Life has gotten quite busy. Traveling, working, raising a 2 year old, summer, weddings and general life. But sometimes life sneaks up on you when you least expect it.
Today, most of the kids in the area started school. That means, All of Saoirse's friends started kindergarten. While this is heartbreaking in so many ways to me, I find myself wondering more about what it would have been like to have her here.
What would she look like?
Would she be going to school with her friends or would we have home schooled her?
Would she have needed to have hearing aids to hear the teacher?
Would she make friends?
Would she have picked out a Frozen backpack?
There are so many questions. Questions that will never have answers. Questions that will never need answers.
I hope that just maybe, some of the friends that knew her as a baby will remember her as they all make new friends at school.
Showing posts with label childhood cancer. Show all posts
Showing posts with label childhood cancer. Show all posts
Wednesday, September 2, 2015
Sunday, May 11, 2014
Mother's Day...
Family
We are a family of four that looks like three,
My mommy, my daddy, my sister and me.
If you look at our portrait, just three you will see,
No sister in sight, just mom dad and me.
But if you look closer, just past my head,
you will see a little something fluffy and red.
It's not a new blanket, that stays in my bed,
It's Elmo, in place of my sister instead.
If you ask mom how it feels to be a new mother,
She'll stop, and smile and remember another.
Then tell you her story, which is unlike any other,
For Saoirse made her mom, and I'm the LITTLE brother.
We are a family of four that looks like three,
My mommy, my daddy, my sister and me.
If you look at our portrait, just three you will see,
No sister in sight, just mom dad and me.
But if you look closer, just past my head,
you will see a little something fluffy and red.
It's not a new blanket, that stays in my bed,
It's Elmo, in place of my sister instead.
If you ask mom how it feels to be a new mother,
She'll stop, and smile and remember another.
Then tell you her story, which is unlike any other,
For Saoirse made her mom, and I'm the LITTLE brother.
Friday, December 13, 2013
Two Years....
Two years ago my world stopped right in front of my eyes - you left us. I let out a scream and gasped for air. My breath tried to go with you.
Somehow the world around us keeps turning. It should have stopped turning with your last breath.
I still wonder how it keeps going around. Maybe you are spinning it.
Somehow the world around us keeps turning. It should have stopped turning with your last breath.
I still wonder how it keeps going around. Maybe you are spinning it.
Wednesday, November 6, 2013
Today
Today has proven to be a trying day. Emotions off the hook. Frustrations high. Anger manifesting. Tears flowing. Mind reeling. No peace at all. This time of year is trying as it is, but this year seems to be taking its toll earlier and more intensely than I remember from last year. Two days of bereavement events probably didn't make it easier. I feel like life has built up this wall of busyness; of things that have to be done; of not having time to deal with feelings and clutter and everyday life; of sleep deprivation. That wall is like a tower of wooden blocks - teetering every so precariously on one another, just waiting for a heavy step, a light wind, a shift in the rug, to topple it over into a mess on the floor. Anticipating when the wall will fall is impossible. The anticipation creates strain of its own. Maybe I need to rethink what needs my focus the most. Too bad the world doesn't seem to want to back me up on that.
Saturday, October 26, 2013
Halloween....
By the time kids are 3, they have opinions on what they want to be for Halloween. I wonder what Saoirse would have wanted to be. A super hero, a princess, a fire truck, a train? She could have been anything she wanted. 3 is the perfect age to be anything you want. If only she could have been 3.
When you are bald and it's halloween, the best costume is Uncle Fester.
Saturday, October 19, 2013
Missing....
I often find myself missing having two kids. It seems to be getting more and more frequent that I look down at my baby boy playing on the floor and miss that there is not a 3 year old entertaining him. It's been making it hard for me to play with him myself. I shouldn't be the one entertaining him - it should be Saoirse. She should be shaking the toy while I do the dishes. She should be showing him how to hammer the toys, while I do a load of diapers. She should be reading him a book, while I clean the dining room. He's missing it - all of it.
We went to Russell Orchards to get cider doughnuts and take pictures with pumpkins. (We used to take Saoirse to Smolak's, but we just can't go back yet.) I wanted a picture of Lochlan in a bucket of pumpkins, just like we had done with Saoirse both halloween seasons. I brought her little hat that she had worn in the first one (I spared putting him in her same outfit). I went to put him in a nice big bucket - and promptly go yelled at. Apparently pumpkins roll - and I shouldn't be putting a baby where pumpkins might roll and crush him (like I was going to just leave him there for a while). I wanted to walk up to that man and ask him if he understood that my baby girl could never sit in another bucket of pumpkins. That she could never hold her brother in her lap and take a picture in the pumpkin patch. That the world is full of risk, and sitting in a bucket of pumpkins is the least of my worries for him. But I didn't. He didn't need that from me. I just took Lochlan to a different bucket and did it anyway.
I will put him in her pea pod costume and parade him down the street on halloween. I will put the photos of him next to the photos of her and see if they look the same - even though she was almost 2 months older at halloween, and he is just huge. I will do the things that I would have done if she was still here with us. But I will do it all while utterly missing her actually being here. And knowing that I only have 18 months of comparisons before there are no more side by sides. And when that day arrives, there will just be one picture going forward.
We went to Russell Orchards to get cider doughnuts and take pictures with pumpkins. (We used to take Saoirse to Smolak's, but we just can't go back yet.) I wanted a picture of Lochlan in a bucket of pumpkins, just like we had done with Saoirse both halloween seasons. I brought her little hat that she had worn in the first one (I spared putting him in her same outfit). I went to put him in a nice big bucket - and promptly go yelled at. Apparently pumpkins roll - and I shouldn't be putting a baby where pumpkins might roll and crush him (like I was going to just leave him there for a while). I wanted to walk up to that man and ask him if he understood that my baby girl could never sit in another bucket of pumpkins. That she could never hold her brother in her lap and take a picture in the pumpkin patch. That the world is full of risk, and sitting in a bucket of pumpkins is the least of my worries for him. But I didn't. He didn't need that from me. I just took Lochlan to a different bucket and did it anyway.
I will put him in her pea pod costume and parade him down the street on halloween. I will put the photos of him next to the photos of her and see if they look the same - even though she was almost 2 months older at halloween, and he is just huge. I will do the things that I would have done if she was still here with us. But I will do it all while utterly missing her actually being here. And knowing that I only have 18 months of comparisons before there are no more side by sides. And when that day arrives, there will just be one picture going forward.
Monday, June 17, 2013
Born Grieving....
While walking through the Dallas airport last November, I saw a big poster that made me think. It was a poster advertising grief camp for kids who have lost a family member. Then it hit me. My children are going to be born grieving. Grieving an older sister whom they will never meet, they will never get to hug, they will never get to play with, they will never get to learn from. Saoirse's siblings will never have one day without grief. Not one day of innocent childhood joy, free from cares, and free from fear. What kind of childhood is that? A childhood of sadness. Of missing an older sister from day one. Of grief counseling and bereavement camps. Of "yes, I have a sister, but I never met her." Of an imaginary friend who they didn't make up.
As I sit feeling a growing baby inside me, I wonder what kind of a person he will become. How Saoirse and her short life will shape his. How he will feel being born to grieving parents. How I, as a grieving mom, will be able to give him all he needs of me. I wonder what his childhood will be like. If he will resent being compared to Saoirse's "perfection" as a baby and toddler. If he will grow tired of hearing the same few stories about her life as he gets older. I want him to love his big sister, not resent her and her influence on our family's emotions.
I want him to look up to Saoirse and her strength, and strive to live each day as it comes and enjoy every moment. But I know he will have to endure dealing with coming to terms with death and pediatric cancer earlier than most people. He will have to learn early that no one is "safe," and that nothing is guaranteed. He will be forced to learn that life is short and precious, and that not only old people die. How will this shape his life? Will it make him want to live each day to it's fullest, or will he be a crazy daredevil who risks life and limb because he knows "life is short"?
