LINK HERE
♥
Monday, September 29, 2008
Just a brief post tonight. I wanted to share this with you. It's a highlight on Childhood Cancer Awareness month recently on the Boston Globe website. The pictures are unbelievable. I'm sad to say that I even recognize some of these kids...little Julian is in picture #14. You can leave a message there also, if you are so moved to do so. We are making some inroads for recognition of our cause...
LINK HERE
♥Kim
LINK HERE
♥
Saturday, September 27, 2008
Here is Hannah's latest creation that she would like to share with all of you. This video was her idea this summer, she just wanted to make a "corn video." She wants everyone to go to her youtube account to view it (I think they count the number of views, so she wants to see how many people view it and like it...you can leave a comment on youtube also.)
Just click on the link below. She is pretty excited about it, so enjoy!
Hannah's Corn Video
♥Kim
Just click on the link below. She is pretty excited about it, so enjoy!
Hannah's Corn Video
♥
Friday, September 26, 2008
Thanks for checking in with us today. It's been another up and down week for us. Hannah had chorus on Wednesday morning and I dropped her, her friend, and Colby off in the morning. I started to pull away and looked back to see her crying and running for the car. This was 7:45am. I went back into the school with her, helped her back into the chorus room, and walked out and waited. It took about 10 seconds for her to come running out crying. So, for the next hour we sat around and talked about chorus, why she didn't want to go in, and what the problem was. Hmm...
Today Hannah had a GREAT day, not a tear shed, and even hit a homerun in gym. She told me everyone was cheering her on. Now that warms my heart. Before I share something else with you, here is a picture of Hannah tonight, I just thought she looked so cute in her outfit, with Dad's slippers on.
So, one other thing to share tonight. It's a letter from a fellow cancer mom. Actually, she was diagnosed with breast cancer, and four days later, her son was diagnosed with an inoperable brain tumor....diffuse intrinsic pontine glioma (DIPG). Less than 10% of DIPG children will live longer than 18 months from diagnosis. Survival is even more rare. I have followed their site for quite some time now, they are a wonderful and amazing family. Here is her letter:
September 26, 2008
Have you seen a gold ribbon? Do you know what it stands for? Have you heard that September is Childhood Cancer Awareness Month?
I am the mother of a child living with brain cancer, a diffuse intrinsic pontine glioma. I finished breast cancer treatment on July 10th and flew from Michigan to West Virginia that day for the funeral of another child...a beautiful fourteen year old girl who lost her battle with the same rare brain cancer.
Everywhere I look I see pink ribbons, I feel gratefulness...and I feel anguish. According to an article published in the New York Times on September 22, 2008, as a result of advances in treatment “...98 percent of women with early-stage [breast] cancers survive at least five years….” Why is this true? Because we have banded together to raise awareness and funding for our mothers, our sisters, our aunts, and our daughters. Our children who are living with—and dying from—cancer desperately need that same attention...and funding.
Helen Jonsen, Forbes.com senior editor and mother of a child who recently underwent treatment for osteosarcoma, stated in a September 12th article, “Cancer is the No. 1 disease killer of children in the U.S. ...We tend to talk about it in hushed tones instead of screaming for help. But scream we should.” The article goes on to say, “The funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million. By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year.”
September 13th was our nation's first Childhood Cancer Awareness Day. When I didn't see anything about it in the news—but I did hear about National Talk Like a Pirate Day a couple days later, I made some calls to our local news stations. For some reason I can't get the words of one of the story editors out of my mind. “So...what's your event?” Later…”Pitch me a story.”
Let's see...ummmm...would the deaths of 2,300 children each year be newsworthy? What about the diagnosis of 46 children each and every school day? What about the fact that only 2/3 of children diagnosed with cancer will survive? We could move on to funding. Is it newsworthy that for every dollar spent on a patient with prostate cancer, less than 20 cents is spent on a child with cancer...or that a patient with breast cancer has triple the research resource allocated to her when compared to a child?
When I mentioned that Child Cancer Awareness Day--and month--are a national thing, I was told, 'We put local news first.' Okay...I can handle that. A local event...I have a list of them.
The shock of a family receiving a breast cancer diagnosis on an October Monday afternoon, and taking their six-year-old to the Emergency Room on Thursday only to be told, “There is a large area of swelling in the brainstem; we suspect a mass.” We could always throw in the comic relief of the words, “My mom has a mass!” coming out of the mouth on that happy little face.
How about a mother leaving the Pediatric Intensive Care Unit late that night to go home because she knows she needs to get a good night's sleep before attending an Interdisciplinary Clinic early the next morning...where her own treatment plan will be recommended?
How about a local pastor, husband, and father being given the specifics of his son's grim diagnosis and prognosis in one hospital while waiting for news of the specifics of his wife's diagnosis and prognosis from the Cancer Center at another hospital?
How about an 11-year-old boy and an 8-year-old girl being abruptly pulled out of the routine world of reading, writing, arithmetic, language, history and science as taught to them by Mom at home...and being thrown into a class on brain anatomy and abnormalities (specifically their little brother's) taught appropriately and compassionately by an MSU med school professor...who also happens to be their brother's new oncologist?
How about a six-year-old who finds himself no longer able to play the piano, the violin, or the cello because he has lost the strength on the left side of his body?
How about a mother waking up in her child's hospital room one morning, showering, and walking downstairs for her lumpectomy...while her husband takes over the duties of hospital parent and waits anxiously in his son's room for news of his wife's surgery?
Looking for a human interest story? Try the same mother moving back into the hospital early on a Sunday morning four days later so that her husband, a pastor, can be in church...only to watch in disbelief as her fun-loving, active six-year-old--determined not to have an accident--becomes too weak to sit up to go to the bathroom on a bedside commode. What about the willingness of that little boy to allow the nurses to help him even with the most private of things...because he knows his mother is recovering from surgery and he is concerned for her well-being?
