Monday, June 24, 2013

Benjamin Morris Updates

Hey Friends! I'm reclaiming my personal facebook page and will be posting all of Benny's updates here. I'm doing this for a few reasons:

1-Those who know me, know I like my privacy. After the Children's Leukemia Foundation posted Ben's pic last Monday (so cool), I got ~30 friend requests from strangers. I like for people to hear about Ben, pray for him, and to spread awareness about children's cancer. I don't like for strangers to know about everything (and everywhere and everyone).

2-I have a crazy neighbor.  Time to adjust the privacy settings back to strict.  Remind me to tell you this story next time I see you. :)

3-Some people (like friends of our parents and grandparents, colleagues and their friends and families, and entire congregations of churches we have never visited) have been following us and praying for us since February. They don't know me or Mike. This is a way for them to stay in the know. These people are our angels. 

4-I wanted a way that Mike, mom and dad, and Richard and Kathy could post updates when I am too tired/sick/out of commission to do so. We are about to enter a phase where Benny will be hospitalized for inpatient care every other week. It's treacherous. But we have all pulled together and worked out a schedule so that I can work for most of the times he inpatient. They can all post in one place now!

5-I've seen how successful the Team Emerson page has been. Team Emerson has been an incredibly hopeful and happy place to "visit" each day. I was so afraid a page dedicated to Ben's illness would be a terribly sad place.  But Team Emerson has shown me that positivity, joy, and even humor is possible.  The Poindexter/Meredith Family is a huge blessing to us. (If you haven't "liked" their page yet, please do so. Cancer is evil, but it brings us all together in a special way. Love abounds where evil exists.)

6-I wanted to provide an opportunity for my personal facebook friends to opt out of pediatric cancer. I talk about it a lot. And it's freaking sad. And the constant reminders bum people out or take a toll, and I get it. Really. I totally get it. Now we can be friends and participate in each other's world without being bombarded with seriously sad stuff. 

Thanks everyone for liking this page! 

Sunday, June 23, 2013

8 Things I Have Discovered So Far

It's been an incredible journey so far and we're nowhere near done.  But here's 8 things I have discovered in the last three months.

8.  Why not us?  Instead of why me? Why us? Why him?  I have begun to turn that around.  The odds are not in our favor.  But it's not a 100% death sentence, so that means SOMEONE out there survives this.  Why not us?

7.  Just keep swimming, just keep swimming, just keep swimming swimming swimming.  Oh the things Pixar has taught me.  Sometime you just have to go through the motions.  When that time comes, it helps to hum a happy tune.

6.  The alternative is unacceptable.  Period.  So I hold his little arms when getting poked.  I make family, friends, and strangers alike sanitize. I make co-workers send me an e-mail instead of walking 20 feet to my desk if they're sniffly... just in case.  I keep a ziploc baggie with a doctor's note and facemask in it just in case I get pulled over, so the officer won't freak out by our masks (and the necessity for him/her to wear one).  I sign documents that state that I am aware that the "medicine" that they are about to shove into my child's blood is toxic, and might kill him. I do all of this stuff because I must.  Because the alternative is unacceptable.

5. I am a crazy person, and that's okay.  Those who love me, understand. Those who don't, well... point and laugh. I'm good with either of these scenarios.

4. I am surrounded by lovely people.  Maybe it's because I am in the Midwest/Bible Belt/relatively small town.  But the kindness of the people who surround me is downright weird.  I thought the world was going to hell in a handbasket!  It's all over facebook 24/7!  (Thanks a lot, Obama.) But that is simply is not my experience.

3. Don't sweat the small stuff.  Nothing like cancer to provide a healthy dose of perspective.  Oh, that waitress screwed up your sandwich?  Dude... it's a pickle.  Flat tire on you way to an important meeting?  Dude... send a photo text to your boss and then work on your tan while waiting on OnStar.  After cancer, everything is "small stuff."

2.  When in doubt, laugh.  And try to get those around you smiling as well.

1.  Don't eat hospital food... ever.  You WILL pay the piper.

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.

Tuesday, June 4, 2013

May, Part One

Wow! What a month! May went excruciatingly slow and mind-blowingly fast all at the same time! Here are the highlights: •

It was super cool!

  •  May 6: My dad finished assembling the new playground (complete with a cool new fence)!

  • May 7: Successful day of chemo and still CNS1 (negative for leukemia in his central nervous system=no radiation=lower risk of long term side effects)
Certain long-term side effect: being spoiled with Oreos on command. Okay... he comes by that honestly.

  • May 11: Blood Transfusion 

  • May 12: MOTHER’S DAY! 

  •  May 15: Bartlesville MOPS put together these awesome games for Ben for when he is in the hospital. It makes the trips so much better/easier/FUN!