Books for Teens with Cancer

Hi everyone. I’m going out on a limb here, and giving something a try. Before you continue I want to ask 3 things of you. Please consider each one!

1.     Read this entire post to the end, even if it doesn’t go any further than you just reading it.

2.     PLEASE share this post, with an encouragement to others to get on board, even if you can’t help the cause yourself.

3.     Prayerfully consider donating here: http://www.gofundme.com/h74i30

OK, so you’re probably wondering what this is all about. Most of you know two things about me. First, my daughter was diagnosed with cancer at 3 years old and was treated at St. Jude Children’s Research Hospital. Second, I am a writer. My books are generally geared for the young adult crowd.

 

 

During the first week of January we will be returning to St. Jude in Memphis for Emma’s 2 year off-treatment checkup (she’s been in remission for 4 ½ years now!). St. Jude treats upward of 5,000 kids a year, including teens. Many of these patients are in Memphis for long stretches of time (sometimes 2 months, sometimes 9 months, it just depends). What I would like to do is take a box of my young adult books and hand them out to the teens who are being treated while we’re there. My goal is 50 books, but I can’t do it alone. It costs me roughly $10 per book. If I can get 49 other people on board who would donate $10 each, we could take 50 books to give to the teens who are fighting cancer right now. But I will take whatever number I can get—if we get 10 donations, I’ll take ten books. On the flip side, if we get 100 donations, I’ll take 100. I want to stress, I won’t make a penny off this. Also, if you are a writer, and you’d like to donate some of your own books, feel free to contact me about that. I’d be happy to bring more.

Sharing is vital to the success of this idea. If I share it with all of my friends, and even half of you share it with yours, it will reach so many more people. These teens are fighting for their lives, and they’re isolated from their friends and normal life. A box of books isn’t much, but it’s something, and books are what I know.

If you feel even the slightest pull on your heartstrings for this idea, I hope you’ll consider not only sharing about it, but also donating. Again, you can donate here: http://www.gofundme.com/h74i30. Thanks so much for reading!

NEGU! The Story of Joy Jars

When Emma was going through treatments, we heard about something called a Joy Jar. All I knew at the time was that it was some type of charity that sent jars of goodies to kids fighting cancer. I signed Emma up, and without too much of a wait we received a jar full of fun toys and games for Emma.

Fast forward a few years. Sometime over the summer I was contacted to help promote a book during September--Childhood Cancer Awareness Month. I said I would be happy to help promote the book, which was touted as "an inspiration that would motivate a person to do something when they read the story of the girl behind this movement of hope."

I received the book in the mail at the beginning of September, and I started reading. Low and behold, it was the story of Joy Jars! I started reading it that very night. I shed tears, but I also smiled. What an inspiration this little girl was!

I can't recommend it enough, and I hope you'll check out Never Ever Give Up: The Inspiring Story of Jessie and her Joy Jars.

Superhero Fun Day!

Did you know? September is Childhood Cancer Awareness Month! Families across the country have been working hard over the last few years to raise awareness and funding for pediatric cancer research, and local communities have slowly been getting behind the effort. I am excited to announce the tireless efforts of many families in my own community, and I hope that even if you're not local to me, you will work with others in your community to do the same! September 12 will be superhero dress up day, and we encourage folks to take a selfie and post it on social media to spread the word. Then, September 13 will be the official Superhero Fun Day. My own girls are excited to be part of the fun, as you can clearly see! To learn more, I encourage you to check out the Superhero Facebook page or the official Superhero Fun Day website.

LOOKING BACK

The other day I was digging through a cabinet looking for the salt (true story!). It is the same cabinet I store my cookbooks in, and I noticed a pink notebook shoved in among the cookbooks. Curious, I pulled it out. It was a pretty little notebook (see picture below). Again, I was curious. What was this notebook, and why was it with my cookbooks?



Well, I still have no idea why it was shoved in with the cookbooks, but I now know what it is (and I can't believe I ever forgot). When Emma was diagnosed back in 2010, someone gave me this notebook to jot down my thoughts.

I read through the notebook, and there were actually only a few entries, many only a few sentences long. But after I read it I was a little bit surprised at the thoughts I'd had, and I decided to share them with you today.

* I understand the whole "asking for the grace to get through the day -- the moment -- " thing. I feel like I need God's help to get through this sentence.

* The only thought that keeps me from being angry is that God can do whatever he wants. He's the almighty God of the universe, after all. Who am I to say, "God, not my daughter!" How can I take personal offense at what God chooses to do? It is his world, and I guess he can do whatever he pleases. I have to keep that in the forefront of my mind.

