I don't really want to write this week. Because it reminds me that Bea isn't here and that it's been almost 3 years since a brain tumor took her from me. The grief is exhausting and most times it's easier to pretend it's not there. But it is.
Bea's 10th birthday is Saturday. I wish I could be doing last minute planning for a super cool birthday party. I have no idea what she would be into now. Maybe still Hello Kitty. I mean, that cat never goes out of style. Maybe she would have outgrown her. But I'll never know.
I don't want another child to miss another birthday because there is no effective treatment for their cancer. I want a full cure and the only way to do this is to fund the amazing medical researchers who do this on our behalf. I don't have the ability to do it myself and trust this brilliant men and women who spend their lives trying to save our kids.
As usual my family is donating what we would have spent on birthday gifts for Bea to celebrate her life. The donations will go to the Pediatric Brain Tumor Foundation and CureSearch for Children's Cancer. They provide all kinds of financial and emotional support to families who have been stricken with this horrific illness. They also subsidize many, many promising studies into pediatric brain cancer. This is not one of those super huge organizations where most of your money goes to admin. This goes where it should. We will be donating $200.00.
To celebrate Bea's 10th birthday I am asking all of you reading this to donate $10.00 to the Pediatric Brain Tumor Foundation or CureSearch for Children's Cancer. And to wear pink on Saturday. I know that's symbolically a breast cancer color but it was Bea's favorite and I know Bea would be thrilled to see her friends and family wearing her beloved color.
CureSearch for Children's Cancer is an organization I found a few weeks ago. One of the medical researchers funded by CureSearch is specifically researching DIPG and has found some promising clues as to how it works. Please click this link and was the video to hear about their amazing work: http://curesearch.org/Researcher-Seeks-Answers-to-DIPG
Here are the links to donate:
The Pediatric Brain Tumor Foundation: http://www.curethekids.org/donate/#.VgQM95WFMdk
CureSearch for Children's Cancer: https://www.kintera.org/AutoGen/Single/SinglePledgeBasket.asp?ievent=1129082
Thursday, September 24, 2015
Friday, September 26, 2014
Happy Birthday Bea
Today is the toughest of the tough. It's Bea's birthday. If she were with us today she would be nine years old and in the third grade.
To celebrate her life I have donated $200.00 to the Brain Tumor Foundation for Children today. That's about the amount we would have spent on gifts for her. Now it's a gift for other children with the hope that it will help find a cure for all the kinds of brain cancer in little people.
I made a post a couple of weeks ago asking that you, my readers, also donate to this specific charity. The amount I asked for was just $9. One dollar for every year since Bea was born. So far $270.00 has been donated by you all. Add our $200 and that's $470.00. Fantastic.
I'm going to ask again though, just in case you missed my other post or forgot about it. It's just $9.00 but, boy, can that add up fast if enough of you donate.
The organization I'm sending this donation to is the Brain Tumor Foundation for Kids. They are a national charity and have a home in Atlanta. They do a lot of community support as well as fund promising research. Their web address is http://www.braintumorkids.org/donate.html
If you are on the fence about the donation let me tell you just a little bit of what a child experiences when they have a brain tumor. Their body changes suddenly. Some go blind. Some lose the ability to walk. Some can't use their arms and hands. Some are in chronic pain from headaches. Steroids make them bloated and irritable with a weakened immune system. Anti-nausea medication makes them constipated. Radiation is painful. Chemo can cause all kinds of nasty side effect. They endure all of this and if they are very young they are absolutely confused about what is happening. It is the OPPOSITE of what is supposed to happen to their bodies. And for many children with brain tumors they do not get to live out the life they were supposed to.
Please, please, please... it's just $9.00. Collectively though those dollars can add up to a substantial amount that can help end this disease. The research out there needs funding and we can't depend on governmental subsidies to pay for it all.
My family was helped by the Brain Tumor Foundation for Children. Beatrice was helped for a time by a very promising clinical trial at Pittsburg Children's Hospital, the kind that the Brain Tumor Foundation supports. I am so glad for the help when we in such dire need. Their help is life changing and life saving. So, please, lend a hand and donate $9.00: http://www.braintumorkids.org/donate.html
Thanks. And I'd like to wish everybody who shares Bea's birthday to have a beautiful day.
Lots of love,
Helen
To celebrate her life I have donated $200.00 to the Brain Tumor Foundation for Children today. That's about the amount we would have spent on gifts for her. Now it's a gift for other children with the hope that it will help find a cure for all the kinds of brain cancer in little people.