Not sensational enough? Let's fastforward to Saturday, November 24th, 2007...two days after Thanksgiving. A mother sits in a hospital room with her sleeping son. She ends a phone call because she hears an alarm she has never heard before, an alarm letting the nurses know that her son's oxygen level is dropping. Soon the room is full, and it is determined that the child is disoriented, then staring ahead...completely unresponsive. Somehow everyone moves with the child on that bed through the hallways to the Pediatric Intensive Care Unit where the intensivist begins the work of saving a precious life. Aside, the question parents never want to hear, though one that must be asked, “Given his prognosis—do you want us to resuscitate him, if necessary?” The father, who has just arrived, breaks down in the unbelievable stress of the moment. The mother realizes the urgency of the situation, pushes emotions aside, and asks, 'Do we know what is happening?' The answer is no. 'Then, yes, we want you to do everything you can for him.' She stands at the foot of the bed with one of her son's oncologists. Together, they watch the PICU team work...with purpose...like a machine. The mother steps outside the room only when the child is intubated. The drama continues, as the entire department revolves around that one room...that one little boy.... The eyes of those outside the room...every nurse, every resident, every doctor...are looking in the same direction. The parents sign permissions as they are handed to them, and the work goes on. Everything seems to be happening in slow motion. Finally, the intensivist approaches. The child is critical, but stable...on life support....
I have just highlighted the first month of our new life in the pediatric cancer world. I am aware of four precious children who died this week—within 48 hours—as a result of just one type of rare cancerous brain tumor, the same as my son’s. Skyler...Adam...Mara...and Brynne. They belonged to all of us. What will it take for people outside of the childhood cancer community to notice what is happening to our children? What will it take for everyone to understand the urgency of the situation? What will it take for the federal, state and local governments to finally engage in the fight? Will it be the cancer diagnosis of a celebrity’s child or the child of a political leader? Will it be the death of child belonging to someone in the media? Will it be your child?
Please, join the effort to raise childhood cancer awareness. Show your support by wearing a gold ribbon, and by making the issue an important topic of conversation. Distribute copies of this letter in your place of employment, in your place of worship, and in your community. Contact government officials, and express your concern.
A decade ago, we noticed a person wearing a pink ribbon on a t-shirt or lapel. It didn't take long for pink ribbons to raise breast cancer awareness in the public eye, and to mobilize our society to action. I hope that in 10 years gold ribbons will be as common as pink ribbons...and that the survival rates for pediatric cancers will be comparable to those for breast cancer. With your help, it will happen...one gold ribbon at a time.
With Hope for Our Children,
Sandy Smith
Breast Cancer Survivor & Mother of a Child who is Battling Brain Cancer
http://www.caringbridge.org/visit/aws
♥Kim
Today Hannah had a GREAT day, not a tear shed, and even hit a homerun in gym. She told me everyone was cheering her on. Now that warms my heart. Before I share something else with you, here is a picture of Hannah tonight, I just thought she looked so cute in her outfit, with Dad's slippers on.
So, one other thing to share tonight. It's a letter from a fellow cancer mom. Actually, she was diagnosed with breast cancer, and four days later, her son was diagnosed with an inoperable brain tumor....diffuse intrinsic pontine glioma (DIPG). Less than 10% of DIPG children will live longer than 18 months from diagnosis. Survival is even more rare. I have followed their site for quite some time now, they are a wonderful and amazing family. Here is her letter:
September 26, 2008
Have you seen a gold ribbon? Do you know what it stands for? Have you heard that September is Childhood Cancer Awareness Month?
I am the mother of a child living with brain cancer, a diffuse intrinsic pontine glioma. I finished breast cancer treatment on July 10th and flew from Michigan to West Virginia that day for the funeral of another child...a beautiful fourteen year old girl who lost her battle with the same rare brain cancer.
Everywhere I look I see pink ribbons, I feel gratefulness...and I feel anguish. According to an article published in the New York Times on September 22, 2008, as a result of advances in treatment “...98 percent of women with early-stage [breast] cancers survive at least five years….” Why is this true? Because we have banded together to raise awareness and funding for our mothers, our sisters, our aunts, and our daughters. Our children who are living with—and dying from—cancer desperately need that same attention...and funding.
Helen Jonsen, Forbes.com senior editor and mother of a child who recently underwent treatment for osteosarcoma, stated in a September 12th article, “Cancer is the No. 1 disease killer of children in the U.S. ...We tend to talk about it in hushed tones instead of screaming for help. But scream we should.” The article goes on to say, “The funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million. By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year.”
September 13th was our nation's first Childhood Cancer Awareness Day. When I didn't see anything about it in the news—but I did hear about National Talk Like a Pirate Day a couple days later, I made some calls to our local news stations. For some reason I can't get the words of one of the story editors out of my mind. “So...what's your event?” Later…”Pitch me a story.”
Let's see...ummmm...would the deaths of 2,300 children each year be newsworthy? What about the diagnosis of 46 children each and every school day? What about the fact that only 2/3 of children diagnosed with cancer will survive? We could move on to funding. Is it newsworthy that for every dollar spent on a patient with prostate cancer, less than 20 cents is spent on a child with cancer...or that a patient with breast cancer has triple the research resource allocated to her when compared to a child?
When I mentioned that Child Cancer Awareness Day--and month--are a national thing, I was told, 'We put local news first.' Okay...I can handle that. A local event...I have a list of them.
The shock of a family receiving a breast cancer diagnosis on an October Monday afternoon, and taking their six-year-old to the Emergency Room on Thursday only to be told, “There is a large area of swelling in the brainstem; we suspect a mass.” We could always throw in the comic relief of the words, “My mom has a mass!” coming out of the mouth on that happy little face.
How about a mother leaving the Pediatric Intensive Care Unit late that night to go home because she knows she needs to get a good night's sleep before attending an Interdisciplinary Clinic early the next morning...where her own treatment plan will be recommended?
How about a local pastor, husband, and father being given the specifics of his son's grim diagnosis and prognosis in one hospital while waiting for news of the specifics of his wife's diagnosis and prognosis from the Cancer Center at another hospital?
How about an 11-year-old boy and an 8-year-old girl being abruptly pulled out of the routine world of reading, writing, arithmetic, language, history and science as taught to them by Mom at home...and being thrown into a class on brain anatomy and abnormalities (specifically their little brother's) taught appropriately and compassionately by an MSU med school professor...who also happens to be their brother's new oncologist?
How about a six-year-old who finds himself no longer able to play the piano, the violin, or the cello because he has lost the strength on the left side of his body?
How about a mother waking up in her child's hospital room one morning, showering, and walking downstairs for her lumpectomy...while her husband takes over the duties of hospital parent and waits anxiously in his son's room for news of his wife's surgery?
