Monday, November 27, 2006

Rounding out week three...

Okay, so we're still at GUH! Sophie was allowed to start eating again yesterday and she dug right into her fat free diet! Today, however, she is not taking the whole diet thing very well, but we're working on getting her some flavor. At this very moment she is standing on her head in her crib after waking from a two-hour nap. All in all we are coping quite well with our new normal, but are also looking forward to
being home soon!

We will have our home care service at the hospital this evening to show us how all of the medications and pumps will work once we're home. Hopefully we won't need to be on themeds for too long. If all goes well with the eating we'll go home tomorrow - Woo-Hoo !! Just so we don't get to comfortable at home though, we are scheduled
to be back in the hospital next Wednesday (12/6) for some post-op baseline tests and to start the next round of chemo. I can't say enough how great the folks here are and how easy they make it for us to be here so much.

i hope to post some recent pics soon - thanks for reading! We hope we can see you soon!

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!

Thursday, November 16, 2006


Okay, so this may not be an exciting word or concept for you, but we have been waiting - not so patiently - for Sophie's stuff to start working again, and this morning they did!!! WooHoo ! As you can imagine, she is in a much better mood now, pretty much back to her old Sophie-self. Whew! Today marks the seventh day in the hospital - ugh, and there's probably two more to go. Since she just started eating this afternoon, theDrs . will want to watch for at least a day to make sure that everything is working as it should. Sophie also still has a drain in her abdominal incision that will need to be removed, most likely Friday (hopefully just before discharge!)

So, before the magical poopie, we were trying to cheer our little sweetie up with a variety of things - we tried her big brother Zach, but this had only the opposite affect as he was so happy to see her that he wanted to be as close as possible
- not whatSoph had in mind! We did manage one adorable pic of them last Friday night when she was still in the PICU.

We went for a walk, tried games and toys and coloring and crafts, nothing worked until a very talented young man, Robbie Schaefer, came to the pediatric ward to entertain on Tuesday. He played his guitar and sang enchanting and silly kids songs - Sophie was hooked! Apparently, Robbie is Sophie's answer to JustinTimberlake ! She is like a groupie or something. Robbie generously gave us a copy of his CD - and he even signed it! Sophie would not let it go. She even fell asleep for her nap holding the CD case close (see pic). I have to admit I was equally impressed with Robbie's silly and endearing songs (I didn't sleep with the CD though!). Check out Robbie's web site for a sampling of his songs and to learn more.

Well there is a bit more clinical update pending but I'll save that for the next post - time for bed now. The news is good so far, we'll probably do another round of chemo just to be safe, but it seems that they got it all! Until next time... be safe and well. We think of you all often and can't wait to see you again!

Friday, November 10, 2006

The morning after...

So Sophie is recoving nicely from a much longer than anticipated surgery yesterday. the initial estimate from the surgeon was five hours, and they were in the operating room for more than eight. The extra time allowed them to remove all of the primary tumor as well as the two additional masses thought to be lymph nodes. The samples have been sent for the biological studies and we now patiently await the results to see our next treatment steps. We are hopeful that we will have the results within a week or so.

for now, sophie is resting comfortable in the Pediatric Intensive Care Unit (PICU) at Georgetown. She is hooked up to a bunch of machines and monitors with a foley catheter to remove urine, and an NG tube in her nose to remove the yuck from her stomach.

It looks like we'll spend another night in the PICU and then move to the regular pediatric ward tomorrow. The current plan is that we'll be here until about Tuesday, but that depends on her progress over the weekend.

We'll post more when we know more and maybe even a few pictures. Until then, keep the prayers and thoughts coming! Thanks to you all and much love!

Wednesday, November 01, 2006

Now beginning phase two...

We met with the doctors last week and verified what we had gleaned from earlier telephone conversations. As a result, Sophie is confirmed for a second-look surgery on November 9, at 9:30am. Meeting with the surgeon especially provided a clearer picture of where we were (following the last surgery) and where we are now.

Apparently, during the initial surgery, back in July, the surgeon determined early on in the procedure that he would not be able to remove the tumor completely without unnecessary risk. At that point, he made a decision to only take what he needed for biopsy and to possibly return later, after treatment, for a second attempt. The doctors anticipated that the course of chemo has made changes to the tumor(s) and that it may be possible to remove all of the tumor, and the other masses, this time. We are told that sometimes the chemo creates a membrane around the tumor that would
allow for a plane between the mass and the artery, making the removal less risky. We are also told that this should be Sophie's last surgery as there would be no benefit to trying again if it is not successful this time.

Once pieces are taken, they will be sent for a biology study as we did the first time. As noted in the previous post, this, combined with the level of surgical success, will tell us our next move. Fortunately this does not affect her prognosis. However, it probably will extend the length of her treatment.

It has actually been an okay week or so with Sophie off antibiotics and with high enough blood counts to be a "normal" two-year-old for a little while. Halloween started on Saturday with our annual neighborhood gathering, and last night was great fun for everyone. Zach was abionicle robot and Sophie a fairy-somthingerother. Unfortunately Mike became ill on his way home from work Halloween night and was stuck in bed for the bulk of the festivities. He was close to fine this morning except for being a little bummed that he missed all the fun!

We hope your Halloween was joyful and safe. Look for another progress-post this weekend (pending access in the hospital). Until then, here are more pics to enjoy.