RIP, Zach… Your story will continue to inspire others

,Zach Sobiech died yesterday.  You may not know who that is, but you will…  just go here and watch the video.  He’s a singer, and he’s eighteen, and oh, yeah, he had cancer – osteosarcoma, which is bone cancer.  He was diagnosed when he was 14, and he decided he wasn’t going to waste any time.  He became a rock star…

Rest in peace, Zach…  Thank you for inspiring us with your music and spirit.  We love you, and we won’t forget you, and we won’t forget what you taught us…  You don’t have to be dying to really live your life.

“You can either sit in the basement and wait, or you can get out there and do some crazy stuff.” ~ Zach Sobiech.

No fear, just faith!

May the Fourth be with you

Happy Star Wars Day!  The month of May will forever be a hard one for me, because nearly two years ago, the most perfect, beautiful little boy in the world was stolen by childhood cancer.  I did not know him personally, but he and I will always be connected because we both fought the same battle, with different outcomes.  He is no longer here to be spicy, to be wild and free, to cause trouble like he so loved to do.  He is not here to enjoy his new baby sister Poppy with the rest of his family.

Because of freaking neuroblastoma.

I know this is brain cancer awareness month, but cancer does not care what month it is.  It did not care that it stole Ronan’s life just 3 days before his 4th birthday.  He should still be here, about to turn six, this year on Mother’s Day.  I know for a fact that Maya would not mind sharing her day with him, because that would mean he was still here.  He loved Star Wars, and I imagine all his birthday parties would be Star Wars themed until he outgrew his love for it, if he ever did.

Two years ago, I started following Maya Thompson’s blog on here, before I even started this one.  Maya is Ronan’s mama, and through her words, I fell in love with this little boy.  No words can describe how much each and every word she wrote on there touched me.  I knew, and still know that, without a doubt, she would be the one who changes the face of childhood cancer, with her mafia behind her – Maya’s mafia of soldiers against childhood cancer.  Not just neuroblastoma, but pediatric cancer as a whole.  Because Ronan should still be here.  All the children should be able to grow up to be anything they want.

Maya and Ronan Thompson inspire me, just like they inspired Taylor Swift to write (compile, really, since she took Maya’s own words from her blog) and perform this song at the Stand Up to Cancer telethon last September.  You can watch the clip of her performing it live here.  You will cry, but Ronan deserves your tears because he never should have died in the first place.

May the fourth be with you, Ro. Wherever you are.

Go Gray In May for Brain Cancer Awareness Month

 

It is possible to love someone you never even met.  It is possible to have your heart broken by perfect strangers.  It’s just how the story goes if you are a childhood cancer advocate, or any advocate, for that matter.  Everyone has their heart broken at least once or twice in their lifetime.  When we feel something so deeply, when it is as personal as the fight for childhood cancer awareness and advocating for cures is for me, we can’t help but have our hearts broken over and over.  I have said before on here that every single day, my heart breaks.  My heart breaks for the children lost, for the parents, and the families, for the world as a whole, because the world will never again be touched physically by a particular child ever again.

A couple of years ago, I read this book, “Notes Left Behind“ by Brooke and Keith Desserich, and was introduced to the horror that is Diffuse Intrinsic  Pontine Glioma (DIPG).  DIPG is a brain stem tumor, and because of the delicate location, it literally has a zero percent cure rate.  It is difficult to treat. Before I picked up this book, I had no idea what it was.  My experience with cancer before reading it was regulated to neuroblastoma, which I had, and reading books about characters with leukemia.  This book opened my eyes to a lot of things when I read it in 2009, but it wasn’t until two years later that I really began advocating for pediatric cancer (more on that later this month).

This book was written about a little girl named Elena, who had this awful tumor.  I have mentioned her before on this blog, but I have never really talked about who she is.  Today, if she was still here, she would have been 12 years old.  I look at her picture now, and my heart breaks all over again for her family, for the world as a whole.  She was and is so beautiful.

