December 18, 2008
"Time is of the essence. We need a miracle. People keep asking us what they can do for us, for Christmas or just day-to-day. All we want is prayer in Jesus' name. We wholeheartedly believe in miracles. We've seen them happen in families and friends around us. We've read about them in the Bible. We believe there is an evil that is trying to keep it's stronghold on our son, and know that the Lord is mightier. We believe He and only He can take this ravenous disease out of our son. Make him whole again. We believe. We believe.
Please believe and pray with us. Know that the prayers you say for us do reach His ears. The prayers you have said for us, mommy and daddy, have kept us strong. We have been drawn into the Lord the last couple days more than ever. There have been people placed in our path that we know specifically were put there by God. We believe His will will be done on earth as it is in Heaven. We know there is no cancer in Heaven. We know this means our son is healed by the stripes of Jesus. We look forward to giving the morphine (to keep Kole comfortable) back to the pharmacy and telling them WE DON'T NEED IT. And telling them not to bother calling the hospice, WE DON'T NEED IT. OUR BOY IS HEALED.
We invite you to attend the healing service at Harvest Chapel in Abbottstown this Saturday night to witness God's miracle with your own eyes. The more the merrier, for one voice on earth is 1,000 in Heaven. We cannot wait to spend the rest of our lives with our son and give all the glory to Him.
God bless you all."
December 25, 2008
"Our family wishes you all a very Merry Christmas. We extend our appreciation to all, for in one way or another, you all have touched us and made our days more comfortable and worthwhile.
Thank you Jesus for each wonderful day with our boy.
Kole is thriving more in his home setting, I believe, than he would be in the hospital. We are keeping his fevers under control, he is slightly more tired than normal, but other than the occasional belly-ache and diarrhea, he is doing quite well right now. We encourage everyone who wants to see him to please arrange it with us, you are more than welcome to stop by if you are healthy.
We are heading to the Strasburg Railroad tomorrow, Kole has been asking to go for days. Let me know if you are interested in coming along/meeting us there. Our intention is to get there to make the noon run, followed by the Choo Choo Barn tour.
Again, have a wonderful holiday season. We can't express enough thanks."
December 31, 2008
"We want everyone to know that we are hanging tough and we've got our armor on, ready to fight into the new year. Praise the Lord. Kole is sleeping comfortably tonight between his daddy and I, and I praise Him and give thanks for another day. Thanks to the Bocanegras for the Bible Study and the invaluable spiritual guidance. We are practicing with our new tongues.
As always, let us know if you'd like to visit Kole, or even us for that matter. Anyone healthy welcome. We have been enjoying the quality time spent with our families and friends. Thanks for the homecooked meals and Christmas presents. This otherwise difficult time of year was quite blessed.
Happy New Year to All and Spreading God's Peace and Love"
January 2, 2009
"Just wanted to keep everyone posted on what's been going on with Kole this week. Ever since Sunday/Monday, he has been complaining more and more about his belly, exclaiming, "My tummy hurts mommy". This pain seemingly coorelated with his bowel movements, so we weren't too concerned at first. He continued to run some occasional fevers, but overall his pain was controlled with Tylenol and Ibuprofen. However, Tuesday night, we became more concerned after noticing that he wasn't wanting to eat as much (he continued to drink very well - we have been pressing our own fruit and vegetable juice smoothies for him). He complained more and more of the tummy aches to the point where he was in serious distress. He would touch his right side, where his liver is, when he cried. We called our hospice nurse because his abdomen was BULGING and we were worried. He looked pregnant. He had blue veins like roadmaps all over his abdomen. We thought maybe he had a bowel obstruction, which could cause all the belly-bulge, but after the nurse came, she said she heard plenty of bowel movement, his temperature was fine, his blood pressure was fine, and his lungs were fine. There wasn't much she could do at that point in the middle of the night, but recommended we start giving the morphine we were sent home with more regularly. We got a visit from another hospice nurse the following day, Wednesday, and she agreed that he was "fine", i.e. vitals are all okay. We kept Kole on his steady morphine dose, every four hours, and struggled watching him suffer. He avoided laying on his belly at all costs and just wanted to be held all the time. One of my best friends, Tasha, who is a nurse, came over to hang out with us on New Years Eve as we held Kole and watched him sleep a lot. She asked about his abdomen, because it is quite alarming to look at, to see what the hospice nurses had said. I said I wasn't sure what they were planning on doing about it, and she recommended that we call the doctor (Kole's oncologist here at Hershey). Tasha swore up and down that it was ascites, which is fluid buildup inside the abdominal cavity, due to end-stage liver disease. As time passed, the belly got bigger, and bigger, Kole got more uncomfortable, wasn't walking much, tired all