Dearly Departed Drawings ~ Kole {day 333}

June 17, 2008

"We decided to spend Kole's first, alert night in his new room with him. We couldn't stand the idea of him waking up through the night with strange people and noises and blips. We didn't really get good sleep, though. The room only has a cot, and we had to share it (smashed in a ball). They came in bright and early to do rounds and vitals. The oncologist on call this week, said his lung doesn't seem to be draining nearly as much. They have ordered an xray to see if there is a clog, but we are praying that it is because there just isn't as much in there. This morning I have to say his appetite seems to be back. So far, he has had several handfuls of Cheerios (by himself) and 3/4 of a fresh banana (by himself). Also he is chugging back the juice. I am keeping close eye, afraid it might all come back up, but so far its staying down. Today we pray the echo comes back good, the xray shows no clog, Kole gets some strength back, and that nasty tumor is shrinking. Thank you for all your prayers. Kole lays in his crib at night and gently whispers into the dark, just talking to himself (?). Perhaps he is seeing/talking to the angels you all have prayed for to come watch over him. Thank you and we love you all.

Kole just started running a fever, not terrible but enough to make us worry. They said we should start to see a drop in his immunity this week following the chemo, it is scary to think it is happening so quickly. They just gave him Tylenol and we hope that's all he'll need. They also drew some blood to make sure nothing's "brewing" on the inside. Kole is still doing considerably well, although today he is very clingy and whiny and seems to have a shaky tremble. We are all concerned with his drop in weight as well, my fat boy just looks so skinny. I am being told this is all a normal response to the chemo. I just had a meeting with a woman from Child Life, and she brought us some activities, books, games, movies, and bubbles. Kole loves the bubbles. He is watching Cars right now with his daddy, and we hope he will take a nap soon. He has stimulation overload, people just keep coming into the room, mainly to talk to me.  The best news I have had all day though, is this - our good friend William Seiler, who I have to credit with drawing our attention back to the lump on Kole's chest in the days preceding his diagnosis, has been working night and day to get a charity fund started for Kole, and it has paid off!!! We are happy to announce that we have a formal, lawful charity fund set up in Kole's name through COMMERCE BANK. It is called the KOLEBEAR FUND, and anyone wishing to donate may do so at any branch of Commerce Bank.  Also, if you wish to donate and can't make it to the bank, William will come to you.  He is working tirelessly on getting posters and flyers and donation cans set up to pass around the community. Another exciting event today was that we got asked to speak at a giant Ronald McDonald House gathering which was held earlier this morning. Regional McDonald's branch owner/operators gathered today to present the Ronald McDonald House with a check for over $60,000 dollars to help expand the house, and we got to be part of it by getting up and telling our unique story. So many wonderful things are happening, I am at a loss for words and know that the hand of God truly is upon us. Thank you all for everything you've done and are doing and we love you and God bless you all!

Kole just isn't himself. It is hard for us to see him in this sort of deteriorated state. It's like he has regressed. The nurse assured me this is just because he has been laying around in intensive care for a week, but I don't know. It's like someone reached in and stole my son's personality/soul right out of him. He has developed a sort of nervous shakiness about him, his hands don't stay still, they just keep picking at everything. Part of this, I'm sure, is boredom, and some is sleepiness, but part of me is afraid it is something worse. I don't know, we are all so sleepy I am afraid we may be neurotic. We try to be strong for Kole but can't help crying behind closed doors. We went for a drive this afternoon while Kole napped and found a batting cage, and we hit a few. I wasn't into it at first but then found it therapeutic. That's worn off now though, back to reality. I miss my family and friends and the regularity of my old way of life.

I can't wait to see you all tomorrow who are visiting. Thank you for your love and prayers, whether near or far. We appreciate all your correspondence."

Today I worked a bit more on Koles face and hair, shading, adjusting tones.  Also more slow work on spindles and a bit of shading on his shirt and hand.  I had hoped to share a Thanksgiving photo of Kole and a special memory with everyone on my Thanksgiving blog post but Renee was having some technical issues.  Eventually we will get to that part too, as often as Renee shares the memories with me and allows me to share with you.  Many times Renee made multiple updates in one day and those are the paragraph breaks.  Seems fitting to share the entire day with you rather than break up the updates over a span of days.  And I love highlighting how appreciative Renee is for visitors and supporters  - you just never know what a few kind words, friendly gestures, home cooked meals and/or smiling visitors can do for people.  Be love, spread love.