Jessie Claire has Neurofibromatosis Type 1 and brain tumors involving the optic pathway, chiasm and hypothalamus. After 88 chemo treatments from 15 months old to 4 years old, she has been chemo free for about 6 years.
In February 2014, we learned that Jessie Claire is now Fighting Moyamoya Disease. She is scheduled for Brain Surgery 3/19/14.
When Jessie Claire was only a few weeks old, Brent and I began to see "birth marks" appear all over her little body. By the time Jessie Claire was 10 weeks old, she was diagnosed with Neurofibromatosis Type I (NFI). This is an unpredictable genetic disorder that can cause tumors any place on the central nervous system at any time. The "birth marks" are actually cafe-au-lait spots and a sign of NFI.
The news that Jessie Claire had NFI was heartbreaking but we were thankful to God that she was diagnosed at such an early age so that she could be monitored for tumors by specialist.
Jessie Claire is now 17 months old and she receives MRI's on a yearly basis. The week of Christmas the NF specialist reported that Jessie Claire's latest MRI revealed that she has a tumor on her right optic nerve. The news of the tumor made for an emotional Christmas. Also, we had to wait for a month to see the Neuro Surgeon and get specific details about the tumor and treatment options. This was the longest month of our lives. However, we were able to find peace in knowing that God is in control and as much as we love our precious baby, God loves her even more.
Jessie Claire saw the Neuro Surgeon on Jan. 22. The doctor was a wonderful man and we feel confident our daughter is in great hands. Dr. Boydston made it clear that Jessie Claire's tumor is not fatal and she will not go blind with treatment. However the tumor is much larger than we thought and she will require Chemotherapy to shrink the tumor. Basically, Jessie Claire has a bilateral optic pathway tumor.
If you could see Jessie Claire today, you would never realize she has a brain tumor. She is a happy and loving child who often blows kisses and gives big hugs. She has the cutest personality and her daddy claims "she is very entertaining".
We are waiting to hear from the oncologist about when Jessie Claire will start chemotherapy. We'll update Jessie Claire's website then.
We are so thankful that when it comes to our little Jessie Claire, God has shown us his hand at work. He is in control and we know that God will see Jessie Claire through this difficult time.