 

Elena… There are no words, and yet there are ALL the words (and tears) for her.  At five years old, she was diagnosed with DIPG, and during her 9 month battle with the disease, she hid hundreds of love notes between throughout her house and the houses of relatives.  They were in between pages of books, in cupboards, in bags, even tucked in with clothes stashed away for winter.  Each one is like a hug from their little girl.  Her parents did not tell her that she wasn’t going to make it through this because they did not want to focus on the cancer, but rather on being a family and on doing the things that Elena wanted to do.   Despite having radiation (chemotherapy does not have any effect on this cancer), Elena deteriorated rapidly, losing her ability to speak and eventually becoming paralyzed.  But this brilliant, brave little girl refused to be silenced.  She continued to write love notes for her family, including her grandparents and her favorite dog, who belonged to her aunt.  Her parents found the first note a few days after Elena passed away in August 2007.

The book was their way of preserving Elena’s memory for her younger sister, Gracie, who was just 5 years old when Elena died.  I read it and cried over it, and fell in love with this precious little girl, whose dreamed of being a mother and a teacher.  She was, and is still, so amazing.  She was the first person I thought of this morning when I opened my eyes.  These days, I often wake up long before my alarm goes off.  I am unsure about what wakes me up.  I fall asleep exhausted but I don’t stay asleep for long, and I know it’s because of the children…  Childhood cancer is the NUMBER ONE cause of death by disease in children.  Every 4 hours a child dies from one form or another.  Pediatric brain cancer is the most deadliest form, and DIPG, well, just look at the statistics.  Zero percent cure rate.

It’s the first day of May, which is National Brain Cancer Awareness Month.  Please do what you can to spread the word…  Wear gray.  Buy “Notes Left Behind” and educate yourself and others.  And most of all, in the words of 12 year old Jessica Joy Rees, who also had DIPG and passed away less than a year and a half ago, NEGU (Never Ever Give Up).   The children are waiting…

Last Week

My appointment last Thursday went well. I had x-rays, and I got the tape taken off my back (didn’t really feel it ripping off, which was probably a good thing). It has always been painful for me to view my own x-rays, because although I can feel my scoliosis, seeing it in black and white is another thing altogether.  I think it is easier to pretend it doesn’t exist when I am not looking at the evidence.  I can feel it, but seeing it is another thing altogether.  It makes it more real, and that reality cuts through everything, even happiness.

My upper back still itches more than anything, although it is not constant like it was with the tape on. Two nights before my appointment, however, I felt a pinching in my right shoulder. It hasn’t gone away yet, although the physician’s assistant told me to just give it time. I don’t feel it at all when I lay down, so that is how I am spending most of my time these days.  In the weeks before my surgery, I was having stomach trouble. I went to my primary care doctor a couple times because it got to be too much, and it was going on for too long for my personal comfort. I was losing weight. They eventually took my blood to test, and that is how I found out that I am anemic. I am taking iron supplements now, and although I feel tired most of the time, I am lucky because I can rest when I need to.

On Friday morning, I had another appointment to check my stomach issues out further. I have had heartburn since high school, even though I didn’t know what heartburn was back then. I suspect my scoliosis causes this. I can see and feel why it would, even without viewing any x-rays. I can’t really stand or sit up straight unless I force myself. I am not a very active person by nature, because everything else I do takes so much energy that most of the time I end up having no spare energy at all. After I saw the orthopedic surgeon and had my back x-rayed, he wanted a CT scan to get a clearer picture of what was going on.  I mean, it was clear on the x-rays.  We could see the broken area and we could see exactly why it was hurting where it was (in the x-rays, the top of the rod looked like it was going to poke through me, which made me wince…) But the surgeon wanted the CT to be sure.  So he got it.  And he found something weird.  A shadow.  An ultrasound revealed it to be a huge benign tumor, thank goodness, and now I have to go see another doctor for that.  Happy, happy, joy, joy.  When it rains, it pours, right?  But through it all, I trust God…

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”  ~ Isaiah 41:10

On a brighter note, it is now 75 more days until my brother Patrick gets married!  So much to do, so little time!

God Has This

My surgery earlier this month went well.  Originally, my surgeon was saying that I could go home the same day, but then when he saw me pre-op, he said he thought about it, and wanted me to stay overnight so that they could pump me full of antibiotics.     My favorite part of the whole thing is that I do not remember having a breathing tube in place.  I think the breathing tube is the absolute worst part of waking up from any surgery.  It is impossible not to think about it too much, to focus on it, and when I do that, I tend to hold my breath because it hurts to breathe.  This doesn’t work very well with a breathing tube stuck down my throat either, because it hurts just as bad not to breathe.  This time, however, my throat was dry, but it didn’t exactly hurt.  I was grateful for that at least.

