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| | | December 12, 2010
| Facebook post:
4
Years ago today Lindsey had her surgery to remove her cancer! Thank
you Our Lady of Guadalupe! I can't belive it has been 4 years! My baby
girl is getting so big!
| November 15th, 2010
| Post from Facebook page:
I
can't believe I didn't post about what Lindsey said a few weeks ago. It
was so funny! The school mascot is a Beaver(no thats not the funny
part)& they had someone at school dress up like a Beaver to promote
the upcoming school carnival. Lindsey came home from school &was
very excited! She told me that she got to meet... the Beaver at school today. Then she said, "I think it was Justin Beaver". I was laughing so hard!!
| September 2010 Childhood Cancer Awareness Month
| I posted on Lindsey's facebook page (almost) every day in September. I would like to share those posts here.
September 3rd:
Today's picture was when Lindsey was less than 3
months old. I have always loved this picture. You have no choice but to smile
when you see this picture. Lindsey was always such a happy baby. I know there
are people that think, "How could you not know something was wrong."
Trust me I have thought the same thing. How could I not know that this tumor was growing inside my
baby girl trying to take over her entire little body? How could I not know? The
doctors say she was probably born with it. Parents spend every single day
trying to keep their little ones safe. We make sure they don't put any little
toys in their mouth that could cause a choking hazard, we make sure that the
outlets are covered so they don't get electrocuted, we make sure that there are
no sharp corners in the house so they don't get hurt, we make sure we don't
leave scissors laying around, we make sure that they don't get to close to hot
items, we make sure we put sunscreen on them so they don't get burned. But it
didn't matter what I did to protect her. I couldn't protect her from Cancer.
On that note, I am going to leave you with some
symptoms for Hepatoblastoma. Looking back... Lindsey did have a couple of these
symptoms. When Lindsey was around 7 weeks old she had Jaundice. Usually if they
get newborn jaundice it is right away. They did tests and never could figure
out what was causing the jaundice. They finally said it was breastfeeding
jaundice and I had to stop breastfeeding for a weekend. Her numbers came down
just under their alert level so they didn't look into it any more. I think that
was our first chance to catch it. We missed it. Another symptom that Lindsey
had was anemia. At her 1 year check up she was put on iron because her iron was
low. That was our second sign. We missed it. She was always so happy and always
had a beautiful smile on her face. I never once thought there was anything
wrong. Honestly, who would think the C word with any of these symptoms. I
certainly didn't. The doctors assured us that there was nothing we could have
done differently. The way we discovered her cancer, is the way that most of the
Hepatoblastoma cases are diagnosed, the tumor just gets large enough to
actually feel.
What are the symptoms of hepatoblastoma?
The following are the most common symptoms of
hepatoblastoma. However,
each child may experience symptoms differently.
Symptoms may vary
depending on the size of the tumor and the presence
and location of
metastases.
Symptoms may include:
a large abdominal mass,
swelling or pain in the abdomen
weight loss or decreased appetite
Nausea and vomiting
jaundice (yellowing of the eyes and skin)
fever
itching skin
anemia (pale skin and lips from decreased number of
red blood cells)
back pain from compression of the tumor
We are up 2 fans from yesterday, 391. Are you doing
what you can to help share Lindsey's story and spread awareness? Please share
with your family and friends and ask them to "like" Lindsey's page!
September 4th
Isn't she such a cutie!! Today's picture is a
picture of Lindsey when she was less than a year old. She pretty much was bald
for the first couple years of her life. I had 3 boys and when I found out I was
having a little girl and I was so darn excited. I couldn't wait to braid her
hair, and put pony tails in her hair, and dress her up! This is a picture of her at Build a
Bear with one of their little wigs. I thought it was way too cute!! She still
didn't have much hair at 15 months when she was diagnosed so she really didn't
have much hair to loose. Jeff said if she ever went completely bald he would
shave his head. Well we really don't think she ever went bald, but we look back
at some of the pictures now and she looks very bald. I would have people come
up to me and tell me not to worry because their kids were bald at that age too.
They would say don't worry, she will eventually have hair. I couldn't help but
think... God I hope so! I hope she lives through this and has beautiful long
flowing hair!! We didn't go out too much when Lindsey was sick, but when we
did, you couldn't tell that she was so sick and fighting for her life. All you
would see was this beautiful little girl with a great big smile on her face. We
should all learn something from her. She was putting on the fight of her life,
and still woke up every morning with a smile on her face.
Today's Cancer fact:
Research on the emotional impact of childhood
cancer finds that parents and siblings report even greater longterm emotional
impacts than the diagnosed child
We are at the same as yesterday, 391 fans. Are you
helping us raise awareness? Please share and ask friends and family to like
Lindsey's page and share with others. September is Childhood Cancer Awareness
Month. Lets raise awareness. Are you wearing your gold today?
We also want to wish Lindsey's Brother a very Happy
Birthday!
September 5th
Today's picture is of Lindsey and her Papa! I
don't know the date of the picture but it was quite some time ago. We went for
a little hike in the Smoky Mountains. We knew Lindsey would not be able to make
the hike up the hill. I don't think she was even walking yet. Jeff carried her.
Doesn't matter how tired he got, or how heavy she was he carried her carefully every
step of the way. Just like he carried our entire family for Lindsey's cancer
journey. He was the strongest one and always has been. He didn't just carry
Lindsey on his back, he carried me, and the boys as well. There were days when
I fell apart and he kept it all together for our family. I know it was very
hard to carry us all but he never let any of us down. He ran a marathon with us
all on his back and he came in first place! Enjoy todays picture!
Help spread awareness.. Today's Cancer fact...
What are the most common types of childhood cancer?
Among the 12 major types of childhood cancers,
leukemias (blood cell
cancers) and cancers of the brain and central
nervous system account
for more than half of the new cases. About
one-third of childhood
cancers are leukemias. The most common type of
leukemia in children is acute lymphoblastic leukemia. The most common solid
tumors are brain tumors (e.g., gliomas and medulloblastomas), with other solid
tumors (e.g., neuroblastomas, Wilms tumors, and sarcomas such as
rhabdomyosarcoma and osteosarcoma) being less common.
We are up 1 fan from yesterday. Today is day 5 of
Childhood Cancer awareness month. Are you wearing your gold? Are you helping
raise awareness? Please invite your friends and family to Lindsey's page! Thank
you for checking in!
September 6th
So today's is a picture of my sweet little
princess on her very first Halloween. "I'm a Princess, and Princesses
don't get sick." Have you ever seen that commercial? It pretty much brings
me close to tears each time I hear it. I am not even sure what the commercial
is for. I think maybe clorox wipes or hand sanitizer or something like
that. I just hear this cute little girl saying those words. Then I think about
my little princess. She is a princess, and she did get sick! Even to this day
that commercial gets me. Yes Lindsey has fought her battle and we pray that she
will never have to fight another one, but not a day goes by that I don't think about
what she went through. We tell our children all the time that we will protect
them. We tell them that we won't let anyone hurt them. Then we have to hold her
down while she screams... with this look on her face as if to say, "I
thought you would protect me?"... We just had to keep saying to ourselves
over and over that she needed these tests to live, so we would help hold her
down. All the while our hearts would be breaking for our little girl and we
would be close to tears. Once a week Jeff and I had to remove all the bandage
from her broviac and scrub her chest, then apply new bandages. Jeff had to wear
a mask and gloves and try to keep the area as sterile as we could. I had to
hold Lindsey down. Her skin was so raw from having the bandage on 24/7. It
would burn. She would scream. It had to be done. I took a video of the very
last time we had to do this to her. I have never watched the video, and don't
know if I ever will. I don't know if Lindsey would ever want to see the video.
