Dearly Departed Drawings ~ Kole {day 365}

August 29, 2008

"I gathered up my life in bags on Sunday night, anticipating Monday the 25th as another admission for chemo, a week up at Hershey. Kole has always bounced back so wonderfully from each round, even though he is on a compressed chemo schedule, meaning, he gets more in a less amount of time than most children. Monday morning, though, after we waited and waited for our blood results, I was told the bad news. Kole's numbers were way too low to get round 6 underway. They said it was only a matter of time, that it was expected that this would eventually happen during a compressed chemo schedule. Also, he is fighting a cold, they said that could be interfering with his counts coming back up. So they sent us home to keep Kole well until Thursday. We got here yesterday and the counts looked a little better, good enough for admission, so we finally got our room. Then, Kole spiked a fever. Plans cancelled again. They took blood cultures and we are still waiting for the results, to see if something is "growing". In the meantime, the fever is under control, and they took him off the fluids they put him on last night. They said if things stay negative, and the fever stays away, we may be able to begin round 6 chemo (Ifos/VP16) tomorrow. Looks like more time in the hospital than anticipated, but God on our side, we will get through it!

I hold my husband up in prayer today. Lord, I ask that You would permit a healing for him and for my entire family as we are truly struggling. My husband has been fighting his CVS syndrome since July 25th and has missed a lot of work and has missed out entirely on helping to care for Kole. He is going to lose his job, but all he wants is to be well and serve You in a daily routine he hasn't seen in over a month. Lord, I ask that the prayers of the thousands who are on our side be heard, and that his body be healed in Jesus' name. I know You will see our family through this, Lord, for You love us and came to heal all our wounds. I have truly seen your Hand over my son, Your healing has been truly miraculous. Thank you God.

My husband has had a lot of medical attention himself these last few weeks. Due to the nature of his illness, with it's ups and downs and uncertainties, I haven't made it back to work yet. Every time I think I know some definite dates I will be available, just for me to get into a routine for myself and go have fun and cut hair, he relapses. He relapsed yesterday again. Please pray that the blood work, urinalysis, fecal exam, upper endoscopy, and MRI of the brain all come back okay. If these studies are all negative, he will be able to finally start a treatment program up here at Hershey. Sometimes I think I should just move here, to the hospital. Looks like I am going to be here even more than I thought.

I had another meeting with the doctor regarding Kole's progress. She reexamined the CTs she showed me last week and said she feels the shrinkage of the tumor is actually more like 60% shrunk. AWESOME! Thank you God. We are talking surgery now. If and when we get round 6 done, there will be 2 more rounds through September. Surgery is looking like beginning to mid October. Please pray with us that we can keep on this schedule. Also pray for a complete resection, as this is Kole's best chance of survival. The doctor sent a chunk of Kole's biopsy off the Mayo Clinic, and miraculously, they found no evidence of PAX3 or PAX7 in the tumor. 90% of all alveolar rhabdomyosarcoma tumors are PAX3/PAX7, and they present a very poor prognosis. It is extremely rare to find an alveolar tumor that isn't PAX3/PAX7, but Kole's ISN'T, and so, once again, he is our rare, wonderful, miraculous boy. I hope you find this information as heartwarming as I did. I know after all the tears I cry, it was so nice to cry happy happy tears. Praise God. Help us pray for a continued shrinking tumor, wisdom for the pediatric surgeons, healing blessings for my husband, and strength for me, mentally, physically, and emotionally. This has been the hardest month of my life. God bless you all."



August 30, 2008

"I finally got to meet Dr. Neely today. When I signed consent forms for Kole's tumor to be sent out for more study, this man's name was all over everything and he seems to be the "big cheese" around here. He is a very nice, gentle man and I am so glad he was on call this week so I could touch base with him at last. He gave us some bad news/good news. The bad news is that one of Kole's blood cultures came back positive for bacteria. That accounts for the fever. The good news is that Dr. Neely seems to feel that, with continuing the antibiotics he is being given, that we can still begin round 6 chemo!! They will continue to do blood cultures everyday until they show negative, then stop the antibiotics. In the meantime, they are prepping Kole for round 6 (loading him up with fluids) to begin tonight! Finally. This was supposed to start Monday and I should be home by now!! Oh well, what's a few more days up here, anyways. If all goes well we should be outta here by Thursday or Friday. Anyone wanting to visit, just let me know, since I'll be here for quite awhile yet.

My husband hasn't heard one way or the other about his job yet, and we still don't have the results of all his tests, so, nothing new in that sense.

As always, thanks to all of you for your continued prayers and support. You are helping smooth a bumpy road I otherwise couldn't make it down."


August 31, 2008

"Turns out the positive culture was a staph infection, although the strain is very treatable. Kole is doing well and seems a very normal toddler most of the time. He continues to eat and drink and respond well to all. This is a very hectic weekend here at the hospital. The weekends are worse here than the weekdays as far as care goes, they are spread thin and I wonder if the holiday weekend won't help matters. But so far, we've managed to pull through! Still waiting for them to bring me a highchair, though.... Kole had a couple visitors yesterday, and I just want to say thanks so much for coming and for your gifts. I don't think people understand how awesome it is for me just to see familiar faces. It's like "Hi! Oh my there's PEOPLE! hugs"

I haven't managed to get ahold of my husband yet today, and I am saddened because this is our 7 year anniversary today. I miss him so much. We still haven't heard here nor there about his job.
Well I must be going. I have a Child Life volunteer in the room just for a few minutes so I could run and do laundry and update my page, and I have a phone call or two to make while I actually can. God bless and have a beautiful holiday weekend. "



Today I focused on the spindles again, Koles shirt and other parts of the crib.  This is probably the most detailed portrait work I've done to date.  There are so many patterns, textures and tiny details.  You know I have to draw every single one.  Every last teeny, tiny, itty, bitty, square will be drawn.

Today is officially the last day of 2014.  While I did not "draw every day"  I did draw 192 days out of 365 which is just over half.  Nap time is all I am afforded for drawing time.  I do have after bedtime but really nothing can beat actual daylight to draw.  Some days are only an hour or less of draw time and other days are 2 hours.  Still something to be proud of and I completed four portraits with the fifth over halfway done.  I also healed a few people, made some new friends and amazed myself in the process.  Most of my friends and family weren't aware of my talents and I hadn't used them in so long I wasn't even sure how things would progress.  I am very happy that I followed my intuition that day January 7th, then continued afterwards to draw for others.  I find great joy connecting with people, learning about their departed loved ones and drawing portraits for them.  I choose portrait subjects as they are presented to me and draw them in an order that is found through meditation and intuition.  All my portraits have inspired deep emotions and feelings to create - this is how I am sure I am meant for this work.  I went uninspired for many years and closed the door on my drawing.  2014 was an enlightening year for me filled with TONS of messages and signs I am headed down the path laid out for me.  I look forward to more portraits in 2015 and even some requests.   Bring on 2015!

Dearly Departed Drawings ~ Kole {day 364}

July 25, 2008

"Kole has maintained this week. The home nurse came yesterday to do blood counts and we got the results this morning, things are pretty low on all counts. I am happy to report that although his immune system is destroyed, he never got sick like I thought he might, perhaps it was allergies, they mowed our apts. We are able to stop the injections for the weekend, so that will be nice for Kole not to have any trauma inflicted upon him until Monday. All things remaining the same, I believe we will bring Kole to the cut-a-thon, at least for a portion of it. I hope it won't be too overwhelming, but knowing our social butterfly, he'll be fine. Our doctors are prohibiting us from large crowds, so we may have to keep a distance at times. We can't be sure everyone will be healthy. Words escape me to say how much we are grateful for all the fundraising everyone has taken upon themselves to do for us. Money raised will be used for things like utilities, gas for commuting, new tires, insurance, food, and even our rent.

