Saturday, January 31, 2015
Friday, January 30, 2015
Dearly Departed Drawings ~ Kole {day 396}
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Thursday, January 29, 2015
Dearly Departed Drawings ~ Kole {day 395}
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Wednesday, January 28, 2015
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)
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Tuesday, January 27, 2015
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.
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Monday, January 26, 2015
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.
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Saturday, January 24, 2015
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.
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Thursday, January 22, 2015
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.
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Wednesday, January 21, 2015
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!!
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Tuesday, January 20, 2015
Dearly Departed Drawings ~ Kole {day 385 bonus}
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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.
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Monday, January 19, 2015
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.
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Sunday, January 18, 2015
Dearly Departed Drawings ~ Kole {day 383}
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Saturday, January 17, 2015
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.
Wednesday, January 14, 2015
Dearly Departed Drawings ~ Kole {day 379}
Getting better
Posted Mar 21, 2009
"Spring is here...yay! I am sensing a rebirth in the air....
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.
Tuesday, January 13, 2015
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.
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Monday, January 12, 2015
Dearly Departed Drawings ~ Kole {day 377}
A Time to Heal
February 26, 2009
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
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A little shining light, burning so brightly.
Bright from the moment of birth and still burns bright after departure.
Sunday, January 11, 2015
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."
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"
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
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Friday, January 9, 2015
Dearly Departed Drawings ~ Kole {day 374}
December 18, 2008
"Time is of the essence. We need a miracle. People keep asking us what they can do for us, for Christmas or just day-to-day. All we want is prayer in Jesus' name. We wholeheartedly believe in miracles. We've seen them happen in families and friends around us. We've read about them in the Bible. We believe there is an evil that is trying to keep it's stronghold on our son, and know that the Lord is mightier. We believe He and only He can take this ravenous disease out of our son. Make him whole again. We believe. We believe.
Please believe and pray with us. Know that the prayers you say for us do reach His ears. The prayers you have said for us, mommy and daddy, have kept us strong. We have been drawn into the Lord the last couple days more than ever. There have been people placed in our path that we know specifically were put there by God. We believe His will will be done on earth as it is in Heaven. We know there is no cancer in Heaven. We know this means our son is healed by the stripes of Jesus. We look forward to giving the morphine (to keep Kole comfortable) back to the pharmacy and telling them WE DON'T NEED IT. And telling them not to bother calling the hospice, WE DON'T NEED IT. OUR BOY IS HEALED.
We invite you to attend the healing service at Harvest Chapel in Abbottstown this Saturday night to witness God's miracle with your own eyes. The more the merrier, for one voice on earth is 1,000 in Heaven. We cannot wait to spend the rest of our lives with our son and give all the glory to Him.
God bless you all."
December 25, 2008
"Our family wishes you all a very Merry Christmas. We extend our appreciation to all, for in one way or another, you all have touched us and made our days more comfortable and worthwhile.
Thank you Jesus for each wonderful day with our boy.
Kole is thriving more in his home setting, I believe, than he would be in the hospital. We are keeping his fevers under control, he is slightly more tired than normal, but other than the occasional belly-ache and diarrhea, he is doing quite well right now. We encourage everyone who wants to see him to please arrange it with us, you are more than welcome to stop by if you are healthy.
We are heading to the Strasburg Railroad tomorrow, Kole has been asking to go for days. Let me know if you are interested in coming along/meeting us there. Our intention is to get there to make the noon run, followed by the Choo Choo Barn tour.
Again, have a wonderful holiday season. We can't express enough thanks."
December 31, 2008
"We want everyone to know that we are hanging tough and we've got our armor on, ready to fight into the new year. Praise the Lord. Kole is sleeping comfortably tonight between his daddy and I, and I praise Him and give thanks for another day. Thanks to the Bocanegras for the Bible Study and the invaluable spiritual guidance. We are practicing with our new tongues.
As always, let us know if you'd like to visit Kole, or even us for that matter. Anyone healthy welcome. We have been enjoying the quality time spent with our families and friends. Thanks for the homecooked meals and Christmas presents. This otherwise difficult time of year was quite blessed.
