One Big Adventure
An opportunity to log in some of the thoughts and activities of our homeschooling family of eight. We love books and good food and aspire to a Christ-centered, multi-generational, agrarian life.

Sunday, April 15, 2007

Various and sundry news items

A taste of home

We had a great visit with the home folks. Lots of snuggling, as always. We watched another Fred McMurray movie--Follow Me, Boys. I thought it was a great family movie. James thought so too. He laughed and laughed. The children enjoyed 'riding the bed' a few times (til mean ol' mom put the kibosh on that one :*) ). Vern and I were able to make a quick run to the nearby Whole Foods Market, where we picked up some good quality yogurt and milk for James. While we were out, it began to rain. It was a gentle, warm rain. The likes of which we hadn't experienced in seven years or so. It is good to be 'home'. We also noticed that the architecture and landscaping here are different--and we like it. I kept telling Vern I should have brought the camera to take pictures of all the lovely flowers and and trees. But I had left it in the room. It's okay, we'll be back.

On the way up, the home contingent picked up a couple of toys that James could play with here. He sure enjoyed them and I think he will get a lot of good playtime with them. They also brought up a Mr. Fixit Bible Adventures DVD we ordered from Timberdoodle during their 'damaged book sale in February. It was worth it! There are 12 episodes on one DVD and they are captivating to James (and the other children) who aren't used to a lot of excessively fast-paced, flashy programs. Last night, Katie, James and I watched the whole DVD. I'm guessing we'll do it again.








No porta-cath yet
James had to get an IV placed in his leg yesterday since I pulled out his Hickman. It took four big people (three nurses, plus Katie) to hold that strong little boy down :*). He wiggled just enough to foil the first IV, but Leah got it on the second try. Since James was an add-on for his surgery yesterday, he ended up getting bumped by more important cases. He was moved to Monday, but, as I understand it, is still and add-on. Please pray they would be able to get his porta-cath in Monday. Until they get it in, he has to be 'stuck' for his every-morning lab draws. And that is no fun for anyone.




James' nurse yesterday, Dr. Keller and the fellow for this weekend.



The heavy medical stuff

We also sat down with Dr. Keller. He went over the road map with both of us and Vern was able to ask all his questions and here the answers for himself. We talked a lot about James' fragility and how easy the drug toxicity affects him. We appreciate Dr. Keller's sensitivity to James and the fact that he realizes and is wide open to the fact that there may need to be some adjustments to James' treatment depending how he handles certain aspects of it. While Dr. Keller does say he can't recommend any particular complimentary treatment options, he is in favor of lots of good healthy food for James--of course, we are too. Vern felt comfortable enough that he went ahead and signed the consent forms. While I am not sure I could have made that decision on my own, I support Vern fully and will be doing all I can to support Vern by helping James handle the treatment and get lots of appropriate good things to build him up.


The other thing we talked with Dr. Keller about is James' feeding/pooping issues. This is really important because we all believe that the bulk of James' problems with the chemo are due to the toxicity issues he has with a drug called vincristine. It is very likely that James already had these underlying issues, but that we were able to keep them under control by serving him plenty of good yogurt to keep lots of healthy flora in his system as well as regular prune juice to keep things moving along. However, the vincristine throws the balance further out of whack as it attacks the nerves of the intestinal track almost as well as it attacks the leukemia cells. In most normal children, this causes constipation. In James, it seems to come closer to an intestinal shutdown. The treatment protocol we have chosen for James is a slightly older protocol that uses less vincristine than current protocols, but it still calls for vincristine and we are all concerned about how James will handle this.


In the meantime, we need to get in place a 'rescue protocol' that will help James keep moving things through so we can nourish his little body and keep him hydrated now and later on. So we would ask you to please keep praying for wisdom to sort this out and find something that works for James and for James to poop regularly. I know in my heart that God cares very much about this little 'unmentionable' item in James'.
James will start on his roadmap tonight.
If the porta-cath goes in tomorrow, and we can come up with a plan to keep James hydrated independent of his IV fluids, we might be able to go home on Wednesday, Lord willing.


Love, Stephanie

3 comments:

Jamie Loker said...

Hey, Skellys. It's been great to check in and read all the happenings and progress with James. The photos are precious! What a sweetie he is, even with a "bad mom" (sorry, that one made me smile. you are anything BUT a bad mom, Stephanie).

One of our all-time family favorite movies is Follow Me, Boys! I'm glad you were able to watch it together this weekend.

The Skelly Family said...

Jamie,

Thanks for checking up on us. I am SO thankful to have sweet photos to post! Thanks for leaving a note and letting us know your here!

Stephanie

mary mccarley said...

Stephanie,
Can you send me the address where the kids can send a few cards, etc... to James. We're keeping you all in our prayers.
Thanks,
Mary