Hew..today Jason had an ophthalmology appointment. We've been going to the Children's hospital for the past 3 days! and I am really tired now.. each time it is at least 1.5 hours of driving to the hospital in the horrific DC metro morning traffic..exhausting..
Anyway, today's eye appointment was set up urgently yesterday because of Jason's MRI finding.. the increase in the ventricle size/worsening of hydrocephalus..
His neuro-oncologist wanted to make sure that increase in cranial pressure is not affecting Jason's eye nerves. It was a long appointment.. and quite traumatic to Jason.
His eyes were dilated with eye drops and the doctors wanted to see behind his eyes to check for any swelling of the optic nerves but of course, Jason won't stay still so he was wrapped with a sheet and strapped to a bed with lots of velcros so he won't move around. =(
He hated this so much he cried and vomited during the exam.
After going through all these trauma, at least the result is good. No swelling of the eye nerves were found. Eye doctors think the increase in ventricle size/worsening hydrocephalus is not causing any damages to Jason's eye nerves.. good..
Friday, October 29, 2010
Thursday, October 28, 2010
Chemotherapy cycle #5 and MRI results
I've been lazy lately and haven't updated the blog for a long time. Sorry..=(
Anyways, Jason has been doing alright. He had his 2 weeks break from the chemotherapy and had the routine MRI last Tuesday.
The MRI results is mixed.. his tumor is SMALLER again!! yay!! and his spinal metastasis are stable, yay!!
But his ventricle size was slightly bigger on the MRI suggesting that his VP shunt may not be working well again!! yikes! I didn't notice too much symptoms like vomiting and fussiness but my husband feels that Jason has been a bit more fussier lately which may be contributed to inrease in ventricle/increase cranial pressure.
So we're going back to see Jason's neurosurgeon, Dr. Yaun, again next week. Since Jason doesn't have too much symptoms, the neurosurgeon might just continue to monitor or she might want to take Jason back OR to adjust shunt valve again.. I don't know what the final decision will be.. We will know next week.
wow.. this vp shunt thing is not easy...so much problems and hard to get complete control over it.
Yesterday, Jason got a new GJ tube placed because it was leaking a lot making such a mess, staining his clothes everyday. This time placeing the new GJ tube under the fluoroscopy was a breeze! done so fast, only took 15 minutes or so. I really liked that.. hope this tube stays in place for a long time without causing too much trouble.
Today would have been the first day of Jason't new chemetherapy cycle (cycle#5) but Jason could not get his chemotherapy today because today's blood tests revealed that his platelet count was too low (meaning that he is at a higher risk of bleeding). During 2 weeks of break from the chemotherapy, his blood counts supposed to bounce back and become close to normal for him to get chemotherapy again but this time for whatever reason, his blood counts didn't recover... too bad...=(
So his chemotherapy was postponsed untile next week. Hopefully, next week, Jason's blood counts will recover for him to receive chemotherapy.
Anyways, Jason has been doing alright. He had his 2 weeks break from the chemotherapy and had the routine MRI last Tuesday.
The MRI results is mixed.. his tumor is SMALLER again!! yay!! and his spinal metastasis are stable, yay!!
But his ventricle size was slightly bigger on the MRI suggesting that his VP shunt may not be working well again!! yikes! I didn't notice too much symptoms like vomiting and fussiness but my husband feels that Jason has been a bit more fussier lately which may be contributed to inrease in ventricle/increase cranial pressure.
So we're going back to see Jason's neurosurgeon, Dr. Yaun, again next week. Since Jason doesn't have too much symptoms, the neurosurgeon might just continue to monitor or she might want to take Jason back OR to adjust shunt valve again.. I don't know what the final decision will be.. We will know next week.
wow.. this vp shunt thing is not easy...so much problems and hard to get complete control over it.
