I want you to meet someone remarkable today. Her name is Livy. At 22 months Livy was diagnosed with Gorlin Syndrome; this is a genetic syndrome that causes the body to create cancerous and noncancerous tumors to grow.
In August of 2015, Livy was diagnosed with brain tumors or medulloblastomas. She can not tolerate radiation treatments, so the only avenue that her family has to help her is with chemotherapy treatments. Livy’s syndrome and cancer make her treatment a very rare case.
Two members of the Gilroy, Morgan Hill Community nominated Livy. Her father attended Live Oak High School with one and the other was a family friend. They wanted to do something to reach out, to let this family know that many people were praying for them as they travelled this unthinkable journey.
The Go Fund Me Page sums up their journey best,
“There is no real ‘cure’ for many pediatric brain tumors, many of the choices facing the parents of children inflicted with the form of pediatric brain cancer Livy is facing are ‘the devils choices’ as one of her doctors put it. A few of the largest hurdles you must overcome when you are put face to face with this disease are the lack of awareness, lack of funding for research and cures, and the general support needed to make the decisions that will impact a young life forever.”
Our elves were able to make sure that Livy had a handmade scarf and hat to keep her warm on her trips and stay in UCSF. They also helped get her a frozen dress, shoes and a Frozen Castle. We were told she liked that Disney movie.
“Do your little bit of good where you are; it’s those little bits of good put together that overwhelm the world” – Desmond Tutu
Okay so today I am going to get up on my soapbox a little bit for this one. Pediatric cancer is a cause that is near and dear to my family. I know too many lives that have been forever altered by this disease. Did you know that 3 new medicines have been created for pediatric cancer in the last 20 years and that 23 new medicines were created for adults in 2012 alone? And as you saw from the stats above there is little funding that goes toward pediatric cancer from the government or other existing cancer organizations. Unravel, which I have spoken about before is an organization that specifically raises money for pediatric cancer. We need to start paying attention to these stats and to the faces of pediatric cancer and start saving their lives.
Today’s recipient is fighting cancer and if you noticed we had an earlier recipient that is fighting pediatric cancer and we have another one I haven’t yet written to you about. Bottom line there are too many children that are fighting this disease to have only 3 types of medicine to fight it and very little funding to back new research.
And now as I step down from my soap box that brings me to Vanessa. Readers meet Vanessa.
Vanessa recently had her leg amputated as part of her battle with this disease. Shaleen nominated Vanessa and had this to say about her, “I have seen some of her journey on FB and it is truly amazing to see her bright smile in every single picture whether she is out and about in her wheel chair or in the hospital bed. Her huge family has been right by her side through this all. To see the love they have for Vanessa and the strength they all have is amazing!”
When Shaleen told Vanessa’s aunt that she had been nominated and was chosen to receive a gift she was so touched. She wrote in to say, “[T]hank you so much. It’s definitely been tough, but she’s still here with us and despite what she’s gone and going through she’s in good spirits. She’s a tough cookie !” She also let us know that she really wanted an American Girl doll. What happened next brought Shaleen and I to tears.
I posted on my FB group page that we needed an American Girl doll for a recipient that was battling cancer. I had two donations within 10 minutes. The sense of joy and gratefulness that encapsulated my heart was indescribable. You have already seen that Elayna received one of the dolls (click here to read about it in case you haven’t read that post yet) and Vanessa was given a doll as well. Then what was even more special is my friend Rebecca heard about who the recipients were and she told her mom who then made scarves and hats for all the girls and tons of doll clothes! You elves are one amazing bunch that is for sure!
It gets better…Katie who donated the doll, movie, and one of the outfits took her girls with her so they could share in the Holiday Cheer and learn about doing something good for others. Check it out…
Then this transpired on Facebook after the delivery of the gift and I just had to share because this is what holiday cheer is all about!
Speechless yet…yeah I was, too.
