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Aida Rebecca
Lee was born March 1, 2012. She was 4.5 weeks early (still 7 lb 6 oz!) and
spent 11 days in the NICU followed by 7 days on the hematology/oncology floor.
She was eventually (and tentatively) diagnosed with multiple congenital
hemangiomas. There is one on (not in) her brain (that is, behind her eye), and
the largest is on her liver along with countless others of various sizes inside
and outside her body, even inside her bones. For months, the hemangiomas
consumed blood products putting her at risk for bleeding - especially dangerous
for those lesions on the brain and liver. She received transfusions of blood
products on a regular basis for months - even every day for several weeks. The
number of lesions and their locations makes her condition extremely rare....one
of a kind even.
Her
hemangiomas do not behave as might be expected, so we do not know if any or all
of them may completely go away on their own. She has had 3 surgeries to remove lesions from outside her body, which
we hope to be all she needs! The first was for biopsy; the second because
of significant growth and developmental concerns with the added bonus of
genetic sequencing; the third to remove one ulcerated (bleeding) lesion and two
precarious ones. We're told there is still the possibility that the liver
lesions could turn into something else, so all the lesions are regularly
monitored. Miraculously though, the liver lesion has shrunken
considerably which makes us hopeful. Some of the lesions outside have
grown and then shrunk over time, and occasionally new ones appear, but most are
fairly stable. Doctors are unsure about the nature of the bone lesions,
but for now they too are stable.
Though there have been some very dangerous and
scary times, the prognosis is now vague but optimistic. She spent her first
four months on high dose steroids, making daily life tough. Wonderfully, she is
has been off steroids completely since that time and is a much happier,
healthier, thinner baby toddler! She also spent 7 months on
chemotherapy. She is still on oral medications daily that are effective
in controlling the growth of her tumors. For now, she sees the doctor
regularly for blood work, and we expect her to have MRIs every 6 months for years
to come.
We are
incredibly grateful to have been unfathomably blessed by friends & family
and to have experienced God's grace in unimaginable ways since Aida came.
She is absolutely amazing. And adorable. And infectiously
happy. I could go on and on and on and on...
Thanks so
much to everyone who has prayed, read, given & supported us in every
way. God has used you in our lives in ways many people never experience.
It is not lost on us, and we pray blessings on each of you.
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| Aida - 18 Months Old |
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| Aida - 7 Months Old |
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