Saturday, November 27, 2010

Another week without chemotherapy

Jason's ANC is still hanging around below 500.  His chemotherapy is still on hold this week.
I guess the longer into the chemotherapy cycle, it is harder for his body to fully recover. =(
But we're happy that he's still doing fine.  No signs of any fever or illness!  =)

Saturday, November 20, 2010

Chemo on hold again

Last Thursday, Jason's ANC count was too low again, less than 500, meaning he's at a great risk of infection.  So he could not receive his chemotherapy.  Jason is still doing well, no fever, not sick.  Hopefully, ANC will recover next week and we can continue chemotherapy again.

Sunday, November 14, 2010

Finally started Cycle 5

Jason's blood counts finally came up for him to start cycle 5 of his chemotherapy and he tolerated the chemotherapy very well.  Hooray!
At home, though, he vomited several times on Thursday night... poor thing..but during the day, he's playing well and doing well without vomiting.  =)

Friday, November 5, 2010

Still no chemo!

Jason could not get his chemotherapy on Thursday again, due to low ANC and platelet counts.
So already two weeks behind on chemotherapy cycle#5.  His last chemotherapy (cycle #4) was on 10/07/10 and it's been more than 1 month but still his blood counts are not recovered.  =(
But thanks to God that he doesn't have a fever and is not sick.  His oncologist thinks that by next week, his blood counts should come back so he can start chemotherapy cycle #5.
He is actually doing very well.  Two days ago, I tried to make him wear his feeding pump in his mini backpack again like he used to before.  Of course, he really hated it in the beginning but he got over it and continued to wear it for almost two hours each day.  By wearing his feeding pump, I don't have to follow him around every second carrying the feeding pump.  I am like a dog on a leash!!
It also gives him more independenc..haha..=)
I will continue to make him wear it 2-3 hours a day while he's on feeding.  yay~

Thursday, November 4, 2010

Neurosurgery appointment, a good news!

So we went to see Jason's neurosurgeon, Dr. Yaun today to consult about Jason's last MRI result; a slight increase in ventricle size.
Dr. Yaun reviewed last MRI and other MRI's and CT's taken previously and she thought everything looked good.  The increase in ventricle size was only 0.5mm to about 2mm but she said this is depending on where we measure.
To her opionion, Jason's ventricle looked almost unchanged compared to the one from August, that's after his last shunt revision.  And Jason doesn't have much symptoms like non-stop vomiting or being a lot fussy, headache etc.
So she assured us that everything is ok.
She saw Jason walking for the first time today and she was very happy about it, too.
She said she would visit Jason at the oncology clinic in about 2 weeks to check on him to make sure that everything is fine.  =)

Friday, October 29, 2010

Ophthalmology appointment

Hew..today Jason had an ophthalmology appointment.  We've been going to the Children's hospital for the past 3 days! and I am really tired now.. each time it is at least 1.5 hours of driving to the hospital in the horrific DC metro morning traffic..exhausting..
Anyway, today's eye appointment was set up urgently yesterday because of Jason's MRI finding.. the increase in the ventricle size/worsening of hydrocephalus..
His neuro-oncologist wanted to make sure that increase in cranial pressure is not affecting Jason's eye nerves.  It was a long appointment.. and quite traumatic to Jason.
His eyes were dilated with eye drops and the doctors wanted to see behind his eyes to check for any swelling of the optic nerves but of course, Jason won't stay still so he was wrapped with a sheet and strapped to a bed with lots of velcros so he won't move around.  =(
He hated this so much he cried and vomited during the exam.
After going through all these trauma, at least the result is good.  No swelling of the eye nerves were found.  Eye doctors think the increase in ventricle size/worsening hydrocephalus is not causing any damages to Jason's eye nerves.. good..

Thursday, October 28, 2010

Chemotherapy cycle #5 and MRI results

I've been lazy lately and haven't updated the blog for a long time.  Sorry..=(
Anyways, Jason has been doing alright.  He had his 2 weeks break from the chemotherapy and had the routine MRI last Tuesday.
The MRI results is mixed.. his tumor is SMALLER again!! yay!! and his spinal metastasis are stable, yay!!
But his ventricle size was slightly bigger on the MRI suggesting that his VP shunt may not be working well again!! yikes!  I didn't notice too much symptoms like vomiting and fussiness but my husband feels that Jason has been a bit more fussier lately which may be contributed to inrease in ventricle/increase cranial pressure.
So we're going back to see Jason's neurosurgeon, Dr. Yaun, again next week.  Since Jason doesn't have too much symptoms, the neurosurgeon might just continue to monitor or she might want to take Jason back OR to adjust shunt valve again.. I don't know what the final decision will be.. We will know next week.
wow.. this vp shunt thing is not easy...so much problems and hard to get complete control over it.
Yesterday, Jason got a new GJ tube placed because it was leaking a lot making such a mess, staining his clothes everyday.  This time placeing the new GJ tube under the fluoroscopy was a breeze! done so fast, only took 15 minutes or so.  I really liked that.. hope this tube stays in place for a long time without causing too much trouble.
Today would have been the first day of Jason't new chemetherapy cycle (cycle#5) but Jason could not get his chemotherapy today because today's blood tests revealed that his platelet count was too low (meaning that he is at a higher risk of bleeding).  During 2 weeks of break from the chemotherapy, his blood counts supposed to bounce back and become close to normal for him to get chemotherapy again but this time for whatever reason, his blood counts didn't recover... too bad...=(
So his chemotherapy was postponsed untile next week.  Hopefully, next week, Jason's blood counts will recover for him to receive chemotherapy.

