My Tribute to Donna, Cancer Moms, and Too Many Children Who Have Died
This post will really be out of the norm for Matthew's blog. Typically, his blog has been more of a journal to keep family and friends updated on his health, but this entry is for a cause. Before I get into it, I will update Matthew's health.
He is doing well. Maintenance is sort of like a marathon. It just goes on and on. His treatment has been so long now, I barely remember what it was like to take care of him before. I am actually afraid of what it will be like to be discharged from oncology, because I don't feel like a regular pediatrician will have enough expertise to take proper care of him.
At first, Matthew's treatment was like a sprint. It was really hard work. All the time. We were breathless and exhausted. Like the rabbit - hurrying to win the race, but too tired to reach the finish line. Now, we have slowed down to a steady jog, and worked some of our old life back in. Like the tortoise - slow and steady wins the race.
We give him chemo in the form of pills every day, with a handful of extra pills on Thursdays. In order to ensure he gets them on an empty stomach with no dairy products for 2 hours before or after, we wake him up at 11, before we go to bed. He can sit up and take up to 14 pills in his sleep. He goes in for a check up with his oncologist once a month, during which he gets an intravenous dose of a chemo called Vincristine, and for the 5 days following that, he takes high doses of steroids to maximize the effectiveness of the Vincristine. Once every 3 months, during his monthly checkup, he also gets sedated for a lumbar puncture (spinal tap) and they administer Methotrexate, another chemotherapy, into his spinal fluid, so that his brain will receive it. All of these things work like clockwork, and have been happening for almost a year, now. They will continue until September of 2014. There are side effects, but most of them are relatively minor. Sometimes, they're upsetting for a mother to watch, but when put into perspective, I can be patient and remember that there is an end date in sight. This isn't forever. So far, it doesn't seem to have caused any damage that won't eventually heal. Matthew is truly one of the lucky ones.
Now. Let's talk about Donna. Donna was a beautiful little girl who died of a brain tumor called Papillary Meningioma in 2009. Last night, I talked about her mom, who blogs under the name Mary Tyler Mom, on my Facebook page. Here's some of what I said:
In 2010, she wrote Donna's cancer story for her 120 Facebook friends. 1 post a day, spanning the month of September, and spilling into October, each chronicling a month of Donna's life from her diagnosis to her death.
In 2011, she published Donna's story on her Mary Tyler Mom blog. This is when I discovered her, trying to make sense of what was happening to my family.
In 2012, Huffington post picked up the serial, giving Donna's story a massive, national audience. Now, her Facebook page, alone, has more than 11,000 followers.
I'm honored to say that Mary Tyler Mom has asked me to participate in some writing projects with her. I won't give away the projects she's planning, but I do want to talk about tomorrow.
Tomorrow is Donna Day. Many bloggers are coming together to write their stories about how their lives have been affected by childhood cancer.
If you'd like to read Donna's Cancer Story the link is below.
Donna's Cancer Story.
I said last night that it's hard, but worth it. I wasn't kidding. It gave me hope during some of the darkest days in my life. If I could read it, knowing the whole time that Donna would die in the end, just 2 short months after my 3 year old child was diagnosed with cancer, and feel uplifted, I promise you can too. It will be worth your time. Sometimes, people told me I needed to lay off the blogs, for my own good. Sometimes, people really worried about me. But it was like lancing a wound. There is truth here.
This story tells the truth.
That is what I admire so much about Mary Tyler Mom. We don't always see eye to eye, but I admire her so much because she always tells her truth. She doesn't sugar coat it. She is so brave.
I'm going to switch gears now, and talk for a minute about my cancer mom friends. If you know me very well at all, you've probably heard me talk about them, but we keep our group pretty private. I've talked with them, and received permission to write about them. We want to share a message of hope as well.
Our group started with one mom. Her son, who was barely more than a baby, was diagnosed with cancer, and she kept hearing from people that so-and-so's neighbor's daughter had cancer, or so-and-so's nephew had cancer. She talked with a few of them, or emailed with them, and eventually they connected on Facebook. They started arranging cancer mom dinners and playdates for the kids. When your child is immune compromised and can't be around other kids, it can be so lonely! But what about other immune compromised kids? Playdates with them feel a lot safer. Their parents KNOW the rules. They live the rules.
