Tag Archive for: childhood cancer

Forever grateful…

/in , , /by

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Forever grateful…

Isabella and Sara

“I met Isabella one week before she was diagnosed at her birthday party. I was introduced to the Santos family through a mutual friend and was drawn to this kid the moment I met her. She had an infectious laugh, the sweetest voice and was a fighter from day one.

I loved just watching her run around playing, singing, taking her and her BFF Soliel to Chuck E Cheese, watching her grow into a young lady, watching her with Grant and Phi, loving on Jake the cat and Bailey the dog. BEING A KID. Just wishing it could all be normal for her.

One thing that I will be grateful for forever… Erin and Stuart allowed me to say goodbye to her. Coming in and seeing her and her worn out body, yet she managed a smile when she saw me. Just sitting there with her while Miss. Chrissy scratched her back. When leaving telling her that I loved her and her saying it back to me in her sweet voice is something that will never be erased from my mind.

10 yrs later, people that never met her love her. It says a lot about who she was. She was one in a million and the reason I do what I do year after year……for her ❤” – Sara Moody, family friend

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

There is nothing better than summer camp…

/in , , /by

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

There is nothing better than summer camp…

Isabella at Camp CARE, 2011

“Today we drop off Grant and Sophia for a week of overnight camp.

Grant is a 3 year veteran who pretty much threw stuff together in a big ball and was ready to walk out the door.  Un-phased per usual on leaving the nest or putting thought into preparation.  He has the confidence to meet new kids, spend time with old friends and live an independent life all week long.

This is Sophia’s first year at the tender age of 7.  She is exactly like Isabella as she packs neatly and stacks them just so as she crosses items off the list.  Each piece carefully thought through for every situation.  Her room is cleaned and all of her stuffed animals are tucked neatly in her bed.  She is of course worried about Jake the cat getting enough love while she was gone.  Her heart is bigger than anyone I have ever met.  The amount of hugs and kisses we will get will climb near 100 before we drop her.  Her excitement is building to spend a whole week with her best friend Anna, hoping they will bunk together with their flashlights under the covers, giggling as they trade stories.  It’s so precious to watch.

Isabella’s journey has given us two kids that have no fear of the unknown, new people or independence.  There will be no tears, just the thrill of the week ahead.  It’s a great thing as parents to watch.

Isabella at Camp CARE, 2011

Isabella was able to enjoy a week of sleep-over camp thanks to Camp CARE in 2011.  She mirrored Sophia, as they always seem to do.  No fear, just excitement and the planning was very detailed.  Stuart and I were so nervous sending her that year, but she was in such good hands.  We loved that for a week in the summer she lived like a normal, healthy child and had the memories of camp to hold on to.  No tears, just happiness.

Grant heads to Camp CARE next week, Isabella’s stomping grounds, to be with kids who are battling and siblings who of those lost their battle.  It’s a grounding experience for him each year and I hope that he can feel Isabella’s presence there, wishing she was there alongside him.”

-Isabella’s Mommy (June 11, 2017)

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

Isabella’s Cooking Show

/in , /by

Written by Connie Stewart, Isabella’s Grandma

Let me start off by saying that my mom is an amazing baker.  She is known for her German chocolate cake, coconut cream pie and brownies with homemade icing.  My daughter Amy is known for her many varieties of cookies and creative cakes and I dabble in baking a bit with cake pops and strawberry cakes.  If you know Erin, you know that she was more than happy to step aside and pass this trait on to Isabella.  She didn’t like the mess it created and would much rather pull out a roll of cookie dough from the refrigerator and have warm cookies in 15 minutes with no mess.  Erin would get out the mixer, point to the flour and sugar and say “There you go”.  But Isabella loved to bake and I was very happy to help her.  And I do mean, help her.  She was always in charge and I was the one getting the eggs, flour and various ingredients.  She would handle everything from there.

