Miss Mia -
For those of you that don't follow we have a friend. A little five-year old named Mia. Mia has a twin brother, Noah. Mia was diagnosed when she was 2 with the exact same diagnosis as Anna. Last winter, right before Anna was diagnosed, when Mia and Anna were both four, Mia had an early relapse. (needless to say, this story with Mia scares me, terribly.)
After her early relapse Mia needed a bone marrow transplant. Fortunately for Mia, she does have this twin brother that was able to provide her with a marrow transplant. This was a very long, difficult journey for her family - as I'm sure you can imagine.
After transplants, from what I've learned, the first 100 days are crucial. Mia was doing great after her transplant. She was weaned off her pain medication, she started eating solid foods again, played with her brother and was more back to being herself again. As Mia's family was preparing to leave the hospital and return home - Cured! - on Day 97, of 100 days, Mia was found to have relapsed with a particularly aggressive leukemia. Her parents were told they don't have a cure for her anymore.
There are many things the hospital and doctors and treatment can do and her parents have searched every avenue - Mia's best hope is to be in a clinical trial. I don't remember the exact events but she was, I believe, too healthy to be in one trial and too sick to be in another. There isn't, right now, any doctor or hospital in the country that thinks they can cure Mia. This is what her parents live with on a daily basis.
Most of this is not new news. Mia has been having quality of life chemo and her family has been out - living and having fun and doing things together. They went to Disneyland and Leavenworth and are just soaking up fun.
Last week(?) they found out she had 90% blasts in her blood. :( They changed up her medications and she was responding well to the medication, but as always, always, the side effects. Mia was hospitalized with a fever of 105.+ and they didn't know what was wrong. She's been on three antibiotics and her counts are too low so they have to hold her chemo - but if they hold her chemo her blast count goes up and if they don't hold her chemo she can't recover from the infection her body is fighting - she has no germ fighting cells left in her little body because the chemo kills them all off to fight the leukemia.
Please. Please. Please. Pray. Pray for whatever you are called - Mia, her brother, her parents, her family, her cure - whatever you pray - please pray for Mia. If you aren't the praying type - good thoughts, healing energy, positive thinking - whatever you have.
Tuesday, January 24, 2012
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Joe Paterno and Kids with Cancer
I understand that there are a lot of emotions wrapped up with everything involving Joe Paterno. I understand that people are hurt and grieving for a father or a family member - as intimates. I'm not talking about fans. I'm talking about the day to day real world impact of losing someone. That I can understand. This is related to something else I read on Sunday that I will paraphrase.
I hope that as people remember Joe Paterno they also take a few moments to remember the seven children that will die today from childhood cancer.
The seven families that are forever changed. In the three days of mourning and events in Happy Valley - Twenty-One Families will lose their child. They also need our prayers and our sadness. They've never had a chance to be amazing adults only amazing kids.
If that resonates with you:
My personal favorite:
local, dedicated to research, funds are directly to support research - not administration, not awareness or education - Research!:
http://bentownefoundation.org/home/
If you have an affinity for Penn State or Paterno:
"The Fund offsets the cost of treatment that insurance does not cover, as well as expenses that may disrupt the welfare of the child. The Fund supports the medical team that cares for the children and funds pediatric cancer research through start-up grants and the Four Diamonds Pediatric Cancer Research Institute."
http://www.thon.org/home
********
Why Research? Why not awareness and education? Funds go to families and research and not administration? WTH is she talking about?
Research funding is the best way to help out with Childhood Cancer, other than funding the daily lives of families that have had a child diagnosed. Research is where they will stop the spread of the cancers, improve the treatments, decrease side effects and cure more children. Many childhood cancers are found only in children and young adults which slows the efforts to cure the disease and find treatment.
Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).(FDF)
Cancers in adults and children often act and respond differently. For instance, pediatric cancers are frequently more aggressive and rapidly progressive than many of the more indolent adult cancers. (MCT)
Cancer treatments like surgery, radiation therapy, chemotherapy, or bone marrow transplant, kill cells that grow quickly, such as cancer cells. But in a child, healthy cells in the bone, brain, and other organs, are growing fast, too. Treatment can damage these cells and keep them from growing and developing the way they should. (ACS)
Children and adults are affected by different types of cancers. Even the cancers that are “common” to both groups are frequently different on both phenotypic and molecular levels. (MCT)
The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents). (FDF)
Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.
Childhood cancers are the #1 disease killer of children in the U.S. - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined. This is why we need research funding. It isn't just about curing the kids and young adults - it is also about curing them AND leaving them able to live productive lives as a result; lives that aren't limited and bound by lifelong side effects that the cure has brought to them.
The research needs to be different and the cures and treatment need to be different because they are different diseases - even if they have the same name. ALL in adults and kids - not the same disease and statistically has better cure rates in children. Other kinds of cancers, not so much slanted in the kids' direction.
Here is a great link that explains a tiny bit about the differences and why adult treatments don't cure kids' cancers. :(
http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/292
Several of the major cancer organizations do a great job of spreading awareness and education to the general public. Some of these organizations use a lot of children in their advertising but very, very little, minute amounts, of their funding goes into pediatric cancer research. There are a lot of reasons for lack of research on pediatric treatments but it does generally come down to funding.
I feel as if I'm already too wandering and may be too educational for most people to continue reading - there's no drama and there's nothing terribly exciting and interesting so I'll quit for today. It is 'exciting' and interesting and dramatic for me and my family - my daughter. Her life literally depends on the research that has been, and is being done into pediatric cancers. Very Helpless place to be.
Joe Paterno and Kids with Cancer
I understand that there are a lot of emotions wrapped up with everything involving Joe Paterno. I understand that people are hurt and grieving for a father or a family member - as intimates. I'm not talking about fans. I'm talking about the day to day real world impact of losing someone. That I can understand. This is related to something else I read on Sunday that I will paraphrase.
I hope that as people remember Joe Paterno they also take a few moments to remember the seven children that will die today from childhood cancer.
The seven families that are forever changed. In the three days of mourning and events in Happy Valley - Twenty-One Families will lose their child. They also need our prayers and our sadness. They've never had a chance to be amazing adults only amazing kids.
If that resonates with you:
My personal favorite:
local, dedicated to research, funds are directly to support research - not administration, not awareness or education - Research!:
http://bentownefoundation.org/home/
If you have an affinity for Penn State or Paterno:
"The Fund offsets the cost of treatment that insurance does not cover, as well as expenses that may disrupt the welfare of the child. The Fund supports the medical team that cares for the children and funds pediatric cancer research through start-up grants and the Four Diamonds Pediatric Cancer Research Institute."
http://www.thon.org/home
********
Why Research? Why not awareness and education? Funds go to families and research and not administration? WTH is she talking about?
Research funding is the best way to help out with Childhood Cancer, other than funding the daily lives of families that have had a child diagnosed. Research is where they will stop the spread of the cancers, improve the treatments, decrease side effects and cure more children. Many childhood cancers are found only in children and young adults which slows the efforts to cure the disease and find treatment.
Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).(FDF)
Cancers in adults and children often act and respond differently. For instance, pediatric cancers are frequently more aggressive and rapidly progressive than many of the more indolent adult cancers. (MCT)
Cancer treatments like surgery, radiation therapy, chemotherapy, or bone marrow transplant, kill cells that grow quickly, such as cancer cells. But in a child, healthy cells in the bone, brain, and other organs, are growing fast, too. Treatment can damage these cells and keep them from growing and developing the way they should. (ACS)
Children and adults are affected by different types of cancers. Even the cancers that are “common” to both groups are frequently different on both phenotypic and molecular levels. (MCT)
The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents). (FDF)
Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.
