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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