Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Wednesday, December 24, 2014

4 Year Anniversary

Today marks 4 years since our journey with Emily's diagnosis of Stage IV Neuroblastoma. December 23, 2010, 4 years ago, our little girl started a fight with cancer. Its hard to believe that she has been fighting this disease non stop for four years, but she has. While we would like to have a anniversary date for an end of treatment, for NED (no evidence of disease) for so many years, it is just not part of our anniversaries dates as of yet for Emily, but we will continue to hold hope that we will one day have them.   While we certainly wouldn't want to hear anyone say Happy Anniversary, what we want to say is we are so happy that Emily one amazing girl and making such huge difference in this world. She always amazes us. after everything she has been thru, and continues to deal with, she still walks through those hospital doors or into any situation for that matter, with that infectious smile. Her passion in life is was most of us take for granted. This was never a group that we wanted to be a part of, but we are, and along the four years of holding Emily's hand while she continues to fight with a smile, we have learned so much along the way.  We have met some really good people who continue to stand by our side while Emily fights and through her journey we have learned so much about family and friends.

Doug and I still remember like it was yesterday the day we took Emily to the hospital and when we were told that they found a tumor in our daughter's body. The ambulance ride to Children's Hospital of Richmond with Doug following behind Emily and I, and the extended stay inpatient during Christmas while trying to determine what Emily was diagnosed with.  All we wanted to do was to take our daughter home and be able to celebrate Christmas with our girls at our home.  Doug and I still remember being told by someone in the hospital that this gets easier with time,  and we have found that this doesn't get easier with time, the only thing we have found is a "new normal" that continues to change constantly as you go through the different treatments with your child, you just learn to deal with and make the best of it.

Like I said, over the past four years we have learned so much, not just about cancer, but about family and the importance of family,friends and community. Having honest and loyal family, friends and community a part of our journey, makes the journey with Emily so much easier.  The past 4 years has been hard on Doug and I, and most of these years have done them alone taking care of our girls while Emily fights for her life, but we have done it together. We continue to do it and make things work, even though we wish it would have been and continue to be different..  So many friends and family have walked in and out of our lives, because either our situation is just too much for them to handle, or just not something that they want to be a part of, just please remember while we do have so much going on in our lives taking care of Emily,  that doesn't mean that you can't talk to us and tell us things because you think it might be too much for us to handle, because it is not.  Remember we are normal people too who just like the rest of you want to be part of a "normal life".  Today we just want to enjoy the love of family and being with family and watching our girls smile, laugh and play. and feel that love that surrounds them from family that loves them. 

While this 4 year anniversary, we wish we could say that Emily is NED, we want this 4 year anniversary to be one that we are happy that Emily is thriving in life and doing so well going to school and running around and enjoying spending time with her sisters and her dad and I. We look at our little girl every day and we are so happy that every day we can celebrate another day with her and watch her sleep, that we can hear her talk and make jokes and talk about her friends.   Emily is a mommy and daddy's girl and to watch the love that she has for her parents, and her family would make one's heart melt.  We love hearing our daughter talk about all the good things that she wants to do, she has a heart of gold and a smile that you would never forget. 

Although right now, Emily's treatment plan, there isn't much to update in that part of her life. She is doing very well, loves going to Crenshaw Elementary School & loves being part of every event & function. So even though you don't hear from us to much lately, these updates are still hard because that means every time we sit down to write that means that Emily's Journey for the past four years is true and a journey that we never imagined we would be a part of. We are so happy that Emily is doing well, we always try to maintain a positive approach to every situation we walk into but we are not naive to the fact that this could change in any moment.  We know that the "new normal" that we live today could be ripped out from under our feet, everything could change and Emily could be spending a lot of time back in the hospital again. We don't and never have taken any of this for granted, every Birthday, every hug, every "I love You", every single moment!! 

Thank you to all of our friends, family and community who continue to stand behind our journey with Emily and hold our hands and be here with us as we continue to watch Emily inpsire.  Without all of you, we couldn't be where we are today so we thank you so much for all of the love, compassion and thoughtfulness each of you continue to share with us, it means so much. Thank you for the past 4 years and we thank you for continuing to be with us.

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