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ISF Live My Dreams Program Has Supported 39 Patients Since Its Start in 2021

Written by ISF Marketing Team 

As part of the Isabella Santos Foundations mission, we want to ensure that families impacted by a rare pediatric cancer diagnosis are supported during what can be such a stressful and challenging time. In 2021, we established the Levine Children’s ‘Live My Dreams’ program to help with specific needs of families being treated under the ISF Rare & Solid Tumor Program. Because of your continued support, our quarterly grant for the “Live My Dreams’ program has impacted 39 rare and solid tumor patients since its start.

Read a little more about the patients impacted by this giving program: 

• An adorable 3-year-old with neuroblastoma who travels from Armenia for DFMO trial 014. This was his second visit. The family asked for support with an extended stay hotel so that Mom could provide home-cooked meals to her son. The family pays for their own travel so ISF’s support with a hotel helped in offsetting the cost of their flights. 
• A charming and delightful 11-year-old with neuroblastoma who traveled with his parents from the UK to enroll on DFMO 006 trial. They were initially covering their own stay but when Emily Riordan (Levine Children’s Social Worker) met with them and told them about ISF and the grant to support lodging they were blown away. Similar to the first patient, they had paid for their flights so the option to have a week at the extended-stay hotel covered helped to offset some of the cost of their flights. The family was so appreciative.
• A quirky 6-year-old who is newly diagnosed with Wilms Tumor. Levine Children’s will be their primary hospital. The family lives in Nebo, NC (about 2 hours away).  They had scans on a Wednesday and a follow-up appointment the following morning. We were able to book them a hotel close by for the night so that they did not have to drive 8 hours in two days. It seems simple enough but such a huge help for a family navigating this new world where long drives for treatment will be a regular event for them. The ability to cut back on some of that travel has a huge impact.
• A sweet 5-year-old with neuroblastoma who traveled from Singapore to enroll on DFMO clinical trial 015. His parents had already booked the extended-stay hotel for the week when Emily met with them in the clinic to introduce herself. She shared about ISF and asked if they needed help with the hotel stay. Emily shared with me that the parents teared up at the generosity being offered to them. They were so grateful for the support.
• A 35-year-old male with recurrent metastatic neuroblastoma who flew here from Ohio for follow-up for clinical trial 006. So many resources cap at 18 or 21 so being able to utilize the support from ISF to support this patient’s stay was a huge help to him.  
• A sweet 12-year-old girl with osteosarcoma. She underwent surgery to remove the tumor from her leg at the beginning of December. Post-surgery, she needed an additional week of recovery not covered by insurance before returning to her 3rd-floor walk-up apartment. Thanks to the generosity of ISF, we were able to provide this for the family. She and her single mom stayed in a handicap-accessible extended stay hotel room close to the hospital to allow her more time to regain strength. I am happy to report that she is now walking with the use of a walker and is no longer reliant on a wheelchair.
• An adorable 6-year-old with anaplastic Wilms Tumor who lives approximately 90 minutes from the hospital. He was scheduled for early morning scans (arrival 6:30 am). ISF funding assisted in getting them a hotel room the night before so they did not have to leave their house at 5 am the morning of scans. It seems so simple but incredibly helpful as they would likely have needed to be up by 3:30 am to get everyone ready for the day!
• A charming 6-year-old with relapsed neuroblastoma who travels from Virginia for care.The family needed lodging for follow-up appointments post MIBG treatment. 
• A delightful 5-year-old girl with refractory neuroblastoma who traveled from Germany to enroll in clinical trial BCC015. ISF’s funding assisted in covering her etoposide. 

Donations to this program help fund many aspects of family needs outside of cancer. Family needs may include counseling services, dental needs, hearing aids, scholarships, and activities. We continue to support the organizations that meant so much to Isabella and made an impact on her life, including OneBlood, The Ronald McDonald House of Charlotte, and Make-A-Wish Foundation among others.

To be part of ongoing supportive care for families, please consider joining our monthly giving program. $5 a month can make a world of difference for families fighting cancer![/av_textblock]