We are finally home! It has been an incredibly long two months, but we are finally home together as a family again. We have actually been home for a week now, but have been so busy enjoying being together and enjoying the nice weather, that I somehow put off writing this until now. I know we have so many people who follow Emma’s story and have been asking how she is doing, so I apologize for not getting this done sooner. We are so thankful for each and every one of you who continues to pray for us and support us through all of this.
Emma was discharged on Friday, October 17th from Madonna, after a six week stay there. It was a long and very hard six weeks for us a family, but it was what Emma needed. We are so incredibly thankful for the amazing therapists who worked with Emma and nurses who took care of her (and us) while we were at Madonna. I can’t say enough about how wonderful Emma’s therapists were. She was very sad to leave them. While it was most definitely what Emma needed, the rest of us are very relieved to be home. It was an extremely long, hard and exhausting six weeks for all of us. We couldn’t have done it without Haley being willing to drive to Lincoln and stay with Emma everyday since we both had to work. We owe her so much and are so incredibly blessed to have her in our lives, especially Emma’s life.
While I wish I could say Emma is back to doing everything she was before this nightmare started in July, she just isn’t there yet. She has made slow, but steady progress since surgery. Emma is sitting by herself again for extended amounts of time. She is also talking more and more each day, which is just wonderful to hear. Her left side is still very weak, but she has made some nice progress on initiating with her left arm more. As a result of this last surgery, Emma has quite a bit more tone in her legs than she did before. As a result any tasks that involve standing or walking are extremely difficult for Emma. She also seems to have some pain while standing that we are still trying to figure out. The doctors have been working on trying to find the right combination of muscle relaxers and meds for nerve pain to help give Emma some relief. She struggled so much with walking that a week before discharge the therapists weren’t sure if she would get it back, but in true Emma fashion, Emma showed some improvements the last two days. On her last day at Madonna she walked 20 feet two times in her walker with a little support. There were most definitely tears in our eyes that day!
She has even made lots of little improvements in the last week since being home. She is now spinning herself in circles while sitting on the floor. She can’t scoot yet, but sure wants to. We are hoping the motivation of being home with her stuff will get her going. She is so happy to be home with all of her toys and family. Every time we put her to sleep she cries because she wants to play some more. When we got home a week ago, she could only sit by herself for 20-30 minutes and then needed a break, but she not sits by herself for hours at a time when playing. She started back to therapy at PTC here in Papillion again this week, and was happy to see all of her therapists there. The first day back was a little rough, but she did much better on Thursday. She walked a total of 100 feet with a few breaks and some support. It is definitely a step in the right direction. It seems as if being home has been just what she needed.
Emma has now completed 5 weeks of her new chemotherapy regimen, Vinblastin. So far things have gone pretty well. Other than the fever and rash the first week, her counts have been ok and she seems to be tolerating it alright. We continue to pray that this treatment will hold the tumor stable. We go back to Boston in about a month for scans and only then will we know if it is doing what it needs to. The scans are still a month away and already I feel sick to my stomach every time I think about them.
As I sit here writing this tonight, I find it hard to believe that two months ago today we had sat through an eight hour surgery and were sitting in the ICU in Boston anxiously waiting for Emma to wake up. It seems as if the last two months have been a whirlwind in one sense, and yet seem as if it was actually a two years not two months in another. When I think about how she couldn’t sit, couldn’t hold a cup, couldn’t feed herself, and couldn’t even suck her thumb two months ago, I feel so incredibly proud of her for all she has overcome. Emma is such a fighter. I don’t know where she finds the strength to do what she does everyday. In two months she has gone from doing so little to being able to sit and play again. Most importantly her beautiful little personality comes back more each day. These last two months have been so incredibly hard on Brent and I as parents. It seems unbelievable that we have gone through two major surgeries. It is so incredibly hard to watch your child endure all that Emma has. We both hated that we had to work and not be with her all of the time at Madonna, but we can’t lose our health insurance and we had to somehow try to keep life together for Aiden. As I look around the house you can certainly tell that it has been over two months since we have done much here, but that is ok because we are all four here again. Emma still has an incredibly long road to recovery, but at least we are home. We are so incredibly happy and thankful to be home and be together.
We are also so incredibly thankful and grateful to all of you. We couldn’t have gotten through these last few months if it wasn’t for all of your prayers and support lifting us up each day. While we have had many days that test our faith, we have also had many that strengthen and restore our faith. We can’t even begin to mention everyone who has helped us, but please know that it is appreciated more than you know. We owe a special thank you to all of the doctors, nurses and therapists who have taken such good care of Emma and us and fought so hard to help Emma. We also can’t thank our staffs at Carriage Hill and Bellevue East for all they have done for us. The meals, cleaning, mowing, and unending support means more than you know, and we certainly couldn’t have gotten through these last two months without you. Our amazing family has been there for us every step of the way too, and without them who knows where we would be. Thank you to each and everyone of you, and please keep those prayers of healing and recovery coming for Emma. She has a long way to go, but we know she can get there because she is EmmaStrong!!