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.

Dearly Departed Drawings ~ Kole {day 332}

June 16, 2008 

"When we arrived at the hospital this morning, the nurse said she had some interesting news. Kole figured out that if he scootched himself forward, he could reach back and grab his tubes, and I'll-be-darned if he didn't yank out his own feeding tube. I had to laugh, but slightly concerned because they had it running straight into his intestines....I thought, this can't be good. But he's fine, and actually he has starting drinking Pedialyte from a sippy cup this morning. One sip at a time. He may be able to try to eat some soft foods today also. They removed his arterial line today, but still haven't been able to hold him. Also they took out his catheter so we are back to diapers. They are leaving the chest tube in because his lung is still draining. They are at this moment, giving Kole a breathing treatment, an xray, and another echocardiogram. It looks like a parade going out the PICU door. But they want to do these tests before he is moved, he is moving out of PICU and down to hemonc in the next hour or two. Finally we will have our own room. I will let everyone know exactly where we end up as soon as I know for sure. Thank you for all your prayers, things are slowly looking up and we appreciate all the love we have been shown. Kole thanks you all, and we look forward to seeing our Monday visitors.

Breathing treatments are going well, xray came out great. Won't get the results of echo until tomorrow, but they honestly don't expect much change this soon. They said because this is a muscular tumor, that it won't reduce in just days, but soon enough there will be some lung and heart relief. We are finally out of the PICU!! Great news. This means they aren't concerned enough about his vitals to keep him in constant check. We are now in hemonc. It is more private and we have our own fridge and bathroom. Kole is doing quite well considering all the chemo they've pumped into him over the last two days. He can't sit up or quite hold himself properly, very weak. His voice is starting to come back, though. He is talking, but not much. He sounds very quiet and squeaky. He did drink almost an entire sippy cup of Pedialyte/apple juice mix. And he also had some yummy homemade applesauce, but he did spit some up. They said this is normal, as he will probably feel pretty nauseous for a few days. But we are happy he actually ate. He is watching Care Bears right now in his new bed with his daddy, and seems quite comfortable. Today seemed to be a lot more difficult for me for some reason, its almost like the tables have turned and all this week I have been really strong while Kole wasn't doing well at all, and now that he is progressing, I have seemed to emotionally regress. I think the past week has caught up to me, including the sorrow I felt yesterday as I spent my first Father's day without my dad.

Thank you all for being there for me, especially today's visitors who, without realizing it, 

picked me up when I would have fallen. I love you all."

Dearly Departed Drawings ~ Kole {day 331}

Hair today and started shading spindles.  Today I remember years past of Thanksgivings with my fathers side of the family.  Meeting at Grandma and Grandpas house with ALL of the family.  Cousins, uncles, aunts all arriving around noon and feasting about 1pm or 2pm.  Quality family time following the feast alongside naps and football.  I remember platters of cookies, simmering gluhwein on the stove and a big bird roasting in the oven.  Sides of sweet potato casserole, cranberry sauce, cranberry relish, creamed corn, stuffing, peas, mashed potatoes and gravy of course.  When us cousins were younger we spent lots of time in the basement "Bank" - yep, we pretended we all worked in a bank (with a few customers of course)  we had fake money, bank stamps, cash registers, phones, calculators, lots of used lottery tickets and bank deposit slips.  It was a blast.  There are nine total cousins out of three sets of aunts and uncles - there was never a dull moment.  Since those days  both aunt and uncle Brubaker are in heaven and Grandma and Grandpa as well.  Both couples are on my to-do list for a portrait.  I thought till this day I would still be having Thanksgivings with my family in that house.  The times they are a changing....

Dearly Departed Drawings ~ Kole {day 330}

June 15, 2008

"We just want to thank God today, Father's day, for blessing our lives with Kole. 

