tag:blogger.com,1999:blog-30654522856841898952024-03-13T00:24:22.166-04:00Team JoeyA 9-year-old boy fighting Xp11.2 translocation renal cell carcinomaEmily Younghttp://www.blogger.com/profile/03032560860937321024noreply@blogger.comBlogger37125tag:blogger.com,1999:blog-3065452285684189895.post-69475450087292087022014-09-03T20:24:00.000-04:002014-09-03T20:27:48.653-04:00The very sad truth of childhood cancer<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-family: Times,"Times New Roman",serif;"><span class="userContent">When Chris Tomlin came to town last year, I
was so determined to write him a letter. I wanted to tell him how his
music touches my heart and impacts my relationship with God. I wanted to
tell him how his music pulls me through the darkest d<span class="text_exposed_show">ays
of my life. And I was determined to ask him if he could contribute a
song in his concert to the children who are fighting cancer and to those
who passed. Then I hesitated. I had never been so hesitated like this
before. I hesitated. I hesitated when I pictured the concert in my head:
At a concert to worship God, a concert to praise God, suddenly images
of children with no hair appear on the big screen. This would upset
everybody! Nobody would like to see this!<br /> <br /> I shocked myself,
even as a cancer mom, I feel guilty that childhood cancer will upset
people! Then I realize this is why children cancer can't get funding.
Because childhood cancer is so sad, it is so so sad, that people don't
want to talk about it. Because people don't want to talk about it, we
believe it is rare. Because people believe it is rare, we don't work
hard to put money on research! This is the vicious circle of childhood
cancer. This is the very sad true fact of childhood cancer!<br /> <br />
Let's see how "rare" childhood cancer is. Each year around 13,500
children are diagnosed with cancer in the U.S. 35,000 children are
currently in treatment for cancer. In the U.S., one out of every five
children with cancer will not survive. Cancer kills more children than
AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies
combined. <br /> <br /> Let's see how we put our efforts to fight this No.1
disease killer of childhood in the U.S. Less than 4% of the National
Cancer Institute's budget is directed to childhood cancer research. In
the last 20 years, only two new drugs have been specifically developed
to treat children with cancer. Some pediatric brain tumors, such as
brain stem gliomas and pontine gliomas, are terminal upon diagnosis and
no new protocols have been developed in 30 years. Many pediatric
cancers, are terminal upon progression or recurrence.<br /> <br /> Ever
since Joey's diagnosis, everything in my eyes is sad. The same beautiful
blue sky of Florida is sad. The trees at the front yard are sad.
Flowers, birds, squirrels, everything is sad. Even the air is sad.
Childhood cancer is sad, it is so so sad that a survivor's story will
get thousands of likes, a lost life gets prayers, yet we expect the
family to get over it. NO! They will NEVER ever get over it! The loss of
a child to cancer is one of the worst tragedies a family can face.
People put better words to comfort the broken hearts. "Too much
suffering on earth." "Someday we will all be there." No matter what
religion you believe, a child dies from cancer, not because God doesn't
answer the prayers, not because this is God's plan, not because God's
grace is not enough. A child dies from cancer because we don't do
enough, because we ignore the fact that childhood cancer is NOT rare,
because we fail our children! This is MORE sad than the childhood
cancer!<br /> <br /> When friends see me, they often tear up, hugging me,
and ask, "What can I do for you?" I don't know how to answer. Now I have
answers for you. My dear friends, it's time to take a stand. I'm
writing this not for my child. I'm writing this for your child, your
child's child. They deserve a bright future of dreams. They deserve
equal opportunity to grow up like a kid. But who can make this happen?
Not me, it is you! It is each one of you! <br /> <br /> So here is my ice
bucket challenge for you. September is back to school month. September
is also Childhood Cancer Awareness Month. Think about those children who
are in hospital going through chemo, radiation because of this hideous
disease. If you can do one, or two, or even three of these things every
month, every week, you can make a difference to save a child's life! <br /> <br /> You can replace your profile picture with a gold ribbon in September;<br /> You can buy awareness items to spread the words; (<a href="http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.momcology.org%2Fsitepage%2Fawareness-items&h=IAQHJWGi7&enc=AZOTrvQmYiUMEQKi7pbOIymVm0EtnkEw7dkt009btND2lDXocrztBapyM9r5cU7ovZ6DPSMrV8zvPOrsjT4ifkzOIXJJRZf4V49DupvzAQAuWlCqJeBlyJSRl2Ryx6GIvzyDx07ErBQhc9zDfHVSP-En&s=1" rel="nofollow nofollow" target="_blank">http://www.momcology.org/sitepage/awareness-items</a>)<br />
You can make a donation to a foundation like the St. Baldrick's
Foundation, which is committed to funding the most promising research to
find cures for childhood cancers;<br /> You can sign up for race or walk to support Curesearch;<br /> <a href="http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.curesearchwalk.org%2Ffaf%2Fsearch%2FsearchTeamPart.asp%3Fievent%3D1092598%26team%3D6078057&h=VAQFZ2BCA&enc=AZO9hQptpSXfEnFsS8db1sfnDkxipTR2mM6hIP4yrHLADd5e5HeU9f3DTLUaHhCDs8-iBqivNxr44T9mLw9bBXc3tNnzIRANoGC_61uXHw8YVzkJ-PKL7ozesGhtq7DPP7Nsft-zwQClPlEY1ZJ6z11E&s=1" rel="nofollow nofollow" target="_blank">http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=1092598&team=6078057</a><br /> You can write to your congressmen asking for more government funds on childhood cancer;<br /> You can donate to the <a data-hovercard="/ajax/hovercard/page.php?id=246378298749265" href="https://www.facebook.com/maxloveproject">MaxLove Project</a>,
which is a nonprofit organization that empowers families fighting
childhood cancers and life-threatening conditions with whole-body
wellness resources, education and research.<br /> If you are an amazon
shopper, you can select a childhood cancer foundation like The Ethan
Jostad Foundation as your charity, go to <a href="http://l.facebook.com/l.php?u=http%3A%2F%2Fsmile.amazon.com%2F&h=sAQHvOrwx&enc=AZP_oqV_oTOZPFR4Qz7OD7gMraEn8TAMvBl3ReGJmsttitHaJ16-4867Uo6UBxx5hdF2x4HI9GUx99Utf9-I3KFZMKubJl0XOtPbul5_DXybGtF-GHMPb4_fcb_8Wg09lgfw2vSV2Fck5YzGNERALleW&s=1" rel="nofollow nofollow" target="_blank">http://smile.amazon.com/</a> and part of your spending will go to them;<br /> <br />
There are many other things you can do every day in September to be an
advocate for children fighting cancer. If you are willing, next
September would be the month we see gold ribbons flying everywhere just
like the pink ribbons in October. If you are willing, Empire building
would light up gold for our children. If you are willing, government
will finally listen to our voice. If you are willing, some suffering can
be stopped and lives can be saved!<br /> <br /> I never write the letter to
Chris Tomlin, instead I'm writing this letter to you. Because our
children are dependent on you. Because it is you that will make the
change. I'm listening to Chris Tomlin's CD Passion right now and ask
myself what my passion is. Since Joey's diagnosis, I have lost all my
passion of life. Cooking, movies, reading, shopping...I can't
concentrate to do anything I used to enjoy. All my passion is to find a
cure for him. Yet where is the cure? If we ignore the very true fact of
childhood cancer, if we remain indifferent to our children's suffering,
if we don't advocate for them, there would be no cure for my child,
there would be no cure for your child!<br /> <br /> Dear Lord, your grace is
ENOUGH, but our efforts is NOT. I pray for miracle, pray for healing
and pray for strength. Miracles do happen, but they happen for a reason.
I don't know where you will lead me in this journey, but I know you
will empower me with your words. Bless our children, Lord, and watch
those with you.</span></span></span></span><br />
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIcoF4n4KNMC8Owekm2v-7sDkFlLppNKp-xkHa-VhX87eE2ruYW3MRB0Br5cOPYvV-A9WHnwL6gHURFwcANwz5m8LLYLL9nJmIts2KIUIPz0w554_kfBgNY0Lb3esE5tsBOcld631VaSw/s1600/10599353_902957083064937_5308891524186129073_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIcoF4n4KNMC8Owekm2v-7sDkFlLppNKp-xkHa-VhX87eE2ruYW3MRB0Br5cOPYvV-A9WHnwL6gHURFwcANwz5m8LLYLL9nJmIts2KIUIPz0w554_kfBgNY0Lb3esE5tsBOcld631VaSw/s1600/10599353_902957083064937_5308891524186129073_n.jpg" height="355" width="640" /></a><span style="font-size: large;"><span style="font-family: Times,"Times New Roman",serif;"></span></span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-family: Times,"Times New Roman",serif;"><br /></span></span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com1tag:blogger.com,1999:blog-3065452285684189895.post-49793356299011804582014-08-19T11:11:00.003-04:002014-08-19T11:15:59.227-04:00First day of 5th grade<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj25LjdfQPwSQCRKv4y-ABHOEvbBtYRSmOX0MxyOm0qIPlMtIjeSLdkRp748dXGkJYC5QQdXOfPH3gbaZhThPlFotlwHxyJvZzC59RCoRnK3d-sDjUoQXAlC93fG2dvxBIMAl7NY4nXZLI/s1600/IMG_7864.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br /></a></div>
<div style="text-align: justify;">
<span style="font-size: large;">He made it to 5th grade, which dr. said he can't. We are living every bonus day. Thank you, God, thank you, my friends!<br /><br />On the first day of school, I am grateful, yet devastated as his tumors started to grow again, with more mets in the liver, which I am kind of expected because he has more pain recently. I have to give him morphine everyday now. He would rather pain, but not take morphine because it makes him constipate. He has a high tolerance of pain. After school, he was extremely tired, yet happy. I asked him about pain, he smiled and said, "I pain, but I just didn't tell anybody."</span><br />
<span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj25LjdfQPwSQCRKv4y-ABHOEvbBtYRSmOX0MxyOm0qIPlMtIjeSLdkRp748dXGkJYC5QQdXOfPH3gbaZhThPlFotlwHxyJvZzC59RCoRnK3d-sDjUoQXAlC93fG2dvxBIMAl7NY4nXZLI/s1600/IMG_7864.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj25LjdfQPwSQCRKv4y-ABHOEvbBtYRSmOX0MxyOm0qIPlMtIjeSLdkRp748dXGkJYC5QQdXOfPH3gbaZhThPlFotlwHxyJvZzC59RCoRnK3d-sDjUoQXAlC93fG2dvxBIMAl7NY4nXZLI/s1600/IMG_7864.JPG" height="265" width="400" /></a> </span><br />
<span style="font-size: large;">My heart aches, aches so much. Why life needs to be so hard and painful? But I can't fall, not a day for him because my child's life depends on our efforts, our fight, our courage, our determination. <br /><br />I sent Joey's fresh tumors to a lab in Houston for tumor protein expression testing. After more than 3 months of testing, they sent us a 20-page report, with a list of suggested drugs. The report even explained why the prior drugs failed according to the test result. I shared the report with Joey's oncologists, no one is serious. "Cancer is tough, it is not as easy as picking a drug to target the protein tumor expresses. There are too many variables in the lab." I agree with them. The other oncologist says his patient had this type of test done before, but no one has luck. <br /><br />With more than $6000 spent on such a report, yet no one cares about the result? I kept looking and think of a lab researcher I met last year. He is the most compassionate pediatric lab researcher I know. He keeps reminding me when fighting with a rare cancer, you need to establish a relationship with a proactive medical team. I realized what we need most dealing with such a rare cancer, is someone who is proactive, caring and compassionate, not necessarily someone with a big name. Who is such person?<br /><br />He suggested someone to me and I flew all the way with Joey to meet him in Cleveland clinic. Everything here is different, from social worker, nurse, to the oncologists, everyone is so professional and passionate! I was excited. However, he is not a kidney cancer specialist. He reviewed the lab report and suggested something we never try before, a drug cocktail. He said Joey only responded to a single drug for a short period of time, with such case, he would do drug combination. He base his choices on the lab report and discussed the case with the tumor board. He suggests blood work every week to supervise the side effects, adding a second drug from half dosage up, then adding a third, then a fourth. He also said, without too much thinking, PD1 (the drug we petition) is the best option for Joey.<br /><br />I came home with the determination that we would do it. Yet everybody else is against it. Yesterday we had a talk with the local oncologist. She is firmly against this idea and the other two oncologists who saw Joey before both don't agree because of the risks. There is no data of these drug combination with children and they think Joey is too weak to try.<br /><br />Here we are again, tortured with the decision. More drugs means more toxic body, yet maybe a new chance. The oncologist in Cleveland clinic said, "The chances are very small to win against this disease. However, if we are on the same page and concentrate on finding the right drug, exchange thoughts and data, then I think we have a chance."<br /><br />God, please, please give me some wisdom. We can't get the drug we want. But how can I help him hang in there until it is available?</span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com1tag:blogger.com,1999:blog-3065452285684189895.post-72312283670986487922014-04-15T20:22:00.001-04:002014-04-15T20:27:32.043-04:00Please sign this petition!<div style="text-align: justify;">
<a href="http://www.change.org/petitions/bristol-myers-squibb-please-grant-10-year-old-juntao-joey-xu-compassionate-use-of-your-anti-pd-1-l1-immunotherapy-drug-he-has-exhausted-all-other-options-and-cannot-wait-for-pediatric-trials-to-begin?share_id=cnyhtnoVSx&utm_campaign=autopublish&utm_medium=facebook&utm_source=share_petition"><span style="font-size: large;">Please grant 10-year old Juntao (Joey) Xu compassionate use of your anti-PD-1/L1 immunotherapy drug. </span></a></div>
<div style="text-align: justify;">
<span style="font-size: large;"></span><br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: large;">Joey Xu is a fourth grade student from Gainesville,
Florida. He is an artist, plays violin, and loves science, math and
reading. He is also a Boy Scout and an avid origamiist. My son also
insists that I tell you that Joey is really fun and kind.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;"></span><br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: large;">In March, 2013, two weeks after his
9th birthday, Joey Xu was found to have an abdominal mass on his left
kidney. His diagnosis was a form of kidney cancer that is so rare that
there are no pediatric specialists for this type of cancer in the
country, and no standard treatment protocols. Even after a year of
treatment, including 2 major surgeries, several courses of chemo and
other drugs, his tumors have grown and spread. He now has tumors
throughout his chest, abdomen, pelvis and neck. They are affecting his
ability to eat, and will soon affect his ability to breathe. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;"></span><br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: large;">However, a new line of immunotherapy
drugs that target the type of tumors that Joey has (tumors expressing
PD-LI) are being developed, including one called Nivolumab by
Bristol-Myers Squib, MPDL3280A from Genentech and <span id="yui_3_13_0_1_1397590275985_71450"><span class="yiv7893682732null" id="yui_3_13_0_1_1397590275985_71449">MK-3475 from Merck</span></span>.