Thank you so much from the bottom of my heart for allowing me to continue to stay at my son's side through everything. He needs me so much. God bless you."

August 1, 2008

"The days are passing so quickly, I myself can't believe it's been since the 25th that I had a posting. First I just want to say a great big universal THANK YOU to everyone, I mean everyone, out there who has helped us through the last few weeks. The Cut A Thon was a huge success, thank you to all my fellow coworkers who took time out of their busy schedules to come in on their day off to raise money for us. I was thoroughly floored at the response we had. I wish I could write thank you notes and personally hug everyone, but as circumstances are I just haven't found the time and hope you will accept my sincere mental hugs and thank yous. God bless all of you. Kole had a great time and enjoyed seeing "baby" and "mommy" on TV! Also thanks to everyone who has supported us by buying sandwiches for the sandwich sales, and tickets to the basket bingo, which is sold out!

I would like to update everyone on how the week has gone so far. After arriving on Monday morning, Kole's blood looked great and ready to go for round 4 chemo.  The doctor and I had a meeting about what she decided on doing for this round. After speaking with the Rhabdomyosarcoma specialist at Mayo Clinic they decided the best thing to do for Kole is to try the Ifosfamide/Etopiside treatment again. Apparently this stuff is good stuff, and worth another shot, especially for his type of tumor. So, the big thing now is to prevent another Ifosfamide neurotoxicity. Kole has been given the methalyne blue on a regular basis, every 6 hours. It makes his pee and poo green/blue. It is supposed to help keep Kole from experiencing the poisoning effects he experienced last time on the Ifosfamide, and so far, I am happy to report, that it's working!!! Kole only made it through 3 treatments last time before they aborted the plan, and this time he has already gotten 4 treatments and is doing just fine! The 5th and final Ifosfamide drip will go into him tomorrow morning at 1:30am and after making sure he is well hydrated, I think we may be able to come home tomorrow night. It depends on how his blood counts look, right now he is really anemic and slightly neutropenic and will be getting blood transfusions today and tomorrow. His attitude remains wonderful and he is still happy and maintaining, although a bit tired and whiney, too, but that's to be expected. Lots of naps are needed because they keep him up all night giving him the chemo through the night hours. Last night we had a pretty big scare, Kole fell and cracked his head on the hospital floor. A giant lump grew on the back of his head, but after some Tylenol, he is fine. They are monitoring his neurological function every 4 hours now instead of 8 (sigh). He is still eating well and drinking well. The nurses joke about how heavy his diapers are.

I have learned also that they want to do a CT scan on August 11th to check to see how much Kole's tumor has shrunk. I am excited to see the results. Please keep praying for this tumor to shrink in the name of Jesus. That same day we will also get readmitted for more chemo. They are hopeful that this tumor will shrink away to the point where surgery won't be necessary. They said surgery recovery could take away from Kole's ability to receive more chemo, and the chemo (systemic KILL) is most important now. Chances are some surgery will be necessary at some point. They are also wanting to hold off on the radiation as long as possible, because Kole is so small, they want him to grow as much as possible. It may be months and months to a year before they radiate. They said radiation can compromise lung function and has so many bad side effects....
Well I must get back to the room now, I am sure Kole wants his mommy, I am here by myself w/ some help from family and friends. Please pray for my husband as he fell ill last Thursday (the 24th of July) with a stomach episode. Both my boys are sick and it feels so unfair sometimes, but the Lord is with us."

August 12, 2008

"We made it through round 4 chemo without a hitch, well, almost. No neurotoxicity to speak of from the Ifosfamide and we were able to go home from the hospital on Sat the 2nd for 8 days! Yay! While at home, life went on pretty much as usual - hectic. Besides taking care of Kole, which is itself a full time job, we got a lot of things done around the house (many more boxes unpacked) and also got our new pediatrician arranged in the meantime for when we need to utilize a doctor for a "minor issue" i.e. Not Hershey. I got all my bills paid for the month - Thank You Jesus for the financial blessings, everything got paid!! Thank you all so much for helping us while we are caring for Kole! I also had to get new tires for my truck. Ugh. A highlight of the week was the basket bingo in Emigsville went wonderfully, thank you to all who helped out and William for "walking the bingo aisles."
Enough about the other stuff, Kole is doing great. We had a vomit episode last Tuesday, but that was it. No fever. Good appetite. Then the blisters started. First on his thumb. Then his other thumb. Then a middle finger. Then both big toes. Then the bottoms of both feet....I called in the middle of the night and, of course, trying to describe blisters over the phone is pretty much a crapshoot and I got the terms "herpes" and "chicken pox" and "hand foot mouth" thrown at me (AAAHHHHH!), but after examining him, they are, in fact, Chemo Blisters, not from the Ifos but from the VP16 (etopiside). The ones on his hands are healed by now, but the ones on his feet are still quite fresh. My biggest concern on finding them was that they might get worse and it may delay chemo. But they seem to be doing fine, keeping them uncovered and applying Bactroban. On top of this, at about the same time the blisters started (during really low blood counts) he got a severe diaper rash. That is in check now, too, with a little Nystatin cream and frequent diaper changes.

My husband was sick for 12 days (25th through 4th) with a stomach episode, then he was healthy all week from Monday through Friday, then relapsed on Friday night. He is still trying to get over the hump. Please keep my husband in your prayers, as he cannot be with us, again, for this week's round.
Kole and I arrived at Hershey Monday morning at 645 ready to go for a sedated CT scan. He did awesome and got an icepop afterwards. Then we proceeded to the clinic for our usual Monday, vitals, waiting, blood drawn, waiting, waiting, waiting, then finally get called in to talk with the doctor. She asked me to step into her office, which is unusual. I had a feeling of dread, you know, that they kept me waiting all afternoon for a reason. She pulled up the images of Kole's CT for me on her computer and placed them next to the old CTs that were done when we first got here in June. I almost fell over.

Kole's tumor has gone from approx 10cms to approx 5.7cms!!!!! Almost in HALF!!!! 

Praise GOD!!!!! I started crying, I just felt the prayers everyone has been saying flowing through me and I was just so so so happy.  She didn't say whether or not this is more or less shrinkage than expected, only that it is a very very good thing. Especially considering we've only had 3 full chemo rounds (round 2 was aborted halfway). The tumor has pulled itself downward, which was expected. The heart and lungs look great, free and clear. The espophagus and trachea are back where they should be. The tumor looks like a ball now instead of a spider. It is sitting low, on the liver and diaphragm, and we're still not sure whether it originates from diaphragm or chest wall muscle. But it has collapsed inward on itself, and our CRNP, said she believes the center of the tumor is "dead". After all this awesome news, what's next? Well we are receiving round 5 chemo as we speak. We should go home this Thurs the 14th. Friday the doctor is presenting Kole's case to the tumor board, and they will throw around ideas about proper timing for surgery and radiation. She said they may also try to dive into what's left of the biopsy tissue and verify which alveolar type Kole has (yeah, there's more types). But this will be helpful in our figuring our plan from here. Next Monday we come back in for one more day of chemo plus an echocardiogram to make sure the chemo isn't affecting Kole's heart. 

I hope you find the new news UPLIFTING and worth the wait. I want each and every person who reads this to know that we couldn't have come this far without you, your prayers and deeds have been strong and miraculous for us. God bless you all. 

 I have been keeping to myself a bit more than I am used to lately, I apologize to those of you who haven't heard from me in a couple weeks. With my husband sick, I am all that's left of what used to be a healthy young family of three, and it drains me. I pray every night that Jesus keeps me strong and so far I have been making it through every minute, but don't have much left over after that. The Lord is awesome, though, some days I don't know how I'll ever make it, but I always do.

