Brody’s Story

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This beautiful little boy is my neighbor’s nephew. Brody has cancer.That picture was taken in the hospital when he was receiving treatment.

Doesn’t that smile just melt your heart?

You can see his strong spirit shining through, no doubt giving his family the strength they need to get through each day. Can you even fathom it? I can’t even comprehend.

But here are the facts:

* 1 in 300 kids will be diagnosed with cancer before age 20.
* Each year cancer kills more children and adolescents than any other disease.
* The incidence of cancer amongst children in the US is rising almost 1% a year.
* Only 10% of the money budgeted by the National Cancer Institute is directed to pediatric cancer research.

Money is desperately needed for research to find causes, better treatments, and a CURE for pediatric cancer. No child, no family should have to endure this diagnosis. 

In one week, on May 6th, Team Tiny Orangeswill be in Irvine participating in the Pediatric Cancer Research Foundation Run/Walk to raise money to support pediatric cancer research.

I hope you might be moved today to want to do something to help – you can click HERE to make a donation of any amount on my fundraising page. Or click HERE to make a General Team Donation. Even donations of $5 or $10 will add up. I urge you to take two minutes right now to make a quick donation. You will be making a difference in a child’s life.

Why I support PCRF:

* The cancer death rate has dropped more dramatically for children than for any other age group.
* This is attributed solely to research.
* 80% of all funds raised by PCRF goes directly to research.

Now those are just statistics, but behind those statistics are babies, children, and teenagers and their families fighting this disease. Children like Brody.

My neighbor was kind enough to let me share Brody’s story with you. I think it is such an inspiring story about strength and intuition and hope. Here is what she wrote…

This story began around October.

My nephew Brody started having what we thought were reflux issues at 7 months.  My mother (Grandma) felt that this was an odd time to start having trouble keeping food down but there is so much reflux going on, it got lost in the reflux shuffle at the pediatrician’s office.  He also had torticollis around the same age or earlier.  So his head/neck tilted slightly to one side.

Brody is the first and only child of my sister and her husband.   Grandma attended each Doctor’s appointment and kept trying to tell the pediatrician that something didn’t seem right (she is a mother of 4).

We traveled as an extended family to Hawaii over the holidays.   Brody had an appointment scheduled for early January to see a gastro specialist.  During our vacation, Brody threw up much of what he took in which was mostly formula and baby food.  It was progressively worse as the two week vacation progressed.  Brody had lost weight and was clearly not feeling well some of the time but his energy and spirit are so amazing that he kept us from worrying too much.

In early January, Brody saw the gastro specialist who prescribed a special medicine to help keep the food down.  This did not work.  A few days later, my brother in law decided to stay home from work with Brody and ended up taking him to the ER that afternoon.  He was transferred to CHOC.  They ran all kinds of tests and kept him overnight.  All gastro tests came back negative.

By the following day, Friday, January 13th, they decided to do an MRI of his brain.    My sister and her husband were both at the hospital.  My mother and I instinctively decided we should also drive to the hospital.  Within minutes of our arrival, we were all escorted into a conference room with a ton of doctors (including medical school students) and a social worker and we were told that Brody had a 2 inch by 2 inch tumor on his brain stem.

I will never forget that day.

Nothing can prepare you for that kind of shock.  There are no words to adequately describe the feeling.  Kind of like you are floating.  I had recently become a big Grey’s Anatomy fan and I had this surreal feeling that I was somehow a part of a TV episode.  This was not about our family.  This was not about our Brody.  This was not possible.

We knew that this was very serious when Brody was immediately scheduled for surgery 3 days later.  We met with a topnotch CHOC neurosurgeon who kept telling us how very very serious this was and how tough it would be to get all of the tumor.  The barrage of medical information was overwhelming.  Was it malignant or benign?  Was it definitely cancer?

It was so frightening.

Life stopped.

Time moved in slow motion.

My brother in law and I met with the neurosurgeon who told us all of the things that could go wrong during surgery.  It was like he was preparing himself for battle (the surgery) and we were witnesses to his private thoughts.  I was amazed by how much frightening detail he shared.  He scared us to death.  He was not very positive about the possible outcomes.

That doctor would eventually become our hero. 

On Monday, he successfully removed 99.9% of Brody’s tumor – all that could be seen by the human eye.  He gave us a thumbs up after the surgery.  That was one of the longest days of my life (our lives).  There was many of us gathered in the waiting room trying to keep our thoughts positive but we were petrified.

