Tag Archive for: charlotte neuroblastoma foundation

Max – The Mighty Cancer Warrior

Max the mighty cancer warrior

Max is a neuroblastoma warrior. The energetic and active three-year-old has been fighting high-risk Stage IV Neuroblastoma since August.

His diagnosis came as a complete surprise to his parents, Dianna and Roger, who say that Max was the healthiest and wildest kid you’d ever meet. 

Max sometimes complained about knee pain and then his eye started getting puffy. Then one day, his eye looked black and blue and got worse. Then the other eye turned yellow and started to bruise. Knowing something was off, Max’s parents took him to the doctor for blood work.

The results showed cancer, so his pediatrician called Dr. Oesterheld at Levine Children’s Hospital, where Max was admitted immediately. It was there that Max and his parents became part of the LCH family under the great care of Dr. Oesterheld and an amazing team of nurses and other medical professionals to begin a long and rigorous treatment process.

Max’s Treatment

The primary tumor is on Max’s liver, on two lymph nodes on his abdomen, and his eye. He recently had 30 percent of his liver removed, a resection surgery to remove his tumors, and received his sixth round of chemotherapy. He has also had 11-12 blood transfusions and four platelet transfusions since August. 

Max the mighty cancer warrior

Max still has bone cancer on the entire top of his skull, right upper arm, pelvis, spine, and legs. His treatment is being pushed back three to four months, because his cancer isn’t quite ready to move forward with the original treatment plan, which would include a high dose of chemotherapy and stem cells. He may end up needing MIBG Therapy. 

“I would never want anyone else to have to go through this,” said Max’s mom, Dianna. “It’s very scary, but we are very grateful to the amazing team at Levine Children’s Hospital who are like a second family.”

Max is part of DFMO drug study at LCH to help prevent relapse of neuroblastoma. As part of the study, he takes a chemotherapy pill at home. Fortunately, it doesn’t add any additional side effects or toxicity. 

Max bounces back between treatments and enjoys his time at home in Montgomery County where he and his family have a hobby farm. Max’s best friend is his chicken named Pumpkin who is like a dog in the way he plays with him and follows him around.

Pediatric Cancer Funding

Max receiving treatment at Levine Children’s Hospital

It wasn’t until this summer’s shocking news that Dianna realized how much funding is needed in the pediatric cancer field.  Since Max’s diagnosis, his parents have become passionate about raising awareness and funding for pediatric cancer and supporting local hospitals like Levine Children’s because they don’t turn people away. 

Adds Dianna, “These hospitals are like angels doing everything they can do to give all these kids a fighting chance. My new mission is educating people about rare childhood cancer. No baby, three-year-old or teenager deserves to die because there is not enough money to save their lives. I will do whatever I can to make a difference.”

If you are interested in helping support Max during his treatment to assist with medical expenses and gas cards for their two-hour trip from Montgomery County to Levine Children’s Hospital, please email Dianna at dianna.lariviere@gmail.com to her PayPal. 

Max and his pet chicken Pumpkin

Max, Cancer Messed With the Wrong Kid

Max and Santa

Sometimes an 8 year old can just put everything in to perspective

Written by Erin Santos, Isabella’s Mom
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I knew that Jersey Mike’s Subs Day of Giving was going to be good, but today exceeded my expectations. I knew lunch would be crazy so I spent my lunch watching social media flood with everyone I knew getting lunch while I patiently gave platelets at the blood center. Also, because this was about Isabella, I wanted to take the kids for family dinner tonight. We ventured out to a new location for us on East Boulevard. When we walked it, I was so excited to see the team in their Cancer Messed With shirts. They of course greeted us when we walked in, not knowing the story that just walked through the door. The first teammate noticed my shirt (CMW the wrong family) and said, “Hey! Look at us in our matching shirts!”. I told her I loved not only the shirts but everything they were doing today in honor of my daughter. I was Isabella’s Mom. The assembly line stopped and I was created immediately with hugs. Sophia of course proudly announces that she is her sister too. The manager tells me how honored they are to be a part of the process and how he read a great interview that I did in Creative Loafing a few years back. It hooked him and and he has been following us every since. He was happy to be a part of the team that provided dinner for the Levine families earlier this month and proudly showed me the photo on the wall.
 
Sophia and I proceeded to eat together in a booth alone as I listened to her talk about her day, stopping every so often to hug me. Midway through our meal, a man and a woman came over and shook my hand. They just wanted to come over and meet us. Turns out their son Tristan, was diagnosed with neuroblastoma at just 5 months old. He has had 4 rounds of chemotherapy and 2 surgeries already in just 9 months of life. They had always heard of us and were so excited to meet us and thank us for all that we are doing. I told them they were in great hands at Levine Children’s Hospital and NB caught under the age 2 has a very good prognosis. We would love to help them with anything they need but by the look on his face I felt like maybe we were already doing enough. He jokingly said that this sub will taste a whole lot better now after this and loved that it was going to help kids like his. He shook my hand again and looked me hard in the face and said, “Thank you.”.
 
