We want to start by saying Thank You for taking the time to even read this journey which is a brief summary. This is not easy for us to put out there, but many people have asked how they can help and suggested that we put our pride aside and do this. We have been reminded that this is for our daughter. Our daughter Nadia has been diagnosed with an extremely rare blood cancer that is affecting her brain. There is a long story leading up to March 18th, 2026 that started back in late summer of 2025. However, on March 18th, Nadia was admitted again to Dartmouth Hitchcock Medical Center (DHMC) for high spinal fluid pressure on her brain which caused frequent and intense headaches and nausea. Sunday, March 22nd, she underwent major brain surgery to place an External Ventricular Drain (EVD) through her right frontal cortex to the center of brain where the fluid is produced. This allowed doctors to collect the fluid for testing while continuing to control the pressure. After surgery she was immediately moved into Neuro Critical Care where she was monitored closely while they continued to work at trying to manage her headaches and nausea. During the operation, the neurosurgeon requested permission to do a brain biopsy as well (thank goodness) because we kept hearing that “nothing about her case was textbook”. On Friday, March 27th the pathology results were in and it was determined that Nadia has ALK positive Histiocytic Neoplasm. DHMC has never seen a case of this cancer and they aren’t sure if Mass General in Boston has either. On April 2nd, Nadia underwent a second major brain surgery to replace the EVD with a permanent internal shunt and to do additional biopsies. Late April 3rd, she was moved from Neuro Critical Care to the Hematology/Oncology floor. Then finally on April 8th, she was discharged to go home with lots of follow up appointments to include going to New York City to a doctor at Memorial Sloan Kettering Hospital (MSK) who has some experience with cancers involving histiocytes.
On Tuesday, April 14th Nadia ended up back in the ER at DHMC due to a fever, but was discharged late afternoon in time to head to NYC for a very early Wednesday morning appointment at MSK. We drove home Wednesday night and got up Thursday morning to go back to DHMC for follow up appointments. Just before noon at the start of an appointment Nadia started having odd symptoms, including slower speech. She was immediately taken to the ER again and tests began. Over the course of several hours, Nadia slowly declined to the point of being unresponsive both physically and verbally. Just after midnight, she was readmitted to the hematology/oncology unit. They ran an EEG for 36 hours which showed no signs of seizure activity. However, due to her condition she is at high risk so she is now on an anti-seizure medication. We are happy to report that she is doing much better. They are not sure if she had a seizure which started this last hospitalization or if it is the cancer, a combination, or what. She is still admitted as we continue to navigate uncharted waters.
The good news is there is hope for treatment! They are working to determine the exact type of mutation that Nadia has to know what targeted treatment therapy they can use through molecular testing. This is a process that is not quick. As you can imagine, costs are rapidly adding up between hotel stays, travel, and medical expenses - a lot of which are still unknown. Nadia also lost her job in early March for missing too many days related to the effects of what we now know is a rare form of cancer.. We also know that the medication(s) will be thousands of dollars a month and we are battling with the insurance company already. Again, thank you for your love, support, and prayers - we need all the prayers we can get.