Rebekah was born in December 2001.  She has always been an extremely happy, playful little girl who loves playing outside, talking walks, playing with balls and swinging/sliding.  Nothing makes her happier than to have other kids around with whom she can play with.

Rebekah was a late developer, walking late and even today walking/balancing are difficult.  She is still not very verbal but she does use and understand quite a bit of sign language.  She is extremely intelligent and though she cannot express it back to you, she clearly comprehends more than she can share with us. 

Starting in 2004 we began testing to try and find the source of her difficulties.   What the “experts” told us was that “she has neurological as well as muscular issues and may not develop beyond her current state.”  They now believe that, among other possibilities, she has Cerebral Palsey.  They wanted to do more invasive tests to make other determinations but, because it would not help to confirm a diagnosis or change any treatment until she was older, and because the tests would require putting Rebekah under the dangers of a general anesthesia we chose to forego those tests.  Rebekah started Early Intervention classes and speech and physical therapy. 

Our world was rocked and our perspective on our little girl’s life changed drastically.  We went from worrying about what college she would go to and whether she would find the right man to marry to things that were a bit more immediate.  Instead of worrying about the future we began enjoying every little accomplishment.  Each new sound she made, every time she ran without falling down, being able to “jump” and even climbing on a jungle gym became causes to rejoice.  We realized that looking forward to what she would do in the next few weeks was far more enjoyable than worrying about the long term “future.” 

As an aside I should tell you that I (daddy) am an adoption attorney.  I help families grow through adoption and somewhat often get to work with special needs kids and families.  I have always admired how extra special these families are to be able to take on a special needs child.  Most important I have always said that God only gives special needs kids to families that can handle them and that we definitely never could.  I was totally wrong.  We really began to learn what is was like to have a “special needs” child and learned how many blessings there are in every “normal” day.

Then our world was again turned upside down.  In March 2005 Rebekah had a bump on the side of her head that we believed was from a fall.  It did not go away as her doctor suggested it would and, in mid-April 2005 it grew “overnight” into swelling throughout the entire side of her face.  A trip back to the doctor started a solid week of CT Scans, PET Scans, an MRI, Surgeries, etc.  The final result was that Rebekah has a cancerous tumor in her face, head and neck that has been diagnosed as Ewing’s Sarcoma.  Ewing’s Sarcoma is a bone tumor that can extend (and has extended) into surround soft tissue.  It is very rare in the head and even more rare in children of Rebekah’s age.  For more information on Ewing’s Sarcoma see the tab to the left. 

Rebekah’s cancer had spread so much that it was/is not operable.  The hope was that a 12 week regimen of intensive chemo therapy would shrink the tumor to a point where surgery can have some positive effect.  After the surgery chemo will continue and the remaining parts of the tumor (if any) would be treated by radiation. 

What actually happened was that the extent of the tumor into the sinuses, behind the eyes, nose, ear, etc. made it so that no surgery would be possible at all.  Rebekah underwent 31 days of intense radiation to her head, neck, and face as an attempt to kill any part of the tumor that might still be alive and continues with chemotherapy every 3 weeks until the beginning of February 2006. 

At the end of the initial 12 weeks of chemo and then radiation, the bulk of the tumor appeared to have been affected which was great news.  At the end of chemotherapy in February 2006 we were officially declared "Cancer Free." 

What we can not, however, determine is how many (if any) little pockets of cancer cells might still exist that were not killed by the radiation or ongoing therapy and could spring back to life (recur) once we stop treatment.  Unfortunately this kind of cancer has a fairly high recurrence rate and we won't know for sure until at least 4 years down the line.  We will be having a complete round of scans every three months for the next four years looking for the Ewing's Sarcoma to return.  After that, we will have 5 more years of a higher degree of leukemia beacuse of the chemicals that have been put into her body.  Based on today's treatment information, IF there is a recurrence there is just about a 0% rate of survivability.

Assuming survivability, which obviously we do, there will be ongoing long term problems with the radiation she has endured.  Radiation causes bones and other tissue to grow slower which means that the side of her face that was radiated will grow disproportionately to the rest of her head which will require surgeries and grafts to correct as she gets older.  There is also a pretty highly likely that her hearing and vision will be affected - anything from slight to complete blindness and deafness.  Only time will tell to what extent any of these things will occur.

As of 6 months out of treatment we have seen some pretty major physical affects in that Rebekah's left eye is a different shape and size than her right one and her whole left side of her face is different than her right.  Her mouth only opens about 1/2 the amount of a regular kiddo's mouth and this is contributing to some eating problems.  But over all these she still seems to be able to hear AND see very well and for that we are hugely blessed.

Her 6 month scans have shown some areas of concer and we are trying to figure out what the "spots" are.  Right now, we don't know but will update things as soon as we do.

Although the prognosis is clinically not very positive, we have a great faith and belief that the skill of the doctors combined with the power of prayer will bring Rebekah successfully through this ordeal.  We have already started to see miracles taking place both in Rebekah’s life as well as in the lives of those she has touched.  We have also had another perspective shift and instead of “the next few weeks” we have now learned how important every hour of every day is with our loved ones.