Looking for a human interest story? Try the same mother moving back into the hospital early on a Sunday morning four days later so that her husband, a pastor, can be in church...only to watch in disbelief as her fun-loving, active six-year-old--determined not to have an accident--becomes too weak to sit up to go to the bathroom on a bedside commode. What about the willingness of that little boy to allow the nurses to help him even with the most private of things...because he knows his mother is recovering from surgery and he is concerned for her well-being?
Not sensational enough? Let's fastforward to Saturday, November 24th, 2007...two days after Thanksgiving. A mother sits in a hospital room with her sleeping son. She ends a phone call because she hears an alarm she has never heard before, an alarm letting the nurses know that her son's oxygen level is dropping. Soon the room is full, and it is determined that the child is disoriented, then staring ahead...completely unresponsive. Somehow everyone moves with the child on that bed through the hallways to the Pediatric Intensive Care Unit where the intensivist begins the work of saving a precious life. Aside, the question parents never want to hear, though one that must be asked, “Given his prognosis—do you want us to resuscitate him, if necessary?” The father, who has just arrived, breaks down in the unbelievable stress of the moment. The mother realizes the urgency of the situation, pushes emotions aside, and asks, 'Do we know what is happening?' The answer is no. 'Then, yes, we want you to do everything you can for him.' She stands at the foot of the bed with one of her son's oncologists. Together, they watch the PICU team work...with purpose...like a machine. The mother steps outside the room only when the child is intubated. The drama continues, as the entire department revolves around that one room...that one little boy.... The eyes of those outside the room...every nurse, every resident, every doctor...are looking in the same direction. The parents sign permissions as they are handed to them, and the work goes on. Everything seems to be happening in slow motion. Finally, the intensivist approaches. The child is critical, but stable...on life support....
I have just highlighted the first month of our new life in the pediatric cancer world. I am aware of four precious children who died this week—within 48 hours—as a result of just one type of rare cancerous brain tumor, the same as my son’s. Skyler...Adam...Mara...and Brynne. They belonged to all of us. What will it take for people outside of the childhood cancer community to notice what is happening to our children? What will it take for everyone to understand the urgency of the situation? What will it take for the federal, state and local governments to finally engage in the fight? Will it be the cancer diagnosis of a celebrity’s child or the child of a political leader? Will it be the death of child belonging to someone in the media? Will it be your child?
Please, join the effort to raise childhood cancer awareness. Show your support by wearing a gold ribbon, and by making the issue an important topic of conversation. Distribute copies of this letter in your place of employment, in your place of worship, and in your community. Contact government officials, and express your concern.
A decade ago, we noticed a person wearing a pink ribbon on a t-shirt or lapel. It didn't take long for pink ribbons to raise breast cancer awareness in the public eye, and to mobilize our society to action. I hope that in 10 years gold ribbons will be as common as pink ribbons...and that the survival rates for pediatric cancers will be comparable to those for breast cancer. With your help, it will happen...one gold ribbon at a time.
With Hope for Our Children,
Sandy Smith
Breast Cancer Survivor & Mother of a Child who is Battling Brain Cancer
http://www.caringbridge.org/visit/aws
♥
Monday, September 22, 2008
The rest of our weekend was good, the weather here was beautiful. Hannah did have a headache during horseback riding on Saturday, but she says it was because the helmet was hot on her head. By the end of the weekend, all of her symptoms had cleared up and she was feeling better. Now, she either has allergies or a cold. It is the height of hay fever season right now, and I can attest that it is bad.
No problem today getting out for school. She did wake up saying she didn't want to go to school, and it was a slow start to the day, but she had no issues getting out of the car, hopped right out with her friend. Still a bit tentative (crying) at math time her teacher told me today.
Now for those of you who would like to do something for Childhood Cancer Awareness Month and like to eat...these two may be for you. Unfortunately, we have neither of these restaurants within a 60 mile radius (so I can't use that as an excuse to eat some good food)!!
WORLD'S LARGEST ICE CREAM SOCIAL!!
Click here for Cold Stone Creamery
No problem today getting out for school. She did wake up saying she didn't want to go to school, and it was a slow start to the day, but she had no issues getting out of the car, hopped right out with her friend. Still a bit tentative (crying) at math time her teacher told me today.
Now for those of you who would like to do something for Childhood Cancer Awareness Month and like to eat...these two may be for you. Unfortunately, we have neither of these restaurants within a 60 mile radius (so I can't use that as an excuse to eat some good food)!!
WORLD'S LARGEST ICE CREAM SOCIAL!!
Click here for Cold Stone Creamery
Celebrate the 7th Annual World's Largest Ice Cream Social and Support the Make-A-Wish Foundation® with Cold Stone Creamery
Throughout the month of September, Cold Stone Creamery will be selling Make-A-Wish wall stars to benefit the Make-A-Wish Foundation, an organization that grants wishes to children with life-threatening medical conditions. Be sure to visit your local Cold Stone Creamery to try two new flavors, Nutter Butter® and Marshmallow, and the very special “Make-A-Wish Creations” inspired by Jack and Emily, two Wish Children.
HELP ST. JUDE BY CREATING A PEPPER AT CHILI'S TO FIGHT CHILDHOOD CANCER!!!!
Click here to check it all out on the St. Jude's Website
St. Jude Children’s Research Hospital and Chili’s Grill & Bar® announced the kick-off of their fifth annual Create-A-Pepper to Fight Childhood Cancer campaign. Now through September 30, Chili’s restaurants around the country and, for the first time, in Puerto Rico, are marking National Childhood Cancer Awareness Month by inviting people to get creative and raise funds to help St. Jude find cures and save children with cancer and other catastrophic childhood diseases.
Guests at participating Chili’s restaurants can contribute to St. Jude in multiple ways:
Here are a few photos from Tod's visit to Hannah's classroom last week. He also visited Colby's classroom...he made the rounds. Remember when he was so tiny?
♥Kim
- Jack's Creation - Marshmallow ice cream with OREO® Cookies, Chocolate Chips and Fudge
- Emily's Creation - Nutter Butter® ice cream with White Chocolate Chips, Kit Kat® and Yellow Cake
To cap off this special month, don't miss the 7th Annual World’s Largest Ice Cream Social at participating Cold Stone Creamery locations nationwide, a special night to join together and share the simple pleasures of life with a FREE ice cream and family fun. On September 25th from 5:00 - 8:00PM, guests will be treated to a 3 oz. serving of Jack or Emily's Creation. All donations will benefit the Make-A-Wish Foundation.
