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Wednesday, May 20, 2015

May Updates

Today is JJ's 11th birthday!  Wow, how time flies!  When Scott was first diagnosed, JJ was only 2 years old -- I wasn't sure back then if Scott would be with us to celebrate JJ's 11th birthday but he is a fighter and we are lucky to live in a time of great advances in cancer treatments.

Scott saw Dr. Lassman today and it was fairly uneventful (which is good!).  Scott continues to wean of the steroids and we hope that he'll be off of them entirely soon.  He has been pretty tired lately and the doc says this is probably due to the steroid wean.  His liver functions levels are almost normal!  Woo hoo!  After he is weaned of the steroids, the doctor will start decreasing the anti-rejection medication that Scott is on for his liver.  We will need to get his body strong enough should he need another treatment for the cancer.

We had a very slight hiccup this week as Scott started gathering fluid under the incision site again.  We talked to his surgeon and he said this means that the shunt is malfunctioning.  The remedy for this would require surgery and the fluid is not causing any harm so we will just leave it for now.  As long as there is no broken skin, he should be fine.

His next MRI will be the first or second week of June so start thinking positive thoughts and praying for a decrease in the tumors!  We are all still very hopeful that the Keytruda immunotherapy has a delayed reaction (which is typical) and the tumors start shrinking!  That would be amazing!

xoxo,
Julie

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