Sunday, March 27, 2016

Who Do You Run For? Help me Fundraise for Miles for Miracles

My cousin sent me a link the other day for IR4.  I had seen tons of posts on Twitter, Facebook and Instagram....  with hashtags #irunforMichael or basically anyone who cannot run who has touched you in someway, so you dedicate your running for them.  It's a heartwarming movement that I have done time and time again when I run a virtual race of one fundraiser or another, or when a fellow runner has been sadly killed while out on a run.  That is one of the things I love about the running community.  We take our running and dedicate those miles for the good, for someone we love, and while we're doing that, we're doing something we love.  Mostly.  

It got me thinking.... who do I run for?  The first person who comes to mind is my mom.  She was not a runner.  Not even close.  But she's no longer with us and I feel very much connected to her when I run.  I feel like she's with me every step of the way...the good and the bad.  While Tucker was going through the surgeries for the tumor on his nose, I ran for him.  While he recovered, I ran for him.  Now that he's healing and able to be an active 12 year old boy again, he gets to run.  Yet, I still run for him.  I still run and pray that he makes a full recovery from this.  That the tumor will never return.  That his scares will fade away and we won't have to put him through further surgeries to fix the skin graft.... Sadly, that isn't looking promising.  As the scar heals, we're seeing some spots that are not healing the way they should.  


the first post skin graft picture he would allow

I've shared our story on here before, but I thought I would share again.   Warning - it's a long one.  

Last winter, sometime in February, we noticed a bump growing in the middle of Tucker's nose.  You couldn't notice it head on, but from a side-view it was apparent.  Being concerned, we took him to our primary care physician.  She didn't even know what to make of it and referred us to see a plastic surgeon.  His diagnosis was cyst and scheduled Tucker for a removal surgery.  April 15th, 2015, was his first surgery.  Seeing my first born go through the surgery was heart-wrenching.  The doctor biopsied the "cyst" and told us he removed everything and that it was just a cyst.  

before all of the tumor growth


A couple of months later, we noticed a bump returning again.  I called the plastic surgeon immediately.  It took a long time to get back in to see him, but when we did, he agreed another surgery needed to be done.  Surgery #2 was August 19th.  He had it biopsied again and told us it was just a cyst.  

after surgery #1


In October, I went away to the Runner's World Festival for 4 days.  When I returned, there was a huge growth in the middle of Tucker's nose!  We went back to the doctor again, and he admitted he didn't know what was going on and suggested we see a dermatologist, an ENT, and get a 2nd opinion.  Due to the timing, we saw the 2nd opinion plastic surgeon (who read the pathology reports from the first two surgeries) and said it was just a cyst and she was going to remove it the same exact way the 1st doctor removed it.  She went on to say the kind of cyst it was, it was going to continue to come back and we'd have to put him through repeated surgeries.  My momma senses told me that this was not an answer we were going to accept.  



The Friday before the Philadelphia Marathon, we finally got into see the dermatologist.  Ward took Tucker there earlier in the day. She told him she would review the pathology report and get back to us in the next week or so.  By 5pm, she was on the phone with me.  She said she didn't have good news. That the growth was not actually a cyst.  That it was actually a benign tumor...and that based on the fast growth, it might not be benign anymore.  She was rather alarmed and said she would be in touch Monday with a plan, but basically she was sending us to Boston.  She didn't know which hospital yet.  



I thought about not going to the marathon.  I wanted to stay with him the entire weekend, but I knew I couldn't do anything about it over the weekend and he was excited about doing fun things with his grandparents, so we went.  And I ran that marathon for him.  

running Philly for my boy

Over the next few weeks, we were convinced he had cancer.   Due to the holidays, things seemed to move super slow.  The dermatologist had the pathology slides read by a specialist in Boston who decided that we needed to go the the Boston Children's Hospital.  We saw Dr. Taghinia, a very talented plastic surgeon just before Christmas.  He reviewed the pathology reports and described our options.  He said he would get back to us as soon as possible (but again, with the holidays it might take longer).  On New Year's Eve, we were heading to Boston for the first surgery.  He removed the tumor and a bit of skin around the area.  He ordered a pathology report which took longer to get results due to NYE, but he found that there was still tumor cells remaining.  In the mean time, Tucker had a cotton ball like bandage sewn to his face (because the doctor wanted to make sure the tumor was completely gone before taking the next steps to repair).  Two weeks later we were in for another removal surgery.  This time he took quite a bit of skin and had to go extra deep.  And another cotton ball was attached to his nose.   




