An eventful day

Yesterday turned out to be an eventful day.  I got a phone call from my Dad, who had gone back home for a while.  He told us his wife’s granddaughter, Kaylee, had been severely burned in a campfire accident.  Apparently, one of the kids at the bonfire had thrown a large log onto the fire, which in turn threw a large burning log onto Kaylee.  Somehow, she had the presence of mind to jump into the lake, and the kids put wet towels on her.  She was burned on her thigh, side and chin and sent to the hospital.  It looks like she will make a full recovery, minus some scarring.  We are keeping her in our prayers.

Then late to clinic for Lulu’s spinal tap and chemo, we were bumped back.  This meant we’d have to wait even longer before she could eat.  After a minimally dramatic port access, we waited for her blood work to come back.  An announcement came over the loudspeaker calling out a CODE BLUE on the H.O.T. unit.  Oh no.  I thought I recognized the room number.  Maybe it’s familiar because we were right next to Bo’s room last time?  That’s it, right?  I asked the nurses and doctors, realizing full well they couldn’t disclose information about another patient, and I was putting them in an awkward position.  I continued to ask anyway, hoping to see some glimmer of confirmation or denial in their eyes.  Let me tell you these guys would all make for great poker players; not a twitch or a tell to be found.  I texted his mom, but no response.  Must wait.

Lulu’s ANC was only 250, so there’s no way we were starting treatment that day, and probably shouldn’t have set up a play date and dance class for the week!  I practically threw a bagel at Lu, who started devouring it.  Sometimes it still seems strange to see her eat!  After exam, learning the new protocol to come, and getting prescriptions called in, we are told we can go, and come back Monday for treatment.

I knew I was on the visitor list for Bo, so I casually asked at the security desk which room he was in.  My fears were confirmed.  Shit.  He’s been moved to ICU.  We later get a text from his mom that he’s had a seizure and they are doing a cat scan.  They’ve found something in his brain, but have to do an MRI to find out what.  I can imagine the terror his mom and he is feeling.  I was praying he might be sleeping during all of it.  They have to wait to find out the results, and are hoping it’s not leukemia in his brain.  Oh, that waiting for MRI results … brings me back to when Lu was so sick when her appendix burst, but we didn’t know yet.  Waiting is absolute agony.  I got another text at almost 10:30 pm from Bo’s mom sharing the news that it’s a complication from his medications that cause extremely high blood pressure.  It may be reversible, and they are treating it.  We were relieved, but still concerned, and continue to send them as much strength as possible.

Most of you don’t know Bo personally.  But I share his story because I feel like he’s everyone’s child.  He has the kind of beautiful spirit that makes you feel like you know him, he reminds you of your own precious child, or the one you hope you have.  He’s kind, sweet, strong and loving.  These kids really are all of our children.  I used to think this stuff happened to other people.  How naïve, and how superior!  It really can be any of us, at any time.  We’re all in this together.  If this sounds a bit maudlin or preachy …  I can’t help but be moved to by this year and the events that continue to unfold.

Lulu was shaken up as well, and I wish I could protect her from this madness … and that I would have been better able to hide my own emotions.  We are careful about what we say, but these situations have become a part of our everyday lives.  She said she was praying for Bo, and worried about him.  She wants him to be able to go home soon.

We are still trying to put emotion into action and had another successful lemon-aid stand, this time at our church.  We raised $600 in 2 hours for children’s cancer research.  Thank you for those of you who donated online as well, that helped a lot!  Jazz Pharmaceuticals donated $1000 to the MACC clinic at Children’s on our behalf, for Lulu’s photo shoot.  Many of you are raising money in races, biking, walking, running, swimming, and we are so touched by your efforts, and proud that you wear LULU on your shirts as you race.