This mom started meeting more moms, and they started meeting more moms, and I'm sure you can see where that led. Our group, The Utah Moms with Cancer Fighting Cuties, now has more than 205 members on Facebook. We meet regularly for dinner, we have playdates in the summer, and maybe the best thing is that lately, we raise money for childhood cancer research. Like Mary Tyler Mom, what started small has grown exponentially into something no one ever expected, and we are making a difference.
Our charity of choice is CureSearch, but, at least in my mind, it is a close toss-up between them and St. Baldrick's. We have a lot of moms who have and still do participate in St. Baldrick's events as well. If I ever ask you for research money, it will most likely be for one of those two.
The cancer moms have helped me in so many ways through this journey. When I'm scared, I go to them, when I'm excited, I go to them, when I'm confused, I go to them. They inspire me and uplift me, and make me feel human and normal when I often feel separate and labeled by the rest of the world. In the 21 months since Matthew's cancer diagnosis, a lot of moms have begun and finished treatment for their kids (most protocols are more like 6-8 months long). I have seen many families endure bone marrow transplant, and radiation therapy, which are both particularly brutal, and too many children have died.
Our Facebook page is a living, breathing entity. We have a collective mood and we support each other fully. When there is news of a relapse, there is silence, with the exception of that one thread, typically for several days. When a child dies, we all mourn, even if we never met the child or the mom except on Facebook. When someone is waiting for news after a scan or a test, we hold our collective breath until there is an answer. Good or bad, we deal with the news together. Normal social boundaries are not the same among us. In Utah, there are typically a lot of social dividers based on things like religion and where a person lives, among other things, but those things are left at the door in our moms' group. We transcend that. We all have something to bring to the table, and we talk freely - no holds barred.
There are blood drives and fundraisers and so many positive messages shared. But the best thing we do is our CureSearch walk. In 2011, 8 moms came together, and rallied 40 more. These moms each formed teams. These teams each walked in honor of a child who is facing or has been faced with cancer. Some teams honored multiple kids. They did this mostly on their own. CureSearch does not have a lot of overhead, which translates to very little help from them, compared with other similar charities, but also translates to almost all of the donated funds being used for the intended purpose. In this case, it's for childhood cancer research. The goal that first year was $50,000, and the Salt Lake City walk raised $72,000.
In 2012, those 8 moms and 83 teams set a goal to raise $90,000 and raised $170,000, 100% of which was donated straight to the Children's Oncology Group for research - Curesearch didn't keep any of it. That day was filled with so much joy! This year the goal is 90 teams and $190,000.
I am proud to call these women my friends. It's important to understand something here. We don't do this to improve treatment for our children. Our children already have cancer. Their treatment course has already been decided, and research isn't going to change that, unless a miracle, overnight cure is somehow found tomorrow. We all know that's not what we're aiming for. We want better treatment for the next group of kids.
Matthew shouldn't have to endure 3 years and 2 months of chemotherapy. By the time he's done, it will have been nearly half of his life. I have constant fear of relapse, secondary cancer and late effects. Even if they cure his cancer, he may suffer for the rest of his life because of what we had to put him through to accomplish that.
My friends shouldn't be watching their kids go through cognitive, speech, or developmental delays because of the chemotherapy. People should not have to sell all of their Earthly belongings and move their families to another state in search of treatment, living in a halfway house, a Ronald McDonald House, a hotel, a camp trailer or a tiny apartment with no heat.
Donna shouldn't have died. My friends shouldn't be burying their babies and trying to make sense of it.
Okay, so now what? I can wallow if I want to. Everyone would understand. Mary Tyler Mom could certainly have wallowed. But what good would that really do? It doesn't change anything. Donna died, and nothing is going to change that. Matthew has cancer, and nothing is going to change that, either. I can either wallow and become bitter, or I can act on it and use it to become better. I want to be a better person. The reason I'm writing about all of these women is that I am inspired by them all to be a better person!
