Koles Progress

I decided Koles portrait is nearly complete.  Not posting any more updates until the reveal day.

Dearly Departed Drawings ~ Kole {day 399}

Nearly there!  Cleaning up lines and smoothing out.  Can you feel the anticipation?  We've come a long way since day one of this portrait.

Dearly Departed Drawings ~ Kole {day 397}

I hear the giggles.  Closer to completion than before.

Dearly Departed Drawings ~ Kole {day 396}

Touch ups!  Here, there, everywhere!

Dearly Departed Drawings ~ Kole {day 395}

Almost finished!!

Dearly Departed Drawings ~ Kole {day 394}

Today I darkened the crib rails, I think they are the proper tone compared to the spindles.  I worked on the wall hanging and adjusted a few small shadows on Koles face.  Overall I am satisfied with everything but there a few things here and there that bother me enough to keep at it.  Also blending pencil strokes for a smoother look and sharpening outlines here and there.

Today I had the chance to meet the most beautiful baby girl, Addyson.  She was a still birth at 30 weeks this past May - May 28th, 2014.  Just days after my oldest little girls 3rd birthday.   Her mother invited me over for a playdate today, we met at MOPS over a year ago.  Addysons mother is such a strong, patient, loving, kind and generous person.  I was overwhelmed with emotion when she asked me to draw Addyson.  Of course I will draw her beautiful soul, gone from our earth too soon.  As we looked at the photos from Addysons birth day I could see the emotion on everyones faces and feel it in my own heart.  I was also able to view photos of the day they laid her to rest, taken by very talented photographer friends I also met through MOPS (Mother of Preschoolers).  It was a breathtaking way to honor her brief but beautiful life.  As I poured through her photos and soaked up the images, two stood out in my midst.  Brought tears to my eyes.  The grief my friend was wearing and how her oldest daughter was comforting her mother kneeling graveside - caught in a photo.  The second photo was nearly in succession of the first, showing her father and brother standing behind them (my friend did not know until she saw the photo) who were also painted with grief and wiping tears.  While sad, the display of emotion is overwhelming and beautiful at the same time.  I was so thankful she shared all those very private photos with me.  There is something to be said about shared grief, so sad but so beautiful.  I look forward to drawing dear little Addyson in the future for her family. 

(Little Addyson won't be featured here but once she is complete you will be able to sneak a peek on the shop page)

Dearly Departed Drawings ~ Kole {day 393}

Using a 9B (soft, dark pencil) I went over the spindles, Koles hair, eyes darkening them further.  Still plenty of work to do.

Dearly Departed Drawings ~ Kole {day 392}

Sharpened Koles shirt today, darkened the bedding around the basket and small things that were bothering me here and there.  Some days the changes I make will be so minor it may be difficult to tell I did anything at all.  I still see things I want to change and adjust.  The wall hanging upper left corner still needs to be filled in and tones fixed.  I still want to darken Koles hair more and the crib too.  I have him in our living room uncovered everyday now, I love this part.  Soon he will be hanging on my wall with the rest of them and the original with his mother.

After I complete this portrait I will be taking some time off and preparing a Storenvy shop which won't charge me fees and I like that for these drawings.  I will still be working here on the blog doing what I did all year for the departed that seek me out, but I will also be doing commissioned work too.  I will post a custom portrait listing in the Dear Departed Drawings shop one at a time.  As I finish each portrait I will make another listing for a custom portrait.  Commissioned pieces won't be featured on the blog.  There is plenty of time left in my life to provide everyone that has already asked me if I would draw a commissioned portrait for them and more!  I really look forward to working with all of you and your loved ones.  I am so happy to being using my talent in this deep and meaningful way.

Dearly Departed Drawings ~ Kole {day 390}

Just entered the sit, stare and make minor adjustments stage.  I still have some darkening to do on the wall hanging and the portion of bedding around the basket.  Today I worked on darkening his hair, making changes here and there to his cheeks and eyes.  More adjustments need made, but today I decided I'd like to look at Kole unveiled in the living room.  This is an important part of my process.  I will thoroughly compare the photo to the drawing and make changes. 


I am thrilled with my progress and the level of detail.

Dearly Departed Drawings ~ Kole {day 387}

The wall hanging is my main focus at this point, I am making small adjustments here and there as I see them. 