Time to go to bed now. I have to be ready for another beautiful day with Kole. I am crashing here at the hospital since my husband isn't here, there was a waiting list over there at Ronald McDonald House 9 families long and I just couldn't bring myself take up a whole room for just me. Just to let everyone know, also, that I am not talking on the cell phone much during the day for now. We just got our last bill and whoa nelly, we've been talkin. We do have a house phone now, finally, which I use more, so if you'd like that, please just let me know.  Good night and God bless you all - He hears our prayers. 

God bless all the sick children"

Finally back to it today, I fully planned on drawing through Christmas up to today.  Somehow plans with family, seemed to merge into my drawing time.  It is okay though.  I really needed the break to refresh and prepare myself for the upcoming year.  I went to a Bethlehem Star Meditation on December 23 and it was very beneficial.  I am attending a crystal healing class coming up just after the New Year that will also cleanse things and clear them out for me.  I really feel it is important for me to release, I have such a hard time with that aspect of life.  I tend to hold onto emotions and feelings much longer than I should.  I am really looking forward to the New Year and a fresh start.  My intent for 2015 is balance.  I will be working on finding a balance with my home, husband, children, business and drawings - and of course within myself. 

Today I worked on darkening Koles hair, fixing up his pointer finger (still not entirely happy with it) and cleaning up the spindles.  I still see work on this drawing into 2015.  I had hoped to finish up this portrait in two weeks, but I am not going to push through and rush.  Everything happens when it is meant to and maybe ending this portrait later than I originally intended is for the best in more ways than just one. 

I am super excited to tell everyone that I will also be adding Lucia to my list of portraits.  I will be soon setting up a custom portraits listing in a Storenvy shop I am setting up just for Dear Departed Drawings.  I will be taking orders one at a time, so it will be first come first serve.  I will also move the prints of drawings into the new shop for purchase there and all future prints as well.  I am still meditating and praying about the cost of these portraits and the final decision has not yet been made. 

And this is probably the longest post I ever made on the blog.  Thanks for reading to the bottom (or at the very least skimming to the bottom)

This Year and Next year

This years resolution was draw more, I'm leaning towards balance for 2015.  This year was quite a struggle for us.  My husband was laid off in February and unemployed for seven months - we only received unemployment for five of those months.  He was employed part time, as he worked a full time and part time job to support our family before he was laid off from his full time job.  We did receive food stamps but $200 is not enough to sustain a family of four eating healthy foods for a month (or really any foods for that matter).  I frequented all of the food banks in our area to feed our family.  If there was anything more embarrassing then standing in line waiting to receive a box of food (mostly processed, lots of candy and cakes, little to no toiletries as in the way of toilet paper, toothpaste, deodorant, etc and a very small amount of protein - your choice of a pound of hamburger or a package of sausage, a carton of eggs if you are lucky and a handful of veggies.).  Food stamps do not buy anything but food - we went without a lot of things, we could barely wipe our asses.   Local churches bought our kids some gifts last Christmas so we would have something to give them and we were also blessed with gift cards and groceries from these services as well.  The ladies from that church also handmade a beautiful quilt for Maggie that year - a beautiful reminder of kindness and generosity.

In August my husband severed his part time job to flood the market with his resume.  His part time job was constantly changing his hours, like just hours before his scheduled or not scheduled shift.  This made it nearly impossible to make it to interviews and go out and apply for jobs.  He was working for pennies and barely made enough to cover gas money.  Now completely unemployed, the gov't upped our food stamps to a ridiculous amount, but we felt relief at the same time on the food front.  Now we had an over abundance of food and the inability to pay our bills.  Thankfully my mother stepped in and payed TWO months of our bills.  She also continues to fill in the gaps and help us when needed to get back on our feet.  My husband is now gainfully employed since October, however since he is just starting out the pay is very low - so we are dependent on our Etsy Shop to make ends meet until he receives a few raises.  The gov't has taken back most of our food stamps again, but we are grateful to have any help buying groceries.  I've worked since I was 14 years old, my first job at a summer camp, but a job none the less.  I've always been able to support myself.  After being married we combined our awesomeness and were well off - better off then I ever could have dreamed.  Then after deciding to stretch pennies, we knew it would be tough - we decided I would stay at home with the kids.  We weren't counting on my husband being laid off from his full time job of six years.  I don't know how anyone ever lives off welfare and food stamps, we sure couldn't.  While some may take advantage of the system, we did not.  I finally feel confident sharing this part of our story with you because we are hard workers and paid into that system for many years that did exactly what it was meant to, gave us a leg up when we needed it.  I cannot wait to get fully back on our feet so we can give generously back to all the social services, food banks, friends and family that helped us out when we were pounding sand and feeling hopeless.  We suffered much depression and sadness during those months.

But the month of December has been full of abundance.  We have made enough this month in our Etsy shop, enough to cover our bills!  A friend swapped cookie dough for tie dyes which allowed me to spend more time pumping out orders.  Now we can get the cookie dough out of the freezer, cut, bake and decorate - instant cookies, no mess and still fun for the kids.  Another friend gave us FREE tickets to see one of our favorite musicians - Keller Williams.  We found an overnight sitter (thank you sweet niece of mine) so we can have a night out - only our second one this year!!  I was able to raise enough money to purchase an ipad for Dear Departed Drawings since the one I use is on loan.  Then my father decided to generously gift me a tablet.  Now that money can be set aside for any other supplies I might need, the money raised will be honored and only used for the higher good in my Dear Departed Drawings.  From another friend we received a care package filled with toiletries, snacks and food - dropped off at my doorstep.  Brought me to tears how generous our friends and family are - trying to keep us out of major debt, from going to food banks, making sure we have tissues (Lord knows we need them) and even giving us a night out to see a favorite musician.

We have lost a handful of friends this year and last from this earth.  We are missing half of our families that have already passed on.  Our parents do not live close by (my mother is close) and our dearest friends are also far.  One day we will be heading towards our dear friends in the mountains.  I am filled with joy that my husband finally has a job he LOVES!  Umm who wouldn't love making beer all day?  My drawings fill me with love as I see how much love and light they bring to the recipients.  I love getting to know each drawing subject on a soul level.  This year has been filled with enormous sadness and full of joy.  So many ups and downs.  Who knows what next year will bring, but I am hoping balance is found in the new year.  Thank you to everyone who brightened our lives and helped us this year.  I hope everyone has a wonderful Christmas filled with cheer and love as we remember those who are missing and celebrate with our families. Because today is a gift, that is why it is called the present.  And there is no greater gift than your presence.  People cannot be replaced.  Turn your love light on.

Dearly Departed Drawings ~ Kole {day 355}

July 17, 2008

"We managed to get everything done that we needed to as far as cleaning on Wednesday night and we came home without a hitch, just exhausted. We are all happy to be back, and facing the reality that there is still much to do here. I am happy to report that we finally have the internet up and running, after 7 years of marriage, we are finally online. I can't believe it, hallelujah. It is truly a source of therapy for me these days, to be able to type out my frustrations. Kole is still responding well to the chemo. I don't think his levels are dropping yet, although he did seem a bit pale today, his energy level was still great. It was too hot, really, to be outside for long, so we stayed in, mostly, and played cars and trains. He ate pretty good and no pukie episodes, he is still on the anti-nausea meds for now. Tomorrow we start the injections again, and the neighbors will get another one of Kole's lung tantrums. The next few days will consist of hanging out and watching for his levels to drop and waiting for Monday, when we go back to Hershey for a vincristine push (outpatient chemo), dressing change, and possible labs. He stays on the antibiotics all weekend as well. I am enjoying his energy while I can, I know it is only a matter of time. Good night, and God bless."


