Ports, bald head and scars…

“This picture that was taken of Isabella always makes me smile. We had just moved back to Charlotte from New York City in the fall after a brain relapse that sent us into a tailspin. The mass on her brain forced emergency surgery, followed by a chemo and radiation regiment that meant moving our whole family for 4 months to the city. If you look closely, you will see the port that was placed just under her skin on top of her head. This port was connected to veins in her central nervous system so a drug called 8H9 could bathe her entire brain and spinal cord with a life saving treatment. (This 8H9 drug developed by Dr. Kim Kramer at Memorial Sloan Kettering Cancer Center has since received national recognition as one of leading new drugs for relapsed neuroblastoma.) In this picture Isabella has yet to receive her first dose of 8H9, but the relapse that once frightened us to our core had 4 months of treatment under its belt and was doing amazingly well. This port would be used in just a couple of months while Isabella was in remission to kill any microscopic cells that may still remain. I was there for a test treatment and was blown away as she calmly sat in her hospital bed while Dr. Kramer inserted a needle into the port and sent fluid through her CNS to ensure the port was working correctly. She looked at me with wide eyes as I sat next to her holding her hand. After 15 minutes of treatment, the needle was removed and she went about playing per usual as if nothing had happened. She would receive 3 of these treatments in the next couple of months but we decided as a family to remove me from the treatment due to possible radiation exposure. My Mom of course stepped in exposed herself, selfless as always. We wanted to have another baby and felt like it was safer for me to be away. I got pregnant that January.
 
That little port never bothered her as you can tell from this smile. As a parent your eye always caught it, but you knew it was imperative to her survival. The port stayed with her the rest of her life. I always wished they had taken it out, but like her bald head and scars… it just became part of who she was. We took her lead and just became happy to have every day with her – who cared about that port? She sure didn’t.” -Isabella’s Mommy
 
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He wasn’t there in the beginning or the end…

Written by Erin Santos, Isabella’s Mommy

It’s been a long 5 years but relationships are growing and changing at Levine Children’s Hospital.  I’ve gone from admiration and love, to fear and anxiety and then back again with these doctors.  The walls and people that once crippled me upon entering after Isabella’s death have become a second home to me.  I know I can joke a lot about how a large donation commitment can buy you a hospital friendship, but it’s become much more than that.  I feel like I have become so much stronger around them.  Just a few years ago, I could barely stand without my knees buckling when I knew Dr. Kaplan was going to be at an ISF event.  Then, this past July – I find myself in the oncology clinic helping give gifts to the kids for our Christmas in July event.  I feel  him coming down the hall before I even see him, just like it used to be –  and my heart still stops for a minute.  We exchange pleasantries and hugs – like you do with an old boyfriend who you run into at a Starbucks years later.  It’s uncomfortable because there was history… but it’s becoming more comfortable because there IS history.  Not sure if I can ever feel totally comfortable around him – but I’m trying really hard.

Luckily, my new contact at Levine isn’t my old boyfriend Dr. Kaplan  🙂  As I sat in the “Green Room” of the NBC Charlotte news studio this week for over an hour with Dr. Javier Osterheld (one of Isabella’s past oncologists), I found myself comfortable and enjoying the company. We were together to talk on air about the MIBG treatment room ISF is funding at Levine’s.  We talked about all things cancer, the hospital, family, beer and other things that might be tad inappropriate.  I found myself laughing and enjoying the company of a man who I wasn’t the biggest fan of several years ago.  Cancer can make you love and hate people all in the same week.  He is easier for me because we don’t have the 5 year history that I had with Kaplan.  He wasn’t there in the beginning or the end.

___ 
We talked about his training with Isabella’s Dream Team and I asked him how many half-marathons he had done in the past.  His answer… “This is my first.  And I’m doing it for you and Isabella.”  Maybe he was bullied into doing it at first, but maybe he’s just really an amazing guy and we lose that vision of these doctors when they give us horrible news about our children.  It brought me back to my ‘Why I loved Him’ blog post  about how you go through these feelings of total admiration for these people because your child’s life is in their hands.  You put this God-like complex on them and they don’t ask for that.  In the end, they really are just normal people who like you have jobs they love and are just trying to save the life of kids.  But they are also people who drink beer, and make fun of themselves and laugh and cuss… just like you.
 ___ 
I find that through Isabella’s death, new things come to life, like friendships with people you once hated that were really only trying to save her.  I can see them all more clearly now – and they are all amazing people.