Yesterday, Jason got a new GJ tube placed because it was leaking a lot making such a mess, staining his clothes everyday. This time placeing the new GJ tube under the fluoroscopy was a breeze! done so fast, only took 15 minutes or so. I really liked that.. hope this tube stays in place for a long time without causing too much trouble.
Today would have been the first day of Jason't new chemetherapy cycle (cycle#5) but Jason could not get his chemotherapy today because today's blood tests revealed that his platelet count was too low (meaning that he is at a higher risk of bleeding). During 2 weeks of break from the chemotherapy, his blood counts supposed to bounce back and become close to normal for him to get chemotherapy again but this time for whatever reason, his blood counts didn't recover... too bad...=(
So his chemotherapy was postponsed untile next week. Hopefully, next week, Jason's blood counts will recover for him to receive chemotherapy.
Wednesday, October 6, 2010
Sunday, October 3, 2010
Chemotherapy cycle 4, week3
Jason did well with his chemotherapy this week.
I was sick with a mild cold last week (still coughing...thought) and Jason might have gotten a mild cold from me also.. he was a bit more fussy and vomited little more this week... making us all worry again but he's getting better.
He's making more progress in terms of walking. When I hold his hands to help him walk, he now will let his hands go and will walk about 10 steps or more on his own. Jason likes to practice alot... hopefully, he will walk soon. =)
I was sick with a mild cold last week (still coughing...thought) and Jason might have gotten a mild cold from me also.. he was a bit more fussy and vomited little more this week... making us all worry again but he's getting better.
He's making more progress in terms of walking. When I hold his hands to help him walk, he now will let his hands go and will walk about 10 steps or more on his own. Jason likes to practice alot... hopefully, he will walk soon. =)
Thursday, September 23, 2010
chemotherapy cycle 4
Jason started cycle #4 of his chemotherapy last week. Today was the 2nd week, and he tolerated well.
Mommy was sick with a cold so daddy went to the clinic together. =)
Today, 7 times Tour de France champion and a cancer survivor Lance Armstrong came to the Children's National Medical center to visit kids with cancer... and guess what, we had a chance to talk to him and take some pictures!! =)
Mommy was sick with a cold so daddy went to the clinic together. =)
Today, 7 times Tour de France champion and a cancer survivor Lance Armstrong came to the Children's National Medical center to visit kids with cancer... and guess what, we had a chance to talk to him and take some pictures!! =)
 |
| Mr. Amrstrong looking at Jason |
 |
| taking picture w/ Mr. Lance Armstrong |
Jaon is doing much better. Now he can walk with holding mommy/daddy's hands. If mommy/daddy let go of his hands, he can still take about 10 steps on his own. He has his ankle brace that he can wear.. he hates it but we will continue to try it on while he's sleeping.
This video clip was taken yesterday.. he's walking along the rail/holding the rail. =) Sorry for the tilted image. turn your head or turn your computer screen. =P
This was taken on the same day.. Jason is "playing" the piano. He loves to play the piano..soon we have to start the piano lesson! =P
Thursday, September 9, 2010
September is childhood cancer awareness month
I just took the survery. The "Facts" below are too sad.....=(
From: http://www.surveymonkey.com/s.aspx?sm=9mf%2buPwkhAtSxfneQUjTQw%3d%3d
September 2010 Childhood Cancer Awareness Month Surveyhttp://curechildhoodcancer.ning.com/
2. Thank you for participating in the Inaugural PAC2 September Childhood Cancer Awareness Survery!
Thank you for taking the survey. Sadly, all of #9 is true...
The Facts:
- chances are about 1 in 300 any child will be diagnosed with cancer before age 20
- Every day 40 to 50 children are diagnosed with cancer
- 1 in 4 of these children will die within 5 years
- 2 in 4 will survive 5 years but develop long-term, life-altering and threatening health problems
- Only 1 in 4 will survive 5 years without major problems
- There are no warning signs or unhealthy lifestyles. No regard to race, creed, color, religion, or socio-economic status.
