Last July when the doctor gave us the official diagnosis of Epilepsy for Cheyenne, it took my breath away. And earlier this year when they determined that her particular type of Epilepsy has less than a 3% chance of ever being controlled with medication, I thought things couldn't get much worse...but last Friday, it did.
The day we met Faith we noticed she has a subtle head tic. It occurs almost all the time but is even more pronounced when she is stressed. This, in addition to her head circumference measuring in the 97+ percentile (compared to height and weight below the 10th percentile), had the International Adoption Clinic doctor (Dr. Staat) concerned enough to refer us to a neurologist who specializes in Movement and Tic disorders. Knowing the neurologist would want an MRI, Dr. Staat proactively ordered one. The MRI was done on 12/26. We didn't expect to get any information about it until our appointment with the neurologist next week. So imagine my surprise when I answered the phone last Friday morning to hear Dr. Staat's voice on the line.
Dr. Staat knows us well. We started working with her and getting to know her very early on in our adoption journey to Cheyenne in 2016, when Dr. Staat reviewed Chey's Chinese file with us. We worked with Dr. Staat after bringing Cheyenne home. Dr. Staat also spent a good deal of time working with us on the file of the little girl we ultimately had to turn down because of new medical results Dr. Staat uncovered. She reviewed Faith's file and when we brought Faith in for our post-adoption appointment, it felt like reuniting with an old friend when we were with Dr. Staat. I say all this to help you understand that she knows us and we know her well enough to know when something feels "off".
I had that feeling from the moment she started talking and how she seemed so hesitant to say whatever it was she was trying to say. She asked me if I had read the MRI results on MyChart. I explained I had but didn't really understand what it all meant. I knew something was not good because I did read that they wanted to do another scan in 1-3 months, but we went through that with Cheyenne, so it didn't scare me too much. Dr. Staat went on to explain the results to me. She was using big medical terms (like neoplasm) that I didn't understand. Again, I could tell she was choosing her words wisely in an effort not to scare me, which of course was scaring me. When I asked her to just "give it to me straight", she said the words no parent ever wants to hear - CANCER! For a few moments, the whole world came to a screeching halt. Dr. Staat went on to explain that they see something on the scan, at this time they are unsure of what it is. They listed three possibilities, but neoplasm (cancer) was one of the three possibilities. She told me that as soon as she read the results she contacted the on-call neurologist who also read the results and reviewed the scans. Together they determined that while nothing seemed to be emergent, we should change our appointment from the Movement & Tic disorder doc to a different neurologist, specifically the neuro-oncologist. The new doc they want us to see if off until tomorrow. Dr. Staat told me that she would personally call that doc tomorrow to request for her to see us as soon as possible. But for now, all we can do is wait.
I asked Dr. Staat to level with me and give me the best and worst case scenarios, recognizing that she herself is not a neurologist. She told me that best case scenario was that whatever this lesion is they see is nothing. It's a benign infection or something that can clear up on its own and no harm will come. Worst case scenario is that we discover it is cancer and have to treat it in the same way as any other cancer is treated - with chemotherapy. What's worse is, because it is in the brain, the chemo could alter the healthy parts of the brain surrounding it.
Dr. Staat asked me if Faith ever complains of headaches, seems overly tired or vomits. I told her no and in fact, she seems extremely "normal". Dr. Staat agreed those were all good signs and attempted to reassure me that this is just one potential diagnosis and to not panic. And we're trying. Some days we do well, other days (mostly quiet nights), I'm in tears thinking and praying about it.
In the meantime, we are attempting to gain copies of an MRI that she had done in China (2.5 years ago). Our agency says it's a long shot but they're trying.
Not that news like this could ever come at a "good" time, but as timing goes, this is at least a time when we're very distracted with other concerns. Cheyenne goes in at 6:00 Monday morning for her Phase 2 Epilepsy testing. She will be in the hospital until 1/15 and I will be with her pretty much the entire time. This will have me/us worried enough to hopefully not worry too much over something we have little information on.
These days, the thing that gives me the most hope is the reminder, we named her "Faith" for a reason...we need to have Faith Over Fear - now maybe more than ever.