My Papa was there, as well as my parents and sister, waiting with me before I went into surgery.  Laying on the gurney waiting to go into surgery, I had no pain.  It was nice.  Of course, I knew it was short-lived, but I enjoyed it just the same.  The nurse started me on some fluids, and I was covered with heated blankets.  I love warm blankets!  It is my favorite part of being in the hospital, if I had to say what my favorite part was.  At one point, I said goodbye to everyone, they kissed me, and left, only to have me lay there, waiting.  Then the surgeon came and said, “Where is everyone?  Where’s your dad?”  Ha.  Luckily, my dad came back, and that was when my surgeon said that he thought I should stay overnight.  It was a minor surgery – it took about one hour to remove the broken piece of rod and cut down the other one on the right side of my spine.

After I initially woke up after the procedure (it was a short and quick one), I slept on and off for the rest of the day.  My brother brought his family to visit.  Aliza brought me  a little stuffed animal of hers and one of her books (it was no mistake that the title of said book was, “God Watches Over Us”) to borrow, I guess. She also drew me a little picture and told me that it said something like, “This is for my Danielle, because Aliza loves her very much since she buys me presents.”  It made me smile.

I normally do not like jell-o very much, because it reminds me of hospitals and a number of other reasons, but that day I was grateful for its coolness, as it soothed my parched throat.  Where I had no pain before the surgery, I now felt like yes, I had been sliced open, and things had been done to me.  So. Much. Pain.  I do not know what they were giving me as pain medicine, but I was surprised at the smallness of it and the fact that they were just giving me one at a time.  I felt how women in labor must feel:  give me drugs and give them to me now!  Getting up to go to the bathroom was pure torture, so I only did it when I felt like I couldn’t hold it in any longer.

Needless to say, it was a long night.  Are nights in the hospital ever anything but long?

The surgeon came by the next morning to check up on me.  He asked me how I was.  I told him that I hurt.  He said he would switch my pain medicine to something that was stronger.  And he did.  I did not like it when he had me sit up so he could take the tape off my back.  Twice, I felt something wet (blood) run down my back and I screamed out, “Wet!”  I was out of that hospital before lunch, cheered by the fact that my brother’s best friend’s wife had their baby girl that morning.  Welcome to the world, Shiloh Mae!  I can’t wait to meet you in person!

It is now two weeks later.  Whereas I do feel somewhat better, I can’t seem to shake the feeling that this surgery won’t work in the long run.  I am to the point where I only take my pain meds when I absolutely need to, mostly at the end of the day, when my back begins to ache.  I can’t help but worry endlessly – what if I am right back to where I was before my full spinal fusion in 2010?  What if we have to find a surgeon in Seattle to do it again?  It is really hard work, recovering from spinal surgery, but this time, it was easier.  Minor surgery, quicker recovery.  Major surgery, longer recovery.  My scoliosis is a tricky thing, because it is the result of the radiation treatments I received back in 1983, and I would be hard-pressed to find another person out there who can say that.

I have an post-op appointment Thursday morning.  I am looking forward to it if only to get the blasted tape off my back.  It itches so much.  But I know I am blessed.  All of my complaints are minor.  And when the pain gets to be too much, I just lay down and curl up with my cuddly dog.  I worry, but I try not to.  I know God has this.

I know it’s been a while, but I have a very good reason!

I know it has been a while since I last wrote on here.  I have a feeling that this is going to be an extra long post, and I apologize for that.  Things happen.  Life happens.  And sometimes, pain happens.  Physical pain, it seems, is always just a heartbeat away for me, especially when other things are falling into place.  And the emotional pain that comes with the physical, well, that’s never too far away either.  I have something called “childhood cancer survivorism,” and it’s never too far away.  

Let me back up a little bit.  The last Sunday in January, my brother Ryan took me to meet my grandparents’.  One of my best friends from high school, Valerie, was getting married on February 2nd, at the zoo in Phoenix.  February 2nd is a special date for Valerie, since her parents had gotten married that day, as well as her paternal grandparents.  I have the best friends ever…  Truly I do.  My other best friend, Tammy (and her husband Curtis) agreed to come meet me in Phoenix. I don’t know how I would have done the weekend without Tammy there.  

