Dearly Departed Drawings ~ Kole {day 368}

September 23, 2008

"OH, GEES. One of Kole's favorite expressions........and my sentiments exactly. We got discharged from our room yesterday morning and spent the entire day in clinic, which is at the University Physicians Center, connected to the hospital. Kole received a vincristine push (chemo) and then they gave him his first dose of Irinotecan, a new chemo drug he hasn't had before that typically is used in colon cancer patients, but new studies are finding it effective for ARMS. It causes extreme diarrhea, which began almost instantly, and nausea. They kept us for an hour after the drip (which lasted for one hour) to make sure he didn't have an acute diarrhea attack (he didn't). Then they told us we could go home and just continue our outpatient schedule for the week and give Kole Immodium for the diarrhea. I was slightly weary to go home because yesterday morning (Monday) Kole almost had a fever, but they sent us home anyways. I didn't arrive home until 6pm, and spent the entire evening cleaning and unpacking. But for what, I ask??? This morning, bright and early, I thought something might not be right with Kole. He didn't wake up easily and he was hot, hot, hot. I took his temperature and got 100, sighed, and repacked. Again. My appointment for chemo was at 1230 and at this point I was worried they may not even want him to get it if he was running a fever (which is bad news, he really needs his chemo). So we got to clinic, and they got a reading of 99.3 and said he was good to go. I disagreed. In the waiting room, he just felt like he was burning up on my lap. They wanted to draw blood cultures anyways, because it turned out that one of his cultures from the weekend actually did start to grow some sort of bacteria, it just took it a few days to grow. So, while back in the room, I asked the nurse to check again and lo and behold - a fever! Of 102. So Kole got taken back to get checked out by the doctors, and they agreed he most likely has infected tubies. They also agreed that he cannot afford to miss any more chemo, so we did receive more irinotecan today, with no diarrhea thanks to Immodium. The plan, now, is this: Kole will remain in the hospital for at least three days/nights, receiving inpatient chemo and lots and lots of antibiotics. I don't know if we will go home over the weekend, but, next week isn't a week off like I thought. They are going right into another round - vincristine/Irinotecan on Monday and irinotecan tuesday-friday. All Outpatient, hopefully!!! They may even just send a nurse to the house, they said. Then, he is scheduled to have his CT to evaluate for surgery. This is scheduled for October 6th. There will be three weeks from CT to surgery, with another vincristine/irinotecan round somewhere in those three weeks. This is going to be a very busy schedule for us, no doubt, but we are inching ever closer to the miracle that is a tumor free baby boy! God bless all of you who continue to lift us up in thought and prayer, we couldn't do it without you. I honestly can't tell you what it means to our family to have such wonderful friends and support. We apologize we haven't been able to have more visits with people, Kole and my husband have just been too sick. But we're sure this will soon pass, like a change of the seasons, and by November I expect there to be a lull in this storm. God's peace and love"


 September 24, 2008

"Things are up in the air when it comes to what to do about Kole's tubes. The doctor is working on ideas about what to do just in case all these antibiotics don't work and Kole's tubes have to come out sooner than expected. He may receive the chemo he needs through temporary port, and then have a permanent PICC line put in when he gets his tumor surgery, although he may be too small to put a double port in (his broviac is double lumen, very convenient). No big deal, it would just be a little less convenient to do the chemo. So, we are all on standby to see how Kole does. Hopefully, the antibiotics will kick bacteria butt and the tubes can just stay in place, otherwise he'll have surgery to have them out early.
I was told today that the tumor board surgeons are going to discuss our case on the same day that we get the CT, Monday October 6th. The doctor also said that we will meet personally with the surgeons and have a meeting with them, and discuss everything the surgery will entail, and what to expect afterward. I also got the most exciting news of all.....the doctor arranged to have Kole's surgery scheduled for after Halloween and his BIRTHDAY (November 2nd), so he can enjoy both. He will be having his surgery, as of right now, on Friday, November 7th. Bye bye tumor, you've been around long enough......
I am having a lot of anxiety since finding this out today. I am feeling blessed that it is finally happening, and apprehension about how life might be different, again, after surgery. Bittersweet. God bless."

September 28, 2008

"Just letting everyone know we are still here at Hershey. With the exception of Monday night, we've been here since Friday the 19th. We thought Kole was going to have to have surgery over the weekend to have his tubes removed from his chest, but as it turns out, they are still in place. It took many days for the doctors to do deductive reasoning as to what was causing all of Kole's fevers. It got to the point where we were packing him down with ice packs at night as he inched ever closer to 104 degrees at one point. They thought it may be infected tubes, it could have been viral, it may have been a bowel infection due to overloading him with antibiotics, or a myriad of other things. The results are in, and with a negative result on the bowel issue, they have confirmed that a bacteria called strep viridins (spelling?) is the culprit. They fluctuated his antibiotics over and over, but now he is back on a ten-day regimen of vancomycin. Because we have more chemo this week (vincristine and irinotecan on Monday and irinotecan Tuesday through Friday), I think they will keep us here all week to keep a close eye on Kole. They don't want to play Russian Roulette with his tubes, they're there to help him, and if they're hurting him, they're coming out. The forecast looks like we will be praying for these tubes to be completely cleansed and bacteria-free, so that they can remain in place until Kole's big surgery in November, this will make life easier in regards to Kole receiving the rest of the chemo he needs before the big day. Worst case scenario, he'll have surgery, have the tubes removed, and a temporary peripheral line will go in his arm until the big surgery. On top of everything, he has major diarrhea due to the irinotecan and a severe diaper rash has resulted, and Kole's not that comfortable this week. This round is really wearing on him, but his spirits are still pretty high. Thank you for all of your continued prayers, and I'll keep you posted."


I worked late into the night deciding to put Kole down at midnight.  We celebrated my youngest baby's second birthday yesterday, she is a New Years Eve baby.  So a late night was needed, I knew I would have to draw - lamp light or not.  I worked mostly on background, the walls, a bit of shading on Koles face and shirt and a bit of shading on the spindles.  I've told you all these portraits had connections with each other and me.  I mapped out the dates and it still simply amazes me.  

Leigh   b. 1.7.84 - d. 4.27.12
Houd   b. 1.8.85 - d. 3.2.13
Violet  b. 11.2.11 - d. 11.4.11
Neil     b. 8.1.82 - d. 6.12.90
Kole    b. 11.2.06 - d. 1.11.09

Me      b. 6.13.80 -

Leigh and Houd were born a year and 1 day apart.  Both died a year and month apart.  Violet and Kole share a birthday.  Neil died the day before my tenth birthday.  Kole died around the same time as Leigh and Houd's birthday.  Koles tumor was found within a day or two of my 28th birthday.  It fascinates me how we are truly connected.  We are approaching Leigh and Houd's birthday as well as Koles last day on earth.  A very emotional time for many of us.  I am trying to keep my emotions from shattering into a thousand pieces as these dates approach.