Happy Fourth Birthday Saoirse - I hope you are dancing today and every day.
Showing posts with label Saoirse. Show all posts
Showing posts with label Saoirse. Show all posts
Sunday, June 1, 2014
Four....
Four year olds have dance recitals. Saoirse would have loved being in a dance recital.
Happy Fourth Birthday Saoirse - I hope you are dancing today and every day.
Happy Fourth Birthday Saoirse - I hope you are dancing today and every day.
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.
Tuesday, December 31, 2013
The holiday blur, and a new year
This year's holiday season has been a bit of a blur. Between time spent with Lochlan, and event planning, and distribution contracts, and family get togethers, I feel as if I've been sinking into an ever deeper hole of avoidance and anger.
It was all I could to muster up enough energy to shop for gifts. I just didn't feel like being "merry and bright" and the stores always seem to be filled with frustrated, hurried shoppers hoping to get everything done before dinner. Everything seemed forced somehow this year. Things seemed to pile up and get left for last minute. Nothing seemed to fall into place easily, if at all. It all was a blur and a chaos that just seemed to happen.
The approach of the new year hasn't been any better. I remember last year - we were in Chicago for new years eve. Mike's friend owns a restaurant which was hosting a party, so we decided to go out and stay with friends for a while so we could go. I remember we got in the car to drive from the suburbs into the city - as we drove, I started to cry. I couldn't bear the thought of entering into a new year without Saoirse. Every change of the year means ever more time since I saw her smile, heard her laugh, held her close.
This year I kind of forgot it was a holiday. I've been going about business as usual today. Planned on going to bed early, and hopefully having the baby sleep soundly. Then I realized that the rest of the world was staying up to party and welcome a new year. I kind of wanted to just stop time for a bit. 2014 seems to have so many expectations coming with it. I don't know if it's the events coming up for the foundation, or the beginning of distribution for the products - but I feel as if I'm never going to meet the expectations I have for myself this year, let alone the ones of others.
I feel stalled. A new year should bring new beginnings, clean slates, new hopes and dreams. This year for me, it brings fear of failure, feeling overwhelmed, and another year without Saoirse. I wish I could stop time and take a breath and just be - with no expectations and no agenda. Just Be. But somehow the world doesn't stop turning, and time does't stop ticking. And we all must keep moving.
It was all I could to muster up enough energy to shop for gifts. I just didn't feel like being "merry and bright" and the stores always seem to be filled with frustrated, hurried shoppers hoping to get everything done before dinner. Everything seemed forced somehow this year. Things seemed to pile up and get left for last minute. Nothing seemed to fall into place easily, if at all. It all was a blur and a chaos that just seemed to happen.
The approach of the new year hasn't been any better. I remember last year - we were in Chicago for new years eve. Mike's friend owns a restaurant which was hosting a party, so we decided to go out and stay with friends for a while so we could go. I remember we got in the car to drive from the suburbs into the city - as we drove, I started to cry. I couldn't bear the thought of entering into a new year without Saoirse. Every change of the year means ever more time since I saw her smile, heard her laugh, held her close.
This year I kind of forgot it was a holiday. I've been going about business as usual today. Planned on going to bed early, and hopefully having the baby sleep soundly. Then I realized that the rest of the world was staying up to party and welcome a new year. I kind of wanted to just stop time for a bit. 2014 seems to have so many expectations coming with it. I don't know if it's the events coming up for the foundation, or the beginning of distribution for the products - but I feel as if I'm never going to meet the expectations I have for myself this year, let alone the ones of others.
I feel stalled. A new year should bring new beginnings, clean slates, new hopes and dreams. This year for me, it brings fear of failure, feeling overwhelmed, and another year without Saoirse. I wish I could stop time and take a breath and just be - with no expectations and no agenda. Just Be. But somehow the world doesn't stop turning, and time does't stop ticking. And we all must keep moving.
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.
Tuesday, December 10, 2013
Shopping for Saoirse
Last week, my friend Vicky called me up. She left me a message saying she wanted to talk to me about something interesting that happened at work that day. I would have never guessed what was coming next.
Where Vicky works, they have giving trees - trees that have tags with the names of children who are in need of some holiday cheer, and a note about what they would like for a gift. Vicky was putting some new tags on a tree and she stopped to read the names. There was on that grabbed her attention - a 2 year old girl named Saoirse. She stopped, took a moment, and took the tag to get Saoirse a gift herself. She called me because she wanted to know if I would like to go with her to pick out the gift. I was so glad that she called me.
While for some grieving parents, this would be too hard, I was really excited. It's sort of a little way I could experience a Christmas for Saoirse. We picked out some nice things for her, and I made sure to get a little Elmo doll in there. I felt like it was my Saoirse's way of reminding me that she is here, and that this time of year is all about giving.
