Dearly Departed Drawings ~ Kole {day 345}

June 24, 2008

"Good morning, it's Tuesday and we've officially been here for two weeks (sigh). Last night, Kole got a little bit of morphine to relax him and to ease a little bit of discomfort. He hasn't been wanting to eat as much as we'd like, and we put our heads together with the doctor and she suggested the morphine to take the edge off the mucousitis (sore mouth). He seemed to be more "chilled" last night afterward and slept really well. This morning he ate a decent breakfast of english muffin, cheerios, and raisins, and drank pretty well. Physical therapy showed up this morning (yay!) and gave us some techniques that we can use to help Kole start walking again. He is able to bring himself up to sitting or standing position by himself, but can't take any free steps. So now he has a little push-car that he will be pushing around in no time, we're sure. He is already making progress, he slid off the "couch" in the room and started "cruising" by himself, up and down the couch, picking up toys. The central line is now totally out and healing. They put an IV in his right arm yesterday, and Kole was really frustrated because he had no use of his dominate hand. Then it leaked and when the girls came in to fix the leak, they accidentally pulled it out. We were not happy about this, but took it as a blessing in disguise, because then they had to put another IV in, this time in left arm (and a little higher up on the arm), so now he actually has use of both hands. He is happier. Today he has a real outfit on! I brought one in from the diaper bag and it's nice to see him look like a "real boy" again, no more gowns. They recommend that Kole just wear onesies again, for easy access, but we're kind of thinking, do they make 18-24 month onesies? He hasn't worn onesies in awhile, but if anyone has any 18-24 month onesies they don't need anymore, please let us know. The doctor said she would like to keep Kole on a very small scheduled dose of morphine throughout today to see how he does, if it makes him eat a bit easier, then we hope we won't have to use the feeding tube. I don't like the idea of him being on the morphine, but also don't like the idea of the feeding tube, so, we'll see. Hopefully he just eats and eats and we won't need either soon. They aren't going to do any blood today, she said, they are giving him a day off from being poked. We will most likely be able to have visitors again by Thursday, his ANC was at complete zero yesterday, which means zero immune system right now (but that's what they want). We'll see tomorrow if they are coming back up, we think they will. And we were told at this time red blood cell count looks good, so no transfusions necessary (yay!). We will keep you posted on any further developments. Thank you for ALL of your prayers and keep 'em comin', the tumor is shrinking!!

Just wanted to update a couple things before we turn in....Kole had a great afternoon and evening. He ate a great lunch and watched the movie Cars (he loves Lightning McQueen!). The doctor ordered regular, low doses of morphine and I think it is much needed. He, behaviorally, is so much better with it. His mouth doesn't seem to bother him so much and he is eating better! One little setback we had today was the IV, it seemed to be obstructed and then they thought they would have to redo it again (sigh) but turns out it is actually okay and he received at lot of things through it today just fine. This afternoon, our amazing wonderboy actually WALKED BY HIMSELF the whole way down the hall (God bless morphine when you need it)! It started out with help from a walker, but then he was like, nope don't need it! And off he went. He can now squat, and come back up to a standing position on his own as well....he has his legs back! At least for now. And because he ate so well, he didn't need a feeding tube like they thought he would. He is getting some hydration through the night via IV, but that's all just added bonus. He is drinking well, too. We are looking forward to his ANC level coming back up, we'll know tomorrow where we stand. We hope they look good by Thursday, and then, hello weekend visitors! We reached a lot of milestones today and are so glad we can share them with all of you. God bless, and thanks again for your amazing wave of love and prayers, they truly are miraculous!"


