April Update - From Elisa

Hello again dear family, friends, and loved ones! Happy Easter! Alleluia He has risen! We are hopeful for many graces to bless our family during this Easter Season, and that your family is blessed as well. I know it has been a while since we have updated you. Some of it has been me not feeling well, some of it has been waiting for tests and not really having good information to share, and some of it has been needing to take time to journey as a family. So many of you ask how we are doing, and what you can do to help. From the bottom of our hearts, thank you! Hopefully here we can answer your questions, and include you in our journey. As you probably know I was admitted to the hospital the evening of February 13th. The James has an amazing emergency room fast track for cancer patients who come in septic. I did not spend one moment in a waiting room, and had specialized nurses and doctors in charge of my care. I was grateful for this skill level of care since I spent the next 28 hours in the emergency room. It took that long for them to get me a room on the floor. This seemed like an appropriate way to start my Ash Wednesday, and my Lenten Journey. I thanked God for the medical care I was receiving, and did my best to sacrifice the time in the small ER room and bed. I was actually able to sleep during much of this time, and was really only awakened for vitals and meds. They got me on fluids, anti nausea meds, and antibiotics right away. It was known from a previous scan that I had fluid in my right pelvis that was probably causing an infection throughout my body (this was probably a result of the radiation that helped my pain). I was soon able to have the fluid drained, and continued on my meds once they got my upstairs to my own room. I started feeling a little better a few days into my stay and was able to start eating again. I continued to spike daily fevers and my white blood cell (wbc) count would really not go down. So they continued to keep me while we waited for tests. Many doctors were consulted. I saw the regular hospitalists, oncologists, and also hematology, and infectious disease. No one could really figure out why I was on antibiotics and my fevers were still spiking, and my wbc count would not go down. After eleven days it was decided that I was stable enough to go home, and they could continue running tests outpatient. I wasn't 100%, but I was able to keep down food and keep myself hydrated. It really was not until Friday of last week, Good Friday to be exact, that we were able to get some answers as to what is probably happening with my body. The interesting thing is not one test that they ran came back positive. Praise God, since they were testing me for some pretty serious bone marrow disorders. The strange thing was though, that my wbc count still has not come down. More specifically a specific wbc, eosinophils. After all my negative tests hematology was able to tell me that they think the heightened wbc count might just be my body's response to my lung cancer. It is a rare response, but it does happen. She ran a couple more tests that I'm still waiting on, and ordered a bone marrow biopsy just to make sure everything looks good, but she does not anticipate finding anything wrong. I will have my bone marrow biopsy on April 13th, and will then have a first hand experience of what my two youngest children have endured twice a year for the last 5 years. We will let you know how these tests come back when we can. During this time of waiting, which encompassed our entire Lenten journey, I did have another immunotherapy infusion. I was also able to have another CT scan. The scans did show some slight improvement in my lung. My lung nodules seem to have begun to shrink in size. Praise God! My pelvis seems stable, but is so destroyed that I'm still on some pretty good pain meds to manage my pain. I was also told that there is no hope of repairing this damage through surgery. It will just be what improvements I am able to get through immunotherapy, and further radiation if necessary. The fluid that was found in my pelvis has shrunk to about half the size, but is not gone. I also saw the infectious disease doctor on Good Friday, and we decided that I would stay on antibiotics for now. While I don't like the idea of being on antibiotics for so long, I can't imagine the infection in my pelvis sending me back to the hospital if we do not keep it at bay. So, for now I'm doing what the doctor recommends. Our family as a whole has many blessings to be grateful for during this journey, and many struggles that we continue to face. I continue to try to balance nausea and constipation that I believe are mostly due to my medications. Food is very off putting because of this. I am able to eat a very limited scope of foods, and there are many food smells that I'm not able to handle. Many evenings I'm upstairs while my family is eating, and that wears on our family. This is usually a family time that we cherish. It is difficult for me to cook, so we appreciate the meals, and restaurant gift cards that are provided. I see my palliative care doctor next week who manages my pain meds and my bowel regiment. I'm hoping that she can help me with this part of my journey. Anthony is amazing at balancing work, caring for our family in the evening, and his own health issues. His infusions seem to be helping his leg pain in general, but also seem to be “awakening” some nerves that haven't functioned in years. This is a very painful process, and Anthony also needs time in the evening to take care of his own health needs. He needs to be able to put up his legs, and enjoy our family, and then take a bath once the kids are in bed. We are currently looking to hire a part time nanny to help around the house to take some of the daily pressures off of Anthony and myself so we can work on healing our bodies, and enjoying our family. Daniel was finally able to have his routine bone marrow biopsy, brain MRI, and abdominal ultrasound. The scans he had came back clear showing no tumors, or any abnormalities. We are still waiting for the bone marrow biopsy results. Sarah had a cough the weekend before they were scheduled for their procedures, so she was unable to go under anesthesia. She is scheduled to go to Cincinnati in a couple weeks. Hopefully everyone's health holds up. Kyle's insomnia continues to be an issue that affects his sleep, school, and other aspects of life. With these difficulties, he continues to help with Sarah and Daniel as much as possible when I need to rest, or am not feeling well. Ryan had the opportunity to move in with a friend about 30 minutes away. He moved during Holy Week. While he has yet to graduate from high school, he is 18. We miss having him here, but know he has many life lessons that he is anxious to learn. We thank you all for you loving thoughts and prayers. We ask that you continue to keep all of our children in your prayers, especially our teenagers who seem to be more emotionally and spiritually affected by this journey right now. May they continue to trust in the Lord and see that through our suffering, many graces can be given. During Lent we suffer with Christ. While everything is not perfect during this Easter Season, we remember our eternal reward if we live faithfully and carry our cross. It is promised that one day we will rise with Christ where there will be no more suffering, and no more sadness. For now we live in an imperfect world, and try to love and serve as best as we can. As you know we are also part of the Fanconi Anemia Family. We lovingly call these people our FAmily. Many of them are living through their own cancer, or bone marrow failure journeys right now. Some are able to go through treatment, some are not. While some of them are adults, many of these individuals are children, Sarah and Daniel's ages. It is hard enough for me to go through cancer treatment as an adult. I cannot imagine the suffering of children, and the suffering of their parents who have to see them endure so much. Please join us in prayer for our dear FAmily, and these individuals who suffer with such grace. Thank you all so much for your prayers, love, and support! We appreciate all the people who continue to reach out to our family, and help carry us through these difficult times. We keep you in our prayers, as we know you do the same for us. May God truly bless you, and your loved ones! Love, Elisa, Anthony & family