Posted by T. Marie on May 28, 2012
https://all-ofus.com/2012/05/28/radio-interview-with-lulu-8/
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
Posted by T. Marie on May 25, 2012
https://all-ofus.com/2012/05/25/presenting-the-amaaazing-lulu/
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
Posted by T. Marie on May 16, 2012
https://all-ofus.com/2012/05/16/unexpected-kudos/
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
Posted by T. Marie on May 10, 2012
https://all-ofus.com/2012/05/10/dun-dun-duuuuuhnnnn-delayed-intensification-3-2/
Normal. It’s a word I’ve never really identified with. Growing up as an overachiever of grand proportions, I’ve always shied away from words such as this. I’ve never aspired to flirt with Normal, or tango with Average, and can hardly utter the word… Ugh… Mediocre. Routine? – the bane of my existence, and solid was a word I’d like to hear only in reference to my backside. I always pictured myself living a more glamorous existence, chasing the tail of life, and filling it up with adventure. I’ve discovered, however, that normal is relative, and certainly not bad. In fact, I would even say I now crave normal.
This past week was surprisingly just that, with a daughter who was functioning as a wonderfully average five-year old. Lulu is off of chemotherapy for almost two weeks, and our regular-ish little girl has reemerged. What most people find to be ordinary, we now find extraordinary. Her fighter blood counts were so high we were able to do crazy things like go to the grocery store! We got ice cream one day, and went to a park – WITH other children! We sat at the dinner table together and shared a meal where Lulu actually ATE! It was only yogurt and one bite of chicken, but we could have been dining at The Four Seasons, it felt so good. I had a business meeting that I’m not sure how it went, but who cares! It was a normal thing to do, something I haven’t done in 6 months. I met a good friend who is going through a hard time and I was able to listen to someone else’s problems. Wonderful! My dad is in town and we actually went out on not one, but two dates! I mean, come on, this is pure gluttony.
The icing on the cake was a visit to Lulu’s K4 class. She had only attended for 2 months before her diagnosis, but her school has been surrounding us with love ever since. When we entered the classroom, a hush fell over the room. The kids were lovingly and cautiously instructed not to touch her due to exposing her to germs. We hadn’t been able to tell the teachers of her improved status for this week. Lulu was beyond excited, bouncing up and down, overwhelmed into smiling silence and eyes so happy they squeezed almost shut. Gingerly, the little ones approached. Jimmy, my dad and I watched from a distance, letting go of any control over the situation. One little dark-haired boy came up to her and quietly said, “Hi Lulu, you look just beautiful”. Wow, thank you God. The kids were curious, but completely respectful. I wanted to grab each one of them and squeeze their little cheeks off, then send a letter to their parents thanking them for raising such gems. Her principle read a story to her class as Jimmy and I held hands, being sure to keep the other hand free to wipe the tears that were escaping rapidly.
Yes, Normal is relative. I remember when Lulu had an undiagnosed ruptured appendix on top of her leukemia, which caused her excruciating pain and multiple surgeries. There were times when we thought to ourselves: can’t she just have normal shitty cancer? Bo, a boy we met in the hospital during this time, is one of the sweetest, most kind-hearted boys I’ve ever met. He was recently given his walking papers; remission. He rang the bell at clinic, meaning his fight is over, he’s won, and his new normal can finally begin. We felt lucky to be there that day. He had adopted Lulu when she was at her worst. Bo saw the little fighter in her, and just took to her, even when she was too sick to even know he was there. He’s been her big brother from down the hall, making her little presents and always keeping her in his prayers. Bo just celebrated his 13th birthday yesterday, and his present? He found out his leukemia is back. Please pray for him and his family. Normal has now moved into divine.
-and, Hey Normal, we know we only have you committed for two more days, but please stay for a while… and visit Children’s often.
A.L.L. of Us
Posted by T. Marie on May 5, 2012
https://all-ofus.com/2012/05/05/normal-is-underrated-2/
a.l.l. of us 