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.