Thursday, January 10, 2013
January 10, 2013
so much different from January 10, 2011. At one it is helpless and almost feels hopeless and in the other it is full of hope and light and life. I have pretty much spent the morning crying. It is so hard to remember this day and do anything but.
I can't help it. I know I need to be graceful and grateful but at this moment, I cannot. I can only think back to this time, this day, this week and feel sad. and the helplessness comes rushing back over and swallows me. It is so hard to climb out and I know I will, I know I can, it will take a while. I don't like to wallow I don't like to be sad. I like to be positive and cheerful and live fully but...sometimes, I can't.
I think today will be a day I can't. A day for take-out dinner and late bedtime for kids and early bedtime for grown-ups and lots and lots of cuddles. Ella said this morning that today was the worst day ever when I told them of the significance of today. And maybe that is the problem, it shouldn't be as significant except as an amazing day when Anna was beginning her journey toward recovery. I'm hopeful, although not exactly, expectant, that someday this is what the date will bring. I can't imagine that day though so I do imagine it will be somewhere far in the future. After Ella said today was the worst day ever, Anna and I just looked at each other and laughed. I'm pretty sure there are many many worse days that Anna has been through. Today she's happy and went to school and is in minimal pain. What more can a sassy, social six-year old ask?
As for the six year old's mother-she's not so hot today. I can't let it go. I spent an hour on the phone with a friend just chatting about nothing in particular and then promptly got off the phone and spent an hour crying in my kitchen and now I can try to type and write. ;)
I honestly don't know why I'm so sad - she's in a great place and is feeling well. I think, privately, to myself, or not, since I'm putting it here, that I'm sad for everything that wasn't - for everything that isn't. The things about being a kid that she'll never get back. And I keep going back to that day in the pediatrician's office and the week before when she told Ms. Terri that she was too tired and needed to call her mom. I just thought she was tired from staying up late and didn't want to go to preschool. And really, how bad would it be to miss a day of preschool? Not the worst thing that can happen as it turns out. ;) I think back to her not feeling well and wondering if we could have caught it sooner - and Realistically. Honestly. I know that there is nothing that could have made it better or sooner. We were incredibly fortunate to be diagnosed on the first visit at all. Most kids wait weeks or months for their leukemia to be discovered. Now, one could say that it is because she was so sick that it was diagnosed so quickly, and that is true, but we were fortuante enough to diagnose and begin her treatment in the same day. and she was sick, by the time the pediatrician saw her that day, even I knew something was wrong, this was not the normal cold or flu - not idea it was cancer but knew as I was sitting in the pediatrician's waiting room that something was more wrong thatn Sam and I originally thought.
I'm sad and I'm mad and I'm having a hard time with gratefulness today - my attitude sucks. I'm sad for Mia and Lani and Casey and Noah, I'm sad for Kathy, I miss my friend Lynn, who would have had some wonderful words of wisdom for me, or at least told me a joke to help me suck it up and make me laugh. I'm sad for all the other kids that have to suffer, I'm so sad for Anna that she will never get back this time, she'll never have a typical kindergarten experience and be able to enjoy those kid times. There IS so much more that she will be able to enjoy and that is really, truly what I need to focus on.
A few? weeks ago I watched a documentary called 'Happy' and it discussed the science of happiness, much like they discuss the science of depression. One fo the common themes about people being happy is that they chose it. People, everyday, make choices to bring them happiness. Even if they aren't aware that is why they make their choices, just changes in routine bring about an increased level of happy for everybody. For years, I've thought it was odd that Sam likes to find new ways to drive home to our various houses. New routes, new roads, shortcuts, longcuts ;), back roads, side roads, you name it. Not something I would ever choose to do, first of all, because I would get lost, but second of all, because I know how to get home - why would I change that? Well, now I know that this is a way for Sam to create happy in his own day, in his own way. Findng a new way to drive - not gonna do it for me, finding a new pair of shoes, that might work.
So, today, as hard as it may be, as much as I kind of want to just bury myself in the sadness and the melonchaly and cover myself in dark and heavy and bathe in tears and cry myslef out, I think, I am going to choose happy as my intention for the rest of the day. We will have take away dinner, not because I'm too sad to cook, but because we can have a carpet picnic and chat and enjoy one another's company and no one will have to worry about cooking or doing dishes. Today I am going to choose happy and Know Happy that my daughter is alive.
Thursday, April 19, 2012
Hard to breathe.
Hard to concentrate.
Hard to think.
Hard to relax.
Hard to just be...
Might seem silly, and obvious to say, but I am so done with cancer. I'm sure Anna is even more over it.
This week has been a particularly bad week in Cancerville. Our little community has had a rough go. On Monday a little boy found out he's relapsed after his BMT - there's nothing left they can do for him except give him time to create memories with his family. Never enough memories and never enough pictures but they are trying to decide what things they'd like to do as a family in what time he has left.
Another little girl, 10 years old, beginning her sixth month of Maintenance, has relapsed. Anna is finishing her third month of Maintenance at the end of the month. It is hard to even move through the day - totally completely filled with fear. I haven't felt this way in a long time. I hate this being terrified and the constant, daily, draining wait for the other shoe to drop. Evidently it gets better - but everyone on the other side says it takes years. Anna threw up a couple of times yesterday. The first two thoughts in my head, 1. pack a bag and get ready to head to the ER for a possible admit and stay of unknown duration, 2. relapse, relapse, relapse It is a constant train in my head - like a broken record that runs and runs and runs and usually the extra noise of living can drown it out but then bad stuff happens, you have a shitty week and the refrain can't be stopped. There's no sleeping, no eating, no thinking and practically having to remember to breathe. Breaking into tears at the slightest provocation and avoiding contact with people. Withdrawing is probably a totally awful thing for me personally but I just can't bear to be out and about and chatting. Kids are dying. Kids aren't being cured.
Mia has died. A sweet adorable, darling girl who has an amazing twin brother, aged 5, and Mia's diagnosis was High Risk Pre-B ALL. The same exact diagnosis as Anna. After remission and almost being completely finished with Maintenance she relapsed. Had a BMT and then relapsed again. This is something that I think will never allow me to relax. I am able to forget for a time, sometimes even a few minutes a day, sometimes a few times a day but right now the fear is just gripping me. I am so grateful to God that Super Mia is no longer in pain - she's healthy and whole and safe. At the same time I wish her family had more time with her. Sam's cousin said that you never realize these will be the lasts, people always focus on the firsts. She has no more firsts or lasts. Her family has to figure out how to navigate a world without her and her poor poor precious brother has to move forward without his twin. My heart is breaking for them - my entire body is full of pain, literal physical pain and my grief for Lani and Casey and sweet Noah is actually overshadowing the fear from Anna. It vacillates between the overwhelming sadness for their family and the overwhelming scariness of being in this situation with Anna. Not that I am in ANY way saying we have any comparable situation as Mia's family and their heartbreak, but that sometimes my selfishness in our situation overrrides the grief for their situation.
We will miss you darling girl, Super Mia.
Tuesday, January 24, 2012
Mia
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.
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.
********
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.
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