Sunday, December 24, 2006

We wish you a Merry Christmas...

You'd think the prospect of not being home for Christmas would make us sad. On the contrary! Much to our amazement, we are even more grateful for the holiday and for our family and friends than I ever remember before. It seems that when you take away all of the trimmings, there is an amazing spirit left that fills your heart with joy. We are so grateful to be among friends here at the hospital. This has literally become our home away from home for the past few months and we are privileged to spend another holiday with the dedicated and lovely folks here at GUH pediatrics! If we can't be home for Christmas, we can't think of a nicer place to be!

Sophie's blood counts continue to be low, however her spirits are constantly high. The doctors tell us that if she reaches a specific level this evening we can go home before Santa arrives! If not, possibly tomorrow. Gwamma and Paw Paw are coming this afternoon for a Christmas visit which will definitely add special cheer!

Warmest greetings of the season to all - may there be peace on earth or at least in our hearts!

Here's a pic of Zach and Sophie with Santa and Mrs. Claus at the clinic last week. This Santa rides a motorcycle for the Fairfax Police Department when he's not delivering good cheer and presents to GUH pediatric patients!

Friday, December 22, 2006

Bloom where you are planted...

So, it's two days till Christmas, and all through the house, not a creature is peeping - well, maybe Elvis the cat. Yes, yes, we're back in the hospital.

Our stockings haven't made it to the mantle yet, but a beautiful, fresh cut tree stands in the living room - without lights or ornaments yet, but big and fat and smelling like Christmas!

All is basically well, but counts from the past few weeks have shown that Sophie is anemic, so we scheduled a transfusion for this morning at the clinic. This morning, however, Sophie awoke with a fever of 101.9, so we came directly to the clinic anticipating that we will be here for a few days to get IV antibiotics and watch daily counts. Yesterday her Absolute Neutrophil Count was quite low (.18 - normal begins at 8.1). Today the count is up a bit to .5, so it's looking better. We're hopeful that we'll be home for Christmas, but have made arrangements to bring Christmas to GUH, just in case.

We're thinking of all of our friends and family - that's YOU - this holiday, and miss you so very much. May your holiday be happy and healthy, and may Santa bring everything on your list - assuming you haven't been too this year!!

We'll update as we know more! Much love to all!

Sunday, December 17, 2006

Okay, so it's been awhile...

Whew, the last few weeks have been a whirlwind. As if dealing with a toddler with iv lines attached isn't enough, we've been trying to get ans stay in the Christmas spirit and get all that needs to get done, done! As of this moment, there is still a Halloween flag waiving in front of our house, as well as a large 'Happy Halloween' greeting prominently displayed in our front window. Even the mailman has made comment regarding it's untimeliness! Oh, well, just another thing that isn't getting done in our house in lieu of spending time with the kids!

Despite the fact that we are once again in the hospital, this has been a great week for us. Sophie's damaged lymph node seems to have healed up so the drain that was in her belly following surgery was finally removed - Whoo Hoo! She was also on the IV nutrition and since she can also return to a fairly normal diet, we stopped that too! She was IV free for a day and a half or so.

We returned to GUH Thursday (12/14) to begin the second round of chemo. Sophie had a post-surgical nuclear test, the MIBG and a small undefined spot appeared in the location of the removed tumors. We had hoped that all was removed, but were aware that there would probably be some residual tumor left following surgery. Recall after the first surgery, the surgeon indicated that the tumor could not be removed completely as there was not a plane between the tumor tissue and the artery - removal could have caused a catastrophic tear in her aorta so it was not attempted. The hope was that the chemotherapy would cause a plane to form between the tumor and the aorta. This did occur, thus the tumor was able to be removed. The problem is that the tumor is the manufacturer of the plain, not the bodies' healthy cells, so the plain is left behind when the tumor is peeled away. Because of this, we took the advice of our doctors and have begin another round of chemo. We are expecting that this will be her last round!!! We are headed home tonight after chemo - actually right about now, we already have the papers!!! Can I get a Whoo Hoo!

As usual, Sophie is in amazing spirits. She continues to entertain those that surround her, including her own family. She has quite a vocabulary now. My personal favorites... 'mon and 'mere - come on and come here. Also, the secretary here on the pediatric ward is Maria or Ma-wie -pause, pause, pause- a. There is so much more!

Zach is really coming into his own these past few weeks. I believe he truly understands now what is going on. He told me that he was worried about his sister, but that he thinks she will be okay. We think so too!! So will we all!

As the Christmas holiday approaches, we are thankful for you all and your thoughts and prayers. We are hoping to see you soon and to begin reconnecting our lives to yours. We still have a few months to go, but there seems to be another light at the end of the tunnel, this time there aren't any whistles associated with it!

If we don't get back to the blog before the holidays, may health and happiness grace you and your loved ones this holiday and throughout the new year. Peace to all!