Sunday, January 4, 2015

Dearly Departed Drawings ~ Kole {day 369}

September 30, 2008
"Kole now has the C-Diff bowel infection. The test they did the other day was negative but it seems in the meantime he developed it. So we are now back on contact isolation, and it looks like we will be here for a few more days. The doctor came in the room and asked if we wanted to go home, she said we could since Kole isn't running fevers anymore, but the regimen was just too difficult, I said. I would have to do the IV vancomycin again at home, every 6 hours with the anxiety of keeping things sterile, which gets to be grueling after a few days. On top of that, there is another antibiotic they are giving him for the bowel infection, in addition to the antinausea meds, and antidiarrhea meds. Plus, I would have to drive up here every day for the rest of the week for chemo. I requested just to stay up here and finish everything we need to finish and be home this weekend. What's a few more days?
Kole's been having some pain, mostly in the bowels and jaw. The vincristine causes him to grind his teeth, and he can't chew gum yet to relieve the pain, so they are just giving him Tylenol. He is also slightly pale, and I think his counts are a bit on the low side and he will receive some blood before we go home.

Please just let me know if you'd like to come by and drop in to see Kole. We've been feeling pretty cooped-up here lately, and God bless the doctor for letting us step outside today into the beautiful sunshine. This is my favorite time of year, and I've been enjoying it through a window until today.

Kole ran in the grass, touched the trees, smelled the flowers, and looked for squirrels. 

God bless you all for your love, we love you all and are so grateful we have all of you to update. Thanks for all your blessings, spiritual, emotional, and financial. And for the wonderful gifts and food. We look forward to relaying positive information to you in the next few days"

October 2, 2008

"Kole has been maintaining quite well considering this is the worst round of chemo he has faced so far, in terms of how sick he's gotten. The irinotecan is nasty nasty stuff and he has been vomiting regularly for several days on top of the diarrhea. The bowel infection is doing better, and he will just have to take some oral meds for a week to finish getting rid of this. The doctor and I talked for quite a while today, she is going to let us go home tomorrow after chemo, which will be in the late afternoon, evening. She said how much better he looks today after the blood transfusion he had yesterday. It was the most blood he has ever received at one time, and he needed it. His counts were really low and he was looking quite pale, and was very tired all the time. She commented on how well he has responded to the antibiotics, and for now, the tubes will remain in place and we will keep praying they last until November 7th with no more fevers!!! That's the big worry, that the surgery would have to be delayed on account of another infection. She also said that she is glad she gave Kole the irinotecan in half-doses over a two-week period, because if she'd given him the whole-dose over a one-week period, he would have been sooooo much sicker. He is scheduled to receive another irinotecan round before surgery. Our schedule is as follows - we get to spend this weekend at home, Monday the 6th is our big CT scan day along with a vincristine push (chemo). Then we will get the rest of the week off. We return on the 13th-17th for chemo (outpatient) and again on the 20th-24th (outpatient). This is the next irinotecan round, and Kole will be given a special medication three days prior to help prevent the nasty diarrhea he experienced this past round. Hope it works. Then we will get a nice long recovery break from the 25th of October through November 7th. This will be dire for Kole to get himself into the best possible shape for surgery. He's lost a little weight, and we want to "pork" him up by this time. The doctor said we will be meeting with the surgeons sometime next week for our meeting. She said when they take a big case like ours, there are so many details and possibilities and we have to be prepared for life after surgery. They will discuss with us the possibility of having a special "mesh" material put in to replace Kole's diaphragm. And our big question now is, will this mesh have to be replaced time and time again as Kole grows? He may need many follow-up surgeries after the "big surgery", or, he may not. I will know much more after the meeting. In the meantime, we ask that you pray for Kole to keep up the good fight and to remain fever-free, as we inch toward the big day. Nerves are abounding........I do feel confident, though, the surgery will be a success. They will do more tests on the tumor after it is removed, I think they may send it away like they did the biopsy, to find out as much as they can about the cancer.

I would like to extend a heartfelt thank you for everyone praying for my husband as well. He has had the best three days in a row since his episode began back in July. Let's pray the trend continues. He has been coming up to visit the hospital and enjoying time with Kole while he can, although he can't stay because he tends to feel very sick when he wakes up and is more comfortable at home. I think he doesn't want me to feel obligated to have to take care of him, too, while he's up here. I'm already stressed. So we are doing day visits for now, and then fortunately we'll all be home together by this weekend!! Praise God. I can't wait to sleep in my own bed. I share a toddler bed with Kole up here, and let's just say my back needs a break!  God bless all and look forward to visiting with you when we get home, after Kole's counts come back up. They are too low right now to do very much, but in a few days.........rock and roll!"

October 13, 2008

"I am here at Hershey undergoing Kole's outpatient chemo with him today. I don't have much time for an elaborate update, he is with me and chomping at the bit, here, to get going, so I'll make it fast.
Last Monday, the 6th, was our CT scan, and unfortunately I cannot report any miraculous news. There isn't much change between the tumor now as compared to the last CT, which was mid-August. It looks as though there may be just some minimal shrinkage along the edges of the tumor. So the last 4 or 5 rounds of chemo haven't done anything to shrink the tumor any more, but they have prevented the tumor from spreading. We are still only dealing with a local tumor. And the tumor has not gotten any bigger. So we have God to thank for that. Also, the rest of Kole's anatomy seems to be "better" than the last CT, as far as his lungs being more aerated and organs are "back where they belong."
The surgeons still have not had a chance to review the case. They had wanted there to be more shrinkage from the last CT scan until now, so we are a bit worried that they won't want to do the surgery yet. I have faith in the surgery team here, and keep praying that they will somehow work a miracle and find a way to remove Kole's tumor in whole and get it out of there. The only other options would be to keep the tumor where it is and continue more chemotherapy, which is unlikely to shrink the tumor any more. Or, the scary aspect of radiating the tumor earlier than we wanted to, to shrink the tumor more before surgery. It is very close to the liver, and the doctor is hesitant to radiate now. She seems to feel the surgery team will lean toward surgery now, even if just exploratory, to remove what they can, and possibly have to go back in later to take away any residual disease. Or just radiate the residual disease. The surgery team should be meeting to discuss Kole tonight or Friday night. I will know by next Monday what the final decision is.
Our week off was wonderful despite the not-so-wonderful news. We had great weather and daddy had a couple of good days to spend with us.

We went to Strasburg Railroad yesterday and Kole had the time of his life. 
We rode trains, big and small, all through the countryside and ate lots of snacks. 
Kole loved seeing "Thomas" everywhere, and all the toy trains, too.

We are back to reality now, with 2 weeks of chemo in front of us, and my husband had another relapse. Well, at least we got the weekend...... Thanks to all of you in your support for us...God has blessed us greatly.  I forgot to mention I got my husband in to see the doctor early, and he is now on a new medication for his nausea. It seems to be working some, but may take a couple weeks for the full effect, so help us pray! Daddy needs some relief. Mommy too."

 I worked late again, feeling pretty tired earlier in the day - sometimes that does more harm than good, working on drawing when tired or sad.  So I turned on my drawing lamp after the kids went to bed and got to work!  I can't even remember what was on the TV because I was so engrossed in my drawing.  It really is like I'm there, seeing his crib, the quilt on the wall, the glint in his eye.  I changed a few things on his face, trying to plump it up a little.  Still not entirely satisfied and more work is due on Koles face.  I worked on darkening tones in his hair and on the crib.  There is still a LOT of detail I have yet to capture, but it is all coming together nicely.

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