We Are Taught That True Joy Comes Through Suffering

Hello Dear Loved Ones,

Much has happened since our last update. Some good, some not so good. All of it has happened under the loving care and watchful eye of a loving and merciful God. It is not always an easy road, but we strive to trust in His love and care for us each and every day. Many days I fail miserably at this, some days I do pretty well. A dear friend sent a book to me a while ago. I started it, and then life changes started, and it was never finished. God recently nudged me to pick it up again. It is called Hinds' Feet on High Places, by Hannah Hurnard. I cannot believe the parallel right now as I journey with the main character to grow past her short comings, and sufferings so she can live in eternal joy with her beloved shepherd. If you need to see light on your path right now you may want to join me in reading this book.

I will try to update you as best as I can. Thank you for journeying with us. We appreciate all the love, support, and prayers that are showered upon us. This journey has been a humbling experience. It is not easy to always lay our hardships out before all to read. I try to reflect on the fact that my Lord and Savior was crucified before all to witness. It was not a quiet and private affair. So we too will open up our lives to you. Thank you for being a gentle and loving companion.

Both Sarah and Daniel have been to Cincinnati for their routine bone marrow biopsies, brain MRIs, abdominal ultrasounds, and glucose tolerance tests. We have gotten all their test results back in, and are happy to say that everything is stable with them. It is always difficult waiting for these results. We are so grateful that their health is stable, and they can continue their normal day to day lives. God is good, and we praise Him for this rainbow in our lives.

Last week I had a CT scan to see how my cancer was doing. I then met with the doctor to get the results. Our last meeting was so promising that when Anthony was unable to go with me, I didn't bat an eye. Well, I'm sorry to say that these results were less positive, although as always there is a promise of hope mixed in with our thunderstorm. The resident doctor came in first to go over everything with me before my regular doctor came in. We went over my labs first which have greatly improved. As you know my white blood cell count has been extremely high. Nothing has really brought this down. Even IV antibiotics didn't help. Well my wbc count is finally almost normal. This would explain the increase in energy that I have had. Praise God! Next she shared with me that my lung was stable since the last CT scan. This meant that since the decrease in the tumor in my lung from last time nothing new had grown. I was so grateful that my immunotherapy was continuing to do its job. Her demeanor then changed a little bit, and she started telling me about how the CT scan also showed that the cancer has been progressing in my bone. This would unfortunately explain my increase in pain. The cancer has spread across my pelvis and is beginning to enter my left illium. It is also spreading up my spine, is now in my sternum, and the head of my humerus bone. I was crushed. She spoke of stopping my immunotherapy, and starting chemotherapy. This is what I have always been afraid of. I now had to face my biggest fear. I knew I could do it though. I want to be here for my family! I couldn't believe that this was happening. Tears did start to stream down my face, and I assured her that I was not losing hope. She then left the room, and I waited for my regular doctor to come in. Moments later the chaplain came in to introduce himself. He asked me about my journey, and I took this opportunity to unload. I told him about my progression, and what a surprise it was. We discussed my fear of chemo. I shared with him that I want to be able to care for my family, especially Daniel who still requires extra medical care. This led me to discuss the diagnoses of the other people in our family. I shared with him the fact that I have two children with Fanconi Anemia, and what that journey has looked like for us. I then shared with him that I have a husband with an autoimmune disease who continues to give his all to care for us. I shared with him that one of our teenagers has debilitating insomnia, and I allowed the weight of everything that we deal with to press against me. He listened, and it was good to get it all out in the open and as I spoke and cried the weight started to lift. It was shortly after this that my regular doctor came in. She showed me the scans, and we spoke about my treatment options. She talked about adding chemotherapy to my treatments, but by infusions would only be every three weeks still, and that I wouldn't loose my hair. Praise God for small favors because I do think my head is too big to pull off being bald. She then started to wonder if my insurance would continue to cover my immunotherapy because my cancer had progressed while I was on this treatment. I was crushed. All the research that I have read shows that the combination of immunotherapy and chemotherapy is what gives the best chances of an extended life for advanced stage lung cancer patients. I urged her to let the insurance company know that the immunotherapy was working. The tumor in my lung had shrunk, and my wbc count had come down significantly. Only the immunotherapy could be responsible for these positive changes. She said that she would talk to the pharmacist and see what they could do to keep me on the immunotherapy. The pharmacist came in to talk with me a little while later. He shared the side effects of the new chemo therapy medications. He talked about severe nausea and fatigue, a chance of a severe rash, and sores in my mouth and down my throat. He assured me that they would give me medications to try to offset these side effects, and for that I am grateful. I then told him that I wanted to stay on Keytruda, which is the name of my immunotherapy. He explained that this would be a little trickier, but they would take the next couple of weeks to present my case to the insurance company. If they don't approve it, our next hope is that Merck Pharmaceuticals will. They have programs to help patients that need the medication, but can't otherwise afford it. Again the fact that my cancer has shown progression may be a factor. So, we will soon see if the medical team helping me on this journey was able to get it covered, or if we will have to continue to appeal this. My first change in treatment will be on Friday, May 18th. We ask you to join us in prayer as we hope beyond anything that I can continue my immunotherapy, and that my body will handle to chemotherapy well. My hope lays with my God and Savior who has a better understanding of suffering then I ever will. I know He will love me and guide me through these difficult times. I ask that you pray for us that our trust in God may not waiver during this difficult time.

As I said earlier, God has definitely put rainbows in our path. Sarah is one of our greatest teachers of this. She can always see the positive in any situation. A few days ago the little ones and I were driving. They started asking me if we were going to go to Camp Sunshine. This is a camp in Maine that we have been blessed to attend with our FAmily (other families with Fanconi Anemia). They spoil our kids rotten while we learn as much as we can about FA and connect with other families in the process. I shared that we would not be going this year, but hoped to go again soon. Sarah then asked me about the people there that looked at her teeth, and then gave her chocolate. There are two amazing people from Germany who travel to help promote research for treatments for FA individuals with head and neck cancers. I spoke with Sarah about people who try to find a cure for FA. I spoke with her about how wonderful it would be if there were no Fanconi Anemia. Without missing a beat Sarah confidently said, "But Mom, without Fanconi Anemia we would never have found Camp Sunshine, and Camp Sunshine is the best!" My heart skipped a beat and then soared. This little girl who has been through so much, and will be through a lot more in her life understood something better than I did. She knows that life is not about the storm, it is about the rainbows. She knows that through the suffering in life is where we can find our joy. I am grateful for my daughter being my teacher. I will keep this lesson with me through the upcoming storm. My hope is to say , "But without chemo, we never would have..." Let us see what graces God has for us through this next leg of our journey.

I know I am wordy. Thank you for reading, and being part of our journey. So many family and friends have been so generous. You have helped us with love, prayers, watching kids, making meals, and even financial support. You have made our journey easier and helped us feel God's love in very tangible ways. We ask you to continue your prayers, and be assured that we are praying for you! We also continue to ask you to join us in praying for young people who suffer. There are so many in our FAmily who are entering into treatment, or suffering from the effects of bone marrow transplants they've had in the past. There are young people we know who suffer with chronic pain, or cancer. Each child we know going through this handles their journey with such grace and trust. My prayer is that I may do the same. Children are some of the best teachers. Jesus, we trust in You! St. Pope John Paul II, and St. Padre Pio, pray for us! Amen