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Awareness… What a Bullsh*t Word

Originally published on HuffPost, written by Erin Santos

(Written and published 4 years ago, this article is the perfect reminder of why we refer to September as Childhood Cancer ACTION month)

a·ware·ness
noun

1. knowledge or perception of a situation or fact.
“we need to raise public awareness of the issue”
2. synonyms: consciousness, recognition, realization

September is Childhood Cancer Awareness Month, and as I sat eating dinner with my family the other night, I told my husband, Stuart, that I should write something for this month of awareness. I blurted out, “Awareness. What a bullsh*t word. That word is the problem.” And just like that, this blog post was born.

I’m sure the word “awareness” comes from back in the day, when no one spoke of cancer. The “C” word, as it was called. People died quietly. Very rarely was a child with cancer even seen. Probably because there were no real treatments for them, so they died so quickly. Even 20 years ago, they were barely saving one child who was diagnosed with neuroblastoma, we were told at our consultation with Memorial Sloan Kettering Cancer Center. Hell, we were told that our daughter, Isabella, wouldn’t have survived her brain relapse if it had occurred just three years earlier. Isabella would have been dead 9 months after her initial diagnosis. There wouldn’t even have been enough time for me to get her story out to you. So, awareness month was a good thing back then… hey, meet this little 3-year-old with cancer… Nope, wait.. She’s already gone.

But now, times are changing. These kids are fighting harder and longer. Their stories are getting out there because the chemo drugs are not curing kids, but they are extending their lives. People ARE aware of them. Awareness of pediatric cancer is out there. But now we are getting stalled because the movement is not moving.

Here is what a typical pediatric cancer month looks like: You “like” a couple of Facebook posts about childhood cancer or maybe even “share” one. You think about signing up for a childhood cancer 5k, but your life is busy, so you don’t get around to it. You take your kids to soccer practice and do homework and have drinks with girlfriends and go to work and church and read People magazine to catch up on your favorite celebrities and see how short Lindsay Lohan’s shorts were in NYC the other day… “Oh, no she didn’t,” you say. And then, you are running errands in late September and start noticing the city turning pink and think, I need to schedule that mammogram.

Then it is October 1.

Did you know that the 2012 cost of government elections was more than 6.2 billion dollars? Did you know that in 2012, the cost to RE-ELECT the SAME president was estimated to be 2.6 billion dollars? That is something you should be aware of. Because in 2012, we spent less that 10 percent of that 2 billion dollars funding childhood cancer research, or less that 5 percentof the 6 billion-dollar-cost of 2012 government elections. And just 4 percent of the total cancer funding goes to pediatric cancer. Also scary to think about, 60 percent of all funding for drug development for adult cancers comes from pharmaceutical companies. What is the percentage of funding for drug development from pharmaceutical companies for childhood cancer research? Almost zero. Why? Because children’s cancer drugs aren’t profitable. Ouch.

There is some awareness for ya!

2013-09-04-Isabella_Santos.jpgSo, back to my issue with this “awareness” word. The movement I want to start is this… Let’s maybe change what your September looks like. Print a picture of my daughter. Tape it to the back of the doors in your house. That’s right, the front door and the back door. Every time you walk out the door, take a look at her.

She died in my bed on a Thursday morning around 9:30 while her little brother was at camp at the YMCA. She was 7 years old. She died about 80 years early. She also died because she ran out of treatment options. She died because her cancer has very little funding and her drugs aren’t profitable.

Look at her picture when you walk out the door for your awareness. “Awareness.” Check. But then, when you get in your car to take the kids to school, go to work, go to the gym… think about something you can do that is ACTION. Forget awareness. September is Childhood Cancer “ACTION” Month. Do something that day that is action to save a child’s life. Sign up for race, make a donation, research what is really going on, ask your friends to help, talk about it, have a lemonade stand, write your congressmen, help a family who has a child with cancer. Can’t think of something to do for 30 days? Email me, I’ll help you with your list.

Cancer is an epidemic in this country and I’m confused as to why people aren’t freaking out more than they are. Probably because they don’t have it… yet. Or maybe because we are all so “aware” of cancer, but aren’t taking action against it. Maybe we are all waiting for the future of cancer. In the new Matt Damon movie, Elysium, set in an imagined future, a quick scan on your body just “SNAP,” gets rid of it. The truth is, that is not even a remote possibility in your lifetime.