Thank you, also, to the wonderful doctors and nurses at Children’s.  I neglected to mention Lulu had a party at clinic on her last day of delayed intensification.  It was her official last day of shots, and Bonnie, along with the other nurses, made a huge sign for her with balloons, candy and presents to celebrate.  THANK YOU.  I’m continually impressed with the care and thought you all put into your jobs.  You are still by our side for every scream, every tantrum, every hug and every giggle.  I don’t know how you can deal with the love and the loss your jobs entail, but I am grateful to have you.  And humbled by the strength you have to keep on loving, despite the risks to your own hearts.

Thank you all for reading, acting and sharing your hearts with not only Lulu, but with all of the Kate’s, the Joshua’s and the Bo’s of the world . . .

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

Normal is underrated

Normal.  It’s a word I’ve never really identified with.  Growing up as an overachiever of grand proportions, I’ve always shied away from words such as this. I’ve never aspired to flirt with Normal, or tango with Average, and can hardly utter the word… Ugh… Mediocre.  Routine? – the bane of my existence, and solid was a word I’d like to hear only in reference to my backside.  I always pictured myself living a more glamorous existence, chasing the tail of life, and filling it up with adventure.  I’ve discovered, however, that normal is relative, and certainly not bad.  In fact, I would even say I now crave normal.

This past week was surprisingly just that, with a daughter who was functioning as a wonderfully average five-year old.  Lulu is off of chemotherapy for almost two weeks, and our regular-ish little girl has reemerged.  What most people find to be ordinary, we now find extraordinary.  Her fighter blood counts were so high we were able to do crazy things like go to the grocery store!  We got ice cream one day, and went to a park – WITH other children!  We sat at the dinner table together and shared a meal where Lulu actually ATE!  It was only yogurt and one bite of chicken, but we could have been dining at The Four Seasons, it felt so good.  I had a business meeting that I’m not sure how it went, but who cares!  It was a normal thing to do, something I haven’t done in 6 months.  I met a good friend who is going through a hard time and I was able to listen to someone else’s problems. Wonderful! My dad is in town and we actually went out on not one, but two dates!  I mean, come on, this is pure gluttony.

The icing on the cake was a visit to Lulu’s K4 class.  She had only attended for 2 months before her diagnosis, but her school has been surrounding us with love ever since.  When we entered the classroom, a hush fell over the room.  The kids were lovingly and cautiously instructed not to touch her due to exposing her to germs.  We hadn’t been able to tell the teachers of her improved status for this week.  Lulu was beyond excited, bouncing up and down, overwhelmed into smiling silence and eyes so happy they squeezed almost shut.  Gingerly, the little ones approached.  Jimmy, my dad and I watched from a distance, letting go of any control over the situation.  One little dark-haired boy came up to her and quietly said, “Hi Lulu, you look just beautiful”.  Wow, thank you God.  The kids were curious, but completely respectful.  I wanted to grab each one of them and squeeze their little cheeks off, then send a letter to their parents thanking them for raising such gems.  Her principle read a story to her class as Jimmy and I held hands, being sure to keep the other hand free to wipe the tears that were escaping rapidly.

Yes, Normal is relative. I remember when Lulu had an undiagnosed ruptured appendix on top of her leukemia, which caused her excruciating pain and multiple surgeries.  There were times when we thought to ourselves: can’t she just have normal shitty cancer?   Bo, a boy we met in the hospital during this time, is one of the sweetest, most kind-hearted boys I’ve ever met.  He was recently given his walking papers; remission.   He rang the bell at clinic, meaning his fight is over, he’s won, and his new normal can finally begin.  We felt lucky to be there that day.  He had adopted Lulu when she was at her worst.  Bo saw the little fighter in her, and just took to her, even when she was too sick to even know he was there.  He’s been her big brother from down the hall, making her little presents and always keeping her in his prayers.  Bo just celebrated his 13th birthday yesterday, and his present?  He found out his leukemia is back.  Please pray for him and his family. Normal has now moved into divine.

-and, Hey Normal, we know we only have you committed for two more days, but please stay for a while… and visit Children’s often.

A.L.L. of Us