Dearly Departed Drawings ~ Kole {day 386}

Darkening tones here and there and working on the wall hanging.  Adjusting a few things on Koles face, a few spots lightening shadows and a few spots darkening. I am super excited this portrait will be ready for gifting for Koles mamas birthday!!  What timing!!

Dearly Departed Drawings ~ Kole {day 385 bonus}

Bonus drawing time with Kole tonight.

Dearly Departed Drawings ~ Kole {day 385}

Keepin' on keepin' on.  Darkening shadows on the spindles and defining them.  Going back over areas and darkening and defining.  Defining and darkening.  Got totally lost in the portrait today and was surprised when the kids woke from naps.  Had one of those "where did the time go?" moments.   I hope Renee is proud of my work so far, I hope she recognizes her boy, I hope it brings her love and peace when she looks at this picture.  I'm still not done, but we are not far off.  Maybe I will be under the lamp tonight.  I almost was last night.  Last night Kole was running all over my mind.

Dearly Departed Drawings ~ Kole {day 384}

Still bringing up the tones to darker levels.  Slow and easy is the way to go.  Its much easier to darken than lighten something already too dark.  Worked on shadows, spindles, crib rails and bedding.  I also darkened Koles hair a bit.  Lots of outlining and shading work to adjust before the portrait is complete. 

Dearly Departed Drawings ~ Kole {day 383}

Still working on the crib and spindles today.  Darkening tones further.  Working, working, working!

Dearly Departed Drawings ~ Kole {day 382}

Today I worked on the spindles, I still see more work to do on them and the crib rails.  I still have details on the bedding to finish and tones to darken.  Not finished yet but the end is in sight.  I can almost hear his giggles.

Today I attended a Blessingway (another great Blessingway site).  A Blessingway was traditionally a Navajo ritual created to spiritually support and empower the new mother for her journey of birthing and motherhood.  In recent times, this beautiful ritual has been adapted as an alternative to Baby showers, where the focus tends to be more on the gifts and the baby, rather than on the mother and her experience.  This ceremony helps the woman to prepare herself for the birth, emotionally, spiritually and mentally, for the all important role of a new mother.  She feels "held" and supported by those she loves and respects - a great way to help her release any blockages she may be feeling and allow her to embrace what's to come.  Hearing other womens birth stories as you share around the circle can be surprising, exciting and heartwarming to hear.  A mother blessing can be very affirming, empowering and uplifting.  This is the explanation on the back of my invite.  I was very intrigued and luckily I was able to attend!

When we arrived the mother to be was receiving a henna tattoo being created on her pregnant belly. Then we as a group, first washed our hands in rose water (cleansing ourselves), then we sat in a circle.  We introduced ourselves, named our mothers lineage and each lit a candle.  We meditated together and sent positive, uplifting energy to the new mother. We also read aloud our wishes, poems and blessings to the mother and with a bead we had chosen, placed the bead on a necklace the mother would wear while she labors.  We also wove a web with hemp around each persons wrist, then cut between each person and we tied our string on the candle for the mother to take with her to the hospital.  Then we ended in prayer.  To end it we feasted together!

Everyone was asked to bring a offering from nature, I chose to make a dream catcher for the baby.  Each item from nature will be made into a mobile for the baby to hang in the nursery. 

Traditionally, Native Americans believed the night air was filled with good and bad dreams. The legend of the Dream Catcher is that it captures the bad Spirits and filters them. Protecting us from evil and letting through only the good dreams.   It is believed that each carefully woven web will catch bad spirit dreams in the web and disappear by perishing with the first light of the morning sun. The good spirit dreams will find their way to the center and float down the sacred feather.  Dream Catchers are believed to bless the "sleeping ones" with pleasant dreams, good luck, and harmony throughout their lives.

Dream catchers were given to newborns for good dreams. The larger sizes were hung in lodges, for all to have good dreams.  The dream catcher that you have received was made by me with your new baby in my thoughts, while sage was burning and a prayer said at each knot in the web.  Many prayers were made for health, happiness, love, growth, inspiration, honor, kindness and all things beautiful.  At the finish I saged the dream catcher and said prayers of protection and sweet dreams for your baby.  It is a sacred object.