Despite these facts, childhood cancer is considered "rare". Yet, does two classrooms of children diagnosed with cancer every school day, with one-half of a classroom dying from cancer, sound "rare"? It’s “rare” only if it’s not happening to your child. But for over 12,500 children and families in America this year, it will not be "rare". Each will discover the desperate need for increased funding specifically for kid cancer research, while enduring the most devastating experience of their lives.
When many people hear childhood cancer, they may only think of St. Jude and TV ads with cancer kids with round faces (from steroids) and bald heads (from chemo). Yet while it is a leading childhood cancer research center, St. Jude doesn't work exclusively on cancer research and treats less than 5% of all children with cancer. Or perhaps you think of the American Cancer Society and its support for childhood cancer? Unfortunately, in 2008, with $1,078 million of public support; the ACS gave only $4.2 million to childhood cancer research, less than 1/2 a penny for each dollar of support.
Nearly 90 percent of cancer kids are treated by members of the Children's Oncology Group (COG), an international consortium of over 230 hospitals and doctors working together and cooperatively sharing results. This cooperative research allows COG to improve cure rates at a faster pace than any single institution could accomplish alone.
As a nation, shouldn't we prioritize saving our children? The facts on funding suggest we don't. So your help is needed. No child should ever have to ask, "Mom and Dad, what's hospice?"
Please help us cure childhood cancer:
1 - Share this survey with family, friends, teachers, co-workers, sports teams, scouts, PTA, etc
2 - Sign & support the Cure Childhood Cancer: Raise Awareness & Funding petition at http://www.thepetitionsite.com/1/CureChildhoodCancer
3 - Join PAC2 (http://curechildhoodcancer.ning.com), a childhood cancer advocacy community to learn more about these issues and ways to help
4 - Donate to organizations specifically devoted to funding childhood cancer research at COG hospitals:
St. Baldricks Foundation
(http://www.stbaldricks.org)
St. Baldrick's uses donations to volunteers who shave their heads in solidarity with kids fighting cancer to fund more childhood cancer research than any organization except the US Government.
CureSearch for Childhood Cancer
(http://www.curesearch.org)
CureSearch supports the Children’s Oncology Group, the world’s premiere pediatric cancer research collaborative that treats more than 90% of all children with cancer.
Alex's Lemonade Stand Foundation
(https://www.alexslemonade.org)
Alex’s Lemonade shares the vision of its founder and creator, Alex Scott, who at age 4 began selling lemonade to fund research into a cure for all children with cancer.
Rally Foundation for Childhood Cancer Research
(http://www.rallyfoundation.org)
Through volunteers participating in athletic events, Rally raises awareness and funds for childhood cancer research.
On behalf of the 46 kids diagnosed with cancer today, thank you. We hope the day comes soon when we can say: It's not "rare", it's EXTINCT!
From: http://www.surveymonkey.com/s.aspx?sm=9mf%2buPwkhAtSxfneQUjTQw%3d%3d
September 2010 Childhood Cancer Awareness Month Surveyhttp://curechildhoodcancer.ning.com/
2. Thank you for participating in the Inaugural PAC2 September Childhood Cancer Awareness Survery!
Thank you for taking the survey. Sadly, all of #9 is true...
The Facts:
- chances are about 1 in 300 any child will be diagnosed with cancer before age 20
- Every day 40 to 50 children are diagnosed with cancer
- 1 in 4 of these children will die within 5 years
- 2 in 4 will survive 5 years but develop long-term, life-altering and threatening health problems
- Only 1 in 4 will survive 5 years without major problems
- There are no warning signs or unhealthy lifestyles. No regard to race, creed, color, religion, or socio-economic status.
