Tag Archive for: charlotte children’s cancer

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.

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.

Her personality would be the anchor…

/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.

Her personality would be the anchor…

Isabella and Don reading the paper

“One of the most precious moments with Isabella took place prior to the cancer diagnosis. It was about a year before that terrible October. As I look back…her personality would be the anchor for her struggles later. Isabella was visiting Katherine and I in Florida while mom and dad went to a wedding and left her with us for a week. Isabella required that she sit each day at the breakfast table and read the newspaper with me and she would not want to leave my lap until I had turned all the pages. Small as she was when Katherine was making dinner, Isabella had to be a part of the process. Isabella was so young, but so engaged with us. It is impossible to imagine then what this wonderful person would be forced to endure. Her inner strength has been the touchstone for our lives since. My big consolation is she is watching over us and filling our lives with love.”  -Isabella’s Grandparents, Don & Katherine Santos

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…

/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.

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.

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.