Thursday, September 23, 2010

chemotherapy cycle 4

Jason started cycle #4 of his chemotherapy last week.  Today was the 2nd week, and he tolerated well.
Mommy was sick with a cold so daddy went to the clinic together.  =)
Today, 7 times Tour de France champion and a cancer survivor Lance Armstrong came to the Children's National Medical center to visit kids with cancer... and guess what, we had a chance to talk to him and take some pictures!! =) 
Mr. Amrstrong looking at Jason

taking picture w/ Mr. Lance Armstrong

Jaon is doing much better.  Now he can walk with holding mommy/daddy's hands.  If mommy/daddy let go of his hands, he can still take about 10 steps on his own.   He has his ankle brace that he can wear.. he hates it but we will continue to try it on while he's sleeping.

This video clip was taken yesterday.. he's walking along the rail/holding the rail.  =)  Sorry for the tilted image. turn your head or turn your computer screen.  =P

This was taken on the same day.. Jason is "playing" the piano.  He loves to play the piano..soon we have to start the piano lesson! =P

Thursday, September 9, 2010

September is childhood cancer awareness month

I just took the survery.  The "Facts" below are too sad.....=(

September 2010 Childhood Cancer Awareness Month Survey

2. Thank you for participating in the Inaugural PAC2 September Childhood Cancer Awareness Survery!

Thank you for taking the survey. Sadly, all of #9 is true...

The Facts:

- chances are about 1 in 300 any child will be diagnosed with cancer before age 20

- Every day 40 to 50 children are diagnosed with cancer

- 1 in 4 of these children will die within 5 years

- 2 in 4 will survive 5 years but develop long-term, life-altering and threatening health problems

- Only 1 in 4 will survive 5 years without major problems

- There are no warning signs or unhealthy lifestyles. No regard to race, creed, color, religion, or socio-economic status.

Despite these facts, childhood cancer is considered "rare". Yet, does two classrooms of children diagnosed with cancer every school day, with one-half of a classroom dying from cancer, sound "rare"? It’s “rare” only if it’s not happening to your child. But for over 12,500 children and families in America this year, it will not be "rare". Each will discover the desperate need for increased funding specifically for kid cancer research, while enduring the most devastating experience of their lives.

When many people hear childhood cancer, they may only think of St. Jude and TV ads with cancer kids with round faces (from steroids) and bald heads (from chemo). Yet while it is a leading childhood cancer research center, St. Jude doesn't work exclusively on cancer research and treats less than 5% of all children with cancer. Or perhaps you think of the American Cancer Society and its support for childhood cancer? Unfortunately, in 2008, with $1,078 million of public support; the ACS gave only $4.2 million to childhood cancer research, less than 1/2 a penny for each dollar of support.

Nearly 90 percent of cancer kids are treated by members of the Children's Oncology Group (COG), an international consortium of over 230 hospitals and doctors working together and cooperatively sharing results. This cooperative research allows COG to improve cure rates at a faster pace than any single institution could accomplish alone.

As a nation, shouldn't we prioritize saving our children? The facts on funding suggest we don't. So your help is needed. No child should ever have to ask, "Mom and Dad, what's hospice?"

Please help us cure childhood cancer:

1 - Share this survey with family, friends, teachers, co-workers, sports teams, scouts, PTA, etc

2 - Sign & support the Cure Childhood Cancer: Raise Awareness & Funding petition at

3 - Join PAC2 (, a childhood cancer advocacy community to learn more about these issues and ways to help

4 - Donate to organizations specifically devoted to funding childhood cancer research at COG hospitals:

St. Baldricks Foundation


St. Baldrick's uses donations to volunteers who shave their heads in solidarity with kids fighting cancer to fund more childhood cancer research than any organization except the US Government.

CureSearch for Childhood Cancer


CureSearch supports the Children’s Oncology Group, the world’s premiere pediatric cancer research collaborative that treats more than 90% of all children with cancer.

Alex's Lemonade Stand Foundation


Alex’s Lemonade shares the vision of its founder and creator, Alex Scott, who at age 4 began selling lemonade to fund research into a cure for all children with cancer.

Rally Foundation for Childhood Cancer Research


Through volunteers participating in athletic events, Rally raises awareness and funds for childhood cancer research.

On behalf of the 46 kids diagnosed with cancer today, thank you. We hope the day comes soon when we can say: It's not "rare", it's EXTINCT!

Tuesday, September 7, 2010

Trip to Ocean City, MD

It's been a while since we had a vacation.  Traveling with Jason is very very challenging.  But on the Labor day weekend, we went to Ocean City, MD for 3 days, for our much needed family vacation.  Well, overall it was quite nice..we didn't get to go to the beach to play but it was fine.  We went to the boardwalk on one night and Jason tolerated quite well.  I think he actually liked the loud music and stuff.. =)

This week, we skip physical therapy at KKI because Jason has an appointment with his neurosurgeon on the same day (& same time!).  We will probably continue just 2 more weeks of physical therapy and will stop it because there aren't much done at each physical therapy session other than some advice and ideas to try at home from the therapist.  She said that there are not much to offer from her since Jason is so resistant to the therapy.  She thinks that with the brace he will get better.  If he doesn't get any better by the winter time, we can reconsider physical therapy again....=( 
By next week, Jason's ankle brace should be ready..hopefully, he can keep this thing on as supposed to.
He continues to try to stand up and he's quite active these days.  He climbs up on sofa, bed and stuff.. This morning he climbed and went up on the stairs all the way to the 2nd floor.  I think he's getting better and better... hope that his right ankle straightens out soon so he can walk again!  =)