Happy New Year to All and Spreading God's Peace and Love"
January 2, 2009
"Just wanted to keep everyone posted on what's been going on with Kole this week. Ever since Sunday/Monday, he has been complaining more and more about his belly, exclaiming, "My tummy hurts mommy". This pain seemingly coorelated with his bowel movements, so we weren't too concerned at first. He continued to run some occasional fevers, but overall his pain was controlled with Tylenol and Ibuprofen. However, Tuesday night, we became more concerned after noticing that he wasn't wanting to eat as much (he continued to drink very well - we have been pressing our own fruit and vegetable juice smoothies for him). He complained more and more of the tummy aches to the point where he was in serious distress. He would touch his right side, where his liver is, when he cried. We called our hospice nurse because his abdomen was BULGING and we were worried. He looked pregnant. He had blue veins like roadmaps all over his abdomen. We thought maybe he had a bowel obstruction, which could cause all the belly-bulge, but after the nurse came, she said she heard plenty of bowel movement, his temperature was fine, his blood pressure was fine, and his lungs were fine. There wasn't much she could do at that point in the middle of the night, but recommended we start giving the morphine we were sent home with more regularly. We got a visit from another hospice nurse the following day, Wednesday, and she agreed that he was "fine", i.e. vitals are all okay. We kept Kole on his steady morphine dose, every four hours, and struggled watching him suffer. He avoided laying on his belly at all costs and just wanted to be held all the time. One of my best friends, Tasha, who is a nurse, came over to hang out with us on New Years Eve as we held Kole and watched him sleep a lot. She asked about his abdomen, because it is quite alarming to look at, to see what the hospice nurses had said. I said I wasn't sure what they were planning on doing about it, and she recommended that we call the doctor (Kole's oncologist here at Hershey). Tasha swore up and down that it was ascites, which is fluid buildup inside the abdominal cavity, due to end-stage liver disease. As time passed, the belly got bigger, and bigger, Kole got more uncomfortable, wasn't walking much, tired all the time, not eating, his legs and feet were swelling up, and as you laid your hands on his belly you could feel "bubbles" or "waves" inside. He enjoyed being in the bath to alleviate the weight. Last night, we were alarmed when we heard a loud rumbling from inside the abdominal cavity, and Kole said, "Oh, my....I just burped." But he didn't burp. The sound was, like, trapped inside. So we paged the doctor, and she called us back directly at like 10:30pm. We had been planning on bringing Kole to Hershey on Monday, but we didn't feel like we could wait that long. We were given free, VIP-suite passes to the Sesame Street Live - Elmo Grows Up show at the Giant Center this Sunday (yay!!!), and we are bound and determined to find a way to make Kole more comfortable to be able to enjoy it. We found out that ascites can actually be relieved by paracentesis, where they drain the fluid out surgically. The doctor said that she needed to do an ultrasound, so here we are at Hershey today. We had an ultrasound at 11 that confirmed a very large amount of ascites within Kole's abdomen. His weight is up 2 kgs, which is guesstimated to be around one liter of fluid buildup inside his body. To get a clear mental picture, it's like he is carrying around a 5-6 pound bag of sugar on his belly. They followed-up with an xray to check the lungs, which looked pretty good. There was a small amount of pleural fluid in the lungs, but the doctor said that could be a result of the fluid from below pushing up, and if we can get the fluid out, this will probably go away. His lungs still sound very good and clear. Also, they saw from the ultrasound, that even though there is a large amount of fluid which has resulted from his disease, the tumor itself and the surrounding lymphnodes do not appear to have grown much, there isn't much difference since December 15th. Praise the Lord for he hears our prayers!
