Friday, January 2, 2015

Dearly Departed Drawings ~ Kole {day 367}

September 4, 2008

"I am unfortunately still here at the hospital. I am being told I will go home tomorrow upon the results of the lab work, and followed up with about a week of daily nurse visits. I am so excited to go home! Kole had a cranky day today, I can only imagine how he feels after being loaded with toxins over the course of the last five days. He is maintaining as usual, though. He just ate the icing off of a piece of cake with a big smile, after having a piece of yummy pizza (thanks Andrea). Cousin Karley is here to visit with him tonight. I am out doing laundry and updating the carepage while I have a minute to myself.  My husband is still teetering on the edge, feeling okay, but always nervous as to what's around the corner. I'd like to say thanks for all your messages, they mean so much to me when I come to the computer lab to update and see everyone's awesome words of encouragement, I get teary eyed. God bless and, hopefully, I'll be at home and you won't hear from me for a few days!!! Good night"

September 13, 2008

"Hello and thanks to all of you in your endeavors to support us through the most difficult time in our lives......There is going to be a fundraiser TOMORROW (the 14th) for Kolebear at the Silver Lake Inn in Lewisberry. The Silver Lake Inn is owned by Cat Towers, I met her by doing her hair several times up at Outlooks, and she wanted to help. The proceeds from the lunch and dinner buffets that they typically serve will be going to the Koles Fund. I also think there may be more to get involved in, as far as raffles and contests, but the main focus is this buffet. I have heard good things about the food, and hope that you will come out and share in fellowship with us. Kole will be making an appearance himself, sometime between the lunch and dinner rush (1-5), to thank all who came out to support us!! Please spread the word, even if you can't make it, maybe you know someone who likes to dine out on the weekends, this would be a great opportunity to help a great cause. Thanks and hope to see you tomorrow!! God bless you all!"

September 21, 2008

"There is much at this point to catch everyone up on! We did finally go home the night of the 5th, and our home nurse met us there so that she could teach me how to give Kole his IV medications at home. I was a bit thrown off, I thought they would be coming to do it, but felt up to the task. She was an excellent instructor, and I managed to flush his tubes, hook up his syringe pump, change the lines, etc etc without any problems. I felt so proud, like a nurse myself. Kole needed the vancomycin every 6 hours, and that was hectic, the schedule was 10-4-10-4 so getting up at 4am was rough, and waiting for an hour each time so the medication could run. Also, the fact that he only had, like, four feet of tubing was difficult. Trying to corral him in the apartment with an IV pole was interesting. On top of the vanco, they also had him on a heavy dose of amoxicillin, not to mention the usual weekend dose of Bactrim. Needless to say, he was darn-full of antibiotics and had a bout of diarrhea, but by the 14th he was off of everything, and feeling fine. We are sure to have killed whatever nasty bacterias were growing inside. Kole was still on a bit of a lockdown, though, for the rest of that week, just to be safe.
We did manage to make it out to the fundraiser event at the Silver Lake Inn which was a big success, thank you to all for the amazing support, especially the staff at the Silver Lake, and of course, my super awesome coworkers at Outlooks for Hair, you guys ROCK beyond words.

 The rest of our break at home went wonderfully. It was the longest break we've had away from the hospital and I'm here to tell ya we NEEDED it! The weather was fantastic and we spent a lot of time outside. We walked down to see the trains go by and went to the park. Kole really likes to go down the slide. My husband, in the meantime, is still battling to get through his discomfort. He has good days and bad days, but just can't seem to make the good ones consecutive. He got the results of all the tests they did, and the MRI, upper endoscopy, bloodwork, fecal and urine all came back NEGATIVE, as usual, they didn't find anything. So, back to where we always end up, in a state of confusion and frustration. Things at his job were on the rocks because while he was battling the pain, one good day, one bad day, he still tried to work in between. His coworkers obviously didn't appreciate his attempts and became very mean to him (they don't understand the nature of his sickness, or, perhaps they just didn't believe him) and he ended up quitting because they gave him such a hard time when he tried to work with them regarding FMLA and medical leave. He was so upset, but he said that now he just wants to focus on getting and staying healthy, and doesn't need the negative energy of that place. He has an appointment in October to see the doctor up here at Hershey, hopefully he is amazing and can find a cure for my husband. Or just some relief. We really want to try to get onto an episode of Mystery Diagnosis, this has gone on long enough.  I also came to the end of my FMLA leave (12 weeks) a couple weeks ago and now I also am not currently employed. When I am able to work again (when my husband is well) I will have to go through a complete rehire process. Sigh. Things are just so bleak for us right now, but by the grace of God and the support of our community, which is to us a blessing, we are getting through it.

We didn't anticipate being back at Hershey until Monday the 22nd, but Friday night Kole spiked a fever, and after a call into the hospital, we had to rush in to the ER. I am no dummy, at this point, and realized we would probably be admitted (we were) so I packed for a week. We were in the ER from 930 to 130am then got a room. Kole didn't sleep until 3am due to all the ruckus. The course of the weekend has brought on more xrays, blood cultures, antibiotics, etc, but they aren't finding anything this time (praise the Lord). He must just be fighting off a cold/virus (his white counts are a bit high which is indicative). Today was the first day he remained afebrile (although he almost fevered this afternoon) and they said we could go home. But, Kole already has chemo scheduled for tomorrow morning, so I requested that we were just able to spend one more night, he will get his chemo in the morning, and then we are going home! He will continue to receive chemo all week, it will be outpatient, we will drive up and back every day. After this round, ending Friday, we will either be getting one week off or two weeks off, and then they will do another round like this one again (outpatient for a week) and then we will have another CT scan. Three weeks after this CT will be surgery. It looks like Kole will get a bittersweet birthday present - surgery - no more tumor!!!!!
The plan after surgery still remains to be developed, but I think it will involve more chemo and talks about radiation. I was also told a PET scan will be given at some point. I will be sure to keep you all informed.

Kole is still eating and drinking well, considering he's been fevering, but he has lost a tad bit of weight, so I am just focusing on keeping him healthy and stuffing his face :)
God bless you all and thank you for all your prayers. They mean the world to us. We can't wait to see you all when we get home.

P.S. Kole's vocabulary has recently exploded. We're sure he can say well over 100 words at this point, and even says some sentences. We know you wouldn't expect any less from our amazing wonder boy. Good night!"

Today was more work on the background wall hanging and crib spindles.  A few very important dates are coming up on us fast.  I will tell you about them soon.  I've been thinking so much lately about these beautiful souls.

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