I made a post a couple of weeks ago asking that you, my readers, also donate to this specific charity. The amount I asked for was just $9. One dollar for every year since Bea was born. So far $270.00 has been donated by you all. Add our $200 and that's $470.00. Fantastic.
I'm going to ask again though, just in case you missed my other post or forgot about it. It's just $9.00 but, boy, can that add up fast if enough of you donate.
The organization I'm sending this donation to is the Brain Tumor Foundation for Kids. They are a national charity and have a home in Atlanta. They do a lot of community support as well as fund promising research. Their web address is http://www.braintumorkids.org/donate.html
If you are on the fence about the donation let me tell you just a little bit of what a child experiences when they have a brain tumor. Their body changes suddenly. Some go blind. Some lose the ability to walk. Some can't use their arms and hands. Some are in chronic pain from headaches. Steroids make them bloated and irritable with a weakened immune system. Anti-nausea medication makes them constipated. Radiation is painful. Chemo can cause all kinds of nasty side effect. They endure all of this and if they are very young they are absolutely confused about what is happening. It is the OPPOSITE of what is supposed to happen to their bodies. And for many children with brain tumors they do not get to live out the life they were supposed to.
Please, please, please... it's just $9.00. Collectively though those dollars can add up to a substantial amount that can help end this disease. The research out there needs funding and we can't depend on governmental subsidies to pay for it all.
My family was helped by the Brain Tumor Foundation for Children. Beatrice was helped for a time by a very promising clinical trial at Pittsburg Children's Hospital, the kind that the Brain Tumor Foundation supports. I am so glad for the help when we in such dire need. Their help is life changing and life saving. So, please, lend a hand and donate $9.00: http://www.braintumorkids.org/donate.html
Thanks. And I'd like to wish everybody who shares Bea's birthday to have a beautiful day.
Lots of love,
Helen
Wednesday, September 10, 2014
Celebrating Nine
Bea's birthday is this month. She would be celebrating her 9th birthday on September 26. If she were here it would likely be a girly affair with lots of pink. Maybe she would still be addicted to getting "luvies". Not diapers but her word for stuffed animals.
This year I'm going to start donating what would have been spent on birthday gifts to Bea to a worthy not-for-profit. I expect that we would probably spend somewhere around $200 so that's what it's gonna be. I know that's spoiling a bit but we're very, very lucky that we can do this.
The organization I'm sending this donation to is the Brain Tumor Foundation for Kids. They are based in Atlanta and do a lot of community support as well as fund promising research. Their web address is http://www.braintumorkids.org/donate.html
I am asking you, my readers, to please donate $9.00 to the Brain Tumor Foundation to celebrate Bea's 9th birthday. This is a really well run organization and the donation will be well spent on real services, not just administrative costs.
Next year I'll ask for $10 and I plan to do this for as long as I live.
Again... http://www.braintumorkids.org/donate.html
This year I'm going to start donating what would have been spent on birthday gifts to Bea to a worthy not-for-profit. I expect that we would probably spend somewhere around $200 so that's what it's gonna be. I know that's spoiling a bit but we're very, very lucky that we can do this.
The organization I'm sending this donation to is the Brain Tumor Foundation for Kids. They are based in Atlanta and do a lot of community support as well as fund promising research. Their web address is http://www.braintumorkids.org/donate.html
I am asking you, my readers, to please donate $9.00 to the Brain Tumor Foundation to celebrate Bea's 9th birthday. This is a really well run organization and the donation will be well spent on real services, not just administrative costs.
Next year I'll ask for $10 and I plan to do this for as long as I live.
Again... http://www.braintumorkids.org/donate.html
Wednesday, July 9, 2014
Waking Up
Most of us know the old adage "time heals all wounds". What amount of time does this mean when your child dies? This sage expression does not apply to me. Today is harder than yesterday. This second year without Bea is so much harder than last year.
The reality of losing Bea is just really starting to take hold. It's HARDER not to see her today than it was the day after she died. Because it's been so very long. The more time that passes the more I want to see her. It's a visceral need. I want to tickle her foot. I want to give her a hug. I want to hear her for real, not in a recording. But I can't.
For the last 18 months I've been able bear down and push past the gloomy moments. I'd have a good cry and feel better but never had a really sad day. Now I'm having sad days, even sad weeks. The grief that was so close to the surface has dug in deeper and sticks around. Recognizing that my grief is now becoming depression is very difficult. I don't want to admit it because I don't want to think that anything about Bea, even her death, could cause me any kind of pain. She was too wonderful and there's no way that she could ever hurt me.