Only a couple kids in Charlotte with NB and we stumble across them randomly tonight. I try not to let these things screw with my mind – the whole coincidence of it all so I turn back to Sophia. She says, “Mommy there is good and bad about Isabella dying. Bad because she can’t sit here with us at this table, but good because we are helping that baby.” I get one last hug and she is back to her food. Sometimes an 8 year old can just put everything in to perspective.
 
-Erin, Isabella’s Mommy

Magical Moments

A very special group of people sent the Santos family on their last Disney trip with Isabella right before she passed away. They knew that her most favorite memories were in Disney… and were determined to give Isabella and her family one last magical moment together. Isabella could barely get out of bed a good bit of the trip, but there were times the magic brought her out of her pain for just a few moments. Here she is watching fireworks right outside her balcony.

“We even decided to take her there just a couple of weeks before she passed away. Make-A-Wish has made this place the one place in the world that brought her the most happiness. We saw the impact that a wish trip had on her mental and physical state, as well as the rest of us. It made miracles happen for us – so many times.”

13-year old Sidney is fighting cancer… and we want to help bring her happiness too! From one magical moment to another, our hearts swell to think that we all could play a part in her WISH to visit the Harry Potter museum in London. We still have $3,000 left to raise to reach the $6,000 fundraising goal by March 31.  DETAILS and DONATE.

LETS BECOME A WISHMAKER TOGETHER IN HONOR OF ISABELLA!

We Did It: MIBG Treatment Room Coming to Charlotte

Friday marked a huge milestone for our Foundation.  And we aren’t just talking about a monetary milestone and funding a million dollar project, but also an emotional one.  On what would have been Isabella’s 13th birthday, it was extremely special to be able to celebrate her life, her legacy and especially the IMPACT she is making on this world with the coming of an MIBG Treatment Suite at Levine Children’s Hospital.

Levine Children’s Hospital will now be 1 of 20 hospitals to have a MIBG Treatment room in the U.S.  The two-room MIBG suite, which will include a lead-lined patient room and an anteroom for parents and caregivers, will provide targeted radiation to pediatric neuroblastoma patients and other rare pediatric cancers with minimal side effects.  In addition, availability of this room will allow for research studies aimed at testing the effectiveness of early MIBG treatment regimens.  Isabella and her parents were forced to travel to Childrens Hospital of Philadelphia due to this treatment not being available in Charlotte.  We are excited that we are changing this challenge for other families.

The MIBG project team did not forget one single detail.  Most MIBG treatment rooms  are just a one-room area for the patient receiving treatment, while their parent or caregiver sits on the other side of a lead-lined shield.  The two-room suite will give the child receiving treatment the ability to see the parent or caregiver through the connecting room window.  We love all the details the project team has included into the treatment suite design like utilizing Isabella’s artwork and a multi-colored fiber optic light design on the ceiling.  And that’s just a start.

We were joined on Friday by our 3 Wish Circle Members and sponsors who helped us make this room a reality.  What was also special, doctors and nurses who treated Isabella during her time at Levine Children’s Hospital were  in attendence.  To watch them listen to Isabella’s mom as she spoke was incredibility touching.  It was definitely a full circle moment.  Everyone in attendance signed a piece of Levine history as the lead beam will become part of the suite during construction.

We can’t thank everyone enough for the support  and believing in our foundation.  You are helping us make a mark on the future and we will continue to strive to elevate cancer care for kids.  We look forward to sharing updates as construction begins in a few short weeks.   The hospital will have construction cameras, it will be fun to watch the room unfold.

News Coverage on the morning:

MIBG WSCOTV News Coverage

Molly Grantham 

 

 

 

Outside Looking In

I haven’t been able to shake the news of TJ Anderson’s passing today. I can never fathom being in TJ or Isabella’s parents’ shoes, heads or hearts and losing a child to cancer. With Isabella, I simply watched from the outside looking in. It changed me forever.

I will never forget watching Isabella’s little body struggle for life with every breath she took during 3F8 antibody treatment at Memorial Sloan Kettering Cancer Center. I will never forget the 2 ER visits in one night due to adverse reactions to treatments that day. I will never forget taking a shift at night in the hospital so that Isabella’s parents could get some rest… and Isabella was up all night puking blood in a bucket while her life was hooked to machines. I will never forget the next morning as she lifted her head off the pillow and her dyed red hair was falling out AGAIN due to the kitchen sink chemo procedure. I will never forget sitting with her during chemo treatments at Levine Children’s Hospital and watching a teenager receiving treatment right across from us… when both Isabella and this teenager should be with friends or at school. I will never forget getting called in the middle of the night to come sit with Isabella’s siblings while her parents rushed her to the hospital. I will never forget Erin’s shaking hands as she begged and pleaded with the doctors to operate after they said there was no more options. I will never forget the doctors lecture on how it was time to think about Isabella’s quality of life. I will never forget kissing Isabella goodbye while she laid un-alert in her parents bed and how ashen she looked.

I will never un-see these moments. I saw too much to not take action and continue fighting. I watched from the outside looking in. It changed me forever.

We talk a lot about taking action… awareness is simply not enough. What are you doing to turn your awareness into ACTION?

– Rachel, ISF Marketing Director

TAKE ACTION:
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Sponsor: dre@isabellasantosfoundation.org