Wednesday, October 6, 2010

Sunday, October 3, 2010

Chemotherapy cycle 4, week3

Jason did well with his chemotherapy this week.
I was sick with a mild cold last week (still coughing...thought) and Jason might have gotten a mild cold from me also.. he was a bit more fussy and vomited little more this week... making us all worry again but he's getting better.
He's making more progress in terms of walking.  When I hold his hands to help him walk, he now will let his hands go and will walk about 10 steps or more on his own.  Jason likes to practice alot... hopefully, he will walk soon. =)

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

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. =)

Wow..it 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.  =)

Tuesday, June 29, 2010

Jason's weight changes

It's been almost 1 & 1/2 years since he had his first feeding tube (NG tube) and almost 1 year since he had his G-tube surgery.  Jason has gained significant weight and now his weight is more than 25th percentile.  What a change from less than 3rd percentile!

Jason at birth weighing 7 pound 10 ounces, more than 95th percentile for weight~
 Jason around 3 months old.  Still growing well gaining weight nicely!

    Jason around 4 months, still chubby and cute! weighing little over 14 lbs

After his first NG tube, 8 months old, in February2008.  He stopped gaining weight since 4-5 months old due to feeding refusal.

When he was around 1 year old.  He was so thin.. his doctor said Jason was all bones and skins.  Look at those chicken legs.  He had G-tube inserted into his stomach when he was 13 months old.  By this time, his weight was off the growth chart, below 3rd percentile.

 and now at 24 months old, weighing 27.5 lbs.  Thanks to GJ tube!


Thursday, June 24, 2010

Chemotherapy cycle #2, week 1

Today was one of the longest clinic appointment ever!! We got to the Childrens hospital at 8:00 am and left there at 4:00 pm. Almost 8 hours in the clinic/hospital today.. hew, talk about being exhausted!! So we left home around 7:00 am and came home little after 5:00 pm. The reason for such a long clinic visit was because Dr. Yaun wanted to have another CT scan before receiving today's chemotherapy. Dr. Yaun came to oncology clinic to check whether Jason's surgical wounds are healing well or not before he receivs chemotherapy. And I told her that Jason is still vomiting and retching frequently.. and Dr. Yaun was concerned because there is always a possibility that subdural hematoma can happen again. Even though last week's CT before discharge was good, she wanted to check again to make sure that it's not the recurring subdural hematoma that make Jason vomit and retch..
So arranging for CT and waiting and getting the CT scan done took about 3 hours and while CT is obtained and result is back Jason's chemotherapy was on hold.. Finally around 2:30 we got "OK" to go from Dr. Yaun and oncology clinic staff (they said CT scan looked very good!!)..So he received carboplatin and 1/2 dose vincristine today.
The oncology nurse practitioner gave us order for the physical therapy (3-5 times/week). I will have to make arrangement for this next week.. I am so tired now...3-5 sessions of physical therapy per week might sound alot but my insurance only pays for 2 consecutive months for same condition/diagnosis per calendar year (doesn't matter how many sessions, just "two consecutive months"), so I have to get the most out of it. Last time when Jason was discharged from hospital after 1st surgery, I didn't know about this policy and we wasted 1st month by missing appointments and stuff.. and only got 4 weekly sessions and even that 4 sessions, Jason didn't cooperate too much so we didn't get much done.
Maybe this time, I will go for 3 sessions per week and after 2 months, if Jason needs more time, then I will have to appeal to my insurance company for more time.
Well, with intensive physical therapy, hope Jason can walk again soon!!

Wednesday, June 23, 2010

Old video clips of Jason...

Jason at 13 months old-cleaning sister's room w/ Swifer



Jason at 15 months old-walking around w/ his feeding pump in a backpack



Jason at 17 months old -dancing!





Jason...when are you going to stand, walk and run again??? T.T
I miss those old days..please God..help Jason walk again...