Nivolumab is already in trials and saving the lives of adult cancer
patients. Pediatric trials of Nivolumab were due to start in March, but
were delayed until October, and the aggressive nature of Joey's tumors
mean that he can not wait that long for access to the drug. Genentech
has an adequate supply of MPDL3280A, but both companies need to be
pushed to let Joey use them.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;"></span><br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: large;">Joey's doctors at Shands/UF and the
Cincinnati Children's Hospital and an immunotherapy specialist at
Harvard have determined that his tumors are likely to respond to
Nivolumab or MPDL3280A and his oncologists are willing to oversee
compassionate use of these drugs. His family fully understands the
risks with experimental medicine, but they have nothing to lose, and
much to gain. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;"></span><br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: large;">Please sign the petition, forward to
your friends, and help publicize Joey's story. Hopefully Bristol-Myers
Squibb or Genentech will grant compassionate use of one of these new
drugs to Joey, so that he can continue to grow, and play, and learn, and
do all the other things a 10-year old should do. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;"></span><br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-size: large;">Please share widely right now! If you
have any connections with media outlets that can help us get this link
out to more people, or to the decision makers at Genentech or
Bristol-Myers Squibb please leave a message at Joey's Facebook page </span><a href="https://www.facebook.com/xp11.2TFERCC" rel="nofollow"><span style="font-size: large;">https://www.facebook.com/xp11.2TFERCC</span></a><span style="font-size: large;"> or email Joey's mom, Kathy, at </span><a href="mailto:kathyoasis@yhaoo.com" rel="nofollow"><span style="font-size: large;">kathyoasis@yahoo.com</span></a></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com0tag:blogger.com,1999:blog-3065452285684189895.post-36423369349536582332014-04-14T23:34:00.001-04:002014-04-15T19:07:48.738-04:00Compassionate use of drug<div style="text-align: justify;">
<span class="userContent"><span style="font-size: large;">Joey needs your help. This is how bad Joey's
tumors look. The solid black parts are brain, heart, bladder, etc and
all other areas in tummy, plevis, chest, airway, neck are his tumors. All
these tumors are eating out his energy, <span class="text_exposed_show">nutrition and his tiny body.</span></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQIevq9tWic9eaFO81SmM9Hww8BvFTvDcXdlCXIXeEWIYBMuAhjYkHSHyRo-giQq47eXF_308Yes8pTjzm8Bg-sH5L4ykt47QnGP0X26L4wqwL2FdJgEdHvg2hPpAlWk6Phf4cnJVuaes/s1600/PET.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQIevq9tWic9eaFO81SmM9Hww8BvFTvDcXdlCXIXeEWIYBMuAhjYkHSHyRo-giQq47eXF_308Yes8pTjzm8Bg-sH5L4ykt47QnGP0X26L4wqwL2FdJgEdHvg2hPpAlWk6Phf4cnJVuaes/s1600/PET.jpg" /></a></div>
<div style="text-align: justify;">
<span class="userContent"><span class="text_exposed_show">
<span style="font-size: large;">Now there is one drug, a promising new drug, can possibly save his
life. It's called Nivolumab from Bristol-Myers Squibb Corporate. It's
one of the anti-PD-1 or anti-PD-L1 immunotherapies. This drug has saved
the lives of many late stage adults RCC patients. The pediatric trial of
this drug was supposed to start in May, but now postponed to Oct. We
cannot wait for the PD1 trials to start in children as they keep on
being postponed and Joey needs treatment urgently. A lab in UF tested
both Joey's primary tumor and lymph node tumors, they all tested
positive to PDL1. His oncologists in Cincinnati Children's and Shands
and an immunotherapy specialist in Harvard believe the anti-PD-1 or
anti-PD-L1 immunotherapies, including Nivolumab, are the most promising
option for Joey and they will request the compassionate use of the drug
from FDA. <br /> <br /> For the grant of it, there are two important things:
The drug company must agree to allow the use of their drug outside of a
clinical trial. The FDA oncology medical officer in charge of
overseeing the new drug’s development must approve the use of the drug.
My dear friend, who is a lobbyist, will contact Florida congressmen and
senators and the general attorney of Florida and they will send my
letter to the drug company. So please, if you happen to have some
connection with government or this particular drug company, please
contact me. Please spread the words. This is a very hard and long
process, but we will try our best. I probably will run the social
campaign, newspaper, TV station and online petition, anything we need to
do. If you have experience or any suggestions, please let me know. <br /> <br />
This is all very overwhelming to me and I hear the clock clicking. Joey
is not doing well. He is very tired all the time. When he eats, he puts
his hands on the stomach to make him comfortable. I can literally feel
his tumors in tummy and neck. They are bigger. They are aggressive. Dr.
worries about tumors by his airway and asks me to watch his breathing. I
want to pull him out of school and rest. But he doesn't want to miss
FCAT again this year. So I took him home after the test. Looking at his
report card, I can't help crying. All "A", he never bring a
"B" home despite of so many absent and tardiness. I can't watch him
eaten away by tumors knowing there is a promising drug out there, but we
can't get it because of the system. <br /> <br /> Please help us, any
suggestion is appreciated! Again the drug is Nivolumab from
Bristol-Myers Squibb Corporate. I need contacts in the government and
this drug company. Thank you all for your supports!</span> </span></span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com0tag:blogger.com,1999:blog-3065452285684189895.post-41556151624645039392014-01-28T11:03:00.000-05:002014-01-28T11:06:42.579-05:00PEComa?<div style="text-align: justify;">
<span style="font-size: large;">I never expect to get another name of Joey's cancer after I sent his slides to Dana-farber, NIH, Children's oncology group, etc. tRCC is rare enough for me to find patients and treatment plan. As I continued to look for answers, I finally decided to send his slides to the most renowned pathologist in John Hopkins. Result came out it either PEComa or tRCC. I was shocked. The pathologist confirmed: your son's tumor is challenging and I can't give you a sure answer. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I searched PEComa and found a long post from adult PEComa patients all over the world. It is an even more rare tumor than tRCC and there is no case of pediatric PEComa reported in this country. They mentioned two names. I contacted one of them and unfortunately he doesn't see children and he assured me that he never heard of a child who has PEComa. Then he referred me to a pathologist in Harvard who sees PEComa.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I called to have Joey's slide sent to Harvard. The lady in pathology office recognized my voice, "It's you again!" I feel very appreciated they are patient with me and always sent his slides without delay. They almost ran out of tumors after I sent them to 7 different institutes. 3 days later, Harvard sent me the report, it is PEComa. R</span><span style="font-size: large;">eading the report, I couldn't believe my eyes. Another name? How about prognosis? treatment plan? is it genetic? All the terrible ideas came to me. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-size: large;">In the next 3 days, I have another file of pediatric PEComa I could find in literature, none in this countries, but some in Asian countries. No treatment plan is clear and surgery is the only curative method if the disease is local. </span><span style="font-size: large;">By this point, Joey has went through 5 months of oral chemo and 2 cycles of IV chemo. They both failed him. I'm mentally exhausted. We know so little about his disease since either is so rare, but in the other way as parents, we know too much, immunohistochemistry, target therapy, immunotherapy, etc, which scares us.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I decided I'm done sending his slides for more opinions. Human being doesn't have an answer. Joey's tumors overlap both cancers and the treatment plan needs to cover both. The only choice is to keep trying. Keep trying, keep trying until we find a cure someday. We will never give up.</span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com15tag:blogger.com,1999:blog-3065452285684189895.post-85873415541342694332013-12-08T00:02:00.001-05:002013-12-08T00:02:58.351-05:00Thanksgiving<div style="text-align: justify;">
<span style="font-size: large;">For many people who immigrate to this country, Thanksgiving is a lonely holiday. We are not alone, but we are lonely. No matter how successful our career is, how many new friends we made, how big the dinner is, how thankful we are living our big dream, we are lonely. I am lonely when I see my American friends keep posting photos of family get-together on facebook; I am lonely when I see people hugging families at the airport; I am lonely when the roasted turkey reminds me of my mom's cooking...</span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-size: large;">This year's Thanksgiving is extremely hard for us. The day before Thanksgiving, we flew back from Cincinnati with the heartbroken news of his tumors growing. Although Joey is not fighting alone and the community has been so kind, we are combating the loneliness of a rare cancer, only 64 cases in 6 years in America. This loneliness, fear, anxiety, uncertainty of future deprive me of a heart of appreciation on Thanksgiving. I'm more depressed and miserable than being thankful. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I called my mom in China. She is the only one in my family who knew the situation. My father doesn't know. I told her the bad news. "Calm down. Continue your life." She said. "Do what you can and take care of him. Leave other things to the doctor. Fear doesn't help you or Joey." I cried hard and said I want to go back to China with Joey in summer. "Don't plan. Live one day at a time." Mom is not a christian, but she said, "Pray everyday with Joey. Pray hard. Reflect on what you said and did." Mom is a positive, determined and wise woman. I never see her panic in any circumstances, even when Joey got diagnosed. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-size: large;">We didn't eat a big Thanksgiving dinner. Instead, we ate the leftover from lunch. No strength, feel empty in heart. Someone in facebook posted a video of Autor Anne Lamott's talk with Oprah. Anne says it's easy to thank God when life is going well. However, when times get tough, feelings of anger or complete silence can also act as prayer - as long as you're trying to tell the truth of your heart. Interesting. I never saw prayer in such a different form.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I remember dad said this before, "Life is a beautiful struggle." I pray some day I can really understand the beauty of this hardship. When time is rough, I lost my identity in Christ. We are from you. Joey comes from you and is a spark of your glory. We are your children. We are blessed in many ways, but I get lost. I know some day when I look back on this, I would see life at a different perspective and this journey a blessing. Pray for the day I could turn tears into smile and live a truly graceful life.</span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com13tag:blogger.com,1999:blog-3065452285684189895.post-8662437681523102642013-11-06T00:15:00.000-05:002013-11-06T00:15:29.868-05:00The Truth 365<div style="text-align: justify;">
<span style="font-size: large;">Coming tomorrow, 11/6 at 10 AM! Over 600 organizations and thousands of individuals will be SIMUTANEOUSLY sharing a link to the video “The Truth 365: A National Priority.” Please take a stand for children with cancer and join this international effort. All you have to do is share the video on Facebook, Twitter & any other social media platform you use. Also, please ask your friends and family to do the same thing. The world needs to know the truth about the lack of funding for childhood cancer research.</span></div>
<span style="font-size: large;"><div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk7s_lZ9s9T_ifBijiaBiQmLo1sQFV0DjfZ8j9Qxn50q2QgJlKWReaYI7GMMFdfntO4RzwOo9z97yJlFIfQHQTM5nUuOFZMYBo9qnOePmwpef1Va8VTmxutmR1LHyk0Fa3wpdaPsoAr0g/s1600/894798_726030160758029_1345302465_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="337" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk7s_lZ9s9T_ifBijiaBiQmLo1sQFV0DjfZ8j9Qxn50q2QgJlKWReaYI7GMMFdfntO4RzwOo9z97yJlFIfQHQTM5nUuOFZMYBo9qnOePmwpef1Va8VTmxutmR1LHyk0Fa3wpdaPsoAr0g/s400/894798_726030160758029_1345302465_o.jpg" width="400" /></a></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
On Wednesday at 10 a.m. in your time zone, please share the following link:</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<a href="http://bit.ly/1aRUBxe">http://bit.ly/1aRUBxe</a></div>
<div style="text-align: justify;">
<a href="https://www.siteadvisor.com/sites/http%3A//bit.ly/1arubxe%26h%3Deaqgjz_4n%26enc%3Daznakyqcxtzeiuclqujpmbazq0l7-weba0rnqirmhl_ezuitoxiwgxlv_v1uudyw3xeximhjbiishjn_zmziz4uz2khusy_7teadpkppbqc1xo62mzbgazitoytwb9xldujx_owgndnfxbv6kixy0w35%26s%3D1/-?pip=false&premium=false&client_uid=2608848907&client_ver=3.6.3.549&client_type=IEPlugin&suite=true&aff_id=755&locale=en_us&ui=1&os_ver=6.1.1.0"><img border="0" src="data:image/gif;base64,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" /></a></div>
</span><span style="font-size: large;"><div style="text-align: justify;">
If you tweet about it please include the hashtag<a href="https://www.facebook.com/hashtag/thetruth365film">#thetruth365film</a></div>
</span><span style="font-size: large;"><div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
An example post would be:</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
Please take a stand for these kids! Watch and share this video!</div>
<div style="text-align: justify;">
<a href="http://www.facebook.com/l.php?u=http%3A%2F%2Fbit.ly%2F1aRUBxe&h=3AQFCcf4_&enc=AZMVxOfaL2rGNmuRIeGDmcwAEXmNJSDE1B9_CnLq16IjWM1FYZKNt6GrhGqNYAqeHd7_Wc8C9m9ke3S5hpjb3SMdVUTEf0I9_km9zeZGFcPNOTx6Wy_ryOIOET3EhMIclWgCjQ1r9hFVU5XDtmqRX0Ux&s=1">http://bit.ly/1aRUBxe</a></div>
<div style="text-align: justify;">
<br /></div>
</span><div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwSw1dqnady98Ja6jzkANWyDuWSFi6_VJxrPwMbY3k8jz_nf9uv4qvsJ2XCs2Yq6W9Iy70klQuQbs78Azul9Q' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<div>
<br /></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com0tag:blogger.com,1999:blog-3065452285684189895.post-66525557236921875372013-09-29T21:38:00.001-04:002013-09-29T21:38:26.575-04:00Thank you all for your donation!<div style="text-align: justify;">
