Madison’s story begins at 6 weeks old. She developed three bumps on her head. Following up with the pediatrician and multiple specialist visits Madison was sent for pre-op testing. During this testing it was determined that Madison has multiple tumors in both kidneys.
We received a call from the pediatrician and the general surgeon informing us of results and the need to be directly admitted to the Children’s Hospital for further testing. During our 7 day stay further testing reveiled Madison also has multiple tumors on her lungs, we were told to prepare for a cancer diagnosis.
Madison proceeded with removal of 2 of the 3 bumps on her head and the placement of a Broviac, a central line, to assist with upcoming chemo therapy.
Starting care with the Hematologist a treatment plan has been developed. Due to the rarity of systemic JXG the hematologist has relied on Cincinnati Children’s for Pathology results and a expert in hisiologic disease in Texas.
Madison’s treatment plan begins with chemo therapy medication and steroids once a week for the next year. Having frequent testing to validate Madison is responding to treatment. JXG does not have a standard treatment due to the rarity. There is no cure for JXG even if the tumors respond, Madison is always at risk for reoccurrence.
On a positive note after successful treatment Madison will be able to have a quality of life every child deserves. Enjoying growing up with her twin sister and older brother.
Thank you for your donations and help. Donations made will go to help with treatment and medical costs. Any donations that are above medical expenses will be donated to further research and awareness for JXG.
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