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.
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.
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 www.nfwalk.org/alabama
Friday, October 09, 2015
Wednesday, October 07, 2015
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!
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.
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!
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 Alabama NF Walk 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.