Even with all of this sadness I am living a fairly happy life. I have a job I love, indulge in hobbies, hang out with friends, play with my son and his friends and do all the regular stuff a mom and wife does. So, how do I do it? How do I go to sleep feeling peaceful almost every night? How do I get up every morning and look forward to the day? Because the grief and sadness are still bearable. I look to the future with positivity and don't worry that I'll be sad again. Because I will. I'll have a moment of deep grief and cry for however long I need. Then I'll start thinking of the great life I gave my daughter and I'll cry again. But I'll get through that moment. This grief is simply evidence of real love.
The reality of losing Bea is just really starting to take hold. It's HARDER not to see her today than it was the day after she died. Because it's been so very long. The more time that passes the more I want to see her. It's a visceral need. I want to tickle her foot. I want to give her a hug. I want to hear her for real, not in a recording. But I can't.
For the last 18 months I've been able bear down and push past the gloomy moments. I'd have a good cry and feel better but never had a really sad day. Now I'm having sad days, even sad weeks. The grief that was so close to the surface has dug in deeper and sticks around. Recognizing that my grief is now becoming depression is very difficult. I don't want to admit it because I don't want to think that anything about Bea, even her death, could cause me any kind of pain. She was too wonderful and there's no way that she could ever hurt me.
Even with all of this sadness I am living a fairly happy life. I have a job I love, indulge in hobbies, hang out with friends, play with my son and his friends and do all the regular stuff a mom and wife does. So, how do I do it? How do I go to sleep feeling peaceful almost every night? How do I get up every morning and look forward to the day? Because the grief and sadness are still bearable. I look to the future with positivity and don't worry that I'll be sad again. Because I will. I'll have a moment of deep grief and cry for however long I need. Then I'll start thinking of the great life I gave my daughter and I'll cry again. But I'll get through that moment. This grief is simply evidence of real love.
Thursday, January 9, 2014
Zofran and Constipation
I don't often come across anything medically useful these days but when I do I will share what I find.
What I have to share is about Zofran. If you have a child on steroids it's possible that they are on Zofran to take away an nausea that may result from the steroids. Nausea is a common side effect but common doesn't mean that everybody gets it.
Beatrice did not but her oncologist assured me that Zofran was pretty harmless and it couldn't hurt to keep her on it just in case. Bea was on steroids for a long period at the end of the summer 2012 all the way through her last hospitalization in mid-November. During this time she had severe constipation. It was the only thing that made her cry for long periods of time. Seriously. During an entire year of surgeries, shots, hospital stays and headaches.
I asked her doctor if it could be the cancer and they seemed to think it was possible but didn't know for sure. So, I put her on a child's stool softener and laxative and within a day she was better. And I kept her on them.
I was in the ER with pneumonia last month and the doctor put me on Zofran for mild nausea. It was a familiar medicine so I didn't think anything of it. I became horribly constipated and took a laxative after 4 days of no pooping. It did the trick.
I Googled "Zofran" and found out that it can cause constipation, even though the label does not warn regarding. It's a common complaint among pregnant women who have morning sickness. They're prescribed Zofran and stop feeling nauseous and throwing up but then they can't poop.
It took a good week for the Zofran to get totally out of my system. I'm not saying that it's a bad medicine. If your child is throwing up or nauseous from steroids or chemo or any other medicine they need Zofran will make them feel better. But, if you give them Zofran keep track of their pooping. You might need to give them a laxative while they're taking that medicine.
What I have to share is about Zofran. If you have a child on steroids it's possible that they are on Zofran to take away an nausea that may result from the steroids. Nausea is a common side effect but common doesn't mean that everybody gets it.
Beatrice did not but her oncologist assured me that Zofran was pretty harmless and it couldn't hurt to keep her on it just in case. Bea was on steroids for a long period at the end of the summer 2012 all the way through her last hospitalization in mid-November. During this time she had severe constipation. It was the only thing that made her cry for long periods of time. Seriously. During an entire year of surgeries, shots, hospital stays and headaches.
I asked her doctor if it could be the cancer and they seemed to think it was possible but didn't know for sure. So, I put her on a child's stool softener and laxative and within a day she was better. And I kept her on them.
I was in the ER with pneumonia last month and the doctor put me on Zofran for mild nausea. It was a familiar medicine so I didn't think anything of it. I became horribly constipated and took a laxative after 4 days of no pooping. It did the trick.
I Googled "Zofran" and found out that it can cause constipation, even though the label does not warn regarding. It's a common complaint among pregnant women who have morning sickness. They're prescribed Zofran and stop feeling nauseous and throwing up but then they can't poop.