Tuesday, June 15, 2010

Surgery today and maybe coming home tomorrow!

Jason was taken back to OR this morning to take out external subdural drain and put a new VP shunt in.
His subdural hematoma (blood collection) is almost gone and Dr. Yaun decided that it was safe to take out the subdural drain.  His VP shunt was replaced with a new VP shunt.. this time it is a programmable shunt.  So in case, subdural hematoma or CSF collection occurs again (unfortunately, there is always a possibility that it may happen again....) then they can adjust VP shunt's flow to help minimize subdural hematoma/fluid collection from getting larger, I think.  ^^
Anyways, today's operation went well, thanks to Dr. Yaun.  Jason came out of OR with 3 sutures.. one on the new VP shunt site, one small one from closing the subdural drain and third one on his belly (end of vp shunt).  Hopefully, these sutures will heal soon. 
Jason will have one last CT scan tomorrow morning and if this shows everything is good then he will come home tomorrow!!  yay!

Saturday, June 12, 2010

Happy 2nd Birthday Jason!

Today is Jason's 2nd birthday. Too bad that he is in the hospital on his birthday. No birthday cake, no presents, no birthday party...T.T
I sang the Happy Birthday song at Jason's bedside this morning...made me a little bit emotional and I almost cried. hehe.
Jason, let's have a big celebration on your 3rd birthday. I hope by then, you will be able to eat your birthday cake and some Miyuk-gook!!

Jason is doing alright. Last night, he was having some nausea issue and vomited and retched several times. Dr. Yaun said it might be due to increased pressure from not draining too much from his ventricles (thus increased pressure in the ventricles) but she wants to keep this way for little bit longer so that fluid & blood collection in the subdural space can be drained as much as possible. Yesterday's CT showed that this fluid/blood collection got even smaller but there are still some left. He will have another CT scan tomorrow and hopefully, it will be even smaller... then on Tuesday, Dr. Yaun will take him back to OR to finally put the VP shunt back in. If everything goes well then Jason can come home on Wednesday. =)

Thursday, June 10, 2010

Out of ICU and recovering

Jason came out of PICU yesterday afternoon and he's moved to neurosurgery ward.
He's doing alright but since he has lots of lines and specially two drains from his brain, he was put on soft restraints to prevent him from pulling these lines.. basically his wrists are tied up to crib rails only allowing little bit of movements.. and he's wearing soft arm braces so he cannot bend his elbows and reach for lines. poor baby...
Last night he woke up and acting very aggitated, wiggling, sliding, kicking etc every 1-2 hours.. of course, both of us (Jason and me) couldn't sleep well. He got morphine, tylenol and valium to help with pain and aggitation but they only helped little bit.
I asked Dr. Yaun why radiologist did't say anything back in April about small fluid collection shown on MRI.. and she said, they notified her of the finding.. but back then it was not significant to do any intervention.. so she told the oncologists/radiologist to just keep monitoring with regular MRI.. and boom! within 1 & 1/2 month it got much bigger causing problems now...
I love Dr. Yaun, Jason's neurosurgeon, she's a such a wonderful, kind and very loving/caring doctor. Always explains things in details, will go over MRIs, CTs very carefully.. she's just wonderful doctor! ^^
Dr. Yaun said Jason's subdural fluid/blood collection is almost gone, it's putting out very little drainage right now.. meanwhile, they clamped the VP shunt to block CSF from his ventricle that way, it creates pressure in the center of brain and pushes brain outward so subsequenty will help pushing the blood/fluid from subdural space.. but if this pressure goes too high then Jason will have problem so they will have to open VP shunt again..
Since Jason had rough night last night, doctors thought maybe it was because increased pressure from clamping VP shunt.. so they opened VP shunt again this morning to relieve pressure from the ventricles..but then this may cause build up of fluid again in subdural space.. so they have to monitor closely and play with clamping and opening of both VP shunt and subdural drain..
so tricky and complex..
anyways, when everything is ok, that is.. most of the fluid/blood drains out from subdural space and pressure in ventricles can be set to normal again.. then Jason will have to go back to OR to put the VP shunt back in his belly..that will be prabobly on next Monday...then hopefully he can come home...

Tuesday, June 8, 2010

Back in the hospital...another surgery...

