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

Thursday, July 15, 2010

Great Birthday Gift!

Today is my B-day and got the greatest B-dy gift!  Good MRI result for Jason!!!   =)
Jason had his follow up MRI on Tuesday and today the result was in.
His main tumor in the brain got smaller again!  Overall about 37% decrease in the size since January when the tumor was first found!  Also his spinal metastasis got smaller a little bit.
Left side is the MRI from January 21, 2010 and the right side is Tuesday's MRI.  A lot smaller..I know that initial surgery removed some of it but the chemotherapy is working well also!
Tuesday's MRI showed smaller tumor compared to MRI from April, so chemotherapy is definitely working!
Dr. Packer said that many kids who go through the chemotherapy (same regimen as Jason's I guess..) will show significant tumor size reduction in first 10 weeks and stay stable.. but in Jason's case tumor is getting smaller a bit slowly but steadily.. so we are heading to the right direction!!!
Jason tolerated week #4 of 2nd cycle of chemotherapy well.  He will get almost 3 weeks off from chemotherapy and will begin 3rd cycle on August 5, 2010.

Jason at hematology/oncology clinic.  Between doctors' exams and chemotherapy.

Monday, July 5, 2010

Baby food Re-tried. =) was amazing..
I don't know why, all the sudden, Jason ATE (yes he ATE) 1/2 jar of stage 1 baby food!!
I had some stage 1 baby foods in the pantry just in case I get a chance to re-try them.. and today was the day.  =)
He was in a good mood today.. playing with toys and etc.  It was his evening off-feeding break time.  I gave him stage 1 pear baby food and he wanted more.. and more.. and he managed to finish 1/2 jar.. that is about 1 oz of baby food!!!  and more amazingly, he didn't throw up!!!  not even a small bit!
I think this is most amount of baby food that he ate at one time in his life.
wow.. what a surprise.
We currently trying something called Farrell bag.. which is a gastric decompressing system.  Basically, this bag/system will help relieve gas/pressure build up in stomach associate with tube feeding.  I read good things about this Farrell bag on the tube-feeding support group websites and I asked Jason's GI doctor if we can try on Jason to vent gas from his stomach and drain stomach content to see if he feels better.  Jason's GI doctor said it was ok to try.. so we are doing it.  Jason is not fed through stomach (fed through jejunum-part of small intestine) so his stomach is pretty empty but still there are gas and mucus and bile juice and stuff..
Since we tried the Farrell bag to vent and drain his stomach at night time, it seems like he's sleeping better at night.  He used to wake up at least 3-4 times retching, burping and sometimes vomiting but since the Farrell bag he only wakes up maybe 1-2 times.. and even if he retches, he doesn't vomit...
I don't know if using Farrell bag at night time helps him feel better during the day but he seems more comfortable during the daytime also..more playful and way less fussy..
Well, whatever the reason is.. Jason seems definitely more comfortable.
Hope I can feed him some baby food again tomorrow~ (fingers crossed..=D  )

Sunday, July 4, 2010

Chemotherapy cycle#2, week2

Jason tolerated his chemotherapy well on Thursday.  He continued to receive only 50% of vincristine because of concern for neuropathy that could be contributing to his inability to stand or walk.  Jason's neuro-oncologist, Dr. Packer examined Jason's vision and said Jason's peripheral vision was good now.  He said Jason's peripheral vision was compromised before per exam but now it seemed that its much improved.  Good to hear that something is improving!  =)
Jason's physical therapy will have to wait a little.  The Children's hospital's physical therapy had no appointments available for next 6 months because all the appointment slots are booked!  Jason was put on a waiting list but I didn't want to wait 6 months so I called the Kennedy Krieger Institute (KKI) which is affiliated with the Jonhs Hopkins in Baltimore.  Actually Kennedy Krieger Institute is one of the best (or might the "THE BEST") pediatric rehabilitation hospitals in the nation.  Jason was evaluated at KKI in January for his feeding issues and was supposed to be admitted for intensive feeding therapy but we found out about his brain tumor so plan for the intensive feeding therapy was canceled  (they said we can try again after brain tumor treatments are over).
Well, anyways, KKI's physical therapy department said they could see and evaluate Jason on July 28!! so I made the appointment without any hesitation.  I am actually very excited that Jason will be going to KKI for his PT!!  I hope they can help Jason walk again!  It might take a while for Jason to walk again, but I am very hopeful!  I just hope that they can accommodate more than 1 PT sessions per week.. I wish we can do 2-3 times per week..It will be a very long drive (about 1.5 hrs one way) to go to KKI but I don't mind long drive to KKI.. just want Jason to walk again soon.  =)