Wednesday, December 21, 2011

Good news and bad news

Lots of things happened during the past 4 months or so since I updated this blog.
Jason finally got admitted to Kennedy Krieger institute's intensive feeding program and finished 2 month course of the feeding treatment.  The result is absolutely amazing.
Now he is eating!!!
He still cannot eat regular texture foods yet and eats junior texture food (food that's similar to applesauce consistency) but we're still very glad that he EATS by mouth!
He eats enough by mouth so that we could cut down on his tube feeding.
Now he gets 75% of his calories from his food by mouth and only 25% by g-tube feeding.
He's working on praciticing chewing and actually is much better at chewing foods now. 
Hopefully, soon we will increase amount of food to get rid of g-tube feeding completely.
Well there is a bad news... hmm
His routine MRI on October was a little questionable so he had a repeat MRI a little sooner...2 weeks ago..
and the result is not so good.
The tumor is slowly growing again...
We are going for a second chemotherapy starting January 5 2012.
This chemotherapy will last approximately 1 year as well.
Weekly chemotherapy for 1 year....
Well please pray hard for Jason so he can endure this round of chemotherapy well without too much complications.

This video clip was taken on the Thanksgiving day during home feeding practice session.
We still have to follow a very strick protocol to feed him but I think it's worth it!!

Friday, August 5, 2011

Jason is doing well!!

Wow it's been already more than 2 months since I updated the blog!!  I've been really lazy, haha!!
Well, Jason is doing well.  He is more active and playful these days.
He had his routine MRI in July which showed that his tumor is still stable.  Hooray!
We're are still waiting to be admitted for the intensive feeding therapy at Kennedy Krieger Institute.  Last month, I heard from KKI that they had submitted paperworks, clinical data/information etc to my insurance company for their approval.  They said if things go well, then he will be admitted to the program maybe at the end of August or some time in September.  Meanwhile, they recommended us to work with the outpatient feeding therapy program with KKI's behavioral psychologist.  So we went for our first appointment last Monday and Jason did fairly well.  This time, he didn't mind working with the psychologist.  At our first appointment, the behavioral psychologist gathered information about Jason's feeding history and observed me feeding Jason different types of food items.  Then, she recommended me to do daily "empty spoon acceptance" practice at home.  Basically, I have to sit Jason on his high chair and offer him an empty stoon by saying "Jason, take a bite".  When I do this I set the timer for 2 minutes.  Jason has to accept 2 empty spoons during this 2 minute period.  Of cours, he fought hard not to take the spoon but I managed to make him take 2 "bites" before 2 minutes was up.  We have to do this everyday then next step will be offering spoon with little bit of food at the tip, the psychologist said.   If this goes well and Jason takes spoons without too much fight, then he will have better chance of doing better with the intensive therapy, she said. 

Jason continues to eat some foods, not enough to deliver any significant amount of calories but still this is very promising.  He still loves roasted seaweed (ghim), ramen noodles, veggie chips and he also loves Korean fish jerkey (jui-po).  =)   I hope I can introduce some other types of foods but at this time, these are pretty much all he wants.
Well, I think that's pretty much all the updates, I guess.  =)

Tuesday, May 3, 2011

Jason is showing more interest in food!

Jason has been eating some κΉ€ (korean roasted seaweed) for a while and some chips (mainly veggie sticks from Trader Joe's, shrimp chips) and recently, he is showing much love for ramen noodles!! 
He still cannot chew and swallow effectively.. it looks like he's melting the seaweed and chips in his mouth then swallow.. ramen noodles?  I think he's cutting them in small pieces and then just swallow.
It looks like he likes salty taste.   When I gave him some chocolate before, he threw up.  =)
When we gave hims some orage juice, he threw up that also..strange thing is that he used to drink some apple juice last summer without any problem or resistance but these days, he just wants some salty foods.
At the evaluation at KKI, they told us to train him to sit on his high chair whenever he is eating food.  We tried this and Jason is doing quite well... only problem is that he doesn't want to sit on it until he finishes his food... he wants to get out of high chair only after about 10 minutes then wants to walk aroud and eat again..
I let him move around/walk around while he eats his chips and stuff...even though I am not supposed to.
Well.. I will post some video clips of Jason "eating" some food.

