tag:blogger.com,1999:blog-180428192024-03-07T08:57:39.736-05:00Moss Family
Be joyful in hope,
Patient in affliction,
Faithful in prayer.
Romans 12:12Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.comBlogger452125tag:blogger.com,1999:blog-18042819.post-38773512486140269942017-10-20T09:28:00.000-05:002017-10-20T21:09:06.858-05:00To Write Again<div class="separator" style="clear: both; text-align: center;">
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I've stared at the blank screen to update our family blog so many times over the past year that it is now overwhelming to think about what topic would be best to lead with as we near the end of 2017. Several people from different spheres of influence have asked if I am going to write anymore, if this blog is still active, and in some cases, encouraged me to write more. What has held me back is the fear that my words would somehow seem self-serving, rather than encouraging for someone else. After some reflection I've come back to this blog, staring at the blank screen, with the courage to try again. So some potential topics...<br />
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<ul>
<li>What keeps us motivated to cure neurofibromatosis in our children's lifetime despite the odds?</li>
</ul>
<ul>
<li>Reflections on marriage after 16 years when we are committed to see each other to the grave but not speed each other's arrival to the grave?</li>
</ul>
<ul>
<li>Major career changes? Because it happened and it's been a good thing.</li>
</ul>
<ul>
<li>What life is like for Helen, largely unaffected by her NF diagnosis, but significantly affected by her brother's time and emotion consuming medical circumstances?</li>
</ul>
<ul>
<li>Life after 40, and I mean like, almost three years after turning 40? (because I'm in denial and therefore, late to the party)</li>
</ul>
<ul>
<li>Reflections on parenthood as we are at the precipice of puberty for our oldest?</li>
</ul>
<ul>
<li>Managing a household with two full-time working out of the house parents, one of whom is <i>this close </i>to completing a doctoral dissertation in higher education, with two growing school-aged children, while balancing a relentless pursuit of a cure to our children's currently incurable and untreatable genetic condition while also maintaining commitments to giving back to our community through school, church, or the silent support of friends and family who just need someone to lean in sometimes to help shoulder the burdens of life? (and breathe)</li>
</ul>
<ul>
</ul>
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People often say to me "how do you do it?" or "I am in awe of your faith" or "y'all are amazing." And when they say these things, I think, "I don't have a choice, right? Or do I?" How to unpack that...Is blogging still a thing? Are my thoughts and words of any value to encourage or motivate others? Are there other topics that friends, family, or followers of our NF journey would find meaningful to hear?<br />
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Let me know...<br />
<br />Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com1tag:blogger.com,1999:blog-18042819.post-76578368854847292492017-03-21T12:01:00.000-05:002017-03-21T12:01:22.909-05:00MEK Trial Restaging Visit results from November 2016<div class="separator" style="clear: both; text-align: center;">
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<br />Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com3tag:blogger.com,1999:blog-18042819.post-65537583551964303562016-09-10T16:51:00.000-05:002016-09-10T16:51:14.478-05:00Long Overdue postWe have become so accustomed to social media now that we rarely post on our family blog anymore. The Moss family has been busy living life to the fullest, with both children doing well in second and fifth grade now. Philip enjoys varsity level chess and is finishing his cub scout journey as a webelos II this year, preparing to cross over into boy scouting. Helen is head over heels in love with playing soccer, and enjoys anything high energy, artistic and creative. We adore our children and how different God made each of them.<br />
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Big Philip continues to work on his doctoral dissertation to complete his Ed.D in Higher Education Administration. We've had quite a lot of challenges over the past two years that have contributed to the slow but steady pace he is taking to complete his degree. When he needs a diversion from editing, he enjoys wood working and our garage is noticeably more crowded with the tools to prove it. Renie continues her advocacy, patient engagement, and fundraising work with the Children's Tumor Foundation and we are preparing to host the third annual Alabama NF Walk on October 16, 2016. There are several newly diagnosed or newly introduced NF families that will be there and we look forward to sharing our message of hope with them for a cure in our lifetime.<br />
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Specifically with Little Philip, he continues to be enrolled in the <a href="https://clinicaltrials.gov/ct2/show/NCT01362803?term=azd+6244+plexiform&rank=1" target="_blank">AZD6244 MEK trial through the National Institutes of Health</a>. His success in this trial has been well documented, along with many other pediatric patients enrolled in the trial. This drug has been the answer to many prayers for us. At the one year mark since enrolling, Philip's tumor is now 36% smaller. We rarely hear children ask Philip what is wrong with his neck anymore. The drug does make Philip fatigued and that can be difficult for an eleven year old boy with peers that are active in sports and the outdoors. He is learning to cope but is more susceptible to typical childhood germs and has already had a few days out of school due to a fever virus and a stomach bug. He takes this in stride and continues to amaze us with his resiliency. We work hard to build trust with him to be honest and open with us about any pain or concerns, physical or emotional, and at age eleven, this is can be a tough thing for a little guy. Please continue to keep him in your prayers as he has faced more in his eleven years of life than most of his peers. Again, he amazes us and keeps us motivated to fight for a cure.<br />
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<br />Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com1tag:blogger.com,1999:blog-18042819.post-44998733394131988532016-01-18T14:11:00.001-05:002016-01-18T14:24:29.682-05:00Shrinkage!We have just returned from our first restaging week of evaluation at the National Institutes of Health in Bethesda, MD. To say that our hearts and minds have been preoccupied would be an understatement. All of our prayers and focus these past four months were wrapped up into that one 45 minute MRI to see if the first four monthly cycles of the AZD6244 chemo worked.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_44nA7I3PNE7FnRw9-ZwaD2Qxr8Eg_RqqsdplnLkLbyQ2kDrXplB-cqQN11SFUvGbGNT_CRjDjJN_K2CCpqWzzoA6yJZfHd7p3esLuZxAHQIX3-fGTshnzAxvhgw4bRlloqnM/s1600/achart.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_44nA7I3PNE7FnRw9-ZwaD2Qxr8Eg_RqqsdplnLkLbyQ2kDrXplB-cqQN11SFUvGbGNT_CRjDjJN_K2CCpqWzzoA6yJZfHd7p3esLuZxAHQIX3-fGTshnzAxvhgw4bRlloqnM/s320/achart.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The historical volumetric analysis of Philip's tumor over time. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgat55DybYsXiXYkAtDautiC4oiAiJffMlYzafvY6lfX7nKH7OTkPbABeBTaMP2-Qm_WVI2WC5LSLk5Vsbtf44E7tjYor6n6y6RJ8cfv4AxZuYM-weHuXyIAMJ38yN7F9eLsGmP/s1600/IMG_1583.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgat55DybYsXiXYkAtDautiC4oiAiJffMlYzafvY6lfX7nKH7OTkPbABeBTaMP2-Qm_WVI2WC5LSLk5Vsbtf44E7tjYor6n6y6RJ8cfv4AxZuYM-weHuXyIAMJ38yN7F9eLsGmP/s320/IMG_1583.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Philip under sedation as he heads into his MRI to review his neck and C-spine<br />
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It worked! We were told by Philip's NIH medical team that the tumor showed a 10% overall reduction in volume. We were approved to continue with another four months on the trial and will return at the end of April for the next MRI. <br />
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Our week at the NIH was also filled with evaluations to determine safety and ongoing improvements in Philip's life as a result of the chemo drug. Here are a couple of pictures of our brave son.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFCx5Sipe5YytnzCWwUbm5AWIf2NXqjlTg2b8dMARyMWdSNElBQqy_t_Gb3pA7BQcOUf4M_nix2_YzkWZUg-4qrqIRyl2dsAZl3_7yqumNdlkPEd4AApw8BKGe_ReP9viS8NMz/s1600/IMG_1534.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFCx5Sipe5YytnzCWwUbm5AWIf2NXqjlTg2b8dMARyMWdSNElBQqy_t_Gb3pA7BQcOUf4M_nix2_YzkWZUg-4qrqIRyl2dsAZl3_7yqumNdlkPEd4AApw8BKGe_ReP9viS8NMz/s320/IMG_1534.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eye exam</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8Wu1xcps_vQRAcD5KxI-tHPYUm2VyFD0uJE59eecfunj_LJ4xHLA0X0-weFAGFB7UmPH569tp-Dr6T0fyT4h4CvbsCsiX0iLCNFH1jV5_beV3BMMkg56x6KWLulVgT7DWKf8Z/s1600/IMG_1536.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8Wu1xcps_vQRAcD5KxI-tHPYUm2VyFD0uJE59eecfunj_LJ4xHLA0X0-weFAGFB7UmPH569tp-Dr6T0fyT4h4CvbsCsiX0iLCNFH1jV5_beV3BMMkg56x6KWLulVgT7DWKf8Z/s320/IMG_1536.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Echo cardiogram</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSCJs42R1KzmD7dVsJ9wb92FliSgq1PyLxcPjH48wPdsnLLljw94XhTLh8si9Jr7zcS9XRQKdmx6RRqqP_0JOFeqPYLbx4nRjHDOlce9eQV5wH8erSBapPFpxo0PgUbExuYfE-/s1600/IMG_1544.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSCJs42R1KzmD7dVsJ9wb92FliSgq1PyLxcPjH48wPdsnLLljw94XhTLh8si9Jr7zcS9XRQKdmx6RRqqP_0JOFeqPYLbx4nRjHDOlce9eQV5wH8erSBapPFpxo0PgUbExuYfE-/s320/IMG_1544.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Retinal lining evaluation</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_YZeOTwgRFasqsVAiumPPipsfbmDAKgFKtPMAO4HTl_vMEMCp1qipd0XWU58f4Q8s4fVbQCfNNGpGFZTxKjeiSVLY8uQmVZRsjpnTEK9QgzWmx51mkonfyyaoR0aYiMmxs73O/s1600/IMG_1545.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_YZeOTwgRFasqsVAiumPPipsfbmDAKgFKtPMAO4HTl_vMEMCp1qipd0XWU58f4Q8s4fVbQCfNNGpGFZTxKjeiSVLY8uQmVZRsjpnTEK9QgzWmx51mkonfyyaoR0aYiMmxs73O/s320/IMG_1545.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The incredible and already encouraging Andrea Baldwin, our NP. Smiles, even after being prescribed antibiotics for a nail infection that is a side effect of the chemo. I told you she is amazing.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvtioW_sWS50W8p-87SOtn7XSXPuJf7S19iRkk63NOmB1m3gUyGjLFNyLIXNPJhyphenhyphenVui8DT0QFZhpVVd5OikrHMC4x1nmQKTzMiKtFNLjg_V2FHSWtz982jZyPMG2WO4CJVY0Xq/s1600/IMG_1551.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvtioW_sWS50W8p-87SOtn7XSXPuJf7S19iRkk63NOmB1m3gUyGjLFNyLIXNPJhyphenhyphenVui8DT0QFZhpVVd5OikrHMC4x1nmQKTzMiKtFNLjg_V2FHSWtz982jZyPMG2WO4CJVY0Xq/s320/IMG_1551.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zilly, the therapy dog, at the Children's Inn at the NIH where we stay during our visits.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0GXydYRLkmaUDuFv-lwTyVGoBsKz29gLkCM5Y0E9xg2JmJEQyEfVQoFcaKF5ektO-NCrqBNgxQRpOloPS2SpWmqfCb-GNgHKHFG3Idsc_S5_i_ZCL3zv3LUOMKL8hjT2SxDpj/s1600/IMG_1553.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0GXydYRLkmaUDuFv-lwTyVGoBsKz29gLkCM5Y0E9xg2JmJEQyEfVQoFcaKF5ektO-NCrqBNgxQRpOloPS2SpWmqfCb-GNgHKHFG3Idsc_S5_i_ZCL3zv3LUOMKL8hjT2SxDpj/s320/IMG_1553.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ms. Pam, Philip's neuropsychologist</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxIGWmY5wRY8uo_uJmyznbWaVcurC-ZSDn_ohi7vom4rr7Z54K4PHphfDsx0RU7I_yDUCG4xfkTyvogat9UxFep0zRSBQWSvWkei17XDhABzsvgoIiTzbL5zVIb0B1ZV5MUOH9/s1600/IMG_1566.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxIGWmY5wRY8uo_uJmyznbWaVcurC-ZSDn_ohi7vom4rr7Z54K4PHphfDsx0RU7I_yDUCG4xfkTyvogat9UxFep0zRSBQWSvWkei17XDhABzsvgoIiTzbL5zVIb0B1ZV5MUOH9/s320/IMG_1566.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photography</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Pre-anesthesia screening. Philip is very good about this (and flexible)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">After waking up from his MRI, Philip always orders a double order of fried chicken wings with a side of sass</td></tr>
