The before times…

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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.

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…

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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.

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.

Things we hate to do, but still need to be done

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Things we hate to do, but still need to be done

I get it.  It’s not a fun thing to do.  You may drive all the way to the center and get turned away.  It’s cold in there.  It may take them a couple of tries to find a good vein.  You are worried you might pass out.  It might be uncomfortable for a while.  It’s boring.  It may take a little longer than you want it to.  I know all these things that go through your head, because they go through mine too.

You would think after our family’s experience, I would be giving blood every chance I could.  But, like you all – I get busy or some of these excuses start ringing in my head.  I have to be honest though, I do try as much as I can to give blood if I have the chance at a blood drive.  Giving blood doesn’t take long at all and other than having to control my alcohol or exercise that day – it doesn’t impact my life too much.  It’s like voting for me.  I feel good doing it and feel proud walking around with my elbow wrapped up in horrible blue tape for a couple of hours.  It’s like a battle scar that somehow says, “I care”.

Platelets.   For some reason this process is a whole new ball game.  I don’t give them as much as I should.  I’m just lazy about it really.  I’m very particular about my platelet giving.  It is a must to have someone with me to entertain me for 90 minutes.  I find that I try to bring Maitland with me so that we can kill two birds with one stone in the chair and knock out as much work as we can.  We sometimes get our best work done in those chairs.  I also like that she keeps my mind focused.  I can’t focus on Isabella too much in those chairs or the experience may become to painful.

I have had some very memorable platelet donations.  As you know, I find it easy to torture myself without even knowing it.  The first anniversary of her death, I decided to schedule a platelet donation during the hours she died of June 28th.  I figured that if I was going to do this in her honor, let’s really do it.  The center was full that day as we were really pushing for 100 platelet donors that week, which is harder than landing on the moon apparently.  I sat in my chair and watched seas of purple come in and out.  Everyone knew that I was struggling because I sat there trying to have conversation, but knowing that tears that were falling slowly from my eyes as I talked.

I could see the hour of her death approaching and I just wanted to die.  My brother came in during that time and sat with me.  I think he gave blood instead of platelets that morning but all I really remember was him being with me.  He was there with me on the day we found out she had cancer, up until the day she died in our house.  He is a quiet brother at times but his presence is heavy.  We don’t often talk during these times about what is really going on in our head – it’s like an unspoken thing.  He knew how hard it was for me as I sat there and sobbed.  He just sat there – understanding how the things we hate to do, still need to be done.  This is not where I wanted to be on this morning and he knew it.  He knew I wanted to be in my bed, sobbing and not sitting here in this gray chair.  But once again, I was doing something, not for myself, but for her.  It was the longest donation of my life – but the most meaningful.

We left that morning together and drove to pick out an engagement ring for his girlfriend, Laura.  He let me be a part of a huge day in his life, maybe because I let him be a part of mine.  We went to lunch and had a drink and laughed.  By then my tears were dried up and I had focused on the excitement of his day.  He was starting a new chapter and I got to be there for it.  It was a good day in the end.

Each year as this date approaches, I feel myself wanting to retreat.  I have gotten a little smarter and try to no longer go during that hour of her passing.  It’s just not a smart thing for me to do anymore.  But I still go.  I go because I know how important blood and platelets were to her survival.  I go because I remember her bruising from the slightest touch and how platelets repaired her body so easily.  I go because I remember her not being able to walk into the hospital, only to find out that she was in such desperate need of a blood transfusion that I would have to carry her tired body everywhere.  She would run out of the clinic after her transfusion, as if the events of the earlier day never occurred.

I go because every time I’m there and I check in, the staff knows me and knows her.  Someone there always says a kind word to me about her legacy and I know there is no where else I should be.

I go because it’s the right thing to do.  I go for her.

Please help us honor Isabella through your platelet donation with The Community Blood Center of the Carolinas during the entire week of June 21-28…AND at ANY of their locations.  Our goal is a 100 donations.

– DATES: Wednesday, June 21st – Wednesday, June 28th
– GOAL: 100 donations
– PHONE: 1-888-59BLOOD / Can call to schedule at any center
– EMAIL: plateletdonor@cbcc.us

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.

100 platelet donations to celebrate Isabella’s life

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Community Blood Center of the Carolinas, CBCC, has been near and dear to our hearts since Isabella received numerous blood and platelet transfusions to help her stay strong and fight neuroblastoma.  Since Isabella passed just five years ago, CBCC has sponsored our 5K/10K & 1 mile fun run for Kids Cancer every year in honor of her.  And because CBCC helped sustain Isabella’s life while she was fighting, we host our annual Blood Drive every year on Isabella’s birthday (March 9th) and this year we will be hosting a Platelet drive in honor of her passing on June 28th, 2012.  Platelet Drive will take place Wednesday, June 21st – Wednesday, June 28th at ANY CBCC location.  Call 1-888-59BLOOD to make or email plateletdonor@cbcc.us to make your appointment today.  Help us reach our goal of 100 donations!

Many people may not know, but cancer patients are the #1 recipients of blood products.  Sharing Isabella’s story allowed CBCC to show people first-hand the importance of donating blood and hosting blood drives in our community.  Although Isabella lost her life to neuroblastoma, she would have never survived as long as she did without CBCC and the blood products she received.

A note from Martin Grable, CBCC President and CEO…

“Throughout their journey, Isabella Santos’ family has graciously allowed the Community Blood Center of the Carolinas to share her story with our community to highlight the critical importance of blood donation. But they have done so much more than that.

They have become huge supporters of CBCC, attending dozens of our events and hosting blood and platelet drives with us each year. Isabella herself personally worked to spread the word about an ISF and CBCC blood drive held at her elementary school because she so clearly understood the importance of blood donation for patients like her.

Isabella’s family is CBCC’s family, and we truly treasure the relationship we have been able to build over the years. Partnering with such a tremendously dedicated, determined and successful group of people makes what we do at CBCC even more rewarding. Together, we truly are making a difference in the lives of patients and their families in our community.

Those of us at CBCC who had the pleasure of knowing Isabella treasure the memories and miss her dearly. Those of us who were not fortunate enough to meet her remain honored to share her story as we work with ISF and others in our community to maintain a steady blood supply for patients in our local hospitals.”

Please help us honor Isabella through your platelet donation with The Community Blood Center of the Carolinas during the entire week of June 21-28…AND at ANY of their locations.

– DATES: Wednesday, June 21st – Wednesday, June 28th
– GOAL: 100 donations
– PHONE: 1-888-59BLOOD / Can call to schedule at any center
– EMAIL: plateletdonor@cbcc.us