All the parts of the dream catcher have meaning.  To begin, the web made of hemp represents the spider our brother of life for ever repairing the eternal web of life.  Thus weaving your life dreams and energy in the universe when you dream.  The grapevine ring represents the earth mother and the humble walk we do upon her.  The beads on the web are turquoise, stone of sky, stone of water, stone of blessings, good fortune, protection, good health and long life.  The feathers are Pheasant and symbolize balance, family, aspiration and protection.  In your Dream catcher, I have finalized the eye with turquoise again.  May your new baby have a happy, dreamful life with this dream catcher and good Karma.

Dearly Departed Drawings ~ Kole {day 379}

Getting better

Posted Mar 21, 2009

"Spring is here...yay! I am sensing a rebirth in the air....

My husband is at home now feeling pretty well today, he is out doing some laundry and I am sitting here at the apartment enjoying some more peace after I slept-in this morning. Knowing my husband was home and on his way to recovery really helped give me a solid night's sleep. Half an Ambien doesn't hurt either....

I confronted my fears head-on on Thursday, and made my way up to the seventh-floor at the medical center and was clobbered with familiar faces and love. Of course the first person I saw was Dr. Bob and he was happy to see me and asked if I was "okay?" (I must have had a petrified expression as I walked-off the elevator...). Then the nurses came up one by one it seemed, I know them all by name and they know me as "the short cute young-looking mom, you know, Kole's mom". And then I ran into Dr. Comito and we embraced in the middle of seven-west and cried together happy tears. I love her. Of course I saw Deana (Kole called her Dean - that was his nurse practitioner-crush). And I saw Teresa, the nurse we had on our first day at Hershey and our last day at Hershey. And I saw Heather and Collin - the other rhabdomyosarcoma family our new great friends, and kissed Collin on his beautiful bald head. I couldn't bring myself to walk any further down the hall than the nurses station, for it would bring me too close to "our room" where Kole spent his last 8 days.

I have come to find out that the Child Life organization up on the seventh floor is looking for volunteers, and I am thinking about volunteering. I always had such a gripe when Kole and I were inpatient and Karl was sick and I had no help some days, and I KNOW there is a need for this. So many pediatric cancer patients do not always have their parents there, as scary as that would be for them. Some families have jobs that dont allow them the luxury of being with their children in the hospital and some families have other children to be home with. It sucks for lack of a better way to put it. They need someone to ease their fears with a smile or hug, someone who understands the ins and outs of their treatments and symptoms, someone to hold them, rock them, hold their hand, play with them, read books to them, help them feel they aren't sick or different from the rest and give them a sense of normalcy. They need a mom who has been there!!! And the parents need someone they can trust to sit with their child while they eat, nap, shower, and do their laundry and errands. I have been praying on this. God is slowly granting me the bravery, mercy, and determination to face my anxious memories of the seventh-floor and to NOT let evil powers of fear hold me back from helping the kids that need it the most. That would mean evil wins once again. I once said I would never, ever be back to Hershey Medical Center. Just the ride to the hospital made me sick to my stomach. But there is such a great need.....a need that is stronger than my own personal fears which I intend to set aside so that I can be/fill-in that missing puzzle piece that I lived/experienced while I inhabited that place for 8 months. I am a need-fulfiller by personality, and of course have such a strong mothering instinct that is unused and unfocused....I need to love these children. Actively, not just by prayer.
Thanks again to those who are always there for us."


Working on crib spindles again and their shadows.  Doing other touch ups as I go along.  I was reminded today of the conversation I had with another mother this past weekend (it was a womens weekend away with friends) who was talking about the grief her children had when she lost her baby at 30 weeks.  Which reminded me of an acquaintances vision called HK Pinwheel Packs. They provide comfort packages to children who have suffered the death of a baby sibling from early miscarriage through the first year.  The creative vision is from a mother and her daughters.  A special way to honor their baby brother that didn't survive pregnancy and birth, Holden Keppel Galt.  Each pack that they gift to a grieving child contains a children's book about grief, pen and journal (for older children) or crayons and drawing pad (for younger children), a stuffed animal to cuddle, a pinwheel to play with or set at the sibling's grave or special place, and some information for parents.  You may request an HK Pinwheel Pack, please email hkpinwheelpacks@gmail.com.  

I think its a wonderful idea!!  While Kole did not have any siblings, I still felt it important to share this for other parents who might have grieving children.