Monday, May 2, 2011

ALL DONE, really!!

Last Thursday, Jason finally COMPLETED his chemotherapy!!!!
It took exactly 15 months to finish the whole chemotherapy!  We can't be any more proud and happy!
When Dr. Packer and the neuro-onc team told me "congratulations".. I almost cried..
Now, Jason and the whole family will enjoy this "treatment free" time.  =)
Jason's tumor will be monitored with MRI every three months.  His porta cath will be kept in at least until the first MRI scan shows stable tumor... then we can take the porta cath out.
Hope the tumor stays stable for a long long time so we don't have to do anything.
Now, our next goal is to finish Intenvise Feeding Therapy at Kennedy Krieger Institute sometime in this summer and Jason will be able to eat by mouth!

Friday, April 15, 2011

Week 2 of last chemo cycle and a stable MRI!

So last Thursday, Jason received chemotherapy, week 2 of last cycle without any problem.  Also, the final report from last Monday's MRI came out and it was STABLE!  no new growth!

The left side is from January of 2010 when Jason was first diagnosed with the brain tumor, before surgery and chemotherapy.  The rigt side is from Monday's MRI.  Visibly a big decrease in size overall.  Jason's neuro-oncologist said it looked like about 50% reduction in overall size.
Good.. Jason has two more weeks to complete the current cycle of chemotherapy.  Then we will be just monitoring his tumor with regular MRI until it shows any signs of regrowth.

Sunday, April 10, 2011

Finally, the LAST CHEMO cycle!!

Last week, Jason received the chemotherapy without any problems.  This was week 1 (out of 4) of the LAST chemotherapy cycle!!! Yay!  If all things go well, his chemotherapy will be completed in 3 more weeks.
What a long chemotherapy it was!  It took him almost 15 months to complete the induction and 8 cycloes of chemotherapy.  After this chemotherapy is over, Jason will be monitored every 3 months with MRI.
If there is any signs of tumor regrowth, then he will be put on some more could be another chemotherapy or radiation, or whatever that might be appropriate at that time.  Just hoping that the tumor will remain stable for a long time.
Lately, Jason is showing more interest in some foods.  He like to eat "gim" which is a thin roasted/seasoned korean seaweed.  Also, he likes to put "veggie sticks" from Trader Joe's in his mouth.  He usually take a small piece into his mouth and melts them and swallow.  He still doesn't know how to chew and swallow.  Basically, he is melting these food and swallow what he can.  He also seems to like american cheese slices (again, these are easily melt in his mouth).  I wanted to introduce more food items so I bought some cheddar cheese flavored corn puffs and dry freeze banana slices from Trader Joe's today.  I think these items will easily melt in his mouth.
Next month, we will start going to Kennedy Krieger Institute to prepare for the intensive feeding therapy.  Jason will work with an OT (occupational therapist) weekly who can introduce many food items with variety of textures and tastes and possibly work with Jason's sensory issues while he is on the waiting list for the intensive feeding therapy.  I am hoping that he can get into the intensive feeding therapy and completed it sometime in this summer and start his special education/IEP this fall.  Let's have our fingers crossed!!!!
my husband creasted this pic using an android app called camera 360, cool!!

Saturday, March 26, 2011

Updates, updates, updates... looked like I deserted this blog for almost 2 months!!!  Sorry, I've been really lazy.
So many things to update.. maybe I will use bullets to organize the updates, LOL.

1.  Jason's chemotherapy is going well.  He just finished the cycle #7 last Thursday.  Well, he couldn't totally finish it because Jason got a cold.  We had to call it off after week 3 of the cycle because Jason's cold was still lingering aroud.  Finally, 1 more cycle of chemotherapy and Jason will COMPLETE  the chemotherapy.  It was started 1st week of February 2010, so it took almost 15 months to complete.  Jason is getting  a one week break from the chemotherapy and will start the last cycle on 4/7/11.

