12.11.15

Last week, after speaking at length with the neuro-oncologist and neurologist, we decided to make some adjustments to Leah’s medications. We discontinued the antibiotics, because after nine days there was no change in the pain behind Leah’s eye. We believe the eye pain is not due to congestion, but likely a result of the Trigeminal Neuralgia. Once Leah stopped taking the antibiotics, her stomach-aches subsided. Saturday evening, we added a new medication that may help the pain behind her eye, but it can take several weeks to work. It also causes drowsiness, so she takes it before bed. If we see improvement, we may be able to start reducing and eventually phase out one of the other medicines that she’s been on long-term.

On Monday, Leah received a dose of Avastin, which is one of the chemotherapy drugs she was on previously. She is only receiving half the original dose and tolerates it well. Again, we will have to closely monitor her kidneys. The Avastin may also help the pain behind her eye and allow us to discontinue the steriod- which would be great. She’ll receive another dose on the 22nd and likely the 5th. The Avastin is given through an IV and takes about two hours. She was a soldier when it came time for the poke, and all went well.

Every Tuesday, she sees the proton doctors, and they feel like she is doing well with the treatment; however, it could be several months before we know the final results. In February, she will have an MRI in Akron and will continue to be monitored every three months. The proton radiation can cause the tumor to swell, so even six months out, there might be no visible change. In the meantime, we hope that the symptoms that require medication subside.

The orthopedic surgeon in Boston feels that we are right on track with her scoliosis and leg length discrepancy. Surgery to close a growth plate was originally scheduled for January, but we’ve pushed it back to February. There needs to be at least four weeks between Avastin and surgery, because Avastin can complicate healing. After surgery, she will also have to wait four weeks before another dose can be administered. I feel like it will be tricky to manage, but Dr. Rush is confident we can make it work.

We have friends visiting this weekend, and Leah is in good spirits.

Boston is decorated for Christmas.

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And we a made special trip to Georgetown Cupcakes! Leah’s been a fan of Sophie, Katherine and the show for years.

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Thank you so, so much for the sweet cards and gifts that you’ve sent our way. They truly brighten her days. We are feeling completely overwhelmed by all the love and generosity. We are sincerely thankful, from the very bottom of our hearts.❤️

 

 

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