I know I speak for all of us when I say we are sending prayers and thoughts of supreme strength to Vanessa and her family. She is a brave soul who is definitely one tough cookie. We hope that the gift brought her some joy and let her know that there are so many people rooting for her, so many people whose lives she has touched.
Until there is a cure,
Shaleen, Katie, Rebecca, Michelle and the holiday cheer elves
I am so excited to introduce you all to Elayna. She is absolutely radiant! I first came into contact with Elayna and her mom, Lucy while our family was fluttering in September for Unravel. (If you haven’t heard about Unravel yet is an organization that was founded to help raise funds for pediatric cancer research and you can learn more here). Elayna is a cancer survivor and she wanted to be a part of the Unravel Fluttering Campaign to help children like her. Her mom shared pictures and videos via a group on FB and well…we all just got to know her so well. Her vibrant, energetic passion and love of life was contagious to say the least. I mean just look at this kid!
At 6 she has already beat kidney cancer and was 9 months into remission when I “met” her via the Unravel Fluttering Facebook Group. What happened next was heartbreaking. This princess warrior was diagnosed with lung cancer. Elayna and her family are once again fighting a battle against cancer.
There are two fundraising pages for Elayna in case you are interested in helping her and her family since I know many of you have asked how you can help more:
What was amazing was that a pair of donors came forward that wanted to get Elayna an American Girl doll. Not only did they get her a doll they also purchased matching pjs for her and the doll, the movie, book and accessories for the doll. I was in awe of their generosity. We also had someone hand make a scarf and matching hat for Elayna.
Elayna’s mom Lucy had this to say about the gift once it was delivered,
“This girl is so loved. Thank you so much for caring enough about her fight and her path to want to send her some joy like this. I looooove the frame picture. And the hat and scarf are sure to be favorites right away. 💕 Elayna has never had a “real” doll before and it was hilarious to see that she didn’t know what you did with one at first when she unwrapped Kit. When I explained all the things you could do with her (and that she came with a story and all) she said ‘Can you even put pjs on them?’ And I said, ‘I’m sure we can get pjs someday for her.’ Then she couldn’t stop smiling and giggling when she opened the pajamas next. Ha! Please thank everyone who was involved in Elayna’s gifts. We are so touched by the generous spirit.”
Thank you so much, Holiday Cheer Elves: Bella, Kim and Rebecca for bringing a smile to Elayna’s face.
All of the Holiday Cheer Elves are praying and cheering for Team Elayna.
The weather here in California is not getting with the program that it is October. It has been hot and humid with very few cool days. We need rain out here and I know there are parts of the world where things are much worse, but I wouldn’t be human if I didn’t complain a itty bit. As the year draws to its last quarter, I think my reflecting on what I have learned is becoming more blunt and matter of fact. Hopefully my hard-earned wisdom with help you find the same knowledge without as much work.
It is more than okay to say, “No.”
A few weeks ago I planned a playdate for a Friday afternoon evening, where my mom friends and their kids could stop by and hang for a bit. I promised pizza and drinks. Well my week quickly went from okay to crazy. My grandmother had a major stroke, the kids were giving me major run around on every teenie tiny thing, a few extra work projects fell into my lap and I finally decided it was all too much and cancelled the get together. I just knew if I attempted to pull it off I would stress and be over exhausted and bad company. What I found from this was the amazing group of friends I am blessed with. Almost each one of the women I invited praised me for cancelling. They totally understood. One of my dear friends dropped off flowers. All of them offered help and I sat back in awe and wonder of these fabulous friends. I am so blessed that these people are in my life. I know how great they all are, but by saying no and being honest with them that I couldn’t do it all I was able to see this side of them as well and I am so glad that I did. Of course, one said she would come TP my house and yes that made me love her even more.
If you are like me and need to hear that having a meltdown even as an adult is okay…then it is okay; really it is.
