All posts tagged erwinia

Highlights (mostly!)

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Hello Friends!

Wow, it’s been a while since my last entry.  Thanks for your patience.  I’ll hit the highlights and lowlights to catch you up to speed.  Luckily, this will contain mostly the former!

We ended up spending the holidays in a much more quiet fashion than anticipated.  We were just too exhausted to make the 6+ hour trek to my BFF’s house.  Staying home turned out to be a fantastic choice.  We just needed some R&R after 2012!   As my grandmother used to say, my get-up and go, got-up and went…  We took the kids to Children’s Hospital Christmas Eve.  I know, you’re thinking: “Really?  You CHOSE to go to the hospital?”  We did.  We were so grateful not to be there, that we figured we’d bring some cheer to those who were, while teaching our kids to give back, and be grateful for all that we have (This does not mean that they were cured of their American spoiled-rottenness, but a step in the right direction nonetheless!).

We saw some of our favorite nurses, and our social worker that introduced us to a family who had been diagnosed only 2 days prior.  All it took was one look into their eyes and I was hugging and crying with the mom, while Jimmy did likewise with the dad.  Their shock, grief and overwhelm was palpable, and all too reminiscent.  I think seeing Lulu there, bouncing up and down like a caffeinated bunny was reassuring to them.  Their 4-year-old son also had a.l.l.  Max and Lulu each gave them the $10 they had received from their “aunt” Carrie, to buy a gift for their son.  It was very tender, and the parents took a picture of our kids in their laps, to show to their son later.

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I’ve gone back to working on more photo shoots, and after a rough first day, felt back in the swing again.  The first day was just tough because I had to return to the ‘scene of the crime’, in a way …  I went back to the photo studio where I found out Lulu had cancer, and it was much more difficult than I had anticipated.  I was actually shaking as I drove there, and couldn’t even walk past the station where I had learned the life-changing news.  Ugh.  I was lucky to work with some wonderful models and crew though, and one photographer even brought me a beautiful bouquet of flowers to welcome me back.  That gesture was really big for me somehow.

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After that week, I spent left on my first work trip in over a year.  I went to NYC to work with a new crew, with the exception of my art director/friend.  It ended up being the perfect trip, with a fantastic crew who dressed up every day including a pajama day, hip-hop day (see above – I’m so gangsta, ha!), and pirate day!  Who does that?!?  We all hit it off and ended up going out the last night and having a lot more fun than my head would have asked for the next morning :-).  Oh, and my friend and I even caught a show!  We saw Chicago, and it was her first big show ever.  I swear I had more fun watching her delight than I did the performances!  There’s nothing like your first Broadway show.  She went from 36 to 6-years old as she sat on the edge of her seat, her hands moving from her open mouth to her heart over and over again.

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Lulu missed Mommy lots, but got through the week well.  I was so relieved.  It was very difficult to leave, but it was also much needed time for me to be … me again.

I entered a whirlwind upon my return as we prepared to have a film crew to our house the next day.  Do you remember the poster Lulu was in for Jazz Pharmaceuticals?  After meeting with them, they asked us if we’d be interested in doing more education with them.  They are the company that had the alternative drug to PEG-asparagenase, the drug Lulu almost died from when she had an allergic reaction to it.  We are glad there are companies out there who are looking for alternative and solutions to problems like these, and were happy to work with them.   I can’t say that about every drug company, but they really have a culture of integrity that has been consistent in every person we’ve met there.

They spent about 6 hours interviewing us, and made us feel very comfortable while discussing difficult topics; not an easy job.  Jimmy and I went first while the kids were in another room, then Lulu went solo and didn’t want to perform.  She was so shy you could barely hear her, which cracked me up because she is usually so loud and boisterous!  We all made sure the questions weren’t too pointed for her, as we really don’t want her to recall all the detailed horrors of her journey.  Max had the final interview, and of course nailed it.  That kid!  He answered the questions in his wise-old-young man way.  It was actually good for us to hear him sum things up and know his understanding even surpassed what we thought he comprehended.

More good news!  We will be flying to Palm Springs to speak at the National Sales Convention for Jazz Pharma.  The four of us will be featured on stage as well as in a break-out room for more in-depth q&a.  They want their company to see real faces of cancer, to keep what they do in tangible perspective.  I think we will serve as both a warning and an inspiration.  As we discussed during the taping, we never thought this would be our story, but cancer is indiscriminate.  We feel honored to participate in this way, and feel strongly about raising awareness about childhood cancer.

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This leads me to the lowlight portion of my entry.  Jimmy’s mother recently underwent two back surgeries, finding out shortly after, that he leg had broken just below the hip.  She had another surgery with pins and screws to fuse her leg back together.  She is recovering, but still in tremendous pain and we appreciate any good juju, thoughts and prayers you might send her way.  Her name is Sharon.

Overall, life is feeling hopeful again.  Jimmy is off on a work trip; Lulu is home with a cold, but nothing more.  Hopeful … for the first time in a long time.   I’m trying to stay in the moments, and feel them fully.  I’m doing my best not to think about the last year too much, or the fears of the future.   I’m remembering my previous entry on this topic:

Sit in the moments like a jazz musician sits in the pocket, never before or after the beat, behind or ahead of it.  Enjoy the sweetness of each note as it plays out.

Did I just quote myself?  What a dork.

Love,

a.l.l. of us

 IMG_2322 Oh, Mom …

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by T. Marie on January 15, 2013  •  Permalink
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Posted by T. Marie on January 15, 2013

https://all-ofus.com/2013/01/15/highlights-mostly/

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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by T. Marie on July 19, 2012  •  Permalink
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Posted by T. Marie on July 19, 2012

https://all-ofus.com/2012/07/19/an-eventful-day/

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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by T. Marie on June 27, 2012  •  Permalink
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Posted by T. Marie on June 27, 2012

https://all-ofus.com/2012/06/27/lemon-aid-10/

Lulu’s Ad

Lulu's Ad

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

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by T. Marie on June 14, 2012  •  Image  •  Permalink
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Posted by T. Marie on June 14, 2012

https://all-ofus.com/2012/06/14/lulus-ad/

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

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by T. Marie on June 6, 2012  •  Permalink
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Posted by T. Marie on June 6, 2012

https://all-ofus.com/2012/06/06/allowing-abundance-in/

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

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by T. Marie on May 25, 2012  •  Permalink
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Posted by T. Marie on May 25, 2012

https://all-ofus.com/2012/05/25/presenting-the-amaaazing-lulu/