Today I worked more on the crib spindles, a bit on Koles hair and I was reminded of where we began with Kole on day 324.  This is not my story, I am simply sharing Koles mother, Renee, carepages.com journal she kept during this space in time.  I've struggled with this story, it hits so close to home, it could be me - it could be my kids.  I have three adult relatives that suffered (and lost their fight) from different types of cancer and I imagine a child would be twice as awful.  This is the first time on the blog I am sharing someone elses "blog" of sorts.  Renee has agreed to share Koles story with us.  Normally the drawing days are filled with my memories from the past or day to day happenings.   This time it is Renees words I share.  I hope after sharing these beautiful souls with you - you take action.  Kind words to others, compassion, empathy, a hot meal, a visit to the hospital, support, love, listening ear... Turn your love light on.

Dearly Departed Drawings ~ Kole {day 344}

June 22, 2008

"Today is a pretty normal day so far, as far as normalcy goes these days. Kole wasn't into breakfast very much, he did eat some pancake with butter and syrup but wasn't into the bacon. He has been slightly more fussy than usual and a bit clingy to boot, we figure because he has been running a lowgrade fever since last evening. Maybe all the Care Bears videos I found for him down at the volunteer desk will help! Today we gave him a spongebath, which he wasn't really into, but I think he felt better afterward because he took a 2 hour nap (mommy's butt hurts a lot, I held him the whole time in a wooden rocking chair). Then we had some company (Greg and Deb, Larry and Carol), and he enjoyed beating all of us with the balloon they brought! He was laughing hysterically. Then he had a decent lunch, and we were interrupted by the echocardiogram people, which is what is going on now. He does not enjoy this. We don't have the results of the blood culture yet, but hope it is negative, we should know by this evening (takes 24 hours). Thank you so much for all of your prayers, today. The days of the week are all running together, but I believe today is Sunday and many many people will be praying during their church services, I am sure. I can't believe I have been here for 12 days now and haven't been home. But I will continue to stay by the side of my only son, the love of my life, sore butts or not. For those of you planning on visiting, I think we have plenty of visitors for today, but let me know if you have another day in mind that you would like to come up. His immunity is just so low, and we have to be really careful at this point. Of course, if you want to come and hang out with Kole's parents (wink wink) for a while, that would be just fine. My husband is actually having kind of a rough day today, and we realize we do need to get out and take care of ourselves sometimes. "


 June 23, 2008

"Kole's most recent echocardiogram showed not much has changed, although the fluid around the heart went from moderate to small again (good news!). It just seems to go up down up down. This is the reason for the rapid heartbeat, we think, not to mention that it beats faster when he has a fever, which he has had for the last 36 hours. Tylenol does bring it down. The blood cultures are still showing negative for bacteria, which is awesome, too, although it does take 72 hours for the complete process which will show if he is "growing" anything in there. Right now we are rejoicing in the fact that it is Monday and OUR oncologist is finally the one on call this week! Yay! We love her. She came in and spoke to me a few minutes ago. We have been pushing to get Kole's central line in his neck out. They originally put it in just as an impromptu/temporary thing when he got the biopsy done (because they wanted to kill two birds with one stone) but now it is two weeks later and this thing is red and irritated. Plus, when his blood culture did come back positive for bacteria last week, they found that one of the ports on this central line was the cause. Although they did administer the antibiotics, we just feel like this thing is the source of all the problems (fever, bacteria, infection). I was just told that they will be taking this out in the next couple hours, and putting in a temporary line in his arm, where they can administer whatever they need to, until the Broviac (permanent line) is put in, which is likely to be Monday, the doctor  said. She wants to see Kole's ANC levels come back up by Thursday, and she said when that happens, we can take him down to the playroom and just get out of the room in general. He will be stronger by the end of this week, and then we can finally have a good couple days over the weekend before the surgery Monday to put the Broviac in. Then I believe he will begin the next round of chemo promptly afterward, Monday night. The doctor visually looked Kole over and said she is pleased because it looks like, from the outside, the tumor has already been reduced! Although she did show some concern about his weight. She said just to push him to eat more often and offer more Pediasure, and if need be, they will put a feeding tube in so we can pack some pounds on little man. Anyways, I have to get back to the room. We got some visitors (who stayed outside but he went to be with him) and I am here at the computer so no one is with Kole right now and I hate the thought of that! God bless this beautiful day, the prayers across the lands are working! I must get back to my son!"