As far back as I can remember, she would pull up a little step stool and put on an apron and do whatever she could to bake something.  One christmas when she was maybe 5 years old, we got her an apron with her name embroidered on it and a baking set with measuring cups, measuring spoons and bowls.  The was so excited to break it open and begin cooking.  I think she actually fixed scrambled eggs for breakfast for us that morning with a little instruction from her dad.

But her favorite things to make were cookies, cupcakes and cakes.  One Easter weekend, Isabella and I spent the entire afternoon baking, icing and decorating a bunny cake complete with jelly beans and sprinkles.  She was so proud of it.  Later that night, her Uncle Nathan came over and when she offered him a piece he took a big piece of the bunny butt.  She couldn’t stop giggling about that and her infectious laugh made us all laugh too.

I think my favorite memory of her cooking skills came in 2011 when all of us were together for an ISF Face.  Another one of Isabella’s favorite things was spending time with her cousins.  Amy’s three girls were close to her age and she love just running with them and giggling.  One this particular day, the four of them spent hours planning a cooking show.  Actually, it was not just a cooking show it was “The Isabella Cooking Show”.  They decided to hold the show in the garage on the pink stage that her dad had built.  They designed a sign, wrote out a menu, and set up the stage and chairs for the audience complete with a microphone.  Everyone on stage had to wear a cupcake t-shirt and the color theme was, of course, pink.  They made blueberry muffins and explained the process which took an entire two minutes.  Isabella took center stage and stirred the batter over and over and over.  They had not quite planned what to do next so they passed around a microphone and took questions from the audience ranging from “How long do these muffins bake” to “Can Sophia help you?” which met with a resounding “NO!”.

One thing about Isabella and her baking was that she never wanted to eat the things that she made.  I don’t know if she didn’t care of the things that she baked or that she knew something I didn’t about what went into it.  Mmmmm… Either way, I loved the time that we shared doing this.  It was a time for the two of us to just talk and laugh.  She would tell me about things that went on at school, her boyfriend, Joey, or how her brother and sister were annoying her.  I would tell her about her cousins or ask her about some of the places she had been all while we continued mixing and measuring.  I know that she didn’t get it at the time, but for me, this was perfect.  It was my chance to share something my mom, my daughters and now my granddaughter enjoyed.

I know this year the Easter Bunny brought Sophia some baking supplies.  Hopefully I will get some ‘banking time’ with her too.

 

True Definition of a Mother

/in /by

She was amazing. We received the worst news of our life and she didn’t flinch. She took a leave of absence from work and moved her life into our home. She did all the unglamorous tasks. She changed diapers, she did dishes, she gave baths, she made dinner, she did laundry, and she stepped in when I had to step out. She also lived with Stuart and I during the most stressful time of our life. That task in itself was worthy of a medal.

She put her life on hold. She didn’t get paid. She CANCELED her own wedding, due to a relapse of Isabella’s.

She traveled with me to New York. She kept my mind busy while I had to wait for scan results. She raised Grant. She raised Sophia. She raised me.

She disciplined Isabella, which was a hard thing to do. She kept her in line and knew when to be her Grandma and when to be her Mom. She kept me in line and knew when to be my Mom and when to be my friend. No matter what Stuart and I were going through, she had my back. She would yell at him when I couldn’t and try to fix us when we were unfixable.

When Isabella would relapse, she would be my first call. She would talk me off a ledge and help me make arrangements. I would go to bed that night and wake up to a doorbell ring. There she would be standing on my front porch. She would drive through the night 12 hours to be there. I would break down when I saw her because she always knew what to do without asking.

She was as close as you could be without being right there. Which is a hard thing to explain. She wasn’t making the decisions but she was implementing them. She was giving medicine and catching vomit in buckets. She was rubbing backs and changing bandages, but she was never in the spotlight. She never wanted to be. She would just tell me over and over how we were making the right decisions and that we were strong and how proud she was of me but honestly she was right there along side us.

