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Treatment is being provided at Portland's Legacy Emanuel Hospital which is well known in the Pacific Northwest as one
of the premier cancer treatment centers in the area.
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Legacy Emanuel Children's Hospital is a full-service 155-bed hospital-within-a-hospital on the campus of Legacy Emanuel Hospital & Medical Center in north Portland. It is the largest children's hospital in Oregon and the hospital of choice of metropolitan-area pediatricians.
We serve children from throughout Oregon, Southwest Washington, Alaska and Idaho. We understand that the health care needs
of children are different from those of adults. With more than 60 pediatric medical and surgical specialists and 85 community
pediatricians, Legacy Emanuel Children's Hospital offers outstanding healthcare in an environment sensitive to the special
needs of children of all ages and their families.
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Rebekah's Treatment - We are on a 3 week treatment
schedule. That means we are in the hospital for chemtherapy on week one, weeks 2 and 3 are "off weeks" and
then we start over again with week one and more chemo. During the "off weeks" we have to go to
the hospital every 3 days or so for exams and blood tests. If her counts are too low then we have to stay for a transfusion
or admission. If she has a fever above 100.5 at any time she has to back into the hospital for minimum of 48 hours.
They have told us to expect to spend about 50% of time during our "off weeks" in the hospital. After
the initial 4 Three Week cycles (12 weeks in total) there was no visible tumor to remove by surgery (see panel to right).
The current plan is to continue chemo therapy through February 2006 to attempt to avoid any malignancies or recurrences.
Statistically there is about a 50% chance of recurrence. The survivability of a recurrence in a Ewing's Sarcoma
patient is extremely low with some studies showing less than 10%. October 5, 2005 We
have completed the radiation cycle with just a few hiccups. Rebekah continues to suffer the short term affects of radiation
and we pray dearly that the long term effects, which can be disasterous, turn out to be minimal. From here we continue on her 3 week
chemotherapy cycle until at least February 2006 when more testing is done and we re-evaluate where we are. There may
also be more scans or tests before then but we are not sure. February 2006 We
have completed the chemotherapy at the beginning of February 2006. On February 14th, 2006, Valentines Day we received
the best possible news; Rebekah has been declared "Cancer Free!" When asked about the ongoing side effects and when we would start to see those problems the doctor replied "I
kind of would expected to have already seen them..." While this does not mean that we have not had a lot of them,
but we have not had the most severe things that were explained to us as likely. It is still possible that we might see
them but so far their abscense is miraculous.
The
Future. This remains a bit up in the air but we are very positive. Please see the link to "Rebekah's
Story" for a bit more details. To sum it up we are undergoing tests every 3 months for the next 4 years looking
for a reccurence. After that we are concerned for at least another 5 of leukemia because of the chemotherapy put
into Rebekah's body. Finally, we are praying and hoping that the permanent side effects of the radiation continue
to be minimal. 6 Months Out (September 2006) - an update. During
our 6 month scans in August we found 5 "spots" but are not sure what they mean. Some of the doctor's are
saying "We don't know" and some are saying "Don't worry." We are scared and trying to figure
out what it means including looking into a second opinion.
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One Year Out (Valentines 2007) - an update. The
spots that were found in August took us nearly 2 months, many trips to the hospital and even a trip to Seattle to work
through. The outcome was positive. Although we are declaring "cancer Free" that is based
on what we can see. There is always the fear that something is there but has not grown big enough to see - yet.
That is why we do scans every three months. We are now 1 year out and still going strong pending our next set of scans
the end of February. Rebekah is showing significant side effects from the chemo and radiation and we are learning to
live and deal with those. No matter how bad they are, however, we try to rejoice in them as there are many families
who have lost their precious loved ones to this horrible disease that would give anything to be "suffering" from
side effects. Wow, we can only rejoice for being here. Rebekah's 18 month scans came back clear and she is still "cancer
free." Her side effects from the chemo and radiation are beginning to show in many ways including stunted
physical growth and nerological/mental difficulties but we continue to praise God for every wonderful day we have together
as a family. 22 Months Out (December 2007) - an update.
We had to cancel Rebekah's 21 month scans because of serious flu/cold symptoms that likely would have produced false
positives. They are rescheduled for some time in December and will let you know how she does. Unfortunately the
radiation damage to her sinuses has been severe and we are having lots of problems with that. All of the internals of
her sinuses have been destroyed so she is more susceptible to illnesses plus she is constantly having bloody noses, blood
into her throat and airway, etc. You can only imagine what that does to her. Sometimes the skin under her nose
is almost permanently stained red. Throughout it all, however, she continues to be a strong, happy little girl that
we are blessed to be able to take care of! 27 Months Out (May 2008)
- an update. In March we received some really bad news. Scans of Rebekah's lungs made it appear
that her cancer was back and spread throughout her body. A week later "confirmation" scans didn't show
anything. Doctors (and family) were confused with no choice to do anything but "wait 6 weeks or so and try again." In
addition, the radiation damage to her left eye worsened to where she was blind in that eye. She had to have her
left lens and the damaged tissue cut out and she currently has a plastic lens implant which is giving her some vision.
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Rebekah and her family thank you for your support and prayers.
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