Wednesday, January 7, 2015

Dearly Departed Drawings ~ Kole {day 372}

December 12, 2008

" Discharged on Wednesday the 26th after the blood cultures remained negative (must have been a virus or one time fever spike), we immensely enjoyed our Thanksgiving weekend at home. We had a delicious meal that we didn't have to cook or clean up, and we shared time with our families. Both my boys were feeling well, we shared our time together, who could ask for more? Four days home.
We returned to Hershey Monday the 1st for a 5 day round of chemo (ifos/etop).

Please pray that these three rounds of compacted chemotherapy since the last CT scan will reduce Kole's tumor and prevent spread. He has been hit hard with the chemo for the last 6 months. I almost can't believe it's been 6 months already that we've been fighting this. Some days it feels like 6 years, though, too. This Monday the 15th is a really big day. It is another follow up CT scan to see if the chemo is doing anything at this point. We went back to the chemo agents used initially that got the most shrinkage, and the hope is that we have a smaller, operable tumor. The surgeon said this is when we will have "Part 2" of our meeting. Our first meeting was bleak, but he did say it was "to be continued at a later time". And now this is the later time. My husband and I have pretty much been on a rollercoaster this week, constant anticipation and anxiety. Our sons life almost seems to hang in the balance of this week. I am feeling optimistic. Seems I am always feeling more optimistic than the body language I get from our doctors sometimes. They don't know my son like I do.

We have good news! I know this is Advent and a busy time for many people considering the holidays are coming up, but I am posting this on the carepage as an open invitation for all who wish to attend. Kole will be baptized this Sunday at Christ Lutheran Church on Main Street in Manchester. It will occur amid the usual 1030 service. This is a very special day for Kole, and for all of us who love him. We encourage you to come and be with us physically for this special event, especially because you all have been there for us spiritually, prayerfully, and emotionally. It will only take 10 or 15 minutes, but ultimately will be a timeless moment for us.

For those of us who got used to seeing Kole with some hair again, he is back to his old baldy self. With my husband being well for two weeks straight, and Kole being his usual resilient self, we find ourselves waking up and just taking advantage of every moment and opportunity that comes our way. The three of us being together in health means everything. After Kole's CT Monday, there will be another chemo round, while decision making is done, which we're sure will lead to a successful surgery/radiation combo. There is a possibility that we will seek a third opinion if Hershey still does not want to operate. That will be at the transplant center in Pittsburgh, or at MSKettering in NYC. Thanks Cynde for the referral info on Dr. LaQuaglia, sounds better than fantastic.
I wanted to express my appreciation to Tammy and "the girls". You have made Kole's Christmas a lot brighter by adopting us for the holidays. And thanks to those who thought of mommy and daddy too. Truly, thank you. It means more than you know.

Also thanks to the APHON nurses at Hershey who adopted us for Thanksgiving, and sent home tons of goodies and groceries. We won't be visiting the "center aisles" at Giant for months.

Thanks to Christ Lutheran Church for the generous donations given last Sunday at the service. It will definitely help make our Christmas season more comfortable and we can't thank you enough. We still find it hard to believe that people we don't know all that well can pour so much love into us. Thank you.

Thanks Heather, Matt, and Collin (Carson too) for all the birthday gifts for Kole. Radiator Springs is complete!

I got some free passes through Ronald McDonald house to go to Hershey's Christmas Candylane. It is supposed to be "nice" this weekend, we may just go on Saturday if Kole feels well.

God bless everyone reading this. We love you."

December 17, 2008

"(This is Renee's best friend August updating for her).

So, Monday was the BIG day for the Koles family. Kole had another CT scan so that the doctor could see his progress. Renee and her husband received the news that Kole's tumor has not shrunk anymore, but has grown. Renee informed me that it is growing upward toward his heart. Due to this outcome, the doctor felt that treatment was not working, and sent them home. She said that radiation will not work either, because of the location of the tumor - it would burn up his little lungs. Surgery is still not an option either. Everyone that knows what is going on are devastated, but still remain positive that God is going to pour upon their son a miracle. Kole is still running around like an energetic 2yr old, but Renee said that he struggles a little as far as his appetite goes. I really don't know how to describe how Renee and her husband are feeling, but to say that the past few day have been very emotional. Renee said that the doctor has been in touch with St. Jude's and will also get in touch with Sloan Kettering to have them analyze Kole's case. For so long Kole has wanted to go to tumbletown to play, but they were fearful to take him because of the risk of being around so many kids. Well, he got what his heart desired. They took Kole and Karly to tumbletown and they had a blast! We are all praying for a miracle now, and they are just trying to enjoy every minute they have with Kole. A few of us got together at our friend Tasha's house last night, and had a great time just hanging out. Kole is just the most precious little boy, and every time he talks its like music to my ears. He is just so sweet, and well mannered. He is smart, and loves to talk. There was moment when all of us grown-ups were in the kitchen, and we could hear the Kole talking in the living room. His daddy looked me with such sadness and said "I just can't imagine my world without that (the sound of Kole's voice)". We spent the last day just talking about how much we love Kole, and how truly special he is. We have laughed, cried, and prayed in the last 24 hours. My mother and stepfather (Maureen and Happy) came by last night and ministered to all of us, and prayed over Kole for healing. We are just asking everyone continue to pray for Kole's healing, for his daddy to remain healthy, and for peace of mind for his parents so that they can focus on enjoying every minute they have with Kole. I am sure that Renee would have written this much better than me, but she is just so exhausted right now. I am sure over the next couple of days she will be update again.

Thanks for all of your prayers for their family."

Today I focused on the basket next to Kole.  Detailing and darkening lines getting ready to shade the wicker.  I am really really really happy with Koles face.  Overjoyed I accomplished his "look".  I hope I made his mother and family proud.  Still lots of little details to finish.  This little man is such a strong spirit.  His family and I aren't the only ones that can feel him....

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