Then the real waiting began. 

A sample had been sent to topnotch hospitals to analyze the tumor.  While we focused on Brody’s healing (which was amazing to watch – how quickly children can heal and bounce back), we researched and researched and wrote to everyone we knew trying to get thoughts and feedback and ideas of where to go to treat whatever Brody had.  The results of the biopsy were taking too long.  We began to be concerned by this.

We finally received the terrible news that Brody had AT/RT, a brain cancer that affects about 30 kids per year.  The odds of this result were astronomical.   We didn’t know what had hit us.  We had been researching the spectrum of brain tumors in terms of seriousness and prognosis, etc.  This was the worst possible outcome.

By some miracle, we learned about a doctor at Children’s Hospital Los Angeles who specializes in brain tumors with AT/RT as the basis of 20 plus years of research.  We met the doctor, fell in love with him and his positive outlook on life, and Brody was at CHLA within days.

My sister, brother in law and Brody have basically lived in hospitals since January 13th.  Brody is much loved on the 4th floor of CHLA.  The  nurses come in to visit just to see him smile and wave.  Brody has been amazing.  He has been poked and prodded and poisoned with chemo yet every day he graces us with smiles and claps and laughter.  It has been amazing to see him bringing us strength.

Brody is receiving his 4th round of chemo.  This doctor does not believe in radiation at this young age, so my sister and brother in law will soon be faced with a very very serious decision.  Do you expose this young child to radiation to kill this monstrous cancer and hopefully save his life yet possibly leave him with long term issues/disabilities/consequences from the radiation?  This will be a tough tough decision. Would love any feedback/experiences from your readers.

There are so many more details between the lines of this story –  about the many different ways that each person grieves and handles crisis and tragedy, about family and friends and community pulling together and how much strength is garnered from that, and of course, about the importance of research for pediatric cancer!!

There are friends who don’t know what to do with my news.  They don’t know what to say.  They have no concept of what we are experiencing.  They know only their daily lives.   There are others who are right there for us and incredibly supportive.  It is amazing to observe.  It is like the discomfort that some people feel about dealing with or talking about death.

I understand.

Before this, this kind of story was not ours.  It was the story of a neighbor or a friend of a friend of a friend.  I always felt very sad when I heard these stories and counted my blessings that we were all healthy.

But now, it IS our story and pediatric cancer is a big part of our lives.

Research shows that there is historically only about a 10% survival rate for AT/RT.  We feel so strongly that Brody will fight this fight and make it……  There is just something incredibly special about him.  So far, he is doing incredibly well and the doctors are very very encouraged but of course, no one really knows what will happen.  I guess God knows.  So, we can only put our faith in Him and in Brody and in our amazing doctor.”

Team Brody will be out with us at the event on May 6th.  Please click HERE to make a donation of any amount to Team Brody. Team Tiny Oranges will be there to support your family!! And we will have your family in our thoughts and prayers.

 

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Gavin’s Story

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I started Team Tiny Oranges last year because I wanted to do a charity project through my blog.

I knew I wanted it to benefit a charity that helped children, so when I heard about the Pediatric Cancer Research Foundation’s (PCRF) annual Cinco de Mayo Run / Walk event which happened shortly after I posted this guest blog from a mommy reader who was a pediatric cancer survivor looking to raise awareness, I knew this was the cause I wanted to support.

I wanted the opportunity today to share the story of a mom I met last year through PCRF, Kim, and her son, Gavin.

When you are not personally affected by pediatric cancer, those words are just that, words. But what I learned through doing our team, is that behind the words, “pediatric cancer” there are countless stories of families facing this horrendous disease. Families that need our help. 

If you are inspired today to do something to help fight for Gavin and all the families like Gavin’s who face the unfathomable, please join us on Team Tiny Oranges 2012!  Click here for info on how to join our team. There is no minimum fundraising, and you DON’T have to run a half marathon! There is a 1K, 5K, 10K and half, an event for everyone.

May Gavin’s story also be a reminder, that even on your most challenging, craziest of days, to have healthy kids is a blessing beyond measure.

You can read their amazing story in more detail in her book she published last year, Hope Room. It gave my life an entirely new perspective.

Gavin’s Story

“In 2009, I was the happy mother of an infant daughter, Mia, and a 4 year-old son, Gavin. My husband and I were enjoying watching our healthy, happy family grow. We had a great summer enjoying Mia’s first year and Gavin’s first real swim lessons.

