Lulu’s journey through pictures

Today marks one year since Lulu’s diagnosis.  I found it too difficult to put the year into words, so I’m  wrapping it up in pictures, and Lulu’s art.

Thank you to the staff at Children’s Hospital, who saved our daughter’s life on multiple occasions over the past year, and continue to treat her, and us with love, respect and compassion.  Thank you to our community, whom we believe wholeheartedly gave us the strength to get through this year.  Thank you to those who employed us, and for the new opportunities that await us.  Thank you to all those we have left unthanked, but made a difference in our lives.  Thank you to my amazing husband and incredible son who are the strongest men I’ve ever known.  Thank you to Lulu, who’s had to deal with life beyond imagination, and has used her own, to cope with a world that defies explanation.  I love you. I love you. I love you.
One more year, five months and counting. Here’s to a.l.l. of us!
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Lemon-Aid

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Hello Friends,

I finally have a minute to give you an update.  Lulu is getting a blood transfusion at the hospital, and after getting some Benadryl, is heading off to what I hope will be a nap.  It’s quite peaceful here right now, the lights are dim, the nurses don’t have to check on us quite as often as usual, and I’m in my favorite lazy-boy recliner with laptop on my lap top.

It’s been a stressful time, although Lulu is doing amazingly well.  I feel a little guilty complaining because this course has been SO much better than expected.  Physically, Lu is kicking booty, hasn’t gotten sick once, is continuing to eat (junk food), and has enough energy for a thousand men.  I don’t know how someone can have so much energy on chemo.  It seems impossible.  I swear they’re slippin’ in some speed or amphetamines of some kind into the mix!

This brings me to what’s been harder to deal with; her mood.  ANGER has seriously set in, and it comes out hard, fast and often.  Her tone is as disrespectful as a teenage girl’s during puberty.  I think it’s a combo of all the drugs coursing through her veins, as well as a general feeling of ‘this sucks and I’m sick of it’.  She says things like “I wish I NEVER got sick in the first place!”  “Why do I have this and other kids don’t!?!”, and “YOU’RE lucky YOU’RE not sick!!!”  Can’t blame her.  We all feel the same way, including Max who also seems more affected than usual these days.  He’s been dealing with her anger as well, but luckily has camps to keep him distracted during the day.  It feels like this all should have been over a while ago, yet we go on and on with treatment.  She has to endure more shots in the legs, more pills, more chemo…  We spend a lot of time in the hospital: 4-5 days this week, and 3-4 next to get treatments. She also got an ear infection, which can make anyone crabby. I’m feeling slightly relieved that she needed blood today, since being low in reds makes you extremely irritable.  It feels like a partial answer at least.

I just had to take a break because, ironically, she threw a HUGE tantrum after taking a liquid pre-med she didn’t like.  She slammed her fist into her juice box, which exploded all over the room.  Of course the nurse and doctor were there to witness the event for maximum impact.  It’s hard not to be embarrassed by her behavior, and it’s even harder to keep my own temper under control as of late.  I’ve failed on a few occasions, but try every day to stay calm.  Dad and Jimmy have both been gone again, which makes it harder.  My dad had to go to help out with some flooding up north, and I know he is needed there.  Jimmy’s been all over different states working and we’ve been two ships passing in the night.

I have to tell you about a little escape I wriggled in.  I went to NYC for 2 days with the consulting job I’ve been working on.  Somehow, I’ve been juggling a fairly heavy load of work with caretaking (how does Jimmy do it?), and have truly been enjoying the distraction work brings.  The day I left, Jimmy got home at midnight from the airport, and I flew out at 4 a.m.  The trip seemed guided by fate from the get-go.  I ran into a model/friend whom I adore on the flight (I work in the fashion industry), and we ended up sharing a cab together and catching up on the way.  That seemed to set the tone for the whole trip.  My worlds kept merging in unexpected ways.  On more than one occasion, I would be in a meeting with someone who would share how cancer had touched their lives, or they were dealing with it now, or had dealt with it in the past.  No one knew of my situation, the information came organically.  Those of you who have children know what it is like to meet other parents and instantly be in the so-called Parent Club?  Being in the Cancer Club seems to create an even deeper and more instant bond.  I had a potential vendor hugging me with tears in her eyes, and shared an unspoken connection with a former colleague that went beyond the moment.  His partner had been just 2 years out of Cancerland.

This strange kismet continued into the evening.  A very good friend of mine is a famous Broadway percussionist and was performing at The Carlyle the night I was in town (brag, brag).  Luckily, my colleague Joseph was up for it, and we headed to the show.  We got the last two seats in the 75-person capacity room, and ended up moving over to what was a perfect spot for the show.  It was in intimate four-person cabaret act with Laura Osnes who sang the bejeezus out of every song.   She dedicated one song to her mother who had recently passed away.  I fought back the tears and hoped my colleague didn’t think me completely unprofessional.  This was juxtaposed by a shout-out that came as a surprise even to me when I all-too-loudly said ‘That’s Joel Freakin’ Gray!!!” as he stepped onstage to do a number with Laura.  Did I mention Tommy Tune was only a few feet away from us? It was an overwhelming blessing after not being out in so long.  We met my dear friend Larry after the show and talked with Laura.  She told me her mother had died of breast cancer, and I told her about my daughter.  More tears.  Sheesh.