I want Saoirse's short life to be a positive influence on her siblings' lives and characters. I want nothing more than for them to feel empowered to do something positive with their lives in her memory. I want them to feel that we, as their parents, are able to give them as much love as they deserve, and not hold them to impossible standards of achievement and perfection. We will have to work on this together; figuring it out as we go, learning from our mistakes. Maybe bereavement camps aren't such a bad idea after all.
As I sit feeling a growing baby inside me, I wonder what kind of a person he will become. How Saoirse and her short life will shape his. How he will feel being born to grieving parents. How I, as a grieving mom, will be able to give him all he needs of me. I wonder what his childhood will be like. If he will resent being compared to Saoirse's "perfection" as a baby and toddler. If he will grow tired of hearing the same few stories about her life as he gets older. I want him to love his big sister, not resent her and her influence on our family's emotions.
I want him to look up to Saoirse and her strength, and strive to live each day as it comes and enjoy every moment. But I know he will have to endure dealing with coming to terms with death and pediatric cancer earlier than most people. He will have to learn early that no one is "safe," and that nothing is guaranteed. He will be forced to learn that life is short and precious, and that not only old people die. How will this shape his life? Will it make him want to live each day to it's fullest, or will he be a crazy daredevil who risks life and limb because he knows "life is short"?
I want Saoirse's short life to be a positive influence on her siblings' lives and characters. I want nothing more than for them to feel empowered to do something positive with their lives in her memory. I want them to feel that we, as their parents, are able to give them as much love as they deserve, and not hold them to impossible standards of achievement and perfection. We will have to work on this together; figuring it out as we go, learning from our mistakes. Maybe bereavement camps aren't such a bad idea after all.
Saturday, May 11, 2013
Mother's Day...
Mother's Day.....
It's a day set aside each year to show your appreciation to your mom and celebrate those who are mothers. I remember being a kid and going to crafts in the park, picking out a gift for my mum, and wrapping it up knowing she would love what I found for her. I'm pretty sure that for the most part they were all things she didn't need and just took up space, but she always kept them (the only one I remember her using was the pocket tissue holder that lingered in her purse until I was at least in high school). I think to her, it was the fact that we went out and chose it on our own that made her smile. My poor mother has gotten her fair share of strange, non-usefull gifts from me and my sister over the years, and unfortunately she is a packrat, so I'm pretty sure they are all still somewhere in her house.
For those of us who have lost our children, mother's day is usually a dreaded day as it approaches. It's a difficult concept to grasp - do we celebrate our motherhood, or do we reject the made up holiday and steer clear of the cards and restaurant carnations? I know people on both sides, and I can't fault either one. Emotions are nasty bitches sometimes, and no one should be told how to feel.
So far I haven't had any luck with mother's day. My first pregnant mother's day, I was due just 3 weeks later, and I was tired, cranky, uncomfortable, bloated and pissy. Pretty standard for 8 and a half months pregnant. My second mother's day was spent in children's hospital. Saoirse had been diagnosed just 3 days prior, and we were doing her first round of chemo. I spent the whole day with her, holding and cuddling her, playing with her and focusing on making her healthy again. It may not have been my ideal thought of what mother's day should be, but in reality, it was probably one of the best mother's days I'll have. I got to focus just on Saoirse - the little girl that made me a mum - and nothing was expected of me other than that. Last year, she was gone. I didn't feel like a mum. I felt like a failure. I had been unable to save her; unable to make her better; unable to give her the childhood she so deserved. Cancer had stolen my baby, stolen my motherhood, stolen my mother's day. I felt defeated.
This year I feel a little different. Of course, I still hate cancer for what it did to my family - for tearing my Saoirse away from me and leaving a hole in my heart and my life. But I am still a mum. I was a mum starting the day I knew Saoirse was growing inside me. I was stuck with the title, and there was nothing I could do to loose it. From that moment on, she always came first, and that hasn't changed at all today. She is my first thought in the morning, and my last at night. She is my focus each day, and she keeps me running.
And now there's a feisty little man awaiting his summer birthday. (Luckily, I'm not 8 1/2 months pregnant, only 6 1/2 so I'm not miserable (yet)). His acrobatics remind me that he's growing strong, and that he will soon take over my time and energy. He will be my living child; the one that others "see" as making me a mum; my outward/public sign of motherhood. And he will be all those things, but Saoirse will still be the one who made me a mother. For it was she that changed my life and transformed me from a woman to a mum - a lifetime commitment, a lifetime dedication, a lifetime joy.
It's a day set aside each year to show your appreciation to your mom and celebrate those who are mothers. I remember being a kid and going to crafts in the park, picking out a gift for my mum, and wrapping it up knowing she would love what I found for her. I'm pretty sure that for the most part they were all things she didn't need and just took up space, but she always kept them (the only one I remember her using was the pocket tissue holder that lingered in her purse until I was at least in high school). I think to her, it was the fact that we went out and chose it on our own that made her smile. My poor mother has gotten her fair share of strange, non-usefull gifts from me and my sister over the years, and unfortunately she is a packrat, so I'm pretty sure they are all still somewhere in her house.
For those of us who have lost our children, mother's day is usually a dreaded day as it approaches. It's a difficult concept to grasp - do we celebrate our motherhood, or do we reject the made up holiday and steer clear of the cards and restaurant carnations? I know people on both sides, and I can't fault either one. Emotions are nasty bitches sometimes, and no one should be told how to feel.
So far I haven't had any luck with mother's day. My first pregnant mother's day, I was due just 3 weeks later, and I was tired, cranky, uncomfortable, bloated and pissy. Pretty standard for 8 and a half months pregnant. My second mother's day was spent in children's hospital. Saoirse had been diagnosed just 3 days prior, and we were doing her first round of chemo. I spent the whole day with her, holding and cuddling her, playing with her and focusing on making her healthy again. It may not have been my ideal thought of what mother's day should be, but in reality, it was probably one of the best mother's days I'll have. I got to focus just on Saoirse - the little girl that made me a mum - and nothing was expected of me other than that. Last year, she was gone. I didn't feel like a mum. I felt like a failure. I had been unable to save her; unable to make her better; unable to give her the childhood she so deserved. Cancer had stolen my baby, stolen my motherhood, stolen my mother's day. I felt defeated.
This year I feel a little different. Of course, I still hate cancer for what it did to my family - for tearing my Saoirse away from me and leaving a hole in my heart and my life. But I am still a mum. I was a mum starting the day I knew Saoirse was growing inside me. I was stuck with the title, and there was nothing I could do to loose it. From that moment on, she always came first, and that hasn't changed at all today. She is my first thought in the morning, and my last at night. She is my focus each day, and she keeps me running.
And now there's a feisty little man awaiting his summer birthday. (Luckily, I'm not 8 1/2 months pregnant, only 6 1/2 so I'm not miserable (yet)). His acrobatics remind me that he's growing strong, and that he will soon take over my time and energy. He will be my living child; the one that others "see" as making me a mum; my outward/public sign of motherhood. And he will be all those things, but Saoirse will still be the one who made me a mother. For it was she that changed my life and transformed me from a woman to a mum - a lifetime commitment, a lifetime dedication, a lifetime joy.
Monday, February 4, 2013
World Cancer Day
Today is World Cancer Day. I fight for Saoirse, and I know many of you do as well. My favorite awareness video so far has been the newest one created by St Baldricks - The Childhood Cancer Ripple Effect. I wanted to share it with you all, as it really hits it right on the head. We can win the fight, but we have to do it together.
Sunday, September 30, 2012
How YOU can help a child with cancer TODAY!
September is Childhood Cancer Awareness Month! Since you read my blog, and probably follow us on Facebook, you most likely already know this. Each day of September I featured a different tip for how ordinary people could do something to help children battling cancer. Here are all 30 posts, which feature over 40 different ways that you and everyone you know can help. I pass this information on to everyone I meet. Will YOU?
How YOU can help a child with cancer TODAY!