Dearly Departed Drawings ~ Kole {day 378}

 

MANY THANKS

Posted Mar 19, 2009

"Alone, really alone, for the first time since.......I was pregnant maybe? Tonight feels a bit weird. My husaband is inpatient at Hershey (episode started Friday) and the apartment is as still as I have ever heard it. I came onto the Carepages (its been awhile) to see if anyone had written anything lately, and was just blown away by all the love. I had to read and reread all your messages to us, and I just sat here and cried and felt so thankful and loved. I just wanted to tell everybody that. And I also need to make a rather belated public announcement that, Yes, my cell phone IS broken and has been since we got back from our trip and Yes I am getting a new one just haven't yet, so in the meantime call my husbands cell or the house. Thanks and sorry for anyone who may have felt offended because I wasn't getting any of their messages. We were in our cave for a bit, anyways, it was pretty dark when we got back to PA, but we're coming back out into the light now and stretching our wings. So let's have lunch. We love everyone. God bless everyone. A special prayer to all our friends still in seven-west. We will never forget. Constant love. Constant bravery. The real heroes."

Spindle work today.  Darkening, giving wood grain and darkening shadows.

Dearly Departed Drawings ~ Kole {day 377}

A Time to Heal

February 26, 2009

"My husband and I took some time away this past month. After the hard year we endured, space and time was needed just to breathe and truly soak in what life threw at us this past year and what it means for us and where are we going from here............When your child has cancer you really just live minute to minute. Time seems to fade away into a myriad blur of white coats, beeping machines, glowing buttons in the night, screams, night sweats, heartache, emptiness, confusion, vulnerability, anger.........and it truly is a test just to hang on through every twist and turn, sometimes feeling that the worst has to be over, and then realizing a life without Kole is the worst, and that empty hole in our lives will be there every day to come and we will have to look it in the eye and just hang on. Hang on to what? No, who. We were fortunate enough to have had God with us every step of the way, who sent his son, Jesus Christ, to take away our sin, including all the burden we carry in our hearts over the pain our son endured and the death we faced, for He helps us carry it. And we feel so utterly blessed for our family and friends, who are to us as family, and are so deeply embedded in our hearts, right there with Kolebear.
All the fundraising that our communtiy did for us has just been mindblowing. We are so appreciative we cannot even begin to describe our thankfulness, and hope it inspires you to know that we, through you, have been able to extend help to those we've come across in our everyday lives who have needed it. And although we never got to take that one-last-family-vacation with our precious son, we did decide to go away for ourselves, for healing purposes, just the two of us. We spent 8 nights in San Diego and 7 nights in the San Francisco Bay area with family and friends, and then flew to Hawaii to spend 8 nights in a private beach house backed up against state conservation grounds on the most private end, of the oldest, most desolate island in the most secluded island chain in the world - Ha'ena, Kauai (Tunnels Beach). Everyone needs to come and see the island of Kauai at least once in their lives, get out your bucket lists. We got an immense amount of peace in this place, the clear turquoise waves seemingly taking your pain and love intermingles with the sloping majesty of the mountains, through the gentle island breezes, and into your heart and soul. Even in paradise, we cried our hearts out to the Lord I don't know how many times a day, and found it such a puzzle that we could be this inspired and loved by such an awesome God who created such an awesome world, and has given us such an awesome life and family by the grace of His hand, and yet has allowed so much grief and turmoil in our lives recently and what does this all mean......
After being away for 25 days I must say it is strange coming home. Back to the cold. Back to the pain. Back to Kole's room. Back to staring everything right in the face and not knowing what to do with it. I have to go and visit the doctor tonight for a follow up in the area of mental health. I hope you found this update insightful, I know so many people have been trying to contact us, but we just wanted to get away from everything. I mean EVERYTHING and everyone. It is what we needed and thanks for your respect and understanding. We are home now trying to adjust, so please give us time again, it is kind of like we are starting over again. We would like anyone who wants to come and visit us to please let us know, we definitely can arrange to have lunch, come over and see our pictures and videos from our awesome trip, I mean whatever, we are up for it. We do have the luxury of time on our hands right now, so just get in touch with us. We love you all so very much.
Anyone seriously interested in moving to Kauai please let us know, we are up for it, but need roomies. Joking. Kind of. Not really. May settle for California. Hmmmmmmmmmmmmmmmm...............
God's peace, grace and love to you as it has been to us"



Today I worked on the crib spindles and basket, paying attention to the smallest detail.  Renee updated a few times after Kole's departure and I will share them.  I also created a video of her collection of Kole photos from Carepages and her own stash.  You may need a flashplayer plugin to view the video if you are doing it mobile.  But its worth the trouble to see his beautiful face.  Fixing up last details this week and hoping to be in the final stages of my portrait drawing by next week.  The sit and stare, make small adjustments stage.  I can't wait to have this little bright shining light hanging on my wall in my living room with the rest of the gang.  Then Renee will be able to bring her light home and see him everyday.  Her story is so amazing, I am hoping she will share more with us.