Jason is in the Childrens National medical center again..T.T
Yesterday afternoon, he developed intractable vomiting.. Jason usually vomits at least once or twice a day so vomiting is not something new to him but yesterday, he was vomiting and retching every couple minutes..
and he was way more fussy and irritable than usual..
So we decided to take him to ER and we took him to the Childrens hospital ER because they have all the medical record.
Because of his complex medical background (brain tumor, VP shunt, chemotherapy) we could get into the exam room right away without waiting.
They did head CT to rule out VP shunt malfunction and found a fluid collection in the right subdural space (that's space kinda between outer brain and skull). They asked us if Jason recently had any head trauma (falling etc) but he didn't.. and we couldn't think of any head injury.
Later, Dr. Yaun from neurosurgery who did Jason's first 2 surgeries explained that when a vp shunt is placed to drain fluid from brain ventricle (center of brain), the pressur is relieved and the once squished brain will resume its shape and size over time.. and sometimes it can create a space in the outer brain, and cerebrospinal fluid (CSF) can build up there, and small blood vessels can pop as brain expands again, and cause some bleeding causing build up of blood and cerebrospinal fluid in that space..
She said on MRI done in April, there was a small fluid collection shown also (I guess oncologists didn't catch it or didn't think it was significant at that time?) but now the fluid collection gotten so big (3cm) pressing on to the brain causing Jason to vomit, and become more irritable and feel sick..

So, he was taken to OR this afternoon..and had a surgery to put an external drain to get rid of this old blood/fluid collection from subdural space.. also his VP shunt was externalized (taken out of his belly) so that they can control the CSF flow from the ventricle, while draining fluid from the subdural area.. I guess a delicate balance has to meet between these two spaces to minimize side effects.. Once the blood/fluid from subdural space is all drained, then doctor will put back his VP shunt into Jason's belly again.. that's another quick surgery 1 week down the road..
He did well during surgery and he's currently recovering in pediatric ICU. He will probably stay in the hospital for about 1 week..
So much for little Jason to go through..T.T
I hope this will be his last brain surgery...T.T

ps. Dr. Yaun told me that she was very impressed that his main tumor in the ventricle gotten so much smaller on today's CT scan. At least we have one good news today...

Thursday, May 27, 2010

Off chemotherapy week

This week and next week, Jason is off the chemotherapy. Next chemotherapy session is on June 10, 2010.
He's doing alright..most of the time he's in a OK mood.
He still retches time to time..I don't know if this retching and vomiting will ever go away..
Sometimes I feel that part of his retching and vomiting may be behavioral, not totally for medical reasons..Sometimes it looks like he's doing it to get attention or to get what he wants. Good example is when he's upset. When I (or my husband) step away from Jason for a little bit to do something real quick (like going to the bathroom ^^) then he will be upset and cry then he will retch and if he's not consoled right away, then he will vomit. In the oncology clinic, when he sees nurses and doctors then he gets scared and upset.. of course then he will retch and vomit.
Well, when he vomits, it's not that gross..^^ because he has now GJ tube so his formula ends up in his small intestine.. so his stomach has nothing.. but water that he drinks (he drinks too much water.. which can be a problem so we're closely watching...) and some mucus..
so that's all he vomits all the time... water and mucus.. easier to clean up and less messy ^^ but I am sure it will make him equally uncomfortable.

Jason still can't walk or stand up.. and this makes me worry so much..
We have to get the physical therapy back on board but I don't know if he can tolerate now because he didn't tolerate well before. A physical therapist from the county's EI (early intervention) comes to our house once a week but she can't do anything with Jason because Jason will not let her even come close to him.
I fear that Jason's leg muscles get even weaker and may not walk again...T.T He was such an active boy before. He started walking when he was 11 months old.. and he was going up and down the stairs and going every where.. I miss those days..

Since Jason had problems with feeding (and now his brain tumor) my family basically became the prisoners of our own home. We don't get to go out to go to church, to eat at a restaurant or to visit our friends anymore. It's quite difficult to take Jason out due to many reasons. It's been almost 2 years since we had our family vacation. Since someone has to be with Jason pretty much all the time, my hubby and I have to rotate and eat dinner at different times. We don't get much family time together since my husband works mon-fri and I work fri-sun overnight. I feel sorry for Michelle because she probably feels left out often times.
The only thing that we do as family these days is going to a nearby park/playgroud (Jason doesn't like this hahaha) or take a walk around the Rio shopping center while Jason's is off the feeding!. He's on 20hrs continuous GJ-tube feeding and he only gets 4 hours break from his feeding. 20 hours a day attached to a feeding pump! Even though he has a small protable feeding pump that we can carry around..it's not easy to do things with a child hooked up to a feeding pump..
Well.. too much venting today...
Well, Jason fell asleep now.. it's my chance to eat something for breakfast at 11:30!! finally!! I am sooo hungry!