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Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com1tag:blogger.com,1999:blog-18042819.post-24986931777681272972015-12-15T13:29:00.001-05:002015-12-27T19:51:49.422-05:00End of the Year UpdateIt has been sometime since we updated everyone on our family's activities, especially related to Little Philip's progress since enrolling in the <a href="http://www.ctf.org/item/promising-results-in-tumor-shrinkage-study-announced-at-neurofibromatosis-conference.html" target="_blank">MEK trial through the NIH</a>. For those of you who follow us on facebook, you know it has been a challenging semester for our son, transitioning to fourth grade while dealing with a pesky strep infection that would not go away. This infection exacerbated the side effects of taking his new oral chemo causing him to miss a significant amount of school.<br />
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Philip's health has improved, although he continues to suffer from significant fatigue and chronic headaches that make it difficult to keep up with his peers at church and school. He will often nap in the morning while at school, skipping physical education. We work to communicate with his school what we think may be helpful, but we are trying to tinker with different changes in his daily and nightly routine, hoping to minimize the fatigue and discomfort. <br />
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We have no choice to but make this work. We cannot think of what would happen if we allow his tumor to continue to grow. We do know from other patients enrolled in this trial that their tumors have shown significant response to the drug. In one case, there is a boy who started the trial about a month ahead of Philip and his tumor showed 13% reduction this month. Philip will return mid-January for his first MRI and a significant number of medical evaluations. We hope and pray that we have good news to report back.<br />
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We are focusing on Christmas and being with family, resting. With two full-time working parents, managing a complex medication situation while providing much needed love and attention to our daughter has been very challenging but we have managed as best we can. We are thankful for the many ways our friends and family have provided support to us. Selfishly, I do not know how this mama would have survived without the many Starbucks gift cards provided to us to make it through the long days at the NIH and often, just needing a pick me up on the way to work after a long night of issues or making up for house work, home work, or general life responsibilities that get backlogged.<br />
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We are so incredibly blessed to have Vestavia Pediatrics as our general pediatrician, helping us to manage the November strep infection and ongoing monthly blood draws that are required for Philip's enrollment on the MEK trial. Those blood draws are no fun, but Nurse Sarah and Nurse Brenda do everything they can to make it light hearted. We would be remiss without acknowledging the incredible heart of Dr. Simpson, who regularly prays with us in clinic. It means the world to us to know he shares our faith and hope that bolsters our spirits for our son. Meanwhile, Dr. Bruce Korf is our "coach" overseeing all aspects of Philip's neurofibromatosis case, always on the cutting edge of the latest research initiatives and willing to spend the time needed for us to learn and educate ourselves about what may be on the horizon to help our son.<br />
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<b>Here, at year's end, we believe our 2015 total funds raised for Children's Tumor Foundation exceeds $32,000.</b> We are also aware of several benevolent gifts made on our behalf to the UAB Neurofibromatosis Clinic where we receive our genetic care through Dr. Bruce Korf. We cannot thank our supporters enough for providing funding towards research efforts that we know will lead to effective treatments in our children's lifetime. And finally, several friends and families provided personal funds that we have set aside to assist us with requires flights to and from the NIH in Bethesda, allowing both Big Philip and I the ability to be together with our son for these important trips throughout the time he will be enrolled in this chemotherapy trial. After taking Little Philip by myself in November, I will never do it again. It was an emotionally difficult trip to be there alone with our son, especially since Little Philip became very ill from the effects of the chemo, combined with an allergic reaction to cephalexin. I need my husband by my side, and he needs me too. So thank you, friends and family, for providing us with the ability to make that happen.<br />
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We have much to be thankful for here at year's end but we will not publicly share all the ways we rejoice as we pray for the ability to scream from the mountaintops after January's NIH trip when we hope to share good news. Please pray for the medical team responsible for Philip's care, including everyone at Vestavia Pediatrics, Dr. Bruce Korf at UAB, Dr. Brigette Widemann at the NIH, Trish Whitcomb, NIH clinical care managing nurse, Andrew Baldwin and Marielle Holmblatt, his NIH clinical nurse practioners, Doctor John, the NIH post-doc fellow that helps with Philip's exams, Kara Heisey, NIH patient care coordinator, Mrs. Pam, his NIH neuropsychologist, and the staff at the Children's Inn that always welcomes us with a smile and encouragement when we stay at the NIH.<br />
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<br />Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com0tag:blogger.com,1999:blog-18042819.post-44256489907174285822015-10-09T16:25:00.001-05:002015-10-09T16:25:28.963-05:002015 Alabama NF Walk - Donate or Register Today!<span style="font-size: large;">9 days until the 2015 Alabama NF Superhero Walk. Neurofibromatosis has caused a lot of changes in our family in the last year. In November of 2014, we were humbled to receive the 2014 CTF Strength and Honor Award at a beautiful Benefit in Detroit that raised over $3 million for clinical research through the Children's Tumor Foundation. This November we will be taking our son back to the NIH for a follow up exam to his recent enrollment in a chemo drug trial we hope and pray will shrink the inoperable tumor in his neck. </span><br />
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<span style="font-size: large;">After receiving that award last year, we were back in our hotel room late that night. Little Philip was holding the award and said "The sphere symbolizes NF and the figures below are treating current patients by holding the sphere and open-handed as they search for a cure." He looked up at us with the biggest smile. I kid you not. </span><br />
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<span style="font-size: large;">If you've not donated or registered to walk with us yet, please make the commitment with us to push that NF sphere off the cliff in Philip's lifetime. Register or donate today at <a href="http://www.nfwalk.org/alabama">www.nfwalk.org/alabama</a></span><br />
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<br />Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com0tag:blogger.com,1999:blog-18042819.post-60526472393964773422015-10-07T23:24:00.001-05:002015-10-07T23:24:29.764-05:00AZD6244 Clinical Trial - We are In!<div class="separator" style="clear: both; text-align: center;">
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We have been so incredibly busy over the last month that we have failed to share our exciting news. At the end of August, we received the call that Philip had been selected to enroll in the AZD6244 clinical trial for inoperable plexiform tumors. We were overjoyed to have this answer to our prayers! </div>
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In mid-September we took Philip to Bethesda, MD for an intense week of medical evaluation and testing to qualify to begin taking this promising new oral chemotherapy drug. He began taking it on September 24th. He will return to the NIH in Bethesda in January for an MRI to see if the drug is working. Please pray that it is working this very minute to shrink the tumor away from Philip's airway and vital blood vessels. </div>
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The trip was intense but also a lot of fun! We stayed at the Children's Inn at the NIH which is an incredibly wonderful Inn where children and their families stay at no cost. There were activities and field trips throughout out time there. Philip especially enjoyed the game room and he met several other children staying there with their families. We also attended a Washington Nationals game where Philip went onto the field and into the dugout before the game. He even got Steve Strasbourg's autograph! </div>
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This is not been the most eloquent or well thought out blog post but in an effort to remain honest and real with our family and friends, I will simply say that we are emotionally and physically exhausted as a family. This has been an emotionally draining month for us but we are not without hope and encouragement from friends and family that continue to lift us up in prayer and support. We look forward to gathering together as an Alabama NF community in a little over a week at the <a href="http://ctf.kintera.org/faf/home/default.asp?ievent=1136112" target="_blank">Alabama NF Walk</a> where we will see new and familiar faces of NF and remember that our leadership and advocacy efforts are vital not only to our son but countless other children and adults living with NF.</div>
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<br />Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com0tag:blogger.com,1999:blog-18042819.post-89043437654626472872015-09-09T18:11:00.001-05:002015-09-09T18:19:44.562-05:002014 Children's Tumor Foundation Annual ReportI am pleased to share with you the <a href="http://issuu.com/childrenstumor/docs/ctf_annual_2014_final_web?e=0/15326360" target="_blank">2014 Children's Tumor Foundation​ Annual Report</a>. Within these pages are messages of hope through reported advances in research made possible through your ongoing support. Within these pages, I see the names and faces of family and friends who have supported us through the full range of emotions we have as parents to a child significantly affected by neurofibromatosis.<br />
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We are less than $1000 from meeting our 2015 Team Moss goal of raising $20,000 for Children's Tumor Foundation. Whether you can join us on October 18, 2015 at the Alabama NF Walk or not, we encourage you to partner with us by<a href="http://ctf.kintera.org/faf/search/searchTeamPart.asp?ievent=1136112&lis=1&kntae1136112=3C0FED2FDAB0436BA08C78015C0F5A33&team=6313801" target="_blank"> registering or donating today</a> to help us meet our goal. <br />
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Next week we leave for Bethesda, MD, for Little Philip's grueling medical evaluation prior to beginning the AZD6244 drug trial. We are thankful that this trial is made possible by the combination of our family and friends, the committed talent, expertise, and passion of our medical team led by Dr. Bruce R. Korf​, the outstanding Children's Tumor Foundation staff that has become like family to us, and the countless scientists working at this very minute, literally in places all around the world, fueling our hope that a cure will be found in our children's lifetime. Thank you, friends and family, for loving us so well. Your benefit not only the Moss family but over 2 million people living with NF worldwide. A few images from the full 2014 Children's Tumor Foundation Annual Report are below that show some familiar faces that appear within the report. The full report is listed below as well.<br />