 You can view Koles video here

Dearly Departed Drawings ~ Kole {day 376}

January 3, 2009

"The frozen platelets Kole received tonight didn't quite make his liver function levels perfect enough for surgery yet. We got the news at about 9pm that, although the levels are thisclose to being within normal range, they want to give him another transfusion for insurance. Kole was sooooo grumpy tonight because he hadn't been allowed to eat or drink since 1pm, just in case they had done the surgery tonight. He kept saying, "I want sometin' to drink, please, mama. I want bubbles (soda)." They said go ahead and let him eat and drink until midnight, then he will be NPO again. He spiked a fever tonight, 39.3 C, and was given Tylenol, and it came right down to 37 C (normal). His morphine has been regulated intravenously, the dosage has been dropped but the frequency increased to every two hours, and he even ate some "chinese noodles" tonight (translates to shrimp lo mein). He has been really sleepy and still REALLY uncomfortable. I can't imagine his belly could get any bigger without bursting. He just wants to be held all the time, in a reclined position, or on his side. After his transfusion finishes around 3am this morning, they will do more blood work, and if things are A-ok, he will get surgery in the morning, tentatively for 8am. Please pray with us. We'll inform you of the outcome tomorrow. We absolutely cannot wait for the relief."


January 4, 2009

"Sorry for the delay in updating - hectic times abounding. Yesterday morning we eagerly/anxiously waited for the big orchestration to come together, and finally, at around 1030/11am we got transferred back to Pediatric Intensive Care Unit (PICU), where Dr. Bob performed the procedure. We felt a little deja-vu, and quite a bit of displeasure being back in the PICU again, even for a short time.
The reason they kept pushing the time of the procedure back was because there were varying thoughts/ideas on how to do it among the doctors. The ultrasound tech had a hard time finding a nice, big, open pocket of fluid for the doctor to insert the needle/catheter. Kole's bowels seemed to obstruct every angle they tried, and it is extremely risky to enter near the bowel for risk of puncturing it. Turns out his abdomen isn't just one, big fluid-pocket, but rather many smaller pockets of fluid connected together. Finally, they found a pocket large enough to attempt to enter, down by his left hip bone. Next they toggled around ideas on what size/length needle to use, etc. They were trying to be extremely conservative, as risks abounded. They were going to see if they could refrain from using sedation, as the local anesthetic should have been adequate to keep Kole comfortable on top of the morphine he already was getting, but when Kole saw the masks on everyone around him, he freaked, and the doctor called for anesthesia, and Kole went under (ketamine/versed). The sedation could also be risky as Kole's lungs are under a lot of strain, and too much sedation could cause a lapse in breathing. Kole was fine, praise the Lord. Next, they kept fluids running because apparently when you drain a lot of fluid off the abdomen, the fluid in the bloodstream will try to rush into the abdomen to compensate, and this can cause a fatal drop in blood pressure. Kole remained stable through the procedure, praise the Lord. They punctured through the abdomen while being guided by ultrasound, and there was so much pressure built-up inside his poor little belly that the fluid just started bursting out. They managed to collect what they could (over 300ccs total I believe), and sent it off for testing. Dr. Bob said all went very well. They were actually hoping to get more fluid off of him than they did, though. So it appears as though we will be having another paracentesis tomorrow or Tuesday, and this time I believe they will leave the catheter in (yesterday they didn't - it was kind of a trial-run). We will be referred to Interventional Radiology for the next procedure, as they are now interested in doing it for us, seeing Kole yesterday, and the amount of discomfort he is in, it touched them and they are willing. For now he has a colostomy bag over the insertion site, and it is actually still draining, which is good for two reasons: 1 - that means he is still draining and getting relief, 2 - there's less chance of an infection/sepsis because the fluid is pushing things OUT. We spent the rest of the evening relaxing and helping Kole feel better. He ate and drank A LOT when he was able to, and even took a nap on his belly, which he hadn't been able to do before. So even though we didn't get as much as we would've liked out of him, he did find some relief, and will be getting more.
The next event that occurred was early this morning at 4am. Kole's blood oxygen saturation dropped significantly, 95-100 is the range you want to be in, and Kole was in the low 80s, like when he got diagnosed in June and flown up here. There was slight panic, and oxygen was brought in. He seemed to be grunting a lot, and had shortness of breath to the point it woke me up. Then, he had an EXTREMELY large bowel movement, "adult-sized" the nurses joked. He hadn't gone in a couple days, and let me tell ya, this was relief he needed, too. He's usually a very regular boy. His oxygen levels came back up a bit on their own after the movement, and everyone felt perhaps the struggle of "bearing down" is what kept his oxygen low. I feel the relief of the fluid off the abdomen allowed room for his bowels to move, and that correlated with the drop in oxygen as he was struggling to get it out. They play it safe here, though, and ordered a chest xray at 430am to make sure the lungs weren't filling up. They weren't. Turns out there is small area in the top right lung that could just be from the tumor, or it could be atelectasis (slight collapse), or pneumonia, but appears to be unchanged since the previous xray, or just slightly bigger. Also, when they tested the fluid that came out of his abdomen, (which was a clear, yellow fluid that resembled urine) they found some white blood cells which could be nothing or could be a sign of infection. So to cover all bases, they put Kole on some intravenous antibiotics. He is doing better today, but is still on oxygen for comfort.
Nothing could hold us back from going to see Sesame Street Live, though!! Kole HAD to see his friend Elmo, and this morning after much discussion, we were cleared for a pass to leave the hospital for a few hours and go enjoy ourselves. We had an awesome time and spent way too much money on food and balloons. We had very posh "skybox" seats, but next time may prefer to be down by the stage. I don't think Kole felt he was close enough to Elmo. Kole's friend Tay-Tay from up here at the hospital showed up as well, so it was a group affair. Kole had a great time for the most part, although he was pretty medicated, and did fall asleep right before the grand finale (missed the streamers and confetti explosion). We got LOTS of pictures so hopefully we will be able to get them posted on here for all to see.
Right now Kole is relaxing in his room, we're in 7263, and he is watching Finding Nemo and sucking in some oxygen. After much distress, the nurse managed to get a nose-cannula into Kole's nose, so he is more comfy. He is still getting maintenance morphine and antibiotics. I have no idea when the next surgical procedure will be, but would prefer it be tomorrow. They will have to recheck his liver platelets again, as well, before they can do it. So, hopefully we will be home by mid-week. They will send us home with morphine, antibiotics, and oxygen.
God Bless You All.....thanks for everything.....keep on praying.....every day a miracle......"


