Tag Archive for: pediatric cancer

I didn’t want to forget…

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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.

Miss Chrissy and Isabella

I didn’t want to forget…

“June is a hard month.  I couldn’t imagine what it’s like for Erin and Stuart, but it is certainly a hard month for me.  I think back on all the little things that I used to run around town doing with Isabella.  Silly things really.  But things that we did over and over, at places we considered our stomping grounds that made us both happy.

Red Lobster, I won’t go back.  This was Isabella’s all time favorite restaurant.  But I can’t find it in myself to step foot in a Red Lobster.  Janie and Jack, I won’t step foot in that store.  Isabella was very finicky with what she wore and the shoes she chose.  Boy did we make a good shopping team.  But I can’t find it in myself to step foot in a Janie and Jack or look that way when in the mall.  Genghis Grill, I won’t visit that restaurant ever again.  Isabella loved the little corn on the cobs and I laugh every time that I think of those darn things.  But I can’t find it in myself to eat at Genghis Grill. And after most food stops or shopping trips, we would pick up something chocolate.  Isabella loved chocolate.  Decadent and rich… something that only an adult size man could eat.  But she would eat every single bite, drink a large glass of milk, and laugh the whole time.  She knew that milk grossed me out and loved every second of it.

I can’t visit our old stomping grounds, but I keep her close to my heart at home in different ways.  Isabella’s art is hung up in my kitchen facing the microwave.  She would cook pop corn every time she came to my house.  I thought this was the most perfect spot, another memory of something we would do together.  I don’t notice it every day… but when I do it certainly stops me and makes me smile about all the times I had with her.

I try to go to her gravesite every couple of weeks.  I want to make sure all the weeds are pulled, all the dead flowers are removed and fresh ones are put in their place.  I never want Erin or Stuart to visit and see things that would hinder them from feeling her spirt.  And others visiting other graves…. I want everyone to know how special this girl is and the mark she is making.

And in the end the one thing I remember the most… I just didn’t want to forget.  I would rub her arm and her head (I loved that bald head) over and over as we cuddled.  I had to force myself to remember what she felt like.  I didn’t want to forget.”

– Miss Chrissy, Isabella’s best friend & family friend

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

Holding on to every last minute we can…

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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.

Holding on to every last minute we can…

Father’s Day 2012

“She slept most of the day but was anxious to take Daddy to Red Lobster that evening for a Father’s Day dinner.  She mustered up the strength to put on a pretty dress and comb down her bed head.  We wrapped up his gifts which were a new water bottle with her artwork on it from school and a recordable story book.  I bought this adorable book that is about how I am always thinking of you or want to be with you when are away.  Very cute book but means even more when it is applied to Isabella.  I worked with Ib for about an hour on Friday night, recording her reading each page.  It is so priceless.  She and Daddy went out to eat and she tried her very best to not be sick at dinner.  But she struggled so much as she waited for him to open his gifts.   They had to get dinner to go because she just wasn’t well and the minute he put her in the car, she vomited.  They walked in the door with a full vomit bucket just an hour later.  I cleaned her up and put her to bed, giving her meds to knock her out.  I feel so awful for Stuart and I know how hard that dinner was for him.  He is breaking inside and sadness and pain are words that don’t even begin to describe it.  The anniversary of his Mother’s death from cancer is this week and his birthday is on the 24th.  I’m sick about the fact that I know Isabella is now going downhill and I just hate to think his birthday will hold this cloud over it forever.  It’s like the last slap in the face after all of his hard work to keep her alive.  So unfair and undeserving.  But today I will do the best I can to give him a wonderful Father’s Day.  We both know that it is the last Father’s Day he will have with 3 children, maybe even the last Sunday breakfast with 3 children.  All we can do is hold on to every last minute we can.”  – Isabella’s Mommy (Father’s Day 2012)

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

Forever grateful…

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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…

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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

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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.