Saturday, December 20, 2014

Dearly Departed Drawings ~ Kole {day 354}

July 14, 2008

"Good evening...Kole is playing contently with his new Thomas the Train track and railcars daddy picked up at a Walmart bargain. This evening has gone rather smoothly, with Kole eating a decent supper and still drinking well. He had his vincristine push, and also is finished with the cytoxan already. They are continuing to give fluids and mesna to protect his bladder. He is now on the 48 hour doxorubicin drip, which stinks, regardless, but even more so because he is pretty much stuck in one spot attached to a pole. Not such a great range for a 20 month old. But we are dealing, like we do. Thanks so much for the messages tonight, I realized after I read them and my spirits were lifted so high, how much I missed them when I was home. I know they are there in mind and spirit, but it just feels so good to see them and soak them in everyday. Thanks for loving us so much. With all the obstacles we have been facing, we still feel so blessed. I have to get baby bear ready for bed now, teeth brushing and soforth. God bless."

July 15, 2008

"Putting Kole to bed last night turned out to be more of a feat than anticipated. Since all this hospital chaos started, he has developed separation anxiety issues on top of fear of the crib, which is normal for a child going through this, just not what I am used to from my normally independent toddler. But by 1am he finally laid down quietly and gave mommy and daddy the opportunity to get some rest ourselves. This round of chemo is going really well so far. There haven't even been any behavior changes, he is still eating really well, no nausea, and the classic side effects seem to be at bay, at least for now.

We are enjoying our "old boy" back! 
He is happy and smiley and full of energy and lots of new words. 

We started a log book of all the words Kole can say, and we're up to 60, so we feel he is doing really well. The doctor came in today to speak with us about anything and everything, as usual. We asked about what they've decided to do for the next round, and apparently, she feels that giving Kole more ifosfamide isn't really in his best interest. She said that normally it is older pediatric patients that experience the adverse reaction to the ifosfamide (that's my boy! the rare one!). Another option is to replace the ifos. with cytoxan, which he gets without a problem. So that is what they plan on doing. She would rather replace the chemo and have him be able to get a full round in, instead of not making it all the way through the recommended 5 days (with the ifos, he lasted only 3). She said they may try the ifosfamide again at a later time if necessary, but for now, the cytoxan is in the same family of drugs, and a safer bet. So I trust her. She is really pleased with Kole's progress. They intend to do another echocardiogram soon to see how far the tumor has pulled away from the heart, but they won't do a CT to check the tumor size for probably another month. She wants to limit the radiation exposure. She also said that Kole probably won't need radiation at all (hopefully). "

July 16, 2008

" Finishing up on what I was trying to say last night....It is such good news to hear that radiation may not be necessary. I am under the impression that they try to limit the radiation exposure for children as small as he is. The doctor explained that she has had several Rhabdo-kids in her experience here, and all of them have had tumors like Kole's (embryonal rhabdo or ERMS) which have responded so well to the chemo that there was no further need for radiation. She expects Kole's tumor will follow suit. Seems these fast growing tumors are typically fast to shrink as well. One optimistic story she gave us was about a boy who had a tumor just like Kole's, but in the lower abdomen, and he also had cancer in his marrow and throughout his body. She said after his chemo protocol was finished and they went in for surgery, there was hardly anything to remove and they never needed to radiate. This boy is still cancer-free and doing well. She said all cases are specific to each child, as each child is an individual. But at least that gives us a lot of hope that this thing is going to SHRIVEL UP like the desert and BE GONE!!!! We spoke with her about the surgery, my husbands father has been pushing the issue of how skilled are the pediatric surgeons here and have they done a surgery here like this before? She said that she has worked in many institutions through her career, and the surgeons here are the best she's worked with. She said they are board certified and have 4-star rankings (whatever that means) and removing tumors is what they do day in and day out. She said that even though this is a teaching hospital, not to worry about students being directly involved in the procedure, they may stand by and observe but won't be participating, only the most experienced surgeons will. She is excited to see the next CT, although it won't be for 3 or 4 more weeks, to see how much the tumor is shrinking, to see how much relief the surrounding organs are getting, and to finally see the origination of the tumor. Hopefully we'll just have a tiny little lump/stalk to remove. I feel very optimistic today, praise the Lord!! Kole slept awesome last night, actually fell asleep at 8!! And slept all night! ????????? This early retirement is unusual for him. We got a good sleep ourselves and arrived here early this morning. We took Kole (pole and all) down to the play area to check out the trains. Kole's chemo will finish dripping this evening around 8pm. They said assuming he is drinking enough fluids and eating, it's up to us whether we want to go home tonight or stay till the morning. I think we may discharge tonight and just go to the Ronald McDonald House w/ Kole to sleep then wake up and leave. It's a lot to do in one night with the discharge, packing our stuff back up here, then again at RMH, and not to mention there's no housekeeping at RMH, you have to clean the rooms yourself before you leave. I don't know how I am going to feel about cleaning the bathroom, doing the laundry, and wiping our fridge out at 10pm. So we may just come home in the morning. It's so nice to read all the new messages, keep 'em coming, they mean the world to us! Hopefully I will have some new pics of Kole to post soon, his hair is totally gone now, just blonde peach-fuzz if you can believe that! Whose blonde child is this!?! Wishing all a beautiful day in Christ's light...."

 Worked more on the basket today - there is a story behind the photo I am drawing.  I will of course share it with you on the reveal day. 

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