The next step after the scans today was Kole had blood drawn to check and see if his liver clotting function is okay, in case he would need to have a surgical procedure. Turns out his liver clotting platelets are low, and will have to be replenished before he can have the procedure. Right now, he is in his room on 7 west receiving this transfusion, and he is taking a nap with daddy. We are waiting for the pizza he ate earlier today to digest as well, he needs an empty stomach for the procedure. The doctor really brainstormed for us, and seems to work us into busy schedules, what a miracle worker. A parentesis to drain ascites in a small two year old hasn't been done before. This makes me a little nervous. The doctor said the procedure will have to be ultrasound-guided, so they know what they're "hitting" when they go in. They will also need an anesthesiologist there as well as the person performing the surgery. The well known peds surgeon here, isn't here for a few days. And we don't have the luxury of time at this point. So the job has been handed over to Dr. Bob. We love Dr. Bob anyways. He was one of Kole's original doctors when we arrived here in the PICU, with Dr. Ceneviva. Dr. Bob worked for several years at St. Judes, and is familiar with this procedure, and feels confident performing it on Kole. After seeing Kole today, they all feel that this is a worthwhile attempt to make him more comfortable, as he is otherwise still doing quite well. They are on uncertain ground, so they aren't sure how long the relief will last, will it be days or weeks? He may need to be "drained" again if the fluid reaccumulates, so I think they plan on keeping the catheter in, at least intially, in case this happens, it won't be invasive to go in a second or third time. Looks like we will be here at least until tomorrow, they do want to get this done as soon as possible, but of course they have to orchestrate quite a team to do it. So that's what we're waiting on. We pray this surgery goes well, that Kole gets the relief he deserves, that the Lord keeps this fluid from reaccumulating, and that Kole can enjoy seeing Elmo Live on Sunday. Praise the Lord!!!
Thanks to all praying for us, and a big hug to everyone helping with fundraisers. We love you so much even though we may not even know you that well. You are all doing such a special and selfless thing for us. We don't even know how we could ever say thank you enough, but, THANK YOU.
God Bless and I will keep everyone posted on the surgical outcome. "
I attended a crystal workshop at Alta View Wellness Center last night with a friend and learned about crystals and ways to "release" the grief and sadness I've taken in during the past year regarding Dear Departed Drawings. It felt like I had been holding it all since last January. We were given crystals to use during the release meditation that we are able to keep and bring home with us - called a Mojo Bag. I now have a few new crystals to use during a cleansing or clearing meditation after I am done drawing for the day. Not sure why I didn't think of doing that before. I also use crystals during meditation before I start drawing and keep a few near the drawing as I work. I will take pictures and post information about my newest crystals soon. Today I worked on little things here and there that I considered unfinished, darkening tones, adding shadows, defining lines. We are getting closer and closer to completion. I hear the sound of mylar balloons being jostled (Kole really loves balloons)
The beginning of Koles journey is here on Day 324
Wednesday, January 7, 2015
Dearly Departed Drawings ~ Kole {day 372}
December 12, 2008
" Discharged on Wednesday the 26th after the blood cultures
remained negative (must have been a virus or one time fever spike),
we immensely enjoyed our Thanksgiving weekend at home. We had a
delicious meal that we didn't have to cook or clean up, and we
shared time with our families. Both my boys were feeling well, we
shared our time together, who could ask for more? Four days
home.
We returned to Hershey Monday the 1st for a 5 day round of chemo (ifos/etop).
Please pray that these three rounds of compacted chemotherapy since the last CT scan will reduce Kole's tumor and prevent spread. He has been hit hard with the chemo for the last 6 months. I almost can't believe it's been 6 months already that we've been fighting this. Some days it feels like 6 years, though, too. This Monday the 15th is a really big day. It is another follow up CT scan to see if the chemo is doing anything at this point. We went back to the chemo agents used initially that got the most shrinkage, and the hope is that we have a smaller, operable tumor. The surgeon said this is when we will have "Part 2" of our meeting. Our first meeting was bleak, but he did say it was "to be continued at a later time". And now this is the later time. My husband and I have pretty much been on a rollercoaster this week, constant anticipation and anxiety. Our sons life almost seems to hang in the balance of this week. I am feeling optimistic. Seems I am always feeling more optimistic than the body language I get from our doctors sometimes. They don't know my son like I do.