We don't raise money for our kids. It's imperative that you understand that. Our kids are the reason we raise money, that much is true, but that money will not help our kids. You know who helped our kids? The people who did this after their kids got sick. The people whose kids died during a time when no one lived through childhood cancer. That's how this works. If Matthew had been born back when I was, he would have had roughly a 10% chance of survival. His doctor recently told me that's because he would only have gone through induction therapy - that's 28 days.
So, no, we aren't doing this for our kids. We are doing it for yours. Or maybe your sister's. Or your next door neighbors. Or your grandchildren. We are doing it for the 1 in 300 boys, or 1 in 333 girls who will be diagnosed with cancer before they turn 20. We hope that when it happens to them, they will have better options than our children did.
Now, the point of this entry today, the cause I mentioned at the start, was Donna Day. See, Mary Tyler Mom's version of the Curesearch walk I described above is an annual head shaving event for St. Baldrick's. I'm going to share with you some of her words about it:
The purpose of the Donna Day campaign is to raise $ for our head shaving event on Saturday, March 30 in Chicago. It is our second event. Last year's started with a goal of $20K and we raised $79K! This year we have many fewer heads to shave and have set a goal of $30K. Our oldest shavee is 89 years old and she is doing it with her daughter, a returning shavee for us. WOW!
This is a link to their team page. To donate to the team, use the GREEN donate button. Any amount helps. Seriously. Anything. If you have a dollar to spare, it helps. If you have ten, that's fantastic. As I type this, their team has reached just over 41% of their goal. Just like Matthew's 1 1/2 pills a night and 14 on Thursdays, slow and steady wins the race. This is how we will improve childhood cancer treatment for the children of the future. St. Baldrick's funds more pediatric cancer research than anyone in our country, other than the U.S. Government.
They are still happy to take on shavees, too. If you're up for it, volunteer to shave your head. I hear it's the experience of a lifetime! There's still plenty of time. You would commit to shaving your head and ask people to donate to you for it. You'd have 30 more days to raise as much money as possible for the honor.
I will close with a quote that often comes to mind when I think of the cancer moms, and the community that has rallied around Mary Tyler Mom.
"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."
~Margaret Mead
Perhaps a combination of some small groups of thoughtful committed citizens like ours will fund the brilliant ideas that will cure DIPG, Papillary Meningioma, Leukemia, Osteosarcoma, Wilm's Tumor, Neuroblastoma, and the rest of the childhood cancers, so that our children can look back on this day and age and think of childhood cancer in the same way that I think of Polio - as something awful that used to happen to kids.
At first, Matthew's treatment was like a sprint. It was really hard work. All the time. We were breathless and exhausted. Like the rabbit - hurrying to win the race, but too tired to reach the finish line. Now, we have slowed down to a steady jog, and worked some of our old life back in. Like the tortoise - slow and steady wins the race.
We give him chemo in the form of pills every day, with a handful of extra pills on Thursdays. In order to ensure he gets them on an empty stomach with no dairy products for 2 hours before or after, we wake him up at 11, before we go to bed. He can sit up and take up to 14 pills in his sleep. He goes in for a check up with his oncologist once a month, during which he gets an intravenous dose of a chemo called Vincristine, and for the 5 days following that, he takes high doses of steroids to maximize the effectiveness of the Vincristine. Once every 3 months, during his monthly checkup, he also gets sedated for a lumbar puncture (spinal tap) and they administer Methotrexate, another chemotherapy, into his spinal fluid, so that his brain will receive it. All of these things work like clockwork, and have been happening for almost a year, now. They will continue until September of 2014. There are side effects, but most of them are relatively minor. Sometimes, they're upsetting for a mother to watch, but when put into perspective, I can be patient and remember that there is an end date in sight. This isn't forever. So far, it doesn't seem to have caused any damage that won't eventually heal. Matthew is truly one of the lucky ones.
Now. Let's talk about Donna. Donna was a beautiful little girl who died of a brain tumor called Papillary Meningioma in 2009. Last night, I talked about her mom, who blogs under the name Mary Tyler Mom, on my Facebook page. Here's some of what I said:
In 2010, she wrote Donna's cancer story for her 120 Facebook friends. 1 post a day, spanning the month of September, and spilling into October, each chronicling a month of Donna's life from her diagnosis to her death.
In 2011, she published Donna's story on her Mary Tyler Mom blog. This is when I discovered her, trying to make sense of what was happening to my family.