#1 - Kids spend countless hours in the car traveling to and from treatments. Think of things that might entertain them - toys, games, books, music - and donate them to your local children's hospital oncology unit.
Want to help out the parents? Donate a gas gift card to help pay for some of those trips (which can often bring them over state borders).
#2 - Many kids spend a lot of time - sometimes weeks to months at a time - inpatient at the hospital. Hospital food is not exactly your mom's cooking, and often not even the nutritious food that they need to help their little bodies fight their hardest.
Call your local children's hospital oncology floor and ask how you can send in some nutritious food for the patients. You could send a fruit box (like theThe FruitGuys send by mail) that could give fresh fruit to patients and families once a week.
Or ask if you can sponsor a patient/family meal night on the floor. Many times these consist of pizza or sandwiches, but get creative and offer suggestions that might be different and exciting for the kids who have been there for months.
#3 - Kids and families never get a day off from fighting cancer. Often kids end up spending holidays in the hospital, stuck in their rooms while receiving treatment.
How can you help? Instead of lounging on the couch all day, take some time to do something for those kids stuck in a hospital room. Make a hat, blanket or pillowcase; volunteer on the floor for the day; donate blood or platelets; have a yard sale and donate the proceeds.
If you know a family personally, consider doing a few of these ideas. Cook a meal and drop it off; mow their lawn; wash some laundry; vacuum their house before they come home. Ask them what they need, and tell them you truly want to help.
Get creative with your day off, and do something to make a difference in the lives of those fighting so hard.
#4 - Now that labor day is over, most kids are back in school. Many kids on treatment won't get to attend school this year at all. There are a few ways that you can help these kids. (Remember to get creative too!)
If you are a teacher or tutor, consider volunteering at the hospital to help older kids with school work (many will continue to do the work so they can advance with their class). Check with your local hospital to see if they offer a program (and suggest one if they don't).
If you have a child in school who has a classmate going through treatment, suggest an assembly (if one hasn't been done) to talk to the other students about childhood cancer. Get that child's classmates involved by writing cards, doing crafts, or even holding a fundraiser (check with the school board to see if it is allowed on school time, or if you need to do it after school hours).
There are many kids who will miss seeing their classmates, and can't have visitors because of the risk of infection. Offer to coordinate a video chat with the child's class so everyone can say hello and see each other through the magic of the internet!
There are so many other ways you could help. Get creative, and let the kids get creative as well!
#5 - Today's tip is probably one of the biggest and most important. Kids with cancer have countless blood transfusions during treatment. Without blood products donated by healthy strangers, they can't survive their treatments. So this one is simple.....
GIVE BLOOD! Not only red blood cells, but platelets! Giving whole blood is quick and easy, and you can do it every 56 days. Platelets take a little longer sitting in the chair, but you can donate every 8 days! (as long as you are not donating plasma at the same time) Platelets are the hardest to come by in the blood bank, but both whole blood and platelets are important to kids receiving treatment.
Want to go the extra mile? Register to be a bone marrow donor! Some kids' only chance is to find a stranger whose bone marrow is a perfect match for his/hers. And registering is as simple as swabbing the inside of your cheek. visit www.marrow.org to find out how.
#6 - All kids love music - and love it even more when they can make it themselves. Saoirse loved having "jam" sessions with us with all her music toys. A couple ways you can help kids with cancer enjoy the music...
Donate some music toys to the oncology unit. Think maracas, xylophones, small drums, bells, shakers, tambourines, and triangles. (Remember, they will have to be washed and disinfected for use by multiple kids, so plastic and metal are better than wood or paper.)
Do you play an instrument? Volunteer to spend a day playing music to the kids and their families. Bring some instruments (like the ones above) for them to join in and make some music magic!
Get crafty! Making instruments is easier than you think. Have a plastic bottle and some rice? Instant shaker toy. Rubber bands and a tissue box? Guitar player in training. Gather together some supplies and host a "Make your own instrument" day in the play room at the hospital. At the end, have a jam session with all the different instruments. (get creative with the instruments and look online to find ideas)
Have FUN!
#7 - This one will help more kids than just the ones with cancer. Kids in the hospital end up spending a lot of time in front of the TV. Whether they are feeling sick, stuck in bed because of surgery, therapy, etc., or just need to be distracted, TV is a tool that parents and caregivers use to help ease the boredom of hospital life. So today's tip is simple (some of you may have already done it this year)...
Donate to your local PBS station. Public television is wonderful for kids, especially the young ones. Shows like Curious George, Sesame Street, and Dinosaur Train got Saoirse through the roughest of days. They made her smile, and allowed us to sit down. Without Public Television, we would have been stuck searching for options. So donate to the station that your local children's hospital tunes in to every day. Even better, try to direct your funding to the kid's programing budget (some stations have memberships that are specifically kid targeted, but check with your station).
So help keep "Emmo" on TV for Saoirse, and for all the kids who need to smile each day.
#8 - Nurses. The people who (next to parents) spend the most time with young cancer patients. They work day in and day out to make sure that patients and families have everything they need. They also get the brunt of complaints, and are often yelled at, puked on, peed on, kicked, smacked, bitten, and otherwise tortured. They invest their time, emotions, and lives into their patients, and can never be thanked or appreciated enough.
So think of a way you might help those nurses who spend so much of their lives helping these kids through the horrors of treatment. Here are a couple I thought of, but please get creative - or just ask them what they need!
Buy them lunch (or dinner for the overnighters) - think healthy, fresh foods that will give them energy to continue through their 12 hour shift (fresh fruits and veggies, and things they can grab and eat on the run).
Are you a massage therapist? Offer to go in and give ten minute massages. Not a massage therapist? Send over some gift certificates for the nurses (think about getting a group of friends together and you each can "sponsor" a nurse).
Send some cards to say thank you! Patients and families try and remember to thank their nurses, but sometimes an extra thank you can help a nurse get through the day.
Get creative! (Remember, don't send flowers - the oncology floors do not allow them.)
#9 - Since today's ended up being late in the day (sorry, I was in the car all day), we will go with a simple one. The following links are ways that YOU can make a donation to childhood cancer research without even trying (or paying on two of them).
Click this link: ( http://www.causes.com/
Click this link: ( http://www.facebook.com/
Click this link: ( http://itunes.apple.com/
Thanks everyone! I know we can get everyone to do this. Think of how much money we can give just by clicking links! (If everyone who likes our facebook page did just the first two things, we could raise $34,000 without spending a dime!)
(*I know the photo seems a little random, but I don't have on of her on the computer. Watching the
iPad was the closest I could get :) )
#10 - Little kids live by example, and copy almost everything. If the majority of their time is spent at the doctors, they want to help out. During clinic and hospital stays, Saoirse's favorite "toy" was the blood pressure cuff. She was a big help in putting it on. She also liked the thermometer (and even took her own temperature once!) So for today's tip...
Donate a kid friendly doctors kit to the play rooms at the hospital and clinic (I think Fisher Price makes one). This may sound strange in a place where they can play with all the real stuff, but the real stuff is expensive, and not usually allowed to be chewed on. Plus, letting them play with the toy versions gets them familiar with the tools of the trade, and makes them less afraid when they see the real thing coming at them in a stranger's hands. (Yes, most hospitals have some toy doctor kits already, but the pieces are small, and go missing very quickly.)
Can't find a kid friendly toy kit? Find a book or two that talks about taking a trip to the doctor. I'm sure that there are some good ones out there. Look for one that talks about not being scared, and how the doctor is there to help.
Doctors' offices are scary, especially when you don't know what everything is. Anything that can make the process less scary can reduce the stress of going to the doctor. Do you have any other ideas? Share them with us!