<span style="font-size: large;">We are indebted to every one of you who helped support us during the initial part of this battle with Joey. Because of your generosity and donations, we were able to provide Joey with many of his medical needs while facing physical, mental, and emotional challenges. We are overwhelmed by your thoughtfulness and very thankful that our financial stress was lifted because of your help. Joey is thriving in spirte of his cancer, and we pray he continues to respond to his treatment. For now, we have removed the donation button on the page - we pray we will not need any assistance again in the future, but are very grateful to know that support is there if we do. Again, thank you from our hearts!</span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com4tag:blogger.com,1999:blog-3065452285684189895.post-13072642055077082382013-09-13T23:38:00.001-04:002013-09-16T21:05:24.511-04:00Awareness? Action!<div style="text-align: justify;">
<span style="font-size: large;">Didn't realize almost half of Sep. passed. Everyday I see other moms at Momcology group, facebook, caringbridge, etc spread words about national childhood cancer awareness month. But I didn't do anything. I feel guilty. One voice says, "Sep. is forever different because you are a cancer mom." The other voice says, "so what? People will "like" your post and even "share". Then what? Everybody needs to be back to busy life. Don't even bother to post." I have this mixed feeling until I saw this article tonight. It's a very powerful article. I cried hard when I read the words. I cried hard when I saw the precious smile of this little girl. Honestly, I feel exactly the same as this mom, but I don't have the courage to say that out loud. I don't have the courage to do something because I don't know how. I asked oncologist and he said, "Your job is to take care of Joey." My friends say, "Your job is to live a happy day for Joey." Deeply, I told myself, "Your job is more than this." </span><br />
<span style="font-size: large;">Here is the article:</span></div>
<br />
<h1 class="title-blog" style="-webkit-text-stroke-width: 0px; background-color: white; border: 0px currentColor; color: #111111; font-size-adjust: none; font-stretch: normal; font: bold 32px/36px Georgia, Century, Times, serif; letter-spacing: normal; list-style: none; margin: 0px 0px 10px; padding: 0px; text-align: left; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
<span style="font-size: large;">Awareness... What a Bullsh*t Word</span></h1>
<div style="-webkit-text-stroke-width: 0px; background-color: white; border: 0px currentColor; color: black; font-size-adjust: none; font-stretch: normal; font: 15px/21px Georgia, Century, Times, serif; letter-spacing: normal; list-style: none; margin: 0px 0px 14px; padding: 0px; text-align: justify; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
I'm sure the word "awareness" comes from back in the day, when no one spoke of cancer. The "C" word, as it was called. People died quietly. Very rarely was a child with cancer even seen. Probably because there were no real treatments for them, so they died so quickly. <em style="border: 0px currentColor; font-style: italic; list-style: none; margin: 0px; padding: 0px;">Even 20 years ago, they were barely saving one child who was diagnosed with neuroblastoma</em>, we were told at our consultation with Memorial Sloan Kettering Cancer Center. Hell, we were told that our daughter, Isabella, wouldn't have survived her brain relapse if it had occurred just three years earlier. Isabella would have been dead 9 months after her initial diagnosis. There wouldn't even have been enough time for me to get her story out to you. So, awareness month was a good thing back then... hey, meet this little 3-year-old with cancer... Nope, wait.. She's already gone.</div>
<div style="-webkit-text-stroke-width: 0px; background-color: white; border: 0px currentColor; color: black; font-size-adjust: none; font-stretch: normal; font: 15px/21px Georgia, Century, Times, serif; letter-spacing: normal; list-style: none; margin: 0px 0px 14px; padding: 0px; text-align: justify; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
But now, times are changing. These kids are fighting harder and longer. Their stories are getting out there because the chemo drugs are not curing kids, but they are extending their lives. People ARE aware of them. Awareness of pediatric cancer is out there. But now we are getting stalled because the movement is not moving.</div>
<div style="-webkit-text-stroke-width: 0px; background-color: white; border: 0px currentColor; color: black; font-size-adjust: none; font-stretch: normal; font: 15px/21px Georgia, Century, Times, serif; letter-spacing: normal; list-style: none; margin: 0px 0px 14px; padding: 0px; text-align: justify; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
Here is what a typical pediatric cancer month looks like: You "like" a couple of Facebook posts about childhood cancer or maybe even "share" one. You think about signing up for a childhood cancer 5k, but your life is busy, so you don't get around to it. You take your kids to soccer practice and do homework and have drinks with girlfriends and go to work and church and read<span class="Apple-converted-space"> </span><em style="border: 0px currentColor; font-style: italic; list-style: none; margin: 0px; padding: 0px;">People</em><span class="Apple-converted-space"> </span>magazine to catch up on your favorite celebrities and see how short Lindsay Lohan's shorts were in NYC the other day... "Oh, no she didn't," you say. And then, you are running errands in late September and start noticing the city turning pink and think,<span class="Apple-converted-space"> </span><em style="border: 0px currentColor; font-style: italic; list-style: none; margin: 0px; padding: 0px;">I need to schedule that mammogram.</em></div>
<div style="-webkit-text-stroke-width: 0px; background-color: white; border: 0px currentColor; color: black; font-size-adjust: none; font-stretch: normal; font: 15px/21px Georgia, Century, Times, serif; letter-spacing: normal; list-style: none; margin: 0px 0px 14px; padding: 0px; text-align: justify; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
Then it is October 1.</div>
<div style="-webkit-text-stroke-width: 0px; background-color: white; border: 0px currentColor; color: black; font-size-adjust: none; font-stretch: normal; font: 15px/21px Georgia, Century, Times, serif; letter-spacing: normal; list-style: none; margin: 0px 0px 14px; padding: 0px; text-align: justify; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
Did you know that the 2012 cost of government elections was more than<span class="Apple-converted-space"> </span><a href="http://www.politico.com/blogs/charlie-mahtesian/2012/08/election-price-tag-billion-130856.html" style="border: 0px currentColor; color: #5e3786; cursor: pointer; list-style: none; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" target="_hplink">6.2 billion dollars</a>? Did you know that in 2012, the cost to RE-ELECT the SAME president was estimated to be<a href="http://www.huffingtonpost.com/2012/12/06/2012-presidential-election-cost_n_2254138.html" style="border: 0px currentColor; color: #5e3786; cursor: pointer; list-style: none; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" target="_hplink">2.6 billion dollars</a>? That is something you should be aware of. Because in 2012, we spent<span class="Apple-converted-space"> </span><a href="http://www.cancer.gov/aboutnci/budget_planning_leg/plan-2013/2013budgetrequest" style="border: 0px currentColor; color: #5e3786; cursor: pointer; list-style: none; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" target="_hplink">less that 10 percent</a><span class="Apple-converted-space"> </span>of that 2 billion dollars funding childhood cancer research, or less that<a href="http://www.cancer.gov/cancertopics/factsheet/NCI/research-funding" style="border: 0px currentColor; color: #5e3786; cursor: pointer; list-style: none; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" target="_hplink"><span class="Apple-converted-space"> </span>5 percent</a>of the<span class="Apple-converted-space"> </span><a href="http://www.opensecrets.org/bigpicture/" style="border: 0px currentColor; color: #5e3786; cursor: pointer; list-style: none; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" target="_hplink">6 billion</a>-dollar-cost of 2012 government elections. And just<span class="Apple-converted-space"> </span><a href="http://www.stbaldricks.org/filling-the-funding-gap/" style="border: 0px currentColor; color: #5e3786; cursor: pointer; list-style: none; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" target="_hplink">4 percent<span class="Apple-converted-space"> </span></a>of the total cancer funding goes to pediatric cancer. Also scary to think about, 60 percent of all funding for drug development for adult cancers comes<span class="Apple-converted-space"> </span><a href="http://www.stbaldricks.org/filling-the-funding-gap/" style="border: 0px currentColor; color: #5e3786; cursor: pointer; list-style: none; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" target="_hplink">from pharmaceutical companies</a>. What is the percentage of funding for drug development from pharmaceutical companies for childhood cancer research? Almost<span class="Apple-converted-space"> </span><a href="http://www.stbaldricks.org/filling-the-funding-gap/" style="border: 0px currentColor; color: #5e3786; cursor: pointer; list-style: none; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" target="_hplink">zero</a>. Why? Because children's cancer drugs<span class="Apple-converted-space"> </span><a href="http://www.stbaldricks.org/filling-the-funding-gap/" style="border: 0px currentColor; color: #5e3786; cursor: pointer; list-style: none; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" target="_hplink">aren't profitable.</a><span class="Apple-converted-space"> </span>Ouch.</div>
<div style="-webkit-text-stroke-width: 0px; background-color: white; border: 0px currentColor; color: black; font-size-adjust: none; font-stretch: normal; font: 15px/21px Georgia, Century, Times, serif; letter-spacing: normal; list-style: none; margin: 0px 0px 14px; padding: 0px; text-align: justify; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
There is some awareness for ya!</div>
<div style="-webkit-text-stroke-width: 0px; background-color: white; border: 0px currentColor; color: black; font-size-adjust: none; font-stretch: normal; font: 15px/21px Georgia, Century, Times, serif; letter-spacing: normal; list-style: none; margin: 0px 0px 14px; padding: 0px; text-align: justify; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
So, back to my issue with this "awareness" word. The movement I want to start is this... Let's maybe change what your September looks like. Print a picture of my daughter. Tape it to the back of the doors in your house. That's right, the front door and the back door. Every time you walk out the door, take a look at her.</div>
<div class="separator" style="clear: both; text-align: justify;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRi7ySUVGmtwwgkDNyxJ03rMBdhA6GlXYjNbNM088ou5VvHqUioRfQHiGrfZ2rvpohtZVbChdDef66gEiU7rxGzZnMo7ioSkiND-AeDsGyB8BOMM4Oz6P2r47S4J1oB68TcbNrtCcZTsk/s1600/2013-09-04-Isabella_Santos.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRi7ySUVGmtwwgkDNyxJ03rMBdhA6GlXYjNbNM088ou5VvHqUioRfQHiGrfZ2rvpohtZVbChdDef66gEiU7rxGzZnMo7ioSkiND-AeDsGyB8BOMM4Oz6P2r47S4J1oB68TcbNrtCcZTsk/s400/2013-09-04-Isabella_Santos.jpg" width="400" /></a></div>
<div style="-webkit-text-stroke-width: 0px; background-color: white; border: 0px currentColor; color: black; font-size-adjust: none; font-stretch: normal; font: 15px/21px Georgia, Century, Times, serif; letter-spacing: normal; list-style: none; margin: 0px 0px 14px; padding: 0px; text-align: justify; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
She died in my bed on a Thursday morning around 9:30 while her little brother was at camp at the YMCA. She was 7 years old. She died about 80 years early. She also died because she ran out of treatment options. She died because her cancer has very little funding and her drugs aren't profitable.</div>
<div style="-webkit-text-stroke-width: 0px; background-color: white; border: 0px currentColor; color: black; font-size-adjust: none; font-stretch: normal; font: 15px/21px Georgia, Century, Times, serif; letter-spacing: normal; list-style: none; margin: 0px 0px 14px; padding: 0px; text-align: justify; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
Look at her picture when you walk out the door for your awareness. "Awareness." Check. But then, when you get in your car to take the kids to school, go to work, go to the gym... think about something you can do that is ACTION. Forget awareness. September is Childhood Cancer "ACTION" Month. Do something that day that is action to save a child's life. Sign up for race, make a donation, research what is really going on, ask your friends to help, talk about it, have a lemonade stand, write your congressmen, help a family who has a child with cancer. Can't think of something to do for 30 days? Email me, I'll help you with your list.</div>
<div style="-webkit-text-stroke-width: 0px; background-color: white; border: 0px currentColor; color: black; font-size-adjust: none; font-stretch: normal; font: 15px/21px Georgia, Century, Times, serif; letter-spacing: normal; list-style: none; margin: 0px 0px 14px; padding: 0px; text-align: justify; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
Cancer is an epidemic in this country and I'm confused as to why people aren't freaking out more than they are. Probably because they don't have it... yet. Or maybe because we are all so "aware" of cancer, but aren't taking action against it. Maybe we are all waiting for the future of cancer. In the new Matt Damon movie,<span class="Apple-converted-space"> </span><em style="border: 0px currentColor; font-style: italic; list-style: none; margin: 0px; padding: 0px;">Elysium</em>, set in an imagined future, a quick scan on your body just "SNAP," gets rid of it. The truth is, that is not even a remote possibility in your lifetime.</div>
<div style="-webkit-text-stroke-width: 0px; background-color: white; border: 0px currentColor; color: black; font-size-adjust: none; font-stretch: normal; font: 15px/21px Georgia, Century, Times, serif; letter-spacing: normal; list-style: none; margin: 0px 0px 14px; padding: 0px; text-align: justify; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
Every day I'm aware. I'm aware that she's no longer with me. I'm aware that my 3-year-old daughter, Sophia, is inside coloring a picture for her right now. I'm aware that Isabella should be in the third grade this year. I'm aware that my husband lives in fear that he will never be able to love his children as much as he loved her. I'm aware that my 6-year-old, Grant, has nightmares about her. I'm aware that every day for the rest of my life I'm going to feel like there is something missing. I'm aware of a lot. So, the word "awareness" works really well for me in my life. Describe my life in one word, actually, and it's probably "awareness."</div>
<div style="-webkit-text-stroke-width: 0px; background-color: white; border: 0px currentColor; color: black; font-size-adjust: none; font-stretch: normal; font: 15px/21px Georgia, Century, Times, serif; letter-spacing: normal; list-style: none; margin: 0px 0px 14px; padding: 0px; text-align: justify; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