July 22, 2008

"First of all, let me apologize for yet another delay in updates. Since we have been home, I have been fighting off some depression. I know many of you are interested in visiting, and I have been slacking in that respect. Lately I have been wanting to just be alone with Kole, and enjoy him at home, in a simple life, one we don't really see anymore. I hope you understand, and Kole should be well enough by week's end for more visitors. We plan on attending the cut-a-thon Sunday, and can see you there, also. Yesterday we went to HMC for some chemo, blood work, and dressing change/flush. I received some "worse" news while I was there, I say "worse" because it's all bad. Back in June when this mess all started, we consented to having extra biopsy tissue and bone marrow donated to the Children's Oncology Group for further study. The Childrens Oncology Group (COG) is an international research group that consists of more than 240 hospitals in the US, Canada, Australia, New Zealand, and Europe that treat children with cancer. They combine their efforts in an attempt to eradicate pediatric cancer, they share information with each other so that all children get world class care across the board. To put it frankly, you wouldn't want your child with cancer to be seen at a facility that doesn't participate with COG. Hershey does. The COG contacted Hershey recently and confirmed that Kole does not have the embryonal form of rhabdomyosarcoma as we were told. He has the alveolar type, which is a worse prognosis than embryonal. Alveolar rhabdomyosarcoma is more aggressive and harder to treat. It also tends to be more recurrent. This will mean, for us in a nutshell, that Kole just has a steeper mountain to climb. The doctor said that initially, when we thought he had the embryonal, we still chose the most aggressive course of treatment. So we haven't lost anything as far as early treatment. However, this may mean definite radiation. It may also mean having to go through the ifosfamide experience again. Apparently it takes a lot to kill these alveolar cells. But Kole's going to do it, we're sure you wouldn't expect any less from him.  The doctor told us about a colleague of hers out at the Mayo Clinic in Minnesota, she specializes in rhabdomyosarcoma, in particular, she is the national chair of the intermediate rhabdomyosarcoma study group, which is exactly where Kole falls. I was excited to hear that her knowledge will be tapped for my son's care. She sounds amazing, I looked her up on the web, and she has published many pertinent findings. I am not ruling out the possibility of a second opinion at this point, I have to see what insurance will cover first, although we have been pleased overall with Kole's care at Hershey. He is, considering, doing wonderfully. There is a doctor out in Philly who also has a rhabdo specialty, so that may be an option. Thanks everyone for the clothes for Kole, he looks soooooo handsome and well dressed. Gotta go, now, Kole needs juice!"


July 24, 2008

"Since Monday's chemo, Kole has been doing well at home. We were a bit concerned that he was coming down with a cold this week as his counts were low, he had a slightly runny nose and sporadic dry cough, but it hasn't amounted to much of anything.We did play it safe though and haven't been out much or had many visitors. Access denied! The last thing we need right now is for him to get sick which could delay the next round of chemo scheduled to begin Monday. I hope and pray we can just stay on track, with this regimen being as aggressive as possible and not miss any more chemo doses. God has seen us through to this point and will continue to., I have no doubts. I can't deny I am worried about this week's chemo, though, it's the week they replace the Ifosfamide (chemo he reacted to) with a new chemo. And it's our "long week". I am sure enjoying the time here at home. I have let some things go around the house occasionally and don't feel guilty at all, it's so nice to just enjoy Kole. I'll end tonight by saying thanks again for the outpouring of love and prayer, thanks for understanding our need for peace and privacy, and God bless"

"I'm working on turning my story into a book to help others. 

Amanda has reignited the flame for me. I shoved everything down inside me for six years. 

It's time now. Kole is coming back to life in a new way."

 Still working on that wicker basket.  Trying to get in the Christmas mood.  Today my oldest daughter looked up at me while we were cuddling on the couch and asked me if I was her family.  Yes, I am your family and you are my family - this is our family.  <3

Dearly Departed Drawings ~ Kole {day 354}

July 14, 2008

"Good evening...Kole is playing contently with his new Thomas the Train track and railcars daddy picked up at a Walmart bargain. This evening has gone rather smoothly, with Kole eating a decent supper and still drinking well. He had his vincristine push, and also is finished with the cytoxan already. They are continuing to give fluids and mesna to protect his bladder. He is now on the 48 hour doxorubicin drip, which stinks, regardless, but even more so because he is pretty much stuck in one spot attached to a pole. Not such a great range for a 20 month old. But we are dealing, like we do. Thanks so much for the messages tonight, I realized after I read them and my spirits were lifted so high, how much I missed them when I was home. I know they are there in mind and spirit, but it just feels so good to see them and soak them in everyday. Thanks for loving us so much. With all the obstacles we have been facing, we still feel so blessed. I have to get baby bear ready for bed now, teeth brushing and soforth. God bless."


July 15, 2008

"Putting Kole to bed last night turned out to be more of a feat than anticipated. Since all this hospital chaos started, he has developed separation anxiety issues on top of fear of the crib, which is normal for a child going through this, just not what I am used to from my normally independent toddler. But by 1am he finally laid down quietly and gave mommy and daddy the opportunity to get some rest ourselves. This round of chemo is going really well so far. There haven't even been any behavior changes, he is still eating really well, no nausea, and the classic side effects seem to be at bay, at least for now.

We are enjoying our "old boy" back! 

He is happy and smiley and full of energy and lots of new words. 

We started a log book of all the words Kole can say, and we're up to 60, so we feel he is doing really well. The doctor came in today to speak with us about anything and everything, as usual. We asked about what they've decided to do for the next round, and apparently, she feels that giving Kole more ifosfamide isn't really in his best interest. She said that normally it is older pediatric patients that experience the adverse reaction to the ifosfamide (that's my boy! the rare one!). Another option is to replace the ifos. with cytoxan, which he gets without a problem. So that is what they plan on doing. She would rather replace the chemo and have him be able to get a full round in, instead of not making it all the way through the recommended 5 days (with the ifos, he lasted only 3). She said they may try the ifosfamide again at a later time if necessary, but for now, the cytoxan is in the same family of drugs, and a safer bet. So I trust her. She is really pleased with Kole's progress. They intend to do another echocardiogram soon to see how far the tumor has pulled away from the heart, but they won't do a CT to check the tumor size for probably another month. She wants to limit the radiation exposure. She also said that Kole probably won't need radiation at all (hopefully). "


July 16, 2008

" Finishing up on what I was trying to say last night....It is such good news to hear that radiation may not be necessary. I am under the impression that they try to limit the radiation exposure for children as small as he is. The doctor explained that she has had several Rhabdo-kids in her experience here, and all of them have had tumors like Kole's (embryonal rhabdo or ERMS) which have responded so well to the chemo that there was no further need for radiation. She expects Kole's tumor will follow suit. Seems these fast growing tumors are typically fast to shrink as well. One optimistic story she gave us was about a boy who had a tumor just like Kole's, but in the lower abdomen, and he also had cancer in his marrow and throughout his body. She said after his chemo protocol was finished and they went in for surgery, there was hardly anything to remove and they never needed to radiate. This boy is still cancer-free and doing well. She said all cases are specific to each child, as each child is an individual. But at least that gives us a lot of hope that this thing is going to SHRIVEL UP like the desert and BE GONE!!!! We spoke with her about the surgery, my husbands father has been pushing the issue of how skilled are the pediatric surgeons here and have they done a surgery here like this before? She said that she has worked in many institutions through her career, and the surgeons here are the best she's worked with. She said they are board certified and have 4-star rankings (whatever that means) and removing tumors is what they do day in and day out. She said that even though this is a teaching hospital, not to worry about students being directly involved in the procedure, they may stand by and observe but won't be participating, only the most experienced surgeons will. She is excited to see the next CT, although it won't be for 3 or 4 more weeks, to see how much the tumor is shrinking, to see how much relief the surrounding organs are getting, and to finally see the origination of the tumor. Hopefully we'll just have a tiny little lump/stalk to remove. I feel very optimistic today, praise the Lord!! Kole slept awesome last night, actually fell asleep at 8!! And slept all night! ????????? This early retirement is unusual for him. We got a good sleep ourselves and arrived here early this morning. We took Kole (pole and all) down to the play area to check out the trains. Kole's chemo will finish dripping this evening around 8pm. They said assuming he is drinking enough fluids and eating, it's up to us whether we want to go home tonight or stay till the morning. I think we may discharge tonight and just go to the Ronald McDonald House w/ Kole to sleep then wake up and leave. It's a lot to do in one night with the discharge, packing our stuff back up here, then again at RMH, and not to mention there's no housekeeping at RMH, you have to clean the rooms yourself before you leave. I don't know how I am going to feel about cleaning the bathroom, doing the laundry, and wiping our fridge out at 10pm. So we may just come home in the morning. It's so nice to read all the new messages, keep 'em coming, they mean the world to us! Hopefully I will have some new pics of Kole to post soon, his hair is totally gone now, just blonde peach-fuzz if you can believe that! Whose blonde child is this!?! Wishing all a beautiful day in Christ's light...."

