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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Here it is! We are so proud of our little firecracker. Yes, she is Spirited indeed …

We are a bit in the weeds this week, but I will write asap! She’s doing pretty well, and we are all hanging in …
a.l.l. of us

Presenting …. The Amaaazing Lulu!

Lulu.  She’s amazing to me.  She’s been hanging so tough this last couple of weeks.  Although this round has been better than expected so far, it hasn’t been easy on a little 5-year old.  She’s taught me so many things throughout this process.  I’ve learned through her wise words, as well as by what I’ve had to teach her to help her get through this ordeal.

Some of my favorite Lulu quotes of the week seem to develop out of the mist.  She might be sitting in the car, or going for a ride in her stroller, or waiting in the hospital, but they are always preceded by a soft silence:

“Mama, We’re all made differently, I’m supposed to look just like this.  Not like anyone else.  Just like this (smiles). ‘Cause this is how I was made.”

“You know what would be the worst villain ever?  A flower-making villain who shoots flowers out of a gun.  Now that would be lame.  The good guys would be, like, ‘really Dude?”

“Mama, just because we can’t see something doesn’t mean it’s not real.  We can’t see air or the wind, and that’s real.  We can’t see God, but that’s real too.”

“You know what?  Girls can rap too.”

Every week she’s had to endure painful shots in her legs, two at a time, 3 days/week.  Because she had a horrible allergic reaction to one of the chemo’s a while back, she must endure 24 shots of a similar, but different strain of chemotherapy.  Can you imagine being 5 years old and having 3-4 nurses come in, dressed in full chemo gear, holding you down and poking two 2” needles into your legs simultaneously?

So … we’ve been working hard on self-talk.  We have to put numbing cream on the spots 1-2 hours before injection, which gives plenty of time for the total fear and anxiety to build up to near hysteria.   Therefore, we’ve developed an inner dialogue worthy of a scene from The Help:  “I am brave, I am strong, I am tough, I am LULU!”  I whisper it in her ear over and over again, until she starts breathing more deeply.  I’ve taught her about her “brave spot”, which she says is sometimes hiding in her toe, and one time it was even hiding in her bum!  I physically roll the brave spot all the way back up into her heart and have her hold it there. We talk about how many times she will have to endure this, how amazing she is, and what a beautiful strong woman this is going to shape her into being.  She really understands and tries mightily to overcome her fears.

The nurses are as kind, gentle and patient as they can possibly be, and allow Lulu to have her one bit of control over the situation, which is allowing her to count to 5 before they give the shots.  She makes them promise over and over again to do it quickly pweeze, and put the band-aids on wright away.  Pweeeeze Pweeeze! After a few rounds of that, she gathers herself, closes her eyes and says “o.k., o.k. I’m doing it.  I’m doing it.  O.K.  She likes to watch everything that happens, so she chooses one of her legs to look at, then, as fast as humanly possible, she says “onetwofreefourfive!”  The injections come, and even with the numbing cream, the chemo going into her thighs burns.  She screams operatically, and squeezes our thumbs as hard as she can.  She really, really likes both Jimmy and I to be there, and the days Jimmy can’t be there are always harder.  After a few minutes she recovers, and always says “That was the ONLY storm for today, right?  Now it’s rainbows for the rest of the day! RIGHT?”  Yep.  Rainbows the rest of the day, I promise honey.   We have two weeks off from these, then two more weeks on.  Good grief.

Other than the shots, Lu’s been tolerating her treatment extremely well!  The steroids haven’t been nearly as bad as the first round, and I think we’re trying to see the lighter side of her dramatics as well.  Just don’t laugh at her when she’s mad!  Ooh, it’s so hard, she’s so funny!!! Everything is theatrical. “NO, MAX IS BUUUUGGGING MEEEEE!!”  “WHY won’t Max PWAY WIFF ME?!? I WUUUUV HIM!!!”  These sentences could be said within 5 minutes of each other.  You get the picture.

She’s been nauseous a few days, but is STILL EATING!  I’m afraid to even write this down, that I might jinx it somehow, but she is OFF OF HER FEEDING TUBE!!!  Oh, it’s glorious to see those two little soft cheeks again.  She looks so beautiful, and is overjoyed at getting that darned tube out of her nose and throat.  We’re praying she doesn’t need it again, but the docs know it’s a possibility if she doesn’t eat enough, or starts vomiting.  Her counts have just begun bottoming out and the hardest drugs begin next week, but one day at a time …  I know this little girl can do anything she sets her mind to.  She is truly one of the most determined people I’ve ever known.  If she will only use her powers for good, how amazing she will be in the world!

