We are into my second day alone at the hospital with Everett. So far he and I are doing pretty well. We spend most of his awake time in the playroom, which is fine with me. It keeps him happy and keeps me from having to chase him around the hallways:) How a kid with leukemia can have so much energy is beyond me, but I am and will be eternally grateful for his smiling face and his incessant mantra of "wanna play with me mom?!?"
Yesterday Everett's counts were up a bit and we were optimistic that they would continue climbing but today his numbers are down and he needed another platelet transfusion. The doctors say this is normal as his bone marrow recovers, but it's disappointing nonetheless. John and I are trying to stay focused on what matters most - that Everett does well with his treatments and beats this thing, but in the short term it's hard not to want him home so we can be together as a family.
It's crazy to me when I stop for a second and realize that 4 weeks ago at this time our life was just like everyone else's, and our biggest concern was getting our Christmas shopping done, cards in the mail, and presents wrapped. Now we face each day wondering what his blood counts will be and how his little body will react to treatments, and we pray non-stop that God will give us a miracle and cure our precious Everett. Every day is hard and I wonder sometimes how a family does this day after day for years at a time. But then I look around me at the other families in CHP and I KNOW that we can do it because we aren't alone and so many other families have gone before us...if they can do it, so can we.
I know that John has said it before but I want to say it myself - thanks to everyone who has sent us cards, emails, FB messages, posted on this blog, and sent packages to Everett. Every single word of encouragement and hope gets read and read again. John and I are so grateful and humbled by the outpouring of love and support that our family has received in the past 3 weeks. There are no words to describe the world we live in now, and we know that we couldn't get through this without all of you giving us the strength that some days we don't feel we have. Please keep posting, emailing, FB'ing, etc. It brightens our day.
You guys are always in our thoughts and prayers here in Downingtown! We love you and miss you all so much and hope that everyday presents with some smiles and moments of peace through all this stress and chaos. Give little man a huge hug from us and stay strong, we are wishing for higher counts tomorrow and to hear of news that you will get to go home and spend time as a family! Much love :)
ReplyDeleteEvery day, I start the day thinking and praying for you all. I hope for good numbers and happy play time. The strength that is in the your family is amazing. Give "bear hugs" to Everett for me.
ReplyDeleteIt kills me that I live so far away and have never been blessed with the opportunity to meet the boys or you Val. I pray for ya'll every waking moment and every person who knows me now knows ya'll and is following and praying too. I am preparing something I think Everett will love and get a lot of fun moments out of. One day soon, when best for ya'll, I will be up to visit and give everyone a big hug. Keep your head up and your faith strong. He is always watching over us and will protect us. God bless, Stefanie Trumbauer Schilleci and Ryan Schilleci
ReplyDeleteI know it’s been a long time, but I just heard about Everett. I don’t him and can say we don’t really know each other anymore either. But I just wanted to say I think about him and his well being many times a day since I heard. He looks like a sweet and precious little boy that certainly doesn’t deserve any of this, I’m not sure anyone does. I wish you and your family all the best, and will continue to keep you all in my thoughts. Chrissy
ReplyDeleteChrissy,
ReplyDeleteI appreciate you taking some time to leave us a message. Everything else, including the past, couldn't be more irrelevant right now. We're just so grateful for anyone who will take time to read his story and respond to our blog. We need everyone in his 'corner' as this will be a long, trying time for all of us. Feel free to subscribe or friend me on facebook if you'd like to get updates.
Stef,
I'm hoping we can do something special this summer and maybe get everyone together in SE PA. We'll see how he does and maybe everyone can come and see him.
Love to all,
John
We are so sorry to hear about Everett's illness. He appears to be so adorable and healthy! It's a blessing that his blood counts are now up and you are able to travel home for awhile. Our prayers are with you and your family. Love, Aunt Jeanne
ReplyDelete