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


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 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 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!!  =)


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 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...