Another patient was successfully treated in the Isabella Santos Foundation MIBG therapy room at Levine Children’s. As a child and family enter MIBG treatment they receive a gift basket specifically paid for by last year’s ISF MIBG Ambassador fundraising efforts. Patients stay in the MIBG room 3-7 days after they receive their injection with parents/caregivers in the adjoining room, so our hope is that these baskets help bring a little comfort in their time away from their own home.
If you look closely at the note, this MIBG basket is thanks to Tim McBride… also known as McBeast! Thanks to Tim and his supporters, we were able to provide a few comfort items, snacks, toys and gift cards for food, gas, coffee, and more.
Levine Children’s Hospital is 1 of 20 hospitals to have a MIBG Treatment room in the U.S. and the only location in the Charlotte region. The two-room MIBG suite provides targeted radiation to pediatric neuroblastoma patients with minimal side effects. This therapy impacts kids fighting cancer beyond the greater Charlotte region and will eventually expand to include adults with rare tumors.
https://isabellasantosfoundation.org/wp-content/uploads/2019/12/MIBG-Basket_october.jpg20161512Rachel Woodhttps://isabellasantosfoundation.org/wp-content/uploads/2022/01/logo-animated-purple-1.gifRachel Wood2019-10-11 12:42:532019-12-04 12:43:27Neuroblastoma Patient Successfully Completes MIBG Therapy in Charlotte
This year’s ISF 5K, 10K & Fun Run for Kids Cancer presented by Red Ventures was extra special with our yummy brunch provided by Firebirds Wood Fired Grill, Tito’s Handmade Vodka, and NoDa Brewing Company! A huge thank you to our brunch sponsors for cooking up the most delicious post-race meal. Keep a look-out for next year’s menu! During the month of September we were able to raise just over $230,000! We couldn’t have done it without YOU!
Thank you to the businesses that made this new feature possible and who give consistently give so much back to our community…
Firebirds Wood Fired Grill went over the top to make sure brunch was like no other brunch you have ever seen! Gourmet brunch actually! The thought and time their Chef and team put into this event was impressive. The food options were scrumptious! Thank you to their team and family who planned, cooked and served their hearts out! Make sure you stop into one of their several restaurants for lunch or dinner around town… and let them know how good brunch was when you do!
Is there such a thing as ‘Cool Bar Setup’? If so, Tito’s Handmade Vodkaran away with it for sure! Tito’s also presented us with a $10,000 check at the beginning of the race which was a dollar for dollar match through the annual 106.5 The EndThe Woody and Wilcox Show Purple Ticket fundraiser. Tito’s has been so good to us over the years and we couldn’t be more appreciative of their support and partnership. We all drink no other vodka brand now… and hope you think about how companies give back when you make purchases.
It’s hard to express what the NoDa Brewing Company family means to our foundation. No matter what event we have, no matter what we are doing… they are right by our side supporting, giving our team words of encouragement and sending us notes of appreciation. NoDa not only brought out plenty of NoDa beer & spiked seltzer selections, but they brought out a huge group of their NoDa run crew. Having this family part of our special day gave us the chills. Thank you to every single member of the NoDa family for showing up big in Ballantyne. Next time you stop into the brewery, give them a thanks for all that they do!
The best part of this new brunch… we watched all our supporters run/walk together as friends and family. And then watched you all visit, laugh, hug and catch up over good food and drinks. That definatley was the icing on the donut! What a perfect day!
Next fall will be here before you know it, so SAVE THE DATE! September 26, 2020
https://isabellasantosfoundation.org/wp-content/uploads/2019/12/Fun.jpg6941000Rachel Woodhttps://isabellasantosfoundation.org/wp-content/uploads/2022/01/logo-animated-purple-1.gifRachel Wood2019-10-07 12:27:212019-12-04 12:27:432019 ISF Run & Brunch 5K for Kids Cancer Helps Bring in $230,000 for Pediatric Cancer
Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes. Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer.
Remember, it’s not about a month or a gold ribbon…
It’s about Isabella who fought neuroblastoma 5 times and ultimately lost her fight at age 7.
It’s about Madison who just relapsed from osteosarcoma when a tumor was found in her lungs. First time diagnosed, cancer was found in her femur. 6 years old.
