Team Princess Livvy - fighting NF1

My Daughter Olivia is 3 yrsold. She has NF1 a condition that causes tumors in and on the body. Olivia was diagnoised with a Larnyx neurofibroma plexiform in Oct 2013. Olivia has had 3 surgery's so far and will be going back March 17th for another to place a Gtube so she can get nutrition to grow and develop. We have many many Doctor's appointment in Boston and much time that we are not able to work just to care for her. She requires a Cpap to breath while sleeping , she has severe obstructive apnea where she stops breathing due to the tumor in her airway. We may soon be faced with the fact she may now require a tracheostomy to breath. I am trying to get help with sign language and other ways to comunicate with her so we will be prepared. We have been accepted to a clinical trial in IN . This will require time off as well as trip expenses. This could save her quality of life. This tumor is inoperatable and could be life threatening. We worry minute by minute if she will have an emergency with her airway. Olivia is a strong child who loves life. Any help would be greatly appreicated .I will up date as soon as I know more on her trials.
UPDATE  8/2/15
After spending a year in a clinical trial for GLEEVEC -CHEMO
We may have slowed dow the growth of the tumor but it still is growing. Her Chemo ended June 22,2015
We flew out to Indiana @ IU, the final MRI showed slower growth. We also now learned of a Bone cyst which maybe nothing but that , follow upMRI being done in September 2015 for her neck tumor as well as a dedicated one of the foot. I hope to be able to start her on a new chemo after September called :
Trametinib (trade name Mekinist) is a cancer drug. It is a MEK inhibitor drug with anti-cancer activity.[1]

It inhibits MEK1 and MEK2.[1]

Trametinib had good results for metastatic melanoma carrying the BRAF V600E mutation in a phase III clinical trial. In this mutation, the amino acid valine (V) at position 600 within the BRAF gene has become replaced by glutamic acid (E) making the mutant BRAF gene constituitively active.[2]

In May 2013, trametinib was approved as a single-agent by the Food and Drug Administration for the treatment of patients with V600E mutated metastatic melanoma.[3] Clinical trial data demonstrated that progression on single-agent trametinib occurs within 6 to 7 months.[4] To overcome this, trametinib was combined with the BRAF inhibitor dabrafenib.[4] As a result of this research, on January 8, 2014, the FDA approved the combination of dabrafenib and trametinib for the treatment of patients with BRAF V600E/K-mutant metastatic melanoma.[5]
This will be used off label if approved by the team to move forward.

I will keep you posted

Livvy's MOM

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Livvy Latham 
Wareham, MA
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