Day 18

Natalee loves being home!  The weather has been amazing and she has buoyed her spirits.  Her pain is lessening and she may be able to switch to just Tylenol shortly, which is not surprising to those of us who are expecting miracles, but truly a miraculous event so soon after such major surgery.  

She has enjoyed having visitors and really loves being taken for wheelchair rides.  The weather is supposed to be gorgeous this week, so call to see if you can come visit Natalee and take her and the wheelchair out for a spin.  She would love having friends come over to play games too.  The Walton's have some games, but it is always fun to try new ones too.  

I thought I would address some of the questions that Sherri (or myself) get asked about Natalee and where we are going from here.  Kind of Natalee's own FAQ:

Q. Did they get all the tumor out in surgery?

A. The surgeon said that he cleaned it out as thoroughly as he could, however, the cancer can consist of microscopic particles.  Essentially, the doctors do not know if they got it all.

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Q. When we Natalee start her treatment for the remaining cancerous spots?

A. The plan is to let Natalee's body heal from the surgery so that it can be strong enough to withstand the harsh effect of the cancer treating drugs.  They said initially that it could be anywhere from 2-4 weeks after surgery.

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Q. Will she be traveling to Houston to see the doctor who is running the clinical trial as discussed in previous posts?

A. At this point, the oncologist isn't sure that is the best course of action.  The difficulty with sending Natalee to see that particular doctor is that he has never worked with pediatric patients who have RCC.  In fact, that is a huge difficulty at this point.  There are several doctors (even some great ones locally), who have a great deal of experience with RCC, but none of them have experience with the pediatric disease.  The cancer has to be treated much differently in a child than an adult for many reasons.  

The doctors are searching everywhere to try to find a single doctor who has treated a child with RCC and haven't had any luck yet.  There is no data out there due to the rarity of the disease occurring in children.  In fact, Natalee's tumor is the first pediatric RCC tumor that will be tagged for research in the United States.  Kent has read that it is estimated that only 2 children per year are diagnosed with RCC in the entire United States.  

So we are asking people to pray fervently that the doctors will be able to find someone who has treated a pediatric patient with RCC.  

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One last note, as Natalee's condition changes less rapidly, there is simply less to post.  I will post as often as I have information and am still looking for people who have taken pictures from visits or videos that I can post here.  Sherri is also hoping to write something for the blog as well; but obviously, she has a lot going on right now.  She does sincerely want everyone to know how much your prayers have meant for their family, and she is truly grateful for all the help and support. The meals and lawn care and household help has been amazing and a real blessing to them all. Thank you again.