It’s about Corey who is fighting stage 4 ewings sarcoma and the doctors recently discovered another spot on his pelvis. 20 years old.
It’s about Merritt who is enduring 42 weeks of chemo due to rhabdomyosarcoma. 2 years old.
It’s about Nicholas who just had a hip replacement because osteosarcoma was found in his bones and lungs for a 2nd time. First time diagnosed, cancer was found in his knee.17 years old.
It’s about Brinn who just finished radiation and moves into phase 3 of her neuroblastoma treatment. 2 years old.
It’s about Max who just learned he is in remission from neuroblastoma, but still has a long road ahead of him with immunotherapy and therapy for how the drugs have affected his mind and body. 3 years old.
It’s about Mackenzie who was diagnosed with DIPG and the doctors gave her 12-18 months to live. 3 years old.
It’s about all the other kids fighting cancer past and present.
It’s about all their moms and dads who would change places with their child fighting cancer in a heartbeat. Just to remove their pain.
It’s about all the siblings who have been affected by cancer just as much. And forced to watch their brothers and sisters suffer like no-one should.
It’s about all the caregivers and loved ones who silently cook meals, do laundry and bring comfort to kids, young adults and their families fighting.
It’s about all the oncology nurses, child life specialists, pediatric oncologists and everyone on these kid’s cancer care teams invested in their childhood cancer fight day and night.
It’s about listening and being aware.
It’s about bringing kids with cancer hope.
It’s about funding more treatment options.
It’s about ultimately finding a cure.
Thank you for listening, engaging and sharing this month. Thank you for donating. In the month of September, we raised $26,499.95 through the cancer warrior #ThroughMyEyes perspectives. We reached over 300,000 people on social media. We will continue to bring you updates on not only these kids, families and loved ones, but many more. Please continue to listen, engage and share. We count on you to help us open as many eyes as possible.
https://isabellasantosfoundation.org/wp-content/uploads/2019/10/Sept-series-final-result.png800800Rachel Woodhttps://isabellasantosfoundation.org/wp-content/uploads/2022/01/logo-animated-purple-1.gifRachel Wood2019-10-03 11:58:152019-10-03 11:59:24Through My Eyes: Final Results
Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes. Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer.
[#ThroughMyEyes | Rachel Wood] September 19, 2011… I accompanied Erin and Isabella to NYC for scans at Memorial Sloan Kettering. After a morning at the hospital we headed to Magnolia Bakery for a VIP baking experience… where this short clip above was taken.
In the clip you see Isabella and Erin baking cupcakes. What you don’t see is Erin’s shaking hands and the tears she is fighting hard to hold back. She had just stepped outside to take a call from the hospital asking her to come back to meet with the doctors right away.
On September 19, 2011 the Santos’ were told Isabella’s cancer had spread. It was in her head, bones, bone marrow, chest, abdomen… the disease was everywhere. The doctors explained that the surgeon would no longer operate and high dose chemo was not an option. The new disease in her head was bleeding and the immediate concern was swelling and seizures. The oncologist said to go home. Be with your family. Do things that make Isabella happy.
This is where MIBG therapy came in and gave 10 months of life and memories to Isabella and her family before she passed away from neuroblastoma on June, 28, 2012.
This NYC trip forever changed me. I don’t have a child with cancer and I don’t know what it’s like. But I watched it. I watched what it does, the pain it causes and the life it rips away. My eyes have been open to childhood cancer ever since.
Not everyone has a front row seat to the impacts of childhood cancer. I hope you are never given one. But that was my goal of the ‘Through My Eyes’ series, to help others open eyes, even a little bit, to what pediatric cancer is doing to kids, young adults and families. I normally spend quite a bit of time with cancer families, but the past 2 months I have spent that time asking the really hard questions, listening to the fears and pain. It has been the most rewarding yet most emotional taxing several months. I have talked, listened, planned, written & taken photos of cancer. I have lost sleep & dreamed about these kids and teens – awful dreams. I have gotten attached. But my emotional rollercoaster is nothing compared to what these warriors and their families go through every second of the day.
Thank you to those who opened up their hearts and homes to me specifically for this series. Thank you for letting me ask the really hard questions. Sharing awfully intimate details & thoughts. All to bring awareness to our supporters on what cancer has done. All in hopes that it will bring change.