So, let's not make this month about just liking a Facebook e-card about cancer or reading a family's caringbridge entry and then walking away. Let's all admit that awareness is just a legacy, bullsh*t word and lets all commit to making this month about action. Action saves lives, awareness does not. </div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com2tag:blogger.com,1999:blog-3065452285684189895.post-89207309798858975822013-09-07T23:42:00.001-04:002013-09-07T23:42:57.179-04:00Scan<div style="text-align: justify;">
<span style="font-size: large;">It's our third trip to Cincinnati. We decide to travel there every time when Joey needs a scan. I am extremly anxious when the day comes. But Joey is excited. He just enjoys flights and hotel. I often wonder, "Does he ever worry about the scan?" He never mention a word about it. Instead, he is looking forward to the icecream. Cincy has best icecream in the country.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">Got CT and MRI the first day. The appointment with the oncologist is in the morning the next day. I couldn't wait until the appointment. I felt myself almost running to the radiology department. Filled out a form to get a copy of everything. Printer was printing out the report. That printer was the slowest one I ever saw. The girl gave me 3 pages of report. I grabbed and read it. I could hear my heart. I was looking for the words I had been praying for every day. Praise Lord, I saw it. Decreased in size. I read those words one more time and compared the measurement. It's not a significant decrease, but all his tumor shrank. I could breathe now.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I ran out of the room and tossed the report to Luke. "I don't want to read the rest of it. I only know tumors shrink. Please circle those you don't understand and ask Dr. later." I was scared to read more because I don't want to see anything suspicous. Joey was playing games and didn't hear us. When Luke told him the result, he looked at me and said,"mom, you don't need to cry this time."</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">We saw Joey's oncologist and he is satisfied with the result. Joey will continue the drug until the scan 12 weeks later. Scan, scan, scan. I hate it so much. But we don't have other option.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">For 6 months, we finally have something positive. It's not a huge one, but significant enough for us to celebrate. God bless my boy. May Him have mercy on us.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">On the way back home, we went to the best icecream shop in Cincy. Joey was content.</span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com12tag:blogger.com,1999:blog-3065452285684189895.post-9095297514925742212013-09-02T12:15:00.000-04:002013-09-03T19:54:15.936-04:00Painting<div style="text-align: justify;">
<span style="font-size: large;">I love love this photo by my </span><a href="http://www.flickr.com/photos/mindfeather/with/9555797012/"><span style="font-size: large;">talented friend</span></a><span style="font-size: large;">. It looks like an oil painting. Use my friend's words:<br />this is a shot of Joey, a dear friend of my family, who is fighting cancer. The background is made from a flower vendor stall in NYC, and a few other bits. In making Joey partially translucent here, the intention is to show that the colors of imagination and strength which are inside him have a way of shining out and painting the world around him. he not yet ten years old, and he is already my teacher.</span></div>
<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii2OcV57mETJcPDA9mOxxNtHFBwmW5n6v4kWet6vzIlQT8KFStTo3jLRiHGAsnwtVTEC33NmAwQjoViOLMXktYeD2u3JItppM_XXZt5uzs10U_ZOMUMvlw2DRYd9hHCk1x2S3-pja7qTk/s1600/Joey.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii2OcV57mETJcPDA9mOxxNtHFBwmW5n6v4kWet6vzIlQT8KFStTo3jLRiHGAsnwtVTEC33NmAwQjoViOLMXktYeD2u3JItppM_XXZt5uzs10U_ZOMUMvlw2DRYd9hHCk1x2S3-pja7qTk/s400/Joey.jpg" width="400" /></a></div>
<div style="text-align: justify;">
<span style="font-size: large;">Joey loves to play colors too. I enjoy looking at his paintings, full of life, energy, vibration and beauty.</span> </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr1rp1d0qyaCe1XOeRfyktD0s6dihCCHikNicuzZt7LK0Tp5HRSb3dCWdtqWZRCCgfDcDm4pYMQ2wRy45VB3ItW8RlfoLLVRRvZihS0tIZ_TeChueqTHGmE_ZBupDmrhmeL5i80b8EXUM/s1600/garden.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="295" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr1rp1d0qyaCe1XOeRfyktD0s6dihCCHikNicuzZt7LK0Tp5HRSb3dCWdtqWZRCCgfDcDm4pYMQ2wRy45VB3ItW8RlfoLLVRRvZihS0tIZ_TeChueqTHGmE_ZBupDmrhmeL5i80b8EXUM/s400/garden.jpg" width="400" /></a></div>
<div style="text-align: justify;">
<span style="font-size: large;">He loves his first oil painting of garden so much and asked me to put it into a frame.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjya4iw8IgQNQ6qsEsSfNTFfXiO48hg-wzNT35WSlnaBllrENvMU1UQUZsFswprOI6bqgLSlZ1DLg8m2qUm6AwDRk8mdT9SbD5720D5N9ssBRbmGSJ72px69f5cE1Hy1VztomTnqf6SAEE/s1600/birds.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjya4iw8IgQNQ6qsEsSfNTFfXiO48hg-wzNT35WSlnaBllrENvMU1UQUZsFswprOI6bqgLSlZ1DLg8m2qUm6AwDRk8mdT9SbD5720D5N9ssBRbmGSJ72px69f5cE1Hy1VztomTnqf6SAEE/s400/birds.jpg" width="307" /></a></div>
<div style="text-align: center;">
<span style="font-size: large;">Life and freedom</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEignlFBNpt1JTDaoLUqJSCxG3sWGdoajNGZZoC0ExL-CsbEp53AungwfbFOdAWQx4dyel3bEj1lTAQrE_pYN6rBCwZei5qVGM0t7ciZ3SpTIepKochXlwIMYQhvsMl35kbRJLhTp4u2o6Q/s1600/elephant.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEignlFBNpt1JTDaoLUqJSCxG3sWGdoajNGZZoC0ExL-CsbEp53AungwfbFOdAWQx4dyel3bEj1lTAQrE_pYN6rBCwZei5qVGM0t7ciZ3SpTIepKochXlwIMYQhvsMl35kbRJLhTp4u2o6Q/s400/elephant.jpg" width="297" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;">shapes and colors</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">He likes to use bright colors, through which I see his passion and boldness, just like his personality. I actually wish he could draw a picture of himself in the future, at a graduation ceremony, a wedding, even with children. I need that image so much. I want to embed that image into my head, so I won't feel fear the first thing when I wake up in the morning and let that fear empty me the rest of the day.</span><br />
<span style="font-size: large;">Just like my friend says, imagination is the power, no matter how old you are. I want this power to lead my life. If I don't have it right now, I need to create it, with my boy.</span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com5tag:blogger.com,1999:blog-3065452285684189895.post-79846939043157637312013-09-02T00:32:00.004-04:002013-09-02T23:31:53.394-04:00September: childhood cancer awareness month<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC3CFoJZ4JMTPjKyts0q8Wz7rD2jDMGldkBna9jQufnKOBZgnrXS9WdYvQf6w8KLPNa8xHdh0ePWR2_4jFC3yfmJSb5rAxSUhmZnL6Qa5hbrAkO_lqK-_5_FIYydkbKCgM68VrthXGgtM/s1600/996911_10201314563282884_2139649573_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="134" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC3CFoJZ4JMTPjKyts0q8Wz7rD2jDMGldkBna9jQufnKOBZgnrXS9WdYvQf6w8KLPNa8xHdh0ePWR2_4jFC3yfmJSb5rAxSUhmZnL6Qa5hbrAkO_lqK-_5_FIYydkbKCgM68VrthXGgtM/s320/996911_10201314563282884_2139649573_n.jpg" width="320" /></a></div>
<div style="text-align: justify;">
<br />
<br />
<span style="font-family: inherit; font-size: large;">did you know?<br />• The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).</span></div>
<span style="font-family: inherit; font-size: large;"></span><br />
<div style="text-align: justify;">
<span style="font-family: inherit; font-size: large;"><br /></span>
<span style="font-family: inherit; font-size: large;">• Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS yet pediatric AIDS receives four times the funding that childhood cancer receives.</span></div>
<span style="font-family: inherit; font-size: large;">
<div style="text-align: justify;">
<br />
• On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.</div>
<div style="text-align: justify;">
<br />
• In the U.S., about 46 children and adolescents are diagnosed and 7 will die from a form of childhood cancer every single school day.</div>
<div style="text-align: justify;">
<br />
• The National Cancer Institute's federal budget=$4.6 billion. Pediatric cancers received less than 3% of it.</div>
<div style="text-align: justify;">
<br />
• Overall, one out of every five children diagnosed with cancer dies. In some forms of cancer, as few as one out of every five children will live.</div>
<div style="text-align: justify;">
<br />
• Childhood Cancers are cancers that primarily affect children, teens, and young adults.</div>
<div style="text-align: justify;">
<br />
• Approximately 20% of adults with cancer show evidence the disease has spread, yet nearly 80% of children show that the cancer has spread to distant sites at the time of diagnosis.</div>
</span><br />
<div style="text-align: justify;">
<br /></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com1tag:blogger.com,1999:blog-3065452285684189895.post-16337504121407624722013-08-17T23:39:00.002-04:002013-08-17T23:40:31.457-04:00100-wishes quilt<div style="text-align: justify;">
<span style="font-size: large;">In the mist of worries, anxieties and fear after Joey's recent scan, we received the most precious gift from friends and people we never met. One hundred family and friends donate a piece of fabric each along with a written wish for Joey. The quilter, a lady from New York, put all the squares (there are actually 120) into a gorgeous quilt. My friend, who came up with this idea, put the fabric samples and wishes into an album. There are quote, joke, Bible verse, poem, a saying or a wish from the heart.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3yS-_A0KDh1BpmacF3qcl8tADIq19Kqm_gz9l3yQ5-Sjj9Ld3OxEECJakr4aXGqeNld8n6FJIRJFhZgO7q3N2gL3RTN4o-b_QC7wC-Kz5RjJqMsQXkJ5vh3f8klYnd3qGtU_93LsUKms/s1600/060.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="192" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3yS-_A0KDh1BpmacF3qcl8tADIq19Kqm_gz9l3yQ5-Sjj9Ld3OxEECJakr4aXGqeNld8n6FJIRJFhZgO7q3N2gL3RTN4o-b_QC7wC-Kz5RjJqMsQXkJ5vh3f8klYnd3qGtU_93LsUKms/s400/060.JPG" width="400" /></a></div>
<div style="text-align: center;">
<span style="font-size: large;">Album</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinILGYlvN11fwn99oHgJDl97zYIESuxkokq_0LdT1_dWoggl8c_Dqd9iCeJnc2NwY7tSwM54VNynYffYcl-2vmd-kPUzCgFaOiEeOmGJNCHgmGUOuX30KKuibeaLiFdi3cctWS2DtXrlw/s1600/061.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="182" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinILGYlvN11fwn99oHgJDl97zYIESuxkokq_0LdT1_dWoggl8c_Dqd9iCeJnc2NwY7tSwM54VNynYffYcl-2vmd-kPUzCgFaOiEeOmGJNCHgmGUOuX30KKuibeaLiFdi3cctWS2DtXrlw/s400/061.JPG" width="400" /></a></div>
<div style="text-align: justify;">
<span style="font-size: large;">When we opened up the quilt, everyone was amazed by the beauty and workmanship. Joey saw violin, gator, Chinese characters, panda, Chinese food, soccer...all things he loves. The back of the quilt is dragon, which is symbol of strength, good luck and wisdom. Joey can't wait to check out the fabric and wishes in the album by his friends. He read the album the whole night.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0TL7rU2-XF1Je5Ak9iOL9EfeXt30jc7uzxd-k_bp0KIuSb-V_9lc-CAIQ9uzMxXnG4VP3hA3Jh_WSzMW2h8NvsuLUV8EYQdb28Mo7tMsadWG2vQHBkHgubAAdk_tHRNdliC42bKgPYUg/s1600/047.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="332" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0TL7rU2-XF1Je5Ak9iOL9EfeXt30jc7uzxd-k_bp0KIuSb-V_9lc-CAIQ9uzMxXnG4VP3hA3Jh_WSzMW2h8NvsuLUV8EYQdb28Mo7tMsadWG2vQHBkHgubAAdk_tHRNdliC42bKgPYUg/s640/047.JPG" width="640" /></a></div>
<div style="text-align: justify;">
<span style="font-size: large;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkVeL74tVpQH0_25ZdjLb8LcDbPIvw_PS_CX2xcuyroHd6L0goBEdmraQZn5j4AFu4NPN1G0rFPanwCW_Fjr3BtINCVmLVZQin9rt4Z399lG1WKRhJ39hImhwNWu9867XnGHhURgJGIoE/s1600/035.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="395" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkVeL74tVpQH0_25ZdjLb8LcDbPIvw_PS_CX2xcuyroHd6L0goBEdmraQZn5j4AFu4NPN1G0rFPanwCW_Fjr3BtINCVmLVZQin9rt4Z399lG1WKRhJ39hImhwNWu9867XnGHhURgJGIoE/s400/035.JPG" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp-m_og03C4pBaUizjrnQYl0aYPHVYYLW7R5jZ4hI7OIRyZME4YsA6YCtFSeho0dn7lpJF1PPXWHXfXnd6tCtRVDgkHfLwafsTJAzyGmWlT4KwM94RPrE74Qektl4ul1f59_k49kE2M8I/s1600/036.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp-m_og03C4pBaUizjrnQYl0aYPHVYYLW7R5jZ4hI7OIRyZME4YsA6YCtFSeho0dn7lpJF1PPXWHXfXnd6tCtRVDgkHfLwafsTJAzyGmWlT4KwM94RPrE74Qektl4ul1f59_k49kE2M8I/s400/036.JPG" width="400" /></a></div>
<div style="text-align: justify;">
<span style="font-size: large;">No words can express my thanks for people who made great efforts in this quilt. It lifted up the spirit of the whole family. When I feel down, I read the album. When I am worried, this quilt becomes my cozy comfort. May the luck, energy and good wishes from all the families and friends who contributed to the quilt surround Joey.</span><span style="background-color: white; color: #5421bb; font-family: 'Cherry Cream Soda'; font-size: 15px; line-height: 21px; text-align: center;"> </span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTo_LHN-QMbalukgBdK_x9IZV6yTCLCX6mrjEiZ2iYVBeLRVzkGNUwVssGZ74kcWiFbHbcmCYKC_gr5NuC0hyphenhyphenVeKaYfmTR0yxOj9_tjJQSvMG3qOOoXM0IrEwyOEK3PpCNrMHzW5SeI5E/s1600/057.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="286" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTo_LHN-QMbalukgBdK_x9IZV6yTCLCX6mrjEiZ2iYVBeLRVzkGNUwVssGZ74kcWiFbHbcmCYKC_gr5NuC0hyphenhyphenVeKaYfmTR0yxOj9_tjJQSvMG3qOOoXM0IrEwyOEK3PpCNrMHzW5SeI5E/s400/057.JPG" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-size: large;">Life is bitter sweet. </span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com6tag:blogger.com,1999:blog-3065452285684189895.post-13558173355250579902013-08-11T01:46:00.001-04:002013-08-12T19:30:58.438-04:00Thank you, Blue Skies!<div style="text-align: justify;">