(I am talking when she is much much older.. like in her 30's..lol) I don't
think I need to watch it. It is still very fresh in my mind. She is my little
princess.. and I've got news for you.. Princesses do get sick.
Today's Cancer Fact:
Late effects of childhood cancer treatment are
common in survivors, and approximately one-third are moderate to severe.
We are up 6 fans from yesterday!! Woohoo! Someone
is sharing her info! Thank you very much!! Please continue to invite your
friends and family to "Like" Lindsey's page and help spread
awareness. Today is day 6 of Childhood Cancer Awareness month! Are you wearing
your gold
September 7th
Today is day 7 of Childhood Cancer Awareness
Month. 4 years ago today we found out there was something wrong, we just didn't
know what. I don't think I slept at all that night. It is an awful feeling to
know something is wrong with your baby, but no one can tell you exactly what it
is. Here is what happened 4 years ago today: Lindsey and I had decided late Wednesday
night the 6th of September to go on an unplanned trip to
California. On Thursday the 7th of September I
took Lindsey in to the doctor to have them check
her ears. She was just at the end of her antibiotics
for an ear infection. Jeff thought it
would be a good idea to have them checked before
our flight to California on
Friday Morning at 6:30 am. Our Doctor
was not available, but one of the other
pediatricians’s were available to see her. What we thought was going to be a quick check of her ears and we would be on our way
to get ready for our flight (that would be leaving in less than 24 hours),
turned into the beginning of a
long journey. The doctor had been
feeling around in Lindsey’s belly for quite a
while, I was not sure what he was doing. When he was done he asked me if anyone had every told me she had an enlarged liver. He said he had never seen Lindsey before and saw no notes in her file of the doctor being able to feel her liver. I told him no one had ever Lindsey before and saw no notes in her file of the
doctor being able to feel
her liver. I told him no one had ever
said anything to me about it. He said he wanted another doctor to come in and feel too.
So the other doctor came in and confirmed he did
also feel
something. The doctor said we needed to
go to the hospital and have an ultra sound of her
liver.
On our way to the hospital, I was on the phone with
my
sister to tell her that we probably would not be on
the flight in the
morning. I told her what the doctor
said and she was immediately on the Internet
looking up info about an enlarged liver. She read all the causes and one hat caught my attention was too much iron.
Lindsey had been taking extra iron for the past 3
months because her
iron was low. So I said that must be
it! She has just had too much now, we
can take her off and everything will be fine!
Jeff meets me at Children's Hospital for Lindsey's
ultra sound. I ask the lady doing the test if she could
tell if Lindsey's liver was enlarged, she of course
told me that she could not
give me any info since she was not a doctor, she
did say that we would know
something before we left. She finished
up and left the room. She came back in
with the doctor. He said he wanted to
look a little more. So they started
looking at Lindsey's belly again. He
said, "Yeah, I see what you mean.”
My heart sank to the floor. What on earth did that
mean? He left the room. Then the lady left the room. She came back in a few
minutes later and told
us to go to the lab and get some blood work done,
then go home and our
pediatrician would call us. What
happened to us knowing something before we left?
They wanted the lab results first. I could
tell this was all not good. So we went
and had Lindsey's blood drawn and headed home.
What seemed like hours (was probably only a few
minutes) there was no
call from the doctor, so I finally called the dr. I
spoke with the pediatrician and he told me
that they found a large mass in Lindsey's abdomen
and that was all he could
tell me at this time until further tests were run.
I know he said some other
things, but I just could not remember anything.
I know she had a CT scheduled for 8 am the next
morning. I wanted them to do the CT right now. I didn't want to wait. Why do we
have to wait? So my husband called the Dr back to get a few
more questions answered. Why couldn't we
have the test done right now? It was
because Lindsey couldn't eat for 8 hours before the
test. What are they thinking the mass is? The
doctor said it did not look like a cyst because it
was solid and was not
fluid. It looked like a tumor. He did not know if
it was on her spine (which
would have been the worst) if it was in her kidney,
or in her liver. Unfortunately we would have to wait until the
morning. This was the longest night of
my life.
Today's Cancer Fact:
There are currently more than 270,000 childhood
cancer survivors in the U.S.
Wow! We are up from 398 fans to 420! Thank you!
That is awesome! Thank you for helping spread awareness! Please continue! I
know we can get more people to "like" Lindsey's page. Be sure to
click on the button under Lindsey's page that says "SUGGEST TO FRIENDS"
then send an invite to all your friends. Thank you!! Lets continue to spread
awareness. Tomorrow is September 8th. That is the day we heard the
"C" word and our baby girls name in the same sentence. 4 years ago. I
have a special video planned for tomorrow! Are you wearing your gold?
Sept 8th Radiothon 2009 [HQ]
Day 8 Of Childhood Cancer Awareness Month.
September 8th, 2010. This is also the 4th anniversary of the day we found out
that Lindsey had cancer. I wanted to share with you what I wrote on September
8th 2006. This pretty much sums up how I felt when I first heard the word
Cancer and my baby girls name in the same sentence. I was pretty much numb. Here is what I wrote,
"A few minutes later the radiologist came in to talk to
us. He said he just didn’t want us to leave and not know anything. He said that they found a 10 cm tumor (which is about 4
inches – look at a ruler- that is pretty big!) in her liver. I don’t think my heart is beating anymore. My heart fell out and is lying on the floor. I don’t have any feeling in my body. The doctor’s lips are still moving, is he still
talking? I don’t hear him. I really need to snap out of it and listen to what the doctor has to say. All I heard now was that he was going to reach the pediatrician
and find out what they wanted us to do next. He said it would probably be to make an appointment with an
oncologist. I was able to ask how soon he thought we could do that, he said they were pretty accessible.
This was a Friday afternoon, I thought for sure it would be next week before we could see an
oncologist. Shortly after that our pediatrician was on
the phone and I spoke with him. He said that they believed Lindsey had a Hepatoblastoma.
They had contacted the oncologist and he was
able to see us right now. The nurse walked us over to the oncologist’s office." I made a special little video today. I thought
everyone might like to hear a song by precious little Lindsey. This was
Radiothon 2009 for Children's Hospital. I hope you enjoy it!
Today's Cancer Fact: On average a treatment for
childhood cancer diagnosis is two years.
We are up from 420 fans to 425! Thank you! Please
continue to share Lindsey's page. I think we can hit 500 very soon! Be sure to
click on the button under Lindsey's picture that says "SUGGEST TO
FRIENDS" then send an invite to all your friends. Thank you!! Lets continue to
spread awareness. Are you wearing your gold?