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<script async="true" src="//e.issuu.com/embed.js" type="text/javascript"></script>Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com0tag:blogger.com,1999:blog-18042819.post-65491590991667212732015-07-22T14:19:00.005-05:002015-07-22T19:53:44.029-05:00Conversation in a Canoe<div class="separator" style="clear: both; text-align: center;">
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I intended to share this story months ago but in retrospect, I am thankful for God's timing that delayed me from sharing it then. I sat down several times over the last few months, intending to share this story, but various life circumstances prevented me from doing so, mixed with a little self-discipline on my part to resist the temptation of over sharing. The story now means more to me, and I hope to someone else that may be reading this now.<br />
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Let's go back to Mothers Day weekend, when we traveled to Mississippi to be with family at a beautiful little patch of nature, complete with all manner of wildlife, including close encounters with snakes and fish that seemed to jump onto the hooks of rookie fishermen (including me). I admit that I was less than enthusiastic about the trip. We had been going at a feverish pace in our family, due to extra demands at work, after school activities, maintaining volunteer commitments at schools, our church, and in the community. To top it off, that was the week that we stopped chemotherapy for Philip, having learned that his tumor was not responding to treatment. Mothers Day was the farthest thing from my mind. I was a wreck, and felt spent but had a to-do list a mile long that was not going away. <br />
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As we drove to Mississippi that Friday night, my patient husband reached over and grabbed my hand and thanked me for making the trip, acknowledging that it was one more activity in an endless sea of chaos that month. I listened to our two children in the backseat chattering with one another. I closed my eyes, longing for the ability to be more like these children, carefree, innocent, oblivious of responsibility and a smart phone color-coded schedule. As soon as we arrived, I was relieved to be there and felt my spirit refreshed by the joy surrounding me in the form of catching up with family members we had not seen in a while, the sound of children running and laughing together, as well as an abundance of good food and fellowship in store for the next two days. <br />
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The next day, we heard an update about a close family friend that is battling advanced cancer. He had been reading a devotion for those facing cancer that encouraged him to spend intentional time with significant people in his life. Later that afternoon, Big Philip and I stole away in the canoe together and paddled around the lake. <br />
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"<i>You know Renie, that is what I am trying to do with Philip</i>," my husband said. The canoe stopped moving as I realized this was going to be a serious conversation. Paddles down. He continued.<br />
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"<i>We don't know what the future holds for our son, so if that means we aren't able to devote as much time for CTF fundraising this year in favor of spending more time with my son, that is what I'm going to do. That is why being a Cub scout den leader means so much to me. I want to spend intentional time with him. I want to be significant in his life as his father." </i><br />
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My husband is right. There is no rebuttal. We are fighting, doing everything we can to ensure that a cure for NF is found before NF acutely affects our son's life. If NF has its way with my son, I need him to know I did everything possible, that I held nothing back, making a pest of myself in every way possible to garner one more sponsor for the NF Walk, gather one more family like us, that needs to know they are supported and not alone in this fight. I close my eyes and picture the faces of the many NF parents and children, young and old, that I have met over the past three years. Some are no longer with us.<br />
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However, the memories we want our son to have of his childhood are no different than the dreams of other parents. We want Helen to be as unaffected by NF as possible too. Intentional time spent with significant people. Making great childhood friends and growing up together, family vacations and trips, camping, swimming, learning to ride a bike, taking healthy risks, laughing so hard that you can't catch your breath. We want these memories to outnumber the countless MRIs, chemo pills, doctor's appointments, blood draws and more. <br />
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This is why I have hesitated to write this story because I do not know how to end it. There is no happy ending, not yet, but many happy chapters that continue to unfold. We fight for the ultimate happy ending in the midst of battling for more moments of joy and laughter. There are plenty of these moments, more moments spending intentional time with significant people. It should not take a life altering circumstance like ours to pause and think of ways everyone should be spending more time with significant people in intentional ways.<br />
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We have spent this summer working on being more intentional in reflecting on each of our prayer warriors and supporters that never seem to tire of sharing an encouraging word, a helpful hand, a willing spirit to continue to the fight to cure NF alongside us. Many of these same friends and family fight by providing a normal childhood experience for our son, helping to push the shadow of NF away, allowing him to just be a child, full of wonder and excitement, without fear or anxiety for a little while longer. <br />
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<i>Thank you to my husband, Big Philip, who is willing to fight my fighting spirit in moments like we had in that canoe that day. As we celebrate our 14th anniversary this week, I am amazed at your patience with me and courage to hold me through the stormy emotions that I sometimes cannot escape. You are my rock and quiet source of wisdom just when I need to hear it the most...like in a canoe in the middle of a lake from which that I cannot escape. God is funny like that sometimes.</i><br />
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And so, our story continues but not without a deeper understanding of what is significant in life to be intentional about and the countless friends and family that are very significant to our family.<br />
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<br />Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com4tag:blogger.com,1999:blog-18042819.post-394655317080390572015-05-18T16:44:00.000-05:002015-05-18T16:51:45.701-05:00Wait Listed<blockquote 12.8000001907349px="" arial="" font-size:="" sans-serif="" type="cite">
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We wanted to update you on Little Philip's health and I will try to be as brief as possible. Before I do, I want to start by thanking each and every one of you for your continued support through your prayers and encouragement. </div>
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<i>A reminder that there is no cure to neurofibromatosis and no proven treatment for plexiform NF tumors like Philip's. Everything we do is to manage the situation as best we can until a cure can be found. Here is a quick recap of Philip's most recent NF journey.</i></div>
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In early 2014, Philip's medical team felt that the tumor in his neck was growing too fast. Despite having surgically removed it 2011, it had grown back, starting to surround his airway, displacing his carotid arteries, and involving major nerves in the face, digestive system, and upper body movement. His physicians continue to be concerned that if they can't stop the tumor's growth, high risk and life threatening concerns could occur. To date, he has experienced no pain and no concerns. Our goal is to keep it that way.</div>
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Since surgery is no longer an option, Philip began taking oral chemotherapy in August 2014 and stopped taking it at the end of April 2015 when an MRI showed that the tumor had grown an estimated 18% in 9 months. There is no other treatment that his medical team recommends other than a promising clinical trial through the National Institutes of Health/NCI. The drug is called <a href="https://www.clinicaltrials.gov/ct2/show/NCT01362803" style="color: #1155cc;" target="_blank">AZD6244 (Selumetinib)</a> and there are 50 pediatric slots. </div>
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Philip is currently on the waitlist and as of this past week, his position is a "high teen" number due to his case being considered high risk. We should know by August at the earliest, or November at the latest if he is selected to participate in this two year clinical trial. If he is selected, then we will travel to Washington, DC several times a year to complete testing and MRI imaging while on trial. </div>
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Other than having neurofibromatosis type 1, Philip is almost 10 years old, came in third place in his school-wide spelling bee, advanced to Webelos cub scouts, reads roughly 500 pages in books each week, and he is going to be a junior counselor in a chess day camp this summer before heading off to his third year of sleep away camp. He's super smart, super silly, and has the biggest heart for family and friends. When children ask him "what's wrong with your neck?" he says it doesn't hurt his feelings and that he is happy to tell them about NF because it's the only way we will find a cure if more people know about it. </div>
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I should mention that Helen does not show any concerns with her NF1. Big Philip also does not show any concerns, although he suspects he may have always had ADD from NF1, but he is not using (or allowed to use) that as an excuse in finally finishing his doctoral dissertation in higher education administration. </div>
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We will raise $20,000 in 2015 for clinical research through the Children's Tumor Foundation and, along with several other Birmingham area NF families we will host the 2nd annual Alabama NF Walk on <span class="aBn" data-term="goog_240441373" style="border-bottom-color: rgb(204, 204, 204); border-bottom-style: dashed; border-bottom-width: 1px; position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">Sunday, October 18, 2015</span></span>. We know that over 70% of all current NF research has been informed by data from Children's Tumor Foundation, including the trial for which we are wait listed. We also know that over 80% of each dollar raised goes straight to clinical research and patient education and only 6% is spent on management and administrative cost. (<a href="http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=5905" style="color: #1155cc;" target="_blank">Link to CTF financial reports</a>). We are also thankful for family and friends that participated in the rather scandalous but fun Cupid's Undie Run as "Team Moss" in several cities across the country in February, raising the first $2900 towards our $20,000 goal. </div>
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<b>If you would like to join us or support us as a virtual walker or donor this year, <a href="http://ctf.kintera.org/faf/search/searchTeamPart.asp?ievent=1136112&lis=1&kntae1136112=CFDC3A2F4CF04907AACB95A7DDD5FEC2&team=6313801" style="color: #1155cc;" target="_blank">please register here.</a> Knowing the walk is only one way to raise awareness, we are eager to speak with any one interested in learning more about our commitment to support the Children's Tumor Foundation and would welcome the opportunity to share ways others can join with us as well. </b> </div>
