Message from Keith: January 29th, 2008

Today marks Taylor's one week anniversary at the hospital. It's a weird sort of half-life here. Time passes, but it is as if we are outside of it. Day, night, dusk, dawn, all meld together into a blurry existence. This one week feels like a lifetime. We have many lifetimes to come.

I feel like we turned a corner yesterday. Before yesterday, every piece of news we learned concerning Taylor's condition was bad. Certainly, yesterday's confirmation that her tumor is inter-cranial continued that streak. But, we finally learned pieces of good news. Despite being inter-cranial, the tumor has no brain involvement. Moreover, after extensive imaging studies of her head, neck, spine, chest, abdomen, and pelvis, there is no evidence of metastasis anywhere. That makes a huge difference in our outlook and, more importantly, in Taylor's prognosis. Even better, she finally began her treatment which brings us every day closer to a cancer-free and(hopefully more immediately) pain-free Taylor. It is her pain that has caused us the most worry over the last week.

We finally consulted both the oncologist and radiation oncologist yesterday. I will not rehash the oncologist consultation because Kris already has. The radiation oncologist explained the five-day-a-week regimen of radiation she will receive for 28 sessions. Unfortunately, because of the location of her tumor, they must irradiate otherwise healthy brain cells to stop the spread of the disease and ensure its eradication. She will face life-long side effects. Her adult upper teeth will likely never appear, save a few in the front. Her pituitary gland will likely cease working necessitating thyroid replacement therapy and possible doses of growth hormone as she ages. Her ability to mentally process information quickly may be stunted and she may have to take untimed tests, for instance. She may have trouble with memorization. The growth of her cheek bones may be stunted. Her overall treatment may last only 42 weeks, but many of the side effects will be issues for years to come.

It is hard to consign Taylor to the fate that her radiation and chemotherapy will cause. These are choices parents should never have to make. We have no option, though, if we want to preserve her life (and believe me we do!). The silent malevolence growing in her head has seen to that.

Today has been a hard day because Taylor has thrown up a number of times; side effects from yesterday's chemo treatment. In keeping with the turning the corner theme, however, she has stopped throwing up blood. Although there were considerable amounts the first couple of times she threw up, the last time was blood-free. Another bit of hope.

It is impossible to express how thankful we are to all of the people who have extended prayers, good wishes, and offers of help. We will never be able to adequately acknowledge your generosity and articulate our thanks in a manner commensurate with all of the love we have received. All I can say is thank you all from the bottom of our hearts.

2 comments:

Mary Ann said...

Dear Kristin and Keith and Taylor,
This News about Taylor just breaks my heart. I pray for all your family every day I don't know what else I can do to help your family.Buy the way I'm your moms friend Mary Ann from Houston Texas.It is wonderful you have this blog.It will help you so much and also let family and friends stay in touch.
I know because my cousins son Devin has rhabdomyosarcoma also.
He is at Slone Kettering in New York City. He also has a web site on. Caring Bridge. I told your mom I would send it to her if you would like to look at it .
he always signs his site with Thanks for Prayers and Support.
So I know there is a lot of prayers and support coming your way.
Stay Strong and fight this horrible Cancer.
All my prayers and thought are coming your way.
Your Moms friend Mary Ann

Anonymous said...

Kristen, Keith and Taylor

I heard Taylor's story from our uncle Marc DeStHippolyte - his daughter Natalie is one of Taylor's friends. On a very personal level I can relate to all the feelings your dealing with now. On October 25, 2006 our son Daniel (three years old at the time) was diagnosed with stage four Neuroblastoma cancer. He literally had cancer tumors from his head to his toes. After very little success with the local doctors in Washington DC area where we live - we traveled to NYC to get a second opinion from the top hospital in the country for Neuroblastoma - Memorial Sloan Kettering Cancer Center. What we thought would only be a couple days visit to NY - turned into our staying in NY for six straight months. Daniel was given five rounds of ultra high dose chemo, 30rounds of radiation and six rounds of a very tough antibody treament called 3-F8.

As you are experiencing now - we had many tough days and sleepless nights. Nothing can bring you to your knees like dealing with a child who has cancer. A sense of utter helplessness!!

I am glad to tell you that we have a happy story and our Daniel is doing great. He has been in full remission for almost 12 months now. His treatments are done, he is back in school full time and only needs to be scanned every three months. Life is slowly getting back to normal.

As tough as the journey can be - we met some great people along the way: all the doctors and nurses, other parents, and the friends and family who pitched in helping care for our five other kids back in Virginia. Focus on the positives, stay strong, stay close to one another. I told people it was like being an alcoholic - One Day at a Time - thats how you deal with the stress.

Know that we will be praying for a full recovery for Taylor. Feel free to reach out to us at holdensix@msn.com.

Warmest regards
Scott, Landon and Daniel Holden
Alexandria, Virginia