Back in Boston – Sunday, August 23, 2014

The last few days have been such a whirlwind that I’m not even sure where to start with this post. As most of you already know, we talked with Dr. Goumnerova Thursday morning and they doctors in Boston unfortunately feel that it is time to do another tumor resection surgery. We found this out about 11:00 Thursday morning and things moved extremely quickly from there. Dr. G. is only available for surgery this week, so surgery is now set for Wednesday. It will be similar to Emma’s first tumor resection and will take most of the day. She will then be in the hospital for 4-6 days to recover, and then Dr. G. said we will need to stay in town for another week and a half to two weeks before Emma will be ready to go home. We also talked with her some about her recovery and if she will need more inpatient therapy or if outpatient therapy will be enough. She said we will have to see how surgery goes and that it will also depend on what works for us as  a family. Needless to say, this uncertainty of not knowing what is to come after surgery adds yet another level of worry for us.

As Emma likes to do, she added a little more drama to Thursday by throwing up and earning us a trip to Children’s in Omaha where they ran fluids to rehydrate her. Dr. Abromowitch also prescribed oral steroids for Emma to help with swelling and pressure. When we left Children’s Emma still didn’t look good at all and was very tired. Dr. Abromowitch said she was ok to travel so we decided that we needed to get her to Boston sooner than later so that if she got worse we were here with her doctors. So in only a few hours Thursday night we managed to arrange flights, hotels, a place for Aiden, and get ourselves packed. It was quite a night, but with the help of several special people we got it all done.

We flew out to Boston Friday morning, and thankfully Emma traveled well and handled the flights well. We are now comfortably hanging out at the hotel just awaiting surgery Wednesday. We are very thankful that the steroids Dr. A. prescribed seem to be helping. Emma has been better the last few days. Another side effect of the steroids is increased appetite, which has also been good because Emma has at least eaten and drank a little better the last few days too. We were even able to go and meet Bri and Jack Hoffman for dinner last night since they are in Boston as they start Jack’s new treatment. We had a great time with them at dinner. it was so nice to get out for a little while, see some friendly faces, and get away from just sitting and worrying. We were so happy to hear that Jack is doing pretty well on his new treatment so far.

As I sit here in the hotel, it still seems unbelievable that we are here again awaiting another brain tumor resection. Part of me feels like the last surgery was so long ago and  we have overcome so much since then, but the other part of me feels as if we just did this and there is just no way we should be back here getting ready to do this again. I really feel as if we have just been sucker punched in the gut yet again and I just wish this feeling would get better, but it doesn’t seem to right now. I really don’t know what is worse though, the feeling of uncertainty before for the first tumor resection surgery, or the feelings we have now because we know just how bad it is going to be and how rough and extremely long recovery is. Emma has fought so hard to gain back what she lost after the first surgery, but it took months and endless hours of therapy to learn the simplist of things. It breaks my heart to think that she will have endure all of that therapy to relearn all of those things again, so soon after she had finally learned them the first time. And of course then there is just the absolute fear of having to put her through another tumor resection. It absolutely scares us to death to have to put Emma through another surgery like this. There are so many things that can happen during a brain surgery that it is enough to worry us to death. We are trying to have strong faith right now that Emma ‘s medical team will have great wisdom and take great care of her. We are also praying for strength for her in the coming days, as well as strength for us as parents as we try to get her through these next obstacles.

I don’t even know where to start in thanking people, we have been so overwhelmed by the support and prayers that we have been receiving for Emma. We can certainly feel the power of those prayers all the way in Boston, and they will be what helps to get us through these next weeks. We want to especially thank the Carriage Hill staff and Bellevue East staff for their unending support. I don’t think we could have gotten everything done that we needed to before we left, had they not been there to help and volunteer to take care of so many things for us. We also want to say a special thank you to our special angels who helped us out with getting flights on such short notice, and the angel who has offered to help with hotels. We are so blessed to have such amazing friends. We have once again been reminded that in some of our darkest times, we have been lifted up by the kindness and generosity of so many. Also, thank you to those of you who have recently ordered new shirts and bracelets to help raise awareness. While we may have taken a few steps back in Emma’s treatment the last weeks, we are more now than ever reminded of the importance of raising awareness and continuing to raise funds to help find a cure for this horrible disease. Please take some time to order yourself and your family some T-Shirts.  Do It For The Kids.  Together we can and WILL make a difference.

We thank you from the bottom of our hearts for all of the continued prayers and support that help us to stay EmmaStrong!!!!!