Kole had a great night last night and all of his CPAPs (where they take him off the ventilator for an hour or two) are going well. The doctor decided to take him off the sedation this morning, which is AWESOME news. This means they are ready for Kole to breathe on his own. The x-ray he had this morning didn't show much change, so the tumor hasn't gone down much yet, but his first round of chemo actually isn't done yet, it takes 24 hours, so it should be done in a few hours. They said as soon as the tumor starts to shrink, the left lung shouldn't be partially collapsed anymore. Right now they asked us to leave the room, because they are taking Kole off the ventilator, praise God. Worst case scenario, he will have to get the breathing tube put back in. If he does well, though, he will actually get moved out of PICU (Praise God) and down into the hemonc ward, a "real room". Now that he is alert, he is really confused and fighting to get up. He was crying to us earlier, and we feel so bad, because we figure he is wondering why we don't pick him up and help him. He is restrained at this time, with a giant "airbox" over him filled with oxygen. We will keep you updated to any further changes.

Thank you from the bottom of our hearts, your undying support and 

messages help us get through each minute.

Kole is doing very well being off the ventilator. All of his vitals are strong without any help whatsoever. We asked when we will be able to hold him, just getting thisclose to him and not being able to pick him up is killing me. They said as soon as his arterial line is out, which will be by tomorrow hopefully. His catheter should come out this evening, and we will go back to diapers! The doctor said things look good, and he should soon be downgraded, either back to the intermediate care unit or straight over to the hemonc ward, depending upon how hemonc feels about him still having the chest tube in to drain his lung. They are tripling-up on his chemo off the bat, they started with a 24 hr drip yesterday, which he finished, then they hung another 24 hr drip today. Also they gave an IV chemo therapy, and will finish with a third at some point. Then he shouldn't get any more chemo for at least 10 days. They said it will be a couple weeks till we can possibly bring him home, and then we will have to commute to return for therapies, and 3 or 4 months till the tumor is reduced to the right size for removal. For the long haul, it looks like about a year to a year and a half of total treatment. Thank you for all of your prayers, messages, and support. Kole is calling for ma-ma.

Well things are still pretty good. He is still in the PICU, catheter is still in (frown), chest tube is still in (frown), and arterial line is still in (frown), but he is mostly alert and trying to communicate with us if not for the terrible sore, raspy throat he has due to the ventilator irritation. They want to observe him overnight and will decide tomorrow I guess if he can be moved to PIMCU or hemonc. I didn't see the doctor all evening and I think he is the one who makes the call. They just had to give him something to calm him down a few minutes ago because he was getting kind of rowdy. When he does that, his heart rate goes sky-high and his blood saturation drops, so they want him as calm as possible. We tried to go out for a fathers day meal, but found it hard to conversate or have a good time. We are hoping that they will give Kole some more nourishment soon, it seems so long in between times he is allowed to eat. They took him off his blood pressure medication this evening, which is good. Thank you for all your prayers and support.

It was REALLY wonderful to see all of you who came to visit today and

thank you immensely for everything. "

Removed the grid today and worked upside down for a bit, while I like the constraints of the grid to improve accuracy it also gets in the way of my eye.  Hoping to have a surprise for everyone  following Koles story on the blog tomorrow.  In our house my girls are about to awake from nap and I have a Christmas craft ready for them.  Sometimes we take our children for granted, we think we have time - but what if we don't?

Dearly Departed Drawings ~ Kole {day 329}

June 14, 2008
"This morning our phone rang at the RMH and we were told to hurry over, because we have a diagnosis officially. We had to hurry up and wait and it was killing us (heart attack practically). Finally, a new oncologist, showed up and she told us Kole has RHABDOMYOSARCOMA, which is a soft tissue cancer that originates from muscle. This was one of the three that the oncologist believed he had it narrowed down to even before the official diagnosis. They believe it originated in Kole's chest muscle behind the ribcage. They said that because of the size of the tumor, that it is in advanced stage. It has not spread to any other area of his body, however, at least no test that they have done so far suggests so. The plan of attack, chemotherapy which they are starting in about an hour. They are mainly concerned with reducing the size of the tumor as fast as possible in order to give relief to his liver, lungs, airway, and heart. The goal is to get him off the ventilator and chest tube as quickly as possible so that he can be moved out of the PICU and into a less intensive area up here on the seventh floor. They said that this is a pretty rare sarcoma, and that although 20% of all childhood cancers are sarcomas, that this particular type only affects about 250 children a year in the US, out of 12,000 children who develop cancer each year.

We always knew Kole was special, and now he is even more special. 