Oh, and know that Lulu fully realizes how special she is, as she demonstrated the other day:

“Do you want to see that I am special?” (gets up from her chair, turns around with her back to us, then whips her head around) “Look!!!  I can see my own butt!”

It’s been a rainbow-liscious week, which wrapped up with my big boy playing the lead in The Jungle Book, and my hubby and baby girl going live on the radio.  Max was adorable in his little red loincloth and fake-bake.  He was bubbling over about it, and told me that if he had a second middle name, it would be Actor.  A ham is born.  Daddy and Lulu were on the radio yesterday to raise money for Children’s Hospital.  To say I’m proud of them doesn’t begin to cover it.  All got to listen to my articulate, obviously moved husband and the sweetest voice you’ve ever heard from Lulu, who knowingly wraps things up beautifully in the end of the segment.

Love,

a.l.l. of us

Unexpected Kudos

Hello Friends,

As I was responding to the comments readers had made on my blog this week, I was delighted and surprised to find this:

“It’s an odd little community of bloggers–those of us on-line writing our mind and heart. And then to stumble upon you and the Grace and courage conveyed … remarkable. I read your blog, because it breaks open my heart each time I do and it reminds me what truly matters in life. As Billy Joel once sang “I have been a fool for lesser things.” I nominated you for the Very Inspiring Blogger Award.  I want you to know that you and Lulu have a wide touch…beyond family and friends…into the internet ethers, inspiring and blessing people like me who bear witness to this sacred dance you do with your daughter. You and Lulu are in my heart and I am grateful to follow your story and to bear witness to its awful tenderness.”  

Stephanie Raffelock  http://callingoftheheart.wordpress.com/

  

Wow.  What a wonderful surprise.  I’d like to thank Stephanie for nominating me for the Very Inspiring Blogger Award.  I didn’t know if my blog would really reach people beyond the cancer story … I just hoped that it would.  The award is truly lovely, but the words from Stephanie are the real trophy to me.  Her writing is soothing yet inspiring, and reminiscent of my mother’s ideology.  I’m so grateful that she found me, and that I found her writing.  I hope you will visit her site often:  www.callingoftheheart.com

To receive this award, I must list 7 interesting things about me, and tell you about some bloggers that inspire me, so here ya go!:

7 Things:

1.  I used to be an opera singer.

2.  I (very) occasionally snort when I laugh.

3.  Between singing jobs, I once did a national tour where I played a dancing Sesame Street-type character.  The costumes were 40lbs, and difficult to see out of.  At one of the shows, I fell off the stage onto the unsuspecting first row of children.  No one was hurt in this horrifying incident :-).

4.  I grew up painfully shy, and although you wouldn’t guess it if you meet me, I still struggle with it.  Now it just comes out as intermittent moments of social awkwardness. Nice, huh?

5.  Mad Men and Smash are my drugs of choice.  I’m totally addicted.  I even dressed up as Joan for Halloween.   I stuffed a padded size F bra into a tight red dress.  Men still stopped me to ask if they were real.    Oy.

6.  I rowed crew for a summer 3 years ago.  I was in the best shape of my life and always long to get back to it.  I loved the peacefulness of being on the water and the camaraderie of the women.  Of course, there was that time this duck took a paddle to the head … He came out of nowhere, I swear!

7.  Having a daughter with cancer has almost wholly cured me of the disease to please.  I find it easier to speak my mind, write, and say no.

Although the rules suggest I nominate 7 bloggers, these days I don’t truthfully keep up with 7.  With that in mind, here are my 4 nominations:

Fancy Feet:  www.heidicave.com

A tragedy turned triumph led this woman to share her message of hope, love and courage with us.  She is currently publishing her first book, based on her blog.

An Inch of Gray: www.aninchofgray.blogspot.com

Thoughtful and self-depracating, Anna See takes us on a visceral ride through her life.

Chase your bliss: www.toussaintmorrison.blogspot.com

If you read my entry “Seeing is Believing”, you will know why I am nominating Toussaint.  His young, raw talent is blossoming into a strong voice that will have an impact on this world.

Glamaross:  www.glamaross.wordpress.com

Sharie Ross found me by chance over the worldwide webs.  I just like her.  She combines glamour with reality and humanity.  She reminds me of the fashion industry I recently worked in, and that motherhood and glamour are not independent of each other.  She is also a cancer survivor, and therefore, in the club.

Thank you to these, and other bloggers whom I have yet to discover.  I’m simply a newborn to this world, but feel excited, connected and supported by it already.  As the award states, you are all “keeping the blogosphere a beautiful place”.

Gratefully,

T. Marie

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