Quick Lower Family Update

[Chad T. Lower]

I am thinking that all of you know that our daughter Isabella was born
with a hemangioma on her face between her nose and upper lip. I am
thinking that most (if not all) of you know that our daughter
Alessandra has a hemangioma on her back by her shoulder blade and is
starting to get some small red dots on the back of her head. At the
advice of our current (and new) physician, Suzy took the girls to a
specialist in Danville today. The results were mixed.

Ali's hemangioma is superficial and the least problematic of all the
types of hemangiomas. The doctor said that during the first 6 months
of life, the hemangioma will do its thing and, since Ali is almost 6
months old, it is pretty much done growing and will be subsiding
slowly after that. The small red dots on her head are hemangiomas
that are growing under her skin on her scalp. The hemangioma is big
underneath, but all we are seeing is tiny spots that exposed
themselves. Again, the doctor saw no real cause for alarm there.
However, he did find a cyst the size of a pea on the back of her
head. He is referring that back to our regular physician to
determine what will be done with that. Throughout the day, we see
Ali grabbing towards her ear, so we thought she had an ear
infection. Eventually we noticed that she was really reaching behind
her ear, so we thought maybe the red dots on her head were bothering
her. Come to find out, it is probably this cyst that is the cause of
her pain. The specialist said more that likely, they will just give
her a local and cut the cyst out. She will scar, but it will be on
the back of the head under hair, so not noticable.

Bella's hemangioma is the worst kind of hemangioma a person can get.
(The doctor said we have seen the best and worst kinds with our
children.) When reading what the doctors did in Michigan, it seems
like little was done correctly. Although we were referred to
specialists in Michigan, they were specialists in dermatology. This
doctor is more a specialist with hemangiomas. He said the steroid
shots were a good first step, but after a lack of progress, we should
have moved immediatley to laser surgery AND oral steroids since oral
steroids will help shrink the tumor, but only until age 1. Well, the
laser surgery wasn't started right away, and the oral steroids weren't
added until later when she was 2 and 3--well past the time it would be
beneficial. The Michigan doctors (all of them, cause we asked every
one) that we would not be able to have it surgically removed because
it was "too deep." The doctor she saw today said that when they
noticed the laser surgery wasn't helping, that they should have
surgically removed it then before she turned 3 to help minimize
scarring and her memory of the surgery. He said that the hemangioma
will never go away and never shrink. He is sending us to an even
more specialized specialist in Philadelphia (we could go to Boston,
but he knows the dr in Philly), but said more than likely, that doctor
will want to surgically remove it as soon as possible--probably as
soon as school lets out. Scaring will be more apparent than if she
had it done earlier, but her young skin will help hide it more to have
the surgery now that to wait until she is older. Her memory of the
surgery will probably also be less severe the sooner we have it done.

The only "problem" the doctor saw would be the insurance company.
Usually when the surgery is perfomed before 3 years old, it is deemed
medically necessary and the insurance company pays their portion.
After 3, and the insurance companies look at the proceedure as
cosmetic surgery--which is never covered.

Since I don't have to teach on Fridays, I think we are going to try to
schedule our Philly appointment for a Friday, so I can take Bella;
Suzy will stay here with the Chi and Ali.

I ask for your prayers for our children who are enduring this as well
as the doctors that they have wisdom and clarity of thought regarding
the proper treatment from this point forward.

ct