They said it is really too early for prognosis, although they expect to have the tumor shrunken enough in about 3 months to begin to think about surgery to remove it. We should still be here in the PICU for another couple weeks. Please continue to pray for us, as I do believe they are being answered. They are very optimistic for us here. Right now we need prayer that the tumor will respond well to the chemo. Thank you for all of your love and support. For visitors, please note that now that he is starting the chemo, that he will be vulnerable to infection, and it is extremely important that no one is sick. I will keep updating as I can, right now I want to go back and be with him."


Today I nearly finished up the outlines of the spindles and background.  I still have some more lines to get on the paper before I remove the grid and really get to work.  This portrait will spill over into the New Year, seems fitting for Kole.  This is the worst stage in my humble opinion for the world to see my unfinished work.  I cringe at the harsh uneven lines and my OCD is wanting to fix it all and hide it from the world until completion.  I see the blog is getting amazing attention for this amazing little boy and his story.

"It's really nice that someone wants to express him. besides me."

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."

Dearly Departed Drawings ~ Kole {day 326}

June 11, 2008  11:14PM
"Kole was struggling this evening. He never quite came out of that "anesthesia" hangover. His heart was racy and the oncologist here said he just needed a break since his heart and lungs have been on overdrive. They finally officially moved him to the PICU. He has been incubated and is on a breathing machine temporarily to reduce his struggle. He also has a chest tube in to drain the left lung. Right lung looks great. They are starting steroids to see if there is any affect on the tumor, to possibly shrink it. If the tumor is a lymphoma then it should start to shrink. If not, the steroids will just help the swelling/breathing. They ran an arterial line to check blood pressure and so that they can keep taking blood to test. He is on albuteral for breathing and alopurinal for reducing uric acid. They have him totally sedated and vitals look good."

June 12, 2008
"This morning we were told that overnight some fluid had accumulated in the right lung, the better of the two, which did not make us happy. However, it is now gone, so the left side, again, is the main concern. Today they had to do a small blood transfusion due to low red blood cell count/hemoglobin. They took him off the ventilator and he was doing fine breathing on his own. They lowered his sedation level from 4 to 3, which pretty much just means he is a bit more aware. However, we are not sure if this is a good thing, because when he is with-it enough to know we're here, tears stream down his cheeks and he tries to move toward us but can't. The oncologist said our biopsy results are not in yet, however, should be by tomorrow. Kole is his main priority, as he said this case is pretty much unlike one he has ever seen. Right now they are pretty certain it is cancer. What type is still up in the air, yesterday he was leaning toward lymphoma which is why he began the steroids, but today he seems to be leaning more toward sarcoma, which is a tumor of the soft tissue/bone family. They have Kole sedated right now and are at this very moment extracting bone marrow and also small pieces of actual bone to test to see if this has spread to other areas of his body. We pray not. The tumor alone is enough to have to deal with. In either case, we are garnering a plan of attack and they just want to know all they can so they keep doing tests while he is asleep. The more we know, the better the fight. Regardless of what this tumor is, it is too big to be taken out right now. They will have to shrink it first, and the word radiation was finally mentioned last evening by the PICU doctor.

Kole had another blood transfusion this afternoon and responded really well. The bone marrow aspiration/bone sample went very well too. They are keeping him as comfortable as they can.

Anyone who knows Kole well knows how strong and persistent he is

and the nursing staff here is getting a taste, too.  The anesthesia they administer to him is to keep him out for about an hour, but the little tiger keeps rousing after about half an hour, so they finally had to give him something a little stronger so he doesn't want to pull all his portals out. This did drop his blood pressure a little low, they were worried for a few minutes, but it came back up and is now normal. He also ran a fever earlier but responded well to the Tylenol. At this time they are putting in a feeding tube which will be fed into his intestines, prohibiting any regurgitation. He hasn't eaten since Tuesday morning so we were both really adamant about wanting him to have some nourishment. Before he was sedated, he kept asking for juice and chips. They are going to come and get us when they are finished putting the line in.

