My sweet mama has a complex history of autoimmune diseases and pure red cell aplasia that progressed into aplastic anemia in 2020, and a history of low-grade NHL most consistent with marginal zone lymphoma. She underwent an allogeneic hematopoietic stem cell transplant on 1/26/2021, from an unrelated 10/10 matched donor found through BeTheMatch.org. Her post-transplant course was complicated by Gemella H. bacteremia and sepsis, then, aspergillus pneumonia which resulted in subsequent progression/transfer to the ICU and intubation for several days. She was weaned off the ventilatory machine but was found to be very confused. Multiple brain imaging was negative including MRI. A lumbar puncture was done and showed HHV-6 in her cerebral spinal fluid and was also found to be present in her blood. She underwent treatment with GCV and was discharged home on 3/12/2021.

Over the last two years since her discharge, she has struggled with numerous complications from her stem cell transplant including graft vs host disease, immunosuppression which has caused numerous infections that have resulted in hospitalizations for septic shock, short and long term memory loss, decreased cognitive function and processing, loss of balance and coordination which has resulted in multiple falls, and decreased appetite with significant weight loss.

This past Tuesday after going in for our weekly City of Hope visit, she was admitted for what her oncologist was hoping would be a quick little tune up. Unfortunately, her hospital course has been complicated by abnormal findings on her MRI which showed acute left posterior stroke with no observable neurological deficits and interstitial cerebral edema concerning for normal pressure Hydrocephalus. Neurosurgery consulted regarding the normal pressure hydrocephalus that was found on her MRI. Initially, they were hesitant about any immediate intervention fearing that putting her under anesthesia for a shunt placement could result in her having a bigger stroke. The etiology of her stroke still remains unknown which has made mitigating the risk factors for another stroke difficult. The original plan was to complete the stroke workup and follow up outpatient once she was stable enough to be off any anti-coagulation for several days before attempting a trial of CSF diversion through lumbar drain placement to see if there was improvement in her balance/mentation.

After this consult, they started to notice abnormal changes in her blood levels which her hematologist believes could related to a condition called DIC (disseminated intravascular coagulation). DIC can be caused by a severe immune reaction, infection, cancer, or major damage to organs or tissues. Their main focus on the cause has been some type of infection and thus far, there are no obvious signs of infection (which is good news) but her platelets have continued to drop at a pretty significant rate. After running any and every lab test they can with no telling results of what could potentially be causing this, Hematology thinks the next best step is a lumbar puncture to test her cerebral spinal fluid for any signs of infection. Since neurosurgery is on board, they will be removing additional CSF to see if there is any improvement in her mentation. They also will be doing a repeat MRI prior to the lumbar puncture and a PET scan looking for any new signs of infection.

Due to the frequent lab draws, IV medications, and blood transfusions that she’s receiving, they attempted to place a PICC line which was unsuccessful so they are planning to place a port-a-cath tomorrow. She is very, veryyy excited about this because with the port in place, she won’t need to be poked 128621 times throughout the day.

Overall, she is very tired but remains in good spirits. She continues to brighten everyone’s day with her smile and how kind and pleasantly confused she is.

My family and I have had an outpouring of friends, loved ones, and people we have never even met reaching out to see if there's a GoFundMe or anything set up that they're able to donate to to help out and up until now it hasn't been something we've ever really thought about or considered.

After a long discussion with the doctors yesterday about what the road ahead is going to look like for my mama in terms of her prognosis and recovery, we decided to start working on creating an account that will help support a surplus of medical bills, any medical equipment that is needed at home, in home PT/OT, hotels that are near by the hospital to decrease commuting times during her hospitalization, and any additional resources needed in order to ensure she’s able to make the best recovery possible.

100% of any funds that are not used will be donated to an organization that is very near and dear to our hearts, BeTheMatch.org. Be the match is operated by the National Marrow Donor Program and is a nonprofit organization that manages the most diverse marrow registry in the world. Every 3-4 minutes, someone in the U.S. is diagnosed with a blood cancer like leukemia or lymphoma. Be The Match connects patients with a matching donor for a life-saving blood stem cell transplant.

This organization worked so hard to find my mama a transplant donor so it was important to us to make sure that whatever is donated makes a difference and can help give a family extra time with their loved one, just like we've been given with my sweet mama. Thank you, thank you, thank you from the our bottom of our hearts for all the love, prayers, and continued support during this journey. There are never enough words that could even begin to adequately describe how much all of the love and encouragement has meant to us