Gavin started preschool that fall, and suddenly was getting sick all the time. We, along with everybody else, chalked up his fevers and recurrent ear infections to his body being exposed and getting used to all the germs in preschool. Fall turned to winter and when Christmas finally came, Gavin was too miserable to come out of his room. We saw the ENT right after the holiday weekend, who diagnosed acute mastoiditis and immediately admitted us to the hospital. The pediatrician on the floor looked at Gavin’s blood work and told us that we should be transported up to CHOC, on the oncology floor. She believed that there was more going on in Gavin’s body than the mastoid bone infection. After a bone marrow test at CHOC, the doctor led us to another room on the oncology floor, where he sat us down and told us that 75% of the cells in Gavin’s bone marrow were cancer cells. Gavin’s diagnosis was acute lymphoblastic leukemia. Gavin’s oncologist informed of the good news: he had the most treatable form of acute lymphoblastic leukemia, or ALL, which is itself the most common type of childhood cancer. There is a distinct and well-established protocol for treating his cancer. Then the bad news: the treatment protocol would involve 8 months of intensive chemotherapy followed by 3 years of less-intensive chemotherapy called “maintenance.”

It’s been a long road. Gavin endured many phases of chemotherapy including scores of different drugs. He lost his hair and grew it back. He puked everywhere. But today, he is 6 years old and child-of-the-week in his kindergarten class. He just started playing T-ball. His best friend in his class, coincidentally, also has ALL. They compare the toys they get when they go in for chemo, which is served up either through an IV or spinal tap monthly.  Gavin takes his chemo pills every night and he will continue his chemo regimen through May 2013. They’re normal kids, who happen to have cancer.

Our family supports PCRF because the money they raise goes directly to pediatric cancer research. It goes towards finding better treatments for the 1 in 330 kids who will be diagnosed with cancer before they turn 18. It goes towards finding drugs with fewer horrible side effects. It goes towards finding long-term cures for these children who deserve to live out the full life that lies ahead of them.

I have so much respect for Jen for starting Team Tiny Oranges to raise money and awareness for PCRF. I am grateful for her commitment to a cause that doesn’t directly affect her family. I’m involved because of my son and because of all the other kids who fought cancer, are still fighting, or who passed on far too early. Jen is involved because she wants to be, and that’s simply awesome.”

Thank you so much Kim, for sharing your personal journey with us. Kim’s family and supporters will be out in full force on Team Gavin this year at the PCRF Run / Walk. They also wear Orange (Gavin’s favorite color).  Gavin, you know what? It’s mine too! If you would like to make a donation to support Team Gavin, please click HERE.

[Photos compliments of the Rowe Family.]

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A Sweet Lesson for Kids on Giving Back

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We did this fun (easy) charity project last year with my then 4 1/2 year old daughter Emma and I wanted to share because it was such a sweet lesson for kids on giving back!

As many of you already know, in 2011, I organized a team through my blog to participate in the Pediatric Cancer Research Foundation Run / Walk called Team Tiny Oranges. I signed both my daughters up for the 1K Kids’ Fun Run, so they each had a personal fundraising page for our team.

For Emma’s  fun-draising I thought it would be meaningful to find a way for her to get involved so we held a donut sale called “Emma’s Sweet Shop” at our bi-annual block yard sale.

In the end she raised over $258 of which we were able to donate 100% to the PCRF to help kids with cancer!

By the way, I JUST started Team Tiny Oranges 2012 to participate in the PCRF event this year on May 6th, 2012 so I would LOVE it if you and your families could join us and get involved!

If you can’t make it on that date, I hope this post might still inspire you to join our team as a “Virtual Participant” and you can do one of these projects with your kids without having to physically go on May 6th. However, I sure hope you can because it is a truly inspirational and amazing event!

Tips on How to Hold a Kids’ Charity Sale

1. Pick your sale item(s) – Since our yard sale was early AM, I thought it would be fitting (and EASY) to do donuts and ORANGE juice for Team Tiny Oranges. But you could sell anything!

About a week ahead of time I called up, Oh Those Donuts, to pre-order the donuts for pick-up. I asked to talk to the manager and briefly told him what I was doing and what the money was going to be donated to.I was shocked when he said he would be able to donate X number of donuts to help us! I wasn’t expecting any donation, so it goes to show you, it doesn’t hurt to mention it!