Guess
I will do a picture today as well as the video. This picture was taken
September 8th 2009. I took Lindsey to meet her princess on the 3rd
anniversary of her diagnosis. We had dinner with Cinderella. She was so
excited. When she first saw Cinderella she said, "I didn't know my
princess was real!" When Cinderella
came around they asked if Lindsey was celebrating anything special and
she said, "Yes! That I don't have cancer anymore!" The manager later
came to my table and said that Cinderella told him that Lindsey was
celebrating something very special and asked if we could stick around
for a little bit so they could bring her a cake, and so Lindsey could
get a picture with Cinderella, Prince Charming, Lady Tremaine, and the 2
wicked stepsisters. It was a great day!
September 9th
Day
9 of Childhood Cancer Awareness Month. This picture is for Auntie...
This was taken when Lindsey was a month and a half old. It is a pretty
funny picture. I had a lot of cabbage patch kid dolls when I was little.
I bought Lindsey her first one, and decided to take a picture of her
in the box. Little did I know we
would be living in a box for months on end. We took every precaution
we could to keep Lindsey away from germs. When she had chemo, a common
cold could have killed her. There was a bottle of sanitizer on every
open counter space in the house. Lindsey and I would lock ourselves in
my bedroom when her numbers were low. We wouldn't even let the boys
touch her or see her when they would come home from school. They could
say hi to her through the bedroom door. We didn't accept any visitors.
We did what we had to. We were told that we needed to have a bag
packed because she would get sick and she would end up in the hospital.
We wanted to do everything we could to make sure that did not happen.
So... we lived in our little box! I am happy to say that it worked.
She never had a hospital stay other than for her chemo and her
surgeries. We lived in a box.. but we made it out of that box and
enjoying life! She is truly a gift from God. My precious baby girl!
Thanks for following her story! I am going to ask you all to do
something today. For those that knew us when Lindsey was diagnosed,
please share your thoughts about when you heard the news. My sister
just shared her story with me, and I don't think she had ever told it to
me before. So please, share with me if you can! I also what to tell everyone what Riley did
yesterday. On his own, he had spoke with his friends and asked them to wear
gold yesterday, September 8th, the anniversary of his Sisters diagnosis. He
didn't tell me he was doing this. He said he got 4 of his friends to wear gold!
That is awesome!! I love it!! Isn't that so sweet! Wish he would have told me
so I could have gone to the school and got a picture!!
Today's Cancer Fact:
The incidence for cancer is greater among white
children than for
children in all other ethnic groups. The largest
racial difference is
for leukemia, where the rate for whites is 41.6 per
million, and only
25.8 per million for blacks.
Incidence rates for Hispanic and Asian/Pacific
Islander children fall
between those for blacks and whites. Incidence for
American Indians is
much lower than any other group.
We
are up from 425 fans to 439!! Woo Hoo!! Thank you
so much! Someone is spreading the word!!! Please continue to share
Lindsey's page. I think we can hit 500 very soon!
Be sure to click on
the button under Lindsey's picture that says
"SUGGEST TO FRIENDS" then send an invite to all your friends. Thank
you!! Lets continue to spread awareness. Are you wearing your gold?
Mark your Calendars for September 27th! That is the
Chili's St Jude Day. They donate all their profits to St Jude! We will be
there, will you? How about setting up a work luncheon at Chilis? How about a
night out with family at Chili's? How about both!
September 10th
Day10
of Childhood Cancer Awareness Month.... Today's picture is another cute
one of little Miss.. I look at it and I see Lindsey telling cancer to
kiss her %^&! That's exactly what she did! She is so amazing! I
have people all the time say that they don't know how we did it. They
don't know how we made it through. They could never imagine being in our shoes and watching their little
ones go through what Lindsey went through. Believe me.. I would have
said the same thing. I would never have thought I could make it through
anything like this. I received strength every single day. There were
so many prayers (and still are) so many prayers being said for our
precious little Lindsey. Trust me.. We can sure feel them. We have such
an amazing support group! You guys are the best and you helped us each
and every step of the way!
Today's Cancer Fact:Only 3% of federal funding for cancer research is focused on childhood cancers.
We are up from 439 fans to 445!! Thank you! Please continue to share Lindsey's page. I think we can hit 500 very soon! Be sure to click on the
button under Lindsey's picture that says "SUGGEST TO FRIENDS" then send
an invite to all your friends. Thank you!! Lets continue to spread
awareness. Are you wearing your gold? Lets tell cancer to kiss our
behinds!! We need a cure!!
Mark your Calendars for September
27th! That is the Chili's St Jude Day. They donate all their profits to
St Jude! We will be there, will you? How about setting up a work
luncheon at Chilis? How about a night out with family at Chili's? How
about both!
September 11th
Day 11 of Childhood Cancer Awareness Month.
Todays picture was taken in September of 2006. We went to the zoo with some of
Lindsey's friends. It was after we found out she had cancer. We tried to
continue as normal as possible. She had so much fun at the zoo with all her
friends. I just love this picture of her. Not a care in the world. I don't think anyone told her
that she was so sick. Does this look like the picture of a little girl that has
cancer?
I wanted to post more notes from September 8th,
2006. The day we found out that Lindsey had cancer. These are the notes I put
on her website. "The oncologist was done with appointments for the day,
but said he would see us anyway. This was so wonderful of him. He
came in and spoke
with us and gave us a lot of basic information. He
said the first thing he wanted to say was that it was not our fault! He
just wanted us to
understand that we should not tell ourselves that
we should have known something was wrong, or we should have caught this
sooner, there is
nothing we could have done differently. This is
exactly the way this
sort of tumor is found, on a routine check up. He
also told us that
today is going to be very overwhelming and when we
leave the office
today we are only going to remember one thing that
he said, and that is the word "cancer". This is true, I really
do not remember much about
what else he said. He did tell us that he is pretty
sure that she has a
Hepatoblastoma. He told us that liver cancer in
adults is almost
always fatal, but that is not the case in little
ones. They have a very
good survival rate, he said it is about 75%. Of
course I want to hear
100%, but 75% is better than 50%! He did tell us
that if the cancer has
spread anywhere else in her body that her chances
of survival were not
as good. He said he would not say that no one
survives, but it is much more difficult. He said if we got home and thought
of anything
we forgot to ask, just pick up the phone and call
him, that is what he is there for. He did not want us to think that we
should not call and
bother him on the weekend, just to ask a question.
He said this is his job and we will not be bothering him. He also did
say that he
understands if we want to take her to St Jude to be
treated. He said he
knows many people want to go to St Jude because it
is well known. He said that they can do anything St Jude's can do. He
actually spent the
last 3 years at St Jude and has only been at
Children's Hospital for a
few weeks. He did say that if he thinks we can get
better treatment
anywhere else, he will be the first to admit it and
send us there.
Wow. What a day. I remember one thing about today,
"cancer."
Today's Cancer Fact: Overall progress has flat
lined over the last ten years, indicating a strong need to increase funding
research for children.
We are up from 445 fans to 453!! I love seeing
this! Thank you all so much for sharing Lindsey's page. Please continue to share
it! I think we can hit 500 very soon! Be sure to click on the
button under Lindsey's picture that says
"SUGGEST TO FRIENDS" then send
an invite to all your friends. Thank you!! Lets
continue to spread
awareness. Are you wearing your gold?
Mark your Calendars for September
27th! That is the Chili's St Jude Day. They donate
all their profits to
St Jude! We will be there, will you? How about
setting up a work
luncheon at Chilis? How about a night out with
family at Chili's? How
about both!