#11 - Today's post was inspired by the memorial at St. Paul's chapel across the street from ground zero. There, people sent all sorts of well wishes to the victims, survivors, families, and volunteers after 9/11. There was a display that got my attention - thousands of tiny paper cranes strung together, folded by japanese students and sent for good luck (legend has it that if you fold 1000 origami paper cranes you will be granted a wish). When Saoirse and I were on treatment, my friends folded us 1000 paper cranes to hang in our house. We love our cranes, and loved that people wanted us to be able to get well. ( if you haven't, read Sadako and the Thousand Paper Cranes)
So today's tip is for the crafty ones (really most people can fold cranes - its a simple one). Fold cranes to send to a fighting child, or to decorate the hospital. This is a great project for school children to get involved in. Tell them what they are for and ask them to decorate the cranes. Write messages on them before you fold them. Draw artwork on the paper before folding. String them together with ribbon or fishing line. The possibilities are endless. Here's a link to how to fold a paper crane. (www.wikihow.com/
#12 - Today is inspired by my current project of cleaning out everything we don't need in our house. If you are doing a similar clean out, you may find some things that would make great donations to your local hospital or clinic. Here are some things that you might find....
Craft supplies! We all have too many of them. If you find some that you know you will never use, pack them up and bring them to the child life specialist. They will be able to use them in the play rooms and for crafts with the kids.
Books! Especially kids books. Keep those that you want for sentimental reasons, but donate those that you don't need any more. Books get used often on the oncology floors, but they have to be wiped down and disinfected after each kid uses them. This means they wear out faster.
Glider chairs! When you are no longer rocking your kids to sleep at night, you may want to get rid of your glider chair (rocking chairs may be accepted by your hospital, some don't accept rockers). Consider donating it to the hospital. You may need to recover the cushions in vinyl, or get vinyl covered ones as replacements because they will need to be able to be disinfected.
Unused electronics! Think old video games, gaming consoles, televisions, computers, iPads, DVD players, learning games (leap pad, etc), hand held games (nintendo DS, etc)...... Anything you think that a kid might want to use while in treatment (remember, teens will be there too). Kids often need things that can entertain them when they can't get out of bed or leave the floor during treatment. Check with your hospital to see what they need.
Have lots of stuff that might not be useful in the hospital but might be useful to others? Have a yard sale and donate the proceeds! Get the neighborhood involved and you can earn even more! Can't have a yard sale? Try Craigslist!
#13 - Pets are often a child's best friend. Saoirse's best friend was Fallon, our extremely patient Boxer. When she was in the hospital, she missed Fallon, and was so excited to see her when she came home.
Today's tip is to support therapy dog programs. The Ronald McDonald House in NYC has a page that describes just why these animals are so important to kids going through difficult treatments (www.rmh-newyork.org/
If you have a therapy dog, consider joining a group that makes rounds to local hospitals. Don't have a therapy dog but think it might be something you're interested in? Look for local training centers in your area.
Looking for a way that kids can have their own dog "with" them while at the hospital? Sign up to receive our newsletter (www.FitzgeraldCancerFund.o
#14 - Today's tip is a fun one, and one that brings me back to my art school days. Bright, colorful art can bring a smile to anyone's face, and I love how kids light up when they see art made just for them.
So how can you help? Sponsor a pair of Peach's Neet Feet! Madison is a wonderful artist who donates her time and talent to paint amazing, personalized shoes for kids battling for their lives. Each pair is made for that child with love, and heArt, and kids just love having their own "magic shoes" to get them through the tough days.
So go to her website - www.peachsneetfeet.com - and find out how YOU can get involved by donating shoes, sponsoring a child, becoming a shoe fairy, or buying a t-shirt! There are so many ways to help and pay it forward.
"Peach" painted a pair of Saoirse's shoes after she died so we could have them. We love them. To read about Saoirse's Magic Shoes, click here -www.peachsneetfeet.com/
#15 - Today's post is about food (again). One of the greatest things that helped us when we were going through treatment was getting meals dropped off for us to eat. (Hospital food gets boring, and it's not a home cooked meal.)
Today's tip is to make some meals for a family going through treatment. Try to put the meals in individual portions in containers that can be microwaved.
Meal Train (www.mealtrain.com) is a great way to coordinate meals for delivery from different people in your community. People can sign up for a day that works for their schedule, and put in what they will bring. Try and bring a variety of foods (check what others are bringing). If you are setting up the site, make sure to ask the family if they have any food restrictions or preferences, and where food should be dropped off.
Sometimes a home cooked meal can fix a tough day.
#16 - All kids like to color. Crayons are a mom's best friend, especially in a hospital setting. Saoirse would spend hours with the bingo markers painting everything, making herself the final piece of art.
Today's tip is not just for artists, but for anyone who likes to encourage creativity. So here are my two ideas for bringing art to kids with cancer...
If you're an artist, volunteer to paint a mural or two at the hospital and/or clinic. Murals are often painted on room windows, and are great for kids who can't leave their room. Scenes that take the kids "out" of the hospital and into a wonderful imaginary land are great (Saoirse particularly liked the ones of the giraffes in africa).
Have extra art supplies around? Like to be silly and draw crazy things? Bring the supplies to the child life specialist to donate to the kids. Create a crazy project for them, or better yet, volunteer to do art with the kids. Inspire them to draw their dreams and be creative.
Art can help in so many ways, and it's a great pick me up for kids that are stuck in hospitals and clinics during difficult treatments.
#17 - Many families battling pediatric cancer spend lots of family birthdays in the hospital. Last year we spent Mike's birthday (which is today!) in the hospital after Saoirse's surgery. The nurses do a great job making the kids feel special when it's their birthday, but they could always use a little help.
Today's tip is to sponsor a hospital birthday party! Think about things that you might find at a kid's birthday party - balloons (remember mylar only no latex), hats, streamers, treats, cards, banners, and of course cake! Call over to the hospital and see if you can sponsor a birthday bash for the kids who have birthdays coming up. You could do it for the month, or the week, or sponsor a single family. Talk to the child life specialist to find out what they think is best.
Feeling special on your birthday is something that makes a big difference when you feel so different than other kids your age. This could be really special for the teens going through treatment, as they often feel alienated and separated from their peers. Think about things that a teen might like for his/her birthday and send them over. Maybe a new video game to play, a new book to read, a canvas and some paints. Again, call and ask the child life specialist and see if they know a child who needs an extra special pick-me-up on his/her birthday.
#18 - St. Baldricks Foundation is dedicated to funding research for pediatric cancers. They are doing an amazing job, and have just teamed up with Stand Up To Cancer to form a Pediatric Dream Team!
If you want to find a creative way to donate to pediatric cancer research, consider joining a local head shaving event that benefits St. Baldrick's Foundation (www.stbaldricks.org). Hair is just hair, and it will grow back eventually. Show your solidarity with kids who go through chemo, and shave your head! (I recommend doing it in the summer, bald head = cold head!)
Saoirse's first haircut was a shave after her second round of chemo. Once it was cut, she would rub her fuzzy head and giggle. So shave your head, and remember to giggle when your rub it for Saoirse! If you would like to honor her when you are doing your fundraising, her Kid Page iswww.stbaldricks.org/kids/
#19 - Awareness is the key to getting more people involved in finding a cure for Neuroblastoma.
So yesterday's tip - SHARE! Share our story by linking to our Facebook -Fitzgerald Cancer Fund - or website - www.FitzgeraldCancerFund.o
Tell the world about Neuroblastoma - The more people looking, the faster we will find a CURE!
#20 - Balloons!!! Balloons make any day better! Saoirse used to get so excited over the balloons at the hospital. She would collect them from anywhere she could steal them from. Mostly, they had plain ones on the floor - stars, circles, moons. But the shaped and themed ones were a huge hit when they came around.
Today's tip is to send some balloons to the oncology floor / clinic! Remember that balloons have to be mylar, as most children's hospitals are latex free and won't allow latex balloons. Get the fun ones - numbers, characters, pictures, sports, fairies... the possibilities are endless. They don't have to be expensive - most dollar stores sell mylar balloons! Call up to the ward/clinic and find out how many patients they have that day and bring one for each kid (get one or two extras in case one pops or a kid comes in emergently). You may not be able to pass them out to the kids yourself, but you should be able to bring them up to the nurses station (check though, with flu season coming up, they will shut down the wards to outsiders to avoid infection).