The whole weekend, I was very aware that I was in the same city in which the Thompsons lived. Rockstar Ronan.  Maya.  I saw Phoenix Children’s Hospital in passing, and the sight of it sobered me.  That’s where Ronan was a patient, I thought.  Waves of sadness washed over me, and I fought really hard to hide it, and to act happy for my friends.  Yay, a wedding at the zoo! I was connected to Maya though.  She is pregnant, (Poppy’s due next month, in a couple weeks!) and although I wanted to meet her and to hug her so bad, I knew in my heart that it wasn’t going to happen that weekend.  I told myself I was okay with that, but to tell you the truth, I really wasn’t.  Ronan and Maya are the whole reason why I am an advocate for pediatric cancer.  I really had no idea it was as bad as it actually is until that night when I found Maya’s blog.  The children I follow on Facebook and on blogs are dying.  It is true what I’ve said before…  every single day, my heart breaks.  A child going home on hospice, a child trying to be brave in the face of no hope, a child becoming manic, unrecognizable, becoming skin and bones, like those pictures of Holocaust victims/survivors – all of it just brings me to my knees.  

(How is it that I can turn everything and anything back around to childhood cancer?)

Anyway, I was in Phoenix for a wedding.  I was a bridesmaid.  Friday, February 1st, was an extremely long day.  Two of the other bridesmaids, Jennifer and Sarah (Jennifer is a childhood friend of Valerie’s, and Sarah is her college roommate), came by with shirts they had made for Valerie’s bridal party.  They were both really, really nice, and I liked them both instantly.  We’ve been Facebook friends ever since Valerie had asked us to be in her wedding, and we’ve talked, although I have never met them before.  Jennifer lives in Colorado, and Sarah lives in Alaska, though Sarah is coming back to Washington this summer.  Jennifer and Sarah had errands for us to run, decorations for Val’s car to get.  Tammy’s husband Curtis was such a good sport. despite the fact that he kept saying he wanted to dress like a Safari guy for the wedding.  

The wedding rehearsal went off without a hitch.  When Tammy and I got to the zoo, I saw Valerie, and the rest of the wedding party standing outside of the zoo’s entrance.  I met Tanya, Val’s maid of honor, and I also met her grandparents.  We got a tour of sorts of the zoo, and saw where the reception was going to be, and where we would be changing into our dresses.  Valerie had told us the colors (tangerine and champagne – mine was tangerine) she wanted us in, and then left the choosing of the dresses to us.  Val and Chris had come home to get the rest of Val’s stuff from storage during Christmas break, and I was able to give my dress to Val (after having SEVEN inches hemmed from it!) to take with her then, so I didn’t have to worry about flying with it.  

After the rehearsal, we headed to an Italian restaurant for dinner, and then us girls went to the Cheesecake Factory for a little bachelorette party.  Yum!  After that, we headed back to the hotel, where we watched “Bridesmaids” (that movie was just as hilarious as I remembered it).  And then we got our beauty sleep, early to rise the next day.  Breakfast was in Val’s bridal suite, and Val’s cousin, Katie, did our nails. We got our hair and makeup done and went to the zoo.  Eventually, everybody was in one place, and we got into our dresses.  We had rides down to the wedding site/area.  It was a Mormon ceremony, which, in my opinion, was short and sweet.  I walked with Derek, Val’s younger brother.  It was good.  I didn’t fall or stumble once!  

After the ceremony, we had pictures.  We took some cool ones by the giraffes (we got to feed them treats!  I don’t know why, but I have always thought that their tongues looked rough, but they’re actually just tongues, soft and wet like ours!) and on the carousel.  While we were doing this, the other guests had time to enjoy the zoo.   We were able to go enjoy refreshments on the patio outside of where the wedding reception was going to be.  It was here that I discovered my love for coconut shrimp.  Never had it before!