On this last evening of Childhood Cancer Awareness Month, I beg of you to please not let a month or gold ribbon define awareness and action. Please continue to talk, share, volunteer, ask questions and give back.
Thank you for listening this month. We look forward to communicating how much this series raised for pediatric cancer research. If you feel moved to donate, we appreciate every penny and are humbled by your support.
https://isabellasantosfoundation.org/wp-content/uploads/2019/10/IMG_0551-2.jpg17331294Rachel Woodhttps://isabellasantosfoundation.org/wp-content/uploads/2022/01/logo-animated-purple-1.gifRachel Wood2019-10-03 11:53:372019-10-03 11:53:56Through My Eyes: The Day That Made Me a Childhood Cancer Advocate
Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes. Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer.
Perspective: Cancer Family
Name: Tom & Lynn (parents), Kayla & Noah (siblings)
Daughter: Mackenzie, 4 years-old
Cancer: DIPG
Diagnosed: June 22, 2018
Treated at: Levine Children’s Hospital
4 year old Mackenzie was diagnosed 15 months ago with an inoperable, non-curable brain tumor called DIPG. We shared perspectives from her mom and dad on what’s going through their mind during scary and uncertain times: We Are Cancer Parents & Behind the Minds of a Family Fighting a Terminal Cancer Diagnosis. Read how Mackenzie’s terminal cancer diagnosis affects her siblings as featured on our social channels (Instagram & Facebook) on 9/25/19.
Kayla (12 years old) with little sister Mackenzie
[#ThroughMyEyes | Kayla Barron] “Empty. That’s how I feel. It’s not just one thing that makes me feel this way. Its many things stacked on top of each other to create one word. One word that means a whole bunch of things. One word with thousands of meanings behind it. One word that explains everything. It’s almost like being numb to a certain extent. Sometimes you feel and sometimes you don’t. Other times you choose how you feel. Are you going to brush off what’s bothering you, or will you choose to embrace how you feel?
Most of the time I don’t talk about it, mainly because most people wouldn’t understand and nobody really asks. And I think that’s one of the hardest things about being the sibling of a cancer patient. Mom and Dad are always focused on the sick child, then they have jobs to deal with, the family to feed, bills to pay. It’s not easy. Nobody said it would be. Eventually you get used to being overlooked. Not saying just because you’re used to it, doesn’t mean it doesn’t still hurt. Of course it still hurts, pain doesn’t just go away like that. It’s always there no matter how hard you try to cover it up. Pain will always be there, even if you got over it, even if it doesn’t bother you anymore, even if you forgot about it. That pain will always come back.
And in that moment, when the pain comes back, you just have to stand up look yourself in the mirror and say, “I believe in you”. Because you can’t just give up as soon as one thing knocks you over or one person says you can’t.
I know what it’s like to feel empty. Broken. Lost. It makes me feel like no matter what I do or say, I make things worse. I make things harder for everyone else. I feel like I try so hard to make everyone happy but in the end I always feel alone. Because I took all my happiness and gave it to other people, not leaving enough for myself. And that’s where it goes downhill. Where everything just seems to stop and you couldn’t care less about what happens next. Because in that moment, emptiness, becomes your only feeling. But even after this happens somehow, some way you still manage to put a smile on your face.”
Noah (14 yrs old) with little sister Mackenzie
[#ThroughMyEyes | Tom Barron] “I lost my father when I was 16, I’ve never truly recovered from that, I’ve fought my whole life trying to figure out why it’s bothered me so much… I never got the chance to make him proud of me. I don’t want Noah or Kayla to grow up wishing they had done something different.
Noah is high functioning Autistic and Aspergers; it’s hard enough for him to function in regular everyday life. I worry this tips the scales in the wrong direction and he chooses to give up instead of fight.
Kayla is a different child all the way around. She has passion, is artistic and outgoing. I fear she feels unheard, unwanted, unaccounted for, when in reality we spend effort to make that not true. I fear she takes her pain out on herself and not let us help. I fear she starts cutting again and we lose her too.”