 Worked more on the basket today - there is a story behind the photo I am drawing.  I will of course share it with you on the reveal day. 

Dearly Departed Drawings ~ Kole {day 353}

July 3, 2008

"God is Great, a true miracle arose over the night hours, and we returned this morning to find our boy able to hold his head up, use his arms and hands, and is even able to walk, talk, and stand. The staff here is truly amazed. They thought it would be at least a day or two, sometimes even three, they said, for this to happen. Looks like he responded well to the meth blue, and God truly placed His hand upon him as he slept. I am just so so so thankful and grateful, my boy is starting to look like his old self again. Right now he is getting a blood transfusion due to low red blood cell count. We are still waiting for the doctors to collaborate and make a decision regarding the next step. When I find out I will surely update. Thanks for all the diligent prayers, they truly are being heard and answered. God bless this beautiful day."


July 4, 2008

"There may be a slight lull in updates over the next week, because today we are going home! After cancelling the chemo, we are just going to pick up on the next chemo cycle, which is July 14th. In the meantime,we have learned how to give Kole his injections at home. We are going to have a nurse stopping by our house several times a week to make sure we are okay and to get blood counts and to help us out. Hopefully he won't be too neutropenic or anemic, or catch a fever, or we may end up back here before the 14th. At least for now, we get to go to our new apartment. We just cleaned out our room here at the hospital, looks like we've been here a month! Almost......Now we have to go over to Ronald McDonald House and clean our room out. We have so much stuff to take home, we kept accumulating and my husband would bring more things when he would go home. Anyways, I don't have the internet at home, but my best friend may have a laptop for me, so hopefully I can still update in the meantime. If anyone is interested in supporting us in our endeavor to organize our apartment, just give me a ring. Also, we are going to be buying stock in disinfecting wipes and hand sanitizer, if anyone is interested in donating in that respect. Outlooks for Hair in Etters is having a cut-a-thon on July 27th, so spread the word and let everyone who needs a fresh cut know the proceeds that day (from 11-3, I think) go to Kolebear! Thank you all for everything that you have blessed us with, we feel so lucky to be surrounded with such love and support. Thank God for friends and family, and even for strangers who have been touched by our story, and we hope we now will remain close friends. God bless...and off to our house!


July 14, 2008

"What a beautiful hectic world we went home to on the fourth of July! We did have a wonderful ten days and we got a lot accomplished. We are officially moved-in and have most everything unpacked. A lot of visitors came to see us at our new digs, and I want to extend a special thank-you to Anthony and Corinne who came all the way from San Diego. Kole really loves his bubble machine and his story reader, and we appreciate all the food and conversation. I hope you had a nice time while you were here, and I hope we can all meet up again when life isn't so overwhelming, and we can truly enjoy each other's company a little more. I know I wasn't feeling "myself" all week and perhaps kept to myself more than I would have liked to. I feel your stay here didn't go as smoothly as I'd have liked it to, and I hope one day we can do it again. Maybe next time we can actually leave the house more, and maybe even meet up in California!
After our discharge on the 4th, the weekend wasn't very eventful, although we did get to take Kole to see some Fireworks! It was his first fireworks display, and he loved it! Our home nurse came by the apartment and we changed Kole's broviac dressing, boy was that a show. I have since explained to the new neighbors what all the habitual screaming is about, and they understand. I'm not sure all the fuss was worth it, because we had to change it again ourselves. Another ordeal, but at least it stayed on the second time. He also is not very fond of his neupogen injections. Kole's appetite is awesome and he is gaining weight back. He slept really well all week, but not in his crib. He now has a crib phobia, due to the prison-like cribs here at the hospital, so we brought in the car-bed that William gave us. He likes that a bit more, but is still warming up to the idea of sleeping in it. I'm not convinced he won't just roll off of it in the middle of the night, either, so he is still sleeping with us at this point. It takes some getting used to, considering he hasn't slept in bed with us more than a night or two since he's been born, but I do enjoy snuggling him and hearing him breathe next to me. Last Monday he had painful urination, and we ended up back at Hershey on Wednesday. The pain didn't cease until Thursday, medical mystery. All tests were negative. The rest of the week flew by too fast, and here we are, yet again, on the seventh floor of HMC for Kole's next round of chemo. I did find out today that they will be trying the ifosfamide again at his next round, but will give him the methalyne blue before, during, and after treatment to make sure he doesn't have the reaction again. That scares me a bit, but I also want him to get the proper treatment, so, it's like a balancing act. At this time, we have been here all day just getting tests and waiting and tests and waiting waiting waiting. Kole is getting loaded full of fluids right now and chemo should start momentarily. We may be out of here Wednesday night or Thursday morning, hopefully. Looking forward to updating this week, and want to let all readers following our story know that we will be getting the internet at home FINALLY so there shouldn't be any more big lapses in updates. Will update soon, assuming there's news to share! Thanks so much to everyone who's donated gas and grocery giftcards, they are truly priceless to us right now. Thanks to all of you involved in the fundraisers and donations. I thank God we have a such a strong love circle around us, Kole couldn't do it without everyone. I am floored every day by another card and another donation and another prayer that reaches us. God bless. "



Still not getting the drawing time in as I would like, worked more on the basket today - trying to get some sort of foundation down before I start shading that area.  Holiday exhaustion is finally setting in.  This year seems to be filled with sadness for many of our friends and family that have lost loved ones, some are trying to celebrate the holidays without them for the first time.  No matter how much time has passed it never really seems to get easier.  I've seen many good reminders floating around on Facebook this past week and this one is probably my favorite.

Found on Dr. Joanne Cacciatore Facebook page

Some tips on how to handle the holidays with grief, first published on my blog several years ago:
So what do we do as mourners when others, all around us, are celebrating? In my nearly two decades of work- ing with and researching the traumatically bereaved I found some things which may help connect us deeply with self, other, and the natural world during what can be a very overwhelming time of year:

1. Sharing your feelings openly and honestly with others directly may help them to understand. Sometimes, the process of discussing the loved one who died before the gathering begins can relieve the tension others may feel wondering, “Should I talk about this or not?”

2. Rituals are often very helpful, especially new ones. A few ideas, for example, include lighting a candle and having a moment of silence at the beginning of the holiday meal, asking family members to make a donation to a specific charity in his/her name, setting an empty place at the table for him/her and asking each person to tell their favorite memory, volunteering as a family in his/ her memory, buying a gift for a child the same age and donating it, and a craft-making project where family and friends make an ornament in his/her memory. This not only gives others permission to share their feelings but also brings people together by enacting grief.