September 12th
Today's
picture is of Lindsey asleep in the hospital crib. Notice she has a
pair of hospital gloves on. Every time someone would come in the room
to mess with her, they would always put gloves on. Well it got to the
point, where she had to have her gloves on too. Most of the nurses came
to know that when they got their
gloves out, they had to get Lindsey a pair too! The pink blanket that
is on Lindsey in this picture is a prayer blanket we received from
church exactly 4 years ago today. Here is my entry from September 12th
2006
"The morning started off very well. we attended 9am mass. Father said a wonderful prayer for Lindsey. After mass everyone prayed over a blanket that the church had made for Lindsey. Then Father blessed the blanket with holy water. It was then presented to Lindsey. They also gave her an adorable little bear that moves and plays music. Now she will be surrounded with prayers. The blanket will be with her forever! As far as the surgeon, well not the new that we hoped for, but it is going to be ok. This leaves all the good news for tomorrow morning! For this we pray! The surgeon told us that the tumor is quite large and would be difficult to remove. The tumor is taking up most of the right
lobe of her liver. Many have asked (and a question that I had myself) if the tumor is 4 inches, how big is her liver. I asked today and was told it was about 6 inches. The surgeon did say they could take out most of the right lobe of the liver, but this comes with big complications. So the best at this time would be for Lindsey to do chemotherapy and shrink the size of the tumor, then remove it. This type of cancer as we have said is very rare. I read that it happens in one in a million. I knew Lindsey was my One in a Million, but I did not know that she was The one in a million. I asked the surgeon about this and he confirmed that it is very rare and he has only seen it 4 or 5 times every! So needless to say this was not the news we wanted to hear, but it is ok. I will wait until 8:00 tomorrow morning for the good news. Our next step (after the CT in the morning) will be surgery at 8:00 am on Friday morning. Lindsey will have a biopsy done. There is a possibility that this is not a hepatoblastoma, but the surgeon said it was a very low possibility that it is anything else. We asked if it was not a hepatoblastoma, what else to they think it could be. He said an abnormality of some sort. The surgeon said that he is going to talk with the oncologist tomorrow and most likely when they are doing the surgery on Friday they will go ahead and put a broviac in Lindsey. This is how she will receive her chemotherapy. I guess as soon as they take part of the tumor out during surgery they can take it right to the lab and find if it is malignant. That will determine if they will put the broviac in. Further testing of the tumor will determine what stage the cancer is in and what sort of treatment schedule she will be put on. That is all for now. Tomorrow is the CT scan at 8:00am. The doctor told us that if it has spread anywhere else, her chances are not as good. He said that he is not going to say that on one survives, but... not as good of a chance. I don't want to close with that so, please pray especially in the morning. All your prayers are keeping us strong. Lindsey is very happy and does not look like she is sick at all. I will close with a prayer to ST Peregrine:
O great St Peregrine, you have been called "The Mighty", "The Wonder Worker", because of the numerous miracles which you have obtained from God for those who have had recourse to you. For so many years you bore in your own flesh this cancerous disease that destroys they very fiber of our being, and had recourse to the source of all grace when the power of man could do no more. You were favored with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of the sick whom we entrust to you. (Pause here and silently recall the names of the sick for whom you are praying.) Lindsey Ann Long. Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy. Amen"
I
have been saying that prayer every single night since I first heard it.
My mom found it in one of my Grandma's old bibles. Thanks Grandma!
4
years ago tonight was another very long night. In the morning we were
going to find out news that could go in either direction. We did not
pray that they would not find cancer anywhere else in her little body.
We prayed that the cancer had not spread. We prayed that if there was
cancer anywhere else, that they would find it. Remember, gotta watch
what you pray for! Lindsey has some test coming up on September 14th!
That is just 2 short days away! Hopefully by the end of the week we
will have the results!
Today's
Cancer Fact: I am going to list some of the types of childhood cancer.
Leukemia (accounts for about 31% of childhood cancer cases)
Acute Lymphoblastic Leukemia (ALL)
Acute Myeloid Leukemia (AML)
Brain
and central nervous system (CNS) tumors (accounts for about 21% of
childhood cancer cases), including tumors of the spinal cord
Astrocytoma
Brain Stem Glioma
High-Grade Glioma
Central Nervous System
Craniopharyngioma
Desmoplastic Infantile Ganglioglioma
Ependymoma
Medulloblastoma
Atypical teratoid rhabdoid tumor
Neuroblastoma
(accounts for about 7.1% of childhood cancer cases), a tumor of immature nerve cells that often starts in the
adrenal glands, which are located on top of the kidneys and are part of
the body’s endocrine (hormonal) system
Wilms Tumor (accounts for about 5.2% of childhood cancer cases), a type of kidney tumor
Non-Hodgkin
Lymphoma (accounts for about 4.3% of childhood cancer cases) and
Hodgkin Lymphoma (3.8%), cancers that begin in the lymph system
Rhabdomyosarcoma
(3.3%), a type of tumor that begins in the striated muscle, which are
the skeletal voluntary muscles that people can control. Other, rare soft tissue sarcomas also occur.
Retinoblastoma (2.6%), an eye tumor
Osteosarcoma (2.5%) and
Ewing Family of Tumors (1.6%), tumors that begin in the bone
Germ Cell Tumors, rare tumors that begin in the testicles in boys and ovaries in girls
Pleuropulmonary Blastoma, a rare lung cancer that begins in the chest
Hepatoblastoma and hepatocellular carcinoma
We are up from 453 fans to 457!! Not too bad! Thank you so much for continuing to share Lindsey's page. Please continue to share it! I think we can
hit 500 very soon! Be sure to click on the button under Lindsey's
picture that says "SUGGEST TO FRIENDS" then send an invite to all your
friends. Thank you!! Lets continue to spread awareness. Are you
wearing your gold?
Mark your Calendars for September 27th! That
is the Chili's St Jude Day. They donate all their profits to St Jude!
We will be there, will you? How about setting up a work luncheon at
Chilis? How about a night out with family at Chili's? How about both!
September 13th
Day
13th of Childhood Cancer Awareness Month.. Today's picture is a great
big kiss from Lindsey to all of you! She thanks each and every one of
you for your prayers!
First let me say that tomorrow morning at
7am we will be on our way to the hospital. This is about the time the
nervousness kicks in. I will say that with
each negative result, it gets a little easier.. But.. until we hear
those results we are not totally free. Lindsey will have an Ultra
Sound, Chest X-ray and some blood work. Please say some extra prayers.
You should know me by now.. Don't pray that they don't find anything.
Please pray that if there is anything to be found, that they find it.
We do pray that she remains in Remission and Cancer free! We have an
early morning so I am going to post my notes from September 13th 2006.
This was the day we found out that Lindsey's cancer had not spread!
Since the day she was diagnosed on September 8th we had no idea what her
chances of survival were. Like I have said before we were told 70% if
the cancer had not spread, and not very good odds if it had spread. It
was wonderful to hear that news that it had not spread. Now we just
needed to be a part of that 70%! Thanks be to God! Here are part of my
notes from that day...
