Friday, March 21, 2014

Helen'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.

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.  

Happy birthday, Helen.  You are such a joy and light to us and everyone that knows you! 

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 to register or donate.  

Tuesday, March 11, 2014

Oncology Consult Review

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.

All smiles!

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.

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.  

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....

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.

So ending on some positives:
1.  Philip is NOT IN PAIN
2.  Philip is not showing any serious concerns other than the obvious cosmetic issue of a large tumor
3.  Fellow students and friends are not bullying or treating Philip differently because of his tumor.  
4.  Philip seems ok with talking to peers who ask him  "what's wrong with your neck."
5.  Dr. Korf is a rock star in the NF world.  We are in the best hands possible.  
6.  God has our precious son in the palm of His hand.  He's got this.  
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.  

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.

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 Team Moss's fundraising page. 

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.