4/25/02
Update
We received word on Tuesday
of a preliminary diagnosis of Ben's condition. The pathologists are
almost 100% certain that this is what he has but we are awaiting confirmation
from a national expert just to be sure before beginning treatment.
All of Ben's symptoms fit into this disease, it is just that the brain
lesions, though not unheard of, are not typical. The name of
the disease is Langerhans Cell Histiocytosis. It is a very rare disease
that is not understood very well. Though, not a cancer, it behaves
like one and is treated the same way. Treatment
involves variations on a combination of chemotherapy and steroids.
It is called an "orphan" disease because it is so rare the government does
not provide funding for research and it is not well understood.
Click
here for an overview of this disease. We are trying to stay positive
that Ben will respond to the treatment and will be cured. We had
porta-catheter installed in his chest so he can receive chemo and medications
quickly with less trauma to him (no need to put iv's in). He is also
having some testing done this week to see the extent of spread of the disease
(we think its not in the bone marrow and he does not have the diabetes
insipidis complication). They are reviewing a full body x-ray to
see if there are any other lesions in his bones. And we are waiting
the opinion of the national expert. There is a chance we may have
to treat one of the brain lesions with radiation to shrink it quickly because
of the rate it is growing could begin putting pressure on his brain.
4/21/02
Update
Ben had brain surgery last
night to biopsy one of the lesions in
his
brain. The surgery went well with no complications and Ben seems
to be recovering well. The procedure was as non-intrusive as possible,
an ultrasound guided endoscopy, of which our pediatric neurosurgeon is
one of the pioneers. Ben has a small incision right at the hairline
and a pencil sized piece of scull was removed. This should grow back
completely since he is such a small baby. They also took another
biopsy of one of the scalp lesions.
We had hoped to avoid brain
surgery, which is why we tried for the easier to get to biopsies in the
hip and the scalp, but these yielded nothing conclusive. This decision
was the hardest we've had to make in our lives, and we can't believe we
were faced with it. But this week Ben's seizure-like
episodes have been increasing in frequency and duration and Friday
he began having trouble seeing and could not see anything for some periods.
We believe these are symptoms of the lesions in his head, and it was clear
they are affecting him and will continue to until we figure out what they
are and treat them. We did an MRI on Saturday afternoon, which showed
the lesions are in fact growing and we met with the neurosurgeon shortly
thereafter. Surprisingly the large lesion at the very center of his
brain was the least risky to get to, so that's the one they biopsied.
It was all very quick once we decided.
The surgeon was able to get
10 biopsies of the lesion. He had pictures of it as well and said
it looked tumor-like. The preliminary pathology just said the cells
looked spindly and no other answers were given. We hope that the
final pathology will be complete Monday. What we are praying for
is that the biopsy will conclusively point to a cause and then we can begin
treating it. Not knowing is the hardest part. We just need
to know what it is so we know how to treat it. So, we are waiting
for Monday and praying.
4/14/02
Update
As many of you have heard,
Ben, now 5 1/2 months old, has been in the hospital for the last week.
Here is the latest of what is going on.
Short Version
Ben went into the emergency
room last Saturday for a swollen eyelid
- in a very short time his eye had swollen shut. He ended up having
emergency surgery to relieve the swelling. He was given antibiotics
to fight the potential infection. His swelling did not drop as fast
as desired, so they ordered a MRI. On the MRI they found several
'lesions'
on his brain (the largest at 2 cm). They also noticed some bone
degradation in the eye area. Because of the size and dispersion,
they ordered a CT scan of his body. They found several 'nodules'
on his right lung and one in his groin area.
They also think some
dime size red spots
on his scalp may be related. All blood, tissue and spinal tap
(lumbar puncture) samples have not shown any sign of infection, but his
eye has responded to antibiotics, and except for the surgery mark is almost
completely healed.
Bottom Line
Currently we are waiting
for a biopsy, on Monday, to get a sample of the tissue from his groin area
to definitively say what this is. There are two potential paths this
can take, infection or tumor. At this point we are praying for an
infection or some benign form of tumor. The Oncologist does not believe
it looks clearly tumor like. The Infectious Disease doctor does not
think it looks infectious. Ben does not fit clearly into any box
right now.
Ben is now in the Phoenix
Children's Hospital - one of the best in the nation. He has been
seen by over 15 very qualified doctors and specialists, and we are confident
they are doing everything possible to get to the bottom of this.
Please keep Ben in your thoughts.
4/11/02
Update
Just to keep everyone up
to date. Ben seems to be doing better, he can finally see out of
his eye. The doctors (and us) are less worried. Attached is a progression
of pictures from this week - you can see the improvement. We have
still not gotten the MRI results back yet - hope to get those in the morning,
and we hope to hear it is just a really nasty bug and not something more
sinister or chronic. Ben will probably be in the hospital for several
more days and be on antibiotics for about 10 days after that.
He is cute even with the
swollen eye! He has been in great sprits.
Yesterday he just was able
to peek out of his eye. Today he can keep it open. The incision
is nicely lined up with the natural crease in his eyelid. We have
had an excellent team of doctors and nurses who have taken his case very
seriously. It is nice to have the right people around at the right
time.
4/10/02
Update
This is not intended to gross
anyone out, it is intended to show how Ben's eye is progressing over time.
Today he seems to be doing VERY well. As you can see in the picture,
the swelling has dropped slightly, the color has lightened and he can actually
see out of that eye. The doctors believe he has turned the corner.
He had his MRI today and we will let you know how it turned out.
4/9/02 Update
We have a bit of bad news,
Ben started getting a swollen eye Friday night (4/5/02), by Saturday morning
we realized it was serious and spent the day at the doctors and in emergency
rooms. He was given a CAT scan and had his blood drawn. He
was then transferred to another hospital and went into surgery to relieve
the swelling. At this point we have no idea what has caused it (other
than an 'extremely' nasty bug). Could be Staph or Strep infection
or meningitis. We are awaiting results of cultures. He is on
three high intensity antibiotics. He is awaiting a spinal tap today
to confirm that it is not meningitis. He currently has a incision
and a tube coming out of his eyelid to facilitate drainage. We have
been in the hospital since Saturday and they think Ben will probably be
in the hospital until weeks end. We will be with him until he leaves
the hospital.