Balloons can make the day, and they are well loved by all kids! Think about bringing some that the older kids will like too.
#21 - Hospital rooms are quite stark - white sheets, white walls, white pillows. One of the easiest and quickest ways to liven up Saoirse's room was to put up blankets and pillowcases. They were always available for the kids up on the hospital floor. It was a wonderful way to brighten up an otherwise drab room.
Today's tip is to volunteer to make quilts, blankets, or pillowcases for the oncology ward to have available for kids. One great organization is Quilts for Kids (www.quiltsforkids.org). You can visit their website for more info on working with them. Pillowcases are great too, and ConKerr Cancer is a great organization who donates pillowcases to oncology units (conkerrcancer.org). If you want directions on how to make them visit this website (conkerrcancer.org/
So make something to brighten their day, and their stay.
#22 - Today is the first day of fall, which means it's getting colder out there.
Today's tip is to make hats! Any kind of hat. Knit, crochet, fleece, cotton, beanies, brimmed hats, hats that look like kermit the frog.... Make them fun, and make them colorful. Hats are always welcome at the hospital and clinic. Little bald heads get super cold!
There are some great organizations that will take your hats too, like PatPat's Hats here on the north shore. Find one in your area, and donate a bunch. Do you have a knitting group? Get everyone involved! And if you love Pinterest, they have great free hat patterns you can find! Have fun!
#23 - Tonight, at 9pm, a special thing happens. A documentary showing the truth about childhood cancer premiers. TheTruth365 is working to spread awareness about the reality of childhood cancer. It's not just cute bald heads, and smiling faces. It's not just lonely hospital stays and lots of hand sanitizer. There is so much more that is never told, never shared, never looked at - because it's just too hard. But it needs to be told, needs to be shared, needs to be looked at - because it's just that important. The reality needs to be out there, the reality needs to be recognized by the public that doesn't live it every day. This reality will bring the awareness, which brings the funding, which funds the research, which finds the CURE! Awareness is this first step, and this film is a great and easy way to spread it.
So tonight -Sept 23 NOW SEPT 30 - at 9pm, go to www.TheTruth356.org and watch the film on their YouTube channel. Share the link, put the video out there, get others to watch and listen and become aware. That's the first step, and you have the power to help spread that awareness. Will YOU make a difference by just clicking SHARE?
To preview the film, and see the 8 Preview videos, visitwww.youtube.com/user/
(UPDATE: The release of the film was postponed until Sunday, Sept 30, 2012. Watch Then!)
#24 - Having cancer is stressful for everyone involved. Kids are usually happy go lucky, and bounce through days of chemo, but it puts a huge amount of stress on their bodies. Combine that with stressed parents, friends, doctors and nurses, the tension can become overwhelming even for the littlest fighters.
Alternative therapies can help relieve some of that stress. Therapies like acupuncture, acupressure, massage and reiki all help alleviate stress on the body, as well as other treatment side effects, and are almost always safe to receive during treatments. Here in New England there is an organization called Lucy's Love Bus. This non-profit organization helps pediatric cancer patients receive these integrative therapies, as well as educate the medical community about how these therapies can help their patients. Visit their website, www.lucyslovebus.org to learn more and to donate to their programs.
Many children's hospitals are also beginning to develop outpatient clinics that offer alternative therapies. Check with your local hospital and see if you can donate directly to that program.
Many nurses also learn to practice Reiki so that they can better ease the stress of their patients. Many of Saoirse's nurses would do reiki with her to help her settle down for bed. It was so great. She always slept better after as well. So support alternative therapy programs in your area, and help to alleviate the stress on patients and families.
#25 - Grandparents and extended family are a huge part of the support system of a child who is battling cancer. Not only can they help with the day to day care and challenges, but they also are a huge part of the emotional support for the parents. They also spend a lot of their own money and time helping out at home and at the hospital.
So today's tip is to help the Grandparents and extended family out! Send them a card, a gift certificate for a massage, meals, new slippers for staying at the hospital... be creative!
Another way to help here in the Boston area is to donate to the Alexander The Great Fund for Family Support in Pediatric Oncology/Hematology at Tufts Medical Center Floating Hospital For Children (www.tuftsmedicalcenter.org
#26 - Today is all about helping families when they are far from home for treatment. Families need a safe place to go when they are out of their home environment - one that's free of germs, and caters to the special needs of kids going through chemotherapy and radiation.
The Ronald McDonald House Charities provide housing close to many major hospitals, and cater to kids with compromised immune systems. We were lucky to be able to stay at the RMH in New York while we were at Sloan Kettering. They are so warm and loving there, and they really made our stay easier than it could have been. They do so much for the families fighting with their children.
So make a donation to Ronald McDonald House Charities (RMHC). They have many ideas for what to donate, as it doesn't have to be money. There are always different needs at different houses, so check with your local chapter and find out what they need most. (We even dropped off a few grocery bags of food for the families once). They are an organization that truly puts the kids first.
#27 - As Childhood Cancer Awareness month will soon be over, we all need to make sure that the conversation doesn't end. The best way to bring up childhood cancer to a complete stranger? Wearing items that someone would ask you about! Wristbands, pendants, t-shirts, bracelets and gold ribbons can all be the beginning of a conversation about awareness, compassion, and strength!
So grab a ribbon, put on a wristband, throw on a t-shirt and start a conversation! We have some items for sale in our online shop -www.FitzgeraldCancerFund.o
Some places you might find items: The Sierra Rayn Foundation, Gold: The New Pink, The Ronan Thompson Foundation (look on the Rockstar Ronanblog for merchandise). (If you want your site added, comment below and I'll add you!)
#28 - Today's post will help families to create lasting memories. Parents who loose their child only have photos and videos to look back on to help them remember. So to them, those photos are precious and important. Even families who's child survives wants to remember smiles more than the tears, and photos are a great way to do just that.
Today's tip has two options. The first is for photographers. Become a photographer for the Tiny Sparrow Foundation or Flashes of Hope. These groups of volunteer photographers offer photo sessions to families dealing with childhood cancer. They create wonderful memories for those families, and pieces of art that they will treasure forever. If you could lend your skills and talents to helping a family remember their child's smiles forever, please consider joining with them.
Not a photographer? Donate to these organizations! Flashes of Hope even goes to the hospital to photograph the kids that don't get to leave their rooms. These family photographs mean so much to the families and can truly be the art that keeps their child alive for them forever. Also, if you know of a family who's child is fighting cancer, suggest a photo session to them. Try and coordinate with them. With so much going on, it's hard to think about pictures. We never got around to it, and I always wish we had.
#29 - This is the second to last day of Childhood Cancer Awareness Month. Tomorrow is the release of the film TheTruth365. Today's task? Alert the MEDIA!
Let's get this out there. Let's keep the awareness going and build our audience. Lets share this with everyone we can think of and share the stories of the kids and families that have been devastated by childhood cancer.
Share our story at the same time and lets start getting some force behind us moving toward an end to Neuroblastoma and a real life for these kids after treatment!
So call your local station, write a letter, text their tip line, post to their Facebook page, twitter them all day! We can do it. There are 5,673 people who like this page. Let's Flood the Media!
How YOU can help a child with cancer TODAY!
#1 - Kids spend countless hours in the car traveling to and from treatments. Think of things that might entertain them - toys, games, books, music - and donate them to your local children's hospital oncology unit.
Want to help out the parents? Donate a gas gift card to help pay for some of those trips (which can often bring them over state borders).
Call your local children's hospital oncology floor and ask how you can send in some nutritious food for the patients. You could send a fruit box (like theThe FruitGuys send by mail) that could give fresh fruit to patients and families once a week.
Or ask if you can sponsor a patient/family meal night on the floor. Many times these consist of pizza or sandwiches, but get creative and offer suggestions that might be different and exciting for the kids who have been there for months.