January 5, 2009

"Here's what's happening in the Kole saga today....Kole had to be NPO (no food or drink) all day 'just in case' they orchestrated a team together to get his next surgery done (Interventional Radiology is hard to get in with). Turns out things didn't go quite as planned, and mommy and daddy were extremely frustrated because little Kole didn't eat since 10pm last night, and it was 4 o'clock this afternoon and we still hadn't heard the plan (and of course mommy and daddy can't eat either, in front of Kole). Finally, they came in and said "Let him eat!" and scheduled the surgery for tomorrow morning (Tuesday). So we are pigging out this evening.
Dr. Neely (awesome, awesome man) is the doctor on the floor this week, and although we haven't had a whole lot of experience with him before, we are glad he was here with us today. He explained the plan to us, which includes Kole getting sedated tomorrow morning, again, to put a "pigtail" catheter in place via Interventional Radiology, which will be a more permanent line of drainage for the fluid in Kole's abdomen. They can't guarantee that this will drain all the fluid, either, because of the "pockets" of fluid, but our hope is that this will be a lot more relief than he experienced Saturday. They are also going to be starting Kole on some more aggressive diuretics after the surgery. The biggest risks involved are the same ones as before, including bleeding, infection, puncturing the bowel, lapse in breathing, and in severe cases, fatal blood pressure drop. We are confident Kole will be just fine, under the Lord's care.
In addition to the catheter placement, we requested that they please, while he is already under sedation, put a feeding tube/NG tube into his stomach. We feel that his diet is lacking the essential nutrients that he needs to make him feel his absolute best, and we can "bypass" his tastebuds and get the things he normally wouldn't care to eat into him (you know, healthy stuff). The doctor was hesitant at first to grant our request, probably because she feels it would be just "one more log" on the fire of things to deal with/take care of at home. But we insisted. It was a request, not an issue of hassle! Dr. Neely really agreed with us. He gave us so many ideas of what we can "feed" Kole through the tube, which is pretty limitless. It is refreshing to hear an Oncology Doctor talk about alternative medicine/nutritional medicine. We are excited about this.
So, tomorrow he gets surgery for the catheter placement and feeding tube placement. We still have no idea when we will be home, Kole will have to be observed. For now he remains on the antibiotics, morphine, diuretics, and oxygen, and is doing okay. He is tired a lot and can barely talk through the sedation, although you can tell he really tries to. He also is not walking, he can stand, but it is painful for him, I think, because of all the weight and pressure built up. We really want to get him moving to promote circulation, lung health, and general health overall, which is the reason for the surgery. He is not going to be happy when he wakes up in recovery tomorrow with all kinds of tubes popping out of him, but it's all for the greater good of comfort. Please say an extra prayer for Kole. We know this is in God's hands. Always has been. Always will be.
Keep you posted on the outcome, and of course, the PROGRESS!!!"