Every day I’m aware. I’m aware that she’s no longer with me. I’m aware that my 3-year-old daughter, Sophia, is inside coloring a picture for her right now. I’m aware that Isabella should be in the third grade this year. I’m aware that my husband lives in fear that he will never be able to love his children as much as he loved her. I’m aware that my 6-year-old, Grant, has nightmares about her. I’m aware that every day for the rest of my life I’m going to feel like there is something missing. I’m aware of a lot. So, the word “awareness” works really well for me in my life. Describe my life in one word, actually, and it’s probably “awareness.”

So, let’s not make this month about just liking a Facebook e-card about cancer or reading a family’s caringbridge entry and then walking away. Let’s all admit that awareness is just a legacy, bullsh*t word and lets all commit to making this month about action. Action saves lives, awareness does not.

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Her legacy…

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 legacy…

Santos Family

“I look at what she has accomplished in the last 5 years since I last saw her and it makes me so proud.  It makes me think that we really must have done something right.  All these years that we beat ourselves up on where we made a mistake or wrong turn that ultimately ended her life.  But, maybe all those decisions were the right ones because they brought us to this place we are now, to a place where her legacy is outliving her actual life.  It brings me to a place where somehow her death is making the world a better place for someone else.

This thought is something that helps me sleep at night because I know this is only the beginning.  All of those pieces of her may be slipping through my fingers in my own life, but it’s building something bigger than me.  She experienced all that pain, so that this wonderful thing could happen.  And maybe now I have to experience all the pain to keep allowing it to grow.  It’s the least I could do for her and I should feel honored to do it.

Not a day goes by where I don’t miss her.  I still can’t honestly say I wish this never happened to us even seeing all the good it has done.  But maybe that day is coming where I will understand it… I’m getting there.  I just wish she were here to witness it all alongside me.”  Isabella’s Mommy

While Isabella didn’t win her fight against neuroblastoma, you can honor her and help families and kids in the fight against theirs. For our 10 year anniversary and with a goal of $1,000,000 we are looking for 100 people to become part of ISF as a Sustaining Monthly Donor.

BECOME A SUSTAINING MONTHLY DONOR

MAKE A SINGLE DONATION

And we both knew it was over…

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.

And we both knew it was over…

Isabella, 2005-2012

“Moments go by and I forget that it has happened. I think that she is just out with someone. It all happened so quickly but the hours felt like an eternity. Tuesday night I got her up out of bed and put her in a warm bath with me. I knew the water would feel good to her and cleaning her would help her sleep. As she laid on top of me we tried to talk about things but when she would speak, the words didn’t make much sense and she was having trouble getting words out. I think that for the first time it made her nervous. She could hear herself and she knew it wasn’t right. Stuart helped her out of the bath and she was too weak to use the restroom or have her teeth brushed. We were supporting her completely. She curled up in bed and tried to watch “cats and dogs” with daddy but she was so exhausted.

I was still giving her oral meds and pills every couple of hours so we were controlling pain, vomiting and anxiety pretty well. I remember giving her meds at 4 am that she took but when I woke at 6am, she could no longer take the meds. Stuart and I knew that morning that we had turned another corner and I started pushing all meds through her port from then on. When hospice arrived that morning, they confirmed that we had hours. Just the day before we were given a couple of days up to a week, and like that – we lost time.

We began to allow people to stop in for a few minutes each and give her kisses and goodbyes. Each one was harder and harder. I just sat there and held her hand as the hours progressed. Her heartbeat was still going strong but her breathing had changed. The time between breaths was getting longer and longer as the day continued. I was able to curl up with her at moments through the day and we would nap together. It felt normal as I curled around her body and allowed myself to relax. We just laid together all day. Each time I had to get out of bed to get her iv meds together, I was scared. I knew that every moment was crucial. I remember falling asleep from midnight to 1:30 in the morning. As soon as I woke, I started to cry because I was so pissed with myself for missing that 90 minutes. She looked so different in just 90 minutes. Family took shifts with me as I tried to stay awake as best I could. Stuart caught a cat nap while my mom and I laid on each side of her. My brother sat in the chair next to us as we talked about anything to keep us awake. I would talk but watch her stomach rise. My conversation would come to a halt at times because I was waiting for a breath. I kept putting my hand over her heart to feel the pounding of it to keep me sane. By this time, her eyes were no longer closing. It made it hard to sit in front of her because they were no longer her eyes. I knew that she was gone but her body was trying to live. It was ripping my heart out that my daughter’s once beautiful face had become so painful to look at.