And another good one:
HELP ST. JUDE BY CREATING A PEPPER AT CHILI'S TO FIGHT CHILDHOOD CANCER!!!!
Click here to check it all out on the St. Jude's Website
St. Jude Children’s Research Hospital and Chili’s Grill & Bar® announced the kick-off of their fifth annual Create-A-Pepper to Fight Childhood Cancer campaign. Now through September 30, Chili’s restaurants around the country and, for the first time, in Puerto Rico, are marking National Childhood Cancer Awareness Month by inviting people to get creative and raise funds to help St. Jude find cures and save children with cancer and other catastrophic childhood diseases.
Guests at participating Chili’s restaurants can contribute to St. Jude in multiple ways:
- Make a donation to St. Jude and receive a Create-A-Pepper chili pepper coloring sheet designed for display at restaurants during the month.
- Purchase Create-A-Pepper T-shirts that can be customized with permanent marker.
- Buy a customized Create-A-Pepper key that can be cut for use at home or the office.
- Eat at Chili’s on Monday, Sept. 29, when Chili’s will donate 100 percent of profits from participating restaurant sales to St. Jude.
- Visit www.createapepper.com and to make an online donation.
Here are a few photos from Tod's visit to Hannah's classroom last week. He also visited Colby's classroom...he made the rounds. Remember when he was so tiny?
♥
Friday, September 19, 2008
Heaven has another sweet angel. Little Cole died this morning, the cancer had taken over his body. He was 3 years old.
Hannah decided this morning to try to go to school. She was still feeling some stomach pain, and headache. When we got to school, she refused to get out of the car. After I pulled over, I talked to her a bit, trying to rationalize with her and find out her reasons for not wanting to go. She said she just didn't want to leave mommy. What a tug at your heartstrings. I finally left her there with Mrs. W., her aide, but she was screaming and crying for me. I pulled around to the back of the school, and watched her finally go in with them. Someone did tell me as I was leaving that Hannah had agreed to go into the school psychologists office to talk with her. It didn't take her that long to finally make it to her classroom after that. She did go to the nurse's office late in the day with a headache, but made it until the end of the day. They came up with a strategy to try and get her to come into school and stay in the classroom, we'll see how that goes next week. It's just hard. Hard for her and hard for me.She went to bed tonight still complaining of a headache. Maybe it was from watching the Sound of Music...a long movie, but a good one.
My doc called today with my results, no central lyme. No trace of lyme disease in my spinal fluid. You would think that is good, but I think it's BAD. Now this means I don't know what it is. I asked about a false negative, but was told most likely not. I'm hoping the neurologist can shed some light, as the symptoms have been more frequent and more intense lately.
Goodnight....
♥
Thursday, September 18, 2008
Well I think it's a bug. Hannah stayed home from school today, initially complaining of a sore throat and a stomach ache. She wavered all day between a headache and a stomach ache. She didn't eat very much, only some rice during the day and a bit more rice with butter tonight. I put her to bed complaining of a bad stomach ache. We'll see what tonight brings.
♥Kim
Colby lost a tooth tonight that won't stop bleeding. There is a flap of skin that is hanging down, and it just keeps bleeding . It has slowed, hopefully stopped now that she's in bed. Never seen anything like it. She is hoping the tooth fairy brings her something really cool for this-although last month she didn't believe in that fairy. Again, we'll see what tonight brings and if the tooth fairy shows up.
Dave-he is in Houston now, visiting his brother Michael and his family. They fared ok after the hurricane, although all around them is destruction. It's nice for him to get away and visit for the weekend.
Me-I'm here still awaiting my results from the LP on Monday. Monday, Tuesday and Wednesday I was horizontal on the couch for the entire day unless I absolutely had to be somewhere (like clinic or school or basketball practice, etc. ha ha) Today a bit more "up time" but as I wait for my results, my symptoms get a bit worse. Hopefully will be a better day for all.
I'll leave you with a few telling photos. Hannah is very aware of the fact that her memory is not very good. She has taken to writing notes. Notes about EVERYTHING. She watches tv and takes notes. She watches videos in the car and takes notes. She remembers things as she is in bed and gets up to write it down. Notes Notes Notes Everywhere. Here are a couple pictures of her notes-two notes she has on the television-"October 14 at 8pm, New Spongebob" and "September 26, Suite Life on Deck" and another note with "Get the movie Fred Clause" and then a count of the songs in the movie Happy Feet that we were watching on the way home from clinic yesterday, and a count on the nicknames from Mumble, the character in the movie. It's her way to remember, notes!
♥
Wednesday, September 17, 2008
Hannah and I made the trek into the hospital yesterday for her monthly checkup. It just seems like such a long way now that we are not making it every day or every week. So this time we did not head up to our usual clinic area, we went into the Brain Tumor clinic. It was so strange. We didn't know anyone-kids or staff. We were happy to see Rob (finger stick man) there waiting for us, he knew we were coming and wanted to stop in to say hi. It was nice to see a friendly face. Not all of the kids there are brain tumor kids...not all of them their are even cancer kids, I'm not sure yet whom they see exactly, it's more than just the Brain Tumor clinic.
We saw Hannah's oncologist first, who was very pleased with her overall status. He thinks her hand eye coordination is a bit better (of course he hasn't seen her in a while), and her gait remains about the same. After he left, we got up to go, but were told to wait for the neurologist to stop by. I guess at Brain Tumor clinic you see all the doctors you need to at one time (oncologist, neurologist, endocrinologist, psychologist, etc.) which is a nice idea. However, Hannah's endocrinologist is at Stony Brook Hospital, and we don't really care for the psychologist at Schneiders, so we are still trying to find one out by us.
So, then the neurology fellow came in to assess Hannah. She left to go get the attending neurologist, who came in and did the same exam that the fellow and the oncologist did (almost). It seems a bit redundant to me (and to Hannah), but we went with the program. Everyone seemed to think she was doing very well. She is still on the anti-nausea med in the morning, otherwise she will vomit (more on that fun fact later.) And there are the cognitive and emotional issues to deal with. And the bone density issues, and growth and hormone issues. Oh well.
