Monday, November 24, 2014

Dearly Departed Drawings ~ Kole {day 327}

June 13, 2008
"I sat up reading eight pages of information on the Childrens Oncology Group, and we decided to consent to an extra bone marrow aspiration which will be used for research, and hopefully help other children.   As of right now the generosity of everyone is really awesome, we have lots of food to eat now, thank you so much! Thank you to everyone who is supporting us by collecting money as well, we have received some of these donations already and words cannot express our everlasting gratitude to all of you. We are really floored by all the support and prayers. When we arrived here this morning a new nurse was on and said that everything went very well over night. His blood pressure dropped again, but is back to normal now. Both lungs look slightly better than they did yesterday, but still decreased on the left side. A music therapist is the room with Kole right now singing and playing the guitar, the resources here are mindblowing. He is on sedation level 3, so hopefully some of the music will make it into his little ears....A man from radiology just came and injected a dye into Kole because he is going to have a bone scan today....But we do have some good news, the bone marrow biopsy came back NEGATIVE and they are doing the bone scan just as a double-check and also so if they need to compare any future bone scans that might need to be done to the original. They sure cover their bases here. Kole will have to be moved downstairs to do the actual scan. I hate when they move him because they have to take him off the ventilator and manually pump his oxygen and that freaks me out. The oncologist has not showed up yet to say whether or not they have an official diagnosis. When they do, we were told to expect to start chemotherapy relatively quickly. If all ducks get in row, this could be as soon as this evening. His heart and lungs are top priority, and reducing the size of this tumor is of main concern to help these organs get better. Right now the tumor is approx 10 cms, which isn't much to an adult, but considering its location and his size, it is taking up approx 35-40% of his chest cavity. It is mainly on the right side, they think it may originate in the diaphragm area, but aren't sure yet. It extends upward behind the ribcage, between his right lung and liver, and is pushing on his liver, although liver an kidney function are still good. From there it extends into the middle behind his breastplate and is pushing his esophagus/trachea to the side a bit and is pushing on his heart from underneath. Finally, it seems to end on the left side, right between the heart and top of left lung, which is causing all the problems with the left lung. From the exterior of his body, you would never even know it was there, except for a small protrusion at sternum area. Which is why we wanted the xrays done in the first place last Friday. They told me this came back normal, which is confusing the doctors up here greatly. There is a lot of anger issues I am facing because I really had to fight to get my pediatrician to listen to me. They weren't even going to send him to the hospital.

I am glad, for once in my life, I asserted myself and fought. 
Don't care what they think about me, I am glad I did.

Kole's bone scan is finished and they just brought him back up to his room. (whew) This afternoon they plan to take him off the ventilator and allow his lungs to breathe on their own again. They said probably two times today they will do this and this will strengthen him. He is getting more nourishment also and hopefully we will have some sort of movement. The oncologist, just came in and told us he needed to meet with us and my heart just about exploded with anxiety. The results are still not in, but he believes in his mind that it may be one of three different kinds of tumors, all treatable. We are waiting for the green flag to go on treatment, but can do nothing until we know for sure except keep Kole stable. He said the top two in his mind are both types of sarcomas, the third being a teratoma. If it is one of the first two, treatment is about the same. I am a bit more relaxed knowing that we are getting closer to some certainty. Thank you all for your beautiful prayers and donations, we love you and appreciate your gratitude more than we could ever explain to you.

Kole is finishing up the test-run they are giving him breathing on his own, and passed with flying colors. He had some dry mucous around his nostrils which I tried to clean up, and everyone knows how much he loves it when you mess with his face (sarcasm), and he starting moving and trying to resist, so that just goes to show you my stubborn little strong boy is still in there! Also, the left lung isn't putting out as much fluid volume, so that's great, too. Thanks for all your love and prayers and messages. And continue to pray for a speedy diagnosis and complete recovery."

Still trying to put the spindles and the rest of the background on the paper.  Shaded a bit more on Koles face - couldn't resist.  I worked for several hours late into the night.  I get so lost in my drawings, focused on beautiful eyes, tousled hair and smiles.  Two days ago I was having an immense anxiety struggle about whether or not I was doing more good than harm.  Drawing portraits and digging up trauma from the past.  Then something profound happened.  And then Koles mother assured me that while this is difficult, it is also uplifting and a good type of stirring.  I think we all recognize the trauma and difficulty of a child who is subjected to the horrors of cancer, many times we read the cancer survivors stories but not the ones who God decided were too beautiful for our Earth.  I can't even believe the amount of testing, prodding, treatment faced in a short time and when I read his story I couldn't stop reading it until I was finished - his mother should write a book. 

I have three family members that all passed from various types of cancer, all of them are beautiful souls and I will be drawing all of them in the future.  I grieve for Kole and his mother.  Kole is an only child. 

"It's like I am watching him spring to life. Seriously.....his face. When I saw it. 
You could stop the drawing right there. stopped me dead in my tracks."

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