Initially they told us that the surgery would cause some eye swelling and that it would be normal but I did not expect her whole eye to close shut. It was quite dramatic.
By that evening the swelling was visible in her forehead. By the next morning gravity had pulled it over her right eye but you could still see her eye. By the time I returned that evening it was completely swollen shut. :(
The day after her ommya surgery, she was to have her first chemo administered through it and her 4th different type of chemo. This one was called methotrexate and is more common when it comes to administering for other cancers and auto immune diseases. It is less harsh and has less side effects than the others so it made me feel somewhat at ease but knowing it was being adminstered right through the brain causes a little anxiety. She again did amazing. She first needed to have some spinal fluid drawn so they took about 2 teapsoons of that. It's definitely a strange experience watching them draw fluids out of the top of someones head.
After this fluid was drawn she was to get her chemo using the same needle. Or so we hoped...for the umpteenth time something happened to cause the doctor to have to poke her again, but we are getting used to her multiple attempts when it comes to needles. Either way she was able to do it smoothly and without issue and before we knew it she was done. At this point her eye wasn't completely swollen yet and everything looked good. She made it through one more obstacle and again we wouldn't have to worry about additional spinal taps.
In the 2 days that followed, the swelling has gone down dramatically and she only has one small red spot under the eye. I couldn't believe it went down that much over night but sure enough as fast as it presented itself, it was gone. :D
Today we spoke with the doctors around 10:30 am. They had asked her how she was feeling which was overall pretty good. She got a little light headed yesterday and nurses had to come in and assist but she was back to normal a couple hours later. They didn't seem to concerned and went into more details on her progress.
The first news that we recieved was unexpected and probably the best news I've heard in a long time. The preliminary biopsy results were back from the mystery stuff in between her brain and skull and IT'S NOT CANCEROUS!!! Hallalujuah!!! It wasn't 100 percent but 99.9 and we couldn't be more relieved knowing it was not in or around her brain.
The second thing they said was that she was progressing very well, in fact better than most and the side effects are almost non existent other than a ferocious appetite. The prednisone unfortunately is a double edged sword in that it reduces all the swelling and helps in killing the cancer cells but it increases apptetite, blood sugars and makes you feel jittery and tired at the same time. The benefits outweigh the downsides but it's hard to see her so hungry all the time. With no escape it makes it hard to keep your mind off eating, including ourselves. Her energy levels have been low as well so getting her to move has been a challenge. Her blood sugars are reaching 300 at times but we are hoping it will only be temporary and the doctors have reassured us at her age it most likely will be.
After a day short of 2 weeks we couldn't be more pleased with how far she has come. We did not even have a diagnosis when admited but within this short time, to have her feeling so much better is beyond our expectations and we owe so much to our doctors, loved ones and friends that are carrying our daughter to remission! Thank you again for sharing in our journey and thinking of us at this time. Things could be so much worse for us and yet even during tragedy, we are seeing the positive aspects of it all. We owe all of that to the support and love from you all. And Ian is back so Mayleigh is having a fantastic day!!! YAHOO!!!
Thank you so much from all of us!!!! <3
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