Going public

As many of you know, our six year old daughter, Anna, was diagnosed with brain cancer in February and has been undergoing treatments since that time.  She will continue to undergo chemotherapy treatments for the next six months.  During her time in the hospital, Anna underwent major brain surgery and intensive radiation and chemotherapy treatments in addition to some out of the ordinary set-backs.  Anna looks and acts much different than most soon-to-be seven year olds, and she looks and acts much different than she did before she was admitted to the hospital four months ago.

However, she is the same Anna, even if she looks and sounds a lot different.  This blog post is my attempt to educate as many people as I can so they can help educate their families and children so that we can all work together to prevent any teasing that might occur in the weeks and months to come, not just towards Anna, but towards any kids who might be different.

Since her diagnosis Anna has been for the most part isolated from her peers and community.  Now that she is past the most intensive parts of her treatment and is living at home with us, she will be joining our family whenever possible wherever we might go ... to Culver's ... to the zoo ... to the park.  As much as we would like to protect Anna from any additional pain, emotional or otherwise, sheltering her until she has reached her full potential would not be in anyone's best interest.


Maybe I am trying to be a bit too controlling, but, as when Anna was first diagnosed, I think it's easier to be direct with everyone, instead of having awkward interactions with friends and acquaintances.  So we're just going to have to jump right in and do what we can to educate the world on Anna's condition and help her through this next phase of life. 

As Anna continues to re-enter "normal" life, we want her to feel comfortable and accepted for who she is.  We know that she will be stared at because, hey, she IS different, and people, especially kids, stare at someone who is different.  But once the initial "staring time" is over, we want Anna to be treated like any other kid.  We're doing our part to help with that at home, but we'd like everyone else to do theirs, too.  So here is my attempt to offer some advice for "Anna etiquette".

Basically, please interact with Anna as you normally would have done before this all started.  She's a kid and should be treated like a kid, even if she can't run and jump and play actively ... yet.

And here are some basic kid-friendly guidelines that you may want to share with any children you know who may have questions about Anna's illness and/or appearance:

*You can't catch cancer like you can catch a cold.

*Cancer doesn't make your hair fall out; the medicine they give you to make you better makes your hair fall out.

*The medicine they give you makes you not want to eat, so the doctors have to give you your food another way, that's why Anna has a tube in her nose right now.  She won't have it there for much longer, though.

*Not all kids with cancer are in wheelchairs.  Anna is in a wheelchair because of the kind of cancer she has.  The doctors had to do surgery in the part of her brain that moves her muscles so her body has to relearn how to use her muscles.


*Wheelchairs are tools, not toys or furniture.  Please treat them with the respect that you would treat a part of someone’s body.


Most importantly, please feel free to ask us questions.  We like sharing what we have learned and would rather people learn something new than be afraid to ask.  If we don't know the answer, mostly likely we know someone who does.

In our home, we have very open and age appropriate conversations about cancer.  It's real here and we live with it every day.  But we also have to laugh.  For example, Anna jokes with us that she won't have to go with Kate and I to get her hair cut for awhile because she doesn't have any hair :)

We hope that we have helped give our daughter a solid enough foundation to help her weather whatever social and emotional difficulties may come as she continues to go through her chemotherapy treatments and her rehabilitation therapies.  A book given to our family by our church's Sunday School several years back sums up our perspective pretty well.

Jesus Loves Me by Joni Walker

I don't look like other people I see,
But I know Jesus still loves me.
My hair is straight.
My skin is brown.
My eyes are blue.
My face is round.
My hair is red.
My face is small.
My skin is yellow.
Jesus loves us all.
My hair stands up.
My skin is white.
My nose has freckles,
and that's all right.
My hair is curly.
My eyes are green.
My nose is little.
My face is clean.
Jesus dies to take our sins away.
If we look different, that's okay.
Different faces, big or small,
It doesn't matter, Jesus loves us all!

(The best part about this book right now is that the very first girl pictured in the book is in a wheelchair.)

For those of you who have been following this blog all along, here are the prayers.

Thanksgiving

Please give thanks for the continued support our family is receiving!
Please thank God that Anna's blood counts are on the rise.
Please give thanks for all of the care givers, inside the hospital and outside, who are supporting our family.
Please thank God for the continued flexibility of Matt's job during this time in our lives.
Please give thanks that our family is all home together.
Please thank God for peace, strength, wisdom, patience, and healing.
Please give thanks that Uncle Chris had a successful ride today in honor of Anna!

Requests
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray that we are able to hire the right helper for our family soon.
Please continue to ask God to grant us strength, peace, patience, healing, rest, and wisdom.
Please continue to pray for all those who are responsible for Anna's medical care, both in the hospital and out.