SUNSHINE AND RAIN

SUNSHINE AND RAIN

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(Lulu & Mrs. B)

Hello Friends,

Wow, it’s been almost a month since I’ve written. You’ll see why after you read this entry …

Much like the weather in the Midwest this year, our lives have been full of rainbows, storms, sunshine and rain … sometimes all in one day!

Ours began full of hope, as Lulu was set to ‘graduate’ from Kindergarten. She was SO excited, and had been chattering on and on about the program all week. She was going to sing choreographed songs with her class, and give a little speech along with a few other chosen students. She practiced her two lines diligently, and had them down pat before the big day.

Proud as punch, she was the last and tiniest to march down the aisle, chest held high, with laser-like focus and broad grin. The program was cute beyond words, especially the dance-moves! I must admit, I used to think Kindergarten graduation was kind of a joke … really, we need to graduate K5? This year, however, there was cause for celebration, pomp and circumstance. Lulu missed almost all of K4 last year, having spent most of it in the hospital. This year she missed 45 days of K5, yet graduated with a perfect report card and took home the most coveted trophy; the Eagle Award. This award is given to the child in each class who demonstrates the best spirit and behavior all year. – No mean feat while on daily chemo and monthly steroids!!!

I’ve never seen Lulu so proud of herself, holding her trophy and her teacher who has become part of our extended family. It was the perfect distraction after what had been a horrible day. My husband’s father was scheduled to move into a hospital 5 blocks from us when he passed away graduation morning. Jimmy’s mother was visiting us when she got the news, and I recognized the awful sounds emanating from her room as the phone call came in. She had known Mike since she was 15. Jimmy was on his way back from an out-of-town job, and was devastated. I think the whole family was in shock, and the impact of Grandpa Mike’s death was felt more deeply than any of us would have predicted.

Somehow, Jimmy sat down at his computer, and over the next few days wrote the most thoughtful, respectful and historical eulogy I’ve ever heard. He read it aloud through sobs and tears, but each word was heard and felt by all present. I’ve always had a lot of respect for my husband, but his words, and grace surrounding this event raised the bar. He even arranged and led a Harley caravan to all his father’s favorite haunts. The funeral concluded with full military honors and a 21-gun salute and formal flag ceremony; well-deserved after fighting in Vietnam, a war that effected Mike and his family ever after.

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Lulu spoke of death with an understanding that only one who’s lived so close to it can. She asked if Grandpa was up in heaven with Bo now, and was content my soft yes. She spoke of my mother, whom she’d never met but feels a connection with. She’s often talked about building a time-machine when she grows up, and the first thing she is going to do is bring back my mom, and Bo. Now Grandpa too.

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We are all getting back into our summer routines, Lulu and Max in camps off and on, Jimmy and I hard at work. I’ve gotten so used to giving her oral chemo that I can tell the bottles apart by sound alone: Methotrexate is a high-pitched light sound like tic-tacs, 6MP has a duller, lower sound, and Bactrim is low but has more of an echo when shaken. I’ve only broken down once recently, when I had to wake her to give her pills, and one hung from her lip as she slept. I wondered what am I doing to this poor baby girl? But it must be done.

She’s tolerating things extremely well, only occasionally nauseous and enjoying the summer quite like a regular kid (full head of hair and all!). We are counting down the days to March 2014 when we can ring the bell at Children’s, meaning she is cured and finished. There will likely be more unpredictable weather along the way, but we’ve found out our family is remarkably resilient. Thank you all for being a part of our umbrella.

Love,

a.l.l. of us

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Update and Lemon-Aid tomorrow

Hello,

Just a quick update today.  We will be doing another lemon-aid stand at our church, all proceeds go to childhood cancer research: Sunday (tomorrow) July 15 from 11-1.
To donate to Love for Lulu:
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=HWVDDTBWNFYDE

Otherwise, not too much to report.  We’ve had a week off of treatment since Lu’s counts didn’t make it to start Maintenance Treatment.  We can tell some drugs are leaving her system and she’s showing wonderful signs of her true self.  She’s still having some tantrums, but after speaking with some of you who have 5-year-old girls, it doesn’t sound as out of the ordinary.  – or you’re just trying to make me feel better (you are).  My favorite line from Lulu this week came after I asked her to just TRY not to overreact to every little thing.  She responded very dramatically, hands waving in the air: “But Mama, I CAAAN’T!!!  It’s just how I WORK!!!”

Keeping it real as always, Jimmy and I had a date last week where we ended up ‘discussing’ (as my parents always called it) during the whole thing!  We discussed at the first restaurant starting with politics, on through dessert at the next stop. We went into everything we haven’t been able to cover in the last 8 months… just another way cancer affects a family; little time to communicate.  I guess we got it all out in one night, and we were able to tease each other about it the next day.  Now we can’t wait for the next date :-).