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The next day went very well, I kept it togethuh, and we flew out later that night.  Well, we flew out after our cab ran out of gas DURING RUSH HOUR ON THE FREEWAY IN NYC.  – And it felt like it was 115 degrees outside.  Something in me just knew we’d be ok, and I felt totally calm.  Sure enough, another cab pulled up within two minutes even though he was headed in late to a shift.  We got to the airport, waited for them to fix a leak, and landed home safely that night.

Back to reality; hardcore reality.  I know many of you are not only following Lulu’s progress, but have gotten to know a little about our friends Joshua, Kate and Bo.  Joshua is declining rapidly, but seems to be enjoying every minute he can with his family, traveling and meeting his idols.  Kate is starting to walk again, and eat a bit, but still has a long journey ahead.  Bo and his family got the devastating news that not only has his cancer returned, but it is difficult to treat, and a kind the docs have never seen before.  Long story short, they were given a couple of options.  They could do palliative care, which means just making him comfortable with no more treatment, or total body radiation and chemo and fighting like hell into the unknown.  He and his mom are choosing to fight!  Percentages of survival don’t matter if you’re in the right part of the equation, and I believe Bo is capable of being the exception.  Lulu and I visited him yesterday, and although I could see the sadness in his eyes, I could also see someone just pissed off and determined enough to fight.

As I hugged his mom, an amazingly strong and gregarious woman, I could feel her pain.  She loved seeing Lulu, but I know it’s difficult too.  When your child is very sick, it’s bittersweet to see other children doing well.  You’re so happy for them, but you also feel other emotions.  Not envy, but rather a deep longing.  You long for the blissful ignorance of having a healthy child, one you can take home and hug and love forever.  Having been on both sides of the coin, I’ve felt all these emotions, and know how other parents feel when they’re in similar positions.  It’s all just really hard.

I’ve been in tears daily since we got the news on Bo, and I know all of you as humans are affected by reading this.  While I ask for your continued thoughts and prayers for these families, I hope to call you into action as well.  I’ve realized my own tears, and feelings of sadness aren’t tangible; they don’t make any difference in the real world.  We want and need to DO more.  Lu had the idea of starting a lemonade stand to help other kids.   We will open Lulu’s Lemon- Aid Stand this Sunday (and as many days as we can) in front of our house, all donations to go to Children’s hospital and cancer research.  Even though this is a small gesture, it is something.  We plan to do much more in the way of donations after we get through our own medical bills.  I want to ask each of you to do whatever feels right to you, big or small.  Maybe it’s visiting someone who has cancer, sending a gift, making something to donate, giving blood or platelets which are always needed, making a meal, or donating in a monetary way, even buying local produce to help reduce pesticide use, whatever floats your boat.  Post it here to help inspire others, or keep it close to your heart.  If we all turn our empathy into action, maybe there will be less Lulu’s Kate’s Joshua’s and Bo’s in this fight.  The little things really do make a difference.  Lulu offered a woman a potato chip on the elevator yesterday.  A potato chip.  The woman crouched down, thanked her and gave her a hug.  She said she really needed that today, and broke down in tears.  I had seen her with her little boy earlier, knew what she was going through, and how that tiny chip and that big hug affected her.

We are only two weeks away from beginning our 20 months of Maintenance Therapy, and are pushing through in anticipation of a new normal.   Thank you, as always, for riding along with us for 8 long months and onward.  I know we’ve had readers come and go, but the majority of you have strapped in, read everything, and continue to keep up on the rainbows and storms of our journey.  We really wouldn’t be as strong without your support.

Thank you sincerely,

a.l.l. of us

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Allowing Abundance in

Hi Friends,

Thanks for your patience; this week has been incredibly busy!  There’s so much good stuff happening that I’m trying to be conscious of allowing it in, not questioning it, or feeling overwhelmed by it.  After the year we’ve had, this is not an easy task.  I’ve been waiting for the other shoe to drop more than I’ve been allowing  abundance in!  Yet, that is what I aim to do.

I’ll start with no news is good news on Lulu.  She’s the squishiest, cutest and chubbiest she’s ever been, and a whopping 42 lbs. after this week of steroids!  She’s still craving foods like a pregnant woman in her third trimester, but to see her actually eat more than a couple of bites of something is just remarkable.  Her blood counts are next to nothing this week, so she is delayed for the last big-daddy round of chemo.  She might need a blood transfusion or platelets this week, but that feels like a mere pause at a pedestrian crossing compared to the sadistic marathon we’ve been on.  She’s feeling good, drawing rainbows and enjoying the summer!  I too, love summer so much; it makes me feel like a kid again.  Riding bikes, sitting on the porch, having water balloon fights in the backyard … it’s all so filled with life.  Max is excited too, although he’s melancholy over leaving his elementary school.  Well, he’s genuinely forlorn, actually.  But how amazing to love school so much at his age that he doesn’t want it to end?  I don’t recall having that same feeling … do you?

