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.

Thursday, April 12, 2007

A busy hospital day

I was able to spend a good deal of time reading the protocol for James' leukemia treatment. The papers are in a technical shorthand and there is a good deal of supplemental information. Some of the pages are in a sort of chart form, indicating what treatments and tests or studies will (or should) take place each week. Since James has already completed his first four weeks, this starts with week five. The charts continue through week 130. For each page of the charts (there are seven) there is a corresponding page with more thorough information about how each drug will be dosed and what supportive care will be given. Following these pages, there is a page with a list of four years of checkups following the end of treatment (every month the first year; every other month the second year; every three months the third year; every four months the fourth year). Near the bottom of the page it says for 5-10 years following the end of treatment, have checkups every six to 12 months. The gut-getter is the line below that that says, "Studies to be obtained at relapse."

In addition to the 'roadmap' package, Dr. Keller gave me a 'consent' package too that includes pages listing each chemotherapy drug and its potential side effects by likelihood--likely, less likely and rare, but serious. We have already seen some of these side effects and part of the plan would be to work to minimize the negative side effects that could happen again. To be honest, reading all this stuff is enough to make me want to take James and just go home.

The package is daunting to me. Less so to Vern.

Dr. Keller came by late this afternoon after getting tied up in a conference call came to apologize and ask if I would be available tomorrow morning because he wants to thoroughly go over the whole package with me. Since I have no where more important to be, I'll be here :*).

To this point, the only alternative treatment available for childhood ALL is to do nothing. Or take James home and just take real good care of him--feeding him good food and building him up. Right now, we aren't sure we are comfortable with this approach either, but it bears some consideration.

The next thing to look into is complementary treatment or therapies that might help James better tolerate the chemotherapy he would be getting. This would include nutrition, whole foods, perhaps supplements and fresh air and sunshine. There isn't much in the way of known complementary therapies for childhood ALL either.

The social worker, Kris, spent some time with us today. She went over many programs that are available to children and families fighting childhood cancer through privately funded organizations. Some provide meals for families in the hospital, others reimburse mileage expenses, some provide funds for meals during hospital stays, a few provide some sort of recreational/vacation type opportunities for families or camp experiences for the children, siblings, or families. There is even an organization that takes personal information and preferences of the child with cancer and creates a song just for them.

Early this evening, we got word that James' rectal tube could be removed so we had a quiet little party and afterwards James sat up and played with toys for a while (pictures above--isn't it great to see him play!). It's amazing how much more he feels like doing things now.

Today at lunch and supper he was practically begging for food. Tonight the attending physician, Dr. Briones, checked in and asked how James was doing. I said he was HUNGRY, and wasn't there anything we could do to get the GI docs and the surgeons to talk and decide whether or not James could eat something. He said not til tomorrow. I said, nicely, that I thought that was not right to make a small child like James wait overnight simply because the docs couldn't figure out how to get together. He agreed and asked what James would eat and I said probably anything soft, but yogurt would suit very well. He said, well yogurt is good. Go ahead and just give him yogurt. So we did. And James was a happy little boy.

During our visit with Kris, it came up that we were particularly missing good yogurt and sunflower seeds. This evening, after her workout, she brought us some really good yogurt (which actually made it in time for James to eat it), sunflower seeds, trail mix, and a carrot cake for Katie's birthday, which is tomorrow. We are very blessed.

Good night. Love, Stephanie


Anonymous said...

Wow! none of this was online when I checked it last night-just before you called. Well, I hope all is still going better, and that they give you an idea when you can head for Claytons'. I am sure you are anxious to have a little time being more "normal." John hadn't realized I was talking to you-a hearing thing-and he says to say hello and that he too is thinking about you. Thanks so much for calling. It is cool here but bright and sunny so I'm going to pretend that my knee is fine and clean house! Carefully. Take care. Love, Nan

The Skelly Family said...

Yo're right, Nan. I am very much looking forward to some normalcy. I know other parents have been in the hospital with children longer than I have, but I would like very much to be all the way home. Even knowing we have to be back here with some regularity. Even Dr. Keller commented Sunday that I need to get out of the hospital!

At least everyone is pretty nice here.

Love, Stephanie