(The Gehring family presenting a check for $15,000 to Dr. Goumnerova at Boston Children’s Hospital)
Well, it is official, we are headed back to Boston for surgery on Monday, August 4th. We will fly out to Boston on Thursday so that we can be there for pre-op appointments on Friday, then surgery on Monday. The surgical procedure has been discussed many times by many of Emma’s doctors, but the last time that we talked to Dr. Goumnerova she felt that the best plan at this point would be to do just a shunt placement to relieve the pressure being caused by the excess fluid. There were many discussions, but she feels right now it is probably the safest thing to do as it does not compromise any of her neurologic function, this may change by surgery day but as of right now that is all we are planning. They want to see if the shunt placement will eliminate the side effects that we are seeing before going in and doing more resection. She said that another resection is always a possibility and that we can do it later if Emma needs it. Only doing the shunt does mean a less invasive surgery and hopefully a quicker recovery for Emma. At this time we don’t know for sure when we will be coming home. It sounds like Emma will spend a few nights at the hospital after surgery and then we will have to stay in Boston a little longer while she recovers before flying home. Her post-op appointment is set for August 13th, but they said it could be sooner if she is doing well. I guess we will just wait and see how it goes and hope to get back home as soon as possible.
Emma has had a rough few days. I don’t know if we notice the side effects more now, or if they or just getting that much worse that quickly, but we are noticing her struggling a lot more. Emma’s balance continues to be hard for her, which means sitting, scooting, and pushing herself up continue to be very hard for her. She also wants nothing to do with walking since getting her boot off last week. It is disheartening and so very hard to watch her struggle to do things that she had mastered and worked so hard to learn. I hope and pray that surgery helps to quickly improve these things. She also has been having a hard time resting well. It just breaks my heart and we are praying that she stays strong until surgery day.
It has been a whirlwind the last week trying to get things together and arranged so that we are ready to leave. Brent and I have been frantically trying to get things together at work as we were supposed to start back to school on August 7th. After a few days of working at school we are both getting close to having that part of things taken care of. We have also been frantically getting flights and hotel rooms taken care of, and getting things lined for Aiden while we are gone. It is much easier to plan these trips when you have more than a few days to do it. We are hoping for a productive few days to finish up the to do lists and packing so we are ready to go on Thursday.
Our sweet little Aiden turned 5 last week. It is hard to believe he could be that old already. His birthday party was supposed to be next weekend, so we quickly threw some things together and had a small party for him last weekend so we could all celebrate before we leave. We are so thankful that so many of our family could be there to make it a special day for him.
I know Brent talked about this in the last post, but we wanted to thank everyone again for helping us to raise money and awareness for pediatric brain tumors. The money raised from the "Go Gray in May" t-shirt drive and the first annual "EmmaStrong Drive for a Cure" Golf Tournament allowed us to donate $15,000 to Boston Children’s Hospital. The money went to Dr. Goumnerova’s development of a tool that will be used during surgery to tell if the surgeon is touching brain tissue or tumor allowing for more successful tumor resections. We thank each and everyone of you who helped us in raising this money and raising awareness. You are helping to make a difference and we are so thankful to you all. We couldn’t have done this without each and every one of you.
Thank you to everyone who has continued to support us and pray for Emma. The last week and a half has been hard, but your support continues to lift us up. We were very thankful for the time that we had together as a family in Boston and NYC and managed to enjoy ourselves and make great memories despite the depressing news we received from the MRI. We are also very thankful for our many friends and family who have been helping us here the last few days with cleaning, getting things ready at school, meals, and your never ending support. Thank you for all of the continued support and prayers. Keep those prayers coming this week!