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.

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.  

Giving Tuesday!

It's Giving Tuesday! In the wake of Black Friday and Cyber Monday, today is a day to give back to the community and remember what this season is truly about - GIVING! 

So choose your favorite charity or cause and donate a little or a lot or just your time. 

The Fitzgerald Cancer Fund is taking the funds collected today and using them to purchase gas gift cards for families with a child in treatment for neuroblastoma. Last year we raised $500, let's see if we can beat that this year! 

Thanks to everyone who has donated so far, and to those who will continue to donate. 

Donate Here

Another way to donate to kids with neuroblastoma is to take part in our 2nd Annual Arts and Artifacts Online Auction. There are some great items that you can purchase for your holiday gifts, and you can help the Fitzgerald Cancer Fund at the same time. Two birds with one stone! 

www.32auctions.com/ArtsAndArtifacts

Thanks Everyone!

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. 

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. 

Traveling.....

Lochlan is now two months old. The first month of his life we spent cuddling, and getting used to having a baby in the house again. The second month was spent on a whirl wind tour of the north eastern US - traveling by car to see family, friends, and mostly work. Lochlan, in his first two months, has seen states that I never had, and met more people than most two month olds could even expect to encounter. 

Firstly we took a 'test' trip to Virginia. My friends who I grew up with were all getting together for a little reunion (we all turn 30 starting this year - I'm the 'baby' so I turn 30 next July). All but two of our close knit group could make it, so I was determined to get down there to see everyone. (PS: we are not from VA, but Angela hosted and that's where she lives now.) Stopping in NYC to drop off the dog and break up the driving, we managed to get to Richmond in one piece, with not too much protesting from Lochlan (who hates the car). A whirlwind long weekend, we headed back home where we stayed just 5 days before leaving for our next excursion.

We started driving to Chicago - a 16 to 18 hour drive when we used to drive straight through, but with the baby (and in reality even the last couple trips out), we stop in Erie, PA for the night to break it up. Our wonderful friends, Paul and Katie, host us when we come - which makes a big difference when you are going to be on the road for so long (a kitchen and good friends always make a trip better). During our 7 days in the Chicagoland area, we had more than 7 families and friends to try and see. We managed to "cram" everyone in, and it felt like we spent most of the time in the car going from one place to another - double booking more times than I would like to admit. I am determined not to cram so much into so little time next time we are out there. 

From there we stopped for a meeting with a potential sales rep in Indiana. We stayed the night and headed down to Louisville, KY to the APHON conference. This is a conference we have been looking forward to for over a year. We missed last year's by just a few weeks, and this was the first on our list for ones we had to make in 2013 (and we will be going in 2014 for sure!). This was a great conference. Short, just 2 exhibit days, it is and intense show. We seemed to be quite a popular booth, and found so many nurses wanting more information to bring to their hospitals. As an added bonus, we saw a few of Saoirse's nurses from Children's and they were excited to meet Lochlan. He was a hit of the show, and (when he wasn't sleeping) flirted with all the nurses. 

From there we headed down to Nashville and a meeting with a distributor who is interested in our products. The first day Mike went to the AVA conference as a day guest, and spoke to a few people there. We had considered doing that show, but it was quite expensive, and we weren't sure if it would be worth it. I think the day pass was the right choice for this trip. We wandered around Nashville some, which was quite a trip (we saw someone almost get run over, and then pull a spoiler off a car, and we saw about ten thousand teen and tween girls wandering around before the Taylor Swift concert!). We decided to escape the main strip crazies, and headed up to find an art gallery. We found a great one - and we bought a painting! I love finding art when we travel and this one has a great story - it is from a group of paintings that are done by people in a community program for the disabled. They are mostly in wheelchairs, and have limited use of their hands. They paint either with their mouth, or they give signals to another person to where they want the paint and colors to go on the canvas. When you purchase the paintings, the money goes back to the program so they can continue to create! I love that the gallery is giving back to these people and helping them express themselves through art (this gallery also coordinates a program for local kids to do art after school when they might otherwise be left alone at home or out on the streets). 

After Nashville, we went back to Kentucky, this time to Lexington. We did an inservice at the University of Kentucky Children's hospital. One of the nurse managers had met us at APHON, and she wanted us to present our products to her staff. It was great to be able to go in and present the products and show how much they will be able to help the patients. 

From Kentucky, our goal was to get back to NYC for a few days. It's a long drive, so we decided to crash for the night back in Richmond. My friends were shocked at how big Lochlan had gotten in just 4 weeks. (He's growing like a weed!) Then we went up to NYC and tried to relax a little. Staying with friends always helps - especially when it means we get a home cooked meal after too much eating out. 

