Scarlett's Friends

Nearly two-thirds of childhood cancer survivors suffer from long-term effects, including hearing loss, vision loss, low immunity, neuropathy, inhibited growth,  chronic illness, loss of fertility, reduced cognitive function, depression and secondary cancers.

These are some of Scarlett's internet buddies.  Most have had brain tumors, like her.  Some have won their fight and are living happy lives.  Some are still in the fight.  Some are nearing the end of their battles.  Some are gone and sorely missed.  My list is getting longer every year...

• Abby N
• Abby S
• Abby Y 
• Bree
• Connor
• Faylynn
• Gaven 
• Jessie
• Keegan
• Lilee Jean 
• Lily 
• Micah
• Nathan
• Nicky 
• Phoebe
• Reese 
• Riley 
• Zac 

There are so, so many more.  We are told by the government and big cancer foundations (some colorful language in that link) that it is rare.  It is not rare when it happens to your child.  Will you tell someone else about one of these kids?  Help us fight for better treatments, longer lives and forever memories for those we have lost.

Years of Life

The effect of cancer and its treatments is often measured in Person-Years of Life Lost (PYLL).  The average age of diagnosis for prostate cancer is 68.  Since the average life span is 72 years, that is a PYLL of 4 (4 years lost of an average lifespan.)  The PYLL for breast cancer is about 11 (average age at diagnosis is 61).  The average age for diagnosis of childhood cancer is 6.  That means the PYLL for childhood cancers is 66.  66 years lost.  More from kids, like Scarlett, who are diagnosed as infants (and have higher mortality rates, thanks to treatments that are nearly as life-threatening as the cancer itself.)

The Make-a-Wish Foundation offers children with life-threatening illnesses, including cancer, a chance to be a kid again.  Each metropolitan area has its own MAW chapter, each with it's own Charity Navigator score.  Here's our local MAW of the Greater Bay Area chapter and score.

• 81% of parents observe an increased willingness by their wish kids to comply with treatment protocols.
• A combined 89% of nurses, doctors, social workers and child life specialists surveyed say they believe that the wish experience can influence wish kids’ physical health.
• 98% of parents feel the wish experience gives them the opportunity to be a “normal” family again
• 92% of volunteers feel an increased desire to give back and help someone else’s family

More Every Day

13,500 children are diagnosed with cancer every year.  36 every day.  1 in 330 Americans will be diagnosed with some kind of cancer before they are 20 years old.

The Pablove Foundation hosts annual symposiums to bring doctors and parents together for discussion on different types of issues in childhood cancers.  So far, they have done this for Wilms Tumors, Survivorship, and Brain Tumors (which we attended thanks to their travel scholarship), and soon for Acute Lymphoblastic Leukemia.  They also run the Shutterbugs program, which connects patients with professional photographers to give them a creative voice through their treatment.

National Cancer Institute

 There are many different kinds of cancer that affect children, including several types of leukemias, lymphomas, central nervous cancers (including brain tumors), neuroblastoma, Wilms tumors, hepatic, renal and reproductive system cancers.  Very few have a known genetic cause, and none have known environmental causes in children.

See what the National Cancer Institute is doing to research and cure childhood cancers...and then see what they are not doing.

It's A Fact

Cancer is the #1 disease killer of children.  Each year, cancer kills more children than cystic fibrosis, muscular dystrophy, AIDS, asthma and juvenile diabetes combined.

See the work that CURE Children' Cancer is doing to fight cancer and support families affected, and check out their score on Charity Navigator.

IEP Step 2

Scarlett is feeling great!  She seems to be recovered from last week's final chemo dose, and is picking up her energy level every day.

First day of school!

She started school again on Monday.  She had a great time, and loves her class, teacher and aides.  There are 4 other kids in her class, all with hearing loss of some kind.  She loves to climb around the classroom, sing and dance and eat her snack.  She's been so tired this week - lots of nice, long nights of sleep!
 

My classroom, ready for the first day of kindergarten!

It my my first week back at work, too.  25 Kindergarteners and me...it's an adventure, for sure.  The next few weeks will be very tiring!

On Friday, we had the second meeting in the process of developing Scarlett's Individual Education Plan (IEP).  The IEP is the document that lays out her education needs with the school district; once her third birthday arrives in October, her services transfer from the county's Regional Center to the school district.

The last meeting we had in the Spring was a get-to-know-you.  We presented all the services she isi currently getting, her needs at the time, and all the reports and evaluations that had been done so far.  Several of the people on the IEP team know a lot about Scarlett because I work with them in other capacities in our very small school district.  

Now that October is coming closer, they will go through a process to evaluate Scarlett before we decide what program will best meet her needs.   She will be evaluated for speech and language, fine and gross motor development, emotional and psychological development.  To do this, she will have to miss two weeks of her school to attend the district's preschool, where they will observe and evaluate her.  Before that, the staff from the district preschool will trek to Berkeley to observe her in her current school.

We have several concerns about this process, but we are trying to go with it as best we can.  I am worried about Scarlett being in a class of 10 kids (even with 5 adults), and about her losing ground with signing since the district class has people "who know some signs" (their words) versus her current full-time signing school-wide.  Right now, I don't see how the district class will be able to meet her needs, but I am giving them a chance to get to know her and tell us what they think they can do.  

In the end, I am really hoping to avoid a fight.  I doubt we will come to an easy compromise, but we will do our best to listen carefully and consider our options.  In late September, we will get all the reports from the district and compare them to what we have from all the specialists we have seen over the last two and a half years.  Then we have another meeting, or as many as it will take, to come to an agreement on what the district will provide.  It may be their school, it may be her current school, but it will have to be whatever Chris and I agree is in her best interest.

Now that it is September, please share the gold.  Childhood cancer awareness is critical to funding for research.  I have posts ready for several days that have facts and links to organizations that are doing fantastic things for children with cancer.  Please SHARE them.  Don't let it be a secret.

Childhood Cancer Awareness Month

To see this info graphic full size, click here.  Learn more about Alex's Lemonade Foundation, and see their stats on Charity Navigator.