In 2012, Huffington post picked up the serial, giving Donna's story a massive, national audience. Now, her Facebook page, alone, has more than 11,000 followers.
I'm honored to say that Mary Tyler Mom has asked me to participate in some writing projects with her. I won't give away the projects she's planning, but I do want to talk about tomorrow.
Tomorrow is Donna Day. Many bloggers are coming together to write their stories about how their lives have been affected by childhood cancer.
If you'd like to read Donna's Cancer Story the link is below.
Donna's Cancer Story.
I said last night that it's hard, but worth it. I wasn't kidding. It gave me hope during some of the darkest days in my life. If I could read it, knowing the whole time that Donna would die in the end, just 2 short months after my 3 year old child was diagnosed with cancer, and feel uplifted, I promise you can too. It will be worth your time. Sometimes, people told me I needed to lay off the blogs, for my own good. Sometimes, people really worried about me. But it was like lancing a wound. There is truth here.
This story tells the truth.
That is what I admire so much about Mary Tyler Mom. We don't always see eye to eye, but I admire her so much because she always tells her truth. She doesn't sugar coat it. She is so brave.
I'm going to switch gears now, and talk for a minute about my cancer mom friends. If you know me very well at all, you've probably heard me talk about them, but we keep our group pretty private. I've talked with them, and received permission to write about them. We want to share a message of hope as well.
Our group started with one mom. Her son, who was barely more than a baby, was diagnosed with cancer, and she kept hearing from people that so-and-so's neighbor's daughter had cancer, or so-and-so's nephew had cancer. She talked with a few of them, or emailed with them, and eventually they connected on Facebook. They started arranging cancer mom dinners and playdates for the kids. When your child is immune compromised and can't be around other kids, it can be so lonely! But what about other immune compromised kids? Playdates with them feel a lot safer. Their parents KNOW the rules. They live the rules.
This mom started meeting more moms, and they started meeting more moms, and I'm sure you can see where that led. Our group, The Utah Moms with Cancer Fighting Cuties, now has more than 205 members on Facebook. We meet regularly for dinner, we have playdates in the summer, and maybe the best thing is that lately, we raise money for childhood cancer research. Like Mary Tyler Mom, what started small has grown exponentially into something no one ever expected, and we are making a difference.
Our charity of choice is CureSearch, but, at least in my mind, it is a close toss-up between them and St. Baldrick's. We have a lot of moms who have and still do participate in St. Baldrick's events as well. If I ever ask you for research money, it will most likely be for one of those two.
The cancer moms have helped me in so many ways through this journey. When I'm scared, I go to them, when I'm excited, I go to them, when I'm confused, I go to them. They inspire me and uplift me, and make me feel human and normal when I often feel separate and labeled by the rest of the world. In the 21 months since Matthew's cancer diagnosis, a lot of moms have begun and finished treatment for their kids (most protocols are more like 6-8 months long). I have seen many families endure bone marrow transplant, and radiation therapy, which are both particularly brutal, and too many children have died.
Our Facebook page is a living, breathing entity. We have a collective mood and we support each other fully. When there is news of a relapse, there is silence, with the exception of that one thread, typically for several days. When a child dies, we all mourn, even if we never met the child or the mom except on Facebook. When someone is waiting for news after a scan or a test, we hold our collective breath until there is an answer. Good or bad, we deal with the news together. Normal social boundaries are not the same among us. In Utah, there are typically a lot of social dividers based on things like religion and where a person lives, among other things, but those things are left at the door in our moms' group. We transcend that. We all have something to bring to the table, and we talk freely - no holds barred.
There are blood drives and fundraisers and so many positive messages shared. But the best thing we do is our CureSearch walk. In 2011, 8 moms came together, and rallied 40 more. These moms each formed teams. These teams each walked in honor of a child who is facing or has been faced with cancer. Some teams honored multiple kids. They did this mostly on their own. CureSearch does not have a lot of overhead, which translates to very little help from them, compared with other similar charities, but also translates to almost all of the donated funds being used for the intended purpose. In this case, it's for childhood cancer research. The goal that first year was $50,000, and the Salt Lake City walk raised $72,000.
