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RubyWarriorPrincess Fights Leukemia

$39,356 of $100,000 goal

Raised by 350 people in 5 months
Created October 15, 2018
RubysTribe
on behalf of Gayle Russell McCauley
Ruby Grace, light of lights, you make this world infinitely more bright!  As many of you know, our dear friends daughter, Ruby Grace McCauley , was diagnosed last November with B-cell Acute Lymphocytic Leukemia (ALL). For the last year, her family, Gayle, Dan and brother Benjamin (along with a bevy of the most amazing grandparents, uncles, aunts, and dogs), took on the most difficult challenge any family can face. We watched them do this with grace, heart, fierceness, determination and that deep well of love that comes when you are helping your child fight Leukemia. They went through every heart ache and sorrow, they also created a space for happiness and light – making Ruby’s fight a fierce, and even unbelievably, joyous one.  Every accomplishment celebrated, every moment treasured.  This family is truly one of the best – hearts of gold, each and every one.  They included their family and friends, counted on so many to help them through almost 365 days of struggle.  They could not have gone through this year without all of you helping in your own unique and beautiful ways.  As of a week ago, Ruby was at the end of her first year – shining bright, back to school, her new hair coming in, running and giggling with her friends again.  Gayle and Dan thought they could take a breath, and then, the unthinkable happened.  In one night, Ruby’s pain came back, she spiked a fever, and they drove back to UCSF.

They got the heartbreaking news that the Leukemia was back...this last week they have been in complete shock, numb, terrified, and heartbroken.  Ruby had seemed to rock every single scan, was on fire, and yet, the Leukemia has returned.  This time, because of the Leukemia returning so suddenly and quickly, the fight will be even more intense.  First, this moves Ruby into a higher risk category.  They will have unimaginable hurdles, including higher doses of chemotherapy to get Ruby into remission again, higher resolution testing and ground breaking immunotherapy, which has only been on the market for the last two years.  It is unknown how long this will take to bring her Leukemia cells to zero.  At that point, she will need a bone marrow and/or stem cell transplant (and DONOR MATCH! ), which requires another 6-week hospitalization.   She will then have to be in an isolated, sterile home environment for at least the next 6 months. All of this is to say, they need massive financial help as many of these costs are extraordinary and unforeseeable, as groundbreaking new treatments and extensive care.  

Gayle and Dan are going to need so much support. This feels harder than before. They are gutted and are still in the process of absorbing the news and what will come next.  For now, if you have a child who knows Ruby, please tell your children that Ruby’s pain in her leg came back so the doctors decided to change her treatment.  She has overcome being the “sick” child, which was very difficult for her.  Many people are reaching out to see how they can help – truly the biggest way right now is financial.  Each nugget of gold is received as love and will support our Warrior Princess Ruby!  As I said before, this is going to be long winding, extremely difficult, hopefully magical & mysterious path and journey for the family, and for all of us in their community that are committed to supporting them.  Let’s remind them that we’re all in it for the long haul, day by day with Ruby and her family.  Let’s shower them with our love in the form of financial support, in hopes of making this journey a little more bearable.  Every little bit makes a difference….the power of a village is unparalleled!  SHARE, SHARE, SHARE this story….they need it all!

In gratitude and love,
Jenny and all Ruby's Warrior Tribe

For those of you who want to stay up-to-date on Ruby’s progress, Gayle has created a FB page, Ruby the Warrior Princess,  where she writes beautifully, if not heartbreakingly, about this process.  Her love and unstoppable advocacy for her daughter is profound, deep, palpable and heart-moving.