#3 - Kids and families never get a day off from fighting cancer. Often kids end up spending holidays in the hospital, stuck in their rooms while receiving treatment.
How can you help? Instead of lounging on the couch all day, take some time to do something for those kids stuck in a hospital room. Make a hat, blanket or pillowcase; volunteer on the floor for the day; donate blood or platelets; have a yard sale and donate the proceeds.
If you know a family personally, consider doing a few of these ideas. Cook a meal and drop it off; mow their lawn; wash some laundry; vacuum their house before they come home. Ask them what they need, and tell them you truly want to help.
Get creative with your day off, and do something to make a difference in the lives of those fighting so hard.
#4 - Now that labor day is over, most kids are back in school. Many kids on treatment won't get to attend school this year at all. There are a few ways that you can help these kids. (Remember to get creative too!)
If you are a teacher or tutor, consider volunteering at the hospital to help older kids with school work (many will continue to do the work so they can advance with their class). Check with your local hospital to see if they offer a program (and suggest one if they don't).
If you have a child in school who has a classmate going through treatment, suggest an assembly (if one hasn't been done) to talk to the other students about childhood cancer. Get that child's classmates involved by writing cards, doing crafts, or even holding a fundraiser (check with the school board to see if it is allowed on school time, or if you need to do it after school hours).
There are many kids who will miss seeing their classmates, and can't have visitors because of the risk of infection. Offer to coordinate a video chat with the child's class so everyone can say hello and see each other through the magic of the internet!
There are so many other ways you could help. Get creative, and let the kids get creative as well!
#5 - Today's tip is probably one of the biggest and most important. Kids with cancer have countless blood transfusions during treatment. Without blood products donated by healthy strangers, they can't survive their treatments. So this one is simple.....
GIVE BLOOD! Not only red blood cells, but platelets! Giving whole blood is quick and easy, and you can do it every 56 days. Platelets take a little longer sitting in the chair, but you can donate every 8 days! (as long as you are not donating plasma at the same time) Platelets are the hardest to come by in the blood bank, but both whole blood and platelets are important to kids receiving treatment.
Want to go the extra mile? Register to be a bone marrow donor! Some kids' only chance is to find a stranger whose bone marrow is a perfect match for his/hers. And registering is as simple as swabbing the inside of your cheek. visit www.marrow.org to find out how.
#6 - All kids love music - and love it even more when they can make it themselves. Saoirse loved having "jam" sessions with us with all her music toys. A couple ways you can help kids with cancer enjoy the music...
Donate some music toys to the oncology unit. Think maracas, xylophones, small drums, bells, shakers, tambourines, and triangles. (Remember, they will have to be washed and disinfected for use by multiple kids, so plastic and metal are better than wood or paper.)
Do you play an instrument? Volunteer to spend a day playing music to the kids and their families. Bring some instruments (like the ones above) for them to join in and make some music magic!
Get crafty! Making instruments is easier than you think. Have a plastic bottle and some rice? Instant shaker toy. Rubber bands and a tissue box? Guitar player in training. Gather together some supplies and host a "Make your own instrument" day in the play room at the hospital. At the end, have a jam session with all the different instruments. (get creative with the instruments and look online to find ideas)
Have FUN!
#7 - This one will help more kids than just the ones with cancer. Kids in the hospital end up spending a lot of time in front of the TV. Whether they are feeling sick, stuck in bed because of surgery, therapy, etc., or just need to be distracted, TV is a tool that parents and caregivers use to help ease the boredom of hospital life. So today's tip is simple (some of you may have already done it this year)...
Donate to your local PBS station. Public television is wonderful for kids, especially the young ones. Shows like Curious George, Sesame Street, and Dinosaur Train got Saoirse through the roughest of days. They made her smile, and allowed us to sit down. Without Public Television, we would have been stuck searching for options. So donate to the station that your local children's hospital tunes in to every day. Even better, try to direct your funding to the kid's programing budget (some stations have memberships that are specifically kid targeted, but check with your station).
So help keep "Emmo" on TV for Saoirse, and for all the kids who need to smile each day.
#8 - Nurses. The people who (next to parents) spend the most time with young cancer patients. They work day in and day out to make sure that patients and families have everything they need. They also get the brunt of complaints, and are often yelled at, puked on, peed on, kicked, smacked, bitten, and otherwise tortured. They invest their time, emotions, and lives into their patients, and can never be thanked or appreciated enough.
So think of a way you might help those nurses who spend so much of their lives helping these kids through the horrors of treatment. Here are a couple I thought of, but please get creative - or just ask them what they need!
Buy them lunch (or dinner for the overnighters) - think healthy, fresh foods that will give them energy to continue through their 12 hour shift (fresh fruits and veggies, and things they can grab and eat on the run).
Are you a massage therapist? Offer to go in and give ten minute massages. Not a massage therapist? Send over some gift certificates for the nurses (think about getting a group of friends together and you each can "sponsor" a nurse).
Send some cards to say thank you! Patients and families try and remember to thank their nurses, but sometimes an extra thank you can help a nurse get through the day.
Get creative! (Remember, don't send flowers - the oncology floors do not allow them.)
#9 - Since today's ended up being late in the day (sorry, I was in the car all day), we will go with a simple one. The following links are ways that YOU can make a donation to childhood cancer research without even trying (or paying on two of them).
Click this link: ( http://www.causes.com/
Click this link: ( http://www.facebook.com/
Click this link: ( http://itunes.apple.com/
Thanks everyone! I know we can get everyone to do this. Think of how much money we can give just by clicking links! (If everyone who likes our facebook page did just the first two things, we could raise $34,000 without spending a dime!)
(*I know the photo seems a little random, but I don't have on of her on the computer. Watching the
iPad was the closest I could get :) )
#10 - Little kids live by example, and copy almost everything. If the majority of their time is spent at the doctors, they want to help out. During clinic and hospital stays, Saoirse's favorite "toy" was the blood pressure cuff. She was a big help in putting it on. She also liked the thermometer (and even took her own temperature once!) So for today's tip...
Donate a kid friendly doctors kit to the play rooms at the hospital and clinic (I think Fisher Price makes one). This may sound strange in a place where they can play with all the real stuff, but the real stuff is expensive, and not usually allowed to be chewed on. Plus, letting them play with the toy versions gets them familiar with the tools of the trade, and makes them less afraid when they see the real thing coming at them in a stranger's hands. (Yes, most hospitals have some toy doctor kits already, but the pieces are small, and go missing very quickly.)
Can't find a kid friendly toy kit? Find a book or two that talks about taking a trip to the doctor. I'm sure that there are some good ones out there. Look for one that talks about not being scared, and how the doctor is there to help.
Doctors' offices are scary, especially when you don't know what everything is. Anything that can make the process less scary can reduce the stress of going to the doctor. Do you have any other ideas? Share them with us!
#11 - Today's post was inspired by the memorial at St. Paul's chapel across the street from ground zero. There, people sent all sorts of well wishes to the victims, survivors, families, and volunteers after 9/11. There was a display that got my attention - thousands of tiny paper cranes strung together, folded by japanese students and sent for good luck (legend has it that if you fold 1000 origami paper cranes you will be granted a wish). When Saoirse and I were on treatment, my friends folded us 1000 paper cranes to hang in our house. We love our cranes, and loved that people wanted us to be able to get well. ( if you haven't, read Sadako and the Thousand Paper Cranes)
So today's tip is for the crafty ones (really most people can fold cranes - its a simple one). Fold cranes to send to a fighting child, or to decorate the hospital. This is a great project for school children to get involved in. Tell them what they are for and ask them to decorate the cranes. Write messages on them before you fold them. Draw artwork on the paper before folding. String them together with ribbon or fishing line. The possibilities are endless. Here's a link to how to fold a paper crane. (www.wikihow.com/
#12 - Today is inspired by my current project of cleaning out everything we don't need in our house. If you are doing a similar clean out, you may find some things that would make great donations to your local hospital or clinic. Here are some things that you might find....
