Tag Archive for: childhood cancer

The before times…

/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.

Aunt Amy and Isabella

The before times…

“Newborn Isabella. That very first day. It’s one of the best memories for me. Rushing to the hospital to meet this tiny person who had, in a moment, made my sister a mother. The biggest eyes looking around with a puzzled expression, like a little old man who may have gotten off at the wrong stop. Tiny clenched fingers holding my own. Skin smelling that newborn smell and wrapped in that ubiquitous hospital blanket-the white one with the blue stripes, you know the one I mean. And me just holding her and marveling. My niece. My first niece. Erin is her mom. Forever, Erin is Mom to someone now. How crazy is that? Whispering in her ear that I loved her, how excited I was she was here at last, how much fun we would have together, how she was going to have so much fun with her cousins, when everyone grew a bit more, of course. It’s an ordinary moment. If we are lucky, we all have those moments-meeting the tiny people that first day. Whispering in their ear that they are loved and part of a family. Feeling that rush of emotion at the passage of time and that euphoria and that pure joy. It’s a feeling like no other. And I had that with Isabella. Holding her and marveling. She and I just looking at each other. Planning in my heart a lifetime of secrets and memories and adventures and stories and love together. I stayed in the hospital with them that night and loved waking to talk to Erin and listen to Isabella make those strange baby noises all night. Change her diaper. Hold her. Just let that joy, that happiness, for Isabella, for Erin, for the whole family, just soak right into my heart. I didn’t sleep much, but it was one of the best nights of my life.

At that point, I have to stop the memory sometimes. Because the sweetness is almost a pain. I don’t take that memory out to look at often. But I love memories like that one, of just the ordinary moments of the before times. Before cancer. Before ports and doctors and treatments. Before the Foundation. Before Isabella had to race for anything. When Isabella was just my amazingly gorgeous newborn niece and I was her joyful aunt. The pain of this memory is that I expected, holding my niece in the dark night of that hospital room, to have a million more ordinary moments with her. A lifetime of memories of shenanigans and secrets and stories and fights and drama and accomplishments to celebrate. Of Erin calling me and telling me what Isabella was up and me telling her about my girls. And that’s how it was going to go. But it didn’t. And so I tend to horde my memories of Isabella. My heart was ready for so many more than I have, so I guard the ones I have a little jealously. But I do want to share that one with you, that first night. Those whisper and her big eyes. Her warm body against my chest and all that joy.”  – Isabella’s Aunt Amy

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

Taking each day for what it is…

/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.

Taking each day for what it is…

Isabella and Grant

“The majority of my days are spent in the bed with Isabella.  I try to lay with her in the morning until around 4 each day.  We don’t do much in the bed.  Occasional meds, back rubs, small conversation.  I’ll get her up and put her in the bath with me to make sure she at least feels clean every day.  But with each bath, I look at this girl and can barely see my Isabella in there.  Her stomach is sunken, ribs showing every bone.  Her shoulder stick out like they want to punch through the skin and her spine shows each vertebrae.  I can no longer carry her with my hand on her back because it just upsets me too much.  Her pain comes and goes and when it comes, it seems harder to get on top of.  We have increased her pain patch and the nurses are coming out tomorrow to show me how to push meds through her line.  I think it’s my last step in becoming a full nurse for her.  It’s what I want though.  I feel like I want zero help from the medical profession going forward.  It just is too personal to me at this point so I’m starting to even close them out.  I know I am driving them crazy but they deal with me the best they can.  I know they mean well.. but it’s just hard.  We have days where the pain is so intense that she starts vomiting over and over.  We wonder if things will start to turn for the worse, then the next day is quiet and she sleeps all day.  One night this week she started to become disoriented and had trouble speaking.. but then cuddled up and slept through the night.  It’s hard because we come to peace with things and what is going to happen, and then she walks downstairs and eats a bowl of ravioli.  But just as quickly as she appears, she disappears yet again.  Her counts are sky high so we aren’t needing transfusions.. which is odd because we were told to expect transfusions because the neuroblastoma and radiation will start to knock them down considerably..  But that is not happening.  We think she will only make it a couple of days and then a week goes by.  A horrible night followed by a day up and chatting with me about how my birthday gifts for daddy are “not fun” and she wants to get him something fun so we search the Internet together. Really???  I honestly don’t know what in the hell we are doing.  Stuart is trying to stay busy with work or the house, Grant is in camp, Mom is entertaining Phia, Stuart’s Dad is helping him with whatever is bothering Stuart and Katherine is organizing my pantry.  It’s honestly a very weird house right now.  But, we are just taking each day for what it is.. another day with Isabella.