They introduced Val and Chris as husband and wife (they are legally changing their last name to Skorpion, since nobody really knows how to say “Robison.”  It is not pronounced like it is spelled, and also because Chris has a small business called “Skorpion’s Creations” in which he makes jewelry and does photography), and the party began.  Dinner was delicious…  I had the chicken, and it was super duper moist and savory.  The music and dancing started after dinner, and the zoo people had some animals out for us to look at and learn about.  I saw a real hedgehog (which made me think of my little shih tzu Buffy and how much she loved her squeaky hedgehog in her puppy years…  I have no idea where it is now) and an owl, which was cool.  Thankfully, they didn’t have any live snakes out (the horrors!) but they did have a stuffed toy one out for the photo booth pictures.  It was so much fun…  the whole day, the whole weekend, though exhausting, was worth it, because I got to see my dear friend married!  The wedding cake was cool too – it went with the zoo/animal theme.  I sent a picture of it to my brother’s fiance and teased her, “Do you want a wedding cake like this?”  Haha.  No, she doesn’t.  For one thing, she and my brother are having a rustic wine theme for theirs.  

The next day, I got up early, and got dressed and packed up to fly back to Washington.  I was able to go to Val and Chris’ room to watch them open their wedding presents, and then I had to say goodbye.  My flight wasn’t until 4ish that afternoon, but Tammy and Curtis had to drive back to Yuma. I really, really, really appreciated them coming to help me.  I honestly don’t know how I would have done it without them.  It was at the airport where I felt something give inside me, the moment that one of the rods that was supposedly fused to my spine broke.  I remember thinking, “Ouch, what is that?” and not being able to breathe for a minute or two because of the pain that followed.  But then, it kinda faded, and although that was also the moment that my back started to itch really badly, I was able to ignore it.

The week that followed the wedding was also spent at my grandparents’, and I was not in any real pain yet, but I was still miserable because my back seemed to have a really bad case of the chicken pox.  The more I itched, the more itchier it became, so I eventually just gave up on that.  I also noticed (or felt) that there was a pocket of fluid at the top of my spine, and I was like, “Uh-oh, that cannot be good.”  I decided to just wait and see if it went away on its own.

It didn’t.  

Phone calls to my doctor in Spokane were made.  He couldn’t really do anything but consult because he was back full time at Shriner’s Hospital, but he made recommendations for orthopedic doctors in Wenatchee (thank goodness).  I had x-rays.  The rod on the left side of my spine was broken.  Yikes.  At this point, it became clear to me that I was going to have to have a 5th back surgery, and every fiber of my being was screaming, “NONONONO.”  But what can you do, right?  It was broken.  It wasn’t going to fix itself.  

The orthopedic surgeon saw me, and he told me that he was going to try to help me.  Thank goodness, right?  He was worried that if he just took the broken piece of rod out of my back, the other one would break also.  So now he is going to cut the rod on the right side back, as a precaution.  The itchiness I am experiencing is from the nerves being brushed up against.  Don’t touch my nerves.

My niece Aliza turned 4 last month. The theme she wanted was Hello Kitty, and so Hello Kitty it was.  Anything for this little girl, who I love with every inch of my soul.  You know how much I love you? To the supermoon and back.  That’s right, baby girl.  I look forward to weekends because they mean time with her, and seeing her is always so gratifying.  I love seeing her face light up when she sees me.  I am not just bragging when I say she is super smart (all right, maybe a little).  It broke my heart when the time came to go to her birthday dinner at Abby’s Pizza, and I was in so much physical pain I couldn’t go.  I wanted to go so bad, for her, but I just couldn’t.  When my mom and sister came back, they had pizza for me, as well as a piece of cake.  Aliza had written, “I love you, Danielle” on the pizza box, which warmed my heart.  

When I had radiation back in 1983, they obviously did not know what they were doing, and just radiated the spot where the tumor was, and by proxy, my lower spine.  Now, because they totally messed up my spine, Seattle Children’s knows to radiate the whole spine.  So if you were a patient there after 1984, you’re welcome.  They knew what they had done even back then, and what could say say, but, “We’re sorry.  Good luck.”  This is EXACTLY why more research is needed.  Kids are not miniature adults, and yet, what kind of chemotherapy drugs do they get?  Adult chemo drugs, smaller doses of the poison, but still.  At least some adult cancers have causes…  lifestyle causes, eating habits, smoking, etc.  But what is the causes of pediatric cancer?  