Despite these facts, childhood cancer is considered "rare". Yet, does two classrooms of children diagnosed with cancer every school day, with one-half of a classroom dying from cancer, sound "rare"? It’s “rare” only if it’s not happening to your child. But for over 12,500 children and families in America this year, it will not be "rare". Each will discover the desperate need for increased funding specifically for kid cancer research, while enduring the most devastating experience of their lives.
When many people hear childhood cancer, they may only think of St. Jude and TV ads with cancer kids with round faces (from steroids) and bald heads (from chemo). Yet while it is a leading childhood cancer research center, St. Jude doesn't work exclusively on cancer research and treats less than 5% of all children with cancer. Or perhaps you think of the American Cancer Society and its support for childhood cancer? Unfortunately, in 2008, with $1,078 million of public support; the ACS gave only $4.2 million to childhood cancer research, less than 1/2 a penny for each dollar of support.
Nearly 90 percent of cancer kids are treated by members of the Children's Oncology Group (COG), an international consortium of over 230 hospitals and doctors working together and cooperatively sharing results. This cooperative research allows COG to improve cure rates at a faster pace than any single institution could accomplish alone.
As a nation, shouldn't we prioritize saving our children? The facts on funding suggest we don't. So your help is needed. No child should ever have to ask, "Mom and Dad, what's hospice?"
Please help us cure childhood cancer:
1 - Share this survey with family, friends, teachers, co-workers, sports teams, scouts, PTA, etc
2 - Sign & support the Cure Childhood Cancer: Raise Awareness & Funding petition at http://www.thepetitionsite.com/1/CureChildhoodCancer
3 - Join PAC2 (http://curechildhoodcancer.ning.com), a childhood cancer advocacy community to learn more about these issues and ways to help
4 - Donate to organizations specifically devoted to funding childhood cancer research at COG hospitals:
St. Baldricks Foundation
(http://www.stbaldricks.org)
St. Baldrick's uses donations to volunteers who shave their heads in solidarity with kids fighting cancer to fund more childhood cancer research than any organization except the US Government.
CureSearch for Childhood Cancer
(http://www.curesearch.org)
CureSearch supports the Children’s Oncology Group, the world’s premiere pediatric cancer research collaborative that treats more than 90% of all children with cancer.
Alex's Lemonade Stand Foundation
(https://www.alexslemonade.org)
Alex’s Lemonade shares the vision of its founder and creator, Alex Scott, who at age 4 began selling lemonade to fund research into a cure for all children with cancer.
Rally Foundation for Childhood Cancer Research
(http://www.rallyfoundation.org)
Through volunteers participating in athletic events, Rally raises awareness and funds for childhood cancer research.
On behalf of the 46 kids diagnosed with cancer today, thank you. We hope the day comes soon when we can say: It's not "rare", it's EXTINCT!
Tuesday, September 7, 2010
Trip to Ocean City, MD
It's been a while since we had a vacation. Traveling with Jason is very very challenging. But on the Labor day weekend, we went to Ocean City, MD for 3 days, for our much needed family vacation. Well, overall it was quite nice..we didn't get to go to the beach to play but it was fine. We went to the boardwalk on one night and Jason tolerated quite well. I think he actually liked the loud music and stuff.. =)
This week, we skip physical therapy at KKI because Jason has an appointment with his neurosurgeon on the same day (& same time!). We will probably continue just 2 more weeks of physical therapy and will stop it because there aren't much done at each physical therapy session other than some advice and ideas to try at home from the therapist. She said that there are not much to offer from her since Jason is so resistant to the therapy. She thinks that with the brace he will get better. If he doesn't get any better by the winter time, we can reconsider physical therapy again....=(
By next week, Jason's ankle brace should be ready..hopefully, he can keep this thing on as supposed to.
He continues to try to stand up and he's quite active these days. He climbs up on sofa, bed and stuff.. This morning he climbed and went up on the stairs all the way to the 2nd floor. I think he's getting better and better... hope that his right ankle straightens out soon so he can walk again! =)
Subscribe to:
Posts (Atom)