If you are ever in the Newport / Costa Mesa area, please show some love for Oh Those Donuts on Newport Boulevard! I LOVE a company with a big heart!

2. Pick your location – The yard sale was a perfect location for us as we had lots of people coming through our street that day.

But you could also pick a busy neighborhood park on a Saturday morning, a kids’ sports game (maybe sell bottled waters?!), or basically anyplace that gets a lot of people coming by.

If you call and speak to a manager at a grocery store ahead of time, you can often get approval to put up your stand outside their store if you book a date and time.

Or, stick your stand out on your front lawn and see what happens!

3. Get your materials ready. I suggest:

* 6′ table for set up and display (I also am a sucker for a cute tablecloth and possibly some tabletop decor! I got some fun Trader Joe’s daisies to brighten the table.) Along with a couple of chairs if you are going to be out there for a few hours.

* Some sort of way to keep your money organized. In our case, we used Emma’s play cash register from Lakeshore Learning. If your kids are old enough, this is an AMAZING math lesson on adding and subtracting to make change!

* Small bills for change. I went to the bank ahead of time and got a bunch of smaller bills, like $1’s and $5’s.

* Signage. I printed a sign and put it in a frame on the table to advertise the profits were 100% donated to the Pediatric Cancer Research Foundation. Helps with the sales and also makes sure people don’t balk at the price of the donuts! Ha!

* Napkins. We got a bunch of orange napkins from the $.99 Cent Store.

* Trash can or trash bag. Good to have handy for used napkins.

Tips:

* Price things simple. We did the donuts at $1 / each or 3 donut holes for $1. That way you don’t have to make a bunch of change.

* Sales training. I had Emma greet people, take orders and and then say “thank you” after the sale for as long as she could last without getting tired. Good sales training I figure! Start ’em young! Hee hee…

* Send a quick email blast out to local friends.  The night before I sent a quick email blast out to friends telling them what we were doing and the times we would be there. A bunch of her friends came by to buy donuts and it was so fun to have the support of friends (and guaranteed customers!!!)

At the end, Emma and I added up all the money to see how much we raised and she was SO EXCITED! I immediately then went and made a donation myself in the amount to her page on our team and showed her the amount on the computer.

Of course I would LOVE you to do this project with your kiddos and join our team and donate to the PCRF, but this project and lesson on giving back can be used for any charity of your choice that has personal meaning to you.

Most importantly, I think it is so great to start young with getting kids involved in helping other people.  And also a good lesson in gratitude. 

If anyone out there does something like this, please send me pictures and let me know, would love to feature Tiny Oranges families at work to give back!

 AND…CLICK HERE TO JOIN TEAM TINY ORANGES!!!!! 

 

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Wordless Wednesday – Joy

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Words can’t even express the feelings and events that transpired last weekend at the Pediatric Cancer Research Foundation Cinco de Mayo Run/Walk but my 22-month-old daughter’s face as she participated in the 1K Kids’ Fun Run pretty much sums it up…

Pure joy.

I was so proud of my little Tiny Oranges out there “running” for our team.  Stay tuned for a full event recap as soon as I come up for air this week!

And, for more Wordless Wednesday pictures RUN on over to Angry Julie Monday.

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The PCRF Race Weekend Has Arrived!

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It’s here!  It’s here!  The PCRF race weekend has finally arrived!

That is our team banner above. One of my team members, Calee, from eXist Designs was generous enough to donate it to our team.   I think it turned out so cute and even though this picture is not the greatest, I love how the sun reflected and made stars on the top left, because that is how I feel… Team Tiny Oranges is going to sparkle & shine this Sunday!

On October 17th I was running a race and thought, “wouldn’t it be fun to put together a team for the PCRF Run/Walk in May?”   In the beginning when I was considering starting a team I pondered whether I could even get the 10 people I needed to be considered a “team.”

Well, today we are 111 team members strong, and, have raised over $23,200 dollars for pediatric cancer research. I still am in a little state of disbelief at what our team has accomplished.  Eighty cents on every dollar raised for PCRF goes towards research so I can’t tell you how happy it makes me knowing the dollars we raised truly will make a difference.