 

Dearly Departed Drawings ~ Kole {day 343}

June 21, 2008

 

"What a better start to a day! Kole had a nice breakfast (which stayed down) and spent most of the morning snuggling with daddy. Cousin Karley was here with us and boy did she entertain him...We got many smiles and giggles today from Kole. He really likes when you pop bubbles and play peekaboo. He also maintained a really nice lunch of pizza, soup, and a couple baby carrots. Right now he is sitting up in his crib (by himself!) and playing with some trucks, a new keyboard (thanks Carol!) and his shapes-sorter toy (he can do them all!). I feel like the cleanest person in the world, wiping washing wiping washing. I seem to be more level headed today, and I think that Kole's happy energy is flowing into me. Thanks be to God for all the blessings of the day so far. Thanks Maureen, for your wonderful prayers of healing that you placed upon Kole at yesterday's visit. We have been praying over Kole constantly, that the living tumor will bow to the name of Jesus and shrink, and Kole will be healed. Daddy had to drive home today, so it's a bit lonesome for me, but I am enjoying some one-on-one with Kole. The guardianship charity account that is set up at Commerce Bank for Kole has some glitches, apparently, people have been trying to donate and there have been some roadblocks internally at the bank. We apologize, and this will be straightened out very soon. Also, WGAL News 8 wanted to do a story on Kole last night, but we said no, not yet, we aren't prepared for that yet. Cameras in his room...not sure about that because his immune system is down on account of the chemo. That's why everyone has to be so clean all the time....Besides, we had dinner plans! Thanks, Andrea, everything was soooo wonderful and we enjoyed ourselves immensely being out of the hospital for awhile. It was nice to meet the owner of Dafnos, John. This afternoon, we are getting ready to change diapers, read some books, and take a nap. Today we will also give Kole a bath for the first time since we arrived (besides the spongebaths). I think this will relax him. We love you all, and feel you all have been placed in our lives strategically by the hand of God. Thanks again for all your messages, they lift me up so high.

I had to miss a family reunion today and just wanted to let those of you who were there know that Kole and I were there in spirit. Thank you for all the wonderful food you sent and for giving my husband so much support when he stopped in. He said he really feels like a part of the family now and it really means a lot to him/us. We still didn't hear about the apartment, but think we will by Monday. It stinks that this will have to be such a quick move if we do end up getting the apartment. Thank you to ALL of you who volunteered to help us move, stand by your phones and emails, we may be taking you up on this!! Although our living quarters are small, we have garnered a lot of "stuff" through the last (almost) seven years we have been married and you know how that goes (clutter!). A Kole update...he is doing well this evening. He had a great dinner, hamburger, chips, and mandarin oranges. His heart rate is still quite high, and they are monitoring him closely not only because of this, but because his ANC (absolute neutrophil count) is very low, which means he is extremely susceptible to infection. I am learning all these new medical terms, bear with me. So tonight they gave him a GCSF, which is medicine that helps his white blood cell count come back up. Also, the gave him another vincristine injection, which is a type of chemo that he needs every 7 days at least for now. This makes his mucous membranes irritated, I think, because he can't stop picking his nose or the insides of his mouth, and he usually doesn't do this. I think he also has developed some sort of nervous issue, as well, as he is now a nail biter and never bit his nails his whole life. Anyways, he is watching Baby Einstein right now. He just got weighed, and he is still losing weight. So we are trying to fatten him up. Lots of Pediasure! I will do my best to keep everyone updated...I have been told that there are many people out there who look forward to hearing the progress of the day. Thanks for praying for Kole so diligently, he is on prayer chains in many towns and states and I am awestruck at the response we have received to our prayers. God bless."