While we are all trying to come to peace with things, Grant is beginning to struggle.  He is having moments of tears that come from just seeing a picture of them together.  Nightmares, night sweats and the constant need to be right next to me, let me know that he is grieving.  He misses her.  He comes and gives her hugs when he leaves and constantly says, “tell Isabella I love her”.  Even today he came in and sat next to the tub while Isabella and I took a bath.  Just talking about whatever came in his head.. but it just felt normal to him for a minute.  They talk as if nothing is going on.. he tells her that her hair is coming in good, or they talk about how library day will work next year at Marvin, what happens when people have surgery, his new Spider-man book.. whatever.  He just wants to be there.  I’m amazed he doesn’t mention the look of the body he sees in the water.. he notices it I’m sure.  I know the key will be keeping him active when this process comes to an end.  I’m looking forward to giving him the attention he deserves and getting to connect with him again.  Right now the kids get me in doses of when I’m downstairs for a bit.  They light up when they see me like it’s been weeks since I was there.   I sit on the couch with Grant and Sophia and they both take my arms and wrap them around their bodies.  It feels wonderful.”  – Isabella’s Mommy, June 21, 2012

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

I didn’t want to forget…

/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.

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.

Just one more minute to tell her how grateful I am…

/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.

Just one more minute to tell her how grateful I am…

Isabella and Daddy

I wish I could say I love Father’s Day. For me, it’s simply a tough time of year. Heck, let me put it blunt… a shitty month overall.  As fast as it comes every year, I wish it would just be over with. God how I wish I could just push this dark cloud away and enjoy this time of the year. But I can’t. So many of my last memories with Isabella took place over this holiday time period. I can recall every minute of opening her last gifts to me, both at home and at Red Lobster, the last time we ever went out – her favorite restaurant in the world and she couldn’t even enjoy it. Not to mention, the endless hours of lightly scratching her back as my arm cramped up and yes, I kept on doing it no matter how much my arm hurt. What else could I do my baby girl was dying, right there in front of me.

For the sake of Sophia, Grant, (and Erin), I’ll bury it on Father’s Day. I’ll get excited when they celebrate the day, shower me with hugs and homemade surprise gifts. Oh yeah, I’ll play the part. They all deserve it. I know they love me dearly and I know I couldn’t have moved on without their love. The kids continue to love me in such unique ways. Grant is so confident and funny. He truly cracks me up on a daily basis, and I have this deep belief that we will be best friends forever. And Sophia, oh lordy, she has been my rock. She fills up my love bucket like no other. She’s hugged and kissed me through my hardest times. Not sure I’ll ever let her move out. But obviously, someone is still missing. I’m told to focus on who’s here and be appreciative but on Fathers Day, I just wish I could have one more minute with her. To tell her how grateful I am – and always be – to be her daddy.  How much I miss her hugs, laughs, her voice and her love. She made me a better person and being her dad, and with Grant’s and Phia was my greatest gift.  She taught me how to be a dad, or maybe more truthfully, she broke me in. Our memories together are not any better than others I have or will experience as a father… they were just ‘my first firsts’. Grant gets some of the firsts now, but for me, those initial 7 years were really the wonderful learning experiences and I’m changed forever.  Those will always remain my greatest father day gifts.

I know there is part of me that has changed. I am and will be slightly broken forever, but I wouldn’t take back a minute that we spent together. Not one minute of pain if it meant I would have to give one minute of happy time together. I love you each so very very much and hope to have many, more Fatherly moments together.   Love you always, daddy.”  – Isabella, Grant and Sophia’s Daddy

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

She was the love of his life…

/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.

She was the love of his life..

Isabella and Daddy

“Even in the end, he did all the things I couldn’t do. He chose where to take her to be cremated because I could not know where that building was located in Charlotte. He picked out the beautiful gold box she was placed in, he paid for her final resting place, he spoke with the pastor, he bathed her after she died and carried her out of our house. There are things I was not strong enough to do, but he was. He didn’t think twice about doing them because for him, it was just more ways he showed his love for her.

He hasn’t been the same since she has left us. I don’t think he has ever experienced true love like that in his life. She loved him unconditionally and he has never loved someone as much as he loved her, including me. What they had was unique and every daughter should be so lucky to have a father love her the way that he did. He would of done anything to save her and she was the love of his life.” -Isabella’s Mommy

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