We have good news! I know this is Advent and a busy time for many people considering the holidays are coming up, but I am posting this on the carepage as an open invitation for all who wish to attend. Kole will be baptized this Sunday at Christ Lutheran Church on Main Street in Manchester. It will occur amid the usual 1030 service. This is a very special day for Kole, and for all of us who love him. We encourage you to come and be with us physically for this special event, especially because you all have been there for us spiritually, prayerfully, and emotionally. It will only take 10 or 15 minutes, but ultimately will be a timeless moment for us.
For those of us who got used to seeing Kole with some hair again, he is back to his old baldy self. With my husband being well for two weeks straight, and Kole being his usual resilient self, we find ourselves waking up and just taking advantage of every moment and opportunity that comes our way. The three of us being together in health means everything. After Kole's CT Monday, there will be another chemo round, while decision making is done, which we're sure will lead to a successful surgery/radiation combo. There is a possibility that we will seek a third opinion if Hershey still does not want to operate. That will be at the transplant center in Pittsburgh, or at MSKettering in NYC. Thanks Cynde for the referral info on Dr. LaQuaglia, sounds better than fantastic.
I wanted to express my appreciation to Tammy and "the girls". You have made Kole's Christmas a lot brighter by adopting us for the holidays. And thanks to those who thought of mommy and daddy too. Truly, thank you. It means more than you know.
Also thanks to the APHON nurses at Hershey who adopted us for Thanksgiving, and sent home tons of goodies and groceries. We won't be visiting the "center aisles" at Giant for months.
Thanks to Christ Lutheran Church for the generous donations given last Sunday at the service. It will definitely help make our Christmas season more comfortable and we can't thank you enough. We still find it hard to believe that people we don't know all that well can pour so much love into us. Thank you.
Thanks Heather, Matt, and Collin (Carson too) for all the birthday gifts for Kole. Radiator Springs is complete!
I got some free passes through Ronald McDonald house to go to Hershey's Christmas Candylane. It is supposed to be "nice" this weekend, we may just go on Saturday if Kole feels well.
God bless everyone reading this. We love you."
December 17, 2008
"(This is Renee's best friend August updating for her).
So, Monday was the BIG day for the Koles family. Kole had another CT scan so that the doctor could see his progress. Renee and her husband received the news that Kole's tumor has not shrunk anymore, but has grown. Renee informed me that it is growing upward toward his heart. Due to this outcome, the doctor felt that treatment was not working, and sent them home. She said that radiation will not work either, because of the location of the tumor - it would burn up his little lungs. Surgery is still not an option either. Everyone that knows what is going on are devastated, but still remain positive that God is going to pour upon their son a miracle. Kole is still running around like an energetic 2yr old, but Renee said that he struggles a little as far as his appetite goes. I really don't know how to describe how Renee and her husband are feeling, but to say that the past few day have been very emotional. Renee said that the doctor has been in touch with St. Jude's and will also get in touch with Sloan Kettering to have them analyze Kole's case. For so long Kole has wanted to go to tumbletown to play, but they were fearful to take him because of the risk of being around so many kids. Well, he got what his heart desired. They took Kole and Karly to tumbletown and they had a blast! We are all praying for a miracle now, and they are just trying to enjoy every minute they have with Kole. A few of us got together at our friend Tasha's house last night, and had a great time just hanging out. Kole is just the most precious little boy, and every time he talks its like music to my ears. He is just so sweet, and well mannered. He is smart, and loves to talk. There was moment when all of us grown-ups were in the kitchen, and we could hear the Kole talking in the living room. His daddy looked me with such sadness and said "I just can't imagine my world without that (the sound of Kole's voice)". We spent the last day just talking about how much we love Kole, and how truly special he is. We have laughed, cried, and prayed in the last 24 hours. My mother and stepfather (Maureen and Happy) came by last night and ministered to all of us, and prayed over Kole for healing. We are just asking everyone continue to pray for Kole's healing, for his daddy to remain healthy, and for peace of mind for his parents so that they can focus on enjoying every minute they have with Kole. I am sure that Renee would have written this much better than me, but she is just so exhausted right now. I am sure over the next couple of days she will be update again.