"I don't want to jump the gun here, so I will update later, but I know many people are watching for updates. Preliminary results of CT are that there are no signs of the cancer spreading. This is absolutely wonderful news, but the Oncologist said that the Radiologist will look at it in great detail to see if he can find any little signs of it spreading so we will wait for the final results. He said he did not foersee any problem at this time. Which is wonderful news! Thank you all so much for your prayers! I will update when we get a final note. Thank you again! THANKS BE TO GOD! The results show NO SIGNS of the cancer spreading. We got our good news today! Thank you GOD! God is answering our prayers! Thank you everyone for all your prayers! This is just proof of the power of prayer! I did want to share one thing before I go into information we received at today's visit. I was deeply touched by how many people are out there praying for my little girl! I thought I would share some of this information. The very first day (9/10) we had the website up, there were 286 Unique visitors and they visited the site a total of 1036 times. The next day (9/11) there were 430 Unique visitors and they visited the site 1535 times. The third day (9/12) there were 671 Unique visitors that visited the site 2261 times. We do not have the final numbers for today. This does not even count the number of people that do not have access to the interned. There are so many people praying for her. This is absolutely wonderful! We feel so blessed! Now on to more information about today. The CT
appointment was for 8:00am. No yucky stuff for Lindsey to drink, therefore no early morning wrestling match. We thought they were doing a CT of the head and chest, we were wrong, it was only of the chest. The Dr did not feel he needed one of her head. That was good news to us. The nurse had a little trouble finding a vein for the IV, so Lindsey was pretty upset by this. I sang You Are My Sunshine to her to try to calm her, I could tell it helped her. Then they gave her the sleepy juice and she was out. She growled at them a little bit again to let them know she was trying to sleep and they better just leave her alone. The waiting was a little easier today as I had brought along my rosary and just sat in the waiting room and prayed. The time seemed to go by a little faster. Before I knew it, she was back in my arms. She kept getting a hold of the nurses ID badge and looking it over. One of the nurses said she was taking names down in her mind and when she grows up and is Dr Lindsey Long and she sees this same nurse in a nursing
home... well I finished it for the nurse and told her that Lindsey will be sure to take very good care of them! The Oncologist said we could go get something to eat and then head up to his office. Well I didn't have much of an appetite so I said we would be right up. They said they would try to get the Dr in as soon as they could. Next thing we knew
he popped his head in and said he had just looked over the CT and did not see anything. He said the radiologist would review further and let him know. This was such wonderful news! I knew that if he told us that it had spread that she would be ok, that it would just be a longer, harder battle. I thank GOD that he removed this obstacle for us. Then the Doctor said he would be back in as soon as he could. It was so nice of him to come in and give us this wonderful news instead of making us wait any longer. Then about, oh I don't know, maybe about 20 minutes later he came in to speak with us. He told us that the radiologist should let him know in about 2 hour if they find anything. We asked that if we had better chances if it was really small rather than finding a large piece and he said any evidence of it spreading would be just as bad, no matter how small. He did say that her AFP (Alpha-fetoprotein) is very high, her levels are at 200,000 and the normal is less than 100. He said there was nothing surprising on the blood work, it was everything they had expected to see. He said her bone marrow is working good. He said our next step is the biopsy. He did tell us that there is still a chance that she might not need chemotherapy. He said that if the tumor's is made up entirely of fetal histology - they will want to just take the tumor out if possible, and avoid chemotherapy. He did say that since the surgeon here said he would not feel comfortable taking out this size tumor, he would probably send us for a second opinion. If we are told that the surgery is impossible with the size of tumor, then maybe they would do a couple rounds of chemo and try to shrink it, then remove it. If it is not entirely the fetal histology, then we will have to start chemo to try to shrink the tumor. There is no way to tell how long the tumor has been there, he said possible there since before her birth. He did say that Chemo can have significant problems and if we can avoid it, we will. Lindsey has had a small fever and he said it is nothing to worry about. It is probably just the body trying to fight off the tumor. He discussed putting in her Broviac, which is her central line. They will use this for chemo and can also take blood from it. He said they can put it in when they do the biopsy, that way she will not have to have another surgery to put it in. He said that since there is still a chance that she will not need chemo he will leave it up to us, if we want it put in or not. He said he would recommend it. We thought it would be a good idea, because we wouldn't want her to have to have another surgery. I also said to put it in because according to Murphy's Law if it is in, then she will not need it! The doctor said that sounded good. The next step is the biopsy on Friday. They will not be doing the
needle biopsy, they are actually going to make an incision and take out a good size chunk of the tumor. This will give them the best results. She will possibly have to stay overnight, but he is not sure. He said it will probably take a few weeks to get the results of the biopsy. There is still a small chance that it is something else, but the doctor
said based on lab results they are pretty sure it is the hepatoblastoma. We are prepared to fight this battle for Lindsey's life and we just know that she is in God's hands, and He is going to heal her! Everyone at the oncologist's office is just wonderful. They all try to get us to let them take Lindsey home with them. The social worker gave Lindsey a necklace today. It will be a necklace that tracks everything that she is going through. The Bead Program (as they call it) is designed to document and honor the journey
that Lindsey will take. The program is a chance for children to tell their story using colorful beads as meaningful symbols of the many points along the treatment path. She will add beads to her necklace for many different steps that she will be taking towards her recovery. They said this is a great visual tool for the children to see how far
they have come. Even for the little ones, when they get older they can look at this necklace and recall everything they went through to get where they are that day! So far Lindsey has 3 amethyst beads which represents tests/scans, she also has 3 red beads which represents how many times she has been poked. On Friday she will get a copper bead which represents surgery and a silver line crystal which is for her central line. The social worker gave us quite a bit of literature, and was very supportive. She asked if we had our family here with us to help in this difficult time. I told her that my mom was here and is great support. The rest of the family does not live here but we have had quite a few people reach out to us. I told her that there were about 1,000 people in that little room with us and each and everyone had their arms around us. Thank you all for being there with us today!"
Today's Childhood Cancer Fact:
(Since
we are getting Lindsey's AFP drawn tommorrow I thought I would borrow
this info from the hepatoblastoma foundation website about AFP)
AFP
is a protein that is secreted in normally high levels during fetal
development in the uterus. Maternal Serum Alpha-fetoprotein tests
(MSAFP) are often done in weeks 15 – 18 of pregnancy to rule out various
fetal abnormalities such as Down’s syndrome or anencephaly.
However, AFP is also used as a tumor marker for cancers such as testicular cancer and hepatoblastoma.
In
a normal human, the AFP level is usually under 10, in children with
liver cancers the number can be much, much higher though a high AFP
alone should not be considered a definitive diagnosis. Moreover, AFP
tests are used to measure the effectiveness of a particular cancer
therapy as well as to monitor patients who are off treatment.
We
are up 1 fan from yesterday, 457 fans to 458!! Thank you so much for
continuing to share Lindsey's page. Please continue to share it! We
are one person closer to 500 fans!! Be sure to click on the button
under Lindsey's picture that says "SUGGEST TO FRIENDS" then send an invite to all your friends. Thank you!! Lets continue to spread awareness. Are you wearing your gold?
