Friday, January 26, 2024

Neurofibromatosis and giant facial tumors


Hi,everyone amare's chemo medicine that he's been taking since 2012 in which is called rapamune & tamoxifen that he has been taking for about 2 years..we found out he no longer has to take those medications,but he's also started a new medicine called mekinist in which is for cancer patients.we were told by his neurologist in Birmingham al that this medicine has been proven to shrink the tumors in neurofibromatosis patients,so we started amare on this medicine on Wednesday January 27, hoping and praying that this chemo medicine has an dramatic positive change on amare's tumors,only god knows his pain inside,but as a loving and caring parent to amare,I know what he's been threw since the day he came into this world not knowing that the life ahead of him was going to be a great struggle,and I thank god for keeping him on this earth and allowing him to be this sweet,loving and friendly seven year old..he does not see himself any different from others,,but you can only imagine how many rude and ugly stairs that he gets out in public,not to mention the laughter..but threw it all he my son and I would not treat him any differently as I would any other's a lot to handle physically, spiritually, financially and verbally..I pray every waking moment that god heals him and for him to grow older to live the life that he's supposed to have..despite everything amare is always happy!!..and amare's condition requires all of my attention and as well many doctors visits..I admit I want to break down at times but then again ive have to stay strong as a im asking everyone to please keep amare and my family in your prayers.and if you could help in anyway,please do so..we need all the support & love that your willing to give..thank you

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