<span style="font-size: large;">Two weeks before Joey's scan, we went to <a href="http://www.blueskiesministries.org/">Blue Skies Ministries</a>, which is a week long family retreats to bring the hope of Christ to families living through the challenges of pediatric cancer. I hesitated first when this opportunity came because I don't know what to expect when he sees other children with cancer. He actually never saw one, without hair or with port, in the clinic. Will that scare him? The night before the retreat, I decided to sign up at the last minute. We can't avoid this. He is 9 years old. This is part of his life and he needs to deal with it. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;">To my surprise, this summer turned out to be his best summer because of Blue Skies. Joey said, "Blue Skies is the best week ever in my life!" Thank you all, Blue Skies volunteers, for bringing tremendous support, comfort, fellowship, fun and the love of God to my family. Joey made so many friends and so did I. Blue Skies is in our wonderful memory.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">Day 1</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">When the car arrived in the facility by the ocean in the quiet city of Port St. Joe, we saw people wearing Blue Skies shirt cheering. Got off the car, we were surrounded by big smiles. Joey was excited. I saw m</span><span style="font-size: large;">y mom tearing up. She doesn't know any English. Love is universal, no matter what color the skin is and what language we speak. I smelled the air of the ocean and God's love is in the air.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">After dinner, we joined the lantern release. 12 families lighted and released </span><span style="font-size: large;">sky lanterns</span><span style="font-size: large;">. Gone with the wind is our worries, fear, anxiety... </span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh91CETHWgYq4fAta28YJUSP_Gk4joFIbffCpfoY3VzncANuVFRGTqDVbw1oAe5jjCtyDuPEsvpNrCkZVjCjfeJK3WF0na1ny_7DPm-i9corb2JCoxvf5SNC8agQIJJ4ZSqBEgvdha8fho/s1600/042.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh91CETHWgYq4fAta28YJUSP_Gk4joFIbffCpfoY3VzncANuVFRGTqDVbw1oAe5jjCtyDuPEsvpNrCkZVjCjfeJK3WF0na1ny_7DPm-i9corb2JCoxvf5SNC8agQIJJ4ZSqBEgvdha8fho/s400/042.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">hula hoop race</span></td></tr>
</tbody></table>
<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYPjF-m5pJT-T0fYRqMZlcvgbFffCi9zJkJTrW2qqWpqSczJ_9Hdp2qDBdMj1tORMNQWxCEugDK9vdrs4X-8E20-dFc-QNvXQ85MF2DC9qbO6WCuAgD2tgl8o9M5vNh6plDC_Iy-G49Fk/s1600/_mg_8345.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYPjF-m5pJT-T0fYRqMZlcvgbFffCi9zJkJTrW2qqWpqSczJ_9Hdp2qDBdMj1tORMNQWxCEugDK9vdrs4X-8E20-dFc-QNvXQ85MF2DC9qbO6WCuAgD2tgl8o9M5vNh6plDC_Iy-G49Fk/s640/_mg_8345.jpg" width="425" /></a></div>
<span style="font-size: large;">Dear Lord, we are throwing our burdens to you. No matter how huge the burden is, it is never going to be bigger than you. Your love NEVER fails. Please heal our hearts. We will suffer well. We will suffer well together.</span><br />
<span style="font-size: large;">Day 2</span><br />
<span style="font-size: large;">While Joey was having fun making new friends, we met other parents sharing our journey. Every time when we sat down and got ready to talk, I saw tearing eyes. Every family's story is so different, yet the spirit is the same. These families have been fighting for years. I admire their courage, faith and strength. I sobbed my heart out when they talked about chemo, surgery, pain, radiation, drug, side effect, relapse...I hate it. I just hate it so much. Cancer, you mess up these people's life. You take away so many things from these children: their physical abilities, food they love, graduation, even friendship. But you can't take away their smile. I wish you would vanish from the face of the earth and we would never need to utter the word again. I wish these children could live with their healthy bodies with loved ones, not to fear of you coming back. </span><br />
<span style="font-size: large;">Day 3</span><br />
<span style="font-size: large;">This is Joey's first horse-riding experience by the ocean. He is just so excited. These horses are well trained. Joey feels very proud of himself.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG9zEVG3gwhwfyjMLzm5sIHegBIC203hmWuiVVYt3uMbiGiGOT6mewN1Zquu9IchC6oimboUyU33vt2XLYX_UsizUJlNUG1ULOZzdh0elwA5V1XQvSkgBCsW5D6iCF210hJfcMsKRalVM/s1600/_DSC0387.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG9zEVG3gwhwfyjMLzm5sIHegBIC203hmWuiVVYt3uMbiGiGOT6mewN1Zquu9IchC6oimboUyU33vt2XLYX_UsizUJlNUG1ULOZzdh0elwA5V1XQvSkgBCsW5D6iCF210hJfcMsKRalVM/s400/_DSC0387.JPG" width="400" /></a></div>
<span style="font-size: large;">Walking behind them on the beach, I saw the coming storm. But no one cared. They were laughing and moving forward, with confidence. They are not afraid, even big waves are pounding and clouds blowing wind. They would never fall.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSNLIKcnhzD0FFa3JvhnOthoVjxEnm0cliR5k7cwjHPg9c9GzHWA28SX41bkj7LjyD2Qi2FvK4IYXuRBWPdKN3qCWO7h8XwKuLOYJmTOFmml-a-qUOGGpyFKY6IUzqfCqwUWbGpi0v7qM/s1600/IMG_6141.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSNLIKcnhzD0FFa3JvhnOthoVjxEnm0cliR5k7cwjHPg9c9GzHWA28SX41bkj7LjyD2Qi2FvK4IYXuRBWPdKN3qCWO7h8XwKuLOYJmTOFmml-a-qUOGGpyFKY6IUzqfCqwUWbGpi0v7qM/s400/IMG_6141.JPG" width="400" /></a></div>
<span style="font-size: large;">Day 4</span><br />
<span style="font-size: large;">Beach is always Joey's favorite family time. He still takes chemo pill during this trip, but his energy is contagious.</span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXmJBxWtUrFXhm0Fsw94L6C3hB04UcYNpuLBdqvhu-U00BbSwpLlzVC5ByyMCCG3NIKgaPJt3my5JADtjoFgwFvFZQntku4ArPx2wSXWhpKhxKgNg7gbucW0r8nePBUOiv6ZCYXDW_ceA/s1600/_DSC0635.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXmJBxWtUrFXhm0Fsw94L6C3hB04UcYNpuLBdqvhu-U00BbSwpLlzVC5ByyMCCG3NIKgaPJt3my5JADtjoFgwFvFZQntku4ArPx2wSXWhpKhxKgNg7gbucW0r8nePBUOiv6ZCYXDW_ceA/s400/_DSC0635.JPG" width="313" /></a></div>
<span style="font-size: large;">I forgot the name of the game. We were doing flour fight on the beach.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDh3mrfO21pZbDALoSNvUclb71MqN2RU5D11DnXEw0pSqQyyHAV9PW0tGkOFrhz6LjIK7fE5ZzMi-YpgFu1DwOYsB1lJswiGbEQcawlEMgpRAzv2mZtg5QDhEJhrpIDgUPBexZKlGlWJM/s1600/_DSC0689.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="241" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDh3mrfO21pZbDALoSNvUclb71MqN2RU5D11DnXEw0pSqQyyHAV9PW0tGkOFrhz6LjIK7fE5ZzMi-YpgFu1DwOYsB1lJswiGbEQcawlEMgpRAzv2mZtg5QDhEJhrpIDgUPBexZKlGlWJM/s400/_DSC0689.JPG" width="400" /></a></span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-size: large;">Day 5</span><br />
<span style="font-size: large;">Today is Joey's first experience of snorkeling. We caught some sea creatures that we never see before, like puffer fish, sea dollar. The other group even saw shark.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq7P1b3YM6eoUrbWKRhcgkehjF5cW0VjYtmP7FtN9ZRqfMV6tjfpPjebaSHFJw6h_6m2EwmLxpnJSwArVBE6aJYFjFmMnX0fjaxGiEJmLl13D9TxxkHfG2nHg_bBR-KBHV3F8E9TQXxds/s1600/P7180078.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq7P1b3YM6eoUrbWKRhcgkehjF5cW0VjYtmP7FtN9ZRqfMV6tjfpPjebaSHFJw6h_6m2EwmLxpnJSwArVBE6aJYFjFmMnX0fjaxGiEJmLl13D9TxxkHfG2nHg_bBR-KBHV3F8E9TQXxds/s400/P7180078.JPG" width="400" /></a></span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicYZzwCkaoy8ihH37Ql5bRMe8loIIM5EV6tUdhRxlQNr4DdJ70r82S_gEOjZHsW0C1QhELITiUVjz2bt0tHX7ELQxD4z6d-CAfG6NyQOo9vyCwvYOeG6PSQ5nvj-Ga0cc2MqLSj29vrjk/s1600/IMG_6199.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicYZzwCkaoy8ihH37Ql5bRMe8loIIM5EV6tUdhRxlQNr4DdJ70r82S_gEOjZHsW0C1QhELITiUVjz2bt0tHX7ELQxD4z6d-CAfG6NyQOo9vyCwvYOeG6PSQ5nvj-Ga0cc2MqLSj29vrjk/s400/IMG_6199.JPG" width="400" /></a><br />
<span style="font-size: large;">Look at what we found!</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtJyYz5hpWCnr4fkSddBdMo6cnmLvJlWka77Jm9G_Hh8yPF4QPtMswYIIpMVn_kZyYYp8XqWEamROHXozZVM326xFeprEGk53UFLvL8gNLK3pQr88NiFMZ5Yu9wg6LpYpFgmJBTsKkFzI/s1600/IMG_6230.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtJyYz5hpWCnr4fkSddBdMo6cnmLvJlWka77Jm9G_Hh8yPF4QPtMswYIIpMVn_kZyYYp8XqWEamROHXozZVM326xFeprEGk53UFLvL8gNLK3pQr88NiFMZ5Yu9wg6LpYpFgmJBTsKkFzI/s400/IMG_6230.JPG" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD6McMKAPynG_GR0DJVVOG3UGpDVd9ccL8AxuK-VKKcrNmYkvBqKml60iexxsiftRsi1ukoAUaRUxCqpS6pK2KAcNpbIyGoGPbUWaJONpMcXSdFsVmBHacPWerDWHDaIMkgfV1Rr_mBYU/s1600/IMG_6239.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD6McMKAPynG_GR0DJVVOG3UGpDVd9ccL8AxuK-VKKcrNmYkvBqKml60iexxsiftRsi1ukoAUaRUxCqpS6pK2KAcNpbIyGoGPbUWaJONpMcXSdFsVmBHacPWerDWHDaIMkgfV1Rr_mBYU/s400/IMG_6239.JPG" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggUtNEHMBSL9G7UAQilqJgAOPyIdVt5mobOyXzoOeQpkQ0_wBNtXIEmL3yWSCLcpvPFkUz2oNPNZBEueNDSFMiFzswx2Pkxk7ES7zsOj8mT35AGe04uVM2QGfWSzsUKA5GxuKTKQ_Dkgo/s1600/IMG_6243.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggUtNEHMBSL9G7UAQilqJgAOPyIdVt5mobOyXzoOeQpkQ0_wBNtXIEmL3yWSCLcpvPFkUz2oNPNZBEueNDSFMiFzswx2Pkxk7ES7zsOj8mT35AGe04uVM2QGfWSzsUKA5GxuKTKQ_Dkgo/s400/IMG_6243.JPG" width="400" /></a></div>
<span style="font-size: large;">Day 6</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">Kids put on a huge parade today. They decorated their scooters, bikes, wagons with shinning ribbons and put on face-painting, necklaces, bows to show their love to their country. Local police cars sounded the sirens to start the parade. </span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgavSrBaAfoZ_TiR0bVxL6dOgkQCRnTMxd4GJvnk8wHnWyHabfTyrztnLJF8AzDlM18pCaF9-31hymrAG5-qyb0fqMn1s3p6myKBHq0d3KGZdhyphenhyphenSAtVmvEPxDN4f4HZQxFYGD4pcvy6Fcw/s1600/_mg_9068.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgavSrBaAfoZ_TiR0bVxL6dOgkQCRnTMxd4GJvnk8wHnWyHabfTyrztnLJF8AzDlM18pCaF9-31hymrAG5-qyb0fqMn1s3p6myKBHq0d3KGZdhyphenhyphenSAtVmvEPxDN4f4HZQxFYGD4pcvy6Fcw/s400/_mg_9068.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEaTu4gpYgkHY_F0eAfNzj3hPHKcnbwZw0WFkqjedFlMgSYugMecOYSIXp_ksL7lcO-f-EICShFDp-gf_kWF2naK0Ys-X1FvkOXMau9Qz_wGiktbd4lzFV9VSCS7tL5SlDnHrcRHnTidU/s1600/_mg_9162.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEaTu4gpYgkHY_F0eAfNzj3hPHKcnbwZw0WFkqjedFlMgSYugMecOYSIXp_ksL7lcO-f-EICShFDp-gf_kWF2naK0Ys-X1FvkOXMau9Qz_wGiktbd4lzFV9VSCS7tL5SlDnHrcRHnTidU/s400/_mg_9162.jpg" width="400" /></a></div>
<span style="font-size: large;">Day 7</span><br />
<span style="font-size: large;">Time to say good-bye to our new friends. Joey asks when we can come again. I feel released seeing him enjoy playing with kids of same disease, but do not feel scared. I hope he can understand he is not along fighting. Life is tough and we will struggle. Or we can choose not to, but to enjoy the blue sky everyday.</span><br />
<span style="font-size: large;">Thank you, Blue Skies, for your efforts to provide families of pediatric cancer with fellowship, love and amazing support!</span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com5tag:blogger.com,1999:blog-3065452285684189895.post-86925994554412757822013-08-01T00:02:00.001-04:002013-08-01T11:59:33.108-04:00Tumor progression<div style="text-align: justify;">
<span style="font-size: large;">Woke up in the middle of the night and cried. I felt so scared I may lose my boy some day and I held on tight to the sheets and cried while everybody else in the house was sleeping.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">When we are enjoying the summer, Joey's tumors are growing quietly and agressively. CT scan shows all his tumors in chest, neck and stomach are bigger. His body doesn't respond to the oral chemo after two months. Surgery is not an option. Today when the Dr. showed us the images, I wanted to scream. I wanted to close my eyes and never need to see those creepy pictures. I felt abondaned again by God.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">Why? I have been trying so hard to get a sense of peace and faith. Dear Lord, please don't let them fade away. How long do I need to be tested?</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">Came back home from the long talk with the Dr. Joey was jumping up and down at the door and asked me why it took so long. I told him there are still tumors and we may need to switch to a different drug. He said, "no wonder I didn't feel anything from the drug!" </span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I ache, even he is still smiling the big smile like nothing happened. I am trapped into the whirlpool and all the emotions of fear, hatry, regret came to swallow me again. In the past three months, I took away the food he likes and made him drink smoothies out of 17 different fruits, vege and nuts almost everyday, which he hates. He swallowed 4 supplements everyday and didn't ask what they are for. He does Yoga once a week, which fortunately he likes. He even agrees to do tai chi with me although he thinks it boring and doesn't undertand why. I couldn't ask more from him. Sometimes when I am overwhelmed with all the information online, I began to loose common sense and believe stupid diet kids hate. Now I regret and feel suspicious if I gave him wrong food or supplement to make his tumors grow.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">Shands offers a phase I trial, which I don't quite undertand the rationale because it targets general cancer and the research shows the drug doesn't work with RCC patients. Joey's oncologist in Cincinnati is on vacation. I emailed him and he couldn't make decision until he sees the scan. Dana-farber's Dr. is on vacation too and can't be back until Aug. 20th. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I don't know who else I can talk to. I called NCI. Someone picked up the phone. It turned out he is the pediatric oncologist just joined NCI in July. He asked me to send all Joey's information. By the end of the day, he emailed me another clinical trial.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I don't know what comes next. It's midnight now. I just want to sleep. Sleeping is the only way I don't need to face this.</span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com7tag:blogger.com,1999:blog-3065452285684189895.post-28745735286026815532013-07-14T00:01:00.002-04:002013-07-14T00:25:34.594-04:00Friendship<div style="text-align: justify;">
<span style="font-size: large;">Joey had the happiest two weeks with his friend Mingkuan. The boy flew all the way from China with mom to see him. He had the best time ever since the diagnosis and so did I.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I never see two 9-year-olds can be this childish. They can sit there and do nothing but tell silly jokes for an hour, rapping or rhyming in Chinese. They share their "junk" from their treasure box. They even dance Gangnam Style frantically. Joey would rather skip all his camps to spend time with his friend.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicy2R0BYMxFL3tPmriJ6Jhw2bb4uyPGYEP6SBnxSZ_qSphoLhlO-72FK7ebPbVicPVSo1J0Eb2UJjgofHu94csG-NPCe4ozOprYiwp17nZZFioy0e1MS-F9U8Ff_MGPCdS9QdThvT6MBU/s1600/040.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div>
<div style="text-align: justify;">
