Case #1: Pt is a 13yr diagnosed with Rosai-Dorfman disease in 2017 after presenting with fevers, bone pain, and inability to walk. Pt began chemotherapy regimens in 2018. We are saddened to share that progressive disease was shown in 2019. Due to the finding, the patient has had to continue their oral chemotherapy, numerous visits to their oncologist, undergo multiple scans and adjust to the symptoms associated with the oral chemotherapy. This includes hearing loss and vision problems. Additionally, patient frequently misses school due to the symptoms.
Pt’s mother is the primary caregiver for not the patient but also for patient’s father. Due to all of these circumstances, mother is unable to work and has to adjust to living off SSI support for both patient and father. When the family abruptly lost their vehicle (due to major repairs and inability to make payments), it added an additional stressor upon family and now they are trying to save as much money as possible to get a used vehicle (around the $10,000-$13,000 range). Due to patient’s condition, it is imperative for the family to have a working vehicle for any unforeseen emergencies. We are hoping that the committee may be able to assist the family with this dire need. We sincerely appreciate all that this committee does for our patients and families. Thank you for your time and consideration regarding this request.
Total ask: $10,000 towards the purchase of a vehicle
The committee had a prolonged discussion about our ability to support future requests for the purchase of automobiles. Concern was expressed that we would deplete our account fairly quickly if request such as this continued in the future. It was decided that we would support auto purchase requests at no more than $5000, only 3 times per year.
Case #2: This case involves a 10-month-old patient with Cystic Fibrosis whose admission has been extended due to not responding to usual medication treatment. This family has received assistance prior from this committee due to a natural disaster however due to this extended admission, the dad (sole provider) has been out of work and mom is caregiver to patient and sibling who also has Cystic Fibrosis. Family is activing trying to find resources to help them while the patient remains hospitalized but they are falling behind on bills. The parents do not have any local family to help assist with resources/finances. We are requesting assistance for one month’s family bills.
Total ask: $1,553.43
The above request was approved. It was noted that we had previously supported a request for this family. Discussion followed regarding putting limits on how many times we will support one family. No decision was made-this will require further discussion.