Friday, May 21, 2010

chemotherapy cycle 1, week 4

Yesterday, Jason received the last chemotherapy for the maintenance chemotherapy cycle #1. 7 more cycles to go!!!! On the 4th week of each maintenance chemotherapy, he only receives one medication called carboplatin which is the one probably making him nauseated but good thing is that no vincristine this week! yay~
During this week, Jason tried to pull himself up many times and with mommy and daddy's help, he could stand up a few seconds holding on to the coffee table. The dose reduction with vincristine is maybe taking its effect.. yahoo~~ Since he didn't receive vincristine this week and will be off chemotherapy for next two weeks, hopefully, he can do more standing up and maybe we will try walking with holding hands together!
His oncologist recommended that we continue to massage and flex his ankles & feet and try to get the physical therapy on board again to help him with his motor problem. If Jason continues to resist with the physical therapy, doctor said then the next step to help with his motor problem will be some kind of body cast or something..I hope we don't have to go this far to make him walk again...
But for now, let's try standing up again, Jason!!!!

Thursday, May 13, 2010

chemotherapy cycle 1, day 14

This week, Jason received his cehmotherapy on Wednesday.  The hem/onc clinic was overbooked for Thursday, so they called me and asked us to come in 1 day early.  Because of possible neuropathy from vincristine, Jason continued to receive 1/2 dose of vincristine this week.  He still cannot bear weight on his legs and feet.. and cannot stand up or pull himself up at all.  Hopefully, with the dose of vincristine reduced, he will soon get better...
Last night, Jason was in a good mood =)... uncommon to be in a good mood right after the chemotherapy.. but he was quite playful and wanted to try to eat an apple that I was eating..haha..
of course, he didn't "eat" the apple, he basically tasted little bit of the apple by scraping it with his teeth.



Sunday, May 9, 2010

Ophthalmology appointment

On Friday, Jason saw Dr. Rosenberg at CNMC.  She is one of the ophthalmologists who saw Jason while he was in PICU.  Because Jason's main tumor is located behind the optic chiasm (I think this is the part of the brain where the eye nerves cross), initially, doctors suspected that his vision might be impaired.  However, ophthalmologists concluded that his vision was still good and his optic nerves are still healthy.
Friday's follow up with the ophthalmologist was due to his droopy eye lid while on vincristine.  Jason's neuro-oncology team wanted to make sure that Jason is not suffering any optic nerve damages from vincristine.  The result was good, Dr. Rosenberg said, Jason's optic nerves still looked healthy and everything looked ok.  His droopy eye lid got better since he was off from vincristine for 2 weeks.
We just need to continue to monitor Jason's eyes for any problems and follow up in 6 weeks for another check up.

Friday, May 7, 2010

Maintenance chemo cycle 1, day 7

Jason received his chemotherapy today as scheduled.
Jason always gets very irritable whenever we go to the clinic for chemotherapy.  It's understandable.. nobody likes to be poked to give up blood... nobody likes to be squeezed repeatedly to get blood pressure..but Jason is a bit too extreme...
The moment that we got out of parking garage to go on to the elevator to get into the hospital.. he threw a fit and cried like crazy... and then of course, threw up lots of mucus and water... messing up his t-shirt and stroller even before we get to the clinic...
While I checked in at the clinic, took care of the paper works and pay co-pay, Jason cried and cried loudly... It seems like he's the only child in the whole hem/onc clinic who cries all the time..
The whole time we were there, almost 4 hours.. he was very fussy, crying, didn't want anyone to touch or examine him.
I had to hold him most of the time...tiring...=(

Today, Jason received only 1/2 dose of one of the chemo drugs, vincristine because he might be having yet another side effect from this horrible drug.  Recently, Jason is more and more UNWILLING to stand up or pull himself up...of course, he still cannot walk at all....It appears that he cannot bear weight on both feet.  Also his ankles are somewhat bent outward and when we try to bend them inward, he cries.. he absolutely hates it, possibly having pain... and the muscles around ankle/feet are tight and tense...

One of the side effects of vincristine is peripheral neuropathy...that is nerve pain...also it can cause foot drop and/or wrist drop. So after discussing Jason's symptoms with the nurse practitioner and oncologist, the team decided to reduce the dose of vincristine by 1/2.  They also recommended that we continue to flex his ankle multiple times daily...(I know, he will hate it and cry)... they said it could be from him not moving around and laying in bed, so the muscles don't get used and get tight or something...
Anyways, we will see if he will get better with reduced vincristine dose....




















This plant is called vinca rosea, commonly called periwinkle... this is the plant the chemodrug vincristine comes from.  I searched google for images and found this beautiful picture..
Aren't they so pretty??

Sunday, May 2, 2010

Prescriptions for mommy

Some prescriptions that I need...

