If you've watched the video from the Detroit NF Benefit, you saw that we had one bad night where we were instructed to go to the emergency room after Philip spiked a fever and was sick to his stomach in October. It was the start of a strep infection that was quickly put down with the usual antibiotics and a day in bed, surrounded by a pile of beloved books to read. Philip's favorite activity is reading and we estimate that he reads anywhere from 300-400 pages each week. We are surprised his Kindle doesn't smoke from how often he reaps the full benefit of his Amazon Prime membership. Since that one bad night, Philip has only been sick to his stomach 3-4 more times. That placed him in the minority among his friends who got the stomach bug or worse this winter.
November was his first MRI after starting oral chemotherapy, his sixth scan (technically seventh since he also had a PET scan in 2013). The initial radiology report ruled out the scary stuff like malignancy or compressed blood vessels and nerves. Dr. Reddy reviewed the MRI with us and to the naked eye, it did not appear any larger than in his previous June 2014 MRI. It is important to know that the way in which Philip's tumor is officially measured is by volumetric analysis, something that is much more accurate than the traditional 2D MRI measurements. The image below shows why the shape of an NF plexiform tumor makes it difficult to accurately measure growth between different MRIs. Please note that the image below is not Philip's tumor.
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| From http://www.nfmidwest.org/volumetric-measurement-of-tumors-in-neurofibromatosis/ |
The volumetric analysis showed that the Philip's tumor still grew between June 2014 and the November 2014 MRI, but it was the slowest recorded growth since 2012. Clearly, something has changed and our medical team believes it is because the Gleevec. In January 2015, his dosage was doubled from 200mg per day to 400 mg per day. Again, other than some slight increases in crankiness and lethargy, you would never know Philip is taking chemotherapy. He is unbelievable. So that is all good news!
We are noticing an increase in the appearance of sub-cutaneous NF tumors on Philip's body. These are a different kind of NF tumor than the large nodular plexiform in his neck. They do not pose a risk of turning malignant although some may become painful during his lifetime in a way that surgery becomes necessary. This is why we had one tumor on his forehead surgically removed in March 2014. He has a few on the back of his scalp that make brushing or combing his hair painful if you are not careful. There was a time when these tumors were my worst nightmare due to where they may appear over time and what mean spirited peers might say or do. Now, these are the least of our concerns, although we are keenly aware of how they may make him more self-conscious over time. It's just another aspect of NF that we hate because we can't stop them from happening.
We are gearing up for an April 1st MRI that we hope will show an even greater impact of Gleevec therapy. We understand that the odds are stacked against us based on the experience of other NF families we know and love that have been here before us. But, we are remembering the relief we felt from the November MRI that showed slowed tumor growth and hoping for the same outcome or better this time.
Thank you for your continued prayers and support of Children's Tumor Foundation! The 2015 Birmingham NF Walk will take place on October 18, 2015 at Veteran's Park. If you would like to join or donate to Team Moss, select the blue "Join Team" button or the grey "Donate Now" button on our Team Moss webpage. Our goal is $20,000 and we are confident we will get there by October 18th through the tremendous support of family and friends who have gone above and beyond to love on our family with prayers and support since Philip was diagnosed with NF in 2011.
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