So today, I picked up my own giving tree tag. This one will go to a little girl at the Jimmy Fund - she wants an arts and craft set - I will be sure to pick out something very fun (and of course, throw a little Elmo in there for good measure). Remember to think of those kids who don't get to be home for Christmas and the holidays, and if you see a giving tree, take a moment to pick out a tag and add one more small gift to your list. It only takes a moment, but the memory for that child will last a lifetime.
Where Vicky works, they have giving trees - trees that have tags with the names of children who are in need of some holiday cheer, and a note about what they would like for a gift. Vicky was putting some new tags on a tree and she stopped to read the names. There was on that grabbed her attention - a 2 year old girl named Saoirse. She stopped, took a moment, and took the tag to get Saoirse a gift herself. She called me because she wanted to know if I would like to go with her to pick out the gift. I was so glad that she called me.
While for some grieving parents, this would be too hard, I was really excited. It's sort of a little way I could experience a Christmas for Saoirse. We picked out some nice things for her, and I made sure to get a little Elmo doll in there. I felt like it was my Saoirse's way of reminding me that she is here, and that this time of year is all about giving.
So today, I picked up my own giving tree tag. This one will go to a little girl at the Jimmy Fund - she wants an arts and craft set - I will be sure to pick out something very fun (and of course, throw a little Elmo in there for good measure). Remember to think of those kids who don't get to be home for Christmas and the holidays, and if you see a giving tree, take a moment to pick out a tag and add one more small gift to your list. It only takes a moment, but the memory for that child will last a lifetime.
Friday, November 22, 2013
Growing Up
I find myself questioning why it is that we are always so eager to see our babies grow up. To do the next thing, to learn the next skill, to gain the next pound. It seems like there is always a milestone waiting in the distance to be achieved, and when it is, there is another.
As I have wrestled these past few days with trying to get my baby to sleep without me holding him - and desperately trying to break the swaddle - I began to think and wonder why I'm working so hard to push him to that next stage.
As each day passes he gets heavier and heavier. Holding him all swaddled up and straight is a strain on my back, and he just seems to scream and scream until he finally falls asleep, only to be jarred awake when I put him down. I try so hard to get him to nap so I can get something done - work on event planning, proof read a contract, design a poster, update a website. Running a business and a foundation and being a full time mom is more jobs than one person really can do in 24 hours a day.
But as I sit here, thinking about night wakings and schedules, errands and meetings, I start to think about how I said I would just put him in the carrier and go about my business. And I think about those days that I did just that and how much happier he had been, and how much better he had slept, and how he barely even fussed. Why am I fighting something that so obviously he needs - just to be with me.
He just needs me.
We are so focused on the next - we need to be focused on the now.
It all brings me back to Saoirse. Now, she was a champion sleeper - through the night at 10 weeks, 12-13 hours a night at 4 months. She took naps when she was supposed to, she slept without being swaddled, she fell asleep on her own. But then there was the hospital - and then coming home from the hospital, and crying in her crib and me not wanting to rush to her side because I wanted her to learn to fall asleep on her own again. And now, all I think of now is how I would give anything to have her crying for me to come snuggle her to sleep, to tell her that everything is ok, and to stroke her head and sing to her.
And I have the chance to be that for Lochlan. To just hold him, and snuggle him, and stroke his head and sing to him. It's hard to remember that there is no going back to that - there is no rewind when he is 15 and never wants me in his room. That this time when he needs me for everything is so fleeting and so precious, and should be cherished and enjoyed.
Tomorrow he will be with me. Tomorrow I will just think about the moments, and not about the tomorrows.
As I have wrestled these past few days with trying to get my baby to sleep without me holding him - and desperately trying to break the swaddle - I began to think and wonder why I'm working so hard to push him to that next stage.
As each day passes he gets heavier and heavier. Holding him all swaddled up and straight is a strain on my back, and he just seems to scream and scream until he finally falls asleep, only to be jarred awake when I put him down. I try so hard to get him to nap so I can get something done - work on event planning, proof read a contract, design a poster, update a website. Running a business and a foundation and being a full time mom is more jobs than one person really can do in 24 hours a day.
But as I sit here, thinking about night wakings and schedules, errands and meetings, I start to think about how I said I would just put him in the carrier and go about my business. And I think about those days that I did just that and how much happier he had been, and how much better he had slept, and how he barely even fussed. Why am I fighting something that so obviously he needs - just to be with me.
He just needs me.
We are so focused on the next - we need to be focused on the now.
It all brings me back to Saoirse. Now, she was a champion sleeper - through the night at 10 weeks, 12-13 hours a night at 4 months. She took naps when she was supposed to, she slept without being swaddled, she fell asleep on her own. But then there was the hospital - and then coming home from the hospital, and crying in her crib and me not wanting to rush to her side because I wanted her to learn to fall asleep on her own again. And now, all I think of now is how I would give anything to have her crying for me to come snuggle her to sleep, to tell her that everything is ok, and to stroke her head and sing to her.
