Monday, June 27, 2005

Monday, June 27, 2005 7:50 AM CDT

Update Tuesday, June 28, 2005

Nathan's port surgery is scheduled for 7:30 tomorrow morning. He should be home by early afternoon.

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Monday, June 27, 2005 6:23 PM CDT

Ok - well we have a plan in place.

Tomorrow Nathan will meet with the surgeon here and town and Wednesday morning he will have a port placed. A port goes under his skin and then is accessed by a special needle when they need to use it. This needle can stay in for several days. When not in use he can swim and bathe and play as usual. We felt this was a better option for Nathan than having a broviak. He may still need a broviak later if his disease progresses. The surgery is out-patient and he will come home afterwards.

Friday morning he will go into the hospital and start chemo. He will have chemo for four days. For those interrested he will be having Vincrsitine,high-dose Cytoxan, and Topotecan. He is only doing it in the hospital because otherwise he would not be able to start chemo until Tuesday in the clinic and we did not want to wait that long to begin.

This is strong chemo and he will lose his hair and his blood counts will bottom out. We expect he will need blood and platelet transfusions and he will be neutropenic (no/low white blood cells) for several days.

When his counts recover from chemo we will travel to New York and he will have surgery. I would imagine they will do some scans preceding surgery. They will do intra-operative radiation therapy during his operation where they can directly radiate the area.

At this time I do not know whether or not they will take his kidney out. I imagine they will not make that decision until we are in New York.

What happens after surgery depends on many factors and so after surgery we wil reevaluate his disease status and go from there. With relapsed neuroblastoma there is no standard plan to follow. Decisions are made and changed on a daily basis.

We have told Nathan. He took it really well. He wanted to know why the tumor grew again and he had some questions about the port. He then asked to get back to watching Scooby Doo and I am sure he is mulling it over with more questions to come. In fact - as I write this I hear him asking Luke more about how the tumor grew. So - we will just try to answer his questions as they come. We hope there will not be too many that we will have to answer by telling him we don't know - because that stresses him out - but as I just wrote - there is alot we won't know. Julia was concerned about who was going to take care of her and we reassured her that when possible she would have either her mommy or daddy home with her.

So - we are ready to start the battle. We feel very confident in the doctors' decisions and we know we have a good team of doctors in place.


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We have actually had a good weekend. We knew that there was nothing to be done until today and so we just had a normal weekend. Friday night Luke and I had already planned to get a babysitter and go to see Star Wars and we decided that we should not change those plans. Though I certainly was thinking of things during the movie it was a good diversion.

We did errands and church and just had a normal good weekend.

Ok - here is the very preliminary scoop. I just got an email from the doctor in New York saying they recommend one round of chemo and then surgery. He said he sent the details to Nathan's local oncologist. I will call him this morning and get him to check his email and then find out the details. I am assuming we can do the chemo here at home.

I will update this later with more details when I get them.