Bone Marrow Match  - we will also set up a drive for this but Ruby needs a match!  Her family will be tested first, but please feel free to get tested now!  Also, this can help another child who may be in a similar circumstance.
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...APB...APB...Attention, Attention...this very ordinary day just turned into an EXTRA, EXTRAordinary LOVE and HAPPINESS DAY…if you have not heard the news…be prepared to have you heart burst with joy, like a 1,000,000 rose petals released on your head, all at once! Ruby Grace McCauley has 0000000000000000000000000000 Leukemia cells in her body. She is FULL OF SUGARn’SPICE n’JOYn’LOVEn’FEROCIOUS PRINCESS WARRIOR CELLS!!!!! Bust out the Sparkling Juice, the Champagne, the Rose infused Water…it’s time to take a deep, deep breath, and CELEBRATE this family’s amazing news. Bone Marrow Transplant is ON…Leukemia is OFF…perfectly fitting that every store is bursting with flowers, balloons, chocolate, and signs of love abound! Each of you have played such important roles in this families ability to survive this last year and a half, of which the last 4 months were spent within the confines of the hospital. They have lived off love, given so freely, deeply, completely by each of you. Please know that everything you did, mattered! For a more in depth update, see Gayle’s post. Can I take a moment to raise up my hands in utter respect for Gayle, Dan, each and every grandparent, Benjamin, and of course Ruby Ru for going through this harrowing, gut-wrenching, and traumatic experience with what I can only describe as AWE-INSPIRING LOVE that transcended all of it…they radiate with LOVE and remind us that anything is possible. The journey continues…Ruby will start the next phase on Feb 23rd, in which she will prepare for her Bone Marrow Transplant…take a moment on this Valentine’s day to celebrate LOVE – let’s keep our attention and love on this family as they roll into the next phase. I have not had the time to thank all you individually for your generous and continuous donations to Ruby, but please know, it is noticed, felt, taken in and so, so deeply appreciated. LET HER EAT CAKE! in love and gratitude, Jenny
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11:30am New Year Ruby Princess Warriors! It’s the time…your holiday prayers, dances, calls under the moonlight, donations, love notes, cards, gifts, whatever you did, worked! Ruby found the right chemo bridge to help her get to today….to this moment…11:30am, January 7, 2019! I have copied Gayle’s post from yesterday as felt this is one of the most important days in her care…may we all have our attention and thoughts on Ruby and her family today and this week. To this new year being a time of radiant health and wellness for Ruby. Thank you for all of your overwhelming support and care for this beautiful family. T-cells…do your thang!
From Gayle…”after a super crazy 3 weeks of trying different bridging chemos, scary reactions, things not working, numbers escalating, nose bleeds, rashes, Christmas and New Years at the Hem/Onc Unit, we’re here...patiently waiting for Ruby’s Car t-cell infusion. Today is the day!! Little’s leukemia load is heavy, this we know, but her ✨magic✨ car t-cells are ready, we’re ready, our team is ready and most importantly, Ruby is ready. Ready to make a change. These cells will enter her precious body at 11:30am and go straight to work. They will attack and destroy her B-cells. (Ruby has B-cell ALL). They are engineered to multiply in the presence of her leukemia cells. We know we’re in for a turbulent ride, but with Ruby at the wheel, there’s not a doubt in the world. I can’t express how much pride I have in this little girl. She’s a force...I’ve never experienced anyone or anything with vibrations as powerful and vibrant in my life. She’s got this. Lift her in your prayers.”
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It’s the day before Christmas, and all through the hospital...sweet fairies and elves are making it possible, to bring joy and delight, to our Ruby Warrior Princess of Sugar and Might! Once again this community has found truly awe inspiring ways to support Ruby and her family. A local family, whose own grandmother passed down the tradition of picking one family to create Christmas for, took on Ruby and her family this year. Ruby and Benjamin got to delight in making their lists for Santa…grandparents were included…in a week, thanks to many school families donating, wrapping, older girls happily giving away their American Girl dolls and accoutrements, the list was complete, and Santa’s sleigh dropped them off. Another local lady helped create a dine n’donate …many families came to eat and be merry in honor or Ruby. Meals continue to show up…a Christmas tree and presents showed up at the hospital…there is nothing this large, international community of Ruby supporters won’t do!