She took the lead on dangerous radiation treatments when Isabella relapsed in the brain. I was pregnant with Sophia and it was too dangerous for me to be around that amount of toxic radiation. So she stepped in and slept behind a lead wall, allowing her own body to be radiated so that mine wasn’t affected.

She was Isabella’s second Mom and Isabella knew that Grandma would take care of her. Isabella adored her and often times would want to be with her over me because they just had this connection. It wasn’t just Isabella either. She raised Grant. And if you see them together today, it’s a bond that is unlike anything you have ever seen. The love he has for her is close to that of a Mother and it should be. She was his Mom.

She was all I had when I felt like I had nothing. I could tell her anything – no matter how bad it was. Some days I was ready for Isabella to die and she is the only one I could say that to. She would hold me up when I was ready to fall and held my hand through everything. She is the only person that I allow to give me honest feedback in my life because she is the only person in my life that knows the true me. You also never realize how much you want your Mom to crawl in bed with you when you are sobbing until she does it. She never said anything. She just got in bed and let me cry on her.

And in the last week of Isabella’s life, it was painful for me to watch Isabella shut her out. No one was allowed to be with her except Stuart and I in the end. My mom had been there from the first day to that moment and Isabella put up a wall with her. My mom was forced to lay with her only when she was asleep. But she took every single minute she could. She once again took on the most unglamorous tasks like cooking corn casserole when Isabella craved it, only to watch her not eat it. “It’s okay,” she would say to me. “I’ll do anything she wants.” We even made her drive to get Grant the morning Isabella died. We should be shot for what we put her through.

I regret all the horrible things we made her do during those years. But if you ask her, it was the best gift we could have given her. It’s hard to put into words what people like her do for your life. Sometimes you are just given someone in your life that is a true blessing and you can’t imagine your life without them. I seem to shut out everyone in my life these days. But my Mom is the one person that will never see my wall. She is the person I strive to be in my life and what I get from her is the definition of a Mother’s love. I will never fully understand how she was able to give so much to us, or why she did it. But as I grow as a Mom, I start to see that I would do the exact same thing she did because the love you feel for your kids makes you do things you never thought were possible.

My Mom is the best person I have in my life. I love her for what she did for me, for Isabella and my family. She is the true definition of a Mother. I can only hope to be half the woman she is one day.

ISF Funds Frontline MIBG Therapy with the Children’s Oncology Group

/in , /by

In this picture is Isabella in MIBG therapy at CHOPT in Philadelphia. Isabella not only received this as a end of life treatment instead of a frontline therapy… she had to travel away from her home and family to receive it. This will be a game changer for kids fighting.

In 2016, funded a Frontline MIBG Therapy project with the Children’s Oncology Group (COG). The purpose of this project was to determine the effectiveness of pulling MIBG therapy, which was traditionally used as an end of life treatment, to the frontline of therapy for children with high-risk Neuroblastoma. We are excited to announce, thanks to your donations – this trial is ready for children across the country. Starting in August of 2018, the COG will start the process of enrolling over 800 children with high-risk Neuroblastoma and will enroll children over the next 3 years. Tomorrow night, Dr. Peter Adamson, Chair of the Children’s Oncology Group, will be with us here is Charlotte to speak at a private event about the advancement of the program. Can’t wait to share more updates.

This is great news for Charlotte because as you know, ISF has agreed to fund the creation of a MIBG at Levine Children’s Hospital! We are inching towards our goal of $1 MILLION DOLLARS and anticipate breaking ground in 2018. What this means is that in just one year, our local children will benefit from a trial that YOU supported in a room that YOU built. This trial hopes to reduce the number of children who relapse and reduce the burden of late effects of therapy. Amazing.

This is due to your support. So thank you. Children of Charlotte thank you.

We were so proud to have been able to donate a total of $175,000 to the COG through three of their children’s cancer trials and programs.  Learn more about the programs YOU helped us fund through the COG.