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<tr><td class="tr-caption" style="text-align: center;">2015 Mother's Day at the Hunt Camp, #ikNowaFighter</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Third Grade Bible Presentation at church</td></tr>
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Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com0tag:blogger.com,1999:blog-18042819.post-55680850688124066092015-05-06T21:29:00.000-05:002015-05-13T21:33:16.740-05:00Chemotherapy Stopped<div style="background-color: white; color: #141823; font-family: helvetica, arial, 'lucida grande', sans-serif; font-size: 14px; line-height: 17.5636348724365px; margin-bottom: 6px;">
Today's oncology appointment was important because we knew the disappointing news we were going to receive. Philip's situation is not without hope but the hope is now in getting selected for a clinical trial.</div>
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The latest NCI volumetric analysis of Philip's tumor showed approximately 12% growth over 4 months. So, over the course of his 9 months of Gleevec oral chemotherapy treatment the tumor grew about 18%. Gleevec did not work. It was a long shot at about 30% efficacy r<span class="text_exposed_show" style="display: inline;">ate for other patients but it was our only option.</span></div>
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Dr. Reddy, Philip's oncologist, is sending medical records to the National Cancer Institute (NCI) in the hopes he may be selected to participate in a clinical drug trial for Selumetinib Sulfate, or AZD 6244 which is much easier to pronounce. Dr. Korf's office at UAB is also sending all of their records. We know several families that are current participants in this study and they have shared that their children's tumors have often not only stopped growing, but are SHRINKING while on treatment. At least three of these children have neck tumors very similar to Philip.</div>
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We have emailed the principal investigator (recipient of the 2013 Children's Tumor Foundation's Friedrich von Recklinghausen Award) as well as the study administrator. We hope to hear back very soon about how viable this trial is for our son since his physicians consider his prognosis very strong for inclusion. He meets all trial criteria. So now, we wait.</div>
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It was very disappointing to leave Dr. Reddy's office today with no return appointment scheduled. But, we are very thankful for everyone that came into our exam room to offer encouragement. That includes Jeff Barrett, Children's Social Worker who always provides us with ways to keep our spirits up; Sasha Ramini, Dr. Reddy's awesome nurse practitioner who knows all my coolest girlfriends; as well as Dr. Reddy herself, who we cannot not say enough good things about. Her commitment to research, collaborative approach with colleagues, strong understanding of clinical trials, and encouraging personality continues to be a blessing to our family.</div>
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So, we are not completely without hope, but remind ourselves and everyone that has been praying for Philip that despite the tumor's continued growth, he continues to experience no pain, no discomfort, and is closely monitored by the best of the best in medicine right here in Birmingham, AL. We are so proud of Philip's strength throughout his medical challenges, and his ability to always stay goofy and see the humor in life. Thank you for your persistence in prayer for our son.</div>
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Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com0tag:blogger.com,1999:blog-18042819.post-28180264028581675882015-03-17T12:21:00.000-05:002015-04-13T08:53:02.136-05:00Chemotherapy UpdateWe haven't officially shared how Philip's Gleevec (oral chemotherapy) therapy has been going since he began taking it in August of 2014. Thankfully, all of the main side effects we were concerned about have not happened. He has had no abdominal discomfort, no headaches, and while he seems to be a little more lethargic than usual, it has not affected his quality of life or academic performance. He continues to be the goofiest, silliest nine year old boy you have ever met and brings us joy each and everyday through his big hugs and warm smile. <br />
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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. </div>
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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. </div>
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<tr><td class="tr-caption" style="text-align: center;">From <a href="http://www.nfmidwest.org/volumetric-measurement-of-tumors-in-neurofibromatosis/">http://www.nfmidwest.org/volumetric-measurement-of-tumors-in-neurofibromatosis/</a></td></tr>
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The volumetric analysis showed that the Philip's tumor still grew between June 2014 and the November 2014 MRI, but it was <i>the slowest recorded growth</i> 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! <br />
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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. </div>
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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. </div>
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<b><span style="font-size: large;">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 <a href="http://ctf.kintera.org/faf/search/searchTeamPart.asp?ievent=1136112&lis=1&kntae1136112=B9D0B5066F2F43CFB81E9B03A83DEA08&supId=0&team=6313801&cj=" target="_blank">our Team Moss webpage.</a> 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. </span></b> </div>
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Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com0tag:blogger.com,1999:blog-18042819.post-39780786705198273392014-12-01T15:01:00.001-06:002014-12-01T15:01:46.052-06:002014 Strength and Honor Award from Children's Tumor FoundationWe wish we could refuse to accept the 2014 CTF Strength and Honor Award. The journey that led to this moment is not one we would willingly walk. As newlyweds, our expectations did not include having to accept a genetic diagnosis that carried lifelong consequences. As parents, nothing prepared us for how to cope with the diagnosis of NF1 for not one, but both of our children.<br />
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Our family's blessings and privileges are far beyond what we deserve. We enjoy the love and support of countless friends and family. We live in the shadow of one of the world's best medical research hospitals in the world. But at the end of each day as we tuck our children into bed, the reality sets in once again. There is no cure, no treatment, nothing that will take the word neurofibromatosis out of our vocabulary.<br />
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Those are dark moments that NF families know all too well. In those moments, we have choice to continue to live in the darkness of fear or choose to be a part of something far greater than ourselves and fight for the light of hope. This is what we have chosen since our son’s NF diagnosis of 2011. The journey has not been easy, and at times our faith has faltered, but being in the presence of over 1,200 people gathered at the CTF BeNeFit II in Detroit this past weekend gave us renewed hope. Somewhere in that room Saturday night, we pray the tipping point was present among the approximately $3 million dollars raised for Children's Tumor Foundation.<br />
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As we adjourned for the evening, CTF President and Chief Scientific Officer Dr. Annette Bakker came up to me and with fierce determination in her eyes said "we are going to beat this. I promise." I believe her.<br />
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There are dedicated physicians, scientists, and benefactors that believe a cure will be found in our lifetime. I know because I have met them and I seek them out. I want them to know the longing of my heart as a mother and wife. I want to offer them my deepest gratitude for their tireless efforts on behalf of my entire NF family, numbering more than 2 million worldwide. I believe in them.<br />
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We are grateful for the incredible hospitality we received from the Gilbert Family, for Dr. Bruce Korf and his nomination of our family for this award, and everyone with the Children’s Tumor Foundation for allowing us such a memorable experience at the CTF BeNeFit II. We were touched by the countless attendees that came up to us throughout the night to share how moved they were by our family's story. We hope that in our transparency, we can continue to show others that faith, hope and joy can exist in spite of the challenges of living with NF.<br />
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<br />Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com0tag:blogger.com,1999:blog-18042819.post-23538258392188350702014-11-11T14:24:00.000-06:002014-11-24T15:46:22.797-06:00Upcoming Benefit in DetroitWe are are humbled and honored to receive the Children's Tumor Foundation's 2014 Strength and Honor Award at the <a href="https://givingcenter.bidpal.net/Portal/bpe182189/main/home.html">BeNeFit II in Detroit</a> next Saturday, November 22nd. Little Philip and Helen have their super hero outfits ready to go and their parents and grandparents have some super hero accessories to reveal on the big night as well!<br />
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As so many of you know, our journey with Neurofibromatosis (NF) continues to be one of anxiety and emotional exhaustion as we struggle to anticipate and manage the unknown future for our son, while maintaining a willingness to thrive as a family in the face of NF. We have a rather bird's eye view of the promising clinical research in progress due to our incredible medical team headed up by Dr. <a href="http://www.ctf.org/Board-of-Directors/Bruce-R.-Korf-M.D.-Ph-D.html"><span style="color: #3b5998;"><span style="cursor: pointer;">Bruce R. Korf</span></span>.</a> Dr. Korf is a wealth of knowledge and provides us with a regular dose of hope and encouragement that a cure really is possible in our children's lifetime. We are thankful to Dr. Korf for his nomination of our family for this special award.<br />
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But that cure is only possible with the support of research provided through the <a href="http://www.ctf.org/">Children's Tumor Foundation</a>. As you approach the end of the 2014 year, if you have the desire to have a lasting impact on the future of our children's health and the health of over 3 million people worldwide living with NF, please consider making a donation today. We would love to know how to acknowledge your support by your designating your gift in honor of our family but there is the option to remain anonymous as well. Simply click on the <a href="https://givingcenter.bidpal.net/Portal/bpe182189/main/home.html">BeNeFit II </a>image below to make your donation.
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This BeNeFit II will be a joyful event for our family because of the hope and encouragement of everyone in our lives that loves us so well through your prayers and encouragement. We are also thankful to the Jennifer and Dan Gilbert for their generosity in hosting this important event again this year. <a href="http://www.insidephilanthropy.com/home/2014/7/9/why-this-billionaire-youve-never-heard-of-is-tackling-a-diso.html">If you don't know Jennifer and Dan Gilbert, you should.</a> We have had the pleasure of learning more about this amazing family over the last few months and their ability to intertwine their business success with their passion for supporting philanthropic endeavors close to their hearts. We very much look forward to meeting the Gilberts and thanking them for this opportunity and their tremendous support for NF research.