* I understand now that had they (St. Jude) not diagnosed her and started treatment immediately, the mass would have crushed the main artery to her brain. This was on the verge of happening when she was brought in, and they told us she had to make it through the next 48 hours. I was told this then, but I understand it now. I think this was God's grace, because had I understood t then, I think I would have had a nervous breakdown.

* One of the first thoughts Micheal and I had after Emma's diagnosis (and the help we got from SO many people) was, "Awe man, we're going to have to be friendly now." And we meant it! How sad. No wonder God had to do something big. We were in our shell and we did NOT want to come out.

Del Immune's Top 60 Cancer Blogs

Well paint me surprised! I was notified last month that Ramblings of a Cancer Kid Mom has been named in the top 60 cancer blogs on the web. It was a pleasant surprise, and very validating. I'm so pleased and humbled to be able to offer help, hope, or inspiration to others. If you would like to find other cancer blogs (about pediatric cancer, or other types of cancer) you can visit the Del Immune blog post on the subject. I hope you will find an extra snippet of hope within their virtual pages!

More Life Lessons 101 with Teacher Katie: complaints

Keep your big mouth shut...have you ever heard this saying?

 

You don't go very long in the pediatric cancer world before you find someone who has it worse than you--often a lot worse. Though someone whose child has cancer has a lot worth griping about, that doesn't mean they should do it. This is something I've had to remind myself of often, because it's so easy for me to fall into the complaint mode! The fact is, we ALL have something worth griping about. Though my child doesn't have cancer anymore, she does have side effects. Sometimes she has to go to physical therapy, sometimes other therapies, and that means taking her to appointments. I have a life outside of her illness, so these appointments are inconvenient. I have to remind myself that I don't care if they are inconvenient. I want what is best for her, so I do it. Period.

You may not have a child with cancer, but surely you are busy. We all are. You have your own storms: they may be physical, mental, or emotional. We all have problems, and I'd bet we can all agree that all of them suck.

I grew up with a saying (that is likely and hopefully untrue, but still) that says, "90% of the people you tell your troubles to, don't care. The other 10% are glad you've got them." While I don't think EVERYONE is that callous, I do think there is a lesson to learn from the saying. While your problems are most important to you, my problems are most important to me. So the next time I feel like complaining, I'm going to take my own advice and keep my big mouth shut! Do you ever feel like complaining (I know the answer to that!)? How do you deal?

Losing Weight [of the emotional kind]

A few years ago, when we were staying in the Ronald McDonald House of Memphis, our little family was playing in the "game room". A teen boy and his father came in to hang out. They were waiting for the shuttle to pick them up and take them to the grocery store.

At some point, the conversations turned to the fact that we had a car. You see, we don't live far enough away that it warrants flying to Memphis, so we have to drive. This particular family's situation was the opposite--which meant they had flown into town and were without a car. The father began telling us how terrible it was to rely on the hospital shuttle for things like going to the grocery store. Both I and my husband got the distinct impression he was asking for a ride...without actually asking.

For whatever reason, neither of us offered said ride. The man eventually got a little huffy and puffy, and left the game room.

Looking back, this moment fills me with guilt and shame. Oh sure, we had lots of reasons to NOT help. What if we needed our car? What if Emma needed to go to the hospital for something (and this was a legitimate concern, as these kids can literally be A-OK one minute and extremely sick the next)? We couldn't offer a ride...could we?



We talked about this man recently, remembering how we had the means to help but didn't. We decided that if we were ever in the same situation again, we would definitely help. The Bible tells us to not withhold good when it is in our power to give it. I had to let go of my guilt over the situation--truthfully, it wasn't that big of an issue. He got his ride to the grocery store and all was well. But.

Do you have any "silly" regrets like this? Any resolve to not let it happen again? Share them here and we can help each other learn :).

Post Traumatic Stress Disorder...or something like it

Once upon a time there was a girl. She was a happy girl. A brave girl. A silly girl. Unfortunately, this girl hit a roadblock, and it sent her to a not-so-happy place.


Doctors now think Emma has a mild form of post traumatic stress disorder--more specifically, Pediatric Medical Trauma Stress.

Several studies have been done now which link children with cancer, and their caregivers, to PTSD.

Here is one description:

HYPER-AROUSAL (Taken from After the Injury in regard to children with PTSD)
Hyper-arousal also starts with a natural and normal response to danger – the “fight or flight response.” After an injury or accident, this “fight or flight” response might not turn off, even when you are safe.

