Silver Lining (plus recording of Lulu singing)

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Hello Friends,

Since my last entry, Lulu’s counts dropped even lower, which was unexpected.  We had taken her off of her daily chemo, but she was still getting Bactrim two days a week and methotrexate once a week.  The first is to keep her from getting infections, and the second is another chemo drug.  These proved too much for her already falling counts, and her ANC (fighter white and red blood cell counts) dropped into the low 100’s.  A normal ANC is over 1500.  Needless to say, she was quarantined until further notice.

I was 3 days into a healing cleanse, our winter launch was a few days later, and Jimmy was deep into work.  My usual response to an unexpected storm cloud like this is slight panic, wondering how I’ll work, what we’ll do at home, how I’ll get to the grocery store, etc.  But Lulu was absolutely thrilled to be on lockdown, and spend time at home.  Her attitude must have been contagious.  Instead of my usual coping through the 5 steps of grieving, I jumped right to acceptance.  There was something in her heart that reached out and touched mine in a way only a parent can understand.

We were instructed to take her off all medication.  She was home for 3.5 weeks.  The most interesting thing about this time, was watching my little Lulu return to me.  Every day she was off the medication, I could see the fog lifting.  Slowly but surely, her sweet spirit was fighting its way back!  The relief and joy in seeing the ‘real’ her again, combined with precious time together turned out to be the best Christmas gift I could ever have asked for.  I was falling in love with my Lulu all over again.  My little girl was still in there after all.

There was even a shift in her voice, which went from almost foghorn to tinker bell.  The OCD dissipated into near nonexistence.  Her babbling became less manic, and more bubbly: “Everybody makes up words Mama, China people, Mericans, even people who can’t talk!  They make up words with their hands.  You and me too, we make up words!”   She is fiercely funny, and can deliver a line in such a dead-pan way, you’d think she was a 25 year-old comedienne.  After asking her to clean up her art area (she’s since learned the word chaos) she says: “I just cleaned up this mess, am I the maid here?  I don’t think so.  I don’t want to have to clean this mess up again.  Good grief!”  You may be thinking she’s mimicking me here, but she’s not.  She ends with a knowing smirk on her face, fully aware of how funny her faux tirade is.

We watched girly movies, cuddled, made art instillations and stayed in our jammies for 3 days in a row, just because we could.  Jimmy’s schedule let up the last week, and he and the kids bedazzled and holidazed the house magnificently.  I didn’t grow up in a house where we decorated for the holidays, and I truly appreciate that Jimmy cares so much about making this a tradition for us.

Lulu returned to school late last week, just in time for her holiday concert.  As the three of us sat in the audience, I fought back the big ugly cry that snuck up on me as I watched her on stage.  There was my beautiful little girl with her newly sprouting hair, dressed in a green and black vintage-y dress, with a huge black flower in her headband singing her little heart out.  I thought back to where we were last Christmas, and where we are now.  The feeling of gratefulness washed over me as if someone had dumped buckets of warm water over my head.   Thank you, thank you, thank you God and universe for saving this precious soul.

The holidays are upon us, and we couldn’t be happier.  Maybe every cloud really does have a silver lining.  Maybe we can forget the misery but remember the lessons.  Maybe we can minimize the suffering and expand the laughter.  Maybe, just maybe, hope will reside in us permanently.  For now, maybe feels pretty grand.

Enjoy this audio clip of Lulu singing her Christmas song through the link below (If Cindy Lou Who could sing, this is definitely what she would sound like!)

Lastly,  I’ll leave you with a very important piece of advice from Lulu:

“Never, NEVER run with your hands in your pockets!”

http://chirb.it/g42rDv LULU SINGING CHRISTMAS IS A TIME FOR LOVE

Love, and Happy Holidays,

a.l.l. of us

LYRICS – Christmas is a Time To Love

Christmas is a TIme, Christmas is a Time, Christmas is a Time to Love

We often start to worry, and people get upset when things don’t all go right on Christmas Day

What we should remember, in all the push and shove is Christmas is a time to love

(repeat chorus)

Maybe things don’t sound right, or look the way they should

and maybe they’re not perfectly in tune …

It really doesn’t matter, let’s keep our eyes above

’cause Christmas is a time to love

(repeat chorus)

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A Little Nitty Gritty

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Hello Friends,

I’ve been writing about a lot of the bigger picture lately, so this update will cover some of the details on Lulu and the family.

Although she’s still doing well overall, we’ve had a bit of a detour this last couple of weeks.  Her ANC (basically, her immunity measured in blood cells) was rising to slightly beyond protocol.  The docs like to keep her counts between 500-1500 during Maintenance Therapy, to ensure that the leukemia doesn’t have a chance to come back.  Lu’s ANC was climbing into the 1600, then 1700’s.  To counteract this, they upped her chemo dose by 25%.  Unfortunately, this made her nauseous, and she started vomiting again Ugh, just pulling out the ol’ puke buckets made us feel a bit sick too. We added some more anti-nausea medicine to her regimine, which mostly did the trick.