I was able to sleep from 6-7:30 in the morning while stuart and my sister kept watch. I knew when I woke and looked at her that it was it was time to close off our bedroom to family and have Stuart and I lay next to her. Her body temperature was dropping and her color was changing. I kept rubbing her hands, thinking that if my hands rubbed them enough, they would turn pink again… But they never did. I wish I could of sat behind her and just held her but I couldn’t. I had to sit facing her. I wanted her to know that I wasn’t afraid. I was going to experience every minute of this moment with her no matter how hard it was.

I think Stuart thought she would go in a couple of hours. But I knew by looking at her that it was time. Her breaths became scary.. Each one made me think it was her last. I could see the end of her line resting on the skin above her heart so I just watched it move so slightly up and down to assure me a part of her was still here. Stuart told me that I’m putting too much pressure on myself by not looking away. But I couldn’t. Her face changed. I don’t know how to describe it but it did. I knew that the next breath would be her last.. And it was. I sat there in silence.. Just holding her hand. I pushed away the end of her port and placed my hand on her chest. There was nothing. 9:50am. So many times in her life my hand was feeling her heartbeat and it wasn’t there. I just said, “Stuart.”. And we both knew it was over. I kissed her sweet face, her sweet hands and tears of pain were falling from our eyes.. Feeling like knives cutting our faces. We locked our door and knew that we owed Isabella the privacy she deserved as we got her together. I took off her port, her patches and her bandaids, freeing her from it all. Stuart carried her to the bathroom and laid her against him in the bathtub as I washed her body. We laid her down and dressed her in her favorite silk pony pjs and carried her back to our bed. We spread out her favorite blanket and put her head on her silky pillow as we wrapped her up nice and warm. I kept trying to close her eyes because I felt like it would scare Grant but they still wouldn’t close. Her color was changing quickly so I had to put some pink on her lips and cheeks just so grant wouldn’t notice her coloring. We brushed her hair and folded her hands on her chest. We let our family come in one by one and see her as we sat back, knowing we had truly done all at we could do.

My mom picked up grant from camp and brought him home. We took him in to see her and he sat on my lap next to her and cried. He had lots of questions like how we knew she was dead, if she was just going to stay in our bed with us now that she wasn’t alive. So many innocent questions. Questions you never want to give the answers to. Sophia came in and crawled right up in bed with her. “Bye Belle” she said as she gave her a kiss and a hug and then off she went. The funeral home came quickly which was best. Of course the A/C unit on the second floor of our house went out over the last 24 hours of Isabella’s life so by this time in the process, our bedroom was 78 degrees and climbing. Someone told me that they were here to get her and I just kept thinking, please don’t be creepy looking. Please don’t have bad teeth or some cheap suit on with a stain on it. Why was I thinking this? Stuart carried her downstairs and I swore I wouldn’t watch as they took her. But there I was, following behind in my pajamas watching every move. They placed her on a gurney and I kissed her head and told her I loved her. I had to turn away as they put her blanket over her face. I saw the bag underneath and I knew they were going to zip it over her. I had to turn away. When I looked back, she was in the back of a minivan driving away and I wanted to scream. I knew the cremation would be in 24 hours and I couldn’t handle knowing that she was going to be somewhere without me next to her in a building with strangers. But what could I do? Or that in 24 hours it will be like her body never existed.