The past six months of planning this event have been a journey for me; one I don’t think I was fully prepared for going into it.  At times it has been exhausting and a little emotional.  Correction, really emotional. It has also been one of the greatest learning experiences of my life. I have learned a lot about myself and a lot about the goodness in others.  This experience has been one that I will never forget.  And the event hasn’t even happened yet.  But it’s because of the people I have met along the way.

I have met moms like Kim, whose son Gavin, is close in age to my oldest daughter. Gavin and his family spent a year in and out of the hospital because when Gavin was 4, he was diagnosed with leukemia.

Kim wrote about her journey in her new book, “Hope Room.” She was kind enough to send me a copy. I can only read a few chapters at a time, because we might try to imagine what it would be like to walk through a cancer diagnosis of a child, but we have no idea.  The courage it took to write her story is completely inspiring and she did it with such grace and honesty.

I can’t more highly recommend this book as it will give your life a new perspective. It taught me that even my most crappy “normal” day is pretty darn good.  It also just makes want to, like my team member Kristin Bush said so eloquently in her blog, scream “F-Cancer!”   NO FAMILY should have to endure this pain.

Team Gavin will be out in full force on Sunday. Last year was their first year participating. It was 4 months into his diagnosis and treatment and he was not able to attend. This year he will be there leading his team.  And I will be very inspired, and very emotional.

During this journey we also walked through the painful story of my team member Sarah’s beautiful 5-year-old relative, Maddie James, who was diagnosed with an inoperable brain tumor in January and within two short months was tragically gone.

I think we all took Maddie’s story into our hearts as if she was one of our own. And felt the pain like she was one of our own.

As I sat there during the memorial service that windy, stormy March Sunday, the grief washed over me like the falling rain. It was so unfair. I was furious.

These are two stories out of more than anyone would care to imagine of the beautiful children affected by pediatric cancer.

As we walk and run on Sunday, we will remember Maddie and the other children whose lives have been stolen by cancer. They will remind us of  how much work still needs to be done and how much money needs to be raised to find a cure.   We will let their lives and memory shine on us and remind us why this fight is SO IMPORTANT.

And, as we walk and run on Sunday, we will think of Gavin’s story, and all the kids who are fighting cancer and winning, and celebrate their stories of survival.  We will let their stories shine on us and give us HOPE for the future.

Personally, I will be running my 3rd half marathon on Sunday.  I am so nervous. Total butterflies.

I am ready, but training for this race has not been easy.  I fought a stomach flu in March that took me out of training for a week, then a bad 14 day cold early this month, not to mention a hip injury that persisted for a few weeks. There honestly were times that I was feeling like I just couldn’t do it anymore.

But every time I felt that way, I remembered our team slogan, “you are strong,” and whether it is fighting through a difficult training period, illness, a difficult time in life, or whatever the current hurdle is, what I have learned the most from running is that we possess an inner strength that we don’t even know we had.

Running Divas did a super cute orange tank for our team that some of the gals will be wearing.  It says “you are strong” on the front.  Just those three words in a simple font.

When I wore it for my last 2 training runs I could almost feel the strength those words were feeding me. I felt so fired up about this race and this cause that I started giving people a corny “thumbs up” sign and smile when running past them, as if to say to them, “you are strong!!!”

Some people probably thought I was a big dork and others probably wondered if this poor mommy was a little off her rocker, but regardless, every time I did it, people got a huge smile on their face.  And I loved it.

So on Sunday as I fight through those 13.1 miles, I will be giving more “thumbs up” signs to remind everyone out there that “you are strong!”   And I will give the biggest THUMBS UP to the kids and families fighting cancer.  I will run in honor of their strength.

I will also be running with an enormous amount of pride because quite simply MY TEAM ROCKS!

Every time I think about the people who have joined my team and the people who have supported our team with donations, well, my heart just feels like exploding.   It’s pretty incredible, the goodness in others.  I feel so blessed I got to experience this goodness firsthand.

I will give the full update on the event next week when I come up for air and recover!

Thanks for following me through this journey, for re-tweeting my tweets, for listening about the fundraisers, for attending the fundraisers and for just being the most awesome good-hearted people in general. Your support means more to me that you will ever know.

And I can’t sign off without one FINAL fundraising request, because, we want to make the biggest impact we can. So,  if you are moved to help find a cure for pediatric cancer and play a part in our success on Sunday, please click HERE to make a tax-deductible donation of any amount to my fundraising page.   Your dollars, ANY amount, will make a difference.

Wish me luck on Sunday!

XOXO
Jen

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