Clinic - Day 1 Round 9

Emily had clinic today for us to talk with Dr Gowda to go over results and where things stand as of today and how we are moving forward.

Final results show uptake in left base of skull, right sphenoid, left orbit and multifocal aras in the vertebrae includind T8 and T11 through L1 and L4. There is stable uptake in both iliac bones and proximal femurs. So in comparison to the previous scan, they are stable with no new areas of activity.  The final bone marrow results did give Dr Gowda some answers on how Emily's bone marrow is working and able to produce the red cell, platelets and white blood cells. There is marked thrombocytopenia (low platelets) which we know. The bone marrow also provided us some answers with why Emily's platelets are having a harder time to come up when on treatment. The right side of her marrow shows 70% cellular make up of red cell! platelets and white blood cells. Dr Gowda said children on chemo they expect to see 70-80%. Emily's left side shows 50% cellular make up. These answers some questions on the platelets. Because of this though Dr Gowda wants her platelets to always be above 30, so this could mean that she has more platelet transfusions while on the chemo regiment.

Dr Gowda agreed with moving forward and doing two more rounds of the Avastin/irenotecan/temodar trial. Thankfully today her platelets were 41 and she didn't require platelets and she was good to start. So today started day 1 of round 9!!! Wow round 9!!! Scary, but Emily has had a lot of chemo under her belt, but she is doing great. Dr Gowda doesn't feel it's a time to not do anything, and honestly I'm not there either being that she just progressed in December. But as parents it so hard to keep it going, knowing so much more now that what we knew before. But stopping could also mean giving the neuroblastoma time to come back. So we move forward, two more rounds them back to Michigan for scans. Hopefully the next visit is nothing like this one was. 

Dr Gowda still wants Emily to get a bag of her stem cells sometime in the future, but he is ok right now with holding off on them. 

Today while getting her avastin, Emily started doing some of the work that was sent home from school for make up for missing today.  So proud of this girl, she just keeps rocking.  Dad and I love watching her learn, and she is doing so well at school. Daddy went and had lunch with her again yesterday and she enjoys that.  She also is really starting to get used to the Benadryl and doesn't sleep as long as she used to with it. But today put a interesting day with the fire alarm going off at the hospital and everyone having to go out. Interesting. Thankfully Emily was done and Elaine was able to get heperineze her line and when we got home, I went ahead and deaccessed her. 

Remember to hug and kiss your kids and tell them you love them. Have a good weekend.