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)