Times and Tides and Tears

Two years. Two long and short years have passed since I last posted on this blog. Back then, Emma was doing so well. She was nearing her 5 year remission mark, meaning she would be considered "cured". Instead, at that 5 year mark, she was being diagnosed with leukemia. Less than 1 year later she would be in Heaven.

Sometimes, I want to write about things. Feelings and thoughts and anguish. Generally, I shove those wants aside. Recently, though, I've been thinking of writing them down here. So, I decided to give it a shot. My posts will generally happen as I feel the urge, so probably not on any set schedule. They'll mostly be on ways I feel and things I might be learning from those feelings.

If anyone reads them or if no one reads them, *shrugs*, I still want to write them down. I hope to post my first update soon.

Book Collection a Success!

I want to give a great big THANK YOU to everyone who donated money or books, and to everyone who shared about the book donation collection for kids with cancer. We collected over 100 books for the small children, middle grade readers, and teens at St. Jude Children's Research Hospital!

Once again, I'm reminded of the giving hearts of others. The patients and their families are going to enjoy many hours of joy and entertainment from your loving donations. This is only a third of the books we collected, with two more full boxes of books!

 

 

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.

New Year's Resolutions

Six months--the amount of time since I last posted. Shame on me. It is my New Year's Resolution to post more this year. Once a month is what I'm shooting for. How about you? Have you got any goals for 2014? Lose weight? Get organized? Save money? All of the above?

___    ___ Check Yes or No

Determination. That is the way to get it done. Just as I am determining to post more here.

While Emma's cancer journey is over, life after cancer continues, and that stinking cancer has definitely left its effects on Emma. I have a few things to say about that, so stay tuned. And thank you for stopping in.

Worry Wart

When I was young I used to listen to my mom rant and rave about all the things she worried about. My brother. My sisters. Her brother. Her friends. Burglars. Car accidents. Nuclear disaster (okay, maybe not that last one). I swore to myself that I would never be a worry wart.

Fate laughs in my face now that I'm an adult. My fears aren't quite the same as hers were, at least that's what I tell myself. I worry about every bruise on my children's bodies. I worry about every stray fever that has no other symptoms. My youngest has been tested for cancer three separate times now, just because I couldn't stop worrying. Poor kid.

Cancer isn't all I worry about, though. The other night I watched a news report about young children being abducted from their beds while they slept. Guess who didn't get any sleep that night? That's right. Me.

So maybe I have turned into a worry wart after all. I do try to overcome it. One way I do that is through repeating comforting things to myself. Here is my favorite:

Philippians 4:6 "Be careful for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made unto God."

 

How do you stop your worries?

Life After Cancer

A few years ago we were at a beach retreat for families living through pediatric cancer. Every morning the parents met in a form of "group therapy", and one of the parental sets was a mom and dad whose child had already finished treatment. The mother talked about how hard it was to readjust to normal life. I remember thinking, at the time, that I didn't understand what she meant.

I understand now. It's not so much adjusting to normal life as it is no longer having that carrot out in front of me. For so long we had one solid goal--get Emma through treatment. Now there is nothing, at least nothing so concrete. I feel a little lost without my carrot.

Crazy, isn't it, that I should feel lost without cancer breathing down my neck?

If I had to wager a guess I'd say this is pretty common for all walks of life--be it getting married, having a baby, or finishing cancer treatments. You finally accomplish your goal, and then you say, "Now what?" I'm wading my way through this crazy life, but I am not alone. I have wonderful friends and family to help me along.

Have you hit a point in your life where you felt this way? How did you get through it? Suggestions welcome :).

Me Me Me!

I've heard it said that we live in a narcissistic society, and I am inclined to agree. No, I'm not saying everyone I know is self-absorbed. What I'm saying is that, through living in the world of pediatric cancer, I have become self-absorbed. For years there were many people who wanted to know all about Emma at all times. How is she? When does she finish? Has she been sick? It became second nature to just believe it was all about us. All the time.

Do I want to be a narcissist? Well, no. Do I want to believe it's all about me? Of course not. So I am working on it. I'm conscientiously lowering my expectations of people. I'm <trying> to speak less and listen more. I admit, I don't always succeed. But I am trying. It's a work in progress, and I'm afraid it's just a side effect of living through something "big". I have to believe that other people have dealt with this (at least that's what I tell myself to make me feel better).

But that reminds me of a song I learned in grade school. Have a listen, if you're interested, and enjoy :).

More Life Lessons with Teacher Katie

You can't judge a book by its cover--this is something we all know. But do we do it? Probably not, right? I was reminded of this mantra a few days ago. I was at a gas station when a very nice car pulled up. To my surprise, out climbed three women, all wearing pajamas!

I chuckled and shook my head. My first thought was, "Why would anyone go out in public in their pajamas?"

As soon as the thought formed, I remembered something. Nearly three years ago now I made a road trip to Memphis for the very first time, and yes, I was in my pajamas. It wasn't because I wanted to be comfortable for the drive, or that I had just woke up, or that I was lazy or dirty. It was because I was so out of my mind, I remember literally looking around my room wondering what on earth I should put on. I grabbed the first thing I came to, and I climbed in the car to go.