2.  Like I said in #1, Jason had a cold and of course fever, so he had to get a iv antibiotic therapy for 2 days.  Fever during a chemotherapy when white blood cell counts are low could mean a potential for a serious infection.  It's called neutropenic fever or febrile neutropenia.  Luckily, his ANC was not below 500 for him to be admitted in the hospital.  Doctors said it is ok for him to get 2 days of iv antibiotic therapy as an outpatient.   I think Jason got sick when we invited a few families for a dinner.  One family brought their daughter who was running a high fever and pretty sick....=(.... no good...=(

3.  I don't know if I ever mentioned that Jason has been drinking water like crazy for the past 1 year or so...I was so worried that he might have DI (diabetes insipidus) and his doctors tried to test for this last April but we couldn't get a definite result.  Diabetes insipidus is a condition where one's body excretes large amount of very dilute urine and causes excessive thirst (therefore excessive drinking water).  Anyways, this problem has gotten really worse lately, and Jason was drinking way too much water (almost 2.5 liters of water a day!!) and peeing way too much (leaky diapers everyday!!) and whenever he couldn't get water he would get really fussy, and he always woke up in the middle of the night several time to fuss for water.  Well 2 weeks ago, we tested him again for DI and the result showed that he has a partial DI.  So he was started on a hormone called desmopressin which made such a big difference!  He doesn't drink water too much any more, he doesn't make crazy amount of pee any more, and most of all, he finally sleeps through the night without waking up!!!  We are very happy.!!!!   Well, also, he was diagnosed with hypothyroidism at the same time... so he's on thyroid hormone, too.

4.  What's next?  hmm... well.. we went to Kennedy Krieger Institute in January for feeding therapy evaluation.  Last year, he was seen by them and they had recommended 6-8 weeks of the intensive inpatient feeding therapy.. but then he was diagnosed with the brain tumor so it was put on hold...
This time, they recommended either intensive inpatient therapy or intensive outpatient therapy.  The only difference is that for inpatient therapy, we need to be admitted in the hospital for the whole 6-8 weeks for the treatment.  For the outpatient therapy, the therapy will be on Monday through Friday, between 8am to 5 pm, and we have to commute to KKI in Baltimore everyday for 6-8 weeks.  The intensity of the treatment is about the same...But there is a long waiting list for this program.  So starting May 2011, Jason will be seen by OT at KKI weekly to start feeding therapy until a spot comes up for Jason for the intensive feeding therapy.  Hopefully, some time during this summer, Jason will be in the intensive feeding therapy program and will start eating some foods.

Well, I will post other updates later.. =)
Jason in stroller, waiting for his chemotherapy
Jason in school, ^^

Jason sitting in his new armchair

Wednesday, January 19, 2011

Good news again!

Jason started 6th cycle of chemotherapy last week after holding off 1 week because of low blood counts.
He tolerated very well as usual even though he chewed up the iv tubing causing one of his chemotherapy medicaiton to leak out of the tubing.  He was sitting quietly in his stroller while getting the infusion watching his DVD so I thought everything was ok.  Well, when about 10 minutes left to finish infusion, I found that he was chewing up the iv tubing.. and when I checked the tube, it was punctured already and medication was dripping a bit.  I immediately called the nurse and she stopped the infusion and notified the doctor.  They all said nothing like this ever happened before.. =(  So the doctor went to search what happen if he swallow this chemo med by mouth instead of getting iv infusion.. and they had to file an incident report etc.  Jason was fine and we all thought even if Jason swallowed some of the chemo med, it would cause no harm.  He finished with the rest of the infusion and came home.  =)  He often bites and chews up his feeding tube at home causing formula leak on his crib but didn't know he would chew up the iv tubing.. next time I have to keep my eyes on him really well.
Before I talk about the good news, I have to tell you about Jason's emergency room visit on Tuesday night/early Wednesday morning.  Tuesday night, I started his night feeding at 11:00 pm as usual and I kind a fell asleep only to find that Jason woke up around 11:30 and playing in his crib.  Since he was doing ok in his crib, I went back to sleep and later he fell asleep too.  Around 2:30 amd I woke up again to refill his feeding bag and found out that his g-tube came out completely!!! With the water balloon of G-tube still inflated.  The way the G-tube stays inside his stomach is that it has a balloon inside the stomach that's biggner than the size of thestomach hole (stoma) which hold the g-tube in place.  The balloon is inflated with water from the outside port after it is inserted into the hole in the stomach (stoma).  The strange thing is Jason's g-tube's balloon was still filled with enough water to hold it in place but somehow it didn't and came out... which means that it had to be pulled by a great force.  I think when Jason was awake during the night he jumped in his crib and maybe stepped on the tubing causing snapping force to G-tube to come out.
Anyhow, when I found that the G-tube is completely out, I tried to insert it back but I couldn't because the hole was somewhat alreay closed.  I woke up my husband and ask his to try and he couldn't either.  We we went to the Children's hospital emergency room in the middle of the night.  The whole family went including Michelle.  We arrived at the ER around 4:30 am and luckily the ER doctor used some trick and could insert the tube back in Jason's stomach.  We're so glad that he didn't need another surgery to replace the g-tube.  We had to wait until 8:30 am to have fluoroscopy (kind of x-ray) done to make sure the tube is in correct place.  And it was in the correct place.. so we came home just in time for Michelle's school start @11:00 am which was delayed by 2 hours because of snow.  =)
Ok.. time to announce the good news!  Jason had his routine MRI of brain on Thursday morning before he received his chemotherapy (so we had to stay in the hospital almost 8hours on that day to do MRI and chemotherapy).  Even though the final/official reading was not ready yet on that day, Jason's neuro-oncologists and oncologists looked at the MRI result and told us that the brain tumor is smaller again!!!
Yes! it's gotten smaller again! The MRI is done usually after 2 cycles of chemotherapy are done, but this time, he only received 1 cycle because of low blood counts, and only received 1/2 dose of chemo but still his tumor became smaller!! We're all happy and doctors said things are going into right direction/things look promising!!
These days, Jason is overall doing very well.  No vomiting what so ever since on bolus feedings; he's very active and playful.  He even goes to a playgroup weekly that runs by his OT (occupational therapist) and he's tolerating that pretty well, too. =)

