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!

 

 

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.

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.

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?

Dear God...

Dear God,

My name is Mother. I have a dear child you’ve given me, and this dear child is ill. She is so very sick, and yet she is so very small. She cannot fight this fight on her own, God. Unfortunately I cannot fight the fight for her.

There are tubes taped to my dear child’s body, God—tubes in her chest, tubes in her hands, tubes down her throat—so many tubes. She seems so very alone.

You are the creator, God. You could take this sickness away. You could take all sickness away. You are the great physician. Still, you choose not to. Why, God?

Please help my child, God. She is too small to fight on her own. She is your child, too, I know, and as her father, you surely love her more than I do. Please ease her suffering, and help her to persevere. You are the only one who can save her. I am putting my trust in you and your goodness. Please don’t let me down.

Sincerely,

Mother

 

Dear Mother,

I am your father, God. Yes, I know of your dear child. You see, I knew her before she was formed in the womb. I knew of the trials she would face. I see what you cannot—your dear child is special! I have assigned her a special task for my plan, one that only she can perform. She can reach hearts that you cannot. She can make an impact on souls that a healthy adult never could.

You say she is alone, but she is not. Surrounding her bed, and all those tubes, are angels. The angels hold back a dark tempest, but there is no need to fear. They are heavenly angels, and they are stronger than any tempest that illness can give. They are fueled by the prayers of your family and friends, prayers that haven’t ceased.

I am with your dear child, and I am not going anywhere. I know that you are afraid, but I can bear your burden. You may not see what tomorrow holds, but that is okay. Whatever my plan holds I will be with you. Never fear to bring your worries, your questions, or your anger before me. My love never fails you, and it never fails your dear child, either.

I hope to hear from you again soon.

Sincerely,

Your Heavenly Father,

God