DEEPLY LOVED AND REMEMBERED WITH LOVE, A VERY SPECIAL BOND
A few months ago, when the last Edmarc newsletter came out, it was almost surreal to see Jase’s name in the obituary section. We honestly haven’t even completed his headstone yet because that would make it too real. However, seeing his name in the Edmarc newsletter reminded us of the good, bad, and the ugly of the last few years. It also reminded us how wonderful it was to have Edmarc by our side every step of the way.
Jase was diagnosed with Primitive Neuroectodermal Tumors (PNET) unofficially in July of 2013, officially August of 2013. Jase was in between the Portsmouth Naval Hospital and Children’s Hospital of Philadelphia (CHOP) from July to December of that year with only one day at home. During that day, we were introduced to Edmarc; however, the next day Jase stopped breathing and was rushed back to the hospital. We then headed to CHOP shortly thereafter. As soon as we discovered Apheresis (the infusion of Jase’s own good blood) didn’t work and received the news from CHOP that we only had about three months left with Jase, we came home and started working with Edmarc.
Alicia had been our main nurse from the beginning. Although, it didn’t seem as though Jase liked her too much when she had to do his dressing changes, she definitely was his favorite. There were times that I thought he would pack his bags and leave with her willingly if I allowed it. Of course, being Mommy, there is no way I would allow him to leave my sight!
Once Jase had his broviac (permanent intravenous lines) removed though, and they put in his port dressing, changes were no longer required. I don’t think Jase ever screamed at her again! He was always excited to see her, share his toys with her, and sign to her. Even at the end she had a way with Jase that only a nurse like her could. I was always in awe.
Not only Alicia, but all of the Edmarc nurses taught us so much. I remember the first time we had an IV going for Jase at home. I was so scared! We have done everything under the sun for Jase, except to start an IV for him. Luckily the nurse who came out started it for us and was able to explain the whole process to us.
There were many times I called the “on call” phone number for help, and they were always more than happy to help us.
Through the end of Jase’s physical life here, and even now, Edmarc has been amazing. The last week of January 2015 we were told that we didn’t have much time left with Jase, a week at most, maybe. Alicia was there for the entire eight days that we needed her. We did our wish weekend in Virginia Beach, on the beach, and she made her way out several times a day to aide us in keeping Jase comfortable. Although she could not make the decisions for us, it was nice to have someone we trusted back up the decisions we made for Jase.
Without Edmarc we would have been bound to the hospital longer than we had to be. Life for a child with cancer is not a great life as it is. Life for a child with cancer who is stuck in the hospital for his/her entirety is no life at all. Edmarc made it possible for Jase, for our family to live and, at times, be able to pretend he didn’t have cancer.
Even though they may not know it, our Edmarc caregivers are the reason that Jeremy and I chose not to move on. They are the reason that we are choosing to move forward. There is a life after cancer, and because of Alicia and all of the wonderful people at Edmarc, we are living it, moving forward, in memory of our son Jase.