In 2012, those 8 moms and 83 teams set a goal to raise $90,000 and raised $170,000, 100% of which was donated straight to the Children's Oncology Group for research - Curesearch didn't keep any of it. That day was filled with so much joy! This year the goal is 90 teams and $190,000.
I am proud to call these women my friends. It's important to understand something here. We don't do this to improve treatment for our children. Our children already have cancer. Their treatment course has already been decided, and research isn't going to change that, unless a miracle, overnight cure is somehow found tomorrow. We all know that's not what we're aiming for. We want better treatment for the next group of kids.
Matthew shouldn't have to endure 3 years and 2 months of chemotherapy. By the time he's done, it will have been nearly half of his life. I have constant fear of relapse, secondary cancer and late effects. Even if they cure his cancer, he may suffer for the rest of his life because of what we had to put him through to accomplish that.
My friends shouldn't be watching their kids go through cognitive, speech, or developmental delays because of the chemotherapy. People should not have to sell all of their Earthly belongings and move their families to another state in search of treatment, living in a halfway house, a Ronald McDonald House, a hotel, a camp trailer or a tiny apartment with no heat.
Donna shouldn't have died. My friends shouldn't be burying their babies and trying to make sense of it.
Okay, so now what? I can wallow if I want to. Everyone would understand. Mary Tyler Mom could certainly have wallowed. But what good would that really do? It doesn't change anything. Donna died, and nothing is going to change that. Matthew has cancer, and nothing is going to change that, either. I can either wallow and become bitter, or I can act on it and use it to become better. I want to be a better person. The reason I'm writing about all of these women is that I am inspired by them all to be a better person!
We don't raise money for our kids. It's imperative that you understand that. Our kids are the reason we raise money, that much is true, but that money will not help our kids. You know who helped our kids? The people who did this after their kids got sick. The people whose kids died during a time when no one lived through childhood cancer. That's how this works. If Matthew had been born back when I was, he would have had roughly a 10% chance of survival. His doctor recently told me that's because he would only have gone through induction therapy - that's 28 days.
So, no, we aren't doing this for our kids. We are doing it for yours. Or maybe your sister's. Or your next door neighbors. Or your grandchildren. We are doing it for the 1 in 300 boys, or 1 in 333 girls who will be diagnosed with cancer before they turn 20. We hope that when it happens to them, they will have better options than our children did.
Now, the point of this entry today, the cause I mentioned at the start, was Donna Day. See, Mary Tyler Mom's version of the Curesearch walk I described above is an annual head shaving event for St. Baldrick's. I'm going to share with you some of her words about it:
The purpose of the Donna Day campaign is to raise $ for our head shaving event on Saturday, March 30 in Chicago. It is our second event. Last year's started with a goal of $20K and we raised $79K! This year we have many fewer heads to shave and have set a goal of $30K. Our oldest shavee is 89 years old and she is doing it with her daughter, a returning shavee for us. WOW!
This is a link to their team page. To donate to the team, use the GREEN donate button. Any amount helps. Seriously. Anything. If you have a dollar to spare, it helps. If you have ten, that's fantastic. As I type this, their team has reached just over 41% of their goal. Just like Matthew's 1 1/2 pills a night and 14 on Thursdays, slow and steady wins the race. This is how we will improve childhood cancer treatment for the children of the future. St. Baldrick's funds more pediatric cancer research than anyone in our country, other than the U.S. Government.
They are still happy to take on shavees, too. If you're up for it, volunteer to shave your head. I hear it's the experience of a lifetime! There's still plenty of time. You would commit to shaving your head and ask people to donate to you for it. You'd have 30 more days to raise as much money as possible for the honor.
I will close with a quote that often comes to mind when I think of the cancer moms, and the community that has rallied around Mary Tyler Mom.
"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."
~Margaret Mead
Perhaps a combination of some small groups of thoughtful committed citizens like ours will fund the brilliant ideas that will cure DIPG, Papillary Meningioma, Leukemia, Osteosarcoma, Wilm's Tumor, Neuroblastoma, and the rest of the childhood cancers, so that our children can look back on this day and age and think of childhood cancer in the same way that I think of Polio - as something awful that used to happen to kids.
