Will Nailen

First post: 2/27/2017 Latest post: 11/14/2017
Welcome to Will's CaringBridge site.  We are using it to keep family and friends updated on Will's journey.   We appreciate your support and words of hope and encouragement, but most importantly, we covet your prayers.  Visit often to get the latest updates on Will and please don't hesitate to leave us a note...  

Will is a 13 year old seventh grader at Pizitz Middle School.  He is an active member of the Covenant Presbyterian Church Jr High ministry and Vestavia Hills WyldLife.  He is a social butterfly who truly enjoys spending time with his family and friends.  When he is not in school, he enjoys running cross country, playing soccer, attending Covenant & WyldLife camps/retreats and being at the lake, but his real passion is wrestling.  Will has been grappling since he was a toddler, and it was in January during this year's wrestling season that Will first noticed some pain and tingling in his left leg.  

Here is a brief timeline of the events that have transpired to get us to where we are today...       

Monday, February 6
We took Will to Andrews Sports Medicine the day after the Metro Wrestling Championship to get his leg checked.  The diagnosis was a "Tug Lesion", which apparently is an overuse injury and the treatment was rest...  After two weeks of inactivity, his condition had not improved, which was concerning. Will is young and healthy, his body should have reacted positively to the rest and showed signs of improvement.  So after wise counsel with our friend, Dr. Scott Hill, on Sunday (2/19) following the High School Wrestling State Tournament, we called the doctor back to move up his follow-up appointment and request an MRI.  


Wednesday, February 22
We took Will to Andrew's Sports Medicine at 8:30 AM for his follow-up appointment and to request an MRI.  After a quick exam, Dr. Casey agreed and sent us downstairs for an MRI...  Later that evening, we were blind sided when Dr. Casey called to let us know they found an "aggressive mass on Will's left iliac wing" (which is his pelvis) and they were referring us to Dr. Nicole Behnke, a Pediatric Orthopedic Oncologist at UAB Highlands.   Dr. Casey told us she would begin trying to reach Dr. Behnke's office first thing Thursday morning to get us an appointment.


Thursday, February 23
We were waiting anxiously for a phone call, but ultimately decided to follow the advice of Dr. Scott Hill and go back up to Andrew's Sports Medicine to request a copy of the MRI and see if they were able to get us an appointment with the oncologist.  We left the office shortly after with a copy of Will's MRI and x-rays and the contact information for Dr. Behnke.  I immediately called and was able to secure an appointment on Friday, February 24.  We were hoping to get in sooner because we were extremely concerned, but it was the best we could do...  In the meantime, I face-timed a close friend, Dr. Scot Sherwood, who is a radiologist, so he could review the images with us.  Scot is a brilliant guy whom I trust completely.  After reviewing the images, his conclusions were "this does not look good and is definitely something to be concerned about."  His initial opinion was Ewing Sarcoma, but also shared there are other possibilities and we would not know for sure until after a biopsy.  Needless to say, this heightened our level of anxiety and fear.  

Thursday was one of the darkest days of our lives.  We immediately started contacting family and friends to ask for prayers.  We decided not to tell Will or our other kids until we knew for sure what we were dealing with.  Neither Meg or I slept Thursday night, as we wrestled with ever possible scenario imaginable, most of which were heartbreaking.


Friday, February 24
We took the kids to school and then prepared for how we would tell Will.  Ultimately, we decided not to tell him anything other than the doctors called and want us to come in so we could review the results...  Meg texted Will after lunch and let him know we were picking him up early from school to go see the doctor.  At 2pm, we checked him out of school and headed to UAB Highlands.  He was upbeat and excited about the prospect of finally figuring out what was causing the pain.  He had no idea of the severity of his condition and what was to come.

At 3pm, we met with Dr Behnke.  She knew Will did not know anything and handled the situation with such compassion and care, avoiding the words "cancer", "chemo", and "radiation", but still managing to explain exactly what was happening to him.  Her compassion and the way she handled such a difficult discussion was an answered prayer.  Here is what we were told:  

>  Preliminary diagnosis was Ewing Sarcoma, but needed a  biopsy to verify. 
>  Thinks we caught it early and the tumor is approximately 2-3 months old.  
>  Thinks we were fortunate in ordering the MRI when we did.  
>  Will's tumor is the size of a lemon.  Usually the tumors are 4-5 times the size of Will's tumor by the time they are detected in this location.   
>  X-ray of  pelvis looked good which hopefully means there has been very little if any bone damage from the cancer thus far.
>  X-ray of chest looked good which means there is an 80% probability that the Sarcoma has not spread to his lungs, but need CT scan to verify.
>  Next steps:  Biopsy, CT Scan, PET Scan, Ultra-sound, EKG and blood work at Children's Hospital.  


Wednesday, March 1
We took Will to UAB to get a biopsy.  The doctors got four (4) good tissue samples of the tumor without any complications.  After the procedure, we were told it would take up to 7 days to get the biopsy results, and we would be contacted by Dr. Behnke for next steps.


Monday, March 6
Will had his CT Scan, ultra-sound, blood work, and EKG.  Afterwards, we sat down with his medical oncologists, Dr. Whalen and Dr. Payne, to discuss his diagnosis and test results.  Here is what we learned:

- Official diagnosis is Small Cell Osteosarcoma (bone cancer).
- CT scan of his lungs was clear !!  So no cancer cells in his lungs.  Praise be to God... 
- PET scan tomorrow...  They want to rule out that the sarcoma has moved to any other bones in his body.  
- Chemotherapy treatments are scheduled to begin Thursday, March 8


Tuesday, March 7
Will had a PET Scan and hearing test to determine his "baselines".  Hearing test results were immediate but we had to wait on the PET Scan results.  Shortly after returning home, Meg got the call from Dr. Whalen.  She was very excited to tell us that Will's PET scan shows NO other cancer than the original diagnosis in his pelvis !!  Praise be to God...  


Will is obviously extremely upset and scared.  His biggest fear - “what if I can’t beat cancer?”  He is scared of losing his hair, which is not surprising for a 7th grade boy.  He is also worried about what everyone is going to think about him.  The kid loves attention, but not this kind of attention.  He just wants things to be back to normal...  We are doing our best to keep his spirits up and his attitude positive.  This will be extremely important as he begins this battle.  Will is a tough kid and in great physical condition which should be beneficial as he begins treatment. 

It is important to remember that Will is not out of the woods yet and has a tough fight ahead of him.  His opponent is cancer, which is extremely unpredictable.  He will need the support of his family, youth leaders, teachers, coaches, classmates, and friends.  Most importantly, he will need prayers.  We are hopeful that through the power of prayer and God's grace and providence, Will will make a full recovery.

As for specific prayer requests…

- Pray our God would be glorified through Will's battle (Philippians 4:20)
- Pray that Will's faith would be strengthened through God's grace (Psalm 40:1-3)
- Pray for daily patience, courage, physical strength, and a joyous spirit for Will
- Pray that the chemo has maximum effectiveness (90% plus necrosis) in killing the cancer cells  
- Pray that the chemo is effective in preventing the tumor from growing and the cancer from spreading to Will's lungs or other areas
- Pray that the Lord would protect Will's body from the side effects associated with chemotherapy
- Pray that God will give Will's physicians the clarity, wisdom, skill and discernment needed to treat Will
- Pray that the Lord would restore Will to full health in His way
- Pray that our family will continue to find strength and comfort in God's sovereignty, grace, and promises


Our God is an awesome God.  We are just so thankful for those who have been praying for Will and that God has protected Will thus far from this devastating disease.  
 

fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.
Isaiah 41:10

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