Wednesday, May 29, 2013

May is Brain Cancer Awareness Month


I suppose I'll just slide in on the tail end of this. Better late than never, eh?

I could bore you with statistics about brain cancer.  (If you are interested in this, click on over to my "About" page, and from there on to the American Cancer Society.) Or I could beg you for money to develop cures.  But instead, I'd like to take this opportunity to share with you how you might support a family with a cancer diagnosis in their midst. I think that this would probably be much more applicable, and hopefully more helpful, for your everyday life.

Ten Ways to Support a Family that has a Cancer Diagnosis


1. Go ahead and ask...


With a tube coming out of her nose, Charlotte used to look, well, a bit different from most kids.  It's okay to ask questions.  Here are some of the most tasteful questions that I've been asked.

"Tell me about your child." Okay, not a question, per se, but hands down one of the most compassionate statements that I've received.  This covers just about anything that the loved one wants to share.  For me, that's just about everything.  But other parents might not be so open.  

"What is her diagnosis?"  Don't ignore the elephant in the room which is the tube in her nose (or the wheelchair, or whatever else.)  Just ask sweetly.

"What is her prognosis?"  This is a very polite way of asking, "Is she going to live?"  It's important to be polite period, but it is also particularly helpful to use big words if young children are within earshot.  Don't be surprised if the answer is one thing one day, and something very different the next.  During Charlotte's course, we've thought we'd bury her within 3-month's time, then we thought the chemo might work, then we thought the chemo was working and curing her cancer, and now her last scan showed more and more cancer, so her future is, again, up in the air.  Don't think we're being dishonest or exaggerating; just hop on the roller coaster with us.

"What is the current game plan?"  This is a great follow-up question to the previous two.  The answer will explain what treatments are currently going on and how busy the family is with doctors appointments, etc.

Lastly, while Charlotte does have brain cancer, she also has a BIG personality.  Ask: "What does Charlotte like to do?"  Because she is far more than her cancer...


 2. ... And then listen.


   Don't be afraid of the uncomfortable answers.  Don't fear the bad news.  Just listen and help your friend process what is happening.
    I call one of my dear friends after almost every appointment at Duke.  Just talking to her about the medical stuff helps me process what is happening, as well as what to do next.  Even though she does not have a medical background, Laura offers a listening ear, and letting me think aloud helps me work out Charlotte's medical care.  


3. Fix a meal.


My friend, Wendi, is a hospitality genius.  Here's how... she called me one day with this message: "Hi Lauren!  I just made you a meal and am wondering when I can bring it over.  No rush if you are busy; it's in the freezer, just waiting for you whenever you are ready."  Get it?  Let's stop saying, "Let me know if you need anything, okay?"  Just make it, then ask when you can bring it over.  Because the truth is, most of us are too proud to ask for help out of the blue.  Need to organize a group for ongoing meals to a family?  Mealtrain it.  Do you live out of town?  Mail them a gift card for take-out. (P.S. Like my loaf?  Find the recipe here.  Yummmm.)



4. Plant their garden.


Melissa didn't ask.  She just did it on a day when she knew we'd be out of town and couldn't protest.  And I am so very grateful.  Do you not like to garden?  Then do something else that you love and are good at.  Friends have been so kind as to paint my toenails, babysit my children, give my kids a free farm tour, and cook meals, among other things.  What are you good at and what do you love doing?  Well, do that  for your friend.  Bless them with your giftings.  Especially if it's an "ordinary" thing like gardening or cooking.  With cancer taking over life, it's usually these "everyday" things that slide in our homes. (Or "outside of our homes" which must drive the neighbors crazy...)


5. Gift them in their love language.


   Maybe it's just me, but cancer has a very isolating effect.  Some friends don't stick around.  Some do, but they are still incredibly busy with their own families.  I get that.  And still, sometimes I feel quite lonely and as though people have forgotten.  Until I get a gift.
   I have come home to lovely fabric on the doorstep and have cut into it within just a few days.  Think: what would bless your friend?  Does she have long trips in the car, shuttling the kid to doctors' appointments?  A book on CD would be great.  A new magazine subscription to read while waiting for the doctor would also be welcome.  Are they inpatient, living at the hospital for weeks on end?  Mail them a book or gift cards for a local restaurant (hospital cafeteria food gets old real fast).


6. Cancer affects the whole family... Be sensitive to the other children.



   First, watch what you say in front of them.  For our part, our kids know that Charlotte has a brain tumor, cancer, and is disabled.  What they don't know is that this cancer might kill her.  Why?  Because right now, Charlotte is alive and is doing well.  There is no need to burden their little hearts with such weighty matters - yet.
   Second, ask how the other children are doing, too.  Sometimes when we run into folks, they ask how Charlotte is doing.  They say "hello" to her only.  And they act like our other three children don't exist.  This is very discouraging.  The reality is, we go through periods of intense stress in our household.  If Charlotte is inpatient, then my husband and I live at the hospital with her and our other children are thrust on relatives.  Or if we get bad news, then we spend a few days crying.  And the kids pick up on that.  Some days, all I've had time to do is dispense Charlotte's medications.  So, please include the other kids in your greetings and in your gift-giving - they are more affected than even I will ever know.