• Your heart keeps pounding and you start sweating.
• Your body is still on the lookout for danger.

Another great site on the subject is the Children's Hospital of Philadelphia site. They talk about the symptoms preventing a child from performing every day tasks. This, in particular, seems to be Emma's issue.

Still, I am astounded daily by this child's strength. She recognizes that she has a "problem", and you can literally see it in her face as she fights it. I have no doubt she will overcome, and it inspires me to keep going. Really and truly.

Have you ever witnessed this type of strength in someone else? Did it inspire you to do a little better? Try a little harder? Become a little greater?

I ask for prayers for Emma, as well as any child (or any person in general, really) who faces this. It is heartbreaking, to say the least.

Carla Rossi's The Living End of Cancer

Hello, Katie!

Thank you for letting me stop by your blog to celebrate the release of The Living End of Cancer, my personal memoir about my journey through non-Hodgkin lymphoma.

There’s no need to explain to anyone hanging out around here how catastrophic that “day you get the diagnosis” day really is.  So I will just share with you one of the things that happened shortly thereafter that enabled me to get battle-ready.

As I sat dumbstruck, a scripture dropped into my head and heart.  “I will not die, but live, and declare the works of the Lord.”  At the time I couldn’t even remember where it was in the Bible or if I had it right, but soon I was reading the powerful declarations from Psalm 118 and realized this would be my mantra.  When

Buy for Kindle       Buy for Nook

 

someone asked me how I was doing, I didn’t admit to how bad I felt or gush about the horrors of chemo, I simply stood tall and said, “I will not die, but live, and declare the works of the Lord.”

 

Now in complete remission, that’s what I’ve tried to do with my cancer memoir – declare the works of the Lord.  I had the right medicine at the right time with the right team of medical professionals and caregivers – and I had my faith and God’s healing hand to get me through.

The Living End of Cancer is honest and sometimes raw, but it’s also full of scripture, humor, and hope.  My intent in getting my journey on paper has always been to encourage others.  The cancer fight is not pretty, but we are not alone.

I shall not die but live, and declare the words of the Lord.  Psalm 118:17 KJV

 ***

In April of 2010, multi-published, award-winning author Carla Rossi felt the best she ever had. That all changed with one routine doctor visit. Tossed into diagnostic tests, surgery, chemotherapy, procedures, and targeted drug therapy, Carla gives us a transparent glimpse into what the journey was really like – good and bad. With friends and family at her side, Carla takes us through the ups and downs of her non-Hodgkin lymphoma cancer journey with practical and scriptural faith, humor, and her own understanding of the medications that helped save her life.

Connect with Carla:

www.carlarossi.com 

Twitter: @carlarossiwrite

Email: carla@carlarossi.com

FB: www.facebook.com/carlarossiauthor

 

 

Cartwheels and Neuropathy

Yes, I realize that is an odd title. But in our world, the two have merged. You see, the first one is helping the second one.

Emma was diagnosed with neuropathy a few months ago. It is in her hands, and it basically means she has zero strength in that area. For instance, on the physical therapist's little "squeeze machine", most girls Emma's age can squeeze 27 lbs. of pressure. Emma could squeeze 5. This was concerning for several reason, though obviously only for quality of life purposes. (I am going somewhere with this, so hang on!)

The neuropathy isn't a new thing. She had it throughout most of her treatment, especially in her feet. She did overcome the foot issue with physical therapy long ago. The hand issue is something we all assumed was getting better, but realized recently that it wasn't. So she did a little physical therapy, mostly at home but in a PT facility as well.

This week she got it in her head that she was going to do a cartwheel. I smiled and nodded my encouragement, but truthfully, inside, I had my doubts. Emma is weak, I told myself. Emma doesn't have any hand/arm strength or any core strength. Emma is going to fail.

And do you know what happened? She did not fail. Oh, she did the first twenty times. But that kid...she just didn't give up, bless her. She kept on, and on, and on. She is still keeping on, and it's been three days now. She is almost 100% there. She can launch herself forward, and she gets her feet almost all the way up now.

What a lesson for me. While I know she couldn't have done that a couple months ago, with the PT we've been doing every single day for at least 90 days, she has developed the strength to do something she couldn't have done back then.

Facing something hard? Feel free to tell me about it.

And don't. Give. Up. Keep. Trying. Keep. Trying. Keep. Trying.