Mark your Calendars for September 27th! That is the Chili's St Jude Day. They donate all their profits to St Jude! We will be there, will you? How about setting up a work luncheon at Chilis? How about a night out with family at Chili's? How about both?September 14th
Day
14 Childhood Cancer Awareness Month.. Today's picture is a picture I
took of Lindsey on Easter. I just love the close up of her beautiful
face! Today's update is going to have to be short and sweet! I am
exhausted. We went for Lindsey's check up today! It was great. I think
it was a lot easier when she was little
and didn't realize what was going to happen. She knew right away what
we were doing and instructed me to turn around out of the parking lot
and leave. She was reluctant but did walk into the hospital. She was
an ol' pro at the ultra sound and the chest xray. It was kinda weird
with the ultra sound. It was the same exact lady that did Lindsey's
ultra sound September 7th 2006 and found the tumor. After the xray and
ultra sound it was up to the Clinic for blood work. That's the part that
didn't go so well. I had to hold her while they drew the blood. She
has some great lungs! Other than that it was great to see everyone in
the clinic that we have come to know and love. Everyone commented on how
big Lindsey is getting and still as cute as ever! The doctor said the
Chest X ray and the ultra sound look good. Now we just wait for those
AFP test results. I will post as soon as I hear something. Thank you all
for your prayers.
Today's Childhood Cancer Fact:
80% of children have metastatic disease at time of diagnosis as compared to only 20% of
adults.
We are
up from 458 yesterday to 460 fans today! Someone is spreading the
word! Thank you so much!! Please continue to share it! We
are getting closer to 500 fans!! Be sure to click on the button
under
Lindsey's picture that says "SUGGEST TO FRIENDS" then send an invite to
all your friends. Thank you!! Lets continue to spread awareness. Are
you wearing your gold? Mark your Calendars for September 27th! That is
the Chili's St Jude Day. They donate all their profits to St Jude! We
will be there, will you? How about setting up a work luncheon at
Chilis? How about a night out with family at Chili's? How about both!September 15th
Day 15 of Childhood Cancer Awareness Month.
Todays
picture.. Well what does this picture look like to you? An adorable
little girl riding around in her little red wagon. Well That isn't
what I see. This picture almost brings me to tears when I look at.
This picture was taken 4 years ago today. September 15th 200...6.
This is the last photo I have of Lindsey before she was taken off to
surgery... This is the last photo I have of her before she was cut open
and a reminding scar is in its place. Not that the scar is a bad thing.
It definitely reminds us each and everyday of what a precious miracle
we have in our presence. Guess this picture just really represents the
last picture I have of Lindsey "pre-cancer". Even though she definitely
had cancer when this picture was taken, but she had no visable signs of
the cancer.
Here is my update from September 15th 2006 " I
know many are watching for updates so this will just be short until I
get a few more minutes to update. It was a very long day and night.
Lindsey had her biopsy and preliminary results show the tumor is
malignant. They decided to go ahead and put in her broviac, this will
be how she will receive chemo. She lost a lot of blood during surgery
and ended up in the ICU for the evening. She did have to have a
transfusion. After a long night, we are now home and she is doing a
little better. She is up and walking around a little bit, but is still
very sore. We thank everyone for their prayers. I have heard that when
a baby is sleeping and they smile in their sleep, that means they are
being kissed by an angel. Well just to let you all know that right
before Lindsey went into surgery she had fallen asleep. She was lying
in her dada's arms and she was smiling so big, she was evening laughing.
This went on for quite a few minutes. We know there were many angels
with her at that very moment. Thank you all! "
The next
couple days are probably going to be short updates. I have a busy week
planned and it is hard to write these notes and re-live these days when I
am away from Lindsey. I have only been away from her for 1 day out of
her entire 5 years... This week I will be gone for 4 nights. It is so
hard to write this and not give her a huge hug! Plus waiting for those
dreaded AFP results! We should have them tomorrow! I talked to Lindsey
on the phone today and she said "I am going to blow you a kiss and a
hug, you better catch them." She is such a precious angel!
Today's Childhood Cancer Fact:
Children
with cancer treated with chemotherapy and/or radiation therapy may be
at increased risk for developing a second primary cancer. For example,
certain types of chemotherapy, including alkylating agents or
topoisomerase II inhibitors (e.g., epipodophyllotoxins), can cause an
increased risk of leukemia.
We are up from 460 yesterday to 463
fans today! Thank you!! Please continue to share Lindsey page! We are
getting closer to 500 fans!! Be sure to click on the button under
Lindsey's picture that says "SUGGEST TO FRIENDS" then send an invite to
all your friends. Thank you!! Lets continue to spread awareness.
Are
you wearing your gold? Mark your Calendars for September 27th! That is
the Chili's St Jude Day. They donate all their profits to St Jude! We
will be there, will you? How about setting up a work luncheon at Chilis?
How about a night out with family at Chili's? How about both!
September 16th
Day
16 of Childhood Cancer awareness month. First let me get a drum
roll.... AFP test results are in and Lindsey's AFP is 1! This is
wonderful news! We get another 6 months of get out of jail free!
Thanks be to God! This is wonderful. What a big relief! Thank you so
much for all the prayers.
I am still in Utah and
we have had a busy couple days and it is going to stay like that. I am
exhausted but having so much fun! I don't have a lot of pictures of
Lindsey on this laptop so today's picture is of her in the hospital
playing in one of the little hospital buckets. Isn't she just so darn
cute!!!
Today's notes are from September 21st, 2006. This was 6
days after the biopsy. We finally got the results. Here is what I
wrote "Lindsey's biopsy results came in today. The sample of the tumor
taken during the biopsy shows purely fetal histology. Without getting
hung up on the medical terminology I'll do my best to tell you what this
means. We are now shopping around for a surgeon to remove this tumor
without treating Lindsey with the chemotherapy drugs. We are currently
looking in Cincinnati, OH (The Cancer Center at Cincinnati Children's
Hospital Medical Center) and Nashville, TN (Vanderbilt University
Hospital). If we find a surgeon that feels that they can successfully
perform the operation we will have the tumor removed and studied to make
sure that the entire tumor is purely fetal. If it is then Lindsey
should not have to receive any chemotherapy drugs and she should recover
fully. If there are other sub-types of cancer present upon further
study then other treatments may still be necessary. If we can not find a
doctor that can do the surgery then we will have to do chemotherapy to
shrink the tumor to make the surgical procedure less risky. So, pray
that we find a doctor who has been blessed with God-given talent and one
whose hands, heart and mind will be guided by Jesus Christ and that
they will remove the tumor and we can all wake up from this horrible
nightmare. Just keep in mind that this is a very risky surgical
procedure so all of your prayers are still needed. We will update you
all with more specifics as we have them. God Bless you all. "
Today's Childhood Cancer Fact:
For
every six research dollars per patient with AIDS and every one research
dollar per patient with breast cancer, a child with cancer receives
only 30 cents
We are up from 463 yesterday to 465 fans today! Thank
you all so much!!! Please continue to share Lindsey page! We are getting
closer to 500 fans!! Be sure to click on the button under Lindsey's
picture that says "SUGGEST TO FRIENDS" then send an invite to all your
friends. Thank you!! Lets continue to spread awareness.
Are you
wearing your gold? Mark your Calendars for September 27th! That is the
Chili's St Jude Day. They donate all their profits to St Jude! We will
be there, will you? How about setting up a work luncheon at Chilis? How
about a night out with family at Chili's? How about both!
