Tag Archive for: pediatric cancer foundation

Healing Comes In Many Forms

Isabella’s mom and Dr. Kaplan

It’s understandable that a mom would fall in love with the doctor who is trying to save their child’s life right? For years, Isabella’s mommy put their pediatric oncologist, Dr. Kaplan, on a pedestal. She remembers exactly what he was wearing the day she met him and could barely be in the room without sweating through her shirt due to nerves. They had a budding cancer romance.

 
“Even when the news was bad, it still wasn’t as bad because it was coming from him. I could take it because I knew that he had a plan and he was going to try to save her until the end. He wasn’t going to let her fall through the cracks after all these years of trying to save her together.”
 
Pictured here is Isabella’s mom with Dr. Kaplan at the Levine Children’s Hospital holiday party last night. Through this picture alone you can see that healing comes in so many different forms. For this cancer mom, she can endure conversations with her ‘oncologist boyfriend’ without anxiety attacks and can laugh over the romance she thought once was… and she can reminisce about Isabella.
 
Read more in the below blog article that Isabella’s mom wrote over 2 years ago detailing her cancer romance with Dr. Kaplan…

WHY I LOVED HIM (written by Erin Santos, Sept 4, 2015)

I have loved people in my life for a number of reasons. But this love was different than anything I have ever experienced. This love was built out of trust, admiration and hope for saving my child. You would hope that love should flow both ways and for the first time in my life, it didn’t – and I didn’t care.

October 4, 2007, he came into the room and introduced himself. He was 5’9, brown hair and glasses. He wore khaki pants with a rope belt that secured his pants that didn’t fit properly. A green shirt and tie that looked like the type you bought together in a box. His hand extends, “Hi, I will be your daughter’s oncologist. I’m so sorry about the news you received today.” This is the standard greeting they learned to give us during this time of sorrow.

As her treatment started, we saw him regularly. Every time we would come in, he would be waiting on us. “Hi honey,” he would say to her as he placed her hand on her back. I always got a firm handshake and a smile, very serious business. Isabella slowly let down her guard with him and started to feel comforted by his presence.

The days tuned into weeks that turned into months. But through this journey, I was starting to think he had been in our lives forever. He always knew just what to do and when to do it. I trusted him and more importantly, she trusted him. This was the man that was going to save her.

Isabella began to see him as family. She would spend time drawing pictures for him or do craft projects that she would set aside to bring up to the clinic to leave on his desk. My favorite is the picture she drew of the three of us holding hands, some weird new family we had developed into. She began to feel a level of peace with him and she knew he wouldn’t hurt her, if anything… he would make her feel better. We were a team the three of us and I could tell she adored him.

I began to trust no one or no treatment plan unless he was behind it. New York would pass down instructions of what we were to do. None of it would start until I talked to him and had his blessing. “Do you think this is the right thing to do? What would you do if you were me? How do you think the cancer will react?” I was grasping for his approval and sign-off at every turn. I engulfed myself in learning every piece of her treatment plan and could rattle off blood count numbers or medicine doses without even thinking about it. I yearned for him to know that I was knowledgeable about what was happening because in my mind I told myself that it would somehow give us an edge.

I even changed my appearance in a way that showed that I was “put together”. I’m not one of those moms who sulked around in sweatpants with no make up on. I was in better than those moms. I had my shit together. When he would come on rounds, I found myself being nervous or posing when he was in the room to seem unnerved by him or what he was telling me. I wanted him to trust the decisions that I was making just as much as I trusted his. I wanted him to think that I was more than capable to act when it came to her care than these other moms.

After years of working side by side in her journey, I started to know his footsteps coming down the hall. She and I could feel his presence before he even arrived. And I began to know the look on his face or the tone in his voice that would tell me that we were safe or we were in trouble before the news even hit.

Even when the news was bad, it still wasn’t as bad because it was coming from him. I could take it because I knew that he had a plan and he was going to try to save her until the end. He wasn’t going to let her fall through the cracks after all these years of trying to save her together.

When we reached the point of making the hard decisions, I felt that he and I would come up with a plan on what was best for her. He and I were determining her fate. My husband who left the primary care up to me would often get second hand knowledge of the plan that he and I already determined. It would be positioned in a way that always made him feel that he was a part of the decision. But I know that our decision had been made earlier in the day between the two of us.
I always knew in the back of my head at some point that she was going to die. People would tell me that she is going to be the one to beat it. But, I knew that she wasn’t. It was just a matter of time and options, and our options were running out. I couldn’t imagine what the dying process was going to be like for her. I just knew that we would somehow all figure it out together. He would walk along side our family, holding her hand across this invisible line, making sure that it ended with him just as it began. But, as always in cancer – things never happen the way you want them to.

The call we got from him in June 2012 that revealed the cancer had spread to her bones was the last time I spoke with him before she died. Due to unforeseen family circumstances, he was not available to us the last month of her life. We received no call, no card in the mail. I couldn’t understand him not being a part of this process in the end. This was his child too and she had fallen through the cracks and was dying without him.