Realizing this will likely sound trivial, I must tell you that Lulu tied her own shoe for the first time.  I think parents with children who are life-threateningly ill subconsciously stop looking at things like comparison charts, growth charts, and expected milestones.  Every time I get one of those “Your Preschooler this Week” emails, I delete it instantly, for fear she may not meet some silly standard listed there.  Before treatment begins, the doctors give you a list miles long of the physical, mental and behavioral problems that can happen due to chemotherapy.  As you sign the documents declaring your understanding of the risks, you force your eyes to blur the words together on the page while holding your breath.  The normal expectations just don’t matter now; all that matters is that she’s healthy.  So, it took me by surprise when she tied that shoe, and how beautifully on par it was.  She was giddy with delight over her accomplishment and both Daddy and Mommy were there to share in that joy with her.

Things with the rest of us have been pretty good too.  After deciding not to work for these 7 months, the perfect opportunity seemed to land in my lap.  I’m doing some freelance consulting, mostly from home.  I could tell you more but then I’d have to shoot you, as I signed a non-disclose J.  Suffice it to say, I’ve had to wake up that fat lazy hamster who’s been couch-potatoin’ it up in my brain.  He didn’t get any warm-up either, just had to clear the cobwebs off his wheel and start sprinting baby!  He’s hanging in there though, after a little WD-40 and some unconditional love.   It’s been a little stressful, but also a welcome challenge, and I think good for Lulu to see me doing something that’s normal to her, too.  Jimmy’s work has thankfully been flowing in like a raging river, and he’s using all his great stamina to keep being the rockstar he is.  He’ll be travelling again very soon, which brings me to the good news that my dad is staying with us for a while!  We’re busy turning our bedroom-turned-closet back into a bedroom for him so he can have his own space.  We are all glad to have him here.

But wait, there’s MORE INCREDIBLE NEWS!  Lulu and we were chosen to do a photo shoot for an international drug company.  Apparently, quite a few caregivers from the hospital referred us to the company that makes one of the life-saving drugs Lulu is on.  This was a real compliment since they wanted a family who was still (mostly) thriving during this ordeal.  (We just found out the divorce rate for a family going through this is 70 percent!!!).  Ironically, the ad is for Erwinase, the drug I wrote about recently that requires shots in Lu’s legs.  They flew in a crew from L.A., and we did a photo shoot at the lakefront, and in our house (OMG, yes, we had to deep clean for that!)  We didn’t know how the day would go with Lu weaning off the effects of the steroids, and being a wee 5 years old.  Well, that little hambone tore it up!  The shoot was supposed to be 3 hours for two locations and ended up being 5.5 hours!  She was eating up every single minute, and you would have thought she’d been doing this for years.  The crew was amazing, kind, and absolutely fell in love with our little princess, hence the extra pictures.  Jimmy, Max, Grandpa and I ended up in some shots too, and had to sign releases.  Lulu told me how happy she was, and that she had “awlways, AWLWAYS” wanted to do something like this.  She had, in fact, been begging me to let her model before she was diagnosed, and I was considering giving in.  It was wonderful to see her celebrated, bald-headed and all, in this way.  Apparently, each person in each of their campaigns is given a word that describes them.  The word for Lulu: “Spirited”…  a perfect fit!  I’ll be sure to put the ad in the blog when it comes out.

So yes, we are allowing abundance in this week, or for however long it is here.  And I’m trying not to feel a sort of survivor’s guilt during this time.  Our friends Kate and Bo are still struggling and we think of them every day along with others at the hospital.  Kate has made huge improvements and is receiving mostly homecare now, but it’s still extremely difficult, and exhausting for her and her parents.  Bo has had some setbacks, but is in line for a bone marrow transplant now and luckily only had to endure one big round of chemo to knock his counts out before being eligible.  I know they’re happy when any of us are doing well, just as we are for them, so I hang on to that.  We go to visit the H.O.T. unit every chance we get, and are donating the proceeds from the photo shoot to that unit.  Please continue to keep all those kids in your thoughts and send them some good juju when you can.

Jimmy and I recently got to go on an impromptu afternoon date, on what was pretty much the perfect day.  As we drank a mojito, ate delicious food and sat in the sun, we felt so grateful.  Grateful for our family, and for you, our friends (even virtual).  Grateful for the beautiful day and the love that surrounds us.  Grateful for this moment in time, right here, right now.  Thank you for not forgetting us, even though life is full and time has marched on.  We welcome and appreciate your love … and abundance!

a.l.l of us

Radio interview with Lulu

Many of you have asked to hear the recording Lulu and my husband did for Children’s Hospital, so here it is in all it’s beauty.  I’m SO proud of them both.  Lulu’s voice dapples sunlight throughout, and shines ever-so-brightly in the end. 
Thank you for taking the time to listen, and to our dear friend Tabb for getting this recording to us.