Craft supplies! We all have too many of them. If you find some that you know you will never use, pack them up and bring them to the child life specialist. They will be able to use them in the play rooms and for crafts with the kids.
Books! Especially kids books. Keep those that you want for sentimental reasons, but donate those that you don't need any more. Books get used often on the oncology floors, but they have to be wiped down and disinfected after each kid uses them. This means they wear out faster.
Glider chairs! When you are no longer rocking your kids to sleep at night, you may want to get rid of your glider chair (rocking chairs may be accepted by your hospital, some don't accept rockers). Consider donating it to the hospital. You may need to recover the cushions in vinyl, or get vinyl covered ones as replacements because they will need to be able to be disinfected.
Unused electronics! Think old video games, gaming consoles, televisions, computers, iPads, DVD players, learning games (leap pad, etc), hand held games (nintendo DS, etc)...... Anything you think that a kid might want to use while in treatment (remember, teens will be there too). Kids often need things that can entertain them when they can't get out of bed or leave the floor during treatment. Check with your hospital to see what they need.
Have lots of stuff that might not be useful in the hospital but might be useful to others? Have a yard sale and donate the proceeds! Get the neighborhood involved and you can earn even more! Can't have a yard sale? Try Craigslist!
#13 - Pets are often a child's best friend. Saoirse's best friend was Fallon, our extremely patient Boxer. When she was in the hospital, she missed Fallon, and was so excited to see her when she came home.
Today's tip is to support therapy dog programs. The Ronald McDonald House in NYC has a page that describes just why these animals are so important to kids going through difficult treatments (www.rmh-newyork.org/
If you have a therapy dog, consider joining a group that makes rounds to local hospitals. Don't have a therapy dog but think it might be something you're interested in? Look for local training centers in your area.
Looking for a way that kids can have their own dog "with" them while at the hospital? Sign up to receive our newsletter (www.FitzgeraldCancerFund.o
#14 - Today's tip is a fun one, and one that brings me back to my art school days. Bright, colorful art can bring a smile to anyone's face, and I love how kids light up when they see art made just for them.
So how can you help? Sponsor a pair of Peach's Neet Feet! Madison is a wonderful artist who donates her time and talent to paint amazing, personalized shoes for kids battling for their lives. Each pair is made for that child with love, and heArt, and kids just love having their own "magic shoes" to get them through the tough days.
So go to her website - www.peachsneetfeet.com - and find out how YOU can get involved by donating shoes, sponsoring a child, becoming a shoe fairy, or buying a t-shirt! There are so many ways to help and pay it forward.
"Peach" painted a pair of Saoirse's shoes after she died so we could have them. We love them. To read about Saoirse's Magic Shoes, click here -www.peachsneetfeet.com/
#15 - Today's post is about food (again). One of the greatest things that helped us when we were going through treatment was getting meals dropped off for us to eat. (Hospital food gets boring, and it's not a home cooked meal.)
Today's tip is to make some meals for a family going through treatment. Try to put the meals in individual portions in containers that can be microwaved.
Meal Train (www.mealtrain.com) is a great way to coordinate meals for delivery from different people in your community. People can sign up for a day that works for their schedule, and put in what they will bring. Try and bring a variety of foods (check what others are bringing). If you are setting up the site, make sure to ask the family if they have any food restrictions or preferences, and where food should be dropped off.
Sometimes a home cooked meal can fix a tough day.
#16 - All kids like to color. Crayons are a mom's best friend, especially in a hospital setting. Saoirse would spend hours with the bingo markers painting everything, making herself the final piece of art.
Today's tip is not just for artists, but for anyone who likes to encourage creativity. So here are my two ideas for bringing art to kids with cancer...
If you're an artist, volunteer to paint a mural or two at the hospital and/or clinic. Murals are often painted on room windows, and are great for kids who can't leave their room. Scenes that take the kids "out" of the hospital and into a wonderful imaginary land are great (Saoirse particularly liked the ones of the giraffes in africa).
Have extra art supplies around? Like to be silly and draw crazy things? Bring the supplies to the child life specialist to donate to the kids. Create a crazy project for them, or better yet, volunteer to do art with the kids. Inspire them to draw their dreams and be creative.
Art can help in so many ways, and it's a great pick me up for kids that are stuck in hospitals and clinics during difficult treatments.
#17 - Many families battling pediatric cancer spend lots of family birthdays in the hospital. Last year we spent Mike's birthday (which is today!) in the hospital after Saoirse's surgery. The nurses do a great job making the kids feel special when it's their birthday, but they could always use a little help.
Today's tip is to sponsor a hospital birthday party! Think about things that you might find at a kid's birthday party - balloons (remember mylar only no latex), hats, streamers, treats, cards, banners, and of course cake! Call over to the hospital and see if you can sponsor a birthday bash for the kids who have birthdays coming up. You could do it for the month, or the week, or sponsor a single family. Talk to the child life specialist to find out what they think is best.
Feeling special on your birthday is something that makes a big difference when you feel so different than other kids your age. This could be really special for the teens going through treatment, as they often feel alienated and separated from their peers. Think about things that a teen might like for his/her birthday and send them over. Maybe a new video game to play, a new book to read, a canvas and some paints. Again, call and ask the child life specialist and see if they know a child who needs an extra special pick-me-up on his/her birthday.
#18 - St. Baldricks Foundation is dedicated to funding research for pediatric cancers. They are doing an amazing job, and have just teamed up with Stand Up To Cancer to form a Pediatric Dream Team!
If you want to find a creative way to donate to pediatric cancer research, consider joining a local head shaving event that benefits St. Baldrick's Foundation (www.stbaldricks.org). Hair is just hair, and it will grow back eventually. Show your solidarity with kids who go through chemo, and shave your head! (I recommend doing it in the summer, bald head = cold head!)
Saoirse's first haircut was a shave after her second round of chemo. Once it was cut, she would rub her fuzzy head and giggle. So shave your head, and remember to giggle when your rub it for Saoirse! If you would like to honor her when you are doing your fundraising, her Kid Page iswww.stbaldricks.org/kids/
#19 - Awareness is the key to getting more people involved in finding a cure for Neuroblastoma.
So yesterday's tip - SHARE! Share our story by linking to our Facebook -Fitzgerald Cancer Fund - or website - www.FitzgeraldCancerFund.o
Tell the world about Neuroblastoma - The more people looking, the faster we will find a CURE!
#20 - Balloons!!! Balloons make any day better! Saoirse used to get so excited over the balloons at the hospital. She would collect them from anywhere she could steal them from. Mostly, they had plain ones on the floor - stars, circles, moons. But the shaped and themed ones were a huge hit when they came around.
Today's tip is to send some balloons to the oncology floor / clinic! Remember that balloons have to be mylar, as most children's hospitals are latex free and won't allow latex balloons. Get the fun ones - numbers, characters, pictures, sports, fairies... the possibilities are endless. They don't have to be expensive - most dollar stores sell mylar balloons! Call up to the ward/clinic and find out how many patients they have that day and bring one for each kid (get one or two extras in case one pops or a kid comes in emergently). You may not be able to pass them out to the kids yourself, but you should be able to bring them up to the nurses station (check though, with flu season coming up, they will shut down the wards to outsiders to avoid infection).
Balloons can make the day, and they are well loved by all kids! Think about bringing some that the older kids will like too.
#21 - Hospital rooms are quite stark - white sheets, white walls, white pillows. One of the easiest and quickest ways to liven up Saoirse's room was to put up blankets and pillowcases. They were always available for the kids up on the hospital floor. It was a wonderful way to brighten up an otherwise drab room.
Today's tip is to volunteer to make quilts, blankets, or pillowcases for the oncology ward to have available for kids. One great organization is Quilts for Kids (www.quiltsforkids.org). You can visit their website for more info on working with them. Pillowcases are great too, and ConKerr Cancer is a great organization who donates pillowcases to oncology units (conkerrcancer.org). If you want directions on how to make them visit this website (conkerrcancer.org/
So make something to brighten their day, and their stay.