7. Reach out and Stay Connected.


   The internet is this funny little thing where you can read and read and feel like you are connected to me, but I might neither know you personally nor the fact that you are even reading.  Even good friends of mine can feel like we are staying connected, though I don't really know anything about their life.  So when your friend updates their Caringbridge/Carepage site, drop them a little note.  Celebrate their good news.  Sympathize their bad news.  (Listen, I am the first to admit my diagnosis: foot-in-mouth syndrome. So I'll just help us all out by saying that, "I'm so sorry" is never the wrong thing to say.)  
   Even better, do like my friend, Jillian, and send a full-length email.  Or really go the distance by breaking out pen, paper, and 46-cent (what?!) stamp.  We love to get out of our little cancer bubble and hear about all the happenings in your lives, too!


8.  Respect boundaries.


   Offer your medical advice once.  Then respect the family's decision, and drop it.  Why?  Because a lot of this is gray, Baby, and we're all just doing our best.  The thing I've learned is: Doctors say that they've been "practicing medicine" for "x" number of years. That's right... "practicing."  Because there are very few cases that are black and white, cut and dry, take this medicine and be cured.
  Also, just a reminder: don't go visit a friend on chemo if you are sick, or even appear to be sick.


A few team members at this year's AAU event.

9. Be involved in their "cause."


   Do what you love to do, and make it a fundraiser for their cause.  One of my neighbors hosted a jewelry party, and our former church did a dessert auction.  I quilt and gratefully accept the quilting skills of others.  Short on time or skills?  Nothing says, "We still care and want to help," like cold, hard cash.


10.  Give a "medical gift" to those with a medical need.


   Donate blood.  Charlotte has had so many blood transfusions that I've lost count.  If you are able, donate blood.  Hey, free cookie!
   Donate cord blood.  If you are pregnant, or might be in the future, then please consider donating the blood from the umbilical cord.  This is a procedure in which, after giving birth to your baby, a medical professional will collect the blood from the umbilical cord and store it for future use.  I did not bank any of the blood of my first three kids.  Why?  Because banking cord blood privately does cost thousands of dollars.  So I thought it was something "rich" people did.  Also, in the general population, the odds are poor that the blood would be used for curative purposes in one's immediate family.  (Who ever thinks it will be their kid with cancer?)  Furthermore, in my pregnancy books, I had read that the American Academy of Pediatrics discourages privately banking cord blood for use in the immediate family.  What I did not know, is that the AAP highly endorses publicly banking cord blood.
   To learn more about the why and how of cord blood banking, visit Be the Match.


One last thing to note is that it is so helpful to be offered support at every step of the journey.  Many people reach out right at the time of diagnosis, or maybe at the time of a major surgery, but the truth is, trucking along day in day out for years at a time gets tiring.  So don't forget about your friend on the ordinary days.  They'd love to hear from you!

Alright, stepping down off of my soapbox now.  (I hope that wasn't too bad...)  Now it's your turn to chime in... If you are a family living with the stresses of cancer or another long-term illness or special need, what has helped you?  Or if you've been on the giving end of things, can you share what you've done that seems to have been particularly helpful?



12 comments:

  1. Beautiful post, as always! So blessed to be near your family. We love all of you very much.

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    1. You are so sweet! Of course, I should have written, "Welcome my oldest two kids into your homeschool every Wednesday for months and months on end," but that wouldn't be too applicable to too many people... Still, you're the best!

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    2. LOL! We are BLESSED by your beautiful children on Wednesdays!

      I think these are all wonderful ideas of how to help.

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  2. I just LOVED all these ideas. Your honesty & specificity is truly helpful! What a blessing that you took the time to write these out! Especially for those of us who want to help so very much but are not sure quite how. Love you so, so much! AND I LOVE the pics of your beautiful babies - all 4 of them!

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  3. Such simple, loving, truth! Thanks, Lauren!
    You are such a beautiful woman.

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  4. Excellent and your babies are beautiful! Loved seeing the picture of all of them.
    Very practical advice from inside the cancer zone to those living on the outside.
    I hope many read such helpful advice...

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    1. Thanks so much for your encouragement!

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  5. good stuff Lauren.....miss your little family hug and give all of them elephant kisses for me.

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    1. Hi Leigh! We miss you all, too! "Elephant kisses" - ha! You are so funny to remember that :)

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  6. My cousin, Zoe Earlywine, had a very rare form of brain cancer and it was diagnosed when she was 6 months old and she is now 6 and one of only 10% that has survived her type of cancer. She was the poster child for Seattle Children's Hospital a couple of years ago. Her face was on all the billboards across Seattle. She is a climber(make a wish granted her this and installed climbing equipment in her bedroom) and more importantly, a survivor. She has many issues, and we are working to correct these issues. Pray for us and for her, Zoe Earlywine and her family. God Bless and God Speed! She is a precious gift from God and we love her dearly!

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    1. Thanks so much for sharing this, Candyce! I just watched "Up Close with Zoe" on YouTube... what a gem and a blessing your sweet cousin is! God bless you all!

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  7. Love Charlotte's smile in the pics..Grace ~

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