Update from Kristin: March 11th, 2008

Everyday presents a new hurdle! Last night, Taylor spiked a fever and her heart rate was in the 170's. Radiation, the port placement, AND chemo were all postponed. A chest x-ray was taken and it seems that Taylor has a little case of pneumonia. The doctors are not overly concerned with this and feel that antibiotics should take care of it in a day or two. We are not sure when they will decide to do the radiation, port, and chemo but hope it will be in the next couple of days.

Her heart rate has dropped a bit today and she is in pretty good spirits. She even made it down to watch a magic show today. She has been such a good sport and I am so proud of her.

The past 2 days have been pretty procedure laden: yesterday they had to replace her IV and she has had numerous pokes to have blood drawn. She has been so very brave. The chest x-ray also showed that the NG tube was a little high so they had to untape it and push it down into her stomach further. To do this they had to remove the tape that was holding the tube in place - it turns out that having tape removed is far worse than any needle! But they were able to correct the problem and they are hoping that it will resolve some of the stomach upset that she has been experiencing over the past few days.

I have to say that it is really easy to get frustrated because it seems like Taylor can not catch a break. However, with the big picture in mind, there are still a number of people walking through these halls that currently face much larger and more permanent obstacles than Taylor and they still manage to put smiles on their faces.

Today we had the opportunity to meet a boy in the playroom named Enzo. Enzo was treated last year for a rhabdomyosarcoma that sounds very much like Taylor's. He had his tumor in the exact same location and he also had an intercranial extension just like Taylor. Today, Enzo is in remission! He was just back at CH today for a scan. It was great that Taylor had the chance to meet him - to see how he was running and playing and that hopefully in a year from now, she will be doing as well as he is. We will try to keep everyone posted. Please continue to pray for Taylor!

3 comments:

JB said...

Prayers, love and tons of hope. Please know we are all thinking of you all ALL the time.

Anonymous said...

Kristin and Family,
Taylor is constantly in my prayers and sending positive thoughts and love to you all. You are such a remarkable, caring, loving and strong family. Wishing some rays of sunshine and brighter days ahead for you all.:)

Hugs,
Sheila Garber

April's, Aunt Nancy said...

Everyday I pray for Taylor and look forward to the day when she is home and 100% well. I am thinking of her all the time and send lots of love and good wishes.
April's Aunt Nancy