That is what research needs to look at, developing more effective drugs/treatments with children specifically in mind. But that is a little hard when pediatric cancer gets less than 4% of annual government funding here in the good old U.S.A.  It’s mind-boggling to think that cancer is the leading cause of death in children, and yet no one even cares – not unless they have somehow been touched directly by it.  

There are a few things in the works to change this.  We have yet to hear from President Obama on the petition for lighting the White House gold in September but we are not giving up.  We will NEVER EVER GIVE UP.  TheTruth365 is becoming more active.  We are becoming more active.  Childhood cancer needs advocates who are also activists if anything is going to change.

It’s true I’ve been forced to slow down.  My body is forcing me.  My 5th back surgery is scheduled for Tuesday, April 2nd.  

Happy, happy, joy, joy, right?  I can do this.  It will be difficult, but I can do it.  I’ve done it before, after all.  Doing hard things is my specialty, don’t you know?  :)

Sign the Petition: Let’s turn the White House GOLD in September for the kids!

One Word, One Year

 

2013 holds a lot of promise.  It is a brand new year, and with it comes a lot of hope.  Hope that maybe this is the year that the children get heard, that childhood cancer gets a lot more than 3% of federal funding.  As TheTruth365 film pointed out, both the White House and Congress voted unanimously in 2008 to increase funding for childhood cancer research. This plan fell by the wayside when they didn’t properly fund the Conquer Childhood Cancer Act.  Because of this, nothing has changed.

When I think of this, I think of all the little lives lost, I get so upset.  These children could still be here, if only.  They SHOULD still be here.  It is utterly mind-boggling to me that if only politicians put the future of this country first, we wouldn’t be in this mess to begin with.  Children would not be dying.  There would be cures.  There would be hope.  When parents receive a cancer diagnosis for their child, the first question that springs to mind would not be, “Is my child going to die?”  Instead, the thoughts would be like, “Okay, breathe, what do we have to do to beat this?”

This year, I am going to focus on one thing:  advocating.  One word, one year.  Things can change.  I know it.  I believe it.  I don’t mean I have to do more – I mean I have to utilize what I have and use it for the good of these children.  I have words to give.  I have a truth to tell.  Even if it means that I have to tell my story so many times I am practically blue in the face, I will do it.  Children deserve better.  They deserve every chance at life, every opportunity.  They have to be protected.   They are the future.  They need to be treated like it.

Advocate:  my one word for this year.  What I am focusing on, what 2013 will stand for, is the children.  I will advocate for them, because once upon a time, I was one of them.  I got this one word idea from SheLoves/Magazine.com.  It makes sense to me.  Before, I think I was trying to focus on too many things at once and gave up, because it got to be exhausting.  No more.  I will focus on advocating for those who deserve so much more than what they get.  I will advocate for those who cannot speak for themselves.  I will advocate for those who deserve every single promising opportunity that life tosses their way.

As SheLoves/Magazine.com states, my one word isn’t another to-do list.  It is simply a direction I want this year to take.  The last two years since I have started going down this road have been eye-opening.  I know what I am doing now.  I know where I want to be.  And that is exactly where I am right now.

I challenge you to choose one word for this year as well.

 

Tragedy is one of the Loudest Things in the World

Collage courtesy of Dawn Guler

Firstly, I must admit that I have not read or watched anything on Friday’s elementary school tragedy outside of Facebook.  I cannot bear it.  My dad has had CNN on the TV the last few mornings, and I thank GOD that I am hard of hearing and can’t understand what they are saying on TV unless I am reading the closed captioning,  When I look at the TV, the images and the story headlines are enough to bring me to tears.  I quickly look away.  It is not that I don’t want to cry for the precious lives lost – I do – but I know that if I start, I would have a really hard time stopping.  So I just allow myself a moment here and there, in which I tear up and then quickly find something to distract myself with.

One thing I know for sure:  God is not to blame for this tragedy.  No one is to blame but the killer.  I don’t want to dwell on dark thoughts, because that would not be helpful.  But I will say this:  It really says a lot about how messed up we are as a society when half the country is wondering how we can keep this from happening again, and the other half is wondering how to keep the government from taking their guns away.

Seriously, people?  On Friday, I said something about the 2nd amendment on my Facebook status:

It is mine own opinion that there is absolutely NO reason a law-abiding citizen should have semi-automatic weapons.  No reason whatsoever.

