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Welcome to Katelyn Benson's website! This has been created to keep family and friends up to date with the latest news regarding our brave daughter.

At the age of three, Katelyn was diagnosed with Neuroblastoma Stage 4, a rare childhood cancer for which there is no cure. She was diagnosed on Monday 16th May 2005 and since then has undergone 8 rounds of chemotherapy, a 5 hour tumour resection surgery, further high-dose chemotherapy followed by a stem cell transplant, radiotherapy and 6 rounds of Accutane (Retinoic Acid). In September 2006, we discovered that Katie had relapsed and so the battle begins again.

Despite the devastating prognosis, we have great faith that our precious daughter will be granted her miracle cure. Thank you for joining us on our rollercoaster journey. Words cannot express the uplifting joy we feel to know we have such a wonderful "team" standing behind us every step of the way. We thank each and every one of you for the endless love, support and prayers.

We are praying for a miracle!!

Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere; and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzle those of us who watch their light.

Wednesday, September 20, 2006

Heartbreaking

I am not normally at a loss for words but lately I have been, please bare with me. Incidently, today is one year since the surgery where Katie's "big tummy" tumour was removed. I'd like to be able to share some good news about how far she has come since then but, really, this past week has been nothing but heartache. All the plans for Katie....going to big school and starting ballet lessons and even attempting tap dance lessons....have gone out the window. We are re-writing the plan, hoping to incorporate as many good things as possible into Plan B. What is the Plan B? Still, we aren't 100% sure, nothing is concrete when you're talking about the dreaded "r" word. The survival rates for relapsed neuroblastoma are grim. We are concentrating on a good quality of life for Katie and, please God, a life that is as long as possible, pain-free and fulfilling. After many lengthy and emotional discussions, it has been decided Katie will receive the TVD protocol. TVD stands for Topotecan, Vincristine and Doxorubicin - it's an intensive chemotherapy protocol administered with wider gaps between rounds than the front-line chemo regimen. This does mean Katie will have another Hickman line insterted in her chest, this does mean she will require regular medications and blood/platelet tranfusions, this does mean she will be prone to infection, this does mean she will not be able to attend school and dance lessons like other 4 year old girls but this does mean we are giving the cancer a nasty kick up the backside. There are few treatment options available but if this route is not the right one for Katie....well.....let's just say I still have a few more tricks up my sleeve.

Katie's operation to insert the Hickman line is on Friday at 9 a.m, it's only a day procedure and we should be home by the evening, free to enjoy the weekend. The first round of TVD starts early next week. Our prayers start NOW, we have not given up on that miracle!

We may have lost the battle but we are going to win the war!!

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Please keep Christi Thomas' family in your prayers. She is now heaven's newest angel. Those in the "NB world" will know the Thomas Team were such an inspiration to us all. God bless Angel Christi and all of our babies who are fighting for their lives.

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P.S. Happy (belated) birthday to Jason. You are the BEST husband and father we ever could have wished for. Thank you for being my rock of support during these dark days.

Posted by Nicole on Wednesday, September 20, 2006