3. Connection with a support group in your area can be very helpful. Empirical research suggests that social support is one of the most important variables in helping grievers cope. There are many grief groups that meet in person and online. Even social media can be used to help connect grievers to one another.

4. Get out into nature if weather permits. Take a walk, hike, or just sit outside. If that’s not possible, then bring nature inside. Create an indoor window garden or a Zen sand garden. When possible, expose yourself to natural sunlight at least a few minutes each day.

5. Move your body. Exercise, even just walking, can help increase positive emotional states.

6. Practice intentional solitude using contemplative prayer, silent time, or meditation. Take a few minutes every morning and evening to breathe slowly and deeply, eyes lightly closed. Focus on the stillness if you can. Keep this practice going.

7. Change your routine. From the small things, like changing the music you play when putting up the tree, changing the meal you eat for a holiday, or leaving town for a vacation at the holidays, novelty can help us cope at difficult times.

8. If you are spending time with others during the holidays, tell them in advance of your fragility. Let them know that you may leave early (it’s nothing personal toward them), ask them if there is a quiet spot in the house where you can go to be alone if you need it, and tell them the ways in which you’d like them to discuss- or not to discuss- your feelings openly with others.

9. Give others permission to talk about your precious loved one who died. Tell them what you need. Sometimes, fear gets in the way of others approaching the bereaved. You can write a letter delineating what you would like. For example,
“Dear friends, At this time of year, we are struggling without our daughter, Jane, in our home. We know it is frightening but we’d like to ask you to talk about her with us and to ask how we are really doing. We’d like you to remember her in your prayers, and then tell us when you do. We’d like you to consider a donation to X charity in her name. Please send us emails rather than calling us. We find phone calls to be overwhelming right now. We’d appreciate help with meals during the week of Christmas. If you are able to leave a meal at the door, we’d appreciate it. Our friend, Mary, will be coordinating that for us. Please contact her at XXX-XXXX. Finally, we love to receive cards so please keep them coming. We love hearing your favorite memories of Jane. Thank you. We are grateful for your support, and will need it for many years to come.”

10. Finally, give yourself permission to take care of you and your family first. It is okay to turn down invitations to events, to cut back on holiday celebrations and décor, and to ask for help with child family members who may also be grieving. Eat nourishing food, drink water, get enough rest when you can, and watch alcohol/drug consumption. Stress, naturally, distracts us from self-care, so you’ll need to be more vigilant during this time of year.

There is no question that, for many, grief and the sense of isolation and loneliness amplifies during holidays.

These 10 simple strategies may help us remain more self-aware, self-compassionate, and feeling more connected to those around us who love us, to our precious one who died, and to a deeper and wounded part of our self. Together, and connected, we can get through these dark days.
-Dr. Joanne Cacciatore (c) 2009

Dearly Departed Drawings ~ Kole {day 351}

June 30, 2008

"It has been a very long day. It didn't start off so great. After waking up at 5 and getting to the hospital, prepared for surgery by 6, they bumped us (we were supposedly first priority) and then poor Kole, who had been fasting for the surgery, didn't get to have it until 9/9:30! He was begging for juice, and Daddy had to raise some you know what. But I am happy to say, the surgery went really well. His double lumen broviac is officially in place, and working wonderfully. Surgery took about an hour and a half. Kole was already alert and ready to go in the recovery room. We got admitted to floor 7 again, and have been here all day, with the exception of dinner, which was wonderful (thanks Barbara and Phil, and also mom who watched Kole while we enjoyed ourselves). Kole is already finished his chemo for the day, he had two bags (each separate chemo, both he has never had before) and dripped for over 2 hours. He has had a lot of extra fluids due to the fact that the one chemo causes some bladder problems. He has been having a lot of gas issues and distention in his bowels, so they gave him a little laxative, and I'm not sure it made it any better, actually, now he is having really bad cramps. But now he is sleeping peacefully and looks absolutely beautiful. The piggy in him helped him gain a pound over the weekend and he looks slightly more plump today. Thanks to Dot's giant milkshake, I too, feel more plump :) Tomorrow is another big day, with more chemo. We thank the Lord every day, we say, for the most wonderful day of our lives, every day we get to spend with Kolebear. Thank you all for your unfaltering prayer and commitment to us, it enables us to commit to our dear little baby boy that much more. God bless every one and every prayer, for I know heaven hears them, for I witness the everyday miracle."


July 1, 2008

"I updated pretty late last night so not much has changed. When we arrived here this morning, baby boy bear was still sleeping peacefully. Then the nurse came in to do vitals, and it was all over....Mom! Mom! Mom! and crying. He is doing great this morning, now that he's awake and realizing he is back here, in the hospital, once again. He chugged an entire Pediasure for breakfast, then decided to eat his Rice Krispies dipped in ketchup?? Hmmmm, whatever you want, Kolebear! After breakfast he colored his new dinosaur coloring book and played with some Lightning McQueen stickers. Aunt Lee went down to the gift shop at 9 and bought a GIANT Elmo mylar balloon...wow does he love beating people with balloons! We rented the movie Cars again, and he is watching that right now. Today they will change the dressing on the broviac, it still looks pretty bloodied from yesterday, but they wanted to leave it on for 24 hours. It will get changed once a week from here on out, we will have to do this at home. Also, they said when we give him a bath, we will have to put press-n-seal over it and tape it down...who know there was yet another use for press-n-seal? They are pushing his chemo forward 4 hours today, to 12:30, instead of 4:30. As long as he continues to tolerate the chemo, they will bump it forward 4 hours everyday. They do this so that we may be able to leave by Friday instead of Saturday. Although if he has any negative responses to the chemo (bad side effects), they won't push it forward anymore and will just give it at the same time everyday, in which case we will be here until Saturday. I honestly don't care when we leave, just hope that dear Kolebear feels as comfortable as possible. We will be "stuck" in the room most of the week, since these treatments do take awhile to go through his system. Anyone wanting to visit, it should be fine this week, we don't expect his immunity to really fall until we get home. Just make sure you aren't sick in any way. We turned in our keys yesterday for the old apartment, oh, how it feels good to just be rid of that place and those people we rented from. The new apartment is "together" for the most part, although things could be tweeked, I am sure. I am such a control freak when it comes to my "stuff" and the way things are organized and set-up, so it will be interesting to see myself trying to find all my belongings when I get home. It may not be pretty :) My husband said he tried to set things up at the new place to mirror the old place as much as possible, because that's all Kole knows, especially his bedroom. We want to try to limit him going through any more shock/confusion. Well, folks, I gotta get back to see my little lovey. Looking forward to all who would like to visit, and thanking again, deeply, for all the thoughts and prayers."


July 2, 2008

"I must admit I haven't felt much like updating because the events of the day have drained me. I am managing to muster up some energy, now, so here goes. The morning was pretty good, Kole ate a decent breakfast and had a lot of energy, because he slept so well. He did, eventually, vomit-up the breakfast, but we are getting used to this and just excited that he actually still has an appetite. Ironically, they gave him his anti-nausea after the vomit incident...I thought, that's a little late. We had several visitors today, and I am so thankful that we did, because I never could have made it through the events of the afternoon without them. They hung his chemo and fluids just before lunch, just the same as the Monday and Tuesday regimen. Everything was fine at this point, and he finished the chemo no problem. I decided since he had been held most of the day, to try to let him walk for a bit, so I grabbed him under his armpits and placed his feet on the floor. His legs buckled out from underneath him and his head wobbled backwards, and he began crying. I picked him back up and comforted him and sat back down in the chair. I gave him his sippy cup for a quick drink, but he couldn't hold it. I realized he had no control over his neck, hands, or legs. I freaked out and frantically pushed the nurse button. I was told on Monday when he started this round of chemo that it may cause seizures and confusion in certain rare cases. Well, I realize now my son must be the rarest of the rare, so I didn't waste any time getting help. The nurse team was in instantly and I told them he was shaky and didn't have energy and couldn't control his extremities. They got a certain "look" on their faces and quickly checked his pupils with a flashlight, they were fine, and called the doctors in. From here it was people rushing in and out. They commended me for my quick thinking and judgement

(mommy's know when something isn't right!). 