Thanks for all of your prayers for their family."
Today I focused on the basket next to Kole. Detailing and darkening lines getting ready to shade the wicker. I am really really really happy with Koles face. Overjoyed I accomplished his "look". I hope I made his mother and family proud. Still lots of little details to finish. This little man is such a strong spirit. His family and I aren't the only ones that can feel him....
We returned to Hershey Monday the 1st for a 5 day round of chemo (ifos/etop).
Please pray that these three rounds of compacted chemotherapy since the last CT scan will reduce Kole's tumor and prevent spread. He has been hit hard with the chemo for the last 6 months. I almost can't believe it's been 6 months already that we've been fighting this. Some days it feels like 6 years, though, too. This Monday the 15th is a really big day. It is another follow up CT scan to see if the chemo is doing anything at this point. We went back to the chemo agents used initially that got the most shrinkage, and the hope is that we have a smaller, operable tumor. The surgeon said this is when we will have "Part 2" of our meeting. Our first meeting was bleak, but he did say it was "to be continued at a later time". And now this is the later time. My husband and I have pretty much been on a rollercoaster this week, constant anticipation and anxiety. Our sons life almost seems to hang in the balance of this week. I am feeling optimistic. Seems I am always feeling more optimistic than the body language I get from our doctors sometimes. They don't know my son like I do.
We have good news! I know this is Advent and a busy time for many people considering the holidays are coming up, but I am posting this on the carepage as an open invitation for all who wish to attend. Kole will be baptized this Sunday at Christ Lutheran Church on Main Street in Manchester. It will occur amid the usual 1030 service. This is a very special day for Kole, and for all of us who love him. We encourage you to come and be with us physically for this special event, especially because you all have been there for us spiritually, prayerfully, and emotionally. It will only take 10 or 15 minutes, but ultimately will be a timeless moment for us.
For those of us who got used to seeing Kole with some hair again, he is back to his old baldy self. With my husband being well for two weeks straight, and Kole being his usual resilient self, we find ourselves waking up and just taking advantage of every moment and opportunity that comes our way. The three of us being together in health means everything. After Kole's CT Monday, there will be another chemo round, while decision making is done, which we're sure will lead to a successful surgery/radiation combo. There is a possibility that we will seek a third opinion if Hershey still does not want to operate. That will be at the transplant center in Pittsburgh, or at MSKettering in NYC. Thanks Cynde for the referral info on Dr. LaQuaglia, sounds better than fantastic.
I wanted to express my appreciation to Tammy and "the girls". You have made Kole's Christmas a lot brighter by adopting us for the holidays. And thanks to those who thought of mommy and daddy too. Truly, thank you. It means more than you know.
Also thanks to the APHON nurses at Hershey who adopted us for Thanksgiving, and sent home tons of goodies and groceries. We won't be visiting the "center aisles" at Giant for months.
Thanks to Christ Lutheran Church for the generous donations given last Sunday at the service. It will definitely help make our Christmas season more comfortable and we can't thank you enough. We still find it hard to believe that people we don't know all that well can pour so much love into us. Thank you.
Thanks Heather, Matt, and Collin (Carson too) for all the birthday gifts for Kole. Radiator Springs is complete!
I got some free passes through Ronald McDonald house to go to Hershey's Christmas Candylane. It is supposed to be "nice" this weekend, we may just go on Saturday if Kole feels well.
God bless everyone reading this. We love you."
December 17, 2008
"(This is Renee's best friend August updating for her).