Rx.     Faith/Strength DS (160mg/800mg)
          Sig.  1T qam & qhs to get through this journey with Jason's tumor
          Qty:  dispense 180, Refill: prn
          ---> take 1 tablet everyday in the morning and at bedtime to get through this fight with brain tumor

Rx     Deep Breath MDI HFA
         Sig.  1 puff q2h prn to relieve severe frustration and to keep your sanity.
         Qyt: dispense 3 canisters,  Refill:  prn
         ----> Inhale 1 puff every 2 hours as needed to relieve severe frustration and to keep your sanity.

Rx   Crying cream 0.1%
        Sig.  UAD sparingly for excessive sadness
        Qty. dispense 1 tube, Refill:  prn
        ---> Use as directed sparingly for excessive sadness

Rx  Laughing capsules 100mg
      Sig.  1C prn to brighten your day.
      Qty.  dispense #100  Refill:  prn
      --->Take 1 capsule as needed to brighten your day.

Rx.  Hope transdermal patch  50mcg/24hrs
       Sig.  Apply one patch near the heart q7d.
       Qty.  dispnese 3 boxes of 4 patches, Refill:  prn
        --->Apply one patch near the heart every 7 days.

hahaha...=D  It's fun to make up these things.

    

Friday, April 30, 2010

MRI result and maintenance chemotherapy cycle #1

So today Jason went back to the Childrens National medical center hematology/oncolgy clinic for his maintenance chemotherapy cycle #1 (day 0).  Today Dr. Packer showed us the MRI scan and explained the final result of MRI.  The result is good.  Contrary to what they previously thought, the metastasis on his spine is same as before, NOT WORSE, it is stable.  And he confirmed that the main tumor in his brain ventricle got much smaller.  So we were all happy!!  =)
So no changes in his chemotherapy regimen, no addition of Gleevec.  Jason will be continued on vincristine and carboplatin weekly. 


Jason received scheduled chemotherapy today.  Today Jason's daddy came along with us.  Making mommy's job much easier!!  =)  He cried alot (as usual) and threw up & messed up his clothes (as usual) and was very fussy toward all the nurses and doctors (as usual) but managed to receive his chemotherapy without any problems.











Daddy and Jason waiting for his chemo drugs...











Still waiting..
We left home little bit after 8:00 am and came back home around 2:30 pm..
Usually 2-2.5 hrs driving to and from hospital, 3-4 hours in the clinic...
Chemotherapy days is a very tiring day...

Saturday, April 24, 2010

Good news & Bad news... MRI result

So, I talked to Dr. Packer on Friday about Jason's MRI result.
He said the final report from the senior radiologist is not available yet.. but from what doctors see on the MRI, Jason's tumor in the brain got smaller.  I forgot to ask how much smaller.. duh...I will have to ask Dr. Packer again this Thursday how much of it got smaller...
I was happy to hear that it got smaller but of course, there was a draw back... the metastasis on his spinal cord appeared to be worsened...=(   exact details will be asked this Thursday again...
but if the tumors on the spinal cord got worse then doctor said he would add another drug to his current chemotherapy.  The drug is called Gleevec which is usually used for a type of leukemia...but there are some studies showing that it might have favorable effects on brain tumor too.
We will know more details on Thursday once the final MRI report is available...

Some pictures of Jason...
The other day I gave him a lollipop!! haha.. what kind of mother would give her 22 month old baby a lollipop!  =)
but I would give him anything if he is willing to take anything by mouth!











He had the lollipop in his mouth for maybe less than 1 minute.. and didn't want it any more.


Bonus picture!
Jason right after he woke up from sedation for his MRI.












He has a pretty big bald spot on his side.. that's where he had a big incision for his brain surgery...

Tuesday, April 20, 2010

MRI

Jason will have MRI of his brain and spine tomorrow.
He's currently NPO (nothing by mouth) because he will go under anesthesia for the MRI.
I feel kind of nervous...but hoping for the best...
His MRI appointment is at 09:00 am and we need to be at the Children's national medical center at least by 08:00 am.
Considering the horrible morning traffic, I think we have to leave the house around 06:00 am.
It's going to be a long day tomorrow....
Well, I'd better sleep now.  =D

Monday, April 19, 2010

Chemotherapy side effects

Too many posts on one day!!! haha  but I want to keep going until most recent issues and updates are posted.
So far the side effects from his chemotherapy are still bearable.
Most uncomfortable side effect is vomiting.  He gets his chemotherapy every Thursday and he receives a dose of iv Zofran before he gets his chemotherapy at the clinic.  He is usually ok on that day.. but starting Friday evening, things will turn really bad!! He will start vomiting severely around Friday evening and it will continue until Sunday... by Monday he is much better.  Only thing that seems to help him is to give him Zofran aroud the clock (every 6 hours) at home from Friday to Sunday... and yet I still have to do at least 1 load of laundry everyday to wash his clothings and bed linens that are soiled with his vomit.. yuck!