They wanted to rule out several factors first so they drew a lot of blood, and everything came back normal (CBC and electrolytes). They also wanted to be sure there was nothing wrong in Kole's head, so they sent us immediately down to CT in a wheelchair, and the CT came back normal. So they diagnosed the problem as an adverse reaction to the ifosfamide (chemo), the "rare" possibility. They said he has neurotoxicity, the build-up of the ifosfamide since Monday has affected his central nervous system. There is something that they can give him called methalyne blue (may be misspelled), which is like an antidote for the neurotoxicity, but it may take up to 24 to 48 hours for him to see any relief. They did assure me that the severity of his particular case is low, and that this neurotoxicity is totally reversible and there will be no permanent damage. But I am still pretty nerve wracked. The chemo for tomorrow and Friday has at this time been cancelled. They aren't sure, yet, what the next plan of attack will be. He may or may not be getting ifosfamide again, it depends on how he responds to the meth-blue. So, at this time the next chemo strategy is up in the air. We just have to wait for this to pass, which is the hard part. It's like I am holding a 26 pound newborn. He is showing a bit of improvement already this evening. He managed to feed himself some mac n cheese without dropping much. On top of today's events, my husband almost had a stomach episode this morning, and I am sure glad he wasn't around all day (he was sleeping) to have to go through this, because I truly think it would have been full blown. I am totally exhausted, and I will try my best to keep the carepage updated and let everyone know what the next strategy is as I find out. Thank you all for your prayers and love and encouragement, I never would have had the strength to pull through today without a hand from God (and Alysse, Lee, Kait, and Sarah). God bless."



Started work on the wicker basket, this year has been full of drawing challenges.  Lots of textures and repeating patterns.  Didn't get much time to draw today.  Things should start calming down some and I can get back to regular drawing days again! 

Dearly Departed Drawings ~ Kole {day 349}

June 27, 2008

"We are waiting to hear the status as far as our discharge goes. We may or may not be getting discharged for the weekend. The doctors are taking a really long time on their rounds this morning and haven't come in yet to tell us what is going on. Kole just got another echocardiogram and everything looks really good with his heart. If they would discharge us, we will still be coming back here Monday for another week anyways, because inpatient chemo starts Monday again, and Monday is also Kole's surgery. I will let you all know what's happening as soon as I find out, which is hopefully soon!"


June 28, 2008

"Apologies for taking so long to update recently...things have been hectic as I have been corralling a 19 month old once again! God is Great! We "patiently" waited yesterday to find out if we were getting discharged. Daddy wasn't feeling well and spent most of his day snuggling with Kolebear and resting while mommy tied up loose ends, like finding out where the outpatient clinic is (for future reference) and finding the pharmacy in case I needed to go down there to pick up meds before we were told we could go. I also made several phone calls to support groups (thanks Brie!). Your research into possible outlets of help for us was amazing. They gave us the results of the lastest xray before we were discharged...Kole's left lung has hypoinflated a bit (flattened in some spots), but they said that it should work itself out now that he's moving around. And the heart looks great. So after giving him a prescription for antibiotic to take over the weekend, they discharged us! Unfortunately we couldn't go home, as the move is happening as we speak. Thanks a million to the dozen or so people who showed up to help out and thanks, Larry, for use of the truck. We are officially out of the old place and getting situated in the new one (thanks, Diana, for the toothbrush floor scrubbing!). Daddy was unable to spend Kole's first night out of the hospital with us, but mommy got plenty of snuggle time. As I watched my son sleep next to me for the first time in weeks, I must admit I had a moment of grief over the situation, and I cried for him, and for my dad. I needed to get it out though, and then I crashed, and we slept for 14 hours straight! (Indicative of the many consecutive nights of interrupted sleep.) Kole is eating like a little piggy today, and we're fattening him up over the weekend! He likes it here at the Ronald McDonald House, which is where we are spending the weekend. We are expecting my husbands sister and brother from California tomorrow, who haven't seen Kole in ages. Kole's surgery to place the broviac is scheduled for 7am Monday morning, assuming he stays fever-free. I did have to call the hospital last night (uncannily 3 hours after discharge, thought to myself, was this a mistake?) but the fever of 100.4 did eventually go away and today he feels great. After Monday's surgery, we will be getting admitted again for chemo round 2. We expect to stay the whole week, at least. Things here are about as normal as they can be considering. Kole is playing and romping like I got my "old boy back". It's been crazy trying to clean up/disinfect the room here, do laundry, cook and eat, while caring for him in this big scary place. But I am getting it done. Thanks be to God for all the little miracles, everyday. Thanks, Jen, who made it out here from Philly yesterday to spend time with us our last day in the hospital and brought Kole amazing gifts of love. We are looking forward to more visitors as we come into the hospital next week. We postponed Kole's baptism/dedication for the time being, I will figure out which weeknight is going to work out for us and let everyone know. In the meantime, I want to thank everyone doing fundraising, we wouldn't be as comfortable as we are without you, and in return, couldn't keep Kole as comfortable as he is without you. God bless you, I wish there was some miraculous way I could explain the thanks I feel. Well I must be going, Kole wants to play and I have laundry to finish. I will keep updating and again, let me know if you want to visit this week, I will try to orchestrate everyone in! God bless beautiful Kole and this beautiful day."


June 29, 2008

 "Things are pretty terrific today. Kole slept really well last night, and had a big nap today, ate really well today, and also is drinking lots of fluids. I keep saying we are trying to "pork" him up a bit before chemo this week. He really hates his antibiotic that they sent home for him to take. It is refreshing to see him hate something so much though, even the angry side of him makes me smile. Today was "airport day".  My husband picked up his brother, Scott this morning.  Then this afternoon we all went to Harrisburg Int Airport and picked up Lee and she is staying here with us at Ronald McDonald House! We love having her here with us, and Kole loves playing with her. Today has been pretty laid back, just a lot of love and play before next week begins...I am kind of dreading it. I feel like I am on a roller coaster. Kole played outside today on the Ronald McDonald play structure outside, and loved it. He went down the slide (big smiles!). I want to spread the word to everyone about the fundraiser that my awesome coworkers are doing, up at Outlooks for Hair in Etters - they are doing a sandwich sale until July 15. Also my sister, Kim and her friends are also orchestrating some fundraisers, get in touch with her at Beshore and Koller if you are interested in helping! I want to thank everyone who made our move such a success, I wasn't there to help, so I appreciate everyone's enthusiasm and drive to get it done. Thanks, Phil, for your help recruiting and executing. And to everyone who lent vehicles, and their time, especially the Kline family and all our dear family and friends, not to mention the awesome William Seiler.  Well I must get back to Kole while I still have a few waking hours with him. He is running a low grade fever this evening (sigh), let's pray it doesn't get worse and we can still have surgery in the morning. Visitors, just touch base with me before you come up!! Love, kisses, and reciprocating the prayers that are coming from sea to shining sea."