It took a good week for the Zofran to get totally out of my system. I'm not saying that it's a bad medicine. If your child is throwing up or nauseous from steroids or chemo or any other medicine they need Zofran will make them feel better. But, if you give them Zofran keep track of their pooping. You might need to give them a laxative while they're taking that medicine.
Tuesday, November 19, 2013
Quiet
I haven't felt particularly inspired to write about my life this fall. I've just very much needed the quiet.
Taking care of Bea and becoming a public figure of some sort was very much outside of my comfort zone. I am actually not an extrovert but had to put on that hat to provide her with the entertainment and company that she wanted and needed during the 12 months of her illness. Bea was a little shy but got a lot of energy from the buzz around her. This need fueled me to provide that for her and so I made sure she had it.
It's amazing what you can do and be given the right motivation. You can become someone you never knew you could be. Your natural inclinations are turned on their head and your life becomes virtually unrecognizable.
In many ways I lost myself in Bea's illness. It's the only time in my life when I found not being myself was OK. But with her death came not only grief but finding out who I am without her. I like who I am but I don't like being without her. And that's an essential part of who I am now and there's no choice about it. Part of accepting her death has been to accept who I am now.
And what I am is a quiet person who prefers the company of just one or a few friends, who is uncomfortable at parties and who prefers spending my day doing creating things by myself or hanging out with my family.
It's a pretty simple life but it's the one that I've made. And I like it.
Taking care of Bea and becoming a public figure of some sort was very much outside of my comfort zone. I am actually not an extrovert but had to put on that hat to provide her with the entertainment and company that she wanted and needed during the 12 months of her illness. Bea was a little shy but got a lot of energy from the buzz around her. This need fueled me to provide that for her and so I made sure she had it.
It's amazing what you can do and be given the right motivation. You can become someone you never knew you could be. Your natural inclinations are turned on their head and your life becomes virtually unrecognizable.
In many ways I lost myself in Bea's illness. It's the only time in my life when I found not being myself was OK. But with her death came not only grief but finding out who I am without her. I like who I am but I don't like being without her. And that's an essential part of who I am now and there's no choice about it. Part of accepting her death has been to accept who I am now.
And what I am is a quiet person who prefers the company of just one or a few friends, who is uncomfortable at parties and who prefers spending my day doing creating things by myself or hanging out with my family.
It's a pretty simple life but it's the one that I've made. And I like it.
Sunday, September 29, 2013
Just About Over
The month that I dreaded is just about over.
Bea's 8th birthday was this past Thursday. I took Lewis out of school and Chris took the day off. The plan was to go to the Atlanta Botanic Gardens but we just couldn't get moving. So we ended up going out to lunch and the park. Then we went home and spent some time in our back yard. Chris tended to the garden.
I know that a lot of friends read my blog to see what's really going on because in person I don't get really emotional. It makes me uncomfortable and that discomfort overrides any grief that I'm feeling. So I get upset and cry on my own, which is how I prefer it.
This month has been especially hard and it's made me a real pain in the ass some days. I'm cranky and pretty whiny when I talk to friends. It's a little hard to be positive some days. I don't ever spend a day sulking or sleeping or anything like that. But, the sunny side of things that usually presents itself isn't.
So I continue to do the things that I like to do and don't avoid anything that's difficult. The reason is that even when I'm down I am optimistic about my future. I hope that one day I'll be able to look at a photo album of Bea and feel happy. Maybe not blissfully happy but that'd be just fine.
Bea's 8th birthday was this past Thursday. I took Lewis out of school and Chris took the day off. The plan was to go to the Atlanta Botanic Gardens but we just couldn't get moving. So we ended up going out to lunch and the park. Then we went home and spent some time in our back yard. Chris tended to the garden.
I know that a lot of friends read my blog to see what's really going on because in person I don't get really emotional. It makes me uncomfortable and that discomfort overrides any grief that I'm feeling. So I get upset and cry on my own, which is how I prefer it.
This month has been especially hard and it's made me a real pain in the ass some days. I'm cranky and pretty whiny when I talk to friends. It's a little hard to be positive some days. I don't ever spend a day sulking or sleeping or anything like that. But, the sunny side of things that usually presents itself isn't.
So I continue to do the things that I like to do and don't avoid anything that's difficult. The reason is that even when I'm down I am optimistic about my future. I hope that one day I'll be able to look at a photo album of Bea and feel happy. Maybe not blissfully happy but that'd be just fine.
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