<span style="font-size: large;">Mom is also my good friend. Her personality, her story and her love for her child inspire me. She encourages me to escape from the endless pains and worries, living a normal life, for Joey, for David and for this family. How I wish Mingkuan and mom can stay here forever. </span> </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi43tX9qdkRYEspECHFqcLGA1BB7I3fXt49UrqnOx7WVU3iLj7FS9dmCz86AQkQFm0gGlb4GSzTG5jWdKnKywsZco9dRF4FbRKwbTQMyKboI3JqSg7hF4icJI7XfEWI-3-X30Uz6qjS8i0/s1600/106.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi43tX9qdkRYEspECHFqcLGA1BB7I3fXt49UrqnOx7WVU3iLj7FS9dmCz86AQkQFm0gGlb4GSzTG5jWdKnKywsZco9dRF4FbRKwbTQMyKboI3JqSg7hF4icJI7XfEWI-3-X30Uz6qjS8i0/s400/106.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;"><span style="font-size: small;">Gator stadium</span></span></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0DHN6jDerLzsSVbURSDb3C0UpOB8jgQa9POn_BdDuJjgJdzbNAu2wCIW8-GpoP1KQvuzNRttlAN7m0ZPHVhH9wXCY98Zun1im3M2GuuSiD69wQYXPaqzH5kcAPY7iBAUQ5Zxkow_F0TA/s1600/132.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="286" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0DHN6jDerLzsSVbURSDb3C0UpOB8jgQa9POn_BdDuJjgJdzbNAu2wCIW8-GpoP1KQvuzNRttlAN7m0ZPHVhH9wXCY98Zun1im3M2GuuSiD69wQYXPaqzH5kcAPY7iBAUQ5Zxkow_F0TA/s400/132.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bat house</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQFU6y4PJrHfjBDbB_uVWJUqQQBWYuYa7PDYXvQme5lnOuh0y0YR_3ea7dKQZt0KCfKpSBnGZyJxXBoMhqgnZVnAshRu52NRprGePFslhaPv4sKtcOCPb1cN4U6H_-oCG17ejeJU0m3uw/s1600/IMG_5744.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQFU6y4PJrHfjBDbB_uVWJUqQQBWYuYa7PDYXvQme5lnOuh0y0YR_3ea7dKQZt0KCfKpSBnGZyJxXBoMhqgnZVnAshRu52NRprGePFslhaPv4sKtcOCPb1cN4U6H_-oCG17ejeJU0m3uw/s400/IMG_5744.JPG" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Farmers market</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju1_7vrA9XlEo4F5H7P19mjnjPD9oh9xQFjqUeQeBavMRjo_lhksKs7zzL5CxR6qBaEpkkwLC2_-hP3xq9OiaI9k3FWB-8uC210WBi8bP9_1ymi1jZeRRxcv1mhuXaq0JQSwNBP0VmMnk/s1600/IMG_5959.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju1_7vrA9XlEo4F5H7P19mjnjPD9oh9xQFjqUeQeBavMRjo_lhksKs7zzL5CxR6qBaEpkkwLC2_-hP3xq9OiaI9k3FWB-8uC210WBi8bP9_1ymi1jZeRRxcv1mhuXaq0JQSwNBP0VmMnk/s400/IMG_5959.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kennedy Space Center</td><td class="tr-caption" style="text-align: center;"></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCzUd8j-xNBGYl8QenwgVX3BucuqWjSg2JoAjrvN6aJvc7rDxKnkrqUABIpDYcLYktUILPkLX2nOIPED06bUAe-zkwkV62JJhGrs89w1jJTuzprKJioEFIPkutKVVdRYAhMKEJKs-RNjY/s1600/IMG_5586.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCzUd8j-xNBGYl8QenwgVX3BucuqWjSg2JoAjrvN6aJvc7rDxKnkrqUABIpDYcLYktUILPkLX2nOIPED06bUAe-zkwkV62JJhGrs89w1jJTuzprKJioEFIPkutKVVdRYAhMKEJKs-RNjY/s400/IMG_5586.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Disney Waterpark </td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicy2R0BYMxFL3tPmriJ6Jhw2bb4uyPGYEP6SBnxSZ_qSphoLhlO-72FK7ebPbVicPVSo1J0Eb2UJjgofHu94csG-NPCe4ozOprYiwp17nZZFioy0e1MS-F9U8Ff_MGPCdS9QdThvT6MBU/s1600/040.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicy2R0BYMxFL3tPmriJ6Jhw2bb4uyPGYEP6SBnxSZ_qSphoLhlO-72FK7ebPbVicPVSo1J0Eb2UJjgofHu94csG-NPCe4ozOprYiwp17nZZFioy0e1MS-F9U8Ff_MGPCdS9QdThvT6MBU/s400/040.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Epcot</td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBTBlEescGv3LHfBz9-AiO8loYAoTmqM7tFX0JH_-haOxe6ZKC-o7nAMYMJ2MtrmL0yZVB3gCSOvGg5kBhV2qutj-yEIPDHie89BGIs2MS9l5QLYqxdMy2XiWi4IwYZKHYJZjKfWtE-Nw/s400/IMG_5772.JPG" style="margin-left: auto; margin-right: auto;" width="400" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Walking to the future</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-size: large;"> The night before they left, Mingkuan cried. Joey pretended he was not sad. The next day, they said good-bye and hugged. After they left, Joey kept saying," I don't want him to go." Then he asked, "When can I see him again?" </span></div>
<div class="separator" style="clear: both; text-align: justify;">
<span style="font-size: large;">Dear Lord, thank you for wonderful friends. Thank you for the precious time Joey had with Mingkuan. I pray that you can give him more days, months, years to be with his friend. I pray that you can give his friend an opportunity to witness how he wins this battle. I pray that these two boys will grow into two fine young men supporting and loving each other. In the powerful name of Jesus, Amen.</span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com8tag:blogger.com,1999:blog-3065452285684189895.post-77471386538625373702013-06-19T12:59:00.002-04:002013-06-19T20:26:57.586-04:00I can trust God...<span style="font-size: large;">At Sunday school today, each kid got a card to fill out. It says I can trust God... This is what Joey put in his card:</span><br />
<span style="font-size: large;">I can trust God...</span><br />
<span style="font-size: large;">Medical problem</span><br />
<span style="font-size: large;">Safety</span><br />
<span style="font-size: large;">Siblings</span><br />
<span style="font-size: large;">Next year in school</span><br />
<span style="font-size: large;">Education</span><br />
<br />
<div style="text-align: justify;">
<span style="font-size: large;">I was surprised he put medical problem first. I had thought my energetic, playful and laid-back boy doesn't see his health as an issue. He did realize life is different now. If I were given this card, I would put exactly the same thing except that I would add "Joey's" in front of each of them.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">On the way back home, I heard the song <i>He Said</i> in Joy FM, "I won't give you more than you can take..." I heard the same thing in church before and more now: "God will never give you more than you can handle."</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">When I first heard it, I have doubt. Hmmm... What about those who lost their loved ones in an accident? Now in the time of pain, </span><span style="font-size: large;"><span style="font-size: large;">I have more doubts.</span> What about those parents who lost their children in the fight? And what about me? </span></div>
<div style="text-align: justify;">
<span style="font-size: large;">So I </span><span style="font-size: large;">looked into the Bible and read it's from 1
Corinthians 10:13: <i>No temptation has overtaken you except what is common
to us all. And God is faithful; he will not let you be tempted beyond
what you can bear. But when you are tempted, he will also provide a way
out so that you can endure it.</i> I read the chapter again and again and realized the quote is never in the Bible.</span></div>
<div style="text-align: justify;">
<br />
<span style="font-size: large;">Why I have doubts? Because everyday I am learning the opposite is true.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">If God is only giving me what I can handle, I'll never have to find God.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">If God is only giving me what I can handle, I will stay in my comfort zone forever.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">If God is only giving me what I can handle, I amn't growing.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">If God wants to show his presence in my life, he is going to give me more than I can handle.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;"> God is ALWAYS giving us more than we can handle. That’s because we were never intended to handle it. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;">But the good news is He doesn't give me more than God and I can handle! He is bigger than anything I can handle. He carries all my weigh. His plan is huge!</span></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span style="font-size: large;">I pray I can have simple faith like Joey's. Faith is faith. It is that simple. Faith is not a system of rewards of challenges and payoffs. It is a lifelong journey of fighting distress and moving forward with hope. The Bible reminds me while Joey's disease does not magically disappear because we have become followers of Christ, but we are promised that in the sufferings we are not alone. God does allow me to suffer things I can not bear...alone. And I do not have to bear them alone because our family is surrounded by a community of love that comforts us in the time of hardship.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I still love the song <i>He Said</i> and my heart is filled with incredible love of God when I listen to it. Things will happen in life that will test my faith, but I remember God always loves me.</span></div>
<div style="text-align: justify;">
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/Lmi9IBP209s?feature=player_embedded' frameborder='0'></iframe></div>
</div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com3tag:blogger.com,1999:blog-3065452285684189895.post-88933337658409550872013-06-12T00:01:00.005-04:002013-06-12T00:05:45.353-04:00Break<div style="text-align: justify;">
<span style="font-size: large;">Joey finished first month of oral chemo pill and is now on two weeks of break. His face looks yellowish, which is to be expected. Another adult patient who is taking the same pill warned me that the hair would turn to white some day, even the eyebrows, just as his. That weird picture popped up in my head, but was gone quickly. Life is too busy to think too much ahead.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I feel a little bit relaxed thinking he is on two weeks off the toxic drug. In these two weeks, I can give him supplement that I won't worry too much about the interaction. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;">All the tumors in Joey's body are in the lymphnodes. I kept thinking about if there is anything, either exercise, message or acupuncture, can help to make his </span><span style="font-size: large;">lymphatic system healthy. I googled every day, hoping to find something. To my surprise, I found it! The best exercise for the lymph system is <a href="http://www.chrisbeatcancer.com/rebounding/">rebounding</a>! </span></div>
<div style="text-align: justify;">
<span style="font-size: large;">"Lymph nodes are like holding stations that filter the
lymph fluid. Every day we are bombarded with toxins in our environment and in our
food which is why detoxification is such a critical process in your
body. If the detox process is hindered, toxins will build up in your
body eventually causing acidity and toxemia. These are the root causes of nearly all disease. One of the lesser talked about benefits of exercise is that it moves
your lymphatic fluid, which promotes detoxification in your body. Rebounding creates an increased gravitational load
and positively stresses every cell in your body. As a result, it
strengthens your entire musculoskeletal system and it promotes lymphatic
circulation by stimulating the millions of one-way valves in your
lymphatic system."</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">Then I kept searching to see if this is just media hype. I </span><span style="font-size: large;">read many cancer survival testimony and saw the word rebounding again and agian. I figured since so many natural survivors and health practitioners were doing rebounding, it worths a try.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">We can't afford a rebounder, so I bought a trampoline from walmart. Joey loves it! He is always a jumper. Classmates call him jumping Joey.</span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPl8yYV72Kr32YdJGz5dtWUpLjAVTnyGlSNcw48t4UTimaq6q4ZXOuj4TciX9YN6IDISPWe1EYjCT6ikSWIfyUrLrB_Ab8nO-rcBa4biKKAF7gCzCXFUj9ol4unfh-CPfqxiTxEiL-kqI/s1600/012.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPl8yYV72Kr32YdJGz5dtWUpLjAVTnyGlSNcw48t4UTimaq6q4ZXOuj4TciX9YN6IDISPWe1EYjCT6ikSWIfyUrLrB_Ab8nO-rcBa4biKKAF7gCzCXFUj9ol4unfh-CPfqxiTxEiL-kqI/s320/012.JPG" width="213" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPl8yYV72Kr32YdJGz5dtWUpLjAVTnyGlSNcw48t4UTimaq6q4ZXOuj4TciX9YN6IDISPWe1EYjCT6ikSWIfyUrLrB_Ab8nO-rcBa4biKKAF7gCzCXFUj9ol4unfh-CPfqxiTxEiL-kqI/s1600/012.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDOELPm7Hsrkyb6T9-jKCKCRGMq2ZsHyq2kVD465CCu0Ro71OIBcoPEWgZRYaxjLMhs46a7ssWsWmSrH4UfScxTACLacXELxRIr_aVzfraAuU3BQPsfzhk99oVrvu9_ksKQ3bMhGk0H2A/s1600/018.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDOELPm7Hsrkyb6T9-jKCKCRGMq2ZsHyq2kVD465CCu0Ro71OIBcoPEWgZRYaxjLMhs46a7ssWsWmSrH4UfScxTACLacXELxRIr_aVzfraAuU3BQPsfzhk99oVrvu9_ksKQ3bMhGk0H2A/s320/018.JPG" width="212" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0hleD0QqkXMpu-g87r3DtUXe8qtTi7YmyMBFcn0bxb1GEHSrs3EJ9-dYI1Vprx4xUO4QDOLchhQLMQxLrp9LZnwloEzaBeHgpjXF5xNBcx_Z7__W0DH-8Rh69k8TSBRGT71r-Lq91XaI/s1600/017.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0hleD0QqkXMpu-g87r3DtUXe8qtTi7YmyMBFcn0bxb1GEHSrs3EJ9-dYI1Vprx4xUO4QDOLchhQLMQxLrp9LZnwloEzaBeHgpjXF5xNBcx_Z7__W0DH-8Rh69k8TSBRGT71r-Lq91XaI/s1600/017.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0hleD0QqkXMpu-g87r3DtUXe8qtTi7YmyMBFcn0bxb1GEHSrs3EJ9-dYI1Vprx4xUO4QDOLchhQLMQxLrp9LZnwloEzaBeHgpjXF5xNBcx_Z7__W0DH-8Rh69k8TSBRGT71r-Lq91XaI/s1600/017.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0hleD0QqkXMpu-g87r3DtUXe8qtTi7YmyMBFcn0bxb1GEHSrs3EJ9-dYI1Vprx4xUO4QDOLchhQLMQxLrp9LZnwloEzaBeHgpjXF5xNBcx_Z7__W0DH-8Rh69k8TSBRGT71r-Lq91XaI/s320/017.JPG" width="212" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8TAoB060Zsbd7Rxv7X__U0R3N9BlY9srD3ffEa4vM4cj5tOR0bSiiUus3nLHwoav0-pQTeLKzPturt3zeCeg1GpCJRUEvYBwLozTyNrz2xzJL0YzZAmKOAVftnHIMda_Zz8BrGGXnIoY/s1600/009.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8TAoB060Zsbd7Rxv7X__U0R3N9BlY9srD3ffEa4vM4cj5tOR0bSiiUus3nLHwoav0-pQTeLKzPturt3zeCeg1GpCJRUEvYBwLozTyNrz2xzJL0YzZAmKOAVftnHIMda_Zz8BrGGXnIoY/s320/009.JPG" width="212" /></a></div>
<span style="font-size: large;">I love to see him jump. The house is full of energy, because of Joey.</span>Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com7tag:blogger.com,1999:blog-3065452285684189895.post-1649560414878933332013-05-28T22:59:00.001-04:002013-05-28T23:00:29.812-04:00Oral chemotherapy<span style="font-size: large;">Joey has been on oral chemotherapy drug for 3 weeks now. It's a small capsule once a day. The immune system won't be down too much as the conventional chemo, so he can go to school and do things normally as before. </span><br />
<div style="text-align: justify;">
<span style="font-size: large;">On Saturday, he had a fever. I freaked out. He has been coughing and has stuffy nose for a couple of days. I dread fever may come. I know a fever could be dangerous during chemo. I called the oncologist right away and we were at the ER 30 minutes later. Because he has a port in his body, they need to find out if it's line infection, blood infection or flu. After blood work, urine test, X-ray and nasal swab test, it turned out to be flu. The oncologist gave us the presciption of 2 Tamiflu pills a day for 5 days.</span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcH2LiVte4SAhV7bUKYDtk-vu6QWl1jzQLqJGxGmJ9WjlkiSfZ65t8bjgnf9lb_o2fthFXioLfsruL625DPTLGU8VW50FosTdD5FrS5bJ2P3LwNxGADGHcYu9nTyQWN02mGCQdTjKOU10/s1600/CIMG0019.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcH2LiVte4SAhV7bUKYDtk-vu6QWl1jzQLqJGxGmJ9WjlkiSfZ65t8bjgnf9lb_o2fthFXioLfsruL625DPTLGU8VW50FosTdD5FrS5bJ2P3LwNxGADGHcYu9nTyQWN02mGCQdTjKOU10/s320/CIMG0019.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">At ER after a fever</span></td></tr>
</tbody></table>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span style="font-size: large;">I always bring with me names of drug Joey can't take because he has only one kidney and also names of those might interact with his chemo pill. I checked with the ER doctor and the oncologist and they said Tamiflu is fine and he needs it. Four hours later, we were at the CVS. I double checked with the pharmacist and showed him all the names of drug hard on kidney. He said immediately, "then I would suggest one Tamiflu a day, not two." He paused a second then said," If it's my child, I would not use Tamiflu with him. It doesn't worth the risk." "Why?" I asked. "A flu is a flu. All the studies show Tamiflu only shortens the flu one day." But the ER doctor and oncologist know about Joey's situation and recommended it. I asked the pharmacist to call ER to make sure. He came back saying the doctor recommended at least one capsule a day.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">Now what should I do? Take it or not take it? The instinct tells me not to take it and Luke's first reaction is also not to take it. In these two months, t</span><span style="font-size: large;">he biggest thing I have learned from other parents is that you have to be