Jimmy’s mom is visiting after having what we hope is successful back surgery, so we have a full house here.  We are looking forward to setting up playdates for Lulu.  Her counts should be good enough from here on out to enter a normal-ish zone where she can play with healthy kids! Travels are ahead for hubby, and work is heating up for me so playdates are extra helpful, and heck knows Lulu needs to play with someone other than us!

I’ll write more soon, lots to do this weekend.  Hope to see you drinking lemonade tomorrow!

Love to you ALL

Dun Dun Duuuuuhnnnn . . . Delayed intensification.

We just began the toughest round of chemo for Lulu yesterday.  There’s a reason for the name:  Delayed Intensification.  It’s just loaded with all the ingredients for an intense drama including 9 kinds of chemo, and, ooh our favorite thing:  steroids!!!  I don’t know how many of you have a spirited 5-year-old girl, or have met one, but ours walks the razor’s edge between charming and bratty on a daily basis.   She’s a creative force, so full of life it seems impossible that it could be contained in this 35 lb. package.  She also has the wit of a teenager; including the sarcasm.  Even the word Mom can be delivered with more varied intention and meanings than previously thought possible.  Depending when you meet her, she will sweep you off your feet and climb into your heart in the most charming, playful and engaging way, or drive you crazy with endless chattering and obnoxious demands for attention.  So … let’s put this on steroids!  Based on our last experience, I will be calling often, tag-teaming with Jimmy and Grandpa if he’s still here, telling lots of stories-that-will-be-funny-later, and planning my occasional escapes to gather myself enough to go back into battle.

That’s the easy part.  The 9 kinds of chemo are more challenging.  I’ve been running through a lot of emotions based around this leg of treatment.  I’m hopeful since it’s our last giant hurdle to cross before starting maintenance for 2 years, and it feels like there might actually be a light at the end of the tunnel.  The hold-your-breath scary part is there are no guarantees.  This feeling of unsure footing has been amplified by recent events.  We made a few friends on the H.O.T. (high risk) unit during our long stays at the hospital.  I was just thinking about how well everyone was doing, and how lucky we all are.  It starts to feel like you’re having coffee or beers with your friends, and forget you have children who are all literally fighting for their lives.  I told you about Bo, who had the rug pulled out from under him and his family when his leukemia came back.  He and his mom are at the hospital again, finding their strength and gearing up to fight once more.  We have another friend who is a mere couple of weeks ahead of Lulu.  She’s almost 4, and one of the cutest things I’ve ever met with huge blue eyes surrounded by thick wings of black lashes.  She and Lulu hit it off immediately.  After doing as well as our little one, she is suddenly in the fight of her life.  The drugs, not the disease, are tearing her tiny body up.  After starting delayed intensification, the toxic drugs broke down her intestinal wall, allowing bacteria to enter causing typhlitis, and her lungs have filled with fluid from an unknown origin.  She is on a ventilator in ICU, just had surgery and I can’t stop crying for her.  I’m so worried, and hope she finds every bit of little girl magic and chutzpah to pull through.  I find myself wanting to hate these drugs with every ounce of my being, but I can’t.  If they don’t kill her, they will save her (and my daughter’s) life.

I haven’t really asked the big WHY question too much during this time.  I am now.  I know both of these families have as many people loving and praying and thinking of them as we do.  I’m not overly religious, but I do believe in a God, a force and an energy that created everything.  I’ve heard, “this is God’s will” and I just don’t buy it.  I don’t think God would ever choose to take one child’s life, and save another.  It can’t be.  Can it?  I’m not losing faith, I’m just wondering.  Maybe God doesn’t really work on that level?  Maybe we were all just given free will and we’ve messed up this earth so much that we are creating all these diseases of the body, and mind.  Our food and environment polluted … Cancer; rampant, cure; toxic.

I’m feeling pissed off, confused, scared yet hopeful.  Maybe it’s been left in our hands with God to guide us, not fix it for us.  If so, we need to change it.  Quickly.  We need to change the way we eat, purchase, process, work, live.  We need to start wherever we can, in big and small ways.  We must be part of the positive change, and not the toxic buildup.  We need to stop filling our minds up with entertainment that thrives on hate, food that poisons us, work that kills our souls and our earth.   I certainly don’t have all the answers and solutions, but I hope this will start a conversation.  Maybe if we begin with ourselves, we can create some peace within that can be shared with all.

Please send prayers, good juju or whatever you’ve got to Bo, Kate, Lulu and everyone at Children’s, especially the HOT unit.

Thank you,

a.l.l. of us