Tag Archive for: charlotte neuroblastoma

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

Levine Children’s Hospital: We’re Doing All We Can to End Childhood Cancer

Content provided by Levine Children’s Hospital

Today, the 5-year survival rate for those with childhood cancers stands at more than 80 percent – up more than 20 points since the 1970s.

That’s encouraging news for families with children with cancer. But there’s still a long way to go, especially when funding for pediatric cancer remains low.

Here at Levine Children’s Hospital, we’re doing all we can to cure the incurable. We sat down with some of the cancer specialists at LCH to hear what excites them about cancer care here in the greater Charlotte area.

Personalized medicine. As part of the Beat Childhood Cancer initiative, LCH researchers are investigating tailored courses of chemotherapy based on a person’s individual genetic makeup. “We give you a personal answer, telling you what drugs may work for a specific tumor. For people who have gone through chemotherapy, that is a very unique thing,” says Javier Oesterheld, MD, medical director for pediatric hematology, oncology, and blood and marrow transplantation.

New technology for rare nerve cancer. LCH is building a dedicated lead-lined room to deliver a special kind of therapy called MIBG to treat neuroblastoma, a form of high-risk nerve cancer. We’ll be one of fewer than 20 centers in the United States to offer this type of therapy, says Dr. Oesterheld.

Dynamic approaches for blood and marrow transplantation. Replacing broken stem cells with healthy cells from a donor is one way to cure many types of cancer. We’re one of 12 institutions in the country studying a new technology that can help kids with cancer who have no other donors. “We have a number of kids who we’re helping save with this  technology, and we’re really privileged to be able to bring this top-level work here to Charlotte,” says Jeffrey Huo, MD, pediatric blood and marrow transplantation specialist.

Immunotherapies. Many new treatments for leukemia involve helping the body itself to fight off the cancerous cells. “We’re now able to trick the body’s own immune system into recognizing the leukemia cells as bad, so it can go and kill those cells,” says Joel Kaplan, MD, a pediatric hematologist-oncologist. “This type of research is one of the most cutting-edge things going on in the nation right now, and we’re contributing to those efforts here at LCH.”

Beyond new therapies, our doctors know that better treatment also includes providing the extra human touch – to be at our best when children are at their worst. “The science of cancer is always changing, which keeps us on our toes,” says Dr. Oesterheld. “But the idea of being able to get a child through probably the worst times of their lives – for us, that’s invaluable.”

Fighting a Disease

Jackson, 2016 Charlotte Half Marathon

Written by Tammy Lowry, Jackson’s Mom
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At the age of 12, my son Jackson Lowry decided to join the Isabella Santos Foundation Dream Team.  The Dream Team trains together as a group to run a half marathon, supporting each other and raising funds for ISF and pediatric cancer.  November 2016 was his first half marathon, and he did a phenomenal job.  He politely reminds me every day that he beat me, and he is going to beat me again this year.  His motivation might be to beat his mother in a half marathon, but the biggest joy I embrace is how he is learning about fundraising and supporting our community when there are kids a little less fortunate.  But then something happens that reminds me – – he knows what that is like.  He knows how it is to fight a disease.  He has Type 1 Diabetes, and it haunts us when we least expect it.
 XXXX
Last Saturday was a critical part of our half marathon training.  We were meeting for a group run that is 10 miles of the actual race course.  Unfortunately, Jackson had a cross country meet that morning with his middle school – so we both did not attend the group run.   Instead, we got up on Sunday and hit the streets at 7:45am to accomplish this run together.  There is a part of the half marathon course that is a huge hill on Providence Road.  Jackson and I both agreed that once we run that, we are golden.
 XXX
We start off with our run, and he is in high spirits.  He is directing me which route to go, which streets to run on.  He was so pumped.  We pull that hill on Providence Road and when we reached the top he started to slow down.  Now he fell behind me in pace.  We were only at 3 miles – – we had a long ways to go.  I kept looking back at him to see what was going on, and I looped back around.  His blood sugar dropped significantly and he was having a diabetic attack.  I pulled out a bag of energy beans because that is all I had on me at the time.  He ate the entire bag and felt better immediately.  But when you deal with blood sugar highs and lows – it affects your attitude, your mood, and your motivation.  He lost all motivation after his attack.
 XXX
As he looked at me completely wiped out, he told me to go ahead and run.  I was hesitant at first.  I ran ahead of him and I would circle back around to see how he was doing.  Then I finally kept on running but talked to him on the phone as I completed my 10 miles.  He walked it behind me, but he kept going.
 XXX
The entire time I thought – – what is he going to say to me when we meet back at my car?  Will he be defeated?  Will he be upset?  How do I handle this as his mom?  I certainly know that you have good runs and bad runs, but will he understand that?  He is only 13 years old.
 XXX
We get back to the car and he looks at me and says, “I will get it next time.”  Yes you will Jackson, yes you will.  This weekend, we have an 8 mile run, and I know he will do it.  His heart is full of motivation and he won’t quit.
– Tammy Lowry, Jackson’s Mom

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.
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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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