Tuesday, January 4, 2011

Happy New Year!! and updates

Wow, I've been really lazy!!  I haven't posted for more than 1.5 month?  =)
Anyway, I wish everyone a happy new year!

Jason has been doing very well.  He was finally able to finish cycle # 5 of his chemotherapy on the week before the Christmas.
A major big change happened.  I think it was early December that Jason's GJ tube was displaced and came up to his stomach then the tube kept migrating up to his throat choking him.  It happened on a weekend while I was at work and when my husband discovered that Jason was choking from the displaced tube he heroically removed the GJ tube and saved Jason.  Then my husband put a Mic-Key Gtube button in his stoma instead (otherwise the hole in the stomach will close and Jason would need another surgery to insert a new Gtube).  And guess what... Jason has been tolerating Gtube feeding really well since then!!
The reason Jason had to have a GJ tube in the first place was because he was vomiting so much with Gtube.. but with this emergency Gtube, Jason was doing so well. 
We went to see his GI doctor and she was very impressed and we decided to keep him on Gtube feeding, no need for GJ tube feeding!.  and we even transitioned to bolus feedings... that is Jason gets continuous feeding only at night for 8 hours and during the day, he gets 4 bolus feedings (each 1 hour).  So Jason has more tube-free time!!  He's been tolerating this bolus feedings beautifully and has not vomited for past 2 weeks!!
Jason had an eye exam again.. this time with Dr. Avery at the neuro-ophthalmology (which is part of the multidisciplinary brain tumor program at Children's National medical center).  He found that Jason has a 4th cranial nerve palsy.  =( 
It's a problem with the nerve that controls muscle that controls the eyeballs.  With this problem, one's eyeballs are not parallel and things may look double.. and one may tilt his/her head to one side to compensate this double vision problem.  Jason doesn't tilt his head to one side at all...and doctor said he might have already figured way to live with it.  He said it's not a big issue now.. if it becomes problem later (double vision and tilting of head etc) then a simple surgery can fix the problem.
On the New Years day weekend, we went to Wisp mountain for a family ski trip!  Of course, Jason and I didn't ski at all but Michelle and my hubby had wonderful time skiing/snowboarding.  Jason did well while we were there for 4 days!
It looks like Jason is definitely doing and feeling well!
This week, Jason will start a new cycle of his chemotherapy... I hope that he tolerates chemotherapy well and also tolerate Gtube feeding well with the chemotherapy.

Just a couple of recent pictures of Jason.