Tonight we gently bathed Kole and got him lotioned-up. He smells yummy and the nurses are all admiring him, especially his long lashes. He also got his teeth brushed. They brought an xray machine in earlier this evening which showed the feeding tube in place properly as well as the chest tube which drains the left lung. His vitals are all wonderful. They took him off the ventilator again and he did well, even better than this morning, so we are thinking the antibiotic/lung drain combo is working well. He is being fed right now. They removed the dressings from his bone marrow aspiration and it looks good. We were in there earlier giving Kole some exercise and just moving him around a bit. I am getting really good at manipulating all those tubes and lines. It has been a very long day, but we are happy we had several visitors! Thank you for your generosity of the gifts you've brought to us, it means the world to us and we love you all. We just got done reading Kole his night-night book, Snuggle Bunnies, and are about to head down the road to the motel."


Today I worked more on the crib spindles, I'm convinced they hate me.  Shaded a bit more on Koles face and a few wisps of hair.  I am saving the real work on his face after the grid comes off and I can work upside down.  The main goal is to get lines on the paper and remove the grid.  The grid is only to ensure proper proportions - so much easier to work in small squares than in one huge open sheet of paper.  Grids are also awesome to intentionally skew and distort images for fun, I drew the little boy off a U2 album cover in high school.  I will need to dig it out and snap a picture for the blog,

What this beautiful family had to go through truly captivates me.  The fact that his mother diligently journaled every day, many times several times a day.  I won't be sharing the most intimate details but I want to show you how brave and strong Kole is at two years old.  I don't know about you but I've never had a bone marrow aspiration and I'm 34 years old.   I imagine some of my blog readers may have faced hospital time with their children.  Love to you all.

Happening now

Just now I was looking through my blog analytics and I have 7777 page views.

I have not yet seen in my lifetime a cluster of sevens in this way.  1111, 222, 444 but not sevens.  If I believe everything has a reason then I find the following explanation.  I find it affirming and comforting.

Upon further inspection of repeating sevens I have discovered the number 7 resonates with the ‘Collective Consciousness’, the inner-self, life purpose, the specialist, natural healer, inner-strength, intuition and inner-wisdom, an understanding of others,  persistence of purpose, perfection, the path of solitude, spiritual awareness and awakening, spiritual enlightenment, divine life purpose and good fortune.


References of Interest:

Angel Numbers

Moondaughter

Numerology

Dearly Departed Drawings ~ Kole {day 325}

"Before long, a parade of people in white coats from the radiology department walked in to our room with somber faces. My mom was there. Sitting in a chair. I was holding Kole over my shoulder and just walking around snuggling him. The doctor spoke first. He claimed they found a mass in my sons chest via CT. My mom fell out of her chair. I clutched Kole tighter. I asked if it was big. He said yes. I asked what was going to happen. He told me the hospital didn't have the proper treatment for Kole and that he would have to go to Hershey Children's Hospital. Our regional pediatric oncology specialists. That meant he thought my sons gigantic tumor was cancer. The doctors walked out one by one. A man with curly light brown hair came over to me and told me how sorry he was. I went numb as I felt the pieces of understanding falling into place. The helicopter arrived within 5-10 minutes. I don't remember feeling anything but Kole, wrapped in my arms.

And as the pilot medic took him from me all I could think about was 

holding him again and I had to rush there to be with him."

June 11, 2008

Kole's chopper ride to HMC went well. Kole has a large tumor in his thoracic/abdomen. It has compromised his breathing slightly, but he isn't severe enough to be in the Pediatric Intensive Care Unit yet, so we are in the intermediate area. It is also causing his airway to be shifted, but not closed, which is good. There is also extra fluid around his heart, although the echo-cardiogram he had this morning showed strong pumping action and not quite as much fluid as originally thought. He has had many tests so far and we have only been here 16 hrs. A biopsy of the mass was taken this morning. Also, while he was under anesthesia, we consented to having his left lung drained and a specimen was also taken to evaluate this fluid. They also needed our consent to put a portal/IV in his neck area as the one in his arm was being compromised by movement. He also has one in his foot. Everything went well today, as well as it could. Kole is slightly uncomfortable but managing the whole experience quite well. We will have an answer as to what this "thing" is in his chest tomorrow, and then a plan of action as to how we will deal with it. Please pray this evening for us, as that is all we can ask or hope for right now! Speedy diagnosis, full recovery.