Worked a bit on Koles face today, some spindles and the basket.  Had to take off from drawing for a few days to complete custom tie dye sheets, tapestries, shirts to finish Christmas orders in our shop.  (My method takes more than one or even three days to complete the entire tie dye process.)  But I am back at it today.  I missed holding the pencils and the scratch on the paper.  I've been thinking about how I accomplished my mission to draw more in 2014 and have been contemplating what I will choose for 2015. 

Dearly Departed Drawings ~ Kole {day 339}

June 20, 2008

"Today I had my first major meltdown. It was the first time I actually had to breakdown and call to talk to someone (August). It all started right off the bat this morning when I arrived at the hospital and was told that Kole had just vomited up his entire breakfast, all over the floor and daddy. Oh no, I thought, he really needs nourishment now and I just felt he got so cheated...he ate so well and then it all came back up. On top of that, the nurse said he wasn't allowed to eat or drink anything else for the rest of the day because he was going to be getting a lot of tests done. Right before I arrived and walked into the puke incident, his heartbeat had spiked and his respiratory rate had gone sky-high. I was told that he had a movement around the same time, and my mommy-gut told me that this isn't the first time he's struggled to "get-it-out" and I figured that's why he had the rapid heartbeat and breathing. But the doctors were worried and there were people running in and out of the room, and I got so freaked out. They drew blood and another parade came into the room, the echocardiogram guy showed back up and did another echo, which showed that the fluid around the heart went up again slightly, which could be the cause, but it really wasn't that much different from yesterday. Then we had to wait to get wheeled down 6 floors to the ultrasound area and they did an ultrasound on his neck and arms to see if Kole had a blood clot, but they found nothing. Then we went back to the room and Kole wasn't happy...So back to the drawing board, no one can quite figure out what caused this sudden spike. They are going to do another xray and echo again tomorrow (sigh). He puked the breakfast up at 8:30 am and he didn't eat all day. When it was dinner time, they still said no, and Kole was crying for juice and food. I got my way, and Kole finally grubbed out and kept everything down. Now he is happy in his room, watching Baby Einstein. His heartrate is still a little on the high side, but better than earlier, so I guess that's progress. I just feel better knowing he got nourishment today. He's well on his way to his next round of chemo and I just feel he needs to be built back up before they break him down again. Thank you to everyone who has left me uplifting messages, I have truly needed them today. Tonight I am going to get out for awhile and have dinner. I think it is much needed. God bless all of you for all of your love and prayers, this giant curtain of love is by the hand of God, and I know He is my son's almighty healer...."


Today I fixed a few things that were bothering me about Koles face.  I'm constantly shaping, shading and re-evaluating my work.  Adding and subtracting.  I often consider adding or subtracting journal entries.  Some of it is uncomfortable. It doesn't feel right to leave a single entry out, so I don't.  I imagine life was downright uncomfortable at that time for Kole and his family.  Maybe we all need this stark reminder to ignite us inside.  To remind us to be grateful with what we are given - some of us have less.  I really appreciate what Koles story is doing in my life.  Providing perspective.  Beautiful.