#22 - Today is the first day of fall, which means it's getting colder out there.
Today's tip is to make hats! Any kind of hat. Knit, crochet, fleece, cotton, beanies, brimmed hats, hats that look like kermit the frog.... Make them fun, and make them colorful. Hats are always welcome at the hospital and clinic. Little bald heads get super cold!
There are some great organizations that will take your hats too, like PatPat's Hats here on the north shore. Find one in your area, and donate a bunch. Do you have a knitting group? Get everyone involved! And if you love Pinterest, they have great free hat patterns you can find! Have fun!
#23 - Tonight, at 9pm, a special thing happens. A documentary showing the truth about childhood cancer premiers. TheTruth365 is working to spread awareness about the reality of childhood cancer. It's not just cute bald heads, and smiling faces. It's not just lonely hospital stays and lots of hand sanitizer. There is so much more that is never told, never shared, never looked at - because it's just too hard. But it needs to be told, needs to be shared, needs to be looked at - because it's just that important. The reality needs to be out there, the reality needs to be recognized by the public that doesn't live it every day. This reality will bring the awareness, which brings the funding, which funds the research, which finds the CURE! Awareness is this first step, and this film is a great and easy way to spread it.
So tonight -
To preview the film, and see the 8 Preview videos, visitwww.youtube.com/user/
(UPDATE: The release of the film was postponed until Sunday, Sept 30, 2012. Watch Then!)
#24 - Having cancer is stressful for everyone involved. Kids are usually happy go lucky, and bounce through days of chemo, but it puts a huge amount of stress on their bodies. Combine that with stressed parents, friends, doctors and nurses, the tension can become overwhelming even for the littlest fighters.
Alternative therapies can help relieve some of that stress. Therapies like acupuncture, acupressure, massage and reiki all help alleviate stress on the body, as well as other treatment side effects, and are almost always safe to receive during treatments. Here in New England there is an organization called Lucy's Love Bus. This non-profit organization helps pediatric cancer patients receive these integrative therapies, as well as educate the medical community about how these therapies can help their patients. Visit their website, www.lucyslovebus.org to learn more and to donate to their programs.
Many children's hospitals are also beginning to develop outpatient clinics that offer alternative therapies. Check with your local hospital and see if you can donate directly to that program.
Many nurses also learn to practice Reiki so that they can better ease the stress of their patients. Many of Saoirse's nurses would do reiki with her to help her settle down for bed. It was so great. She always slept better after as well. So support alternative therapy programs in your area, and help to alleviate the stress on patients and families.
#25 - Grandparents and extended family are a huge part of the support system of a child who is battling cancer. Not only can they help with the day to day care and challenges, but they also are a huge part of the emotional support for the parents. They also spend a lot of their own money and time helping out at home and at the hospital.
So today's tip is to help the Grandparents and extended family out! Send them a card, a gift certificate for a massage, meals, new slippers for staying at the hospital... be creative!
Another way to help here in the Boston area is to donate to the Alexander The Great Fund for Family Support in Pediatric Oncology/Hematology at Tufts Medical Center Floating Hospital For Children (www.tuftsmedicalcenter.org
#26 - Today is all about helping families when they are far from home for treatment. Families need a safe place to go when they are out of their home environment - one that's free of germs, and caters to the special needs of kids going through chemotherapy and radiation.
The Ronald McDonald House Charities provide housing close to many major hospitals, and cater to kids with compromised immune systems. We were lucky to be able to stay at the RMH in New York while we were at Sloan Kettering. They are so warm and loving there, and they really made our stay easier than it could have been. They do so much for the families fighting with their children.
So make a donation to Ronald McDonald House Charities (RMHC). They have many ideas for what to donate, as it doesn't have to be money. There are always different needs at different houses, so check with your local chapter and find out what they need most. (We even dropped off a few grocery bags of food for the families once). They are an organization that truly puts the kids first.
#27 - As Childhood Cancer Awareness month will soon be over, we all need to make sure that the conversation doesn't end. The best way to bring up childhood cancer to a complete stranger? Wearing items that someone would ask you about! Wristbands, pendants, t-shirts, bracelets and gold ribbons can all be the beginning of a conversation about awareness, compassion, and strength!
So grab a ribbon, put on a wristband, throw on a t-shirt and start a conversation! We have some items for sale in our online shop -www.FitzgeraldCancerFund.o
Some places you might find items: The Sierra Rayn Foundation, Gold: The New Pink, The Ronan Thompson Foundation (look on the Rockstar Ronanblog for merchandise). (If you want your site added, comment below and I'll add you!)
#28 - Today's post will help families to create lasting memories. Parents who loose their child only have photos and videos to look back on to help them remember. So to them, those photos are precious and important. Even families who's child survives wants to remember smiles more than the tears, and photos are a great way to do just that.
Today's tip has two options. The first is for photographers. Become a photographer for the Tiny Sparrow Foundation or Flashes of Hope. These groups of volunteer photographers offer photo sessions to families dealing with childhood cancer. They create wonderful memories for those families, and pieces of art that they will treasure forever. If you could lend your skills and talents to helping a family remember their child's smiles forever, please consider joining with them.
Not a photographer? Donate to these organizations! Flashes of Hope even goes to the hospital to photograph the kids that don't get to leave their rooms. These family photographs mean so much to the families and can truly be the art that keeps their child alive for them forever. Also, if you know of a family who's child is fighting cancer, suggest a photo session to them. Try and coordinate with them. With so much going on, it's hard to think about pictures. We never got around to it, and I always wish we had.
#29 - This is the second to last day of Childhood Cancer Awareness Month. Tomorrow is the release of the film TheTruth365. Today's task? Alert the MEDIA!
Let's get this out there. Let's keep the awareness going and build our audience. Lets share this with everyone we can think of and share the stories of the kids and families that have been devastated by childhood cancer.
Share our story at the same time and lets start getting some force behind us moving toward an end to Neuroblastoma and a real life for these kids after treatment!
So call your local station, write a letter, text their tip line, post to their Facebook page, twitter them all day! We can do it. There are 5,673 people who like this page. Let's Flood the Media!
#30 - Today is the last day of September. As Childhood Cancer Awareness month comes to a close, I am remanded of the reality that my, and so many other, families live through every day. Not just the ones who have lost a child like us, but also the ones who live in fear of relapse every moment of every day.
We never asked to be part of this club. We never get to look away again. We can never forget what we have seen and experienced. We will never get a day off from the reality of living through it.
This is my reality. I carry around the ashes of my daughter in a pendant around my neck. I take pictures of her like she is with me; like she is seeing all the places I take her. But the reality is that she is not there. She will not see those places. She will never be able to tell me what she thought of them, or if she would like to go back.
Help to bring this to an end. Donate, Volunteer, Become a Doctor or Nurse, Become a Researcher, Share your Skills. Help find a CURE and bring an end to this childhood thief called Pediatric Cancer. Don't turn away - don't let others turn away.
(If you want to see more photos of where Saoirse has "been" visitwww.thependantproject.blog
We never asked to be part of this club. We never get to look away again. We can never forget what we have seen and experienced. We will never get a day off from the reality of living through it.
This is my reality. I carry around the ashes of my daughter in a pendant around my neck. I take pictures of her like she is with me; like she is seeing all the places I take her. But the reality is that she is not there. She will not see those places. She will never be able to tell me what she thought of them, or if she would like to go back.
Help to bring this to an end. Donate, Volunteer, Become a Doctor or Nurse, Become a Researcher, Share your Skills. Help find a CURE and bring an end to this childhood thief called Pediatric Cancer. Don't turn away - don't let others turn away.
(If you want to see more photos of where Saoirse has "been" visitwww.thependantproject.blog
Sometimes it's the little things that make the BIGGEST impact!
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