We know God has a plan but many times it's really hard to trust in Him. Please pray for healing for both our girls and pray for strength for us.
The day we met Faith we noticed she has a subtle head tic. It occurs almost all the time but is even more pronounced when she is stressed. This, in addition to her head circumference measuring in the 97+ percentile (compared to height and weight below the 10th percentile), had the International Adoption Clinic doctor (Dr. Staat) concerned enough to refer us to a neurologist who specializes in Movement and Tic disorders. Knowing the neurologist would want an MRI, Dr. Staat proactively ordered one. The MRI was done on 12/26. We didn't expect to get any information about it until our appointment with the neurologist next week. So imagine my surprise when I answered the phone last Friday morning to hear Dr. Staat's voice on the line.
Dr. Staat knows us well. We started working with her and getting to know her very early on in our adoption journey to Cheyenne in 2016, when Dr. Staat reviewed Chey's Chinese file with us. We worked with Dr. Staat after bringing Cheyenne home. Dr. Staat also spent a good deal of time working with us on the file of the little girl we ultimately had to turn down because of new medical results Dr. Staat uncovered. She reviewed Faith's file and when we brought Faith in for our post-adoption appointment, it felt like reuniting with an old friend when we were with Dr. Staat. I say all this to help you understand that she knows us and we know her well enough to know when something feels "off".
I had that feeling from the moment she started talking and how she seemed so hesitant to say whatever it was she was trying to say. She asked me if I had read the MRI results on MyChart. I explained I had but didn't really understand what it all meant. I knew something was not good because I did read that they wanted to do another scan in 1-3 months, but we went through that with Cheyenne, so it didn't scare me too much. Dr. Staat went on to explain the results to me. She was using big medical terms (like neoplasm) that I didn't understand. Again, I could tell she was choosing her words wisely in an effort not to scare me, which of course was scaring me. When I asked her to just "give it to me straight", she said the words no parent ever wants to hear - CANCER! For a few moments, the whole world came to a screeching halt. Dr. Staat went on to explain that they see something on the scan, at this time they are unsure of what it is. They listed three possibilities, but neoplasm (cancer) was one of the three possibilities. She told me that as soon as she read the results she contacted the on-call neurologist who also read the results and reviewed the scans. Together they determined that while nothing seemed to be emergent, we should change our appointment from the Movement & Tic disorder doc to a different neurologist, specifically the neuro-oncologist. The new doc they want us to see if off until tomorrow. Dr. Staat told me that she would personally call that doc tomorrow to request for her to see us as soon as possible. But for now, all we can do is wait.
I asked Dr. Staat to level with me and give me the best and worst case scenarios, recognizing that she herself is not a neurologist. She told me that best case scenario was that whatever this lesion is they see is nothing. It's a benign infection or something that can clear up on its own and no harm will come. Worst case scenario is that we discover it is cancer and have to treat it in the same way as any other cancer is treated - with chemotherapy. What's worse is, because it is in the brain, the chemo could alter the healthy parts of the brain surrounding it.
Dr. Staat asked me if Faith ever complains of headaches, seems overly tired or vomits. I told her no and in fact, she seems extremely "normal". Dr. Staat agreed those were all good signs and attempted to reassure me that this is just one potential diagnosis and to not panic. And we're trying. Some days we do well, other days (mostly quiet nights), I'm in tears thinking and praying about it.
In the meantime, we are attempting to gain copies of an MRI that she had done in China (2.5 years ago). Our agency says it's a long shot but they're trying.
Not that news like this could ever come at a "good" time, but as timing goes, this is at least a time when we're very distracted with other concerns. Cheyenne goes in at 6:00 Monday morning for her Phase 2 Epilepsy testing. She will be in the hospital until 1/15 and I will be with her pretty much the entire time. This will have me/us worried enough to hopefully not worry too much over something we have little information on.
These days, the thing that gives me the most hope is the reminder, we named her "Faith" for a reason...we need to have Faith Over Fear - now maybe more than ever.
We know God has a plan but many times it's really hard to trust in Him. Please pray for healing for both our girls and pray for strength for us.
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