So, Monday was the BIG day for the Koles family. Kole had another CT scan so that the doctor could see his progress. Renee and her husband received the news that Kole's tumor has not shrunk anymore, but has grown. Renee informed me that it is growing upward toward his heart. Due to this outcome, the doctor felt that treatment was not working, and sent them home. She said that radiation will not work either, because of the location of the tumor - it would burn up his little lungs. Surgery is still not an option either. Everyone that knows what is going on are devastated, but still remain positive that God is going to pour upon their son a miracle. Kole is still running around like an energetic 2yr old, but Renee said that he struggles a little as far as his appetite goes. I really don't know how to describe how Renee and her husband are feeling, but to say that the past few day have been very emotional. Renee said that the doctor has been in touch with St. Jude's and will also get in touch with Sloan Kettering to have them analyze Kole's case. For so long Kole has wanted to go to tumbletown to play, but they were fearful to take him because of the risk of being around so many kids. Well, he got what his heart desired. They took Kole and Karly to tumbletown and they had a blast! We are all praying for a miracle now, and they are just trying to enjoy every minute they have with Kole. A few of us got together at our friend Tasha's house last night, and had a great time just hanging out. Kole is just the most precious little boy, and every time he talks its like music to my ears. He is just so sweet, and well mannered. He is smart, and loves to talk. There was moment when all of us grown-ups were in the kitchen, and we could hear the Kole talking in the living room. His daddy looked me with such sadness and said "I just can't imagine my world without that (the sound of Kole's voice)". We spent the last day just talking about how much we love Kole, and how truly special he is. We have laughed, cried, and prayed in the last 24 hours. My mother and stepfather (Maureen and Happy) came by last night and ministered to all of us, and prayed over Kole for healing. We are just asking everyone continue to pray for Kole's healing, for his daddy to remain healthy, and for peace of mind for his parents so that they can focus on enjoying every minute they have with Kole. I am sure that Renee would have written this much better than me, but she is just so exhausted right now. I am sure over the next couple of days she will be update again.
Thanks for all of your prayers for their family."
Today I focused on the basket next to Kole. Detailing and darkening lines getting ready to shade the wicker. I am really really really happy with Koles face. Overjoyed I accomplished his "look". I hope I made his mother and family proud. Still lots of little details to finish. This little man is such a strong spirit. His family and I aren't the only ones that can feel him....
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My Crystals and Minerals
Aegirine |
Eliminates negative thoughts, energies, attachments and replaces them with the light of the positive. It promotes wholeness and healing.
I purchased this crystal at the MUM Expo from one of the crystal vendors. The Odds and Ends Corner. The owners (husband and wife) had great energy and were so welcoming. I really enjoyed my conversation with the husband. He asked me what I was looking for and I told him I didn't really know but I would know when I found it. So he asked me what I do, I told him I am an artist and he handed me this mineral. Told me it would help me in my work and it is one of the minerals I sometimes place on the corner of my drawing board while I work.
Botswana Agate
Apache Tear
Apatite
Amethyst |
Spirituality and contentment. Stimulates the Third Eye, Crown and Etheric Chakras. Enhancing cognitive perception as well as accelerating the development of intuitive and psychic ability. It initiates wisdom and greater understanding, and is a stone of comfort for those grieving the loss of a loved one. Enhances one’s creativity and passion. Strengthens the imagination and intuition, and refines the thinking processes. It helps in the assimilation of new ideas, putting thought into action, and brings projects to fruition.
I found this amethyst at a festival being sold as a tealight holder. The owner only wanted $5 for it and had told me he had collected the specimen on his own and drilled the hole. I couldn't pass up this awesome deal and purchased it without thought. I don't really like the idea of a hole drilled in it, but it does look pretty with a candle glowing inside.
Angelite
Apophyllite |
Apophyllite uses:
Aids to release negative energy, aiding you to be happier, calmer and more at peace. Infusing your auric field with high vibration light energy from the spiritual realms. Excellent ability to transmit their energy and are uplifting. Relief from stress, tension and anxiety. Stimulates the Third Eye Chakra, intensifying your inner vision, and clearing any blockages in the Crown Chakra. Allows the flow of light from spirit to move throughout you and infuses spiritual light and love.
My mother purchased this crystal for our children's bedroom. The girls kiss it good night and thank it for protecting them while they sleep. My oldest loves to thank it for "scaring away the monsters and ghosts" (I smile at her and tell her they aren't real, but she insists on stating this line anyway) We keep it high on a shelf for viewing and bring it down nightly for intention setting or as needed when the girls are feeling scared at night.