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We look forward to sharing our experience with you in some very special ways following the event so stay tuned! As always, thank you for being a part of Team Moss as we work towards a cure for NF in our children's lifetime.<br />
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Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com0tag:blogger.com,1999:blog-18042819.post-78044517683612976542014-10-06T16:45:00.003-05:002014-10-06T16:45:40.930-05:00Samford Football NF Awareness Event<div class="separator" style="clear: both; text-align: left;">
Here in the South, football is a way of life each fall. I have had the privilege of working at <a href="http://www.samford.edu/">Samford University</a> for over four years now, helping to support a vibrant campus life experience for all of our incredible students. This year, our family was given the opportunity to promote NF awareness at a September home football game. Joining us at half-time was another local NF family and their son, as well as some faithful Team Moss supporters from Samford and Vestavia West Elementary. Thanks to our friends in Samford Athletics, we were able to raise awareness while releasing blue balloons for NF. Little Philip and Helen were able to join the "voice" of Samford Bulldogs, Mike Grace, on the Samford sports network for a quick radio interview at the start of the second quarter. Little Philip had practiced a few lines to raise NF awareness and he more than delivered when given the opportunity to grab that microphone. </div>
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It was such a great day to smile, to be a supporter of Samford football, and to accept emotional support from family and friends. At the end of the day, we again reflected on the blessings of family and friends that surround us- our neighborhood, our places of work, our church, our schools, and our present community as well as friends from our previous communities where we have lived over the course of our lives. We can never say thank you enough for the gift of encouragement you all provide to our family!</div>
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<br />Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com0tag:blogger.com,1999:blog-18042819.post-53093746345783287742014-09-04T17:25:00.004-05:002014-09-05T08:53:29.817-05:00Gleevec TherapyLittle Philip began taking 100 mg of Gleevec on Friday, August 22nd. After educating ourselves about what the potential side effects could be, we have been pleasantly surprised that he has not experienced anything adverse. We returned to Dr. Reddy on Wednesday, September 3rd to run lab work to check kidney, liver, and thyroid functions and again, there were no concerns. His dosage now doubles to 200mg day and we will continue to watch for some of the more common side effects until the end of this four month chemo regimen. The MRI in December will show whether or not this drug therapy is stabilizing or shrinking his neck tumor.<br />
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Since we had extra time before our scheduled appointment this week, we walked across the street to the UAB Callahan Eye Foundation Hospital to see the artwork by <a href="http://www.jeffreyowenhanson.com/">Jeffrey Hanson</a>, a fellow NF hero who is visually impaired due to an optic nerve tumor caused by NF. Jeff also designed the artwork for the CTF Racing4Research sponsored Compass 360 racing team. We were able to see his car up close and personal this past spring at the Barber Motorsports Park. I'm looking forward to reading the book <i><a href="http://www.jeffreyowenhanson.com/books/">Lessons from CLOD: An Inspiring Story of Art, Philanthropy, and Entrepreneurship</a>, </i>written by Jeff's father, Hal Hanson who is also a doctor. As Philip and I walked back towards Children's Hospital this was the conversation:<br />
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<i>Mom, does Jeff Hanson have to have MRIs like me?</i><br />
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<i>Does Jeff have to have blood drawn like I do?</i><br />
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<i>Does Jeff have to take pills like I do?</i><br />
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These are questions that pain my heart. These are questions no parenting book prepares you to answer. <br />
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I was so thankful that seeing Jeff's artwork opened up an honest dialogue with my son that is rare these days. Perhaps it is because he is a nine year old boy and becoming "too old" to talk with his mother as freely as he used to. Perhaps it is because he doesn't know how to handle all the confusing emotions and questions swirling inside his heart and mind. Yesterday, for a brief moment, he looked me in the eye and asked these questions and I answered. My prayer is that he will continue to reach out to me and his father when he is scared, when he has questions, and that we can be a place of safety and reassurance for him as he fights this battle. <br />
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Otherwise is it a very busy season for our family due to work, studies (dissertation in progress for Big Philip) and general family activities. Helen is enjoying kindergarten again this year and continues to take gymnastics and Little Philip has chosen to pick up chess as an after school activity. Helen is crazy excited about gymnastics and Little Philip is crazy good at chess. They are a source of incredible joy to our hearts.<br />
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<br />Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com1tag:blogger.com,1999:blog-18042819.post-82407421441790388352014-07-29T13:21:00.004-05:002014-07-29T20:08:49.990-05:00Drug Therapy Decision and Exciting News<div style="text-align: left;">
A rare blog post by Big Philip, whose usual writing these days involves his dissertation towards completion of an EdD in Higher Education through the University of Alabama. </div>
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<i>Son, in 35 years of religious study, I have only come up with two hard inconvertible facts: there is a God, and I’m not him. </i></div>
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Father Cavanaugh, in the film Rudy<br />
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<span style="font-family: 'Times New Roman', serif; font-size: 16px; line-height: 32px;"><span style="mso-fareast-font-family: Calibri; mso-fareast-theme-font: minor-latin;">The quote by “Father Cavanaugh” in Rudy
seems to sum up our situation with Philip.<span style="mso-spacerun: yes;">
</span>Making decisions about your child’s health should be easy.<span style="mso-spacerun: yes;"> </span>Take this pill and they will get better.<span style="mso-spacerun: yes;"> </span>Sure, no problem.<span style="mso-spacerun: yes;"> </span>Give them this shot and they will be
healed.<span style="mso-spacerun: yes;"> </span>Ok, let me have it.
Unfortunately, that is not our situation. </span><o:p></o:p></span></div>
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<span style="mso-fareast-font-family: Calibri; mso-fareast-theme-font: minor-latin;">Neurofibromatosis tumors are unlike cancer or
other really bad health situations that you have heard about. NF
tumors may or may not respond to chemo treatment. </span><br />
</span><span style="font-family: 'Times New Roman', serif; font-size: 16px; line-height: 32px;">Chemo drugs are often used because of the chemicals within the tumor that they target or inhibit. Tumors may or may not respond to current treatment options. And, there are always the potential new drugs, still in the clinical trial phases, that have not been approved by the FDA for children to take. So our next step is to return to Dr. Reddy, our oncologist, and begin the process of getting Gleevec prescribed. We were hopeful to begin Gleevec before Philip started the third grade in order for him to adjust to the side effects but that is no longer a possibility with school starting in two weeks. We were cautious and thorough over the last few months before making the decision to begin drug therapy and that was the right thing to do. There are emotional decisions and rational decisions. Somewhere between the two is where we needed to land. From what we understand about Gleevec, the potential side effects are minimal, mainly abdominal discomfort and fatigue.
We expect that we will begin Gleevec sometime in late August or early September. Please pray that the side effects are minimal so that Philip can enjoy as normal a third grade year as possible.</span><span style="font-family: 'Times New Roman', serif; font-size: 16px; line-height: 32px;"> </span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 32px;"><u></u> Now for some good news! <u></u></span><span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 32px;">We have hinted that we had some exciting news to share in the last few weeks. If you are an NBA fan you may be familiar with Dan Gilbert, the Cleveland Cavaliers owner, and may also know that his son,<a href="http://www.cleveland.com/cavs/index.ssf/2011/10/neurofibromatosis_cant_change.html"> Nick, has NF1.</a> Dan and his wife, Jennifer, have been significant supporters of neurofibromatosis research.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUwaZy2zO2c1Puvj5QeO1C4hMVxNfQTIwARXI0FPYQRBmcU36CTS3Vh5EK0UZgEKuaFytrBd5j3vTLhYwHhhasgFYu-ffghrRU-ELSZkArXEln7TYrafB9BseXeuu7yPmKOhi7/s1600/lottery_130521.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUwaZy2zO2c1Puvj5QeO1C4hMVxNfQTIwARXI0FPYQRBmcU36CTS3Vh5EK0UZgEKuaFytrBd5j3vTLhYwHhhasgFYu-ffghrRU-ELSZkArXEln7TYrafB9BseXeuu7yPmKOhi7/s1600/lottery_130521.jpg" height="150" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nick and his dad, Dan, winning the 2013 NBA Lottery</td></tr>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 32px;"> Last year the Gilberts hosted a fundraising gala </span><span lang="EN" style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 32px;">"The BeNeFit - A Celebration to Beat NF", </span><span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 32px;">that raised over $2 million for NF research. At that event, the Strength and Honor Award was given to a young man named Victor Chukwueke, whose story is nothing short of incredible. <a href="https://www.youtube.com/watch?v=N2uBqznEaNM">We encourage you to see his story here</a>. It is truly inspirational and touches our hearts as parents of children with NF1. </span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 32px;">Recently, Dr. Korf called to let us know that our family</span><span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 32px;"> has been selected as this year's recipient of the Strength and Honor Award. </span><span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 32px;"> </span><span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 32px;"> </span><span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 32px;">To say that we are blown away would be an understatement. It is hard to compare our situation to that of Victor. Our work to establish an Alabama state chapter of the Children's Tumor Foundation is because we cannot just sit and wait for a cure for NF. Our efforts help boost our faith that in our children's lifetime, a cure will be found so that Little Philip and Helen's hearts are not burdened the way ours are for the health and well-being of their children. And so, o</span><span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 32px;">ur family will fly to Detroit in November to receive this honor and look forward to adding this moment of hope to our family's journey to further awareness for the importance of improved funding for neurofibromatosis research. Helen and Little Philip are beyond excited to fly for the first time, and Helen is already planning her fancy attire. </span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 32px;">We don’t know what the future holds with our medical conditions but we do know that we will continue to talk about our experiences and will offer encouragement and guidance to support others diagnosed with neurofibromatosis. As always, thank you for your love, your prayers, and all manners of support and encouragement you provide to our family. </span></div>
Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com5tag:blogger.com,1999:blog-18042819.post-86241986669270016402014-07-14T23:32:00.002-05:002014-07-16T15:54:38.151-05:00When God Doesn't AnswerMy son was first diagnosed with neurofibromatosis in 2011. There was such unimaginable heartbreak in my life that year that I had to fight very hard to stay strong and be the very best mother I could be to both of my children, hiding the dark fears and anxiety that plagued me during a time of great grief and sorrow. I look back at that time and realize I was desperately holding onto my faith, but also holding my breath and waiting for an ending that I prayed I might share in countless testimonies. Given my story, it would no doubt pack houses of God with wives and mothers eager to hear how God made good out of utter despair. I could win the race to make it to God's glorious victory lap He had in store for me. The race turned into a marathon that is still in progress in 2014.<br />
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I am a woman of faith, a faith that has grown deeper due to a journey these past few years that I would not wish on anyone. I have tried to come up with a more eloquent way to express this, seeking a more optimistic and encouraging story that may be of some use or encouragement to others. I read the Bible, sometimes intently, sometimes half-hearted, sometimes dismissing it for weeks or months at a time. I seek and read stories of endurance through great trials and even greater heartbreak than my own. I compare my pain to the misfortunes of others who have the courage to be vulnerable in sharing their stories. I feel brief solace in the recognition that things could be worse, but I quickly seek forgiveness for such a feeling, overcome by strong feelings of guilt for having the audacity to compare my difficulties to those of others for my own selfish reasons. I wake up asking for wisdom, and I go to bed asking for wisdom. I seek wisdom to know God's plan for me, for my son, and for my family. I believe God has a plan to prosper and not harm me (<a href="https://www.biblegateway.com/passage/?search=Jeremiah+29:11-13">Jeremiah 29:11</a>) and I repeat this verse to myself often. I memorize and hide countless verses in my heart in an effort to bolster my spirit so as not to succumb to the fears and anxiety and let darkness take hold of my heart. <a href="https://www.biblegateway.com/passage/?search=Romans+12%3A12&version=NIV">Romans 12:12</a>, <a href="https://www.biblegateway.com/passage/?search=1+Thessalonians+5%3A16-18&version=NIV">1 Thessalonians 5: 16-18</a>, and my latest favorite, <a href="https://www.biblegateway.com/passage/?search=Isaiah+45%3A3&version=NIV">Isaiah 45:3</a>. </div>
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A friend recently wrote to me and said "I pray that should my family ever face struggles like yours, that I would be able to face them with the same strength as you do." I am so appreciative of encouragement like this. I am forever indebted for the thousands of prayers that have been said on my behalf, and on behalf of each member of our family. Something deep inside of me shudders to think where I would be without the power of these prayers in my life. But in the last few months, the marathon has worn me out. I am battling with God about what his will is for my life and the life of my child. My latest attempt to make sense of this side of heaven is in the book <i><a href="http://www.goodreads.com/book/show/1166621.When_God_Doesn_t_Answer_Your_Prayer">When God Doesn't Answer Your Prayer</a>,</i> by Jerry Sittser. I try hard not to place my hope in this book because I learned the hard way that my hope cannot be rooted in anything earthly. I do hope that this book provides additional wisdom to me. Sittser clearly shows a biblical support for why God can handle my anger and my complaints, literally my assault on his power. He gives examples of Job and Jeremiah, who called God to account. In these stories, these men finally snapped and let God have it. My fear is that the point of this book, like so many I have read before, is to share that I am to use my pain for the betterment of God's kingdom. And if that is what I am called to do, I will do it. I've already accepted that role as a Christian. But doing it with joy and steadfast hope is the challenge. </div>
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With a clenched and angry jaw I cry out to God...</div>
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What about my son's illness could possibly bring you glory? </div>
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Why would you use a child as your pawn?</div>
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Why a mother's desperate love for her child to seek your own glory? </div>
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Where is your grace in all of this?</div>
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Why would I share this terribly depressing part of my heart in such a public way? Perhaps sharing where my faith is right now is more transparent and honest than simply saying "God is good, all the time." I feel myself the greatest hypocrite when people praise me for my incredible faith and spiritual strength. I desperately needed to confess where I am right now because I know I live in a broken world with other believers who have had their heart torn to pieces by circumstances different than my own. I want them to know they are not alone and that at the very least, I know God can handle the anger and resentment, the questions, the cries of feeling betrayed, the agony of seeking His grace and redemption when he seems (I stress <i>seems</i>) to turn His back on our fervent prayers. I don't know anything else but to continue to pray that God will come quickly and reveal to me the light I so desperately seek that only He can provide. The wait seems insult to a barrage of injury but I am confident He will answer.</div>
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<i>The best prayers often have more groans than words.</i></div>
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- John Bunyan</div>
Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com0tag:blogger.com,1999:blog-18042819.post-12931599780910430132014-07-02T17:45:00.004-05:002014-07-22T08:54:30.972-05:00July Oncology Consult<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Clinic 8 waiting room at Children's Hospital</td></tr>
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Today we made the short trip to Clinic 8 at Children's Hospital to meet with Dr. Reddy, pediatric oncologist. We met with her in March, and the recommendation then was not to make any decisions about chemo and to wait until the June 2014 MRI. As a reminder, <i>Philip does not have cancer</i>. He does have a large nodular plexiform tumor in his neck that is displacing his carotid arteries and has begun to push on his airway. It fully involves many important nerves so the idea of surgically removing it is not up for discussion, unless it becomes a life threatening situation. There is always the 10-15% chance that his tumor could turn malignant. Surgery is our last resort due to the significant risks and permanent life altering nerve damage that would result.
Because of the shape of the tumor, its growth has been measured in volume and has been slow and steady.<br />
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There was a growth in volume from January 2014 to June 2014. Over all, the tumor appears to have gone from 80ml to almost 160 ml over 18 months of MRI imaging. Philip has no pain and no difficulty breathing or swallowing, although mom (Renie) notices more heavy breathing lately (possibly her paranoia or what she calls <i>intense concern</i>). Our concern is that we will watch this slow tumor growth take over everything in his neck and be left with no choice but to operate.<br />
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The main problem with chemo options is that there is a low success rate of any available drugs working due to the slow growth of neurofibroma tumors. They just behave differently than cancer and other malignant tumors. The same drugs will not work on NF tumors. We understand that the success rate of the drugs in use today for NF tumors is around 20%. The reason we would take such a low percentage chance is that this is our only option. Philip does not qualify to participate in one of the latest clinical trials that offers the latest chance of hope until he is sixteen. He turns nine next week. And, as with any clinical trial, there is no evidence that this latest trial is the miracle drug over 2 million people worldwide affected by NF desperately need.<br />
<br />
The drug we are considering is called <a href="http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(12)70414-X/fulltext">Gleevec</a>. It is a twice a day oral chemo drug with relatively low side effects. Dr. Korf will consult with Dr. Reddy before our appointment with him on July 24th to make sure that our medical team agrees on this step in Philip's NF journey. We want to make sure this decision does not remove us from any future clinical trials in progress that may offer more hope.
There are no easy answers. <br />
<br />
There is no clear path. We do not feel confident in this decision. However, we feel even less confident doing nothing.
Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com0tag:blogger.com,1999:blog-18042819.post-9560442513885305652014-05-13T16:59:00.000-05:002014-07-02T21:57:23.950-05:00Birmingham NF Walk<div class="separator" style="clear: both; text-align: center;">
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<span 14px="" 20px="" arial="" font-family:="" font-size:="" grande="" helvetica="" line-height:="" lucida="" sans-serif="" tahoma="" verdana="">How can I put into words what has been running through my mind and heart since Saturday? Family and friends, we are truly blessed this side of heaven by all of you. Thank you so much for sharing your time, your talent, your treasure, to help Alabama NF families host our first annual Birmingham NF Walk. We had over 400 registered walkers, and</span><span 14px="" 20px="" arial="" class="text_exposed_show" font-family:="" font-size:="" grande="" helvetica="" inline="" line-height:="" lucida="" sans-serif="" tahoma="" verdana=""> the Alabama CTF community raised over $52,000 for <a href="http://www.ctf.org/">Children's Tumor Foundation</a>. Team Moss had walkers and donors that are former students or colleagues from Birmingham-Southern College, Samford University, Mississippi State University, Centre College, Wesleyan College, walkers from our wonderful Mountain Brook Community Church family, our current Blind Brook Lane neighborhood, our Vestavia West school community, our Trinity CDC family, our former Montgomery Lane neighborhood friends, our high school friends from Haywood County and Homewood High School, our Faith Presbyterian friends, cub scout friends, gymnastics friends, Bible club friends, friends from our time at Mountaintop Preschool, family that came from Tennessee, Mississippi, Georgia, from all over Alabama, dear friends from Vanderbilt, Mississippi State, my amazing Samford students and colleagues, and the list goes on and on. I have never liked being in the public eye but when it comes to fighting for my children, I'm willing to put myself in any position to raise awareness to bring us closer to finding a cure for NF in their lifetimes. Thank you, dear ones, for joining us in this fight, and for your continued prayers that so encourage us.</span><br />
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Remember way back in <a href="http://mosshouse.blogspot.com/2013/11/little-philip-update-and-dr-korfs-award.html">November</a> when we met with <a href="https://www.childrensal.org/team">Dr. Peter Ray</a> to discuss removing what appeared to be a growing tumor on Philip's forehead? At that time, Dr. Ray elected to wait, see what the tumor looked like in the January 2014 MRI, and then make a decision. He wanted to make sure we were not sacrificing any nerve function around the eye and forehead. We met with him in February and elected to move forward with surgery. March 24th, Dr. Ray removed the tumor, and even though we held out a small hope that the "growth" was not a tumor, the pathology report came back as neurofibroma tumor tissue. The good news is that Dr. Ray was able to completely remove the tumor without any nerve damage. He was extremely detailed in reviewing every single concern, and that's the kind of doctor this mama likes. Give it to me straight, and don't leave anything out. </div>
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We met with Dr. Ray today for our post surgical appointment and gave him a huge high five for a successful surgery. There will be a small scar on Philip's forehead but it is not noticeable due to his boy band haircut. We will meet with Dr. Ray again in about six months to double check for any tumor regrowth but for today, we are calling this a victory in our NF journey. Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com1tag:blogger.com,1999:blog-18042819.post-67093649903239892612014-04-08T10:59:00.004-05:002014-04-08T10:59:46.757-05:00NF Walk Update and Little Philip Update<span style="font-family: arial, sans-serif; font-size: 13px;">We thank you for the sacrifice of your time and resources to support research to fund a cure and treatment for</span><span 13px="" arial="" font-size:="" sans-serif=""> </span><span style="font-family: arial, sans-serif; font-size: 13px;">neurofibromatosis</span><span 13px="" arial="" font-size:="" sans-serif=""> </span><span 13px="" arial="" font-family:="" font-size:="" sans-serif="">(NF). When we started this medical journey with Little Philip over two years ago, we never expected to be the recipients of so much prayer, so much love, so much support. We are forever changed as a family because of NF but have always been surrounded by your love and for that, we are eternally grateful.</span><br />
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<b><u>For those that have donated but are unable to be with us on <span class="aBn" data-term="goog_1255524386" style="border-bottom-color: rgb(204, 204, 204); border-bottom-style: dashed; border-bottom-width: 1px; position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">May 10th</span></span>. THANK YOU!</u></b></div>
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<i>As of today, Team Moss has raised $11,040 and currently has 130 members!</i> Team Moss is comprised of family, friends both near and far, our children's classmates atVestavia West Elementary, former classmates from Trinity Child Development Center, friends from our Mountain Brook Community Church, colleagues and college friends from Birmingham-Southern College, Samford, Vanderbilt, Mississippi State, and neighbors. In the name of research we've even let in a few Ole Miss Rebels. Overall, the 1st annual Birmingham NF Walk is just $5000 from meeting its $30,000 goal with one month to go. Please share our NF story (attached) with your family and friends to help us meet our overall goal and to increase education and understanding of what NF is. Here is a quick definition:</div>
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<span style="background-color: #e2e1e0; color: #333333; font-family: helvetica, arial, sans-serif; font-size: 12px; line-height: 15.6px;"><i><b>Neurofibromatosis (NF) is a genetic condition that causes tumors to grow throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, and learning disabilities. </b></i></span></div>
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<b><u>For those that will be joining us in Birmingham for the walk on <span class="aBn" data-term="goog_1255524387" style="border-bottom-color: rgb(204, 204, 204); border-bottom-style: dashed; border-bottom-width: 1px; position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">May 10th</span></span>:</u></b></div>
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We recognize that many of you are coming from out of town and have asked for recommendations for nearby hotels. We recommend <u><a href="http://www.ihg.com/holidayinn/hotels/us/en/homewood/bhmls/hoteldetail" style="color: #1155cc;" target="_blank">Holiday Inn Birmingham/Homewoodlocated at 492 Wildwood Circle North in Homewood</a>, </u> just off of the Lakeshore Drive exit of I-65. This hotel has an indoor pool and kids eat free in their reasonably priced hotel restaurant. There are several chain restaurants and fast food locations within walking distance, along with a Starbucks for those of you who share Renie's affinity for good caffeine. Additional hotel recommendations that are in that same area, literally just down the same road - <a href="https://m.lq.com/lq/properties/propertyProfile.do?ident=LQ949&propId=949&promocorp=DDPKG" style="color: #1155cc;" target="_blank">La Quinta Inn and Suites</a>, and <a href="http://hamptoninn3.hilton.com/en/hotels/alabama/hampton-inn-birmingham-i-65-lakeshore-drive-BHMLSHX/index.html" style="color: #1155cc;" target="_blank">Hampton Inn</a>. </div>
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We are working on plans to have a Team Moss celebration party after the walk <span class="aBn" data-term="goog_1255524388" style="border-bottom-color: rgb(204, 204, 204); border-bottom-style: dashed; border-bottom-width: 1px; position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">on Saturday</span></span> evening for those that are in town and can join us. </div>
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<i><u>If you would please reply to mossrenie@gmail.com and let us know</u></i></div>
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1. When you plan to arrive and where you are staying</div>
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2. If you are in town <span class="aBn" data-term="goog_1255524389" style="border-bottom-color: rgb(204, 204, 204); border-bottom-style: dashed; border-bottom-width: 1px; position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">Saturday, May 10th</span></span> night. </div>
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3. Your t-shirt size and sizes for anyone else registered within families. (this is very important!)</div>
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Your reply by <span class="aBn" data-term="goog_1255524390" style="border-bottom-color: rgb(204, 204, 204); border-bottom-style: dashed; border-bottom-width: 1px; position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">April 26th</span></span> will help us in planning a fun and memorable weekend. If you have any other questions, please do not hesitate to contact us.</div>
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<b>For those that are still considering donating to CTF or joining us to walk on <span class="aBn" data-term="goog_1255524391" style="border-bottom-color: rgb(204, 204, 204); border-bottom-style: dashed; border-bottom-width: 1px; position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">May 10th</span></span>:</b></div>
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Please donate or register at the web page for <a href="http://ctf.kintera.org/faf/search/searchTeamPart.asp?ievent=1100933&lis=1&kntae1100933=260C643AB143440FBDEA77C14DF7871E&team=5833205" style="color: #1155cc;" target="_blank">Team Moss here</a>. Be sure to select the "Join Team" button or "donate now" button on the right hand side of the screen. </div>
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<b><u>How is Little Philip doing?</u></b></div>
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Just over one month after the NF Walk, Little Philip will endure his sixth MRI in less than three years, requiring general anesthesia due to the location of the tumor in his neck. After four separate specialists appointments and a thorough review of his case in the past few months, his medical team has not been able to agree on a chemotherapy drug that would halt the growth of this particular type of tumor. As a result, the tumor is slowly encroaching on his airway. We know there are many worthwhile charities to support but please understand that NF is a a tough contender to receive attention from the "big dogs" at American Cancer Society and larger non-profits who that have huge overhead administrative costs. Philip's doctors are wholly supportive of our support for Children's Tumor Foundation's strategy (<a href="http://www.ctf.org/About-the-Foundation/Our-Progress-Landing.html" style="color: #1155cc;" target="_blank">financial report here</a> ) due to the low administrative costs, and significant funding directly from the Children's Tumor Foundation for clinical trials that one day, may offer hope for our son. Here in Birmingham, our doctor, Bruce Korf, literally wrote the book on Neurofibromatosis. </div>
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If you do not feel led to respond to this NF Walk, we would welcome the opportunity to discuss one on one with you what the Children's Tumor Foundation does and why we endorse and encourage your support. We are now the state leaders for the Alabama chapter of Children's Tumor Foundation and are committed to four goals: fundraising, advocacy, patient engagement, and support for newly diagnosed individuals and their families. </div>
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Please forward this email and share our family blog at <a href="http://www.mosshouse.blogspot.com/" style="color: #1155cc;" target="_blank">www.mosshouse.blogspot.com</a> to increase awareness and help us connect with other families affected by NF. If you have friends that would like to make a donation in the name of Team Moss directly to the Children's Tumor Foundation by mail, I have attached a donation form that can be included with donation. I have also attached the Team Moss flyer to this email that shares our NF story. </div>
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On behalf of Team Moss, we thank you and look forward to hearing from you soon,</div>
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Renie and Philip Moss</div>
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<a href="http://vimeo.com/83359985" style="color: #1155cc;" target="_blank">View the Moss Family NF video here</a> posted on the UAB Department of Genetics homepage. </div>
Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com0tag:blogger.com,1999:blog-18042819.post-29699393842790552272014-03-21T08:48:00.000-06:002014-03-21T08:51:31.856-06:00Helen's 6th Birthday We celebrated Helen's sixth birthday this past week. Six years ago we were ill prepared for the day she was born. My husband and I were in the middle of a raging stomach bug that had left me incapacitated the previous 72 hours. My husband had succumbed to it the night before her arrival, announcing at 6:00 a.m. that he was not leaving the bed. With full empathy for what he was experiencing, I started the day with the intent of allowing him the grace and support he had offered me the previous three days. As I exited the shower sometime around 6:30 am my water broke. Poor hubby dragged himself out of the bed as we quickly rushed to get two year old Little Philip to day care for the day and make the necessary phone calls to both sets of grandparents to begin their drive from out of town to meet us. Helen arrived a little after 2:00 p.m.. March 18, 2005, a healthy 7 pounds, 12 ounces. She was supposed to arrive some time around April 6, 2005. I still clutch my belly thinking about what another three weeks would have shown on the newborn scale.<br />
