Help Christina During Her Bone Marrow Transplant

My name is Matt. This GoFund Me is about my fiancé Christina and her incredibly difficult year in 2021. It took me a while to figure out how I was going to start this letter. I was taught that honesty is always the best policy and we are very good at being honest. So, I will start with this, for some people one of the hardest things to do in life is ask for help. Christina and I would both fall into this category of people that find it difficult to ask for help. We have been encouraged by the people who have been here before us to, “Just ask, you’re going to need it.” We have been encouraged to let down the wall of stubbornness and pride and simply ask for help. So, we have decided to do just that. So, here it goes.

Our journey started back on June 15th, 2021, when Christina was hospitalized at Jupiter Medical Center in Jupiter, FL. Within 2 hours of being admitted into the emergency room Christina was whisked off to the ICU where the critical care team scrambled to save her life. You see, Christina had suffered terrible side effects form a drug she was prescribed 7 weeks earlier to treat her recently diagnosed Lupus (SLE). She was also found to be sepsis and have several bacterial and fungal infections. The drug, Azathioprine had severely suppressed her bone marrow causing her to become pancytopenia. Pancytopenia means the absence of all blood cells. Virtually all her red blood cells, white blood cells, and platelets where non-existent and we were then introduced to the term Aplastic Anemia. This is where your bone marrow doesn’t make enough blood cells to support life in the body. After10 days in the hospital in Jupiter and numerous transfusions of blood products Jupiter was unable to get Christina stabilized. We were then transferred on June 27th to the University of Miami Hospital in Miami, FL where Christina would remain until August 18th, 2021.

Christina’s initial experience at UM Hospital was pretty much a continuation of her time at Jupiter Medical Center. More antibiotics to combat the numerous infections and more blood and platelet transfusions to basically keep her alive. Soon after her admittance to UM they began her on “Bone Marrow Enhancement Drugs.” These drugs were given in order to try and stimulate, and kick start her bone marrow into producing her own blood cells. For all intents and purposes this worked! Christina began producing her own blood and the blood transfusions became less frequent but still required to keep her stable. Things appeared to be moving in the right direction for us. But, within a day or two Christina started in with extremely high fevers of 103 – 105 degrees. This then entered in a new term we had never heard of before, FUO (Fevers of Unknown Origin). These fevers quickly switched from sporadic fevers to reoccurring nightly fevers. You could set your watch to them. Around 8:00pm-9:00pm she would start feeling the change in her body and Bam! By 10:00pm-11:00pm Christina would be experiencing 103-degree temperature. It then would peak around 2:00am at 105-degree fever. Christina would have to endure these same nightly fevers for the next 4 weeks straight. Christina’s care at this point would consist of a multidisciplinary approach consisting of many teams of doctors from many different backgrounds. These backgrounds were, Infectious Disease, Rheumatology, Pulmonary, Cardiac, and more, as well as Hematology/Oncology. It is the Hematology team that would ultimately provide us with Christina’s diagnosis. However, this diagnosis would not come easy. We would have to hear from the doctors everyday that they are sorry, but they still do not know what is causing Christina’s symptoms and condition. At this point there is no infection present. Her blood counts have begun to normalize. The doctors were looking everywhere to no avail. Final on July 27th, exactly 1 month to the day she was transferred to the University of Miami Hospital they came back with a diagnosis. The diagnosis was Hemophagocytic Lymphohistiocytosis AKA HLH. HLH is a very rare disease predominantly found in pediatrics and infants as a genetic disorder. This syndrome is marked by the inability for the body to regulate the immune response causing the white cells, Macrophages, T-Cells & B-Bells to react in abundance and turn on the body. This De-Regulation of the immune system quickly cause the bodies Natural Keller cells to consume red blood cells and quickly moves over to tissue damage and multiorgan failure followed by death. If left untreated from onset to mortality is 1-2 months. Genetic HLH is referred to as primary. HLH that is Secondary/Acquired happens 1 in 800,000 people per year. While this number of people is suspected to be much high due to the fact most physicians don’t know anything about the disease so it goes undiagnosed. For the doctors that do know, it is becoming more commonly seen but is still very misunderstood. Acquired HLH is associated with a particular “Trigger”. These Triggers are secondary to Infection, Malignancy, Autoimmune disease, or undetermined. For Christina we had 2 of these said trigger with Infection and autoimmune with her Lupus. The thing about the Lupus is that at the time she was first hospitalized her Lupus was under control with all of the therapies to the point the Lupus was not detected. We certainly had a tremendous amount of infection that very well could have over stimulated and triggered the de-regulation of Christina’s immune system and caused the HLH to develop and flare. Having witnessed and now learned so much about this condition I have determined that HLH is by far the most evil and heartbreaking disease I have ever heard of or witnessed in my entire life.