your child's advocate. If your gut tells you something isn't right,
don't stop when a Dr. downplays it. A mom once told me that doctors do not know everything. You
know your
child far better than they ever can. There is a difference between
paranoid worry and instinct. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;">But at what point I need to trust my instinct and when I need to trust Dr. I follow mommy instinct to choose an oncologist, a treatment plan, and which drug he needs. What if my instinct is wrong?</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I went home googling the interaction of Tamiflu and the chemo pill. I actually found a study about interaction of these two drugs. After reading that study, we decided to not to give him Tamiflu. But I was scared.</span></div>
<div style="text-align: justify;">
<span style="font-size: large;">The fever was gone the next day, which surprised me since it's a flu. We had a quiet long weekend and Joey went to school on Tuesday. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;">I pray everyday that God gives us guidance that we can make right decision for him.</span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com4tag:blogger.com,1999:blog-3065452285684189895.post-84484528634864096792013-05-16T23:03:00.001-04:002013-05-16T23:05:27.032-04:00Conference<div style="text-align: justify;">
<span style="font-size: large;">It's my first time in DC. Think of bringing Joey to DC visiting museums many times, but never see myself in DC alone. The internatioal conference on pediatric renal tumor is here with a family day for the first time. Thursday's evening reception was held in the Children's National Medical Center, from where I can see White House<span style="font-size: large;"> and</span> <span style="font-size: large;">Lincoln Memorial. But I have no mood for the great view. </span></span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-size: large;">Pediatric oncologists from <span style="font-size: large;">States, UK, Germany, Canada, Israel, </span>Sweden<span style="font-size: large;"> atten<span style="font-size: large;">ded</span> the confere<span style="font-size: large;">nce. Joey's oncolog<span style="font-size: large;">ist is the panel member. </span>I can see their passion<span style="font-size: large;"> to find a cure f<span style="font-size: large;">or our kids. Every<span style="font-size: large;">one is excited ex<span style="font-size: large;">changing ideas, talking about new drug development<span style="font-size: large;"> and future co<span style="font-size: large;">operation. There are 45 families in the conference, only 3 have children with <span style="font-size: large;">the <span style="font-size: large;">same subtype <span style="font-size: large;">as</span> Joey.</span></span></span></span></span></span></span></span></span></span></span></span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Friday's conference is very technical. I wish I had a wikep<span style="font-size: large;">e</span>d<span style="font-size: large;">i<span style="font-size: large;">a machine installed in my <span style="font-size: large;">head. Honestly, I have no idea what they are talking about. By reading the abstrat, I understand they discuss t<span style="font-size: large;">he statistics, implications of the<span style="font-size: large;">ir research, <span style="font-size: large;">new drug<span style="font-size: large;">, etc and they </span></span></span></span><span style="font-size: large;">question each other. Afternoon session is less complicated.<span style="font-size: large;"> It's nice to see d<span style="font-size: large;">octors from all over w<span style="font-size: large;">orld ag<span style="font-size: large;">ree to work <span style="font-size: large;">together. They call for <span style="font-size: large;">parents' power to put forward the res<span style="font-size: large;">e<span style="font-size: large;">arch. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Sitting among these parent advocates, I felt their frustration and pain<span style="font-size: large;">.<span style="font-size: large;"> We are at the mercy of the drug companies. Whether or n<span style="font-size: large;">ot they decide to produce <span style="font-size: large;">a new drug depends on how <span style="font-size: large;">much profit it w<span style="font-size: large;"><span style="font-size: large;">ill</span> b<span style="font-size: large;">ring</span>. In the past 30 years, only one new d<span style="font-size: large;">rug was developed to treat children with c<span style="font-size: large;">ancer. Two-<span style="font-size: large;">thirds of child<span style="font-size: large;">hood cancer survivors <span style="font-size: large;">suffer from sever<span style="font-size: large;">e<span style="font-size: large;">, chronic<span style="font-size: large;"> medical condition or secondary cancer. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Friday night, I had dinner with other parents in <span style="font-size: large;">the city of Bethesda. <span style="font-size: large;">It was a fa<span style="font-size: large;">ncy restaurant with a <span style="font-size: large;">huge outdoor area. The dinner was full of laughter when they <span style="font-size: large;">talked a<span style="font-size: large;">bout the cra<span style="font-size: large;">z<span style="font-size: large;">y</span> things they did after the diagnosis.<span style="font-size: large;"> We looked like happy people <span style="font-size: large;">joking and laughing out loud<span style="font-size: large;"><span style="font-size: large;">, but no passer-by would know the gr<span style="font-size: large;">eat pain behind.<span style="font-size: large;"> </span></span></span><span style="font-size: large;">Their s<span style="font-size: large;">tories are insp<span style="font-size: large;">irational.<span style="font-size: large;"> One dad <span style="font-size: large;">shared h<span style="font-size: large;">ow he found a res<span style="font-size: large;">earch in the other country, <span style="font-size: large;">brought that study to the atten<span style="font-size: large;">tion of doctors here<span style="font-size: large;">, push the drug company and move it toward a clinical trial phrase. These people are truely heroes of their children.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Most of the parents <span style="font-size: large;">at the ta<span style="font-size: large;">ble <span style="font-size: large;">saw how their child suffer from the chemo. <span style="font-size: large;">When they de<span style="font-size: large;">scribed how they couldn't recognize their own child duri<span style="font-size: large;">ng the chemo, I <span style="font-size: large;">cried. My pa<span style="font-size: large;">in is nothing c<span style="font-size: large;">ompared to their<span style="font-size: large;">s. <span style="font-size: large;">How much faith and strength it takes to see their own child turn black, skin fall<span style="font-size: large;"> off, mouth swollen as big as head and hair gone. I ask myself: if this happens to Joey, can I be as st<span style="font-size: large;">rong as them? I can't even imagine th<span style="font-size: large;">at horrible picture.<span style="font-size: large;"> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">These people are super<span style="font-size: large;">parents. </span>One <span style="font-size: large;">old couple <span style="font-size: large;">adopted 7 child<span style="font-size: large;">ren, one of them had the same type of cancer as Joey and the other boy has a life-t<span style="font-size: large;">hreatening disease.<span style="font-size: large;"> The<span style="font-size: large;">y adopt<span style="font-size: large;">ed the girl when she <span style="font-size: large;">had the <span style="font-size: large;">cancer. </span></span></span></span></span>Another <span style="font-size: large;">mom <span style="font-size: large;">has 8 children, 4 of them <span style="font-size: large;">are adoptive and <span style="font-size: large;">one of <span style="font-size: large;">her bi<span style="font-size: large;">ological chi<span style="font-size: large;">ld has cancer. She often grab<span style="font-size: large;">s</span> all her kids in <span style="font-size: large;">car and drives to the hospital. <span style="font-size: large;">In spite of <span style="font-size: large;">all these, they <span style="font-size: large;">never stop fighting for their <span style="font-size: large;">children. They <span style="font-size: large;">keep asking questions<span style="font-size: large;"> and</span> finding best treat<span style="font-size: large;">ment possible.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">I couldn't sleep that night when I thought of the <span style="font-size: large;">suffering these fam<span style="font-size: large;">ilies have been through. I cried out for hope, for magic healing of these children. <span style="font-size: large;">Jesus, please help these parents, help us go <span style="font-size: large;">through the uncertain future.<span style="font-size: large;"> <span style="font-size: large;">Everyday<span style="font-size: large;">, 46 children and tee<span style="font-size: large;">nagers are diagnosed with cancer. Jesus,<span style="font-size: large;"> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">I want to h<span style="font-size: large;">old your hand to stop child<span style="font-size: large;">hood cancer. You have the mercy to my boy so he <span style="font-size: large;">has strong spirit to fight. Please give mercy to <span style="font-size: large;">other children who are going through chemo. Please wrap your arm around their parents. I pray that ch<span style="font-size: large;">emo saves their life<span style="font-size: large;"> and brings back a he<span style="font-size: large;">althy child to their family.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><br /></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><!--[if gte mso 9]><xml>
<w:WordDocument>
<w:View>Normal</w:View>
<w:Zoom>0</w:Zoom>
<w:TrackMoves/>
<w:TrackFormatting/>
<w:PunctuationKerning/>
<w:ValidateAgainstSchemas/>
<w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid>
<w:IgnoreMixedContent>false</w:IgnoreMixedContent>
<w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText>
<w:DoNotPromoteQF/>
<w:LidThemeOther>EN-US</w:LidThemeOther>
<w:LidThemeAsian>ZH-CN</w:LidThemeAsian>
<w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript>
<w:Compatibility>
<w:BreakWrappedTables/>
<w:SnapToGridInCell/>
<w:WrapTextWithPunct/>
<w:UseAsianBreakRules/>
<w:DontGrowAutofit/>
<w:SplitPgBreakAndParaMark/>
<w:DontVertAlignCellWithSp/>
<w:DontBreakConstrainedForcedTables/>
<w:DontVertAlignInTxbx/>
<w:Word11KerningPairs/>
<w:CachedColBalance/>
<w:UseFELayout/>
</w:Compatibility>
<m:mathPr>
<m:mathFont m:val="Cambria Math"/>
<m:brkBin m:val="before"/>
<m:brkBinSub m:val="--"/>
<m:smallFrac m:val="off"/>
<m:dispDef/>
<m:lMargin m:val="0"/>
<m:rMargin m:val="0"/>
<m:defJc m:val="centerGroup"/>
<m:wrapIndent m:val="1440"/>
<m:intLim m:val="subSup"/>
<m:naryLim m:val="undOvr"/>
</m:mathPr></w:WordDocument>
</xml><![endif]--></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><!--[if gte mso 9]><xml>
<w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
DefSemiHidden="true" DefQFormat="false" DefPriority="99"
LatentStyleCount="267">
<w:LsdException Locked="false" Priority="0" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Normal"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="heading 1"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 2"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 3"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 4"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 5"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 6"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 7"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 8"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 9"/>
<w:LsdException Locked="false" Priority="39" Name="toc 1"/>
<w:LsdException Locked="false" Priority="39" Name="toc 2"/>
<w:LsdException Locked="false" Priority="39" Name="toc 3"/>
<w:LsdException Locked="false" Priority="39" Name="toc 4"/>
<w:LsdException Locked="false" Priority="39" Name="toc 5"/>
<w:LsdException Locked="false" Priority="39" Name="toc 6"/>
<w:LsdException Locked="false" Priority="39" Name="toc 7"/>
<w:LsdException Locked="false" Priority="39" Name="toc 8"/>
<w:LsdException Locked="false" Priority="39" Name="toc 9"/>
<w:LsdException Locked="false" Priority="35" QFormat="true" Name="caption"/>
<w:LsdException Locked="false" Priority="10" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" Priority="1" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" Priority="11" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" Priority="22" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" Priority="59" SemiHidden="false"
UnhideWhenUsed="false" Name="Table Grid"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" QFormat="true" Name="TOC Heading"/>
</w:LatentStyles>
</xml><![endif]--><!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-qformat:yes;
mso-style-parent:"";
mso-padding-alt:0in 5.4pt 0in 5.4pt;
mso-para-margin-top:0in;
mso-para-margin-right:0in;
mso-para-margin-bottom:10.0pt;
mso-para-margin-left:0in;
line-height:115%;
mso-pagination:widow-orphan;
font-size:11.0pt;
font-family:"Calibri","sans-serif";
mso-ascii-font-family:Calibri;
mso-ascii-theme-font:minor-latin;
mso-hansi-font-family:Calibri;
mso-hansi-theme-font:minor-latin;}
</style>
<![endif]--><span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: 宋体; mso-fareast-language: ZH-CN; mso-fareast-theme-font: minor-fareast; mso-hansi-theme-font: minor-latin;"><br /></span></span></span> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<div style="text-align: justify;">
<br /></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com3tag:blogger.com,1999:blog-3065452285684189895.post-32123515497698282962013-05-08T23:19:00.000-04:002013-05-09T08:14:51.095-04:00Thank you all, my dear friends!<div style="text-align: justify;">
<span style="font-size: large;">A wonderful friend of mine, a talented photographer, came to my house to take some pictures of Joey. He put <a href="http://www.flickr.com/photos/mindfeather/">Joey's pictures on Flickr</a> to spread the words. (Thank you, Garth! You are the best!) I put one of them on top of the blog. Here is another one. Joey looks like holding a sword and the shadow behind is my family. These pictures give me strength, comfort and love.
