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!
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