The next time I saw him was at her funeral. I saw him out of the corner of my eye shaking my husband’s hand. I wondered what typical doctor response he was giving him that he learned after all these years of losing children.
I waited for him to come over to me. I felt sweat start to form out of every pore on my body. What would he say to me? I wanted to hug him and sob over our failure and have him reassure that we tried everything we could possibly do together to save her.

Instead, he shook my hand. “I’m so sorry for your loss.”

And in that moment I realized. The love I had for this man was one-sided. She wasn’t his child that he was trying to save alongside me. She was his patient. I was her Mother. He is a doctor and this is the business he is in. His handshake was firm, but it told me everything I needed to know. I tell myself that it would be completely unprofessional for him to hug me and cry. All the years of mentoring in his position must of told him to compartmentalize these situations or you will go down in the flames of depression each time you lose a child. But, I swore that she wasn’t just a child to him, she was different.

I couldn’t see him for a couple of years without going into a full-blown anxiety attack. I could feel tears forming and my stomach would be sick when I saw him coming over. It was unfair of me to put him on that pedestal if he were the God that was going to save her. I always craved that conversation that I wanted in the end. But that conversation never came… and I finally began to see him for who he really was…just her doctor.

-Isabella’s mommy

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.

Daddy’s home…

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.

Daddy’s home…

Isabella and Daddy

“With Isabella being my first child… my favorite memories ever are around my “first time” fatherhood experiences.   When Isabella learned to speak.  When she learned to walk. Seeing her guide herself around the living room table, trying to figure out how to put one foot in front of the other were so unbelievably special for me. I was just so excited for her. I’ll never forget the dash to see who could greet me first when I walked in the door. Isabella, Grant and our lab Bailey would immediately stop what they were doing and run to hug me once Erin yelled out, “Daddy’s home”. Isabella would normally muscle out the other two to reach me first. Outside of our children’s birth, those moments in which she welcomed me home will stay with me forever and remain as some of my best moments on this earth.  I will forever hear ‘Daddy’s home” in her little voice in the back of my mind and heart.” – Isabella’s Daddy

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

 

She should of been there…

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 should of been there…

“There are some things I just can’t do. Today is one of them. Her kindergarten class at Marvin Elementary school celebrated the new exciting frontier ahead of them that is Middle School. It’s crazy for me to think that I’m old enough to have a middle schooler. Especially with all the money I pay not to look like I do. I’ve watched them all from a distance over the last couple of years, wondering which group she would of been in. I must say, I even miss the drama that would of ensued with her friends and the talk of boys in my backseat. I skipped through all the heartache, pain and joy of having her in her last year of elementary school. I knew the class was going to be taking a minute during the ceremony today to remember her and both a financial and sentimental dedication would follow. I know the right thing to do would to have been there, and smile when they put her picture up on the screen. But I know in my heart I would have been scanning the room. Wondering if these kids are really touched by the loss still, or if the parents are feeling a little more grateful today when they see their son or daughter’s name being called out. Grateful they are not me. I appreciate her being remembered today but honestly, it’s a day I want to forget. Another milestone, stolen from us because we drew the short straw on life. She should of been there.” Isabella’s Mommy (Today, June 8, 2017)

Today, Isabella should have graduated from 5th grade. The impact she has left on her classmates and everyone around her holds strong… as evidenced today by the dedication her 5th grade class made to her. Yes, Isabella should have been there celebrating with all her friends. But her spirit and legacy is incredibly inspiring… and we thank Marvin Elementary (Union County, NC), her teachers and friends for honoring her to ensure she is never forgotten. Along with the dedication, the 2017 fifth grade class families organized a financial donation presented to ISF. We can’t put into words what this means to not only Isabella’s family…. but her foundation. A plaque remembering her will hang in the hallways among the hand-painted tiles that all of the 5th graders completed as their legacy class gift.

Forever a Marvin Mustang.

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

Why $1,000,000?

WHY THE $1,000,000 GOAL THIS YEAR? We have gotten this question several times. One simple fact… to bring the leading pediatric cancer treatments to local children in our surrounding communities. We have committed to fund the creation of a MIBG room at Levine Children’s Hospital​ and anticipate breaking ground in 2018.

WHAT DOES THIS MEAN? In just one year, our local children will not only benefit from the new MIBG room, but also trials involving MIBG therapy. With your 2017 donations, ISF was able to fund the Frontline MIBG Therapy project trial through the Children’s Oncology Group (COG). This trial hopes to reduce the number of children who relapse and reduce the burden of late effects of therapy. It will be ready for children across the country in August 2018 where an MIBG room is available. Guess who will have an MIBG room? 🙂

WHAT IS MIBG? A cutting edge, targeted therapy used to treat relapsed or high-risk neuroblastoma with little to no pain and side effects. This treatment requires a highly specialized team to deliver the therapy and a special room to assure that patients, family, and health care providers are safe.

WHY IS BUILDING A ROOM SO EXPENSIVE? The room is specifically designed for this type of therapy and is created with lead shielding due to the radioactive nature of the treatment. These lead walls provide the highest level of protection for patients and families. The MIBG room will have an adjoining suite so the patient will always be close to their family.