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!