Dearly Departed Drawings ~ Kole {day 336}

June 18, 2008 

"Kole is doing better today than yesterday, although he still seems quite weak, and can't sit up on his own yet. He ate a very good breakfast and kept everything down. He enjoys being propped up, especially for his "beating" treatments (where I beat his chest front and back with a special instrument for lung drainage). I finally complained to the point where they brought me my own rocking chair this morning! Wow, what a difference. He sat in my lap, he cuddled, he ate Goldfish, and fell asleep. Beautiful. The fever that we were worried about yesterday didn't come back, excellent. This morning he had anouther xray and they found the left lung to be improving a little more every day. A nurse came in a little while ago and clamped the chest tube shut, they are testing his ability without it. If he does well, it will be gone tomorrow. Also, we were told that Kole is on first care tomorrow, meaning he is the priority on the list of surgery. They are planning on doing the surgery to place the permanent central line which will be the portal for his treatment from here on out. I am not happy about his having to go through anesthesia again, plus they have to put the breathing tube back in while they operate, and he just now finally seems to be able to get his voice back from when it was in before (sigh). His poor throat and mouth are so sore, and he just seems to be more alert today, and now they have to knock him back out. It just doesn't seem fair, but I know they have to do it to properly care for him down the road. The staff here is so impressed with Kole's progress over the last week, they are considering sending us home before his next chemo and then we would just have to come back for it. I think they said there would be a 10 day gap between the first two treatments, and he finished the first two days ago. We are concerned that we are not ready to go home, I feel so uneducated about how to treat him at home and all the different medication and whew it is a lot to absorb. We have to get masks and gloves and the whole nine yards. For those of you who plan on visiting us now or after we go home, please note that it is vital that you are not sick and you must sanitize yourself. We may even make you wear a mask, please don't be offended, this is all new to us and we are just freaked out. Our prayers are being answered every minute, every day, one at a time. I would like to tell all of you who are leaving messages and emailing me that your encouragement, especially through the low points, really helps me through.

You make me cry with your beautiful words and prayers and responses and 

I love you all so much. So does Kole.

This evening I am thoroughly exhausted and I can't remember what day of the week it is. I know I haven't been home in over a week, but feels more like a month. A majority of the day I just stayed with Kole and helped him sit up and tried to exercise his legs and arms and keep him from boredom. He is at a point of understanding now, when people even walk past the door to our room, he cringes and cries for me. He thinks everyone is out to get him, and for the most part, he's right. We can't go 10 minutes without another xray, breathing treatment, question and answer session, or poking and prodding. I know it's all for a reason, but it breaks my heart to hear him cry in fear. I had a small breakdown this afternoon, and felt better afterwards. A woman, a nurse coordinator, came to speak with me about the regimen we will be going through once we can continue home treatment. To say I feel overwhelmed is an understatement. I do know that God won't give me more than I can handle, and I pray on that.  The oncologist came in this evening and said that Kole does have a bacterial infection that may delay his surgery tomorrow morning. It showed up in urine and blood, and they are running IV antibiotics. Assuming he doesn't fever too much, they are still planning on doing the surgery but may hold off for a day or so. The big news is that he said he is thoroughly astounded/impressed/surprised at the turn around our little Kole has made. He can't believe how far he has come in just the few days he has been out of intensive care. Today's xray showed almost no fluid in the left lung, amazing. AND, it is no longer collapsed. They decided after much debate to go ahead and remove the chest tube!!

It feels soooooo good to be able to pick Kole up out of bed, words can't even say how it feels to feel his little fingers pulling at my hair with his arms clenched tightly behind my neck. 

Also he had a huge appetite this evening and PIGGED OUT. If tomorrow's surgery goes as planned, and Kole seems stable for a day or two, they are talking about us going home by Sunday, a week before they thought we would even be considering it. I can only thank God for hearing the thousands of prayers. I know His hand is healing my son. We won't be home long, though, Kole is due for his next chemo by the 30th. We are still taking things day by day, one step at a time, but relishing in each little victory. I am so blown away by the messages I have been receiving on this carepage. I want to thank those of you who have never even met my son and are praying so hard for him/us. We have been through a whirlwind in the past 8 days, from thinking we were dealing with just a fever/ear infection and finding out our 19 month old has stage 4 cancer, to every little setback, to the miracle of today, and everything in between. Thank God and thank every person who is a part of this giant prayer chain that all started with the miracle of this special little boy. I am truly speechless."



Eight days.  All of this happened to this beautiful family only eight days into their journey.  Seems like so much in so little time.  I managed to find some time today to sit down and gaze at this spunky, beautiful little boy.  I've been working on his shirt, the crib spindles and some overall shading here and there.  It's Christmas time and the decorating has commenced in our home.  We have a second birthday coming up this month for our littlest princess and a few orders to complete before Christmas.  We have been fitting in some holiday crafting and soon cookie baking.

Finally going to admit I have a little touch of the blues going on with myself.  Thanksgiving and Christmas are especially hard on me, thinking of memories with my family.  Mourning the loss of our passed on family and friends.  Thinking of my cousins who lost both their parents as well as our friends that lost their spouses or children.  So much weighs on my mind and heart this year and every year.  Doing special things for others and being able to spread love is always uplifting for me.  Hoping to get outside in nature for a few hours alone before too long and recharge myself.