We also saw Alyssa, the doctor's PA, who we see more often than the doctor. We really like her, so it was nice to see her too. Alyssa is sensitive to the fact that Hannah is actually in the room when speaking to me. It seemed like the other doctors acted like she wasn't there half the time, and asked me a few pointed questions about her cognition.
This morning I woke Hannah early for her very first chorus practice before school. She seemed fine, sat down to eat breakfast when I hear her coming quickly up the stairs...she had to throw up. I just hate that, not only for her, but because it's so reminiscent of the "old days" when she used to throw up nearly every morning. She was fine after that and ate some crackers on the way to school. I got a call early afternoon that Hannah was in the nurse's office with a headache. Now I really have deja 'vu. This is exactly what happened before she was diagnosed. I rationalize that it can't be, since she just had an MRI only a few weeks ago, but it's scary nonetheless.
A few more pictures to share, here is Hannah on Sunday, trying to get a Chickadee to eat out of her hand. We had just filled the bird feeders though, and I told her it wasn't the best time to try to get them to come to her instead. She last a while, no success though, take a look at the pictures.
♥Kim
We saw Hannah's oncologist first, who was very pleased with her overall status. He thinks her hand eye coordination is a bit better (of course he hasn't seen her in a while), and her gait remains about the same. After he left, we got up to go, but were told to wait for the neurologist to stop by. I guess at Brain Tumor clinic you see all the doctors you need to at one time (oncologist, neurologist, endocrinologist, psychologist, etc.) which is a nice idea. However, Hannah's endocrinologist is at Stony Brook Hospital, and we don't really care for the psychologist at Schneiders, so we are still trying to find one out by us.
So, then the neurology fellow came in to assess Hannah. She left to go get the attending neurologist, who came in and did the same exam that the fellow and the oncologist did (almost). It seems a bit redundant to me (and to Hannah), but we went with the program. Everyone seemed to think she was doing very well. She is still on the anti-nausea med in the morning, otherwise she will vomit (more on that fun fact later.) And there are the cognitive and emotional issues to deal with. And the bone density issues, and growth and hormone issues. Oh well.
We also saw Alyssa, the doctor's PA, who we see more often than the doctor. We really like her, so it was nice to see her too. Alyssa is sensitive to the fact that Hannah is actually in the room when speaking to me. It seemed like the other doctors acted like she wasn't there half the time, and asked me a few pointed questions about her cognition.
This morning I woke Hannah early for her very first chorus practice before school. She seemed fine, sat down to eat breakfast when I hear her coming quickly up the stairs...she had to throw up. I just hate that, not only for her, but because it's so reminiscent of the "old days" when she used to throw up nearly every morning. She was fine after that and ate some crackers on the way to school. I got a call early afternoon that Hannah was in the nurse's office with a headache. Now I really have deja 'vu. This is exactly what happened before she was diagnosed. I rationalize that it can't be, since she just had an MRI only a few weeks ago, but it's scary nonetheless.
A few more pictures to share, here is Hannah on Sunday, trying to get a Chickadee to eat out of her hand. We had just filled the bird feeders though, and I told her it wasn't the best time to try to get them to come to her instead. She last a while, no success though, take a look at the pictures.
Hannah in the garden
Look at me waiting for birds
Starting to get a bit tired here
Let's just try this fake Chickadee instead
This isn't working
How about we switch hands
Doing my own bird calls
I think I'm DONE!!
♥
Sunday, September 14, 2008
September 13th, 2008 passed without much ado for Childhood Cancer. I agree with Peggy and Mimi and Kim (not me)...where is the outcry? Where is the awareness? Where are all the "pink ribbons"-you know, just a figure of speech. I was thinking about this while I was weeding the weed patch, I mean garden, today. I think that the breast cancer team has done one heck of a job getting the word out about breast cancer. You can't fault them for that, maybe what we can do is learn from them. We are starting quite a few years after, reaching out, trying to get more funding for the kids. It's not just my child, it could be yours too. Little by little, persistence pays off (and like Peggy says, I don't I'll stop shopping at Target!)
But, September is Childhood Cancer Awareness MONTH...not just one day, but the whole month. So, let's keeping going. Hannah and I are planning our next bake sale, just trying to keep the word out there and still try to help the kids that may not be as lucky as we are right now. Did I say lucky? I guess I did.
I wanted to share some pictures with you from today. This afternoon, Dave took the girls to the driving range...(Grandma and Grandpa- Hannah says she wants to be ready for you. She asked me today why we never play golf at your house, and I told here we will be there at Christmas, with snow on the ground.) More pictures to share tomorrow, I have some great shots of Hannah in the weed patch, I mean garden. I can't seem to make it to the end of this post, I'm off to bed. Lumbar Puncture tomorrow, so hopefully a diagnosis on this pesty thing soon.
♥Kim
But, September is Childhood Cancer Awareness MONTH...not just one day, but the whole month. So, let's keeping going. Hannah and I are planning our next bake sale, just trying to keep the word out there and still try to help the kids that may not be as lucky as we are right now. Did I say lucky? I guess I did.
I wanted to share some pictures with you from today. This afternoon, Dave took the girls to the driving range...(Grandma and Grandpa- Hannah says she wants to be ready for you. She asked me today why we never play golf at your house, and I told here we will be there at Christmas, with snow on the ground.) More pictures to share tomorrow, I have some great shots of Hannah in the weed patch, I mean garden. I can't seem to make it to the end of this post, I'm off to bed. Lumbar Puncture tomorrow, so hopefully a diagnosis on this pesty thing soon.
♥
Saturday, September 13, 2008
First Annual Childhood Cancer Awareness Day
Here we are in our Childhood Cancer Awareness shirts made by Heidi, Jessica's mom. Aren't they great? We wore them to dinner tonight, and many people glanced our way. Look at Hannah, to look at her quickly you wouldn't know, would you? If only it were that easy.
What did you do today? Mow the grass, swim, exercise, eat? Did you have a chance to take a moment to talk to someone about childhood cancer, or call a family of a child with pediatric cancer just to say hi, or volunteer or work to help someone with childhood cancer? More on this tomorrow...ways we can ALL get involved.