Another side effect from the chemotherapy is the drooping of eye lids.

Look at his left eye lid..it is definitely drooping.. and maybe his iris is a little bit deviated upward.... I took some pictures of his eyes so that I can show to his neuro-oncologist.  He said it was due to one of the chemo drug, vincristine.  This side effect is related to drug's effect on the cranial nerve... we have to watch out for worsening of this condition because if this gets worse then there might be other cranial nerve involvement also and we might have to stop vincristine... Dr. Packer (Jason's neuro-oncologist, who is a world renowned neuro-oncologist who started the standard chemotherapy regimen for brain tumor-vincristine + carboplatin) said this side effect won't be permanent (thank God!) but may take a while to return to normal.... hew..

Hair loss is another side effect...
before hair loss...
and then after the hair loss
see the difference in his mid-line???  At around 4-5 weeks into his chemotherapy, his hair loss was so bad that chunks of fallen hair was everywhere and I needed to constantly pick them up using a lint-roller to avoid hairs getting into his mouth ..I almost thought he would soon become bald.. but thankfully, his hair loss slowed down...

Lastly, his blood count... specially his hemoglobin level is so low.. basically he is very, very anemic.  Well it was low when he was discharged from the hospital because of surgery and so much blood draw during hospitalization.. and with chemotherapy which cause myelosuppression, his hemoglobin count is not recovering well...
His last hemoglobin count was around 8.7 or so... normal level being between 13-17 something like that... usually doctors consider a transfusion if hemoglobin level goes down below 8.  So I am just hoping that his hemoglobin level will not go down any further....
And of course, his white blood cell count...it was relatively ok until last chemotherapy session where his ANC (absolute neutrophil count) went down below 500  meaning that his white blood cells were wiped out by his chemotherapy... they did manual differential for ANC again which showed little bit better count so he received his chemotherapy... so we have to be EXTRA careful with him not to catch any nasty bugs... with low white blood cell count, your immune system is very weak and you can easily catch infections...
so wash your hands well and cover your coughs around Jason!!  =)

Chemotherapy

Jason was started on chemotherapy while he was still in the hospital.  The doctors said the chemotherapy had to be started within 1 month of diagnosis of the brain tumor.  His chemotherapy regimen is consisted of two drugs:  vincristine and carboplatin.  After 1st chemotherapy in the hospital, we continued to go back to the Children's national medical center every week to receive his chemotherapy.  Even though carboplatin is moderately emetogenic and vincristine almost non-emetogenic, Jason's vomiting was really bad, BAD after each chemotherapy session.  I had to give him Zofran to keep him more comfortable but he continued to vomit a lot.  His weight gain stopped (he lost a lot of weight while in the hospital) and his vomiting was really gotten out of control, so we decided to change his G-tube to GJ (gastrojejunal) tube.  GJ tube is a longer tube that goes all the way down to part of his small intestine so he cannot vomit formula.  Well, but in Jason's case, he continued to vomit stomach juice & mucus and retched really bad all the time causing his GJ tube to dislocate and migrate up to his stomach.  It happened twice and 2nd time when it happended, his GJ tube came out of his mouth!, that's how bad his vomiting & retching was.  Within one month period of time, we had to go to interventional radiology 3 times to put his GJ tube in!!  and everytime it is a nightmare!.  Jason is strapped down on a wooden board screaming while the radiologist inserted GJ tube under fluoroscopy.. without sedation!!  It is a total trauma for Jason and me!
Last week, Jason finished 10 week course of intensive induction chemotherapy.  He is enjoying 2 weeks break from the chemotherapy now.  =)  After 2 weeks of break, Jason will be started on the maintenance chemotherapy.  Each cycle will be 4 weeks of weekly chemotherapy then 2 weeks off; Jason will go through 8 cycles of it, which will last 1 year!!!
This Tuesday April 20, 2010, Jason will have his MRI of brain and spine to see if 10 weeks of chemotherapy helped to shrink his tumors or not. 
Please pray for him.

Background - after brain tumor

It was around October 2009 when I felt something was not normal. He started to fall down alot and his walking became very wobbly and unsteady. Initially, we thought it was one of the medication he was taking that made him to walk wobbly. However, his walking became more wobbly and unsteady even with stopping the medication. He became more fussy and appeared tired more, wanting to lie down more. At the same time, I realized his head size had gotten so much bigger. All these doctor's appointments, they measured his head and noticed his head was getting bigger but none of doctors noticed something wrong with it. They probably thought that his brain was growing with good nutrition that he was getting through the G-tube. Well, we all thought that way...

