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'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.