Day +196, 366 days post diagnosis, 29 days inpatient...
Wow, ONE YEAR, amazing. It is incredibly overwhelming when we sit back and think of everything we have witnessed. We miss our home, we miss our family, we miss our friends, we miss our Annunciation family, we miss more than anyone should even fathom. Today Darci put it best when she said today we don't celebrate one year here, we celebrate Evan being here one year later. We have seen many not make it in the last year, they will always be in our hearts. We now have many new friends because our children are literally fighting for their lives. We have met children who are true real life heroes.
In one year, Evan has had over 90 days of blood products, over 100 scans (CT, MRI, ECHO, EEG, EKG, X-Ray), therapy sessions and antibiotics too numerous to count and more medications than any one human should ever see. He has completed three rounds of protocol chemo, two rounds of high dose transplant conditioning chemo, one rejected bone marrow transplant and one successful bone marrow transplant. He has fought an unexplained GI bleed, hemorrhagic cystitis, skin and gut GVHD and ppancreatitis. He has fought one long and hard fight. He is more than our son, he is our hero.
We have watched our children grow quite a bit in the last year. Our boys love one another more than one can imagine. They need one another so much and miss each other immensely when they are separated. Being separated from one another and our home for one year has started to take its toll on all of us.
Today, Evan was given permission to eat! What a great way to celebrate today. He decided to have a few sips of blue gatorade, half a banana, a few bites of Kraft mac & cheese and some goldfish. It may sound like a lot, but he didn't really eat much at all. His Labetalol was stopped and his Enalapril was re-started via his G-tube while his IV version was unchanged. We will begin to wean that off in the next few days. His long-acting insulin, Lantis, was increased to 20 units twice a day and his insulin drip was stopped. We are excited to be making small steps in the right direction. Once we get his biopsy results we will be able to fine tune his latest plan.
We would not have been able to survive the last year without all of you. We have been so blessed to have such amazing family and friends. We have had perfect strangers become life long friends. God has placed all of you in our lives for very special reasons. You are all part of Evan's Dream Team, we must stand united as Evan "has a dream to go to." We thank you in advance for your continued love, support and prayers as we continue upon our journey. We live holding onto our hope and faith. Hope in tomorrow and hope in a cure that one day the beast will no longer win. Faith in our God's plan for all of us, our faith guides us daily in our walk with Christ. Always remember to tell your loved ones how much they mean to you, hug those you love a wee bit tighter, be thankful daily and never give up hope. No matter how dark some days may be, there is always light ahead. May you be wrapped in the light and love of Christ. Good night and God Bless.............
