Wednesday, June 19, 2013

So Your Kid Has Cancer

We learned on Monday that the daughter of some friends of ours was diagnosed with leukemia.  We're still waiting on bone marrow results to know if it's Pre-B, T-Cell, ALL or AML, and a host of other variables.

First of all, I am so angry.  We had counseling on Monday and I expressed:
"I am so livid. I'm beyond pissed.  And while I know it's not logical, the reason I'm mad is because the statistics for childhood cancer is 1 in 10,0000.  I don't know 10,000 people.  So in my head, no one I know is going to have to go through this.  I took this hit.  I carried this statistical burden for everyone I know.  No other Mommies will have to watch their babies whither."

Dr. Keith's response: "It's not right. It's not fair. But it still happens."

Other of our mutual friends have expressed a crises of faith.  If God is so, big, so strong and so mighty... why the hell do kids get cancer?!  (Sidebar: Don't tell people that Satan caused their child's cancer.  It makes you an idiot.)

Also this week, Ben was featured on the Childhood Leukemia Foundation's facebook page. It was pretty cool!  Lots of encouragement from strangers on a day I really needed to hear it was great.

But then I heard from Samantha.  Then I heard from 3-4 other moms who kids were diagnosed with ALL recently.  They all needed some help with the first weeks of diagnosis.  So I started to put together a list of all of the things a parent might need for the first few weeks after diagnosis.

***If you happened upon this page from a search result or on a link to other resource sites, I'm guessing your child was recently diagnosed.  I'm so sorry for what you are going through.  Comment or send me an e-mail if you need to talk or have questions.***

For hospital stays:
  • Button down shirts to easily access the port.
  • 3-ring binder with page protectors. They give you tons of printed paperwork for meds. They hand you a ton of resources.  Plus prescriptions. Plus instructions. Plus.... lots of paper.  
  • Notepad to write down instructions and list of people to thank and questions to ask the doctor or nurses.  Or doodle.  
  • Pillowcases.  Yes, hospitals provide these.  But one of Ben's side effects from the steroids was night sweats.  He went through 6 pillowcases a night sometimes.  It's just easier to have a stack to get you through the night.
  • Activity bags. If you have friends who are teachers, ask them to put together one activity that will fit in a gallon ziploc bag.  Pinterest people, I'm talking to you!  
  • A board game.  Because board games are awesome. But also because it gives people something to do when they come for a visit.  Childhood cancer is sad. But no one can be sad if they're playing a boardgame.  
  • Quarters for machines
  • House shoes
  • Instant coffee.  Besides putting hole in your stomach, I think the last time the coffee machine was cleaned on our floor was in the 80s.  It was just gross.  If you have a Keurig, go that route. Otherwise, just add water coffee and tea is your friends.
  • Koozies.  
  • A canvas fabric bin or two.  It helps to have a "catch all" and keep your room from getting out of hand.  "stuff" tends to accumulate.
  • Command strips.  So you can hang awesome stuff on the wall.
  • Low calorie snacks.  Steroids make your kid stupid hungry.  And you tend to be lethargic/inactive in the hospital. No one needs to gain a ton of weight.  
  • Yoga mat.  Hospital accommodations for parents are... lacking.  I did a lot of stretching and yoga and still ended up with back trouble.
  • CD/MP3 player or plug in speakers for your phone.  For nighttime and impromptu dance parties.
  • A calendar to transpose her protocol/roadmap/appointments on to.  They work in Day 1-29, not June 17-???.  It can be confusing.
  • Your sense of humor.  If you don't laugh about it, you cry about it. Choose joy.
So be thinking of Emerson Meredith, and her parents Josh and Samantha.  They are beginning an incredible journey that will test them to their core.  But they will succeed, just as Ben and me and our family will.  Because we must.

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