My last post was around 11 months ago. I apologize. We've had a very rough year.
We had a wonderful 2nd birthday in October and an amazing time with our friends for Halloween last year... 2011. We actually left right around Halloween for Emaleigh's 2nd foot surgery.
After Emaleigh's 2nd foot surgery (toe amputations), during one of our routine ultrasounds, the doctors noticed tumors in Emaleigh left kidney. We managed to make it home for a week and then headed back to Cincinnati for an MRI and were told that Emaleigh actually had tumors in both kidneys. We headed home worried about what this meant. Were we talking about the big "C" word or hoped that we just dealing with cysts and strange overgrowth like many of these CLOVES kids have throughout their little bodies.
We made it home and headed back to Cincinnati a few days later for a right kidney biopsy. Emaleigh was amazing, sweet. loving, and kind with all of the poking and prodding while Michael was given very little time with mommy and daddy. We left the hospital unsure if we were dealing with cancer but knew it was a huge concern. We had a wonderful Christmas and thought this really was nothing until December 27th. 
We headed back to Cincinnati to start our first dose of Chemotherapy. She had very early stages of bilateral Wilms tumor and we were devastated about more doctors, more drugs, more pain, a central line, bandages, no baths, no swimming, no hair, nausea, constipation, side effects, and no friends. This is not what a 2 year old should be doing. This was tough, tougher than I could ever explain.
Our first chemo session went off without a hitch. She did not get sick, we had a tough time getting the central (picc) line in but she made it! We headed home to spend some much needed time with Michael. All other weekly chemo visits (minus follow-ups) were done in Virginia at UVA. Our next chemo visit was tough, she had some reactions to the bandage and fought us tooth and nail with every dressing change BUT we became experts in a matter of hours with flushing that line.
The 3rd chemo visit, the day before or so, she started getting sick and then sicker and by the time of our appointment, they admitted her. She wouldn't eat or drink, her eyes were red and swollen and her counts dropped dangerously low (below 100 vs 2500). She was in the hospital for 5 days recovering. Our next appointment we started noticing some major side effects of this drug. She had blisters in her mouth, she was chewing on her fingers, flicking her fingers, she had constipation, and hairloss. The doctor decided to reduce her level to 75% of the drug and we stayed on that dose for the remainder of her therapy with little or no side effects. Another drug was introduced every 3rd week which dropped counts and caused hairloss. Interestly enough, Emaleigh only lost some hair each appointment and did not lose all of it until the final dose.
By mid February, we found that the chemo was working. All of the massed in the right "smaller" kidney were gone. The large mass in the upper section of the left kidney was reduced by 25% but the mass at the bottom of the left kidney did not respond. This was expected since this was the mass that was biopsied.
We had 2 more chemo visits before we were finished and by Mid June we were done. Our last appointment, Chris had them remove her line and within a couple of weeks, we headed back to Cincinnati for our first MRI after finishing Chemo and found she was NED (no evidence of disease). We came back home and tried to have a good summer. The summer flew by but we had a chance to swim in the pool, go to our CLOVES conference and meet other friends like Emmie and learn more about what we're dealing with.
The end of August, we had a chance to head over to the UK and meet our friends Mandy Sellars and twin mom Tina. We also met with Dr. Semple to learn about his overgrowth research. He has been wonderful with responding to questions about Emaleigh.
I can't leave my little man Michael out. He has been doing wonderful and is starting to talk more and more. Emmie's the boss and tries to talk for him, so we've been trying to get him to ask for things. He's coming around. As far as Emmie attention, it's attention in his eyes but not attention that he would ever want. Yeah he's 2 and doesn't understand so we've been working with him to make sure he feels that he has mommy and daddy time too. We're working on it but it's tough.
We're excited for birthday number 3 that is coming up fast and continue to pray that cancer is not in our vocabulary ever again. She has enough challenges without cancer. In January, we're planning on placing them in a preschool, so we're looking around trying to find the perfect place.