The driving took its toll on all of us. By the time we got to NYC, Lochlan was so off in sleeping, it took hours to get him to sleep at night. We managed to get him to nap during the day most of the time, but just short ones (which is a current trend even at home now because of all the "rocking" in the car). We were sick of the cramped quarters too, and were ready to get home. 

Once we got home, we weren't here for long. We had to make two trips right away - one to Vermont to meet a potential distributor, and one to Pittsburgh to do a children's hospital presentation. So more driving and more cramped quarters and interrupted sleeping. But now, hopefully (knock on all kinds of wood!) we will be home for a while and can just be settled (and stretched out). 

Things are moving like crazy - I have 3 events I'm trying to plan for the foundation, and things keep getting pushed off some, but we are making some headway. Now all I need is to find a few more board members and a grant writer, and maybe a free personal assistant (never hurts to wish). 

"Things I do now...."

teething (yup, for real - yes he's really young!)

sitting up in the corner of the couch

chewing on my hands when I can get them

grabbing toys

watching mommy do laundry

babbling stories

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. 

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! 

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/causes/789392-powering-the-possible/actions/1672930?recruiter_id=156254501&utm_campaign=invite&utm_medium=wall&utm_source=fb ) and watch a 2 minute video. Once you have watched it, a dollar will be donated to the NMTRC, where Dr. Giselle Sholler and her team are working on novel treatments for Neuroblastoma. I'm sure we can all find 2 minutes (hey, we're all on facebok!)

Click this link: ( http://www.facebook.com/WaterStoneBank ) and "Like" WaterStone Bank's facebook page. For every new "Like" they get in the month of September, they will donate $5 (!) to the I Back Jack Foundation. (Jack battled Neuroblastoma and his family started the foundation to help find a cure for NB.) This one takes literally no time. Two clicks. Done. Easy as pie!

Click this link: ( http://itunes.apple.com/us/album/ronan-single/id560227510 ) and buy Taylor Swift's new single - "Ronan" - on iTunes. It's just $1.29, and the proceeds are going to pediatric cancer research! (Plus, it's just a wonderful song, inspired by and written using Maya Thompson's (Ronan's mum) words!) Many of you know the Ronan Thompson Foundation, and the amazing blog that Maya writes showing her true, often unfiltered, thoughts about NB and the toll it takes. Love you Maya! So if you don't download music, I understand (I don't do it often). So instead, share this link with someone you know who does. It's a step in the right direction, and brings awareness!

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/Fold-a-Paper-Crane)

#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/therapy-dogs). Call your local hospital and ask which group they use, then contact them to make a donation.

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.org) and be the first to hear about an amazing collaboration coming up between the FCF and another great organization this winter!

 

#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/theirstory/159-saoirse - and read other kids' stories as well.

 

#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/mypage/4652 . Saoirse's 15 year old cousin, Alyssa, shaved her head this past June, on Saoirse's birthday, and raised $600 for St Baldrick's! If she can do it, so can you!

 

#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.org . Share other kids' stories, share that September is Childhood Cancer Awareness Month, share gold ribbons, share Peach's Neet Feet, The Ronan Thompson Foundation, The Sierra Rayn Foundation, Gold: The New Pink,Cure Me I'm Irish, Melina's White Light, Because of Ezra, I BACK JACK FOUNDATION, Crazy About Fighting Kids Cancer.....

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/pillowdirections.html) and then look for a drop off location here (conkerrcancer.org/regional-directory/). Fleece blankets are great too. I'm not sure if there is an organization that coordinates those, but they are super easy to make. Just two pieces of fleece the same size, cut strips along the outside edge, and knot them together. (if you know a group who does these, please let me know and i'll post it). They are great as they are super warm and they are really snuggly (that's a technical term).

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/thetruth365film
(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/Giving/SpecialGivingOpportunities). This fund was set up by NB Angel Alexander Whipple's Grandmother to support extended family members who want to be able to help as much as they can. Consider donating to this fund to help out as well.

#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.org/shop.html - we have t-shirts and euro bracelets in the shop now, and soon we will have wristbands. Check out some other childhood cancer organizations and their shops for some different items. You might find car magnets and decals, necklaces, lots of wristbands, and all kinds of t-shirts. Sharing the stories of kids who are fighting for their lives helps to bring others into the conversation. And we all know the formula - awareness = funding = research = CURE!

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.blogspot.com )

Sometimes it's the little things that make the BIGGEST impact!