Today in beautiful bright sunlight I managed to get more basic lines down and a better grasp on the crib spindles.  They are going to be the death of me.  Clearly I need more work on repeated patterns as nearly every portrait has had a repeating pattern as a large part of the whole picture.  His story is so important, his life is so important.  He brought love, joy and happiness to those who knew him and tears when he left.  His life was meaningful, it had a purpose.  

Dearly Departed Drawings ~ Kole {day 324} BONUS

I worked for over an hour last night.  I also fell in love with this photo of him.  I can see why his mother chose this one, I see it in his eyes, tousled morning hair and his beginnings of a large grin. I am enthralled with his story and the survival of his mother through his medical journey.


"Then he developed a low-grade fever. No matter what I did, I couldn't get it to go down. He seemed sweaty and his breathing seemed labored. He was very clingy and I could tell he didn't feel well. He whimpered and whined which he never did. He was diagnosed with pneumonia on a Friday and got worse over the weekend. His skin was pallid, his lips were blue, and he could barely sit up by himself. X-rays ordered were inconclusive. By Monday, after a brief but chaotic series of tests at the pediatricians office, he was rushed by ambulance to the York Hospital and put on oxygen immediately. They pushed me around on a gurney for hours from room to room, test to test, while I held him in between my legs on my chest. More X-ray. Ct scans. Blood work. The whole mess. Finally we waited. Before long, a parade of people in white coats from the radiology department walked in to our room with somber faces."

As the photo of Kole emerges I will be sharing parts of his story through his mothers heart as she allows us a glimpse into her private hell.  Every parents worst nightmare I imagine.  His medical journey started at age two, an age where understanding is only beginning.  How do you explain the need for x-rays, CT scans, drawing blood, remaining still to a toddler?  How as a parent do you remain strong and calm as your child undergoes testing for an unseen, unknown problem?

Dearly Departed Drawings ~ Kole {day 324}

This is the last portrait drawing installment of my 365 days of Drawing New Years resolution.  I still have four more portraits I will be completing and blogging about in between life, children, tie dye and custom work for Dearly Departed Drawings and custom Tshirt Quilts (I have a feeling these are going to be a hit).  This year has been filled with tremendous meaning, full of loved ones, memories, friends, family and even strangers.  Not only have I been practicing and honing my drawing skills but uncovering these amazing people that once walked our earth.  They are loved, missed, not forgotten.  All the souls touched me in some way and inspired me to create from the heart.

Leigh is the sister I never had, the addiction I know of all too well.

Houd is the dear friend that I thought I had more time with, the suicidal struggle I experienced long ago.

Violet was the baby I did not lose but mourn the thought.  I admire the loving family that surrounds her, the constant outpouring of love they give her and her memory.

Neil is the sibling that reminds me of the relationship I crave with my own brother.  Accidental death is a fear of my own.

Kole is the finale, the light in the darkness.  I don't know Kole, I don't know his mother.  I first heard about Kole in 2008 from a co-worker who asked me to send prayers, positive thoughts, good vibes his way.  September of this year, 2014, I start seeing a little boy popping up in my Facebook news feed.  The profile name looks vaguely familiar but I can't place it, she isn't on my friends list.  After Facebook continues to show me his photos in my news feed for two weeks - it hits me.  It is Kole, the little boy I heard about and prayed for six years ago.

"I saw a small lump on his right rib cage. It bothered me. I asked about it at his checkup in April 2008 and was told it was nothing to be worried about, a "sternum abnormality". I also told them his eating wasn't as hearty and his sleep patterns were disrupted and out of sorts. I was told these things were all normal and he was a healthy growing boy hitting all his milestones.  Then he developed a low-grade fever."  

"He was a bright light from the moment I found out I had a baby inside me.
He saved my life."

 ~ Renee

I decided to start Kole's portrait today, I meant to start him earlier and then decided to wait a little longer.  Then today the overwhelming need to get him onto paper occurred and here we are.  I am going to let his little light shine bright.  He is loved, he is missed, he is not forgotten.  My drawing grid is drawn and the paper marked.  The intense urges to draw are powerful and I imagine I might find myself under the lamp with pencils and Kole tonight.