On the day of our diagnosis, they immediately started Christina on treatment for her HLH which consists of chemotherapy (Etoposide), high dose steroids (Dexamethasone), and immune suppressant (Cyclosporine). There is very little known and very little data pertaining to secondary HLH so they use the protocol used in treating primary HLH which consist of the above mentioned regime. On this first day of treatment was the first time Christina went without spiking a fever. This was the first time in nearly 40 days we had any sense of relief. Christina would continue to receive her chemotherapy treatments in the hospital for the next 2 weeks before finally being discharged. Moving over to outpatient care and chemotherapy proved to be a challenge but being the WARRIOR that she is she became acclimated quickly. After 6 weeks of chemo the protocol was stopped. Christina was monitored and unfortunately, she did not receive the full benefits and was unable to put the HLH into remission. This enters in another term we had never heard of “Refractory”. Christina has “Refractory Disease” which means that despite the therapy she has active disease. It was decided to reinitiate the chemotherapy protocol and try again to put her HLH into remission. After another 6 rounds of chemo, we still have active disease, and we were then given the devastating news that we will need to undergo a bone marrow transplant (BMT) in order to truly cure Christina of here disease.

This will now explain why we are setting up this GoFund me page. We have had our first BMT consultation this week where we have received a tremendous amount of information on the process and what to expect as it pertains to the requirements in receiving the transplant. We have decided to have the transplant performed at Moffitt Cancer Center in Tampa, FL. The timeline will look like as follows. First, we identify her donor. We begin the typing process with getting Christina’s sister and 2 daughters typed to see if they would possible be a match for Christina. Christina will be typed as well, and her name will be introduction into the international database of bone marrow donors. If we can not identify a match within the family, it could take 1 to 2 months to find the suitable donor from the database. Once we receive the donor stem cell Christina will be admitted into the hospital to begin the transplant process. For the first 3-5 days she will receive continuous chemotherapy that will completely kill, and wipe clean her existing bone marrow. This is in order to receive the donor stem cell. From the day she receives her new bone morrow she will remain in the hospital for an additional 30 days. From there we will be discharged to continue her recovery through outpatient care. It is mandated by the hospital that we remain within 30 minutes’ drive time from the hospital. For the duration of outpatient care we will be back and froth from the hospital and doctors’ appointments throughout the week, every week. This can take place over the course of 30 – 90 days. The literature states to plan on the whole transplant process to take 100 days from the day she receives her new bone marrow until the time we can come home. In this outpatient setting Christina will require 24/7 care from a live-in caretaker. We are confident and beyond fortunate that we will be able to accomplish this with 1 or 2 key family members. However, we will need to provide the housing for Christina during the outpatient process. Unfortunately, Christina has been on unpaid medical leave from her position as a 2nd grade teacher at Jupiter Elementary and with the Palm Beach County School District. Because of Christina’s employer we have incredible health insurance. However, we are beginning to receive the medical bills for the residual costs not covered by the health insurance. We are so blessed in so many was to be able to have absorb the financial impacts that come with such an overwhelming ordeal. While at the same time forecasting the continuing financial impacts is beyond scary. By us identifying these future obligations is what has influenced us to the point of asking for help. In order to provide the best care possible and in the best environment possible we will need help. If you can find it in your hearts to donate to Christina’s Road to A Cure we would forever be thankful and beyond appreciative of your generosity. I begin by thanking you for taking the consideration in reading this letter and listening to our story. With love and appreciation and from the bottom of our hearts thank you!