I wish I could tell you what happened the rest of the day but I can’t. And I’m sure you are all wondering why I am sharing such intimate details. It is because I am still blown away that it happened. You know children die from cancer. But to see it is unlike anything you have ever imagined. All the notes of “thinking of you, praying for you..” or my least favorite, “RIP Isabella”.. they all seemed like things I would have said to someone but they feel so weird to hear because the don’t feel equal to the situation If everyone had to witness what Stuart and I witnessed, there would be a cure for cancer. Instead of those comments, it feels better to hear, “I ran around my house screaming and punching walls today..”, or “I thought of Isabella and gave blood today or decided to volunteer”, or “I hit up my wealthy great uncle and he gave a million dollars to neuroblastoma research.”. Those feel more appropriate after what I saw. Because however you picture a child’s life ending can’t compare to what it is really like. I’m haunted by the images of her in my mind. I can’t walk in my bedroom, in my bathroom, I can’t close my eyes without seeing her eyes. I know in time the good memories will replace these but I don’t know when that will start. How can we live in a society that allows this to happen? People are living lives and not looking behind this curtain because if they saw what I saw, they would do everything they could to prevent it from happening. People say God needed another angel. If God can make giraffes and waffles and walmarts, then why doesn’t he just MAKE another angel? Don’t take mine. I know I’m in these stages of grief.. Denial, anger, frustration, sadness. I experience a new stage every hour. We had to bolt out of town for a couple of days because I’m literally tripping over her everywhere I go. Her flip flops, her placemats, her toothbrush, her book bag.. It’s punching me in the face at every turn. I need to clear a daily path when I get home so that I can at least function.”  -Isabella’s Mommy, June 28, 2012

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

Where she found the strength, I’ll never know…

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.

Where she found the strength, I’ll never know…

Isabella and Daddy

“Unfortunately, Isabella is no longer getting out of bed.  As a matter of fact, she is barely moving.. or barely awake.  I know that CB could never give you a crisp enough picture of what is exactly going on here and I should do better at that.  So many of you have followed her in this journey for so long and I know you are wanting to know how she is doing.  Our nurse visit today told us that we are just a couple days away from her passing.  Her heartbeat is slowing down but sounding different because her heart is working harder.  Her oxygen is slowing down a bit too.  Her breathing is slowing down so much in fact that I just stare at her.  She will take a breath and then it will be so long until the next one that I find myself holding my breath until she takes one again.  She sleeps most of the day and gives me small glimpses until what is in her mind.  I lay with her so quiet and still and listen to the things that she says in her sleep.  She asks me if I see things or tells someone to wait on Mommy.  She will say Grant’s name but then it wakes her and she says that she was just dreaming.  She flinches and smiles, makes gestures with her hands and squeezes my hand softly.  It’s like she is talking to someone.  But the occasional smile let’s me know that it is not conversation that scares her or makes her sad.  Each night Stuart and I snuggle in beside her and tell her things just in case she is not with us when we wake up.  We have been told by hospice that we are lucky.  She is relaxed, comfortable and not in pain.  So many children pass in pain or discomfort or even worse.. scared.  She seems to be at some peace.  Grant misses her already.  He comes in bed and wants to crawl in next to her.  The other day he just snuggled beside her and scratched her back while they (he) watched a movie.  She didn’t moan or cry out for him to leave.  She just laid there with him quietly.. as if to give him a moment.  Sophia walks around dressed in princess outfits and opens the door occasionally to say, “Bella!” but then is quickly shooed out so Ib isn’t disturbed.  Behind the scenes we are making arrangements so that we are as prepared as we can be.  We are once again overwhelmed by the things showing up at our door.  Fruit, flowers, meals, cards, items for the kids.. amazing stuff really.  I’m picturing the mounds of thank you cards that I want to write when this is all done but I’m also scared to write them because it will mean she is no longer with us.  It is becoming a beautiful thing that I’m watching honestly.  You think you love your kids, but this is like no love I ever knew.  I feel so privileged to be hand in hand with her during this last time in her life.  She is finally allowing other people to have quiet moments with her as well.  It’s as if she is giving them some last gift to say thank you to them as well.  Even my Mom who she adores was moaned and groaned at for some time.. but she is curled up in bed with her now receiving her gift from Isabella for all she gave up in her life.  I’m so thankful that everyone who is important, gets to be a part of this in the end.

Sunday was Stuart’s birthday.  Isabella found the strength inside her to come down and sing to him.  Where she found the strength, I’ll never know.  She gave him an entry to the NYC marathon this November 4th that will run right down 1st Avenue by Sloan-Kettering and the Ronald McDonald House of NYC.  Stuart will be running on behalf of Fred’s Team which raises money for MSKCC’s Neuroblastoma research program.  Stuart has lots of motivation for this run and he will amaze us all.  She will be there in spirit cheering him on… and even in her passing, she is still trying to make a difference in the kids that will come behind her.”  -Isabella’s Mommy, June 26, 2012
We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.
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