Falling behind a bit trying to get ready for Christmas, finish out custom orders and my husband has been on an eight day, 12 hour, third shift schedule since last week (its like single parenting - I don't know how you ladies do it).  I met with our friend Karen this weekend, her husband Joel was killed in a car wreck just after Mothers Day this year.  He is my husbands dear friend from childhood and leaves behind a wife and 4 year old daughter.  It is nothing less than devastating and yes, I will be drawing Joel.  It was nice to catch up with her a bit Saturday, then Sunday I fell asleep on the couch from exhaustion.  Today I worked mostly on Koles hair and shirt with a few minor adjustments to shading on his face.  I've been meaning to tell you, I discovered a friends blog Still Life with Circles  the other day and learned all about her little Lucia.  I was instantly captivated by her writing and Lucia.  You might also remember me receiving a tarot card pull from my friend at The Moon + Stone Healing during Neils portrait on day 252.  I also ran into her at the Mum Expo I attended where I had an aura photo done.  But the first time I laid eyes on her was at the book signing during Violets portrait on day 136.  I am not taking any of this lightly, there is a reason I keep bumping into her....Lucia.  Maybe she will let me draw her too.

Dearly Departed Drawings ~ Kole {day 346}

June 25, 2008

"This morning has been trying. We arrived later than we wanted to and found Kole alone with a cold plate of breakfast. I want to ask the staff at some point today if they can feed him when we aren't here first thing? They seem to keep pushing the fact that he isn't eating. I am frustrated. We saw blood on the floor and realized that the IV failed overnight and they had to start yet another one. This poor child is being poked all the time. They are going to mention to the doctor possibly moving up the surgery to put in the broviac before Monday, or chances are he will need a new one every day. His veins are just collapsing. The nurse we have today couldn't get one in. We are getting ready to give Kole a bath. We removed his neck dressing and the central line boo boos seem to be healing okay. Today we are going to try to feed him as much as possible and work out his legs. Keep him moving in general. Tomorrow, my husband is going home to start the move. He has several things to arrange, if you are interested in helping please call him. I also have to leave the hospital for the first time in 15 days, I have a doctors appointment myself that I can't cancel again. We are looking for someone who Kole is familiar with to come up for the day and spend time with him while we are gone and help take care of him. Anyone interested in helping us, please call Karl or me. We talked to the Ronald McDonald house volunteers and they said that we don't have to leave even though our 14 days is up tomorrow. They understand our situation and said they have had people stay much longer than we have. So at least we have that comfort in knowing we still have a place to stay. Karl is thinking about going back to work after the fourth of July weekend. We think we will be okay financially until then, but realize the donations we have brought in won't last forever. So that kind of depresses me, it takes two to keep this machine running smoothly up here, and anyone who is interested in helping me out once he goes back to work please please let me know. We would be eternally grateful. I should get a chance to update again later today, until then, God bless and thank you so much for keeping us all in your thoughts and prayers, today looks like a day we will really need them

The day didn't remain as grim as the start. Kole was a bit fussier today and seemed so tired in spite of his ANC count coming back up (hooray it's at 548 instead of 0!). The blood cultures still show no signs of any infection. We are so happy and blessed with these little victories. And he walked and walked today as well, maybe the physical exertion is wearing him out since he hasn't walked in two weeks. The doctor came to speak with us about the IV dilemma. I feel so blessed to have her as our doctor, she always seems to read my mind. She said if the IV he has in now would fail, like all the others have the last two days, then she isn't going to give him another. She said we will just let it ride and go without IV medication. She would rather he not be continued to be "stuck" day in and day out. So she got the ball rolling on the surgery, instead, to get the broviac line in early (yay! just what I was thinking). Kole is scheduled for surgery tomorrow. However, tonight, now he is running a fever (setback!). She said she is wary about him having the surgery now, but the surgeons will make the final call in the morning. We will have to wait and see how the fever fares. From hour to hour, the situation here changes. So now I really don't know when the surgery will be. Tomorrow, Friday, or Monday, we are playing it by ear now. In the meantime, Kole ate well and drank well today and has been more comfortable since they started him on morphine (very low doses as needed). A sad moment for today, Kole's hair is starting to really shed and I have a feeling over the next few days it is going to be coming out a great deal. I was prepared for this but seeing it happen is still really upsetting for me, not just because of my job, but because I have always thought (as mom's do) that his is just so beautiful. I have been blessed today by wonderful, caring friends who have showered us with food, clothes, and games for Kole. We also received several monetary donations and gas vouchers which we feel are a gift from God, we are moving now and the security deposit and first month's rent, of course, is a big chunk. But we are doing so well, praise the Lord. Thank you to all of you for your help, and offers of help. We sincerely could not do it if it weren't for you. Kole's immune system is on it's way back up and visitations aren't as stiff now, so I will keep in touch via email with those of you intending on visiting. Please be aware that because of the uncertainty of the surgery, some visits may have to wait. We love you all and God bless you and thanks a million."


Jun 26, 2008

"We had a very exciting day today. Mommy and Daddy had to leave the hospital for a bit this morning, mommy had a doctor appointment and daddy had to start the move. When we returned to the hospital, we learned that Kole had a fantastic morning. He was running about in the hallways and asking to go outside. The music therapist was in and she played some guitar, but Kole wasn't interested...until she starting singing about trains...then he was totally excited and chattering and pointing to the train he has there in his room. He wasn't eating a whole lot or drinking either, and we are praying that his appetite during the day returns. When mommy arrived back at the hospital, Kole took a three hour nap, indicative of his busy busy day. The doctor came in and said that surgery is definitely Monday. She actually wants to send us home over the weekend, but we plan on explaining the move-situation to her in the morning, and we think we will just be staying here at the hospital for the weekend yet. Or if we do have to leave the hospital, then we will try just to stay at RMH until Monday so we don't have to make the commute just for 2 days at home before we return here for another week Monday. The big news of the day was that Kole went outside for the first time in 16 days!

He was so happy, riding in his wagon and feeling the grass between his toes. 

While we were outside, I got the bright idea that this might be a good time to shave Kole's head as his hair was just coming out everywhere...and we did. Kole looks so good with his new haircut! Upon returning to the room, Mr. Kolebear ate a BIG dinner (yay!) and relaxed with all his "aunties". He played with his cars and his panda bear. He is no longer on any morphine and doing quite well without it. The xray that he had today showed not much has changed with his lungs, except that there are some places within the left lung that are flattened out due to laying around the last two weeks. The resident said this will probably go away now that he is more active, we just need to keep doing our "chest exercises" with his little suction massager. He does have a bit of a throaty cough, which worries me, and he still has a lowgrade fever. As long as it's gone by Monday, we'll be okay for the surgery. They took Kole off of one of his antibiotics, so now he just gets the cefepime. He is still getting IV fluids overnight tonight, miraculously, the IV they put in yesterday is still kickin'. We got a new nurse tonight and like her a lot. It is time to retire back to the RMH, Kole is sleeping peacefully. God bless and good night...tomorrow Kole is getting dedicated to Jesus. Amen.

P.S. Thank God for all of you helping us raise money. There are many many people working hard on sandwich sales, pizza sales, news ads, fundraisers, and much more. Words escape us to show our gratitude. We only hope that we will one day be able to return all the favors. God bless you all."



Today was more background, adding detail to the quilt behind the crib and a few corrections to Koles cheeks.  Kole is such a beautiful boy, big, bright eyes and the highlights in his hair are stunning!  I really love drawing children, I can hear their giggles and laughter in my house.  I've been told they are all here and around me.  I don't always hear them as clearly as my Nan or Houd when they visit, but there are plenty of occasions I've "heard" my kids, checked on them and discovered they are still sleeping.  We have lots of "voices" and "footsteps" in our home.  Are you surprised? 

Some of these blog posts will get long as I try to squeeze the daily updates on Kole into the drawing. I feel everything is important and essential to fully appreciate the weight of the situation.  Things we sometimes take for granted, things that are null and void when there is a serious illness or disease.  I will open your eyes.  Kole will open your eyes.

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!"