January 8, 2009

"This is Tasha updating, one of Renee's best friends. Renee and her husband are enjoying every second with Kole...Kole is comforted by having them by his side, therefore stepping away to update is not a possibility right now. Hence, my filling you all in on their behalf. I will begin by reminding you how thankful they are for all of your support, prayers, contributions, fundraisers, and kind words. As always, it is all of you, along with God, that are carrying them through this trying season of their life. I will be vague with my words because I don't want to misinform anyone, and I pray that God will give me the right words to send to you right now.
Kole had another paracentesis done yesterday, it was a success, they were able to relieve his abdomen of A LOT of fluid (I believe Renee told me it was around 1600 cc's total...imagine a liter or 2 of fluid in your abdomen), what a relief and answered prayer for Kole's comfort! They also placed a feeding tube at their request so that Kole can continue to get the nourishment that he needs. They kept a drain in his abdomen so that the fluid is able to continuously drain, so this procedure wouldn't have to be repeated. While the procedure was a success, and Kole is able to rest more comfortably, the removal of such a large amount of fluid from Kole's body caused an imbalance of a protein in our bloodstream called albumin. Albumin is necessary for the function of our kidneys. There was a large amount of albumin in the fluid in Koles abdomen, and when the fluid was released, the albumin was pulled from his bloodstream, resulting in a deficiency. This, in turn, caused Kole's kidneys to slow down. The doctors found it necessary to give Kole an albumin transfusion in an attempt to get his levels back to normal so that his kidneys could kick back into action. Renee and her husband had noticed little urine output from Kole, and also a great deal of edema in his legs. Their plan at this point was to be educated on how to balance his fluid intake and output at home so that his blood levels can remain healthy. After his transfusion, our prayers were that we would see some wet diapers and reduced edema, a sign of normal kidney function. As hours passed and Kole's diapers remained dry, the doctors came in and expressed concern for what they were seeing. They believe that if the albumin transfusion is not fixing his kidneys, that his organs may be simply growing tired as a result of the pressure that his tumor is causing. Fluid is accumulating and at this point it is not exiting the way it should. A team of doctors, along with Hospice, sat down with them and asked them many questions about what their wishes are for their son if this fluid keeps accumulating. Renee and her husband know that what is God's will will be, and they want Kole to be comfortable and in the most personal environment possible, and if their choices lie between the PICU and the room he is in now, they would prefer to stay put. They are able to snuggle with him, move him, rock him, enjoy every moment with him. While it was comforting for them to be home, it is more comforting for them to be surrounded by a wonderful medical team who has the resources at hand to keep Kole pain-free and to reassure Renee and her husband with their guidance and knowledge. I spent time with them this evening, and I can tell you, Kole is comfortable knowing that mommy and daddy are right by his side. We all know that Jesus is watching over him, and I saw with my own eyes that Kolebear knows he is too, more than once he had his little hands folded in prayer.
While you all continue to pray for their strength and Kole's comfort, please pray for WET DIAPERS tonight!!! We have seen the strength in this little boy, we believe in miracles, and we know that nothing in this world is stronger than faith. We do not know God's plan, but we know that it is not in God's will for Kole to suffer, it is not in God's will for Kole to be sick. We will not lose hope, we will only allow our faith to grow stronger. It is in God's hands, that is the one thing we are sure of. Please, in Jesus's name, pray that this family wakes up to a brighter tomorrow. On their behalf (and my own), God bless you all."