September 17th
Day 17 of Childhood Cancer Awareness Month. I am going to share my notes from September 26th 2006. We had finally made a tough decision. "The follow-up appointment with the surgeon went fine. He just looked at her incision from the biopsy. It looked just fine. Then he spoke with us a little about our next step, and tried to help with our
decision any way he could. After a very hard day trying to decide if we wanted to head up to Ohio for an MRI, or to just stay here and start chemotherapy. We had made up our minds a couple times, but changed each time we spoke to a different doctor. We had asked God to guide us in this decision, whatever would be the best for Lindsey. We had an awful day and could not get a feel for one way or the other. One is we could go to Ohio and have a MRI done, this would give the doctor a better picture of the tumor and help him decide if he could do an up front resection. We know this could be risky because the size of the tumor and how vascular the tumor and the liver are. An upfront resection could prevent chemo if the tumor does turn out to be Pure Fetal Histology (PFH). But if it does not turn out to be PFH, then she would require chemo anyway. The surgeon in Ohio had said he did not think with the pictures that he has, that the surgery would be possible at this time. But he did want to do an MRI to be sure. So again our thoughts are if it is that close of a decision, do we want to risk it. We always have that hanging there that we might be able to avoid chemo. The other thing is we could just go ahead and start the chemo. So finally after a long day of going back and forth and back and forth, we got our direction at about 7pm. Before the phone rang we had basically decided that it would not hurt to at least have the MRI done. Then the surgeon from Ohio called. He spoke with us and asked if we had any questions, so we gave him an ear full. He spoke with us for about 40 minutes. He was very wonderful. He said, "Do you want my honest opinion?" and we said "YES". He said that he would do chemo first. So we believe this is the direction that we were sent. We now have chemo scheduled to start on Thursday September 28th. We will meet with the doctor at 10:30 am for him to "scare us" as he put it. They will have to go over all the possible side effects of the chemo. Today is the day that Lindsey and I would have been flying home from our trip to California."
Today's Childhood Cancer Fact: Cancer Stinks!
We are up from 465 yesterday to 467 fans today! Thank you all so much!!! Please continue to share Lindsey page! We are getting closer to 500 fans!! Be sure to click on the button under Lindsey's picture that says "SUGGEST TO FRIENDS" then send an invite to all your friends. Thank you!! Lets continue to spread awareness. Are you wearing your gold?
September 18th
Day 18 of Childhood Cancer Awareness Month.
Todays
picture is a picture of Lindsey in her purple survivor shirt at Relay
for Life. So many people could not believe that she was in purple. She
was so tiny! She took the survivor lap walk (well honestly I probably
carried her!) and enjoyed everyone that was waving and clapping for her. (and all the other survivors!) It was an awesome experience.
I
am heading home tomorrow and can't wait! When I talked to Lindsey
today she said "But I haven't given you a hug!" I can't wait to get a
big hug and kiss from my baby girl! I am having a great time but
missing the family like crazy.
This is my update from September
28th 2006. It talks about the type of Chemo Lindsey was going to be
getting, and the possible side effects from the chemo.
"First
stop this morning was to the oncologists office. We got to hear about
all the possible horrible side effects of the chemo. I guess we were
pretty prepared for most of them. The one that sticks out in my mind is
"Increased risk of developing a secondary cancer known as acute
myelogenous leukemia". Lindsey will receive 3 different drugs. One is
Cisplatin. The most common side effects from this are Nausea, vomiting,
loss of appetite, and loss of taste. This is the one that could
possibly cause the secondary cancer. It also has possible side effects
of low blood counts, hearing loss, kidney and liver damage, hair loss,
changes in heart rate, blood pressure, blurred vision, mouth sores, gait
disturbances, numbness in toes and fingers, weakness, seizures (rare),
chills, fever, rash (rare), and wheezing, difficulty breathing (rare).
The next drug is Vincristine. The most common side effects are pain and
constipation. Some other possible side effects are tissue irritation
at IV site if drug leaks out (this wont happen since she will not be
getting this through an IV she will get it through her broviac), pain in
jaw, legs, arms, hands, fingers, toes, and joints, hair loss, abdominal
pain or cramping, muscle weakness, numbness of fingers and toes,
drooping eyelids and seizures (rare). The last drug is called 5-FU.
Most common side effect is mouth sores. Other possible side effects
include Low blood count, nausea, vomiting, diarrhea, heartburn, hair
loss, skin rash, skin color changes of hands and face and partial loss
of nails, headache, minor visual changes, disturbance in coordination,
chest pain, heart damage (rare), and liver damage (transient). We had
to go over all this, then sign a consent for treatment. Right now they
are planning on doing Chemo every 3 weeks. It all depends on how well
she handles the chemo if we can keep to this schedule. They will do a
CT scan after her second course is complete to see if there has been
enough change to the size of the tumor to re-evaluate for resection. If
not, then we will continue for 2 more treatments and re-evaluate at the
end of the 4th treatment. I really pray that the first 2 treatments
will attack the tumor and cause it to shrink enough for surgery. I pray
that Lindsey does not have any terrible side effects of the chemo. I
pray for strength to get me through this, watching my little girl
receive these awful chemicals into her body. I pray that she can still
find some way to look over at me and give me one of her beautiful smiles
that help me through each and every day. "
Today's Cancer fact:
All kinds of cancer, including childhood cancer, have a common disease
process — cells grow out of control, develop abnormal sizes and shapes,
ignore their typical boundaries inside the body, destroy their neighbor
cells, and can ultimately spread (or metastasize) to other organs and
tissues. As cancer cells grow, they demand more and more of the body's
nutrition. Cancer takes a child's strength, destroys organs and bones,
and weakens the body's defenses against other illnesses
We are up
from 467 yesterday to 470 fans today! A big thank you to everyone that
is sharing Lindsey's page! Please continue!! Thank you! Thank you!
Thank you!! We are getting closer to 500 fans!! Be sure to click on
the button under Lindsey's picture that says "SUGGEST TO FRIENDS" then
send an invite to all your friends. Thank you!! Lets continue to spread
awareness. Are you wearing your gold?
September 19th
I missed day
19.... I left Utah at 8:30 am and did not arrive in Knoxville until 4:00
am the next morning. It was a very long day and a long story. I ended
up renting a car to finally make it home.. Sorry I missed yesterday...
September 20th
Childhood Cancer Awareness month day 20... Today's picture is a picture of
Lindsey in the hospital during her first round of Chemo. We had a
little scare when she started the chemo. Here is my post from October
3rd 2006. This was Lindsey's first round of chemo.
..."It is back to the drawing board. Lindsey had her first chemo drug, vincristine at about 9:45 pm. They also gave her some anti-nausea medicine called kytril. Then a little while later they started the next chemo drug called cisplatin. About an hour after that I was putting Lindsey in the crib, but decided to change her diaper first. It was dark in the room but as I was changing her, I felt something on her legs. I asked Jeff to turn on the light, as soon as he did we saw hives all over her legs. He ran to the nurse's station and they came in and stopped the chemo. They gave her some benedryl and the hives cleared up in about 30 minutes. We kept a close eye on her the rest of the night, and luckily she did not have any other problems. The doctor came in the next day and said "She isn't making this easy, is she." All we heard all day long was how they had never seen this type of reaction before. Leave it to Lindsey to not only be the 1 in the million, but now the one and only. She definitely likes to keep everyone on their toes! They did give her the 3rd chemo drug called 5-fu. That was all fine, so we got to come home. She is doing really good. She is up and playing and doing just fine. The doctor is going to discuss Lindsey's case with a few other Doctors at a conference he is going to. We will meet with him on Monday the 9th to discuss our next step. We have a couple different options. Right now we are not a 100% sure which drug caused the reaction, it could have been the anti-nausea medicine, or one of the chemo meds. She had pants on so we cannot say for sure when the hives showed up. So we could try the cisplatin again, but a second reaction could be worse than the first. If we did this she would be well monitored in the ICU. Another option is to search for a surgeon that fells comfortable removing this size tumor. There are a couple different chemo drugs that we could use instead of the Cisplatin. But they each have their own separate side effects. One could affect the heart, plus little ones don't handle it as well. So we just have to wait and see. We pray for God's guidance in the next step of Lindsey's recovery. Thank you all for your prayers."