Unfortunately, it has also been one of the hardest months to date. I wanted to do a quick update before Christmas, as Ruby and her family need your prayers and love to surround them. This last month has been a time of upheaval, heartache, fear, and many unknowns. Using Gayle’s update from last week the gist is that Ruby started her new Blinatumomab immunotherapy treatment about a month ago. Unfortunately it was not successful and after only a day or two at home, Ruby’s leukemia had a resurgence, and landed back in the hospital. This was a huge blow. An incredible team of doctors came up with her next treatment option, CAR-T cell therapy. Last Monday, Ruby had her T-Cells harvested for CAR-T cell therapy. She is one of 100 kids participating in a study based in Santa Monica (KITE Pharma). Her own t-cells will be genetically altered to fight her leukemia cells. This is a newer therapy on the market; is aggressive and fast acting. Her new car-t cells will be ready in a couple of weeks.
She has currently been on a low dose of daily chemo to try to get her leukemia load down, but as of the last few days, it is not holding the leukemia at bay. The counts keep rising, so they tried another combo of two chemos, to which, she had such a serious reaction, they had to stop. They tried another combo last night, no reaction, but no change in her counts. What everyone can visualize, pray for, or hold dearly, is that they are able to find the right dose of chemo that both her body can handle, and that brings the leukemia counts down. This is a very serious moment in her care. Please take a moment today, tomorrow, this week, to light a candle, sit under the moon, invoke the strength of warriors, write a poem, dance a silly dance, or do whatever feels right to help envision this beautiful girl becoming strong and healthy in her body!!! This GIRL IS BRIGHT…she is JOY. I have chills just thinking about how many people treasure her, have supported her, and have shown up. Gayle and Dan are truly humbled, gobsmacked (as she put it), and overwhelmed by the love that has poured in. This is the most difficult time of their lives, may their Christmas tomorrow be filled with love and light, as may all of yours. All my love and gratitude to all of you for your generosity and Santa spirits! Much love, Jenny
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Dear Ruby Warrior Supporters! Well, we have almost hit $30K – who wants to bring us over the top??!! : ) Amazing what a mighty village of love can create. It’s been a rough week or two for Ruby and family. The high doses of chemo are finally taking their toll. As Gayle noted, the chemo has all but knocked her completely down. She has struggled with dangerously low blood counts, mouth sores, fevers and rashes, and her hair is beginning to fall out again. But, she has hit the last day of her first stage of relapse treatment for Leukemia.
That being said, my daughter Izzy and I got to visit her last Friday. What can I say about this girl that we don’t already know….she is REMARKABLE! That bright light of a whimsical, silly child is still fully intact! Within minutes she had us in stitches…talking about the endless beeping noises, pokes, early wakes, her tree (IV contraption) that runs out of battery just as she gets free…stopped in the hall when there is air in the line…her storytelling and humor was priceless…didn’t miss a beat. She waits patiently for the one hour she gets to go the play room, her small freedom in the day. As we left the playroom, Ruby embraced the moment in the hallway to be a kid, making happy faces out of play dough on the windows, looking out over the beautiful water. Izzy entertained her with ridiculous dancing and hearing her giggle felt like soul medicine. Numerous doctors and nurses passed us, each knew her by name, each so happy to see her out laughing. You can feel their love and tenderness towards their young patients, allowing them, as much as possible, to be happy and free.
She will have a bone marrow biopsy as soon as her counts are higher. This test will see how her leukemia responded to the first round. Now is the time to pray for remission so that they can begin the next step.
Each step of this process is uniquely challenging and overwhelming, but done with heart and resilience day by day. I continue to be floored by Ruby’s capacity, by Gayle & Dan, and also their immediate family that is spending days and nights by their side in the hospital. Thank you for keeping this girl close to your heart. They need it all! Continue to share…to support how you can…no amount too little as received as large doses of LOVE! Thank you all for your generosity and kindness. Love, Jenny
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$39,356 of $100,000 goal

Raised by 350 people in 5 months
Created October 15, 2018
RubysTribe
on behalf of Gayle Russell McCauley
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