June 24, 2008
"Good morning, it's Tuesday and we've officially been here for two weeks (sigh). Last night, Kole got a little bit of morphine to relax him and to ease a little bit of discomfort. He hasn't been wanting to eat as much as we'd like, and we put our heads together with the doctor and she suggested the morphine to take the edge off the mucousitis (sore mouth). He seemed to be more "chilled" last night afterward and slept really well. This morning he ate a decent breakfast of english muffin, cheerios, and raisins, and drank pretty well. Physical therapy showed up this morning (yay!) and gave us some techniques that we can use to help Kole start walking again. He is able to bring himself up to sitting or standing position by himself, but can't take any free steps. So now he has a little push-car that he will be pushing around in no time, we're sure. He is already making progress, he slid off the "couch" in the room and started "cruising" by himself, up and down the couch, picking up toys. The central line is now totally out and healing. They put an IV in his right arm yesterday, and Kole was really frustrated because he had no use of his dominate hand. Then it leaked and when the girls came in to fix the leak, they accidentally pulled it out. We were not happy about this, but took it as a blessing in disguise, because then they had to put another IV in, this time in left arm (and a little higher up on the arm), so now he actually has use of both hands. He is happier. Today he has a real outfit on! I brought one in from the diaper bag and it's nice to see him look like a "real boy" again, no more gowns. They recommend that Kole just wear onesies again, for easy access, but we're kind of thinking, do they make 18-24 month onesies? He hasn't worn onesies in awhile, but if anyone has any 18-24 month onesies they don't need anymore, please let us know. The doctor said she would like to keep Kole on a very small scheduled dose of morphine throughout today to see how he does, if it makes him eat a bit easier, then we hope we won't have to use the feeding tube. I don't like the idea of him being on the morphine, but also don't like the idea of the feeding tube, so, we'll see. Hopefully he just eats and eats and we won't need either soon. They aren't going to do any blood today, she said, they are giving him a day off from being poked. We will most likely be able to have visitors again by Thursday, his ANC was at complete zero yesterday, which means zero immune system right now (but that's what they want). We'll see tomorrow if they are coming back up, we think they will. And we were told at this time red blood cell count looks good, so no transfusions necessary (yay!). We will keep you posted on any further developments. Thank you for ALL of your prayers and keep 'em comin', the tumor is shrinking!!
Just wanted to update a couple things before we turn in....Kole had a great afternoon and evening. He ate a great lunch and watched the movie Cars (he loves Lightning McQueen!). The doctor ordered regular, low doses of morphine and I think it is much needed. He, behaviorally, is so much better with it. His mouth doesn't seem to bother him so much and he is eating better! One little setback we had today was the IV, it seemed to be obstructed and then they thought they would have to redo it again (sigh) but turns out it is actually okay and he received at lot of things through it today just fine. This afternoon, our amazing wonderboy actually WALKED BY HIMSELF the whole way down the hall (God bless morphine when you need it)! It started out with help from a walker, but then he was like, nope don't need it! And off he went. He can now squat, and come back up to a standing position on his own as well....he has his legs back! At least for now. And because he ate so well, he didn't need a feeding tube like they thought he would. He is getting some hydration through the night via IV, but that's all just added bonus. He is drinking well, too. We are looking forward to his ANC level coming back up, we'll know tomorrow where we stand. We hope they look good by Thursday, and then, hello weekend visitors! We reached a lot of milestones today and are so glad we can share them with all of you. God bless, and thanks again for your amazing wave of love and prayers, they truly are miraculous!"
Today I worked more on the crib spindles, a bit on Koles hair and I was reminded of where we began with Kole on day 324. This is not my story, I am simply sharing Koles mother, Renee, carepages.com journal she kept during this space in time. I've struggled with this story, it hits so close to home, it could be me - it could be my kids. I have three adult relatives that suffered (and lost their fight) from different types of cancer and I imagine a child would be twice as awful. This is the first time on the blog I am sharing someone elses "blog" of sorts. Renee has agreed to share Koles story with us. Normally the drawing days are filled with my memories from the past or day to day happenings. This time it is Renees words I share. I hope after sharing these beautiful souls with you - you take action. Kind words to others, compassion, empathy, a hot meal, a visit to the hospital, support, love, listening ear... Turn your love light on.
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