Today's
Cancer fact: Approximately 70% of children with cancer participate in research trials compared to only 3% of adult cancer patients. As a result, many of the advances in
adult cancer treatments are due to breakthroughs in childhood cancer research.
We
are only up 1 fan in the last 2 days, from 470 to 471. Only about 10
more days in the month, I hope we can hit 500 by the end of the month. A
big thank you to everyone that is sharing Lindsey's page! Please continue!! Thank you! Thank you! Thank you!! Be sure to click on the button under Lindsey's picture that says "SUGGEST TO FRIENDS" then send an invite to all your friends. Thank you!! Lets continue to spread awareness. Are you wearing your gold? September 21st
| September 2nd, 2010
Childhood Cancer Awareness Month
|
Wow! I have been neglecting this page. In this case, no news is good news. Lindsey is doing great! She just started Kindergarten. It is so hard to believe! The day I dropped her off I started thinking back to her diagnosis. She has come a long way! She is a happy and healthy 5 year old! September is Childhood Cancer awareness month. I am sharing some old pictures and some Childhood cancer facts each day on her facebook page. I will try to post some of them here as well Please "like" her facebook fan page.
http://www.facebook.com/#!/pages/One-in-a-Million-Lindsey-Ann/248994659212?ref=ts
Here is today's Cancer Fact:
Think
about today's Cancer fact when you drop your little one off for school.
Every school day, 46 young people, or two classrooms of students, are diagnosed with cancer in this country. More than 12,500 children are diagnosed with cancer each year and over 40,000 children and adolescents currently are being treated for childhood cancers.
That means... Each
day... 2 room full of kids get diagnosed with cancer. Can you imagine
how many lives are affected each day by Cancer? Lets think about those
46 kids. Say they each have 1 sibling, that is 46 more people affected,
so we are at 92 people. Then each of those kids have parents, so that
is 92 more people, we are at 184 people now. Then most of them will
have 4 Grandparents so that is 184 more people, we are now at 368
people. I bet they have lots of Aunts and Uncles and Cousins and friends
and neighbors. I think you get the point. Do you see how many lives
are affected each and every day by cancer? I wear Gold today for my
precious baby girl! I wear Gold Today because I want to raise awareness
and find a cure!
Please invite a friend to Lindsey's page and
help spread awareness. Today we have 389 fans. Thank you everyone! We
raise awareness, because we need a CURE!
I am also going to try to reflect on a part of our journey during this month. Today's reflection is about Lindsey age at diagnosis. Lindsey was 15
months old when she was diagnosed. If I meet someone and ask how old
their children are.. you can not imagine how it feels when someone says
that their child is 15 months old. It is a very difficult age for me.
When I see their little tiny 15 month old, it brings back so many
memories. To me at 15 months old, my precious little baby was 10 feet
tall and bullet proof. She needed to be. She had quite a battle coming up. I guess now when I look at how tiny and innocent
a 15 month old actually is.. well. It definitely pulls on my heart! Please wear gold and help spread awareness. September is Childhood Cancer Awareness Month!
| September 2010
Catch Up
| I have been posting some things on Lindsey's facebook fan page, but not here. So I am going to copy what I have posted there.
February 11th 2010 Book Drive
Books
have taken over my dining room! If you said you were sending them and
they have not arrived, please let me know the status so we can either
find someone else, or know that they are on the way! We are still
waiting on Colorado, Idaho, Iowa, Louisiana, Maine, Minnesota, Missouri,
New Mexico, North Dakota and Orego...n!! Thanks everyone!! We will be delivering to the hospital tomorrow & to the RMH on Monday!
February 12th 2010
We
had an awesome day today at the hospital! Thank you everyone that
helped! Lindsey was on the 5 o'clock news! We celebrate 3 years
remission on Sunday & then serve dinner & deliver more books
& goodies to the Ronald McDonald House on Monday! If you want to
help there is still time! We are still collecting items to take to the RMH or you can send paypal to help with buying some supplies for them! Thank you everyone!March 2nd, 2010
well....
I don't know why I thought her tests were this week.. I am just glad I
realized this at 10:30 pm the night before instead of driving to the
hospital at 7:30 tomorrow morning! Looks like it is next Tuesday. I
didn't even have the day of the week right. Not sure what I was
thinking! So NEXT Tuesday the 9th is the day! Thanks everyone!!March 9th 2010
We
had a great day! Hearing test was great! Chest xray & Ultra sound =
prelim results are good. Just waiting on the major indicator and that
is the AFP test.. Should have results by Friday at the latest! Thanks
for all the prayers! After the testing I asked Lindsey what she wanted
to do, she said "Go for a walk" So ...we did. We went and walked around the zoo. Grandma and cousin CJ joined us. It was a beautiful day!March 11th 2010
AFP
test is back!! Everything is just fine!!! Woo hoo!!!! Another 6
months until we have to do it all again!! Afp is 1.3. (Normal is
anything under 10). Thanks everyone for all the prayers!March 24th, 2010
Just had to share. Lindsey woke up this morning and opened the blinds and said, "Good morning world". It was so cute!
| January 2010
Happy New Year!
| Hope everyone is doing great! We are getting ready to celebrate Lindsey's 3rd Anniversary! She said she wants her 1st birthday at Chuck E Cheese (She is talking about her anniversary - Seems like this is going to be a Annual Event at Chuck E Cheese I wonder if we will be celebrating her 25th Anniversary at Chuck E Cheese too? Lol) and her 2nd birthday (meaning her real Birthday) at the beach! I don't know where she comes up with these things! She is awesome!!
So back to her anniversary. Last year we did a sticker drive. It was a huge success, thank you to all that participated! This year we are doing a book drive. We are collecting books and we will donate them to the Hospital and to the Ronald McDonald House. Please email me if you would like to help out! I have also posted more on a facebook page about the Book Drive. http://www.facebook.com/profile.php?id=625034038&v=feed&story_fbid=158882255914#!/pages/One-in-a-Million-Lindsey-Ann/248994659212?ref=sgm . We are trying to collect from all 50 states again this year! We will be delivering the books on Friday February 12th so please have them arrive by then. If you can't send a book but still want to help we are also collecting items to take to the Ronald McDonald house on February 15th. We are taking monetary donations to buy the supplies they have asked for as well as donations of the actual supplies. They have asked for lysol spray, small trash bags, and Clorox wipes, bathroom spray (no flowery smell). Thank you everyone!! I hope you are having a great New Year!
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