Tuesday, June 29, 2010

Sarah's diagnosis

Before I go into the story about Sarah's diagnosis of cancer, I will give you a little background information about our precious girl.

We traveled to Henan Province in China to adopt Sarah, then 21 months old, in October of last year. She was considered a "special needs" baby because she had been born with a condition called microphthalmia (small, blind eye.) In fact, when we originally got her information, she was listed as actually missing an eye, but as soon as we got her we could see that she did indeed have an eye. It was just small and obviously very underdeveloped. We found it interesting that even though we didn't "choose" Sarah, we just chose which special needs we would be willing to accept, she happened to have one we never even considered she would have, and it is the same rare birth defect my hubby's brother has. Anyway...our adoption story is about as perfect as any could be. First of all, we received our "referral," meaning Sarah's file to consider, on my hubby, Scott's birthday. We actually got to meet her on MY birthday, and the day we had submitted our paperwork saying we wanted to be on the list to accept a special needs child was January 4, 2008. Sarah's birthday! Looking back on all of that, it still gives me chills to think that God was so intentional about the whole thing. He wanted us to be so absolutely sure that this baby girl was meant to be ours. Sarah came to us with no problems, and started smiling right away. She has been a joy since the day we laid eyes on her, with virtually no bonding issues or any other problems other than the typical toddler types of things. But even then she is the easiest toddler I've had so far! She had a normal eye exam in December that showed normal eyesight in her good eye, and in January we started the process of her wearing conformers (hard plastic lenses that got her small eyelid and socket tissues ready for her artificial eye.) All of that went fine, and in May she got her new eye. The problem was I didn't think it looked like it fit right, and as days went by, we and others in the family started thinking something really wasn't right with it. Thinking there might be an infection or some kind of swelling behind there, we took that eye out. Sure enough we started realizing that that tiny eye she had was growing larger. When I called the ophthalmologist about it, they said not to worry about it unless it showed signs of infection. The Friday before Memorial Day, she seemed to be more irritable than usual, and we were definitely knowing that that eye did not look right. The pediatrician sent us to the ophthalmologist on call that day, and he said he had no idea what was going on with it, and ordered a CT scan for her when we got back from the weekend. That Tuesday, June 1, she had that scan and an exam by an ocular oncologist (eye cancer specialist) which both confirmed the bad news--that our precious treasure was a very sick little girl. The doctor seemed very hopeless about the whole thing, and was almost positive the cancer was already in her brain judging by how large the tumor in her small eye was. He told us later that he didn't even sleep that night, he was so upset by how bad it seemed. Here is what I posted on facebook on June 2, as soon as we knew anything:

So, here's what we know so far. Sarah has retinoblastoma in both eyes. This type of cancer is a genetic disease, and she was most likely born with it. In fact, we have found that she did not likely have microphthalmia (congenital small, blind eye), but she was probably born with a normal eye that had this cancer in it once before, and it perforated, leaving the remains of the eye which is what she had when she arrived at the orphanage. We are sure the orphanage and doctors in China had no idea she had cancer at all. Now, fast forward two years, and the cancer is rearing its ugly head again. The tumor is pretty large in that one eye, and there is cancer in the other one as well. There was fear that there could be a third tumor in the brain, but after the MRI this morning, we found there is none there. Praise the Lord! On Friday she will have a spinal tap and bone marrow test to see whether the cancer cells are also in the spinal fluid and bone marrow. Please pray with us that those tests will be negative! At this time they are not planning surgery, but are starting with chemotherapy, probably early next week. We don't know yet how serious they think this could be, but some of the doctors sound pretty worried. Some of them sound optimistic. We know God. We had a rough night of shock and processing all this new information. I spent the night at the hospital praying and thinking. What I concluded is that God knew this would happen. He placed Sarah in our family when she did not have one any more. It was all Him, and we are so thankful. Adopting Sarah and having her as our daughter has been one of the greatest blessings we have ever known, and I am so happy that we are her parents as she faces this dark time in her life. We know that God loves her so much that He wanted her to have a family. And He loves us so much that He allowed us to have her. And if He loves us all so much, then He will work His perfect will in our lives. It is so good to know the Lord, friends. The peace He gives just couldn't come from this world. I hope you know Him too. Please continue to pray for us and our princess. Poor baby just doesn't know what to make of all these doctors and machines and pokes. She doesn't even like to get her temperature taken. She's sleeping a lot, though, so that's helping. We love you and we will keep you updated!

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