3 years, and many many both grumpy AND amazingly happy moments, she is all of 13 and moody- but mostly happy!

I am not going to write about the sad times, the steroid induced craziness, or the heartbreaking news and trials we went through with that.

Some parents of cancer kids come to a point where they can say that their child having cancer was a blessing. I am not one of those yet I CAN see blessings that have come from her having cancer, and I think this is what they mean. Leukemia or cancer and blessing just don’t go together.

I will tell you about some the good things and possibly even funny things that have come from her chemo journey for me in a list, not in any order.

  • Once we drew all over each other with skin crayons out of sheer boredom. If you remember that not so popular Disney movie, “Atlantis”, you can get a picture of what colors we drew all over each other since that movie was out on video. We were bored because we were put on another floor away fm the immunosuppressed kids and there was literally not much to do there. The cancer kids floor,  4 West, had a LOT to do, but even there we needed more crafts and things to do(remember, she was about 3, we kept BUSY in between lots of naps). To make it even funnier, just when we were about done making each other up, a team of oncologists and fellows walked in to update us on her stupid illness that….. oh wait, not going there today.
  • We felt the LOVE. In this world where it seems everyone has got enough on their plate to just deal with their own families and lives, people I knew and even some I did not, blessed us abundantly with cards, toys, clothes for the hospital, PRAYER, phone calls, even some money, and some time at a condo in Destin. I don’t think I will forget ANY of that. Someone even sent a “Barney” to 4 West to cheer her and her new friends up, and the thought was abundantly sweet, but this Barney was SCARY. The PR gal for Childrens had to really inspect the “Barney” before he came up. He was very purple instead of that magenta purple that Barney as we all know him, is. He was not a neat and clean type “Barney” that we all love(yes, you do, don’t even tell me you didn’t sing along when your kids were young). The kids enjoyed this version of him, and that made us all very happy anyway.
  • I learned a lot, we all did, about our Christianity and what we believed in and what we didn’t. That’s a whole book to write about though……
  • Met some of the most wonderful momma’s and daddy’s up there. UH-MAYZ-ING. One momma and I became somewhat close through our kids cancer journey and she was already a strong Christian. I called myself a weak Christian back then, but looking back, I was a strong Christian that just had a lot of questions and fears. Not going there! My friend lifted ME up on so many occasions, she was a wonderful counterpart in the trenches. I am happy to report she(and her husband too!) is a living testimony to God’s promises- and they went through a much deeper hell than we ever did. Ironically, she moved into our neighborhood in Louisiana the very same month we were moving out. I also remember another mom who said words to me right after we heard the diagnosis that still ring with me. …..

There were about 30 people, or maybe 10, in the room or outside of the hospital room, with us at the time we were told her diagnosis of leukemia. No one knew what to say except hug me. I walked out in the hall to find Paul, because he had gone off to take a walk with his dad. This mom, whose name evades me, came up to me in the hall and gave me a huge loving hug, and told me, “God only allows this trial to the best of His mothers”.  The first words out of my mouth after letting go of our hug, were , “well, He thinks WAY too much of me, then”.  We both laughed a bit through our tears. Her son had been going through chemo about 6 month by that time.