Dearly Departed Drawings ~ Kole {day 338}

June 19, 2008

This morning we had an unexpected setback. The doctors wanted to get Kole's double-lumen (port) in this morning, we signed-off on all the consents last night for him to have the surgery this morning. At the last minute, they decided not to do the surgery. There is too much risk for infection at this time. I am actually thankful for this, because we didn't feel he was ready for another surgery quite yet, not to mention the nervous anticipation I've been feeling in regards to taking him home so soon. They did another blood culture today, which came back negative for bacteria, so it looks like the antibiotics are working. We will be here for yet another week, though. The doctors are keeping him on the antibiotics which are fed through the central line in his neck, and they won't send him home with this type of central line. So, it looks like they are postponing the surgery until just before his next chemo. We will be here for a week, they will remove the central line, be home for two or three days, then back up here for another week of surgery and chemo. The good news is that Kole is still doing really well otherwise. Some milestones today...he had several smiles and even a giggle or two when I gave him belly raspberries. He ate a decent breakfast, lunch, and dinner. He is keeping everything down. His echo cardiogram showed that there isn't as much pressure on his heart, and the extra fluid he has surrounding his heart has gone from moderate to small. They stopped his breathing treatments, they want to see how well he does without them. We got a wagon from Child Life and Kole went for a wagon ride for an hour, he loved it. I kept circling the hallways, because my mom saw the Jon and Kate plus 8 family (from the tv show!) and crew when she was getting off the elevator this afternoon, I was hoping I would catch a glimpse, but didn't. So much for rubbernecking. Today I got Kole down off the bed and held his hands while he took several steps toward me, he was shaky but did great. We are planning on possibly watching a movie and giving Kole some exercise this evening.  

We had a few impromptu visitations today, thank you for all your prayers and concerns and love. It is so nice to see familiar, caring faces, I don't think you even realize....

 Right now Kole is finishing up a good meal and the nurse is wanting to do a vitals check. I plan on giving Kole his favorite dessert, icepops, after he is finished eating (chicken fingers, corn soup, mashed potatoes, and Pediasure). Thanks be to God for all Kole's small accomplishments today, what a beautiful day. Thank you all for your love and support and prayers and inspirations, thank you to all our friends and family and even to those of you who we've never even met and are pouring in constant love and prayer. I can't get over all the compassion we've been shown, thank you from the depths of our hearts.

Today was more shading on Koles face and hair.  And of course more work on the spindles.  The holiday dash is on to finish customer orders, secret santa and secret sister gifts, Christmas cards, cookie baking and two bedsheet quilts for my kids.  Grace chose my old Strawberry Shortcake bed sheet for hers and Maggie chose a Pocahontas bedsheet for hers.  (I save and/or collect character flat bed sheets to make quilts)  The apple did NOT fall far from the tree and I am so proud of their choices!!  (other choices were Peter Rabbit and Care Bears)

If you missed the Thanksgiving photos of Kole and treasured memories of Kole here is the link to yesterdays post.

Dearly Departed Drawings ~ Kole {day 337}

Me: Won't you share with us some of your most treasured, happy memories of times with Kole?


Renee:

Thanksgiving 2006

"If I could just hold him again and smell him.

"My happiest times with him were the mundane times. Waking him up, getting him dressed, putting him to sleep. He was my little mockingbird. As long as he was near me I was ok. Always wanted to do what I was doing or eat what I was eating.

He loved Lightning McQueen and Nemo. He loved Thomas the Tank Engine and all things train-related. He loved to go to Strasburg Railroad.

He loved to run. He was a fast runner. I used to have to run down the hospital corridors chasing after him with his IV pole on wheels, praying to God he didn't get too far ahead of me and pull his tubes out of his chest. Happened once. Nightmarish.

Thanksgiving 2007

His laugh was infectious 

and I wish I could have heard it far more frequently than I did near the end. He loved to blow bubbles and he loved bath time. I'm certain if he had gotten the opportunity to see the ocean and the beach, he would have loved it just like mommy. He loved to eat. Eat eat eat. He liked to play in the big leaf piles and throw freshly cut grass around. He liked to go down sliding boards, multiple multiple times.

Thanksgiving 2008

When he would fall asleep, he would play with the mole on my chest, fidget with my earlobe or twist my hair with his little fingers. He loved to hold hands. 

He loved to snuggle and he hated to see anyone cry."

Today I shaded his face and hair more.  I started adding dimension to the crib spindles and adjusting tones as well.  Making good progress.  The most adorable little boy.

Dearly Departed Drawings ~ Kole {day 336}

June 18, 2008 

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

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

I love you all so much. So does Kole.

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

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

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



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

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