Tuesday, November 21, 2006

Still here...

At Georgetown that is. We're approaching day 14 now, and it looks like we have a few more ahead of us yet. Sophie has been taking a bit longer to heal that we were hoping. But we're all in remarkably good spirits, including Zach, and of course Sophie. Sophie makes friends wherever she goes and usually relies on the nurses and other staff at the hospital for entertainment. This week she is spending time with another patient, Teresa, who is having chemo. Teresa is five years old and has a cast on her arm and one on her leg following surgery to remove a tumor from her arm and repair it with part of her leg. Although she is getting stronger, keeping up with Sophie is tough even for us! They do visit each other throughout the day and even did an art project together. It's nice for Sophie to get to know other kids going through similar circumstances. It's also nice for the parents to have an opportunity to talk about all of the changes in our lives since diagnosis - we take support any way we can get it these days - and who better than someone who is living the same reality!

Well, after a week of trying to get Sophie to eat, we are now on a no food or liquids by mouth 'diet' = or NPO. Apparently, a lymph node in her belly is leaking and needs time to heal. This requires a special drug, Octreotide, and to take it out of action - i.e. no food going in, nothing for it to do. So, for the next week or so, Sophie will rely on IV nutrients called Total Parenteral Nutrition (TPN). We are waiting for our home care company to acquire the drug, and to get us the equipment we'll need to take care of everything at home. Because the Octreotide and the TPN are both IV infusions that are given over 24 hours, Sophie will need to have a pump or some other device that will administer the them continuously.

So it looks like we'll spend Thanksgiving at the hospital. Probably just as well - we'd feel bad enjoying a feast without Sophie anyway! We also have the pathology report which shows that all of the masses removed are tumor and have traces of neuroblastom. They are all classified as ganglioneuroblastoma. This means we will definately need to do another course of chemo (4 cycles, 21 days apart - jsut like last time) to ensure that there isn't anything left t the original site or anywhere else. Although all of the visible tumor was removed, it is possible that there were microscopic traces of tumore left that could grow. We are still awaiting the final pathology review and report but don't expect that there will be new information at this time only confirmation of what we already know. We are scheduled to begin the next round of chemo Dec. 7. The good news is that this schedule will allow us to be home, together for Christmas.

As always we'll post more when we know more - most likely once we get the little princess home! We hope your holiday is happy and healthy. Stay safe and stay in touch! We'll be thinking of you all and are continually grateful that you are with us!
Happy Turkey Day! Gobble Gobble!

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