Two years ago today our lives changed forever. I’m filled with so many different emotions today. Some are feelings of sadness, others of thankfulness for the many blessings we have received on this journey. Even though it has been two years since we heard the awful diagnosis that Emma had a brain tumor, it seems to hurt just as much today as it did then. You would think it would get easier, but this day seems to bring back so many memories that I wish we would have never had to experience. I can still so vividly hear Dr. Sindelar giving us the diagnosis. I can remember holding Emma so tight and being scared like I have never been before. Much of those first days after her diagnosis are a blur, but the heart ache and pain of those days is something you never forget.
There have been so many times that I have wished that we could go back to that time before Emma was diagnosed. Life was so good…so easy. I wish we could live again without the constant worry about the tumor, therapy, and treatments that never goes away now. While this has taught us to live every moment of life more fully now because we never know when it will change, I would love to be able to live without that constant worry. Oh how life changes in ways that you never expect. While this isn’t the journey we planned or wanted, we have done our best to continue on and be happy. At times I think back to the people we were before all of this and wonder if those people are still around. I feel like we have changed so much in the last two years. In some ways the stress and anxiety of this journey has changed us. However, I also feel that parts of this journey have changed us for the better. We are stronger now than we ever thought we could be, although many days we don’t feel that way. The kindness we have been shown has helped make us better and more giving people. The strength that Emma shows has made us stronger. This journey has taught us about faith, trust in God, love, and living life to the fullest, which I think has changed us for the better.
This journey has also opened our eyes to the fact that there are entirely too many kids fighting this horrible disease and that there is a lack of funding to support the development of much needed new treatments. We have met some of the most amazing kids and families on this journey. We are so thankful for their support, but the fact remains that there is still such a need for a cure. It is this fact that drives us to continue to raise awareness and funds so that we can someday find a cure for this disease. We are also so very thankful for each and every one of you who have joined us in this fight to find a cure!
While it is easy on days like these to get caught up in the sad emotions, it is also important to focus on the happy emotions too. We cannot even begin to thank people for all they have done to support us these last two years. We have been shown so many acts of kindness and generosity from not only friends and family, but people we have never met. I am always amazed by the people from near and far who follow Emma’s story and those who reach out to us to tell us that her story touches them. In the midst of the hardest and darkest days we have experienced we have been blessed with so much goodness and lifted up and overwhelmed by the prayers, support, and love that have been given to us. We couldn’t make it through this journey if it wasn’t for the support we receive from so many. We draw our strength from your prayers and acts of kindness. There aren’t enough words to thank those of you who follow Emma’s story for all you have done for us. We thank God each day for the kindness, prayers and generosity that have been given to us.
As I sit here tonight writing this post, I look at Emma scooting across the floor, playing with her toys and jabbering away, and I can’t help but feel thankful and blessed that she is here with us and happy. She amazes us everyday with her strength. She has endured more than any child should have to. She has had two tumor resections, several other surgeries, over 100 chemotherapy treatments, and spent countless hours in therapy sessions trying to improve her motor skills. She has every right to whine, but instead she takes most of it in stride and with a smile on her face. She has come so far in two years. While she can’t do everything a two year old normally does, she has worked so hard and shown how tough she is every step of the way. We are so blessed to have such an amazing little girl who shows daily the true meaning of living life to the fullest with a smile on your face. She is truly EmmaStrong!
I have been avoiding writing a post for weeks now. I meant to write something at Thanksgiving and then the craziness of the holidays with buying presents, wrapping, baking and traveling got the better of me and I just never got an update done. So I guess now that I’m writing, I can fill you in on how Miss Emma is doing.
While the final decision of Emma’s scans in November wasn’t as bad as we initially thought, it was still somewhat inconclusive. The not knowing for sure if the chemo is working or if it was just imaging differences has made for some added stress at our house. Each time Emma pulls at her ears or seems to be a little off balance, we all pause and wonder is it the tumor or is it just Emma being a two year old? We have her next scans scheduled for February 18th in Boston, and I suppose until we hear those results all of those second thoughts about everything will continue.
We feel very lucky to have had a pretty healthy last month and a half and been able to enjoy the holiday season with our family. Emma has been doing well. Her counts have remained solid. They haven’t been great, but nothing too low which has allowed us to travel and see family through out the holidays. Emma has continued to make progress at therapy as well. She is talking more and more all of the time, which is music to our ears. She is scooting everywhere again and is walking pretty well in her walker again. Her stamina for walking is still a work in progress, but she is doing better. Both her OT and PT said that they feel she is back to where she was before things started going down hill this summer and even stronger in some areas. She is also using her left arm more spontaneously than she has since the first surgery. We have lots to celebrate and be thankful for when we think about her progress in therapy and how well she is tolerating her chemotherapy.
We are so incredibly thankful to have been able to spend time together as a family for Christmas as well as with our extended families. We had a wonderful six days of Christmas with grandparents, aunts, uncles and cousins, and we are so thankful for that time together as a family. We hope that each and everyone of you had wonderful and blessed holiday season with your loved ones as well.
On a sad note, my uncle, Merrill Krebsbach passed away this week. He was a good man who loved his family very much. His family asked that the memorials be given to the EmmaStrong foundation. This gesture means more to us than you know. We pray that you find peace in the coming days and thank you for your generous support.
Thank you to all of you for continuing to follow Emma’s story and offer our family so many prayers and such amazing support. We are so thankful for you! We hope that 2015 brings good things to each of you and your families. We thank you for being EmmaStrong with us!!