John and I want to thank all of you for your prayers and support over the last few days with so little information about what we are going through. We don't have many answers ourselves, but have felt God moving powerfully this week, giving us hope and courage as many of you have surrounded us in prayer from near and far. We want you to know what we are going through so you can share this burden with us, and so you can be praying along side us as new needs arise.
Before the details, we want you to know couple of things. This is not a "on the way to death" blog- it is a story of God's faithfulness and a deep cry for support. We chose the title of this blog to let you know that we plan to fight (John wanted me to tell you all that he came up with the tagline, not me. Although I do approve). We are living life in full expectation of a miracle. We welcome your comments, but please keep them as positive as possible- we need all the encouragement we can get!
Okay, here's the story- John and I moved from Searcy to Nashville, TN a few months ago so John could take a job at Ezell-Harding Christian School, and I planned to finish my PA training here as well. We found out soon after that we would be expecting a baby (!!!!!!) April 25, 2013. This was AMAZING news for us because we didn't know with the chemo I had in the past if having a baby was going to be possible. But the Lord heard our prayers and gave us a baby WAY sooner than we were expecting. As part of my prenatal care, my OB wanted me to get established at the Vanderbilt survivorship clinic and to see a cardiologist because of some previously reported reduced heart function. I went to the survivorship clinic last week and had a very uneventful visit, which was encouraging.
Monday was the cardiology appointment with a doctor at Baptist where I was planning to deliver in April. Again, a very uneventful but pleasant visit. We spoke about a previous echocardiogram (heart ultrasound) I'd had in 2010 that showed some reduced heart function, and she wanted to have that reevaluated that day to determine if the pregnancy would be considered high risk or not, so I got an echo that day. Afterward they asked me to come back to her office to go over results. She told me that my heart function was indeed reduced, but that wasn't the problem- that there was something on the septum of the left ventricle of my heart, that's the chamber of the heart that pumps blood to the rest of the body. She coordinated with the group I had seen in the survivorship clinic the previous week and scheduled an appointment the next day with an adult oncologist who specializes in sarcoma. To fill you in completely, I have had 4 tumors in the past, all of which were Alveolar Soft Part Sarcoma. It's a very rare solid tumor found in children and adolescents that is generally slow-growing and can recur or metastasize. I have never had metastatic disease, just one tumor at a time. I had chemo the first time we found it because we didn't know what therapies worked best at that point, but we now know that chemo isn't effective against these tumors. So we take them out instead. I've had 4 surgeries, 1 on my tongue and 3 on my chest to remove these occurrences in 1991, 1994, 2005, and 2009. John and I were dating during the last occurrence, and he came to help me recover. What a guy :) So there's the back story.
Tuesday we met with the oncologist who said that there were a few treatment options, but she would have to speak with several different specialists before knowing the best option. One plan included immediate surgery to remove the mass, but this didn't seem a great option to her since it likely has been there for a while. Surgery after the pregnancy is another option, but the previous chest surgeries and location of the mass make that a poor option as well. Another plan is to watch it through pregnancy to see if it starts causing any problems. Right now I am completely asymptomatic, and there may be no need to intervene if it is not posing any immediate harm. The third possibility includes a new medication that interferes with cell signaling pathways to halt tumor growth and potentially reduce tumor size- and it's NOT conventional chemo! We don't know much about this option right now including its effect on the baby. So we're gathering all the information right now in order to determine which plan is best. Or if there's another plan out there. Or if one is best at all. It's all very complicated :)
I have also seen a cardio thoracic surgeon who also indicated that surgery was not a good idea. This is really good news to us- I was certainly not looking forward to having another surgery, especially a heart surgery and especially while I was pregnant and especially while I have a newborn. So this was good news! Praise the Lord!
Friday I had an MRI to rule out other things it could be, the main thing being blood clot. We don't have the full report, but we do know that it is not a blood clot. This means that the mass is live tissue connected to the heart wall. Potentially, it could be benign. In my case that is exponentially unlikely because I have had exactly 4 tumors and each of them have been cancerous. So my assumption from our discussions with the doctors is that we will be treating this as cancer.
Next week I have an appointment with a cardiologist at Vanderbilt (the first one was at Baptist and we are trying to keep everything at one hospital) and will touch base with oncology again at some point as well.
At first this news was completely devastating to us. I had contemplated the possibility that the cancer would come back, but NEVER in these circumstances. How can anyone plan for something like this?? I have a husband and a teeny tiny baby, so much to live for! Before it was just me, no one had sewn their lives to mine, but now there is so much at stake. It felt impossible and tragic, so tragic. Our prayers were lamenting and desperate, sad and hopeless. For a couple of days it was difficult to stop crying at all. Hope was creeping in at times because we KNOW how faithful and big and present God is, but hope was difficult to hold on to. John's big turn around moment came when he had a dream about our family a couple of years in the future- all 3 of us were there and were happy. That gave him the strength he needed to put his fighting face on and leave the sadness behind. For me it came when I realized that the things I had to live for were reasons to be strong, not reasons to be in despair. God did not have to give us this baby, in fact it was against the odds that He did so, and after only 2 months!!! That little baby has given me so much hope, so much promise of a future. I have seen God's healing powers in my life so many times and have attested to his faithfulness through my story forever. That will only continue now.
So now I find myself flooded with hope from the support of our family and friends. Your prayers have encouraged and uplifted us in ways you cannot know. Our situation is impossible- we do not put our hope in doctors or medicine, but in God who works for the good of those who love him, in God who specializes in impossible, in God who is called the Great Physician. The Lord is on our side. He has given us a baby and a hope for a future. Praise be to God.
The greatest thing you can do for us right now is to pray. Pray for a miracle, for healing, for a healthy baby, for my health, for our spirits, for the Holy Spirit to fill us and guide us all the time, for our families, for our friends, for our future. Pray for life.
You can also text or email us. Seriously. It does not bother us one bit, in fact we need it. We need your words of encouragement, we need to read the scripture that encourages you in hard times. We need bits of normalcy as we figure out how to keep living our lives. John needs that and I need that too.
I have some hesitations about lots of people knowing what's going on right now. I think mostly because incorrect information about what has previously happened to me has come back to my attention and been hurtful in the past. There's a delicate balance between beseeching prayer warriors worldwide and avoiding the gossip train. I would love to do the first and avoid the latter. So I ask you to help me with that mission- tell those who will be in prayer and those who need encouragement or to see a miracle, but only tell the story to tell of God's faithfulness and love for his children.
We will try to update at least once per week so you can know what to be praying for and where we are in this journey, so check back for more details, or you can subscribe by email at the bottom of the page. Thank you again for the tremendous outpouring of love and support we have seen from you in the last six days, it has been truly overwhelming and encouraging.
Thank you for joining our fight.