By December 2009, his worsening symptoms made me worried enough to start thinking about hydrocephalus which is a condition that water accumulates in the brain ventricles causing many problems that are similar to problems that Jason had. On January 20, 2010, I took Jason to his pediatrician and discussed my concerns, specially about possible hydrocephalus. Jason's pediatrician ordered CT scan of the brain on the same day and later that day we found out that Jason had a 4cm brain tumor in his 3rd ventricle of his brain and that was causing severe hydrocephalus. Jason's pediatrician quickly made appointment with a neurosurgeon at the Children's National medical center. Next day, on January 21, 2010 after seeing the neurosurgeon, Jason was immediately admitted to the PICU (pediatric ICU). Everything happened so quickly from that day...They found that his tumor was already spread to his spinal cord and these little tumors on the spinal cord were inoperable due to their location and being so many. He had open brain surgery to partially remove his tumor in the brain and get enough tissue samples for biopsy to find out exactly what type of brain tumor he had.  After surgery, he had a temporary drain (called EVD) in his brain to relieve pressure from hydrocephalus but he ended up having 2nd surgery to put a VP shunt which is a permanent drainage system that drains water accumulation in his brain to his peritonium (inside belly).  He will need to have this shunt for rest of his life.  The biopsy result came back as grade 1 pilocytic astrocytoma which is a benign tumor.  We're relieved that his tumor was benign but like his oncologist said, "there is nothing benign about having a brain tumor".  Even though tumor's pathology may be "benign", he has a long battle in front of him.  He also had a surgery to place a central iv line called "porta-cath" to be used for his chemotherapy.  After almost 2.5 weeks of hospitalization at the Children's national medical center, he came home on February 8, 2010.

Background - before brain tumor

Jason was born on June 12, 2008.  He was God's gracious gift after we lost our twin babies, Hailey and Kailey.
He was a perfectly healthy and cute baby!
He was growing well without any problems until he was about 5 months old when he slowly started to refuse his formula and it was always very challenging for us to feed him.  He used to take more than 30 oz of his formula a day without any problems but it became really hard to feed him even 20 oz a day.  With his feeding refusal continuing, he basically stopped growing.  He was born at > 95 percentile for weight but by the 6 months of age, he had fallen far off the chart, less than 3 percentile for weight.
He was diagnosed with FTT (failure to thrive) at 7 month and his pediatrician admitted him to a local hospital to find out why he was refusing feeding and stopped growing.  They ran all kinds of tests; tested his heart, lungs, GI tract and brain for any abnormalities but found nothing wrong.  During this hospital stay, he was started on NG tube feeding to help him gain weight.  NG tube is a tiny tube that is inserted through his nose to his stomach to help him get needed nutrition.
After starting NG tube feeding, Jason's dreadful vomiting saga has started...also NG tube made Jason even more orally aversive.  He didn't want to eat & swallow anything while having his NG tube.
We had to take NG tube out because his discomfort was so evident and oral aversion was getting worse.  After a few months of battling to feed him by mouth without any success, we had the G-tube surgery when he was 13 months old.  G-tube is a feeding tube directly inserted to his stomach to feed him.   It was a very hard decision to give him a G-tube but by that time, Jason was so anorexic and cachectic, he was basically all bones and skin.  With G-tube and a new formula (Elecare) he started to gain weight.  However, his vomiting continued even with many medications and slow, continuous feeding.  Something was still not quite right but nobody really knew why he continued to vomit.
With his weight gain, our next goal was to teach him how to eat by mouth again.  With G-tube feeding and specially with the bad-tasting new formula, he stopped eating anything by mouth.  He was 100% G-tube fed. 
Even with "failure to thrive" and G-tube feeding, his physical development was on tract and he was meeting his milestones.  He started walking around 11 months of age and he was very very, I mean, VERY active boy, who was like the "energizer bunny", always on the go, up and moving, climbing on things...but things were starting to change...

The First Post

I know.. I have Cyworld mini-hompy that I don't update at all and I do have a Facebook account..but I want to try the blogging, too. =)
Mainly to update Jason's Journey through his fight with the brain tumor.
I will use this blog to update on Jason's condition and treatment as much as possible.
Someday, I hope Jason will be free of this yucky brain tumor and will read this blog... and hope he will realize how special he is, what a strong fighter and a true living miracle he is..

I was reading someone's blog posts the other day.. she had a child with brain tumor also..at the end of each posts, she always wrote "believing"....
I realized.. that's what I needed these days... "believing"...believing that Jason will walk again soon, believing that Jason will fight this through, believing that he will be someday cured of his brain tumor, believing that our family will have a normal life soon again... believing that everything will be ok..

Believing and positive thinking... these are what's been lacking in my life these days...
I felt fearful, hopeless and angry about things happening in my life..physically, mentally & emotionally tired and burned out...
But, I think I have to change... I need to change..

I will believe from now on...