And I have the chance to be that for Lochlan. To just hold him, and snuggle him, and stroke his head and sing to him. It's hard to remember that there is no going back to that - there is no rewind when he is 15 and never wants me in his room. That this time when he needs me for everything is so fleeting and so precious, and should be cherished and enjoyed.
Tomorrow he will be with me. Tomorrow I will just think about the moments, and not about the tomorrows.
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.
Wednesday, June 26, 2013
The invisible line....
Today we passed over the invisible line.
Saoirse was alive for one year, six months and 13 days - 560 days.
Yesterday was one year, six months and 13 days since she died - 560 days.
Today is day 561 - day 1 in the ever increasing number of days that she has been gone longer than she was here.
Saoirse was alive for one year, six months and 13 days - 560 days.
Yesterday was one year, six months and 13 days since she died - 560 days.
Today is day 561 - day 1 in the ever increasing number of days that she has been gone longer than she was here.
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.
Wednesday, February 13, 2013
Little kicks....
Finally starting to feel the baby move. This is the strangest part of pregnancy for me. It's when it sort of gets real, but no one else can be part of it. Also, its hard to know what's baby and what's gas sometimes. When I went to my 16 week appointment on Monday, I couldn't really tell if it was the baby yet. Strangely, that afternoon, I really started feeling the baby wiggling. I kind of needed it, as I've still been having a tough time connecting with being pregnant. There are so many mixed emotions with this pregnancy, and it's been hard to get excited.
When we got pregnant with Saoirse, we were so excited. Reading all the books, doing all the preparations, getting the nursery ready, planning our new family... there was so much to do, and everything was new and exciting. This time, there is less to do to prepare. I don't need to read as many books, the nursery is already together, and Saoirse's not here to share it all with. I think as we go along, and the baby gets bigger and pushier, the excitement will build some, and I know I will love the baby when it arrives. I guess the good thing about pregnancy lasting 9 months is that we have time to work through all our emotions.
When we got pregnant with Saoirse, we were so excited. Reading all the books, doing all the preparations, getting the nursery ready, planning our new family... there was so much to do, and everything was new and exciting. This time, there is less to do to prepare. I don't need to read as many books, the nursery is already together, and Saoirse's not here to share it all with. I think as we go along, and the baby gets bigger and pushier, the excitement will build some, and I know I will love the baby when it arrives. I guess the good thing about pregnancy lasting 9 months is that we have time to work through all our emotions.
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.
Saturday, January 26, 2013
New Ventures
We started shipping! CareAline Products have started shipping out to nurses and patients. I have been working on tweaking the website (as Mike did most of the building and has spend countless frustrating hours getting everything working), and trying to make it as easy to use as possible. Hopefully hospitals will see the benefit to supplying them to their patients. We know how much they helped with Saoirse's lines, and so we can't wait for more people to have access to them for their child's or their own lines. If you haven't seen CareAline Sleeves for PICC lines and CareAline Wraps for Central Lines check our our website!
Thursday, January 3, 2013
What to Expect.... the Unexpected
I was asked to write a guest post for the Word of Mom page on the What to Expect website! I would love it if you would all read and share it with your friends. Take a look by clicking HERE. Let me know what you think! I hope to write more for them this year, and share Saoirse and Neuroblastoma with the world!
Thanks Everyone!
Thanks Everyone!
Thursday, December 13, 2012
One Year
I can't believe it's been one whole year since I've held Saoirse. There are so many times I feel like it was just yesterday, and times when I wonder if she was just a dream. I miss her every single day, and I always wish she was here with us. She would have made life so much happier. So much better. So much friendlier. So much laughier. I just don't know why she was taken. She was so good and kind and perfect. She could have done so much with her life. Helped so many people. Made so many friends. I wish I could go back and fix everything. I just wish she could come home.
We decorated her tree today. Put lights and a garland up for her. I think she'll like it.
Thursday, December 6, 2012
Calling All ........... well just ALL!
The first annual Arts and Artifacts Auction is here! It started on Tuesday (sorry, I'm late with this post on here), and goes through Saturday December 8th (until 11:45pm eastern time). This is a great opportunity to give back while doing some holiday shopping this year. There is something for everyone, so take a look, set up your account, and START BIDDING! And remember - we are a 501c3 public charity, so all of your donations will be tax deductible! All items were generously donated to us, so 100% of the proceeds will be going toward our Parent Grant Program, which financially helps families with a child battling Neuroblastoma. Our goal is to raise $5000 - which would help so many families in 2013! Let's make this goal a reality! Share with your friends, and start bidding!
Here are the links to the info on our website, as well as the direct link to the online auction! Happy Bidding!
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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