But then we discovered that her ANC had been knocked down WAY too far.  The week of her 6th birthday, she had her usual in-patient spinal tap and IV chemo where they also check her bloodwork.  Her ANC was down to the low 100’s.  This basically meant she’s on lockdown until her counts rise.  She had been looking forward to, and talking about, her birthday party at Chuck E. Cheese for, oh, the last 6 months?  Some of the docs and nurses said we could probably go ahead with the party, weighing out the costs/benefits.  My gut told me not to, as disappointed as I knew she would be.  I couldn’t feel good about her having a fun party, but possibly ending up in the hospital the week after.

Bonnie and the nurses brought  a cake and presents to her in clinic, which at least felt like a bit of a celebration.  We also decided to make a quick trip to her school, after I had her teacher promise to flea-dip the kids in antibacterial gel.  We brought rainbow-colored cupcakes, and her class was beyond precious (see silly faces pic below)!  We couldn’t be luckier to have her teacher and school on our side.  They’ve been incredibly loving, patient and flexible with our ever-changing circumstance.

Lulu was more understanding than I ever would have guessed she’d be about missing her birthday party, but we were still so disappointed for her.  Her counts ended up not rising as expected, and the week after she was only in the low 200’s.  At least we knew we had made the right call to cancel her party.  This meant we’d also have to forgo Thanksgiving with friends.  But we made the best of it, instead, staying home and eating Jimmy’s delicious chicken with prosciutto over pasta.  YUM! We reminded ourselves of last year, when we spent every single holiday in the hospital, and counted our blessings to be together in our home this year.

Her OCD – like behavior continues to be an issue, and we’re doing our best with that with what we know and are learning.  It can be VERY trying sometimes and we try to keep our patience.

Max is continuing to excel in school and sports.  Luckily, he’s been staying healthy.  That is, until one Monday morning … Suffice it to say I was taken unawares when my son became suddenly ill on the way to school.  Well, he did tell me he didn’t feel well in the morning, but I pretty much told him to suck it up, eat some breakfast and get to school.  I regretted those words wholeheartedly a few minutes later.  After ALL the puke I’ve dealt with over the past year, you’d think I’d have emergency bins in the car.  I used to, and still bring them when Lulu has to travel, but my son is never sick!  He gets a bit carsick, but never actually GETS sick in the car, so when he told me he still felt icky in his tummy I continued to chalk it up to a little nausea.

Then, it began …  The best way I can describe it, is that he threw up like a boy.  It just came out without any focus or finesse.  Lulu gives me just the right amount of warning, and we’ve never missed the bucket.  Max just exploded all over.  It hit his chest first,  then all over his lap into the crook of his legs, which spilled between and under his butt and onto my back seat.  There was nowhere to pull over, so I told him to try to find something to throw up into.  Onto his shoes it went, and I started yelling “open the window, and puke out the window!!!”.  He faced the window, and full on puked into it, while it was still rolled up. Into the crack of the window and the door it went, dribbling onto the floor.  He finally started unrolling the window, but the damn back seats have the childproof windows that only roll down halfway, so more volcanic eruptions onto the side of the window.  I finally pulled over to a closed gas station, where I got him out and started dry heaving myself, as the smell of him wafted up and overwhelmed me.  I’m sure it was quite a site for the passers by.  And not a wet wipe or a kleenex to be found.

Luckily, it was just a 24 hour flu, but I now feel like I’ve been on an episode of Sienfeld, as I will NEVUH get the smell out of my car, and may have to sell it!

In the scheme of things, these are such small trials.  Jimmy and I are so grateful to continue on the work path, and working on finding some quality time together as well.  I’m heading back into doing more photo shoots as my consulting job ebbs for the time being.  Jimmy’s working from home for the holidays and I can’t wait to put up the Christmas tree this year, to circle round it together and celebrate all of our health and good fortune.  Even if there might be a puke bin hidden underneath the pine branches …

Love,

a.l.l. of us

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Lulu and “The Biebs”

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Hello Friends,

Yes, it really is Justin Bieber, “The Biebs” in the pic with us.   There’s quite a story behind this pic that I thought I’d share with you:  We have a friend, Neil, who is very well connected.  He also happens to be one of the nicest people I’ve ever known, a true humanitarian.  He emailed a couple of weeks ago, letting us know he had tickets for a few of the kids from Children’s Hospital.    He told us up front that it would be VERY unlikely to meet Justin in person, and that in all his years of doing events like this, only ONE celebrity had ever taken the time to meet the kids with cancer (Pretty sad, huh?).  We were fine with it, and just happy to be able to go to the concert.