Childhood cancers are the #1 disease killer of children in the U.S. - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined. This is why we need research funding. It isn't just about curing the kids and young adults - it is also about curing them AND leaving them able to live productive lives as a result; lives that aren't limited and bound by lifelong side effects that the cure has brought to them.
The research needs to be different and the cures and treatment need to be different because they are different diseases - even if they have the same name. ALL in adults and kids - not the same disease and statistically has better cure rates in children. Other kinds of cancers, not so much slanted in the kids' direction.
Here is a great link that explains a tiny bit about the differences and why adult treatments don't cure kids' cancers. :(
http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/292
Several of the major cancer organizations do a great job of spreading awareness and education to the general public. Some of these organizations use a lot of children in their advertising but very, very little, minute amounts, of their funding goes into pediatric cancer research. There are a lot of reasons for lack of research on pediatric treatments but it does generally come down to funding.
I feel as if I'm already too wandering and may be too educational for most people to continue reading - there's no drama and there's nothing terribly exciting and interesting so I'll quit for today. It is 'exciting' and interesting and dramatic for me and my family - my daughter. Her life literally depends on the research that has been, and is being done into pediatric cancers. Very Helpless place to be.
Wednesday, November 16, 2011
I'm just so tired.
Tired of being cranky and sad and worried. Tired of worrying about my child dying. Tired of worrying about how to tell her that other kids die from the exact thing she has. Tired of having to live day by day by day and not being able to make plans - or to make plans with the knowledge that nothing is set - everything is tentative. I hate living in fear and I hate that I am crying every single day and I hate that I can't let go of the fear that Anna is going to relapse. I hate that in cancer - as in every.single.freaking.thing! that other Mothers do there is, even here - my kid's cancer is worse than your kid's cancer. Or that tumors somehow aren't as bad as blood cancers or that tumor cancers are so much worse or that I feel the need to hole up and not see anyone related to cancer or read about anything related to cancer because I just can't calm down. Or that relapse is constantly on my mind.
Mostly - I'm just tired. tired of bad news for other kids and tired of dealing with my kids and feeling guilty - so guilty. Guilty for what they are missing, guilty for waht they have to endure, guilty for even getting frustrated or upset with Anna. I feel like there is rarely any rationale thought anymore. Debatable about the anymore, depending on perspective I guess. ;)
I think this is enough venting for one day - do you suppose that if I cry or vent or rage enough in a two day span, in multiple venues, to multiple people, I might feel better? Just getting it all out at once? I certainly hope so!
Tired of being cranky and sad and worried. Tired of worrying about my child dying. Tired of worrying about how to tell her that other kids die from the exact thing she has. Tired of having to live day by day by day and not being able to make plans - or to make plans with the knowledge that nothing is set - everything is tentative. I hate living in fear and I hate that I am crying every single day and I hate that I can't let go of the fear that Anna is going to relapse. I hate that in cancer - as in every.single.freaking.thing! that other Mothers do there is, even here - my kid's cancer is worse than your kid's cancer. Or that tumors somehow aren't as bad as blood cancers or that tumor cancers are so much worse or that I feel the need to hole up and not see anyone related to cancer or read about anything related to cancer because I just can't calm down. Or that relapse is constantly on my mind.
Mostly - I'm just tired. tired of bad news for other kids and tired of dealing with my kids and feeling guilty - so guilty. Guilty for what they are missing, guilty for waht they have to endure, guilty for even getting frustrated or upset with Anna. I feel like there is rarely any rationale thought anymore. Debatable about the anymore, depending on perspective I guess. ;)
I think this is enough venting for one day - do you suppose that if I cry or vent or rage enough in a two day span, in multiple venues, to multiple people, I might feel better? Just getting it all out at once? I certainly hope so!
