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In December, 2012, our daughter was diagnosed with a pituitary brain tumor called craniopharyngioma. She continues to fight this disease with humor, laughter, and a bravery from which we can all learn. In January of 2013, Amalia underwent two separate surgeries to relieve pressure and remove fluid from the tumor, followed by six weeks of daily radiation therapy from March to May. We hosted a very successful fundraiser in April, 2013, which covered the cost of all but about $20,000 of her medical bills. For some of her ongoing treatment, we have chosen to seek a second opinion and are now seeing one of her physicians outside of our home state.
** As of November, 2015, we have completed our next round of tests
and received the news that Amalia's pituitary, thyroid, adrenal, and
ovaries are functioning abnormally. After visiting with our
endocrinologist and oncologist, we now know that the growth hormone
injections will possibly last for Amalia's lifetime. Additionally,
she will start to receive several other hormones to help her body
develop and grow. It has been confirmed by several doctors that she
will need these treatments for the rest of her life, that she will not
be able to have children, that this may cause her tumor to grow, and
that her vision will continue to be impacted by her treatments.
This is not the news we were expecting; however, we are putting
our faith in God to lead our family through this latest setback.
Growth hormone injections and other therapies are extremely expensive! Our health insurance will cover a portion of this treatment, but we will still be left with several hundred dollars per month in copays. Because Amalia's MRI schedule will increase to every 3 months, this will also raise our medical bills once again. Our goal is to build a fund for Amalia that she can continue to draw from as she reaches adulthood. Needless to say, this is all going to create a radical financial burden for us - and for her as she grows up and takes on the responsibility of providing for her own healthcare needs.
At this time, we are making no plans to schedule a face-to-face fundraiser, so we continue to ask for your support through Fundrazr.
We are also still selling gray wristbands to raise awareness of pediatric brain cancer and tumors. Please contact us for information on how to purchase or assist with selling our wristbands.
We appreciate your love and support as we move forward with Amalia's ongoing treatment!
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