Facts About Pediatric Cancer
- Childhood cancers are the #1 disease killer of children - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
- On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient.
- In the U.S., about 46 children are diagnosed with cancer every single school day. That's about the equivalent of two entire classrooms.
- On the average, 12,500 children in the U.S. are diagnosed with cancer each year. About one in 300 boys and one in 333 girls will develop cancer before the age of 20.
- One out of every five children diagnosed with cancer dies.
- Each year 3,400 new cases of brain tumors are diagnosed, which is 3.2 out of 100,000 children.
- Every day nine children in the U.S. are diagnosed with a brain tumor.
- Brain tumors are the leading cause of cancer death from childhood cancer, accounting for 24 percent of cancer-related deaths in 1997 among persons up to 19.
- 76 percent of children diagnosed with a brain tumor are younger than 15.
- There are more than 120 different types of brain tumors, making effective treatment very complicated.
- Pediatric brain tumors are different from those in adults and are often treated differently.
- The combined five-year survival rates for childhood brain tumors has increased slowly, from 54 percent to approximately 60 percent. However, for some pediatric brain tumors (e.g., brain stem gliomas, atypical teritoid/rhabdoid and glioblastoma multiforme), long-term survival rates remain below 20 percent.
- Because brain tumors are located at the control center for thought, emotion and movement, their effects on a child’s physical and cognitive abilities can be devastating.
- Quality of life for survivors of pediatric brain tumors is influenced by the long-term side effects of treatments such as chemotherapy and radiation.
- Some brain tumor survivors require physical, cognitive and rehabilitation services to allow them to return to tasks of everyday life.
- Unlike other benign tumors, benign brain tumors may recur and may result in death.
- Brain tumors are treated by surgery, radiation therapy and chemotherapy, used either individually or in combination.
- Enhancing the quality of life of children with brain tumors requires access to quality specialty care and ready availability of follow-up care and rehabilitative services.
- Improving the outlook for children with brain tumors requires research into the causes of and better treatments for brain tumors.
Thanks for stopping by!!
♥
Thursday, September 11, 2008
How could we not be thinking of those that died 7 years ago in the terrorist attack. We did pause today to pay tribute to those who died, and their families.
♥Kim
If you missed the Stand Up 2 Cancer event on tv last week, here is a video clip where the actors read words from cancer victims and their families. I don't know Drew the 2 year old with cancer, but I do "know" Mimi Avery, sweet Julian's mom HERE
September is National Childhood Awareness Month...and this Saturday, Sept. 13th is National Childhood Awareness Day (the first ever.) Let's Stand Up 2 Childhood Cancer.
I'll close with pictures of Hannah from tonight. She found an old hat downstairs tonight, and immediately put it on even though I was chasing her down to get it off-I think it's for a 2 year old. She said she wanted to wear it because it's comfortable! Dave and I noticed that Hannah was a big hat wearer before she was diagnosed. She had this one little knit cap she used to wear to bed every night. We talked after diagnosis about the hats, wondering if they somehow made her head feel better. That was my thought tonight when she put it on, and wanted to wear it to bed. Here she is making a bracelet for her friend Colleen, and then getting in bed for the night.
♥
Tuesday, September 9, 2008
Remember September is Childhood Cancer Awareness Month...and this Saturday, September 13 is the first annual National Childhood Cancer Awareness Day! Show your support, wear a gold ribbon, wear a gold shirt, or even recycle some cans for Cans for Cancer to help kids with cancer and their families!!
Not a whole lot of news to report here. Dave and I met with Hannah's teacher today to discuss Hannah's 504 plan, and her emotional and cognitive issues. Mrs. Finger is wonderful. She is kind and calm and intelligent. I think she is a good fit for Hannah this year. We talked about homework and workload and other issues. We will just take it as it comes. The school has been very accommodating for Hannah, so I'm sure if something needs to be adjusted it will be. Today was the third day of school for the girls. Hannah became upset and ran out again today during a tough part of math, they are still working on it with her.
Make-A-Wish called yesterday with tickets for us to the Mets game tonight. Isn't that nice? I wasn't feeling well, so Dave took the girls. Hannah was very excited, but Colby wished it was the Yankees. The neurologist on Saturday would not agree to start IV antibiotics for my lyme disease. He wants a spinal tap to rule out anything else, even though I'm already positive for Lyme, and the MRI showed changes indicative of lyme (although it could be another type of infectious or inflammatory disease.) My primary care doctor started me on a new oral medicine, in hopes that it might work while I'm waiting for the spinal, which can't be scheduled until the end of the month. We'll see.
I'll end with a picture of Hannah at the Hampton Classic. That is a new hat she bought that day, it's a silk hat that was originally $99 (yes, it's the Hamptons) and was on sale for $49, the sales lady sold it to Hannah for $29. She loved it, and it does look cute on her. It's pretty difficult now to notice that Hannah had no hair at one point. If her hair is wet, you can tell because she has those two bald spots on the back of her head, but her other hair is long enough to cover it now. She still loves hats though, guess it became habit for her.
Here's a little boy who needs your prayers, he is very very sick right now. Please include him in your thoughts and prayers CHECK ON COLE. The pictures on his blog show all he is going through right now.
♥
Friday, September 5, 2008
So did you see it? I watched Stand Up 2 Cancer here with the girls, they were very interested in the whole thing. I was watching Hannah as she watched the show, especially on the pediatric segment. At the very beginning with the group of cancer survivors, she said "do those little kids have cancer? Look how little they are!"
Well what a show. I held it together until they showed the people crying..the one lady saying "you just watch someone go through it and you want to make it all ok, but you can't." That was my breaking point. So, by the time they showed King Julian (remember our friend little Julian carepage:Juliansworld) and read his mom Mimi's words about she having her hand on his chest feeling his heartbeat, then not feeling it as he died...I was done...blubbering. Did you see Julian's picture? The little boy in the red shirt while actor Forest Whitaker was reading his mom's words. Wow.
Colby and Hannah both called to make a donation. They really wanted to talk to Ellen Degeneres on the phone, ha ha. Colby donated in honor of Hannah, and Hannah donated in honor of Alec. I told her she didn't have to mention anyone, but wanted to mention her friend Alec. Amy-wish I had a picture from your visit last week to post here!!! You can check out his website HERE. Some great new pictures Amy!