Aquamarine |
Resonates to the energy of the ocean, helping the holder to connect with the nature spirits of the sea. Calm fears and phobias. Promotes verbal self-expression. Enhances spiritual communication and clears communication blocks. Also used to align all of the chakras and enhance the aura. Aids in the assimilation of new knowledge. Encourages intellectual growth and inner knowledge, opening one up to intuition and the super-conscious mind. Also works with the Heart Chakra by helping one to realize their innermost truth. Facilitates the releasing of old patterns of behavior that no longer serve, and that actually inhibit one's growth.
I found this beautiful but tiny specimen at the Mum Expo at a crystal vendor. The picture does not do the color justice. It is a beautiful, delicate, clear, aqua color. Sometimes I carry this one with me when I go out, depending on where I am going and why.
Azurite Malachite
Celestite |
Revered for its high frequency and Divine energies, and is known as a powerful healing crystal. Connects one with the Angelic realms, allowing for the free-flow of these higher frequencies into the Crown and Third-Eye Chakras, and also down into the Throat Chakra for expression. Brings mental calm and clarity in the midst of any chaotic circumstance. Relieves stress, anxiety and obsessive behaviors. Alleviates any type of stage fright or nervousness. Gives courage to those who suffer from agoraphobia (fear of crowds) or public speaking. Brings harmony and balance, assists in finding and maintaining inner peace. Facilitator for deep states of meditation, helping to calm the mind and open it to communication from the higher realms. Assists in recalling not only dreams, but also the specific details of the dream. Information imparted during the dream state will also be recalled with perfect clarity.
I found this crystal at the MUM Expo, also from the Odds and Ends Corner. It caught my eye and I knew what it was and it was such a beautiful specimen. I did not hesitate in this purchase. I almost always use it when I meditate and it also graces my drawing space while I work.
Pink Chalcedony |
Encourages kindness and all good qualities. Brings out a sense of childlike wonder and willingness to learn new things. Encourages love, sympathy and kindness. It is a creative stone that encourages story telling. Also a spiritual stone that encourages empathy toward others and inner peace. It helps people with trust issues. Promotes compassion, heart opening, and heart maturity. Makes you aware of the suffering of others and of yourself.
I found this mineral at the MUM expo from a crystal vendor. I was intrigued when I saw it and wanted it because of its uniqueness. I love the color and the ebb and flow of the piece itself.
Chrysoprase
Cinnabar
Citrine
Danburite
Blue Fluorite |
Highly protective and stabilizing stone. Useful for grounding and harmonizing spiritual energy. Increases intuitive abilities, links the human mind to universal consciousness, and develops connection to Spirit. Anchors intuitive insights into the physical plane, allowing mental and physical coordination. A popular stone among energy healers, Fluorite can also clear the aura of mucky energies. Heightens mental abilities. Assisting in rapid organization and processing of information and can bring mental clarity and stability to an otherwise chaotic situation. Absorbs negative energies from the environment and is effective at Auric and Chakra cleansing. Can also shield the user from psychic manipulation. When used with the Third Eye Chakra, Blue Fluorite brings spiritual awaking and clear communication between the physical and spiritual planes. Used with the Throat Chakra, Blue Fluorite aids in orderly communication of intuitive insights. The calm, serene energy of Blue Fluorite brings inner peace.
I found this beautiful specimen at the MUM expo from one of the crystal vendors and couldn't put it down. I often use this while meditating and it often has a place on my drawing board while I work. I also have a beautiful rainbow fluorite bracelet that I like to wear.
Himalayan Salt Crystal |
Natural ion generators, emitting negative ions into the atmosphere. Negative ions restore and neutralize air quality. Negative ions can be used to treat illness and improve health. Increases chi. Eliminates allergens. Supports the immune system. Boosts serotonin levels. Improves mental alertness. Promotes general well-being.
We have four of these tealight holders and one large salt lamp (plugs into wall) in our home. We mostly use them in the living room but sometimes put the lamp in our bedroom as we sleep at night. Not only are they pretty but they purify the air.
