Special Sibling Surprise to Share

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Hello Friends,

I was recently doing hair and makeup on a photo shoot with a model who is dating Packer tight-end Ryan Taylor. She overheard someone asking me about my daughter, who is currently being treated for leukemia. I told her a bit about Lulu, age 7, who is 3 months from finishing a tough 2.5 year chemotherapy course. I also told her about my 10-year-old son, who has been amazing through it all. She generously offered to send him something from Ryan. I knew that would mean so much to him since he is a HUGE Packer fan. 

It’s more difficult than we realize, for the siblings of those going through cancer. The sick child is given so much time, attention, and showered with gifts. Often, the well sibling is overlooked… Our son has been nothing but gracious through it all, never showing a sign of jealousy or crying out for attention. Making his sister laugh when she needed it, and hugging her at just the right times. 

Today, a box arrived in the mail for him. Inside it was not only a signed photo from Ryan Taylor AND Randall Cobb, but a number 12 signed jersey from AARON RODGERS !!! 

I’m so grateful to be able to share this beautiful Christmas story with you, to thank Abbie for her thoughtfulness and Ryan and the Packers for their generosity. Lulu continues to be up and down with nausea, vomiting and pain, but she is incredible; a force to be reckoned with.   We are still pushing through to March 6th, 2014 when she will take her LAST dose of chemo!  

Happy Holidays, 

T. Marie and 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.