January 8, 2009

"Managed to step away for a minute to update on the PEEPEE!!! that we found in Kole's diaper this morning! Turns out it weighed-in pretty heavy, and while Kole is not out of the woods yet (his urine was iced tea colored), this means that his kidneys are still functioning somewhat, even if they've slowed down greatly. The other blessed news that I have to share is that the fluid accumulating in Kole's right lung (the side where the tumor is located) seems to have cleared up a bit. His blood saturation is up a few notches today, which means more oxygen is making it into his bloodstream. The fear yesterday, after hearing more fluid in his right lung, was that he had two separate issues - the fluid below the diaphragm (abdomen) and the fluid above the diaphragm (lungs). The original hope was that draining the fluid in the abdomen would cause the fluid in the lungs to dissipate, and yesterday it didn't seem so, but today it seems as though it has helped! Praise the Lord for He hears our prayers!
We even had a small bowel movement (it's been days....) and a SECOND PEEPEE DIAPER!
Thanks to all for your support and prayers and messages. As I looked through the message board, I was brought to tears. Your words are so moving and mean so much to me.
I don't know how frequently I will be able to update from here on out, as Kole's care becomes more critical. Please know that we are encouraging those who would like to, to come and see Kole. Just be aware that he isn't himself, there are a lot of tubes, and he only has brief moments of lucidity through his medication.
Know also that we stand in God's glory and comfort, and most are surprised to see how "well" we are hanging on, but the truth is, we have found such serenity in our closeness with God and our faith that we know whatever the outcome, everything will be okay. Kole is doing okay right now, vitals remain stable, so we can't complain. We can only enjoy every second. You are right, I have amazing friends and family couldn't do it without every single one of them. They will be helping me to update in the future, and of course, I will do what I can as well. Things are trying for us at times, and we do have our moments of unspeakable sadness and grief, and for this reason I may find it hard to bring myself to my usual routine. God bless everyone everywhere all the time. And much Peace and Refuge under His wings."

January 11, 2009

"Today is a blessed day, for Kole has been freed of his pain. At 11:50 this morning, our precious Kole recieved his angel wings. It was a moment of comfort, he rested comfortably in his mommy's arms...Daddy watched over him. He peacefully took his last breath here on earth, and as loved ones watched over him he flew away with the Lord. No more suffering, no more tubes, no more hospital beds, hospital walls, doctors, nurses, tests, or medication. Kole has fought his fight and he has won, for now he is dancing with the angels that have been waiting for him.
Mommy and daddy are spending their last few moments with Kole at this time while I update, when the time is right you will hear from then. Kole loved balloons, so in lieu of flowers, please send balloons. Balloons of all kinds, elmo, Thomas, all the things that made Kole smile. Please consider donations to the Koles guardianship account at Commerce Bank OR the Four Diamonds Fund in which helps pediatric cancer patients.
While we all grieve the loss of such a special young man, please remember that this is a time of joy. Let us celebrate his life and continue to pray for the strength and comfort of Renee and her husband, the rest of Kole's army and those who have loved him all along the way. God Bless ALL of you for being so faithful and supportive along the way.
Much love and friendship to all,
Kole's army"

While my post is later than usual today and the drawing photo not the best quality - I felt it necessary to make sure I shared the last few carepages updates before the days end.  However, when I initially thought and even hoped to have Koles drawing finished by today, the universe had a different plan.  One I agree with wholeheartedly.  There is still work to be completed on Koles drawing and he lives on.  He lives on in the heart of his mother and family.  He lives on as we read and send love, peace and prayers to his mother Renee and his family.  He is NOT forgotten.  A mother can never forget her child.  They will always think of them, wonder what they would be like today, miss them on birthdays, holidays and every day.  So I find it VERY fitting that I am not finished with the drawing, because Kole lives on.  And he will always be with us.

I worked mostly on darkening the crib rails, detailing more of the basket, adding the checked pattern to his bedding and adding shadows.  Nearly finished, not long to go.  Then we will share the story of this photo his mother lovingly chose to have drawn. 

11.02.06 - 01.11.09

Rest in Peace sweet, spunky boy

You are loved, you are missed

The beginning of Koles journey is here on Day 324