</span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsa3I5j2cW40qush6Ld02A4Kaur3m633I29MdPE-_EjjA36yddZw7YewsNn5DKq6HIQCDO53flMbRztieMehAlnoovh2IXkertARYVz382WhUdF0vDWufgC7iKDZsZSbhNahV9hSq6iMc/s1600/joey2b6+-+joey+violin.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" mwa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsa3I5j2cW40qush6Ld02A4Kaur3m633I29MdPE-_EjjA36yddZw7YewsNn5DKq6HIQCDO53flMbRztieMehAlnoovh2IXkertARYVz382WhUdF0vDWufgC7iKDZsZSbhNahV9hSq6iMc/s400/joey2b6+-+joey+violin.jpg" width="400" /></a></span></div>
<span style="font-size: large;">
</span></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span style="font-size: large;">In the very dark days of my life, I have tremendous support from friends and people I never met. Every day, my email box is full of greetings from far, encouragement, recipes, Bible verses,<span style="font-size: large;"> prayers, advice<span style="font-size: large;"> on financial situation...All these helps me bec<span style="font-size: large;">ome a "caregiver surviv<span style="font-size: large;">or". <span style="font-size: large;">Sometimes <span style="font-size: large;">w</span>h</span>en I feel so overwh<span style="font-size: large;">elmed with new responsibilites, I<span style="font-size: large;"> put down<span style="font-size: large;"> my head <span style="font-size: large;">in the elbow</span>, close my eyes, wtih a deep breath, think of my friends and move on. </span></span></span></span></span></span></span></span><br />
<br />
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">One day, I asked Joey how we can possibly thank all <span style="font-size: large;">these people who help us. To a lot of people, I don't even <span style="font-size: large;">know an address to mail th<span style="font-size: large;">ank you card. Joey said he would draw a picture to show appre<span style="font-size: large;">ciation. <span style="font-size: large;">Joey c<span style="font-size: large;">omplain<span style="font-size: large;">s about learning Chinese and doesn't enjoy reading a book in Chinese, but he is always fascinated by Chinese culture. So he decided to d<span style="font-size: large;">raw a Chinese imperial dragon. I told him this is the strongest d<span style="font-size: large;">ragon I <span style="font-size: large;">can eve<span style="font-size: large;">r imagine. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgweOsjEwtCo5MeFGYPrG0x5zXX_TWyC1bcLhR6EgagXPpJCC5JvmBvdPkeOXE8LEVo8tkWzKu0glwWqU8qt4yhOjn1G7Ku8tj4Y95vOucgA_oVKKTIDuX61lxkUu8gkhH1dDzPGmGeqd8/s1600/dragon+1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="466" mwa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgweOsjEwtCo5MeFGYPrG0x5zXX_TWyC1bcLhR6EgagXPpJCC5JvmBvdPkeOXE8LEVo8tkWzKu0glwWqU8qt4yhOjn1G7Ku8tj4Y95vOucgA_oVKKTIDuX61lxkUu8gkhH1dDzPGmGeqd8/s640/dragon+1.jpg" width="640" /></a></div>
</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"> Thank you, my friends. My boy will be as strong as a dragon and I will be as strong as him.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span> </span></div>
<br />Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com15tag:blogger.com,1999:blog-3065452285684189895.post-58052705313893429172013-05-04T11:21:00.001-04:002013-05-04T17:25:59.820-04:00Rollercoaster<span style="font-size: large;">Life is like a rollercoaster. One moment I feel my spirit lifted when I read the Bible or miracle stories of cancer survivors. The other moment I am completely crushed in tears. I feel swallowed by the waves of fear. When I am on tip of the wave, I am losing my boy. I extend my hands to try to catch him, but he is away little by little from me. When I am on the bottom of the wave, I am anxious about the coming of next wave. Lord, tell me, what can I do to step out of this endless fear? I can't let this ruin my life.</span><br />
<div style="text-align: justify;">
<span style="font-size: large;">The wave of fear swallowed me again when we got the result of Joey's petscan. It is not a big surprise for us thinking about the way tumors spread from kidney to neck. Pet scan shows more tumors in lymph nodes in para aorta, chest and neck. The biggest one is 2.7cm.</span><br />
<span style="font-size: large;">I have the picture in my head of those deadly tumors all over his tiny body. They are ugly, pervasive, attacking, but I tell myself they are not undefeatable. Joey has great personality to fight these tumors. He needs me as strong as him, as positive as him and as fearless as him.</span><br />
<br />
<span style="font-size: large;">Often at the end of the day, I feel so exhausted, I read the quote again and again sent by a Chinese friend:</span></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span id="yui_3_7_2_1_1367677215652_2937" style="font-size: large;">我们不能保证好人都能有好报,也不能保证坏人都能受到惩罚,但是,不要把目光盯在公平两个字上,就算老天是不公的,也要在不公的老天下面健康地活着。让老
天尽管来为难好人,它最好也能为难到底,最好为难得他们走投无路,使他们不得不从肋下生出羽翼来,不得不学会飞,直到无论什么样的险山恶水都再也无法阻挡
他们的去路.</span></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span style="font-size: small;"><span id="yui_3_7_2_1_1367677215652_2937"><span style="font-size: large;"><i>We can't promise that all the good peo</i><span style="font-size: large;"><i>ple can have a good life or evil </i><span style="font-size: large;"><i>people get punished. Please don't fix your eyes on fairness. Even there is no</i><span style="font-size: large;"><i> fairness in the world, </i><span style="font-size: large;"><i>please live a healthy life <span style="font-size: large;">in</span> th<span style="font-size: large;">is</span> unfair world. Let</i><span style="font-size: large;"><i> me we</i><span style="font-size: large;"><i>lcome a</i><span style="font-size: large;"><i>ll the odds with a</i><span style="font-size: large;"><i> fearless spi</i><span style="font-size: large;"><i>rit</i><span style="font-size: large;"><i>. I wish all these odds </i><span style="font-size: large;"><i>can be as<span style="font-size: large;"> persistent as me, so</span> I would be driven into a corner, with wings coming out of my arms. So I</i><span style="font-size: large;"><i> </i><span style="font-size: large;"><i>have to learn how to fly.</i><span style="font-size: large;"><i><span style="font-size: large;"> I would fly with my f<span style="font-size: large;">earlessness<span style="font-size: large;">. Then there will be no obstale in my way<span style="font-size: large;">!</span></span></span></span></i></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><span id="yui_3_7_2_1_1367677215652_2937"><span style="font-size: large;"> </span></span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com4tag:blogger.com,1999:blog-3065452285684189895.post-55051285165892570542013-04-28T23:26:00.002-04:002013-04-28T23:26:24.236-04:00Saturday<div style="text-align: justify;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglmITDlxUQKsi80FcKMQUu7AgPmxpU5zAcAxs9cYragW038ccfOlRo8SylCOp7rH6D8l_-S3qZUi2kFcHh4e5q_4qLYdGJ-aMUU_tI0Iv_nODK49IgVf2iK8RovFBHab52EPOYmPWuLa8/s1600/CIMG0036.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglmITDlxUQKsi80FcKMQUu7AgPmxpU5zAcAxs9cYragW038ccfOlRo8SylCOp7rH6D8l_-S3qZUi2kFcHh4e5q_4qLYdGJ-aMUU_tI0Iv_nODK49IgVf2iK8RovFBHab52EPOYmPWuLa8/s320/CIMG0036.jpg" width="320" /></a><span style="font-size: large;">Today is a busy day. Joey is very excited he can make it in the math contest. When we were in hospital, nurses and doctors a<span style="font-size: large;">sked him <span style="font-size: large;">what his favorite subject is, he al<span style="font-size: large;">ways said math. T<span style="font-size: large;">oday b</span>oth 3rd and 4th grader<span style="font-size: large;">s too<span style="font-size: large;">k the same test and <span style="font-size: large;">the top 12 would be awarded. W<span style="font-size: large;">hen he came out, he said<span style="font-size: large;">, "I think I got it all <span style="font-size: large;">correct." I <span style="font-size: large;">actually talked to Luke before. We think we have a concerited boy. <span style="font-size: large;">He</span> is like this all the ti<span style="font-size: large;">me. Before any contest, run<span style="font-size: large;">ning, violin, math, he alw<span style="font-size: large;">ays <span style="font-size: large;">says he will w<span style="font-size: large;">in the first pri<span style="font-size: large;">z</span>e even though he is very clear his fri<span style="font-size: large;">end is much better than him<span style="font-size: large;">. It turned out he won the 12th p<span style="font-size: large;">lace. He is so happy, "<span style="font-size: large;">At le<span style="font-size: large;">ast, <span style="font-size: large;">I have a trophy!" This is him. He forgot what he predicted <span style="font-size: large;">right away.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho-gQFjWtMmoTNeYVTd31UE5JYS5Y9ytxRu4ogv218mXzmAuK5ndpLUQ9UaJdWwywZwF5UD52BG0npyV8we__SQf_Xq5xPhEGnZQjYT7Cvz3Ksx1bVS2_b6bgHcrYCtjzMDNaMX1RneDQ/s1600/CIMG0046.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho-gQFjWtMmoTNeYVTd31UE5JYS5Y9ytxRu4ogv218mXzmAuK5ndpLUQ9UaJdWwywZwF5UD52BG0npyV8we__SQf_Xq5xPhEGnZQjYT7Cvz3Ksx1bVS2_b6bgHcrYCtjzMDNaMX1RneDQ/s320/CIMG0046.jpg" width="240" /></a><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">We went to Chinese school a<span style="font-size: large;">fter the math contest. I <span style="font-size: large;">teach Joey's 3<span style="font-size: large;">rd grade Chinese. I miss kids in the class. They are wonderful children coming to school <span style="font-size: large;">every Saturday when <span style="font-size: large;">their friends might enjoy <span style="font-size: large;">we<span style="font-size: large;">ekend with family. I try to make the <span style="font-size: large;">class <span style="font-size: large;">fun and let them believe it worthy to spend two <span style="font-size: large;"><span style="font-size: large;">hours with me on Saturday. Tod<span style="font-size: large;">ay's <span style="font-size: large;">lesson is <span style="font-size: large;">a classic Chinese story about an old man in an<span style="font-size: large;">cient time<span style="font-size: large;"> </span></span>who was de<span style="font-size: large;">termined to move two mountains in front of his house<span style="font-size: large;"> by digging the dirt <span style="font-size: large;">away every<span style="font-size: large;"> day.<span style="font-size: large;"> <span style="font-size: large;">I aksed them<span style="font-size: large;">, "Do y<span style="font-size: large;">ou think he can make it?" Joey said, "<span style="font-size: large;">Yes, with God's help!"<span style="font-size: large;"> After reading the text, I asked them what they <span style="font-size: large;">figured <span style="font-size: large;">out from the story. Joey said,<span style="font-size: large;"> "Hang in there, never give up<span style="font-size: large;">!" A<span style="font-size: large;">o</span>ther kid said, "Trust yourself." At that moment, I was thinking: sweeth<span style="font-size: large;">eart, that is exactly what I want from you.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Pare<span style="font-size: large;">nt in the class brought a cake with Joey's n<span style="font-size: large;">ame on it. Chi<span style="font-size: large;">ldren in Joey's music <span style="font-size: large;">class brought flowers<span style="font-size: large;">, bal<span style="font-size: large;">loon and card. We hav<span style="font-size: large;">e a <span style="font-size: large;">wonderful community in <span style="font-size: large;">Chinese school.<span style="font-size: large;"> Thank y<span style="font-size: large;">ou, my friends!</span></span> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com4tag:blogger.com,1999:blog-3065452285684189895.post-37645087634106446952013-04-24T23:10:00.002-04:002013-04-24T23:18:42.602-04:003rd and 4th opinion<div style="text-align: justify;">
<span style="font-size: large;">When things are a little bit quiet down now, I keep looking for 3rd or 4th opinion. S<span style="font-size: large;">hands and C<span style="font-size: large;">CH have different diagnosis and treatme<span style="font-size: large;">nt plan. I need <span style="font-size: large;">a 3rd <span style="font-size: large;">and even 4th opinion to g<span style="font-size: large;">ive</span> me an assurance. Luke and me have <span style="font-size: large;">probably found all we can find online about <span style="font-size: large;">th<span style="font-size: large;">is ty<span style="font-size: large;">pe <span style="font-size: large;">o</span>f cancer. We read the paper with wikipedia and are not so sure how much we underst<span style="font-size: large;">a<span style="font-size: large;">nd<span style="font-size: large;">. <span style="font-size: large;">Since there aren't so much I can find from the o<span style="font-size: large;">fficial p<span style="font-size: large;">aper, I am thinking about patients. I believe <span style="font-size: large;">cancer patients and their families are the ones who are knowledg<span style="font-size: large;">able<span style="font-size: large;"> about everything, from <span style="font-size: large;">who is best specialist, new drug, cli<span style="font-size: large;">nical trials<span style="font-size: large;"> to <span style="font-size: large;">diet, alternative treatm<span style="font-size: large;">ent plans, because they are the<span style="font-size: large;"> ones fighting for th<span style="font-size: large;">eir lives.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Every night, <span style="font-size: large;">I <span style="font-size: large;">searched in <span style="font-size: large;">different cancer forums to look for <span style="font-size: large;">pat<span style="font-size: large;">ients of same subtype. It's not fun to join a cancer forum.<span style="font-size: large;"> It's heart<span style="font-size: large;">-wrenching to see someone posted a message, then a few <span style="font-size: large;">month</span>s later that person passed away. But I have to read them. There are posts of encouragement, posts of hope and posts of <span style="font-size: large;">great information. I finally found a good kidney cancer forum with a group of <span style="font-size: large;">cancer
warriors from all over the world. I posted question there and someone
emailed me right away. He mentioned a name from National Cancer
Institute, who is one of the <span style="font-size: large;">most</span> brilliant <span style="font-size: large;">m<span style="font-size: large;">inds <span style="font-size: large;">in kidney cancer research. I <span style="font-size: large;">emailed the doctor and c<span style="font-size: large;">alled his office right away. He emailed me back and sa<span style="font-size: large;">id they have a long term interest<span style="font-size: large;"> in th<span style="font-size: large;">is subtype and they are the one identifyed the gene for and descri<span style="font-size: large;">bed this type of cancer in 1996. <span style="font-size: large;">He said they have a team working on a treatment approach to this disorder. I will send him <span style="font-size: large;">everything I have so <span style="font-size: large;">far.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<div style="text-align: justify;">
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">At the same time, I contacted Dana-Farber. <span style="font-size: large;">RCC on<span style="font-size: large;">cologist already disc<span style="font-size: large;">ussed Joey's case yesterday at the meeting.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></div>
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">I p<span style="font-size: large;">ray that we can be<span style="font-size: large;">n<span style="font-size: large;">efit more from </span></span>these two institute<span style="font-size: large;">s.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span>Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com2tag:blogger.com,1999:blog-3065452285684189895.post-73217534068773506232013-04-24T23:09:00.002-04:002013-04-24T23:12:24.492-04:00Welcome home<div style="text-align: justify;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVCYs-sBORrBsPuE0QxTtwufyyqh3nK14SXWurtG3PSIrFIhsjfNkxKnCZNjVF8O_G3hec84q9eHVsKqrlZrisGl4VIcbUSVGghW_xvzRTtIvnvmgF9Dm_ysCax7hfr8AppzEhjGUvH7o/s1600/059.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVCYs-sBORrBsPuE0QxTtwufyyqh3nK14SXWurtG3PSIrFIhsjfNkxKnCZNjVF8O_G3hec84q9eHVsKqrlZrisGl4VIcbUSVGghW_xvzRTtIvnvmgF9Dm_ysCax7hfr8AppzEhjGUvH7o/s320/059.JPG" width="248" /></a><span style="font-size: large;">8 days after the surgery, Joey is ready to go home. He lost 4 pounds from 10 days of fast. He is tiny. I joked with him that maybe the tumors (about 20 removed from tummy) and kidney weigh 2lbs. On the way, I asked him who he wants to see most. He said Addie (our dog). And he said what he wants to eat most is icecream. </span></div>
<div style="text-align: justify;">
<span style="font-size: large;">When we arrived home, Joey got a surprise welcome from his friends from Boyscourts! They decorated the door. I saw a big smile in his face. He read out loud the names of his friends from the Den. He missed them so much.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg_GIIcLa3Q-ooYkT3PrQcCB6y9CYr4cT5LcXZUixUroJDSIf1nRfj5QU3RS-EAAyWmrHce7Qlu8xMd757hVXLgKcUtyvkv40sKPOXYDHXt-pMWn2rsew61TW9c3cCHzfDI72kbxAlK3k/s1600/064.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg_GIIcLa3Q-ooYkT3PrQcCB6y9CYr4cT5LcXZUixUroJDSIf1nRfj5QU3RS-EAAyWmrHce7Qlu8xMd757hVXLgKcUtyvkv40sKPOXYDHXt-pMWn2rsew61TW9c3cCHzfDI72kbxAlK3k/s400/064.JPG" width="400" /></a></div>
<div style="text-align: justify;">
<span style="font-size: large;">Joey will have a pet scan next week. I worry about radiation. Pet scan produces strong radiation to children. But we don't have other option. He will start the medication when he recovers. One side effect of that drug is to make the wound crack. So he needs to wait.</span></div>
<br />Kathyhttp://www.blogger.com/profile/04315195696515014840noreply@blogger.com3