Do you find yourself trying so hard not to lose your mind at the child that questions your every ask? Do you find yourself trying to stay calm as you wait for your child to find their shoe when you needed to leave for soccer 5 minutes ago? Are you constantly stepping on Legos that were supposed to be cleaned up 20 minutes ago? Do you find yourself breathing deeply while you listen to your children bicker and argue about who DID NOT spill the milk all over the kitchen and not tell anyone? Do you ever have to plunge an over-clogged toilet that some sweet child used even though it was already clogged and pray to the God’s of human waste to please not let anything spill over the edges only to have your prayers go unanswered? I can empathize. Sometimes all of this happens in one day and when your children start to argue in the car you lose your mind and snap at them all only to feel terrible 10 minutes later and have to apologize for yelling, but not for being fed up with their behavior. Yep, that’s an average day of parenting and you should cut yourself some slack because we can’t all be Mary Poppins or Florence Henderson – our days don’t fade to black and magically have help. Our days run together and we make it by flying by the ever-loving seat of our very own pants. So don’t feel bad if you lose your shit; it happens, it passes and then maybe two weeks later it happens again, but it will all pass and mostly your kids will remember the good times. Mostly.
Then there are moments like these:
Give back to the community as a family.
This past September and October we fluttered; which is an awareness and fundraising campaign for a non-profit group Unravel that raises money for pediatric cancer research. They also give money to families with children who are battling cancer. We created some great memories out there, but also along the way learned about bravery, empathy, kindness, and hardship. It is such a wonderful opportunity to help and learn all at the same time. So pick your cause and then fight it together as a family.
Being scared is human and also more than okay.
I am over-weight. I struggle with that a great deal. It would seem that it would be an easy fix, but so far it has not been for me. I am often afraid that people think I am lazy, undisciplined, and gross all because I can’t get a handle on my weight. Lately, I don’t even want to go out in public because of how I look. I know my life being crazy is an excuse, but still it has been hard to squeeze the “me time” I need into my days.
My best friend is coming to see me and I am terrified that she will no longer be my friend once she sees me. Totally illogical and off-base thinking, but it hasn’t stopped me from actually thinking it. But instead of brandishing myself for my fear; I am embracing it. It is okay to be afraid. I need to move past this fear because the most important thing is showing up and being seen.
Sometimes those damn Facebook quizzes have too much truth in them for a Friday night or any day of the week really.
So I know you take these because I have seen you post the results from time to time. Those FB quizzes; they suck us in because really sometimes we want to know who our Hollywood boyfriend might be, or what our name really means. So I took the name one and it was great, but it also said I was moody. And right away I was like you stupid FB quiz what do you know…you don’t know me. And then I took breath and was like damn you; how did you know that. I am moody, but I did not need my iPhone to tell me that. Sometimes it’s better knowing and being in a blissful denial than reading in black and white and I right or am I right?
Before I sign off I just want to take a moment and say thank you! Thank you for reading my blog. I have a great audience of friends, family, and internet friends that join here to read and support what I write and I am beyond grateful.
One of the first nominees I received was Trista. Trista is a mom of four. She also has a set of twins and just speaking from experience twin mamas are pretty tough.
Trista was nominated by Laura. Laura told me how Trista’s first grader underwent massive surgery last spring and recently one of her twins was diagnosed with autism. Trista is actively involved in Unravel (the organization dedicated to finding a cure for pediatric cancer and also to help get adequate funding for pediatric cancer research) the community and her church.
It was an honor to be present when Trista received her gift. Trista sent a thank you to Laura and I that let us know the gift came at the perfect time.
I started Holiday Cheer so that we could have the opportunity to take a moment and let someone know how much of a difference they make just by being themselves and showing up every day doing the best they can. Trista is such a wonderful person who is handling everything life throws at her with grace, humor, and strength. It was such an honor to be able to give Trista a little something to let her know how much she means to those around her and remind her what a great job she is doing. Trista you are an inspiration to all those around you.
Thank you, Laura for nominating Trista. Thank you, Trista for sharing who you are and your goodness with so many. The world is lucky to have you, I am honored to know you, and I wish you so much joy.