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. 

Dearly Departed Drawings ~ Kole {day 333}

June 17, 2008

"We decided to spend Kole's first, alert night in his new room with him. We couldn't stand the idea of him waking up through the night with strange people and noises and blips. We didn't really get good sleep, though. The room only has a cot, and we had to share it (smashed in a ball). They came in bright and early to do rounds and vitals. The oncologist on call this week, said his lung doesn't seem to be draining nearly as much. They have ordered an xray to see if there is a clog, but we are praying that it is because there just isn't as much in there. This morning I have to say his appetite seems to be back. So far, he has had several handfuls of Cheerios (by himself) and 3/4 of a fresh banana (by himself). Also he is chugging back the juice. I am keeping close eye, afraid it might all come back up, but so far its staying down. Today we pray the echo comes back good, the xray shows no clog, Kole gets some strength back, and that nasty tumor is shrinking. Thank you for all your prayers. Kole lays in his crib at night and gently whispers into the dark, just talking to himself (?). Perhaps he is seeing/talking to the angels you all have prayed for to come watch over him. Thank you and we love you all.

Kole just started running a fever, not terrible but enough to make us worry. They said we should start to see a drop in his immunity this week following the chemo, it is scary to think it is happening so quickly. They just gave him Tylenol and we hope that's all he'll need. They also drew some blood to make sure nothing's "brewing" on the inside. Kole is still doing considerably well, although today he is very clingy and whiny and seems to have a shaky tremble. We are all concerned with his drop in weight as well, my fat boy just looks so skinny. I am being told this is all a normal response to the chemo. I just had a meeting with a woman from Child Life, and she brought us some activities, books, games, movies, and bubbles. Kole loves the bubbles. He is watching Cars right now with his daddy, and we hope he will take a nap soon. He has stimulation overload, people just keep coming into the room, mainly to talk to me.  The best news I have had all day though, is this - our good friend William Seiler, who I have to credit with drawing our attention back to the lump on Kole's chest in the days preceding his diagnosis, has been working night and day to get a charity fund started for Kole, and it has paid off!!! We are happy to announce that we have a formal, lawful charity fund set up in Kole's name through COMMERCE BANK. It is called the KOLEBEAR FUND, and anyone wishing to donate may do so at any branch of Commerce Bank.  Also, if you wish to donate and can't make it to the bank, William will come to you.  He is working tirelessly on getting posters and flyers and donation cans set up to pass around the community. Another exciting event today was that we got asked to speak at a giant Ronald McDonald House gathering which was held earlier this morning. Regional McDonald's branch owner/operators gathered today to present the Ronald McDonald House with a check for over $60,000 dollars to help expand the house, and we got to be part of it by getting up and telling our unique story. So many wonderful things are happening, I am at a loss for words and know that the hand of God truly is upon us. Thank you all for everything you've done and are doing and we love you and God bless you all!

Kole just isn't himself. It is hard for us to see him in this sort of deteriorated state. It's like he has regressed. The nurse assured me this is just because he has been laying around in intensive care for a week, but I don't know. It's like someone reached in and stole my son's personality/soul right out of him. He has developed a sort of nervous shakiness about him, his hands don't stay still, they just keep picking at everything. Part of this, I'm sure, is boredom, and some is sleepiness, but part of me is afraid it is something worse. I don't know, we are all so sleepy I am afraid we may be neurotic. We try to be strong for Kole but can't help crying behind closed doors. We went for a drive this afternoon while Kole napped and found a batting cage, and we hit a few. I wasn't into it at first but then found it therapeutic. That's worn off now though, back to reality. I miss my family and friends and the regularity of my old way of life.

I can't wait to see you all tomorrow who are visiting. Thank you for your love and prayers, whether near or far. We appreciate all your correspondence."

Today I worked a bit more on Koles face and hair, shading, adjusting tones.  Also more slow work on spindles and a bit of shading on his shirt and hand.  I had hoped to share a Thanksgiving photo of Kole and a special memory with everyone on my Thanksgiving blog post but Renee was having some technical issues.  Eventually we will get to that part too, as often as Renee shares the memories with me and allows me to share with you.  Many times Renee made multiple updates in one day and those are the paragraph breaks.  Seems fitting to share the entire day with you rather than break up the updates over a span of days.  And I love highlighting how appreciative Renee is for visitors and supporters  - you just never know what a few kind words, friendly gestures, home cooked meals and/or smiling visitors can do for people.  Be love, spread love.

Dearly Departed Drawings ~ Kole {day 332}

June 16, 2008 

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

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

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

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