On Giving Tuesday, I shared some organizations on my Instagram Stories that have helped us in some way over the past few months. I want to keep a more detailed list here about those organizations and what they have done for us.
ChadTough - This organization funds the DIPG Navigator. They connected us with a Nurse Navigator specifically for DIPG/DMG and they helped us figure out clinical trials and get in touch with providers. They can also help connect patients with second opinions, social workers, and counseling services as needed. It is all free for patients. We haven't needed the Nurse Navigator much, but she still checks in with us about once a month or so just to see how things are going.
The Cure Starts Now - I came across this organization when I was looking for Facebook support groups. They moderate the DIPG/DMG Support Group for Families that has connected me with other parents going through the same thing and been a real source of information. The Cure Starts Now also funds a lot of research into DIPG/DMG. They have a warrior program, but I have not signed up for it yet. We are trying to balance openness about our experience while also protecting our child's privacy, and I'm not sure I want to have people posting about her.
Pediatric Brain Tumor Foundation - We first interacted with PBTF when we went to the Charlotte Knights game for their Starry Night at the Ballpark Event. They raise money for research, and provide support and education for families. They have an Uber Voucher program that is really helpful for families traveling for care.
Make-A-Wish - Make a Wish Central and Western Carolinas planned my daughter's wish trip, paid for all of our expenses (flights, hotel, cruise, excursions, meals), and sent us a pre-paid debit card to use while traveling. We go on the trip at the end of January, but so far, they have been amazing.
Sunning Hill Jill Kids - This is a small local organization that provided my daughter with a new iPad and case that she takes with her to appointments.
UCSF Family House - We stayed here during our week in SF to start the clinical trial. They provide free housing for families, breakfast and dinner during the week, toys, therapy programs, and fun activities for kids. It's is very much a blessing for families to have somewhere to stay while their children are in treatment.
Victory Junction - I just completed my daughter's application for summer camp here. Victory Junction is a free summer camp for children whose medical treatments prevent them from attending regular summer camp. My daughter has wanted to go to sleep away camp for a few years, and I registered her for girl scout camp last summer. Obviously, we had to cancel. Because of her medications, I don't feel comfortable sending her to a regular camp, but this one seems like a great opportunity and they have a week specifically for children with cancer.
Camp Care - This is another free summer camp for children in Charlotte who have cancer. They only offer it one week during the summer, but if it works out with our schedule, I would love for my daughter to be able to go.
Children's Cancer Partners of the Carolinas - Children's Cancer Partners helps families with the cost of getting medical treatment, including gas, hotel, and flight reimbursements up to a certain amount. They offered to reimburse us for gas costs while going to daily radiation appointments over the summer.
Memories and Magical Moments - I have not reached out to this organization yet, but I know families who have. The fund trips for children with DIPG/DMG, and I may want to get in touch with them in the future.
Alex's Lemonade Stand - They have a lot of resources and programs. I specifically signed up for the Sibling Support Program so that my younger daughter has something special to look forward to and so that she can better understand what is going on with her big sister.
A Kid Again Central Carolinas - This is a national organization with a local chapter. They plan outings for families with children who have a life altering or life threatening diagnosis. Our first outing was to Riverbanks Zoo, which was amazing. We haven't been able to go to another outing yet, but they have had events at the Charlotte Hornets and Carowinds recently.
I recently watched a video by the lead researcher at UCSF, Sabine Mueller. It was about what to do when you get a devastating diagnosis of a brain tumor. One of the first pieces of advice was putting together a team to help. This is obviously a medical team, but also family, friends, and community organizations to help with the various aspects of this journey. I know how fortunate my family is to have supportive family, stable and flexible jobs, and monetary resources that we can rely on. I know this would be so much harder without all of that - if I were a single parent, if I didn't have an understanding boss, if I didn't have good health insurance, if I wasn't able to save money, if I didn't know people who could offer financial support or child care. These organizations can help, but I also know they are not enough for a lot of people. I'm not sure what, if anything, there is to do about those inequities, but donate money and support in whatever ways I can.
My Current Musical Catharsis
Soccer Mommy, "Circle the Drain"
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