Then, we got the call:  “Come to the SE corner of 4th and State and we may get you in to meet Justin”.  It felt very COVERT OPS and we were all in.  We rushed to get dressed and I threw Lulu into the first pink something I could find.  Jimmy dropped us off, and we were instructed not to bring anyone else in, just one parent and no cameras of any kind.  We met the group at the door and were escorted into the building.  We felt so V.I.P., -at least for a while … we ended up in the hurry-up-and-wait mode for over an hour.  Lulu had been Sybil-on-steroids all day, and here we were, in a heightened situation, with no food and low blood sugar and little miss crabby-pants.  Lulu was crabby too :-0.  I hinted not very subtly to the other moms to see if they had any food.  Nope.  Someone offered a Swedish Fish, and I took it for Lulu out of desperation.  She didn’t like it.  More waiting.  Security guards from the Bieber Tour came out all uber-cool, overly tattooed, but accomodating.  They were a stark contrast to the clean-cut suited staff from the MACC Fund and Bradley Center.  Suddenly, an extremely intense man in a t-shirt came out and started speaking to Neil.  Well, not so much speaking as condescending and power tripping all over him.  He was within earshot of our group, right out in the open.   I heard bits and pieces of “I don’t care who you are, you’re no one.  I’M the only you have to listen to …”.   “Who are you? Who are you?  Do you have a kid with cancer?  No, then you need to leave now” … “we need to get these moms out of here, it’s only the kids if we even let them in” … “they have to go outside and come back in … I don’t care if they’re immune systems are compromised, they need to wait outside” … It went on, and I shuffled away out of sheer embarrassment for both my friend and the a-hole who was reading him the riot act.  Let me mention again, that Neil not only organizes events like this, but he started a very successful camp for children with AIDS, and has been named man of the year by GQ magazine.  I was steaming for him, and, although he completely kept his composure, said he’s never been treated like that in all his years.  It turns out the man didn’t work for either Beiber or The Bradley Center, and we still aren’t sure who he was with.

We finally got clearance for the first half of the group to go in.  NO parents, just kids.  Did I mention Lulu was clingy, breaking down, on day 5 of steroids and closing in on full-on OCD?  I thought, this is NEVUH going to happen.  But my little spitfire looked at me with fierce and focused determination and said “ OK Mama, I’ll do it.”  I think she has more gumption in her little finger than most people have in their entire bodies!   She followed the older girls in, and one mom who had to push her son in his wheelchair.  We waited and waited, then waited some more.  The second group was called and could come in with ONE parent.  Really?!?  NOW they can have a parent?  We tried to convince security to let those of us with very young children in, but it was a no.  After about 45 minutes, Neil and I went back to the main entrance to see if the kids were anywhere near coming out.  One of the guards from The Bradley Center recognized Neil and, with obvious respect, asked why he wasn’t inside, he was V.I.P.!  The guards graciously escorted us back in, and Neil, always concerned for everyone else, made sure I got to Lulu.  She had apparently had a couple minor breakdowns and had to go to the bathroom.  I think I got there just in time.

Another 20 minutes passed and Lulu was given a pink wristband that read “Meet and Greet Justin Bieber’.  There were girls breaking down like they were at a Beatles concert.  There was periodic ear-piercing screaming, and I kept glancing at the floor, waiting for someone to faint.  We were whisked into a waiting area outside a small, 20×20 foot black curtained-off square.   Suddenly, we were inside, and there he was, so petite and pale, with a warm twinkle in his eye and a friendly hello.  His handlers quickly set us up for a picture.  SNAP. And we were done.  Out of the tent, wristband cut off, and out to the waiting area.

The kids from Children’s were starting to fade, as we waited another hour to get into our suite.  Yep, they had a SUITE for us!  The Bradley Center security team was extremely generous, and allowed us to go up before the main seating opened.  We were met with staff and a full assortment of savory and sweet treats.  There were 3 extra private rooms within the suite for those who wished to sit there.  Carly Rae Jepsen opened with a few songs before Justin came out.  Lulu was still in rare form, and continued to OCD her way through the night.  I think she had about 20 mini-tantrums during the course of the concert, and I struggled to keep calm as she kept demanding I sit a certain way, hold my arms around her just so, sit statue still during the beginning and endings of the songs (or the song would be ruined), and not talk to anyone.  I was fighting my own inner battle, as I have a lot during the course of this new behavior.  Do I give in to help her feel the control she so desperately needs, or do I just not take this ludicrous behavior and demand she behaves?  The other kids were all enjoying the concert, not having tantrums and I felt like that mom with that kid.  I ended up doing a combination of both giving in and disciplining.  I knew she really couldn’t control her behavior between the roids and the anxiety.  At one point I dragged her kicking and screaming into the bathroom until she could calm down enough to go back out.  I knew she was enjoying being there, despite her demeanor, and didn’t want to ruin a good memory for her.  But it took every ounce of my patience to sit through that concert, unmoving on a barstool, palms sweaty against her tummy, back aching and legs stiff, acting like I was having a great time.  Carly and Justin did a great job of entertaining the crowd, proven by the fact that I may be permanently deaf in one ear from the screaming.

It turns out Lulu does have a great memory of the day, and I hope I did the right thing, but who knows?  This is new territory for us, and we don’t have an instruction manual.  We feel strongly that this behavior is mostly drug-induced, and hope it isn’t permanent.  No matter where it’s coming from, we are addressing it but are taking her to therapy once a week, to help her through it.

We would come to find out later that a meet and greet with a picture of Justin can cost upwards of $4000!  Through the amazing Neil, the generous MACC Fund and the gracious Bradley Center, we brought in 11 kids with cancer, and he took a picture with each of us.  Justin Bieber, I may not be in your target market, but I am a fan for life.