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Early. If there is one word to describe Helen, that would be it. She was our surprise gift from God, as we learned in 2004 that our silly earthly plans were out the door, and heavenly plans were in progress for us to become a family of four. She was an early arrival on March 18, 2008. And as any friends or family know, Helen is an early riser. The only time she has ever slept until 8:00 am was due to a fever. She is a planner, providing early instructions for her seventh birthday within minutes of her sixth birthday party ending. Writing letters to Santa on December 26th each year for the next year. While the early rising is clearly inherited from her daddy, the early planning and execution of complex event coordination is most definitely inherited from her Type A mother. </div>
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Happy birthday, Helen. You are such a joy and light to us and everyone that knows you! </div>
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Helen also saw Dr. Korf this week for her annual NF check up. While she has a few new harmless cafe-au-lait spots, common in children with neurofibromatosis, there were no concerns. Now that she is six, we are about a year away from being mostly out of the woods for any potential optic glioma tumors and plexiform tumors that usually present before age seven. Hooray for some good news and the ability to breathe a little easier as spring arrives! But, as an expert planner and providing early communication for the Birmingham NF Walk, Helen reminds everyone that has not yet registered for the May 10th Birmingham NF Walk to do so today! Visit <a href="http://www.nfwalk.org/al">www.nfwalk.org/al </a>to register or donate. </div>
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Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com1tag:blogger.com,1999:blog-18042819.post-35091391554636878272014-03-11T21:54:00.000-06:002014-03-12T08:01:07.676-06:00Oncology Consult Review<div class="separator" style="clear: both; text-align: left;">
We completed our final consultation today with Dr. Alyssa Reddy, pediatric oncologist at Children's Hospital here in Birmingham. We checked Philip out of school around 10:00 a.m. and headed to the Egg and I for brunch so that he could use his reward coupon he earned from Mrs. Krusinski for being a diligent reader. Since it is due to expire March 21st, he has been rather insistent that he be able to use it soon. This seemed like the perfect day.</div>
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From there we headed to Clinic 8 at Children's Hospital for our noon appointment. Let me just say that it is a place of great hope, anxiety, and fear and probably everything in between. This is the hematology and oncology clinic. Many children were wearing masks and some were clearly undergoing intense treatment. Parents looked tired, encouraged, worried, hopeful, exhausted, and I'm probably missing 90% of what was really going on in the hearts in that room which makes me completely inadequate to communicate. We observed nurses and other staff calling patients by name, passing through the waiting room greeting children and families with warm smiles, kneeling down to get on the level of each child. There is a strong sense of dedication and care in Clinic 8. If this is where we may be spending some time in the future, it was an encouraging observation to file somewhere in the back of my mind...just in case.</div>
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Dr. Reddy was very informative and made us feel very confident that she had fully reviewed Philip's medical situation. I don't think we expected to be given a silver bullet to cure Philip today but I think we had talked ourselves into expecting to hear about an encouraging chemotherapy option for our son. </div>
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Dr. Reddy talked about two drugs that we knew about and gave us the name of a new one (Tamoxifen) to consider as she and the rest of our medical team talk about what direction we take. None of them offer a guaranteed positive outcome but have shown some improvement for some patients. I guess we knew this but hearing it again just stinks. For now, we will remain in the wait and see mode. We will wait until after the next MRI in late June to have another check on tumor growth rate. We will wait until summer before a decision to start on a chemo regiment that will be less invasive for a school-age child. We will wait until July in the hope that a miracle cure will be discovered in the next four months. We will wait....</div>
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That sounds pretty dismal but this is just the reality of living with NF. "Time is on our side" is the quote I remember most from Dr. Reddy today. These NF tumors are very slow growing and that is one reason why they do not respond to typical chemotherapy drugs. Slow growing is good in that Philip is still not experiencing any pain or risky symptoms from his tumor. Slow growing is bad in that we just do not know if and when a symptom may show up that warrants action. One month, one year, two years, 10 years? If the tumor continues to encroach on his airway, what can we do? Is that action chemo? What if that fails? Surgery? We just don't know. As of March 11, 2014, there is no effective intervention to confidently shrink Philip's tumor. We would love for someone to tell us we are wrong.</div>
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So ending on some positives:</div>
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1. Philip is NOT IN PAIN</div>
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2. Philip is not showing any serious concerns other than the obvious cosmetic issue of a large tumor</div>
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3. Fellow students and friends are not bullying or treating Philip differently because of his tumor. </div>
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4. Philip seems ok with talking to peers who ask him "what's wrong with your neck."</div>
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5. Dr. Korf is a rock star in the NF world. We are in the best hands possible. </div>
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6. God has our precious son in the palm of His hand. He's got this. </div>
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7. God has placed such a strong community of support around us through our church, community, and work place. The outpouring of prayers and thoughts has been incredible. </div>
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No one could have prepared us for how much we would need #7. #7 reminds us that #6 is true when we find ourselves doubting and then we remind ourselves of #1-5 to return us to the peace of trusting #6 again. As someone who is a complete control freak, it takes a lot to admit I need something that I can't do for myself or my family. This is a hard lesson for me in allowing the body of Christ to minister to our family and for me to be ok with admitting that we need it and accept it. We need it and we are so grateful for all the love and support we have received.</div>
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So, if you haven't had a chance to sign up for the Birmingham NF Walk scheduled for May 10th, perhaps this update will motivate you to join with us, Team Moss, to raise funds and awareness that moves the Children's Tumor Foundation towards making our hope a reality in finding a cure for NF in our children's life time. Sign up to "Join My Team" or "Donate" on the right hand column of<a href="http://ctf.kintera.org/nfwalkbirmingham2014/teammoss"> Team Moss's fundraising page. </a></div>
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<tr><td class="tr-caption" style="text-align: center;">Image from Philip's January 2014 MRI. The white mass on the left is the tumor. His jaw line is on top, spinal column in the center bottom. The tumor is NOT in his brain but rather, in the neck. The solid black area in the middle is his airway. This shows why airway is our greatest concern for tumor growth.</td></tr>
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<br />Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com1tag:blogger.com,1999:blog-18042819.post-32566178182757091952014-02-25T21:39:00.001-06:002014-02-25T23:12:11.019-06:00ENT Consult Review<div class="separator" style="clear: both; text-align: center;">
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Today we met with Dr. Audie Woolley, Philip's ENT. Dr. Woolley did the original surgery on Philip back in 2011 that resulted in his NF diagnosis. That little 2 cm tumor he removed back then has grown significantly, and is now the subject of many, many medical voices as everyone seeks to provide the best medical recommendation moving forward.<br />
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So our consult today was not good news. Dr. Woolley was professional, kind, and incredibly informative. We truly appreciated it when he asked the nurses to take Little Philip out to the lobby so he could speak candidly with us as parents. When he returned, he shared that Philip's situation is very bad. Basically his neck is full of golfball sized tumors. Dr. Woolley differed in opinion from Dr. Korf's opinion in that Dr. Korf believes the neck to be one large lobulated nodular tumor. Dr. Woolley's opinion is that there are several lobular tumors, all involving different nerves. Neither opinion changes where we stand right now. The main tumor of concern does involve the <a href="http://en.wikipedia.org/wiki/Vagus_nerve">vagus nerve</a>, as Dr. Korf had previously indicated. This is the most concerning of the tumors due to its encroachment on the windpipe and esophagus. To operate at this point would mean loss of significant function. The only reason we would operate is if Philip develops issues with breathing, swallowing, or if he develops debilitating pain from his tumor. There is a mild obstruction in his throat due to the tumor but it is not currently affecting his breathing or swallowing. If we do have to operate this is what we are facing:<br />
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Tumor on the 12th cranial nerve - partial loss of tongue movement<br />
Tumor on the 11th cranial nerve - significant loss of shoulder movement and nerve function<br />
Tumor on the vagus nerve (10th cranial nerve) - loss of voice box function, permanent hoarse voice<br />
Tumor on the 9th cranial nerve - partial loss of sensation at back of throat <br />
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Dr. Woolley estimates there are about 6-8 tumors in Philip's neck, all involving major cranial nerve function, and again, the one of greatest concern is the vagus nerve, also the hardest to get to should we need to operate. People can function without a vagus nerve, but aside from the loss of a voice, many people have significant abdominal issues with reflux or emptying of the abdominal cavity. It's not pretty but it is doable. We pray we don't have to find out. <br />
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He strongly encouraged us to consider chemotherapy to try to shrink or stabilize these tumors. He said he would consult with <a href="http://www1.uabhealth.org/UAB_PF/physician_3026_Alyssa_T_Reddy">Dr. Alyssa Reddy</a>, pediatric oncologist, after our March 11th consultation with her, and as with other specialist we have met with, all would report back to Dr. Korf who continues to serve as our "quarterback" to call the best shot Little Philip has. <br />
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Dr. Woolley shared that he has had about three significant NF patients in his 20 years of ENT practice. He has consulted with the "big guys" as he calls them down at UAB, including <a href="http://www.uab.edu/medicine/surgery/oto/faculty/faculty/carroll">Dr. Bill Carroll</a> and <a href="http://www.uab.edu/medicine/surgery/oto/faculty/faculty/rosenthal">Dr. Eben Rosenthal</a> about Philip's case and they all agree that surgery means significant morbidity, meaning, sacrifice of significant bodily functions. We like what we see on all three online vitaes for these three men and are appreciative of Dr. Woolley's professional approach to seeking multiple perspectives prior to meeting with us. Dr. Woolley is highly regarded in his medical field. We are in good hands.<br />
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While we were viewing the MRI with Dr. Woolley in the clinic's computer kiosk area, we sensed the concern on the faces of nurses and other medical personnel as they watched over our shoulders the computer screen showing the massive bright white tumors that take up so much of the space of our son's neck. As we exited the clinic, the silence was deafening, We passed through a sea of smiling faces whose eyes turned quickly to Little Philip, revealing great concern for him. It was almost too much for us to hold our emotions together and not fall apart in front of our son.<br />
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The patience required of us until our March 11th oncology appointment is torture. But as anyone that has followed our story knows, we believe in a greater God than this broken, messed up world offers. We continue to hold firm to our faith that God has great plans for our son. Little Philip's sweet spirit and incredible passion for being a good friend to everyone is a sweet balm to our weary parental souls. His smile, his giggles, his silly personality, it makes our hearts burst with love for him. God intends him to be a light in this dark world. We believe that with every fiber of our being. <br />
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A sweet friend was such an encouragement to me today. She reminded me of a beautiful verse that has spoken volumes to my heart today as I tried to keep it together and carry on with the day as a mother, wife, employee, and friend.<br />
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<i>And I will give you treasures hidden in the darkness - secret riches, I will do this so you may know that I am the Lord, the God of Israel, the one who calls you by name. </i><br />
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<i>-Isaiah 45:3</i></div>
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That verse is going up all over our house as we bind it to our hearts and minds in the coming weeks. We pray that it may be an encouragement to you as well, if you are facing darkness and fears in your own life. </div>
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We continue to covet your prayers and good thoughts, specifically for Little Philip but also for us as parents as we seek to be loving, and encouraging to our son.</div>
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<br />Mosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.com9