I sure am glad no one judged me based on my decision to wear bed clothes out in public.

Of course, it's probably a good guess that these three ladies weren't involved in a life or death situation. But how could I ever know? It was a good life lesson reminder--you can't judge a book by its cover!

Lost Innocence

Everything we do in life changes us--either for the good or the bad. This post is hard to write, even though it's something I've been thinking about writing for a while.

Emma's cancer journey has changed her. It stole her innocence and left her fearful of everything. When she and Ashlyn play outside, Ashlyn runs into the trees, laughing and chasing butterflies. Emma stands back, near the porch, watching Ashlyn have fun. While Ashlyn tries the monkey bars, Emma does the safe thing and only sits on the swing. While Ashlyn proudly tries to ride a bike, Emma sticks to her 3-wheeled scooter because it doesn't wobble.

Have you ever seen a parent place a child on a counter top and instruct the child to "jump to daddy"? Most kids will leap without abandon. Not Emma. I don't think we could even bribe her into jumping. Not only is she fearful of everything, she is un-trusting of us as her parents. You see, we've had to put her through so many terrible experiences that she doesn't believe yet that we don't have something up our sleeves.

It is my hope and prayer that someday soon she will move past this, because while most kids are busy playing in their blissful innocence, Emma has none of that in her. It was lost long ago.

I didn't write this to sadden anyone, or to make people feel sorry for Emma. Instead, I wrote it to make you stop and think--what have you been through, and how have you allowed it to change you?

Pictures from Emma's Party

First, I want to announce the winner of last week's drawing for Alice Wisler's new book, Getting Out of Bed in the Morning. Cathy Seehuetter is our winner! Congrats, Cathy!


We had Emma's No More Chemo party several weeks ago, and I thought some of you might like to see the pictures. I'm sharing them here now. I hope you enjoy them!

 
 

 And here's the slideshow we played at her party. Enjoy!

Interview with author Alice Wisler

Today I'm very honored to have a guest with us. She is a fellow writer, one I met online. I found out about her son, Daniel, when I mentioned I had a child with cancer. Alice was quick to share her story and offer a shoulder to lean on if I should need it. She has written a book about dealing with grief, and let me tell you, this book is fantastic--whether your child has cancer or not! 

Katie--Hi Alice, thanks for stopping by! Can you tell us a little about your son and his diagnosis?

Thanks for having me as guest on your blog.

Daniel was a mama’s boy, a lover of Cocoa Puffs cereal and Toy Story, best friends with his older sister, and born with a great sense of humor.  He was three when diagnosed with neuroblastoma and four when he died on 2/2/97.

Katie--There is a sweet spirit that eminates from his pictures. A beautiful boy! How long after Daniel’s illness did you realize that writing was a good outlet for your emotions? How did you cope before you came to that discovery?

When Daniel was in the hospital undergoing treatments for his malignant tumor, I was glad to have the companion of my journal.  When he died, I needed to write out my anguish more than ever before. My heart was broken.  Writing saved me.

Katie--I can understand that. Many people have encouraged me to write about my own experience, but I haven't found the courage to do that, other than this blog. When did you know that you wanted to write a book about grief, and how did you come to that decision?

Ever since Daniel’s death, I wanted to create a book about the journey of loss.  Although I wrote numerous articles on losing a child to death, the book didn’t materialize until later. Getting Out of Bed in the Morning:  Reflections of Comfort in Heartache stemmed from my own faith walk on this journey as well as from what I’ve learned about writing through heartache. I think I needed time to develop my new relationship with God—when Daniel died my old relationship seemed distant and I didn’t feel God at all. In fact, I felt abandoned.  Over the years, I was able to cultivate a new song, so to speak (Psalm 40:3).  I realized the strength God is when He sustains us on our journey.  He doesn’t take away our agony or situation, but He is faithful to give us what we need in order to travel over the rocky path.

Katie--Your faith is inspiring. What is your best advice for someone who’s dealing with grief (of any kind)?

Don’t try to skirt around it; you have to go through grief.  Weep boldly.  Don’t be afraid to question.  God can handle all your tears, your confusion, and your doubt.  Be authentic.  Don’t pretend.  That’s the best way to heal. 

Can you tell us a little more about yourself and your writing?

I grew up as a missionary kid in Japan and love sushi!  Now I live and write in Durham, NC and bake a lot of bread in my bread maker. I’ve written five novels—Rain Song, How Sweet It Is, Hatteras Girl, A Wedding Invitation and Still Life in Shadows.  All of them are Southern with recipes in the back, and all have an international connection as well as one to loss. I teach online grief-writing courses and all-day workshops locally as well as at conferences and seminars. I love speaking to groups from my Broken Psalms presentation—about how God sustains us in our circumstances (themes from Getting Out of Bed in the Morning).  I have three blogs and one website:  http;///www.alicewisler.com.  And oh, I really like going out for sushi.

 

Thanks for stopping by, Alice! I strongly encourage you to check out Alice's book Getting Out of Bed in the Morning. It is available here! BUT WAIT! If you would like to win a copy of Alice's book, then simply leave a comment and I will choose one random commenter as a winner. Make sure you leave a way for me to contact you (i.e. your email address, etc.). Entry will be closed on Monday the 18th.