Tuesday, December 15, 2015

End of the Year Update

It has been sometime since we updated everyone on our family's activities, especially related to Little Philip's progress since enrolling in the MEK trial through the NIH.  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.

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.

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.

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.

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.

Here, at year's end, we believe our 2015 total funds raised for Children's Tumor Foundation exceeds $32,000.  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.

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.