  • We loved the music therapist! Erin from Arizona was her name.  Ashton didn’t talk much the first couple weeks, except to Paul and I. Erin “woke her up”. Up until then she was probably know as the mean grumpy new kid down the hall.
  • Pediatric Oncology nurses- most of them- ROCK! Oh,It’s a high turnover job, but those who stayed with broken hearts, worked past that and just were complete Angels on earth. God bless them all.
  • Steroids- nothing like finding your 3 year old sitting at the kitchen table with a spoon and empty bowl in the middle of the night, quietly awaiting some macaroni and cheese, without even waking you to tell you. “Um, honey, how does a banana sound?” at 3 am.
  • We had the cleanest house in the neighborhood. No one could surpass  my neurotic cleaning habits back then. You REALLY could have had lunch behind my toilet and stayed healthy, maybe even IN it. EVERY day, I disinfected the bathroom, at first with bleach, and then with all natural products(live and learn, right?) because of the fumes. I then used bleach in the tub about once every week or two. NOT good for the treatment systems, but necessary for my kids health! (after rinsing and airing out)
  • Watch out Walmart basket, here comes a complete wipe down  with a Clorox wipe and dry off with an extra towel. My child was not getting sick on my watch!
  • The TIME  I spent with my kids individually, especially Ashton, we will never have again. Reading, drawing, coloring, watching movies, doing crafts- all while NOT worrying about laundry and dirty dishes because we were in the hospital. Even when were weren’tt in the hospital, except for cleanliness sake, those household things were low on the list of important. Even the time with Haley zooming around between Granny B’s and Gramps, and Children’s, was special.
  • Haley learned to walk in 4West hallways. Too cute! She was, by far, my comic relief. Always smiling and laughing. She was only one, but I could count on her for laughs after a horrid day at the hospital, which were too many. She is still just as funny, at 11.
  • Hey! We have a new day to celebrate as a family! Clinical remission day- October 14- the day after Haley’s birthday(it’s actually ON Haley’s birthday, but we didn’t want to take over a day that is HERS). She already was pushed aside for so many things due to Ashton’s illness. Haley was a very special light in my life back then, and she still is today (even on days I have to drag her out of bed to get school done, like today).
  • Ashton looked FORWARD to her bone marrow aspiration days. Crazy girl. It all had to do with pizza. Don’t get in between a girl on steroids and her pizza, even if a large needle in your hip bone and chemo insertion in to spinal fluid stands between you! (Cancer mom humor there!)
  • Ashton told me the MOST profound words about 6 months into her treatment, after a somewhat really bad, no good type day. She told me, over a bible in a Catholic adoration chapel(out of desperation for secluded prayer over a scare I had with her), “Momma, Jesus took my cancer away for you”. Huh. Um………What? “Momma, Jesus took my cancer away for you”. That was it. Picked her up, took her home and never told a soul about these bizarre words for 2 weeks. She was 3. I heard what I WANTED to hear. Yup, I am hallucinating and I will keep it to myself because no one will believe this came out of her.
  • 2 weeks later(after above incident), I decide to try it(above incident) out on Paul. He did not think I was a loon. He accepted it from that point on. Another amazing point in our journey from a man pissed at God for allowing this to happen to his child. After that, though, I WAS a nutball. How can HE just accept that and I need proof on paperwork? Again, this belongs in the book on my Christian journey. Good thing- Paul was my rock after that. He accepted it at face value and believed it for himself and me too.
  • Make a Wish and Give Kids the World. Go look them up. Enough said, I could go on and on about them for DAYS.
  • I think this may have spawned homeschooling. When she finished chemo and went to kindergarten at the local public school, I missed her like crazy, but knew to expect that. Dealt with it for 2 years. Got the itch, met the right people, pulled her out of public school, and here we are 8 years later.
  • Dr Gardner- the woman who balanced me but I didn’t realize it then so much. Ashton’s oncologist a tall, black woman from New York. Came off non chalant at times, but knows when to worry and lets me know when NOT to worry, because, you know, I am a PROFESSIONAL worrier. Or used to be. I am SURE she thought I was a nut, but that is why she balanced me so well. I would be freaking and she would tell me not to or humor me, or give it to me straight if she was worried. She may or may not have been my CHOICE, if I’d had one anyway, but God put her in our lives and I am thankful for her.
  • Being barefoot, there’s nothing like it! Ashton could never go barefoot. She kept asking over her 2.5 years of chemo, WHEN would I let her go barefoot. I told her it wasn’t me, it was the doctors and as soon as she finished chemo and had her port out, she could go barefoot. Chemo ended in March of 2003. Port came out in June 2003. So, on a summer day, immediately upon walking in the house after having surgery to get her port out, she sat by the back door and took off her shoes and socks and went outside barefoot to swing. I was cringing and laughing all at once. I kinda woulda liked her to heal before doing this, but I OBVIOUSLY did not take that into consideration when she asked me over and over. It was an amazing day.
  • 5 years off chemo, 2008. BIG Disney trip with family.
  • Survivorship-still miraculous to me! Thank you Jesus, for allowing us to keep her for a little longer, for another day, for years. Amen.

I am sure I will come up with many many more moments. I enjoyed thinking about the good stuff today. I try not to go back to the icky stuff. There is a reason she had cancer and I look forward to watching her grow up and see what God has planned for her life.

September is Childhood Cancer Awareness Month.

GOLD is the ribbon color.

Please consider donating candy to Give Kids the World Village for Halloween fun!

http://www.gktw.org/help/wishlist.asp?m=help

and here is their address:

Give Kids The World Village
210 South Bass Road
Kissimmee, FL 34746

 

Lori

 

 

 

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  1. […] Childhood Cancer Awareness month-September (lovemyimperfectlife.wordpress.com) […]


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