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.....=(

From:  http://www.surveymonkey.com/s.aspx?sm=9mf%2buPwkhAtSxfneQUjTQw%3d%3d
September 2010 Childhood Cancer Awareness Month Surveyhttp://curechildhoodcancer.ning.com/

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 http://www.thepetitionsite.com/1/CureChildhoodCancer

3 - Join PAC2 (http://curechildhoodcancer.ning.com), 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

(http://www.stbaldricks.org)

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

(http://www.curesearch.org)

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

(https://www.alexslemonade.org)

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

(http://www.rallyfoundation.org)

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!  =)

Sunday, August 29, 2010

Finished 3rd cycle of chemo

Jason finished 3rd cycle of chemotherapy last Thursday.. Almost 3 weeks of break from now!!
His ANC (absolute neutrophil count) was low so he could only get 75% of the carboplatin.
The ANC was worse last week, only around 250.. so he could not get carboplatin at all.
This week's ANC was little bit up, a little over 500, which is still low.. that's why he only received 75% of the carboplatin.  Carboplatin is known to cause myelosuppression, causing all the blood cell counts to decrease.
Low ANC means that his white blood cell counts are low.. which means that his immune system is quite weak..therefore higher risk for infection.  Doctors warned us about any episode of fever, in which case Jason needs to come in to hospital to receive broad spectrum antibiotics.
Luckily, he's been doing fine without any signs of fever.. thank God.
Little information about low ANC and neutropenia..
Neutropenia basically means low number of neutrophils which are type of white blood cells.

Mild neutropenia (1000 <= ANC < 1500) — minimal risk of infection
Moderate neutropenia (500 <= ANC < 1000) — moderate risk of infection
Severe neutropenia (ANC < 500) — severe risk of infection

So Jason is quite severely neutropenic, which put him at a severe risk of infection... wow..but like I said.. he's been doing fine (fingers crossed).

Jason had his initial evaluation for physical therapy at the Kennedy Krieger Institute on 07/28.  They suggested that we use a brace for his right ankle/foot or serial casting to stretch his right ankle muscle which is severely tightened and curved inward.  Then we had our 1st appointment 2 weeks ago, the therapist couldn't work with Jason much since he was crying and fussing alot, going crazy....They tried to put a cast on his right leg to make the brace but couldn't do it because Jason resisted so much.. not much done..disappointed...
And last Wednesday, we went there again, this time, I went there all prepared..brought some very sedating anti-nausea medicine.. which I gave to Jason just before they put cast on him.  It worked and he slept through while they got a cast/mold of his right leg successfully so that they can now make a brace for his right ankle.. haha..
It will take about 2-3 weeks to get the brace made..(long long time!!!) then Jason will have to wear it everyday to help stretch out his tightened right ankle muscle..  But honestly, I don't know if Jason can keep it on or not..
He doesn't even tolerate socks or shoes... hew...=(
Anyways.. these are what's been happening with Jason lately...
I am kinda disappointed that physical therapist at KKI couldn't work with Jason too much..she took Jason to treatment room while I was waiting outside.. we thought that me not being in the treatment room might be better, because when I am there, Jason always comes to me crying and don't want to do anything with the therapist.  So we tried.. I waited outside, while the therapist took Jason inside the treatment room..
Result??? she came out almost right away.. because Jason was crying so much and vomited all over!! haha..
I really don't think this physical therapy thing will work out....
Oh, by the way, Jason is trying hard to stand up by himself without holding onto anything..yay! and he's been cruising along the furnitures (sofa, table etc) and trying to climb up the stairs, too.  =)

Monday, August 9, 2010

Home again

Jason's surgery went well.
The problem was malfunctioning valve.  Dr. Yaun tested the catheter inserted into Jason's brain and it worked fine, she tested the catheter that drained cerebrospinal fluid into his belly and that worked fine.. so no blockage at all any where.  She then found out that it was the programmable valve that wasn't working.  So she placed a new valve again, this time not the programmable one, but she adjusted the valve pressure to allow just right amount of CFS to drain, hopefully, so that it won't cause subdural hematoma like before and hopefully work fine this time.
We don't know why the valve stopped working but Dr. Yaun and I, all think it was the MRI from July.  The programmable shunt had magnets inside the valve that allow flow adjustment and per Dr. Yaun, this valve is supposed to be MRI compatible (MRI machine is a huge magnet so usually not compatible w/ machines with metals & magnets..) but somehow it seems like the MRI broke the valve...=(
That's why she didn't put the same valve this time, because Jason will get MRI every 3 months to monitor his tumors, and we don't want to risk valve malfunction again.
He did fine after the surgery and we came home on Sunday.
Hopefully, this time, the shunt will last for a long time without any problems or complications.

Friday, August 6, 2010

Shunt revision surgery tomorrw

I haven't posted for a while..
I was going to post about our trip to the Kennedy Krieger institute and how Jason started cruising recently..
Well, but I have to post a sad news.
Jason is back in the Childrens National Medical Center.
He was doing wonderful until this Monday when he started to retch and vomit again.  Since he was off the chemotherapy for the past 3 weeks, there was no reason for him to start retching and vomiting.  It appeared that retching and vomiting was getting a little bit worse day by day.. and yesterday, when we went back to Childrens hospital for his 3rd round of chemotherapy, I raised my concern to his doctors.  They ordered a head CT scan yesterday which showed increased fluid collection in his ventricles (worsening hydrocephalus).  The neurosurgery people came to the oncology clinic and they adjusted Jason's VP shunt setting to allow more flow/increase flow rate.  After 8 hours of long hospital visit, we came home hoping that Jason's vomiting will get better with VP shunt flow adjustment.
Well, things don't always go the way we want...=(
Last night, Jason developed severe vomiting and retching.. from around 2:00 to 3:30 am, his vomiting and retching was almost non-stop.  Finally I gave him some anti-nausea medication and he fell asleep.
This morning, he woke up vomiting and retching again.. so I knew something was definitely wrong.
So I emailed his oncologist, neuro-oncologist and neurosurgeon about what happened last night.  They immediately called me and told me to bring Jason to the emergency room.
At the ER, Jason got head CT scan again and X-ray of head, chest, abdomen.. and finally when the neurosurgery team tried to tap his VP shunt for CSF sample, they couldn't get any... meaning that Jason't VP shunt is not functioning, no flow, it's blocked!!
Dr. Yaun, Jason's neurosurgeon, came by and she scheduled an operation to repair VP shunt tomorrow morning...
I know VP shunt malfunction is a common problem, but why can't we bypass this problem???
Jason had subdural hematoma only 2 months ago because of over-shunting and now he has a blocked shunt!!!
How unlucky!...
well..I am just hoping that tomorrow's surgery will go uncomplicated.. and everything will be fixed and Jason will be fine!!
God!! please help Jason!

Thursday, July 22, 2010

Jason is pulling himself up again!

Ok..maybe the 50% dose reduction of vincristine is taking its effect..
Jason is pulling himself up again!!
Lately, he was more willing to try to stand up when assisted by mom or dad.. but on Monday.. he just grabbed the crib rail and pulled himself up!!
We all cheered for him and yes! he is proud of himself and he wants to show off more and more.. and he keeps on doing it.. haha..
His feet are still curved inside (because of tightened cord/muscle), specially the right foot.. so when he stands up, the side of his right foot is on the surface that he's standing on.. but, still a BIG progress!!  Good job Jason!  Keep up the good work!
Jason pulling himself up!
So proud of himself!! haha
Here is a video clip of Jason pulling himself up.. sorry for the tilted image in the beginning.. hahaha