the time, not eating, his legs and feet were swelling up, and as you laid your hands on his belly you could feel "bubbles" or "waves" inside. He enjoyed being in the bath to alleviate the weight. Last night, we were alarmed when we heard a loud rumbling from inside the abdominal cavity, and Kole said, "Oh, my....I just burped." But he didn't burp. The sound was, like, trapped inside. So we paged the doctor, and she called us back directly at like 10:30pm. We had been planning on bringing Kole to Hershey on Monday, but we didn't feel like we could wait that long. We were given free, VIP-suite passes to the Sesame Street Live - Elmo Grows Up show at the Giant Center this Sunday (yay!!!), and we are bound and determined to find a way to make Kole more comfortable to be able to enjoy it. We found out that ascites can actually be relieved by paracentesis, where they drain the fluid out surgically. The doctor said that she needed to do an ultrasound, so here we are at Hershey today. We had an ultrasound at 11 that confirmed a very large amount of ascites within Kole's abdomen. His weight is up 2 kgs, which is guesstimated to be around one liter of fluid buildup inside his body. To get a clear mental picture, it's like he is carrying around a 5-6 pound bag of sugar on his belly. They followed-up with an xray to check the lungs, which looked pretty good. There was a small amount of pleural fluid in the lungs, but the doctor said that could be a result of the fluid from below pushing up, and if we can get the fluid out, this will probably go away. His lungs still sound very good and clear. Also, they saw from the ultrasound, that even though there is a large amount of fluid which has resulted from his disease, the tumor itself and the surrounding lymphnodes do not appear to have grown much, there isn't much difference since December 15th. Praise the Lord for he hears our prayers!
The next step after the scans today was Kole had blood drawn to check and see if his liver clotting function is okay, in case he would need to have a surgical procedure. Turns out his liver clotting platelets are low, and will have to be replenished before he can have the procedure. Right now, he is in his room on 7 west receiving this transfusion, and he is taking a nap with daddy. We are waiting for the pizza he ate earlier today to digest as well, he needs an empty stomach for the procedure. The doctor really brainstormed for us, and seems to work us into busy schedules, what a miracle worker. A parentesis to drain ascites in a small two year old hasn't been done before. This makes me a little nervous. The doctor said the procedure will have to be ultrasound-guided, so they know what they're "hitting" when they go in. They will also need an anesthesiologist there as well as the person performing the surgery. The well known peds surgeon here, isn't here for a few days. And we don't have the luxury of time at this point. So the job has been handed over to Dr. Bob. We love Dr. Bob anyways. He was one of Kole's original doctors when we arrived here in the PICU, with Dr. Ceneviva. Dr. Bob worked for several years at St. Judes, and is familiar with this procedure, and feels confident performing it on Kole. After seeing Kole today, they all feel that this is a worthwhile attempt to make him more comfortable, as he is otherwise still doing quite well. They are on uncertain ground, so they aren't sure how long the relief will last, will it be days or weeks? He may need to be "drained" again if the fluid reaccumulates, so I think they plan on keeping the catheter in, at least intially, in case this happens, it won't be invasive to go in a second or third time. Looks like we will be here at least until tomorrow, they do want to get this done as soon as possible, but of course they have to orchestrate quite a team to do it. So that's what we're waiting on. We pray this surgery goes well, that Kole gets the relief he deserves, that the Lord keeps this fluid from reaccumulating, and that Kole can enjoy seeing Elmo Live on Sunday. Praise the Lord!!!
Thanks to all praying for us, and a big hug to everyone helping with fundraisers. We love you so much even though we may not even know you that well. You are all doing such a special and selfless thing for us. We don't even know how we could ever say thank you enough, but, THANK YOU.
God Bless and I will keep everyone posted on the surgical outcome. "
I attended a crystal workshop at Alta View Wellness Center last night with a friend and learned about crystals and ways to "release" the grief and sadness I've taken in during the past year regarding Dear Departed Drawings. It felt like I had been holding it all since last January. We were given crystals to use during the release meditation that we are able to keep and bring home with us - called a Mojo Bag. I now have a few new crystals to use during a cleansing or clearing meditation after I am done drawing for the day. Not sure why I didn't think of doing that before. I also use crystals during meditation before I start drawing and keep a few near the drawing as I work. I will take pictures and post information about my newest crystals soon. Today I worked on little things here and there that I considered unfinished, darkening tones, adding shadows, defining lines. We are getting closer and closer to completion. I hear the sound of mylar balloons being jostled (Kole really loves balloons)
The beginning of Koles journey is here on Day 324
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