Live My Dreams Program Helps Support Childhood Cancer Families Traveling for Treatment

Written by Rachel Wood, Director of Marketing

As we saw the ISF Rare & Solid Tumor Program move at lightning speed in 2020 and more and more patients traveling to Charlotte for cancer treatment, it was clear we needed to extend an additional kind of aid than what we traditionally provide.  New in 2021, we are excited to establish the Levine Children’s ‘Live My Dreams’ program to help with specific needs of families being treated under the ISF Rare & Solid Tumor Program.  

When a patient enters Levine Children’s, their family is assigned a Social Worker to help layout their treatment journey and all the associated needs.  Because of your support, we granted Levine Children’s $5,000 to kick off the patient  ‘Live My Dreams’ program giving the Social Workers a little extra funding to offer when family needs associated with treatments arise.  During the first half of the year, this new program helped ease travel strain for 5 rare and solid tumor patients. We look forward to continuing this support.  Updates below on the program impact are provided by Levine Children’s.

10-year old with relapsed neuroblastoma…

A 10-year-old young lady traveled to Charlotte for a follow-up on her DFMO  trial at Levine Children’s.  Unfortunately, while here she learned her neuroblastoma had relapsed.  Knowing the family would now need to stay for several weeks to create a treatment plan, the team offered to move them to the extended-stay hotel (Homewood Suites).  With the support of ISF, the family will not have to pay for lodging.  This has been a huge gift to the family who is self-pay.  The family has also appreciated being able to prepare home-cooked meals.

5-year old with relapsed neuroblastoma

5-year-old boy with relapsed Neuroblastoma who travels from Virginia for Danyelza. Thanks to the generosity of ISF, he and his caregivers (Mom and Grandma) spent 9 days at Homewood Suites by Hilton.  The hotel was a huge gift to the family allowing them to cook their meals in the kitchen located in the suite in which they stayed.  This little cancer fighter particularly loved the pool and asked to be de accessed in between treatments so that he could go swimming.  Allowing him to stay in the hotel with home-cooked meals (and a pool!) allowed him to feel like a kid through this treatment.

4-year old with Wilms Tumor

4-year old Anaplastic Wilms Tumor boy receiving radiation.  Since he needs to be sedated for radiation, our radiology department had him scheduled to arrive at 6am. Given the patient’s age and distance the family lived from the hospital (1 hour and 45 mins), the team felt it would decrease stress for the family to have local lodging. The family was greatly appreciative of the ability to be close to the hospital for his last week of radiation.

8-year old with neuroblastoma

A charming 8-year old boy travels from Virginia to Charlotte for treatment through the DFMO clinical trial.  He was initially diagnosed with neuroblastoma in June 2017 and was first seen here at Levine Children’s in October 2019 and underwent MIBG therapy thanks to ISF’s generous donation. 

10 year old with relapsed neuroblastoma

10-year old neuroblastoma patient on her 2nd relapse and currently receiving Danyelza.  This patient lives 90 minutes from the hospital and since Danyelza is a week-long outpatient treatment, the family was in need of local lodging.

We are thrilled to have the opportunity to support rare childhood cancers in so many different capacities, all because of you!  From building the best program in the country, to break-through research and ongoing family support, we couldn’t make this 360 impact on kids fighting cancer happen without you.

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!