Wednesday, September 25, 2013

Getting our Ducks in a Row

I know, I know, it's been a while.  We've been swamped.
Scarlett got her new glasses!

They are Miraflex brand, bendable, flexible with an elastic strap around her head to help keep them on.  She has been incredibly tolerant of them, so it has been a relief!  We weren't sure we could handle yet another appliance (in addition to hearing aids, ankle braces, feeding tube and walker) that required constant parent management.  These go on and stay on for a while.  Whew!

That was, until she took off running in her walker (yea!), tripped and fell (boo!)  The glasses broke her fall, and kept her from scratching her eyes, which is part of their purpose, but sad for the brand new frames!  They're already in the shop for a touch up.

We are nearing the end of Scarlett's two week assessment period at the local school district preschool.  They have been very accommodating, and we have appreciated not having to get Scarlett the 40 miles to school through heavy traffic every morning.  

That being said, we have already begun preparing ourselves for a very intense time securing her IEP.  We feel very strongly that she needs certain elements in her school day to help her be successful, and it is looking like getting those things will not be easy.  We (primarily Chris, really) are spending our days getting updated reports, discussing issues with the current teacher, conferring with her primary teacher at the other school and meeting with all her other specialists to get our game together.  

At this point, we feel very fortunate to have a very supportive team for Scarlett - her teacher, speech therapist, physical therapist, occupational therapist and social worker all plan to attend her IEP meeting to help us make the case for the services she needs.  We have been quizzed and prepped by various people about how we will handle different issues they bring up in the meetings (we're assuming it will take several.)  We are reading up on how to be proactive, results-achieving IEP parents, and have a plan coming together.  Our goal is to maintain a good working relationship with the district (including many of my colleagues), educate a few people there on Scarlett and other kids with brain tumors, bu first and foremost get Scarlett secured with the education and services she needs.  We'd love to see this resolved quickly, with all parties satisfied...I just see that happening right now.

Luckily, we got a brief break from the paperwork and stress to go to camp!  We love our visits to Camp Arroyo, where we attend Jack's Camp, a weekend for families of brain tumor patients.  We get to go twice a year, and it is a great chance to catch up with friends, relax and learn more about life after the brain tumor.  This years camp had about 15 families, all with kids who are living after brain tumor diagnoses.  Scarlett is still the youngest.  We met several families new to this journey; it is always fascinating to me how different all of our experiences are, but how many similarities there are, too.  So many of us were told our children would die, or given such low chances for success that it is amazing to think we are all there together.

The focus this weekend was mainly on how parents help keep their stress in check.  Everyone there is living with inordinate amounts of stress, including many cases of PTSD, depression and constant grief processing.  We talked about how each of us needs to make sure we take the time to do something for ourselves, something that releases a tiny piece of that stress so that we can better focus on the task of keeping our kids alive.  Some shared that they garden, dance, listen to music or meditate.  I write, so here I am.

It's that time of the year once again - Scarlett's birthday is just a few weeks away!  Our annual blood drive is shaping up well.  Some of the details are different, but the basic goal is the same - donate blood!  If you can't make it to us, please consider giving blood when and where you can.  Cancer patients all over, in addition to accident victims and others, rely on blood donations to survive the near-deadly treatments that they hope will save their lives.  If you are lucky enough to be healthy, they need your help.  Every drop of blood that brought color back to Scarlett's tiny lips, that healed her bruises and brought her blood pressure back to normal, was donated by some fantastic, anonymous donor.

Tuesday, September 10, 2013

We're Making Progress

Can't slow her down...won't be long now.

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...
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.

Sunday, September 8, 2013

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

Friday, September 6, 2013

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.

Wednesday, September 4, 2013

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.

Monday, September 2, 2013

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.

Sunday, September 1, 2013

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'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.