I have had this sick feeling in my stomach all weekend.  Still have it.  And when I read the names of those lost to this world, those innocent, precious lives, my heart shatters all over again.  I cannot imagine what it would be like to be a mother or father and have to take my child, or children, to school today.  I cannot imagine that fear.  That uncertainty.  That heartache.  I pray for these parents and I pray for each and every child in school.  School is supposed to be a safe place, but the reality is, anything can happen, and sometimes bad things do. We can’t control the actions of others, much as we’d like to.   There’s always that risk.  It’s horrible and frightening, but it is the reality of this world we live in.

I do NOT want to remember the name of the person who is the cause of this tragedy.  He does not deserve to be remembered.  Instead, I want to remember the victims’ names.  I want to remember their faces and their stories.  Their families and friends have a permanent place in my prayers.  The little faces of the children and those of the teachers who went with them are in my heart.    They will always be.  Tragedy is one of the loudest things in the world, and within it, I want to offer a moment of silence to remember.

“Blessed are the poor in spirit, for theirs is the kingdom of heaven. Blessed are those who mourn, for they shall be comforted. Blessed are the meek, for they shall inherit the earth. Blessed are those who hunger and thirst for righteousness, for they shall be satisfied. Blessed are the merciful, for they shall receive mercy. Blessed are the pure in heart, for they shall see God. Blessed are the peacemakers, for they shall be called sons of God.”– Matthew 5: 3-9

Comfycozys for Chemo

When one is diagnosed with cancer, any and all sense of modesty and dignity is stripped away.  It is not a comfortable feeling to have nurses tearing at your clothes as if they have all the rights in the world to do it.  They try to be gentle, and they try to be respectful, but let’s face it…  no matter how much they try, patients are still left feeling not only sick, but helpless as well.  Often, at the time, they are too sick to care, but more often than not, it comes back to them later.

Comfycozys for Chemo was inspired by a girl from Phoenix, AZ named Amanda Hope, who was diagnosed with acute lymphoblastic leukemia when she was nine years old.  She endured three long years of harsh chemotherapy treatment, and finally had a “No Mo’ Chemo” party in March 2011.  But a few months later, at the end of June, she was sick again.  Her parents were informed that there was a mass in her brain, and that she needed a biopsy in order for the doctors to figure out what it was.  Amanda’s two sisters were tested to determine if they were candidates for a bone marrow transplant. Her oldest sister was a perfect match.  Amanda spent her time preparing for the transplant – receiving more chemo and radiation and another surgery to insert a Broviac® port intended for fluids, medications, and blood work during her transplant and recovery.   All this time she kept smiling, praying for other children. She mourned the loss of her hospital friends along the way and celebrated with those who were still in remission.

A week before her scheduled transplant in January 2012, Amanda’s cancer cells mutated. Chemo was like candy and she went from 0.05% cancer to 80% so she was no longer a candidate for transplant. Amanda never gave up hope and always believed in her healing. Amanda fought hard all while making everyone around her smile and laugh. She also had a dream. Amanda’s dream was that one day when she was healed she would make a clothing line for kids going through chemo that would allow them to keep their “modesty and dignity.”  Amanda always hated her body being exposed to a room full of strange doctors, nurses, and others and wanted better for other children going through the same thing.

Amanda lost her battle here on earth on March 30, 2012, but her dream lives on.  A week after her passing, Amanda’s mother launched a Facebook page to make her daughter’s dream come true.  “Comfycozys” are ”special T-shirts are designed with zippers, pockets and slits to allow access to chest-ports without exposing the child’s body and to allow for storing of the IV lines preventing tangling and pulling on their clothing. They are made in the fun, tie-dye colors that Amanda loved so much.Amanda’s spirit of life and integrity of self continues to inspire us all! Her dream is coming true. Five hundred children will receive “Comfycozys for Chemo” T-shirts this Christmas. By next Christmas, our goal is that every child in Arizona who needs a port will receive a “Comfycozys for Chemo” T-shirt from Amanda Hope’s Dream. With God’s blessing, please touch a child’s life today by supporting this amazing cause!

I think all children fighting cancer throughout the country should have a Comfycozy!  It is such a great idea!

DISCLAIMER:  The italic parts of this post are direct quotes from the ComfyCozys for Chemo Facebook page.