Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, April 09, 2008

The scariest word in the world

On Monday, a young lady who is very well known in the DS community passed away. Her name is Melissa Riggio, and she is the daughter of Steve and Laura Riggio, (Steve is CEO of Barnes and Noble.) Melissa was 20 years old.

Melissa was a role model for people with Down Syndrome, and for parents of new babies who have DS and needed to see that DS doesn't have to be a bad thing. There was a National Geographic Article written about her, and she was also a singer and song writer. This week our tight-knit community is mourning the loss of this beautiful young woman.

We parents of children who have Down Syndrome learn early on that there is one word that is taboo in our vocabulary. It's the dreaded "L" word.

"L" stands for "Leukemia".

Every parent, regardless of how many chromosomes their child has, is afraid of ever hearing the word cancer used in the same sentence with their child's name. For the average child, the incidence of childhood cancer is approximately 1-2 of every 1o,ooo children.

Unfortunately for children who have Down Syndrome, approximately 1 out of every 100 will develop Leukemia. The good thing is that for some reason, children with Down Syndrome who develop Leukemia have about a 80-85% cure rate.

For every parent of a child who has Down Syndrome, unexplained fevers, painful joints, and weird rashes (petechiae) are always cause for great concern, and they make us run to the doctor for THE blood work necessary to rule out the dreaded "L" word. About 3 years ago I had such a scare with Angela. When I brought her into the pediatrician for the 5th day of an unexplained fever, lethargy, and a few spots of petechiae, I was afraid to say what I really thought it was. I said, "I don't know what's wrong, she's just going downhill really fast. Please tell me what's wrong with her." The pediatrician knew what it was I didn't want to say. "Don't'll know before you leave here if you're going home or to the oncologist." Angela didn't have Leukemia (instead a low-lying infection from a surgical wound.) but the whole episode scared me to death.

I have a lot of friends who's children HAVE been diagnosed with either ALL ( acute lymphoblastic leukemia ) or AML ( acute myeloid leukemia ). Neither of them is better than the other. If a child develops AML, they will have 6 months of intensive chemo. If a child develops ALL, they go through a THREE YEAR chemo protocol.

Somewhere along the way I was told that it's very rare for a child with DS to develop leukemia past the age of 5. Most are diagnosed between 1-4 years of age. Now that Angela is almost 12, I've pretty much let my fear of the word disappear. However in the past week not only did we loose Melissa at the age of 20, but I've been reminded of a couple other adults with DS who've lost their battles as well. But I know it's not good to live in fear, and in fact, God doesn't want us living in fear. We're to trust him, right?

And so tonight I will hug Angela a little bit longer, and a little bit tighter. Together we'll say a prayer for the Riggio family, and for others who are close to us who's children are battling that dreaded "L" as we speak. (we know several.) If you will, please add them to your prayers as well. In fact, here's a link to our friend John's site. John was diagnosed with ALL in June of 2005, and his family is counting the days until his estimated last day of treatment, August 30, 2008.


Chris said...

You are right it is not good to live in fear. God wouldn't want that, and we are to trust him. I do admit my trust does get rocked though when I see so many good families getting more than their share of the heartache. Nonetheless, I will pray for all of those families whose children are battling the dreaded "L" word as we speak. Pray that God will keep them safe, and give them the comfort they need.

Kathy said...

Leah, where do these stats come from? The 1 in 100 v 1-2 in 10,000. Is this accurate?

Leah said...

It came from one of the ped. oncology websites, and I thought I saved the link but I didn't. So I just went back to another site which gives different statistics, saying 1/1000 children will be diagnosed with leukemia by the age of 19. I think the 1/10,000 is with cancer in general, not specifically leukemia. I'm hoping one of the moms of kids with cancer will chime in and I'll correct any errors.

Leah said...

According to the National Cancer Institute, "Children with Down syndrome have increased risk for developing both ALL [7] and acute myeloid leukemia (AML),[8] with a cumulative risk for developing leukemia of approximately 2.1% by age 5 years and 2.7% by age 30 years.[9] Approximately one-half to two-thirds of the cases of acute leukemia in children with Down syndrome are ALL. Patients with ALL and Down syndrome have a lower incidence of both favorable and unfavorable cytogenetic findings and a lower incidence of T-cell phenotype.[7,9-12] While the vast majority of cases of AML in children with Down syndrome occur before the age of 4 years (median age, 1 year),[9,12] ALL in children with Down syndrome has an age distribution similar to that of ALL in non–Down syndrome children, with a median age of 3 to 4 years.[9,12] Outcome for Down syndrome children with ALL has generally been reported as poorer than that of non–Down syndrome children.[10,11,13] The lower event-free survival and overall survival for children with Down syndrome appear to be related to higher rates of treatment-related mortality, especially during induction therapy,[11,12] and to the absence of favorable biological features.[12,10] Increased occurrence of ALL is also associated with certain genetic conditions, including neurofibromatosis,[14] Shwachman syndrome,[15,16] Bloom syndrome,[17] and ataxia telangiectasia.[18]"