Ricki continues to have her good days and bad days. On her good days she still has tumor pains in her chest. But she gets out and pushes herself. For example, Monday she went to the Clarke planetarium. She came back excited because she loves science. She was exhausted and went right to bed. The next day she was miserable and slept all day and night.
Wednesday was our visit to the NF clinic. Dr Viskochil was wonderful to take time with us. He shared some things he had learned from the recent NF conference in Washington DC. He explained how a Dr in the UK was researching pain on NF2 patients and discovered that those with Mosaic mutations experienced more pain. So basically what I gathered is that because they still have some good cells that can react to the pain causing them more pain than those with the inherited NF2. This Dr on the UK is hoping to start a pain trial. Also he mentioned that hopefully there will be some NF2 trials on the horizon. They can't come soon enough for Ricki...
I am not sure why but the Drs just have never taken the time to show us some of her MRIs. They just give us a quick look at the one they are focused on and that is it... For many years we have just thought she had one tumor by her lung. Then last year we found out there were two and the other one at the level of her aortic arch.- not a great place for a tumor. Dr Viskochil took some time to review the thoracic area and now we find out she actually had 3 tumors in that area. The one in the brachial plexus area which they removed but she still has another one on the top of her left lung and the one by the aortic arch.. It was disheartening to see that tumor sitting right by the aortic arch. I guess that is maybe why they hadn't shown us... Dr Viskochil basically said no one would operate on that tumor:( ugh! All the more reason there needs to be a trial come available soon to start shrinking that tumor.
Next we got to meet Leah who also has NF2. She is so cute with red hair and reminds me so much of Ricki when she was that age. They both have strong spirits. It is always comforting to visit with other parents who understand what challenges you face as a parent. Leah has had some pretty tough battles to fight and continues to be in our thoughts and prayers.
Thursday Ricki pulled herself together and went on a small hike to antelope island. She enjoyed it as much as she could with the pain she was experiencing. She is such aamazing gal! I am so impressed with how she has learned to work through the pain. Bless her heart though she was so tired she fell asleep on the bus on the way home and then while she was still sleepy and not realizing they weren't home yet texted and ask me to come pick her up...
We are trying to get more information to Dr Blakeley at Johns Hopkins for her to review. She has worked with far more NF2 patients and so we are hoping she can think of some other solutions to give Ricki some relief.
All in all it's been a good week!