[#ThroughMyEyes | Noah Barron] “I am heartbroken. It crushes me, emotionally, to know this horrible disease exists and little to no progress has been made to cure it. I constantly question in my head… how long does she have? How long until she shows symptoms? Why did it have to be her? And wondering if the tumor will grow. So for now I live in the moment and pray to God for guidance. I listen to Imagine Dragons, talk to my friends and my therapist to try and let out my pain.”
Noah (14 years old) and little sister Mackenzie
[#ThroughMyEyes | Lynn Barron] “I worry that I am not listening to them, that they feel left out and how is that impacting them. Most, if not all, of the focus is on Mackenzie. People often ask how Mackenzie is doing and just assume Kayla and Noah are fine. When in fact, I don’t think they are fine. I think they feel left out. They are hurting. They are watching their baby sister take medicine they know is not healing her, but merely keeping her tumor stable. I often wonder what they are thinking and feeling. They are two very different people.
Barron Family: Noah, Lynn, Mackenzie, Tom, Kayla (L-R)
Noah is on the spectrum. He is high functioning autistic / Asperger’s. Which means he is highly intelligent, can articulate thoughts well, but lacks in some social skills. He can get hyper focused on one topic and doesn’t always know when to move off the topic. He presents his own challenges because we often don’t know how he is feeling as that is sometimes hard for him to express. He sees things in black n white.
Kayla on the other hand, is beautiful, creative artist and can express her thoughts and feelings very well when she wants to. However, she internalizes a lot of her emotions as well. Especially when it comes to her sister. She feels left out and unseen. Her whole life she has been dealing with the focus primarily on Noah and his autism, as that has taken a lot of our attention. Then she gets hit with her baby sister having an inoperable, non-curable brain tumor and is most likely going to die in 12-18 months, according to the doctors. How would you handle that?”
[#ThroughMyEyes | Kayla Barron] “My thoughts are kinda fuzzy. I don’t try to think about it too much. But it’s always in the back of my mind. I’m just always worrying. Is this the last birthday I’ll spend with her? Will she get to go kindergarten? Will she reach my age? Is this her last Christmas? Will she make it to Halloween? What if something happens? What if I lose her? What will I do then? Will anyone care? Will they forget her?
I’m just so scared of what could happen. There are so many possibilities. You never know what’s gonna happen next. I just don’t want her to be in any pain if the time comes. I don’t even want to think that the time will come, but sometimes I do.
Kayla (12 years old) with little sister Mackenzie
When nothing else makes me happy… she does, so what will happen when she isn’t here? She’s my best friend from day one. Even if she doesn’t understand half the time. I’m just not even sure what I’m gonna do.
What I am most scared about is if/when something happens there will be nothing I can do to help her and all I can do is sit there and watch her suffer. I’m also scared that I’m going to think it’s all my fault and I wasn’t a good enough sister. I’m gonna have to think about all the things I didn’t get to do with her. I just really don’t want to feel like I have nothing left again.”
Noah, Mackenzie & Kayla Barron
[#ThroughMyEyes | Lynn Barron] “For both our children, I worry about how the experience of having a baby sister with a terminal illness is shaping them. I think about what lasting impacts this will leave and what scars will remain. Is this something they can turn from a negative, sad experience into something positive and impactful?
We all have choices. To look at this as a tragedy or as an awakening.
I don’t know how this experience is going to shape them as adults. Only time will tell. I pray, they are able to draw from this experience and turn it into an awakening, a movement, something that drives them to be better, to express kindness, to seek victory in the small things in life and ultimately to cherish every moment they have and take nothing for granted.”
No child should have to endure what Mackenzie might have to. No family should be on pins and needles every second of each day questioning if and when the cancer will start taking over. No sibling should be worried about watching their little sister suffer. It’s hard to read. But it’s this families real life on how childhood cancer has affected them. We applaud them for the courage to let our supporters in on their innermost thoughts and pain. This is childhood cancer. Are you aware now?
https://isabellasantosfoundation.org/wp-content/uploads/2019/09/POST5-2.jpg23962396Rachel Woodhttps://isabellasantosfoundation.org/wp-content/uploads/2022/01/logo-animated-purple-1.gifRachel Wood2019-09-25 13:55:452020-01-20 16:09:44Through My Eyes: How a Little Sister’s Terminal Cancer Diagnosis Affects the Siblings Too