I wavered between thinking the show was one big Hollywood cream puff and thinking this could really do some good. Either way, it brings awareness to cancer research and the need for funding, and that can only be GOOD. Their phone lines are open for a week, can't wait to hear what the totals are.
School Day #2 today, what a difference. Hannah jumped out of the car with Colby, and they walked into the school by themselves, with me still in the car. It was great. I didn't find out until later that Hannah actually walked in singing "gotta go to Mo's, gotta go to Modell's," with a little "hip action" as she calls it. I guess this was a bribe from dad last night, walk in singing, with hip action and she'll get $20 and lottery ticket. Colby got in on the action too with $10 for helping out. Trying to distract her, guess it worked...my question is...why didn't I get in on the action? Hannah did run out of her classroom today crying, during math. They are working on that, she just gets frustrated.
Good night, thanks for checking in with us tonight...
♥Kim
Well what a show. I held it together until they showed the people crying..the one lady saying "you just watch someone go through it and you want to make it all ok, but you can't." That was my breaking point. So, by the time they showed King Julian (remember our friend little Julian carepage:Juliansworld) and read his mom Mimi's words about she having her hand on his chest feeling his heartbeat, then not feeling it as he died...I was done...blubbering. Did you see Julian's picture? The little boy in the red shirt while actor Forest Whitaker was reading his mom's words. Wow.
Colby and Hannah both called to make a donation. They really wanted to talk to Ellen Degeneres on the phone, ha ha. Colby donated in honor of Hannah, and Hannah donated in honor of Alec. I told her she didn't have to mention anyone, but wanted to mention her friend Alec. Amy-wish I had a picture from your visit last week to post here!!! You can check out his website HERE. Some great new pictures Amy!
I wavered between thinking the show was one big Hollywood cream puff and thinking this could really do some good. Either way, it brings awareness to cancer research and the need for funding, and that can only be GOOD. Their phone lines are open for a week, can't wait to hear what the totals are.
School Day #2 today, what a difference. Hannah jumped out of the car with Colby, and they walked into the school by themselves, with me still in the car. It was great. I didn't find out until later that Hannah actually walked in singing "gotta go to Mo's, gotta go to Modell's," with a little "hip action" as she calls it. I guess this was a bribe from dad last night, walk in singing, with hip action and she'll get $20 and lottery ticket. Colby got in on the action too with $10 for helping out. Trying to distract her, guess it worked...my question is...why didn't I get in on the action? Hannah did run out of her classroom today crying, during math. They are working on that, she just gets frustrated.
Good night, thanks for checking in with us tonight...
♥
Thursday, September 4, 2008
Our first day back to school today, hard to believe. Each year I take a video of the girls before school and after school on their first day. An interview of sorts, it's always interesting to look back at the years prior and compare them. Today as I was looking back at last year's video. Hannah had no hair and she almost appeared green in the video. Her eyes looked tired and worn, but her spirit was still there. What a difference for this year. She looked happy and healthy, perky and upbeat. For some reason, we skipped 2nd grade interviews, but I did look back at 1st grade. I couldn't believe it when Hannah was sitting there after school with a cold rag on her head, talking about how her head hurt in the cafeteria because it was "too loud" and she had to go to the nurse on the first day of school. FIRST GRADE!! She wasn't diagnosed until midway through 2nd grade. I hate that. Unfortunately, my video camera won't connect to the computer, so I can't download it here, but I plan to put it on disc soon so that I can share it. But, here are a few pictures of the girls from this morning. I can't believe Colby is now in 6th grade. It's the last year for her in the elementary school. I keep calling her "the big cheese", which she just seems to love (ha ha).
Although Hannah was happy and perky this morning, it all broke down when we got to school. I walked her in, and we met Mrs. W (her aide and good friend) in the lobby. I went to leave and Hannah became upset. I talked to her a bit, and then some other adults became involved in trying to get her to head down to her classroom. She was being torn from me, at first crying, then screaming and reaching out "mommy, mommy." I was taken into the nurse's office, shaken too. I should have just taken Hannah aside and talked with her for a few moments. Hannah will do what she knows she has to, but not by being forced. You can't liken her to a new kindergartner on their first day. It's different for her, it will always be different, and it will have to be handled differently. Everyone kept telling me how she would be fine after I was out of sight, but she wasn't. She wouldn't go into her classroom for a while, and even after she finally did, she remained upset and withdrawn for quite a while. By lunchtime, Mrs. W reported that she had finally turned the corner and warmed up. The rest of the day went well.
Colby had even made Hannah a deal this morning over breakfast. If Hannah didn't cry this morning she would get two dollars-out of Mom's wallet (that's Colby the dealmaker for you, don't know how I became involved!!) She would also get another dollar (out of mom's wallet again) for a whole day without crying. Guess it just wasn't in the cards for Hannah this time. I talked to Hannah about it tonight and she said she was just scared and didn't want me to leave. I get that-it was the first day of school, but beyond that, the first day of something new for her. This is how she is, this is the way I expect it to be for her for a very long time. I'm ok with that, even if others aren't. I guess if she still cries for me on her first day of a new job, maybe I'll be prying her off of me myself :) I expect tomorrow to be much better. Keeping my fingers crossed.
So, what are you all doing tomorrow night at 8pm (ET)?? We'll be watching Stand Up 2 Cancer. There will be a piece on Childhood Cancer, and some of our dear cancer friends will be in the audience-Mimi (Julian's mom) and Michelle (Bailey's mom), along with Pearce and her family (actually up on the podium.) Hope you can watch with us. A lot has been said on many children's web pages recently about raising awareness for Childhood Cancer, about how most people don't know or don't care about childhood cancer. I don't think that people don't care, I think that people just don't know. What did I know about kids and cancer before this? It's ironic that only a couple months before Hannah was diagnosed, I sent my first ever donation to St. Jude's hospital. It was only a $25 donation, but a start I thought. I never thought it would be OUR start. You know how those commercials always tout "it could be your child." How true that is. It's not that I didn't care before, it's that it wasn't part of my world. It needs to be a bigger part of this world, of everyone's world. Our children are our future, they need to be around...happy and healthy and cancer free!