Black Kyanite Blade |
Works with all Chakras, focusing most on the Root Chakra. Meditating with Black Kyanite can help one to come up with important insights resulting from exploration of the subconscious mind. It is often used to also explore past lives, and also to anticipate how current actions affect future lives. Full of healing energy, Black Kyanite is a favorite among energy healers. Helps to open the lines of communication between people and keeping a piece with you can help out in situations of conflict or misunderstanding. Transmits and amplifies high-frequency energies, making it a great stone for attunements, meditation, and dream-work. Brings a calming, tranquilizing energy to the body, centers you in preparation for meditation, and assists in receiving intuitive and psychic thoughts, as well as dream recall. Kyanite restores Qi (or Ki) to the physical body, and balances yin/yang energies.
I picked up this curious piece from the MUM expo and I just found it so curious. I admit I haven't explored it much and am looking forward to using it more this year.
Blue Kyanite Blade
Lapis
Moonstone |
Has a powerful vibration that may heighten psychic abilities, and aid you to embrace your gifts. Their frequency allows you to feel heartfelt joy... that flows out into your auric field. You may feel a profound sense of deep inner awareness and recognition of your destiny. Enhances intuition. May raise your psychic gifts if you hold it while doing a psychic meditation. Within women in particular, it may stimulate the gift of psychic visions or clairvoyance.
I found this stone at Your Inner Light and I also own a moonstone necklace that I wear nearly everyday. This photo does NOT do the stone justice. My moonstone has the most stunning rainbows that can be seen throughout the piece as you tilt and turn it in the light. Sometimes I meditate with it and sometimes it graces my drawing board as I work. I particularly like wearing it.
Obsidian
Snowflake Obsidian
Opal
Clear Quartz |
Assists the higher chakras to emanate white light and aids your connection with spirit. Create a powerful resonance within both the Third Eye Chakra and the Crown Chakra... which is the highest chakra in the physical body. The Crown Chakra connects you up to the Soul Star Chakra... situated in the etheric body above the head. Brings clarity to your communication and will amplify your thoughts and may assist you by stimulating clearer thinking. It will aid all chakras. Amplifies the vibration of other crystals it is used with. Has a positive effect on all chakras as it protects the aura and expands the human energy field.
The larger piece of quartz my husband found in my Nan's and Pap's house. My Nan was moved to a nursing home and we were set with the task of downsizing her belongings and finding them homes. It was found in a box/container with other random objects. We were both quite surprised to find it there and pleased at the same time. So it made the trip home with us and is displayed in our living room with the others. The smaller piece I think I picked up at the MUM Expo - which if you haven't figured it out by now, was a great place to find crystals and minerals.
Lemurian Quartz
Lithium Quartz |
Brings emotional peace, stress release, and relaxation. Balances the brain and the emotions. Calming and soothing, Lithium Quartz uplifts the mental and emotional bodies, and gently moves repressed anger and grief to the surface so it can be healed. Can also heal emotional issues from past lives. Use Lithium Quartz to open and heal the Heart Chakra, or with the Third Eye Chakra for powerful meditations. Can also activate and cleanse all of the Chakras. It is the presence of the Lithium that makes this Quartz Crystal so special. Excellent meditation stone that will heighten the profoundness of your inner journey and support spiritual growth. It takes you easily to the higher realms and helps you to make heart felt spiritual connections that have an amazing beauty and depth. It is a wonderful stone for healers to use and to wear... as it helps to create a peaceful and harmonious space for healing.
This is my new crystal I purchased for myself as a Christmas gift from Crystal Clan on Etsy. I am in love and I put it under my pillow at night. Since doing so I have many dreams and experiences at night. It is rather large and has a decent weight, I would love to carry it with me everywhere but alas it is a bit large and bulky. It has had a spot on my drawing board since I received it and I love holding it and meditating with it. My husband also loves the energy of this crystal.
Rose Quartz
Smoky Quartz
Rhodonite
Selenite
Shattuckite
Black Tourmaline
Variscite
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