littlewarriorsmom
Mouseketeer
- Joined
- Jan 21, 2009
Anyway, the two Shannons, our MAW reps, came out at the start of January to meet with Marenna. A few days before, I asked her, “If you could have any wish in the whole world, what would it be?” She said, “To be a grownup!” Not in any sentimental, “I want to grow up someday” way. As in, RIGHT NOW, she wants to be a grownup! Gimme the car keys, Mom! When I explained that they don’t have that kind of power, ooooh, did she cut her eyes at me! Like, “Yeah, they will, you just won’t let them, Mom. You never let me do anything!”
Anyway, once she got past that, she said she wanted to go to Disneyworld. She’s the youngest of four, she’s heard all about Disneyworld, even though we’ve never gone! Plus, in the hospital, other kids talked about it. She especially wants to meet the princesses, no surprise.
Her story: normal birth, happy baby. Right after her first Christmas, when she was 6 months old, she started throwing up yellow bile. Took her in to her pediatrician, who said a stomach flu was going around.
10 days later, she was still vomiting and we noticed that her belly had a bit of a bulge. Well, my eldest, my son, had intussuception (bowel obstruction) when he was about that age, necessitating emergency surgery. Oh no, what if it was that? (We wryly laugh about that now … we wish it had been that!)
Went back to the pedi. She sent us for xrays. Before I even made it home, she called my cell. Said it looked like a tumor and to immediately go to the downtown children’s hospital. Don’t go home first. Well, we wouldn’t make it back home for about 2 ½ weeks.
That night, after xrays and a CT in the ER, they admitted us to the hospital for more tests. When the elevator opened, my husband felt like he had been punched in the gut. “Oncology Floor.”
A surgical biopsy confirmed that she had bilateral Wilms’ Tumor, Stage V. (It’s not worse than stage 4, that’s just what they call it when there are tumors on both kidneys.)
Started chemo. After 6 weeks, we were told the tumors weren’t shrinking, we needed to get the surgery scheduled. They wound up removing an orange-sized tumor from one kidney and a grapefruit-sized from the other. She went from being 17 lbs to 13 lbs. But we were so grateful … the surgeon was able to leave her with ½ of one kidney and 2/3 of the other. Way more than the minimum she needed.
More chemo, for a total of 6 months. Then we were off-treatment! (There were also cardiomyopathy issues in all this, but it resolved.) For solid tumors, they don’t use the term “remission,” they say “N.E.D. – No Evidence of Disease.” Renn was NED for 1 year, 9 months. After a routine scan last spring, her oncologist called me. It was back. A recurrence.
They removed the recurrence surgically, but there was a possible tumor spill, so she needed radiation. That was followed by 6 months of high-powered chemo. Every three weeks, we went in to the hospital to stay either 4 or 6 days for the wonderful/horrible stuff.
She’s been off-treatment since November. Her last scans were then, and they were NED
. Her next scans are Feb. 17, then if all goes well, every 3 months.Her hair is growing back now, eyelashes and eyebrows have rejoined us, and her energy is super. We joke that like the radioactive spider than bit Peter Parker, her radiation and chemo have given her superpowers.
If you go to http://lovethroughaction.blogspot.com/2008/11/good-news.html you’ll see a video “collage” of this past year.
Oh, and the rest of the kids … Jackson, 12; Kaziah, 9; Lilyanne, 6. And Marenna is 3. Yep, every three years. 2 May birthdays and 2 June birthdays. The only area of my life where I’m organized!
So, bringing it back to where we are now … Renn’s MAW wish has been sent in and we’re just waiting to see if she’ll get it/when it will be.
Last Easter, before re-diagnosis:
During Treatment:
Right Now:
CAST OF CHARACTERS
Hi Marenna! 
And thank you to everyone for the warm welcome. I so glad I found these boards and this community! 
(I have been wanting to use that smiley!)
