If you follow me on Facebook, I posted our story on the one year anniversary of Luke's diagnosis, but here it is again, since I know many of you may not have been able to see it:
"Let me take you back to the day Luke was diagnosed. Luke had been acting off and had about 10 bruises all over in not normal places, so I took off work and made a doctors appt and his baby-sitter (Yaya) Janna went with me because she knew I was anxious. Stephen was coaching a basketball game in Orlando, because he didn't think it was going to a big deal, just a visit to the pediatrician. So, Yaya and I went to his appt and she said he probably just has anemia, and gave me an order to go get a full blood panel done, and would get results back in a week or so, and that she would call us. I did NOT like that answer, and knew I couldn't wait that long. So Yaya said since we had good insurance to just take him to the ER and have them do a quick blood draw and get peace of mind then. SO glad we did. We took him to MRMC Children's ER, and this picture is in the room waiting for the blood results. My mom (Stephanie) came and sat with us since she was off work, and she knew the attending ER doctor. We had a different lady doctor who was seeing us, and she was very sweet. I remember the very second both Doctors and the nurse came in and sat down on the floor by my mom, it was bad. My heart sank. The doctors said it was leukemia, blood cancer and it was serious, and that they already called an ambulance to take us to Shands. They said regular white blood cell count is 4,000-7,000 and Luke's were 367,000. I will never forget the scream and crying that my mom and Janna yelled out in pure disbelief. I sat in that chair holding Luke, feeling numb and emotionless. The nurse asked if I was ok, because I was not crying or reacting. I just said, yes, I just already knew and had secretly prepared myself for this moment. I felt strong for a few minutes until I remembered Stephen had no idea that his son has cancer, and I had to call him and tell him. That was the worst phone call I've ever made in my life. I called him in the ambulance on the way, and the cry I heard broke my heart in a million pieces. I can't imagine the pain he felt being so far away. He didn't have a car since he drove the basketball team on the bus, so Mr. Deal drove an hour to get him and 2 hours to Gainesville. Then,I had to call and tell my Dad (Kenneth) and Shannon that their 18 mo. old grandson had cancer, hurt so much. Thankful that they came to comfort us immediately too. That night was a whirlwind of big words, that I had no idea what they meant. We were introduced to so many different doctors, signed tons of papers, and watched Luke get poked and prodded for the first time in his life. By far this day a year ago was the worst day in my life. We truly were walking through the valley of the shadow of death. We did not fear evil. God was and still guiding us with his rod and his staff and He comforts us. We learned how real God was this year. I don't wish this experience on anyone, but I do wish that everyone feels the presence of God like we have."
It was such a hard transition to move back home after living in the hospital and across the street from the hospital for almost 4 months. We had so much fear of Luke getting sick and us being an hour and a half away from the hospital. Now that we're ALMOST into maintenance chemo, (hopefully in next month or so) it's another transition. Transition back into somewhat of a normal life.
Trying to get back to normal life is the hardest struggle for me. Just leaving the house is such a hard task. I've created such a safe, clean environment in our home. Leaving it makes me short of breath. It's like I can literally see germs floating around and on people's hands. I try to smile and shake hands, and all I can think is, "Dear God, I hope they aren't sick, or haven't touched something or someone with germs." Most people don't know how I die inside when they touch my child with such a weak immune system. To someone normal, they just don't think that way. But, with a kid with cancer, a little germ can turn into a very serious problem. For the past year, my life has transformed from serving others, to serving Luke, and it's very hard to bring myself back into serving others again, when I'm still recovering from a year of hardships.
Some days, my greatest accomplishment is that I got out of bed. Some days I feel like super mom, cooking and cleaning, and getting dressed and all dolled up. Every day is a new battle. I'm thankful for my husband who has patience with me. He knows how hard this is on me. A social butterfly that has been couped up for a year, I've lost my social butterfly-ness. I will need time to be able to handle other people again. Especially people that don't understand what we've been through.
My husband is much better at this transition than me, since he has still worked and dealt with people on a daily basis throughout this year. I'm not used to being around people anymore. I find myself easily annoyed with people's complaints about unimportant things, because I know how "little" that really is the scheme of life. It's so hard to pretend like everything is back to normal when the fear of cancer and sickness haunt our daily life. It's so easy for people to say don't fear, when they've never faced their child having cancer.
Maintenance doesn't mean we're done with chemo, it just means we're going to the doctors once a month vs. once a week. We will still have to administer oral chemo daily, give antibiotics daily, and give a 5 day steroid pulse once a month. He will still get an infusion of chemo once a month, and a spinal tap with chemo every 3 months. Maintenance will last until June 18, 2019. So when I say transitioning back into a normal life...it still won't be normal. But, I'm trying to pretend like it is. ;)
So all of that to say...just have grace and mercy with those who are hurting or going through trials. Be strong for those who are weak. Pray for them. Encourage them. Most hurting people have a smile on their face, but I promise you, behind that smile is a lot of struggles. Treat others how you would want to be treated if you were in their shoes.
Thank you for the thousands of prayers, messages, and love you all have given my family. We are so grateful. ♥