♥Kim
Although Hannah was happy and perky this morning, it all broke down when we got to school. I walked her in, and we met Mrs. W (her aide and good friend) in the lobby. I went to leave and Hannah became upset. I talked to her a bit, and then some other adults became involved in trying to get her to head down to her classroom. She was being torn from me, at first crying, then screaming and reaching out "mommy, mommy." I was taken into the nurse's office, shaken too. I should have just taken Hannah aside and talked with her for a few moments. Hannah will do what she knows she has to, but not by being forced. You can't liken her to a new kindergartner on their first day. It's different for her, it will always be different, and it will have to be handled differently. Everyone kept telling me how she would be fine after I was out of sight, but she wasn't. She wouldn't go into her classroom for a while, and even after she finally did, she remained upset and withdrawn for quite a while. By lunchtime, Mrs. W reported that she had finally turned the corner and warmed up. The rest of the day went well.
Colby had even made Hannah a deal this morning over breakfast. If Hannah didn't cry this morning she would get two dollars-out of Mom's wallet (that's Colby the dealmaker for you, don't know how I became involved!!) She would also get another dollar (out of mom's wallet again) for a whole day without crying. Guess it just wasn't in the cards for Hannah this time. I talked to Hannah about it tonight and she said she was just scared and didn't want me to leave. I get that-it was the first day of school, but beyond that, the first day of something new for her. This is how she is, this is the way I expect it to be for her for a very long time. I'm ok with that, even if others aren't. I guess if she still cries for me on her first day of a new job, maybe I'll be prying her off of me myself :) I expect tomorrow to be much better. Keeping my fingers crossed.
So, what are you all doing tomorrow night at 8pm (ET)?? We'll be watching Stand Up 2 Cancer. There will be a piece on Childhood Cancer, and some of our dear cancer friends will be in the audience-Mimi (Julian's mom) and Michelle (Bailey's mom), along with Pearce and her family (actually up on the podium.) Hope you can watch with us. A lot has been said on many children's web pages recently about raising awareness for Childhood Cancer, about how most people don't know or don't care about childhood cancer. I don't think that people don't care, I think that people just don't know. What did I know about kids and cancer before this? It's ironic that only a couple months before Hannah was diagnosed, I sent my first ever donation to St. Jude's hospital. It was only a $25 donation, but a start I thought. I never thought it would be OUR start. You know how those commercials always tout "it could be your child." How true that is. It's not that I didn't care before, it's that it wasn't part of my world. It needs to be a bigger part of this world, of everyone's world. Our children are our future, they need to be around...happy and healthy and cancer free!
♥
Wednesday, September 3, 2008
It's 9:20pm, kids have been in bed since 8:20pm, and they are still wide awake. It's going to be tough getting back into the school routine, no more 9:00am wake up time. Tomorrow is their first day of school. They both said they are nervous, Hannah says she is just going to cry, because "that's what I do."
Big changes for everyone tomorrow, kids are back to school and I'm going back to work. I will be teaching 2 gymnastics classes beginning tomorrow, 3 and 4 year olds. I was teaching when Hannah was diagnosed, then that stopped abruptly. I hope to be able to continue work with this Lyme disease. I just had brain MRI, because I was still experiencing symptoms of Lymes, even though on antibiotics for a couple of weeks. Sure enough, it seems to be in my central nervous system-brain and CFS. Oh joy. I have to go to a neurologist on Saturday to have this confirmed and be sure it's nothing else. Most likely, next week I will have a PIC line inserted and start daily IV antibiotics at home (hopefully.)
Big changes for everyone tomorrow, kids are back to school and I'm going back to work. I will be teaching 2 gymnastics classes beginning tomorrow, 3 and 4 year olds. I was teaching when Hannah was diagnosed, then that stopped abruptly. I hope to be able to continue work with this Lyme disease. I just had brain MRI, because I was still experiencing symptoms of Lymes, even though on antibiotics for a couple of weeks. Sure enough, it seems to be in my central nervous system-brain and CFS. Oh joy. I have to go to a neurologist on Saturday to have this confirmed and be sure it's nothing else. Most likely, next week I will have a PIC line inserted and start daily IV antibiotics at home (hopefully.)
Enough of that, here are a few pictures from yesterday, this isn't even our first tomato harvest. We have TONS!! Also, look at the pumpkins that Hannah grew this year. She loves to plant things in the garden.
Remember...SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH...This Friday is the big tv network Stand Up 2 Cancer event, 8pm. Here is the link, check it out: Stand up 2 Cancer
♥
Monday, September 1, 2008
Who do you know with CHILDHOOD CANCER?
Who do you know that died of CHILDHOOD CANCER?
Let me share a few with you
Beautiful Little Arden-she died yesterday in her parents arms from Neuroblastoma
And little Mariah, who died yesterday from a diffuse intrinsic pontine glioma, just barely 4 years old
And not even 2 year old Colin, who died from Leukemia
Or beautiful Jordyn who died from Anaplastic Large Cell Lymphoma
www.carepages.com/carepages/jordynlauraspagewww.caringbridge.org/visit/michaelpullano
Want me to continue? These are just a few of the kids that I know about that died only THIS MONTH!! This doesn't even count the many many others who have already earned their angel wings, or the many many others who have just learned their cancer is back, and they have to start their fight AGAIN. What amazes me is that each day I see sites of new kids that I did not know of before that have cancer. When I go to a site, and they mention another child in need of prayers for their struggle with cancer, it's continually heartbreaking.
Pearce....fighting medulloblastoma...watch her as part of Stand Up 2 Cancer.
http://cbs3.com/health/Stand.Up.To.2.782979.htm
♥Kim
Want me to continue? These are just a few of the kids that I know about that died only THIS MONTH!! This doesn't even count the many many others who have already earned their angel wings, or the many many others who have just learned their cancer is back, and they have to start their fight AGAIN. What amazes me is that each day I see sites of new kids that I did not know of before that have cancer. When I go to a site, and they mention another child in need of prayers for their struggle with cancer, it's continually heartbreaking.
Let's do something about it together.
September is National Childhood Cancer Awareness Month
Here is an idea for the day- watch the video below, mark the date on your calendar.
Stand Up 2 Cancer...this Friday, September 5th at 8pm EST
on all three major networks ABC, NBC, CBS simultaneously. It's a big one!
http://cbs3.com/health/Stand.Up.To.2.782979.htm
♥
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