Monday, November 07, 2011
It is kind of weird that the bad stuff from this cancer stuff gets funneled over to here - this was originally a blog to keep friends and family updated with our lives and cute pictures of the girls - a fun place, maybe some craft or baking projects, scrapbooking pages, maybe.
things change and I guess, for right now, this blog is serving the purpose of being the repository of things that I deem too sad or negative for Anna's CB. I think, I couldjust delete the entries, but it doesn't seem very honest, very truthful. There is SO MUCH good, but also bad and sad. It seems disingenuous to only write the good and I don't want the reality to be lost in a sweet candy coating. Because honestly, there is really only so much sweetness that comes with cancer. So, if you're coming from the CB or just reading:
I don't like to write about the kids who have lost their fight. Every week in October seemed to bring another one or two who succumbed. Brutal to live with that reality. Hard to maintain focus and a positive outlook. Oh, and also, because I know it is inevitable that some day one of the kids Anna has met will lose their battle. Poor babies. I don't know how to have that conversation with Anna - to she and Ella, cancer is very similar to a really bad flu.they don't know what can happen to some people with cancer and I don't want them to know and be living in fear. Ella even told us a week or so ago (did I already mention this here?), "I don't get what the big deal about cancer is?" That is great. That is amazing. That is awesome. I don't want her to know the big deal about cancer. It's not fair that they have to know - any of them.
This past week, reading a Mom's updates as her son slipped away and his body quit working - after six weeks in ICU and him fading/recovering/fading/recovering - but never all the way. That was gut-wrenching. She was incredibly, brutally honest and it was horrible and all you want to do is offer her somewords of comfort but really, there is no comfort, is there? So, the really shitty part is, you kind of have to put those kids and families out of your head for a lot of the time and not think about them - because to think about them is to face up to the reality of what **could** happen. not likely, but it could happen.
It is best not to dwell in those shadows and to really, really live in today and take joy in the small things - and large things. And to be thankful for all the bountiful blessings we do have. Because, honestly, selfishly, it is hard to live and be with the parents in their sadness, grief, despair...so, it is easiest for me to just avoid thinking about them for the most part.
things change and I guess, for right now, this blog is serving the purpose of being the repository of things that I deem too sad or negative for Anna's CB. I think, I couldjust delete the entries, but it doesn't seem very honest, very truthful. There is SO MUCH good, but also bad and sad. It seems disingenuous to only write the good and I don't want the reality to be lost in a sweet candy coating. Because honestly, there is really only so much sweetness that comes with cancer. So, if you're coming from the CB or just reading:
I don't like to write about the kids who have lost their fight. Every week in October seemed to bring another one or two who succumbed. Brutal to live with that reality. Hard to maintain focus and a positive outlook. Oh, and also, because I know it is inevitable that some day one of the kids Anna has met will lose their battle. Poor babies. I don't know how to have that conversation with Anna - to she and Ella, cancer is very similar to a really bad flu.they don't know what can happen to some people with cancer and I don't want them to know and be living in fear. Ella even told us a week or so ago (did I already mention this here?), "I don't get what the big deal about cancer is?" That is great. That is amazing. That is awesome. I don't want her to know the big deal about cancer. It's not fair that they have to know - any of them.
This past week, reading a Mom's updates as her son slipped away and his body quit working - after six weeks in ICU and him fading/recovering/fading/recovering - but never all the way. That was gut-wrenching. She was incredibly, brutally honest and it was horrible and all you want to do is offer her somewords of comfort but really, there is no comfort, is there? So, the really shitty part is, you kind of have to put those kids and families out of your head for a lot of the time and not think about them - because to think about them is to face up to the reality of what **could** happen. not likely, but it could happen.
It is best not to dwell in those shadows and to really, really live in today and take joy in the small things - and large things. And to be thankful for all the bountiful blessings we do have. Because, honestly, selfishly, it is hard to live and be with the parents in their sadness, grief, despair...so, it is easiest for me to just avoid thinking about them for the most part.
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