Tucker had already missed 2 weeks of school, because I didn't want to send him in with a cotton ball attached to his face.  At this point, we didn't know how long it would take until he would have the skin graft and see an end..... if we kept him out, it could be another month!  But we left the decision up to Tucker, who chose to go to school.  I was amazed by his strength and courage to face his peers with a cotton ball on his nose.  But he did it.  My strong boy.  



Finally we heard that there was no longer any traces of tumor cells, and it was time to do a skin graft. Because the removal site was so large, the doctor needed to take the skin from his collarbone.  My strong and courageous kiddo took it all in stride and got through surgery like a champ.  This was surgery #5 in less than a year.  




So now, we're over two months after the skin graft, and it doesn't look like there any other bumps or new growths returning to the site.   It's going to take a long time for his nose to look better and it will probably never look normal again, but we're thankful we found a doctor who knew what we was doing and removed the entire tumor.  We are thankful it was never malignant and we are thankful for the strength Tucker showed during all of these surgeries.  We are also thankful for our family who took Izzy several times for long periods of time while we headed off to Boston to take care of Tucker.  



Looking at the big picture, this was just a benign tumor on my kiddo's nose.  Thankfully he never became sick during this process.  During all of our visits to Boston Children's Hospital, we saw many families who would arrive with enough luggage for days, while we would walk in for a day surgery and would be home that night.  We saw babies being wheeled around in their walkers hooked up to IV's, families who spent endless hours/days in the waiting area, much much longer than we spent in there.  I kinda felt guilty for bringing our "minor" issue to a place where the other kids are so much sicker and needed so much more.  



That is why I have decided I need to run for ALL of those kids at Boston Children's Hospital.  That is why I decided to apply for the chance to run on the Miles for Miracles team for the NYC Marathon and accepted the huge task of raising $3000 for Boston Children's Hospital.  I have decided that I need to do this for Tucker, but I also need to do this for every single kid who has been/is still at/will visit Boston Children's Hospital.  I need to help this amazing facility filled with the best nurses, administrative assistants, physicians, staff continue to do what they do so other families can have the best care.  



Part of my participation in Miles for Miracles, is that I get to choose my patient participant.  I couldn't choose "all of the patients"....so I chose the one that is nearest and dearest to my heart.  My first born, my strong and brave kiddo that faced so many scary surgeries in the past year and who's face will never look the same.   But at least the tumor is gone.  I have chosen Tucker as my patient participant and I couldn't be more excited by this!  


Have you known anyone to have to go to Boston Children's Hospital or any Children's Hospital throughout the US?  


I shared this the other day on my blog, but my entries are very low, so I'm sharing again with hopes that I could convince my readers to want to donate $10 (or more!) with the chance to win a great package!  

I'm going to do some big time fundraising between now and October, and I've kicked it off with a Runner's Package - a Trigger Pin, Red Fox wireless earbuds, and Polar Watch.  Retail value $350.  I bought the Trigger Pin, the Red Fox earbuds were donated and the Polar Watch I bought and used a few times, but decided it would be better in a fundraiser!  



How to enter:

The Runner's Package contest will run from 3/23/2016 to 4/07/2016 (midnight, EST).
  • Donate to my NYCM fundraising page. Every $10 donation = 1 entry. Come back here and comment below. Each social media share earns another entry. Comment below with your link to your social media share!
  • 1 winner will be selected using a random method (names in bucket).  
  • Open to Residents of the US only 18 years of age or older.  
  • Winner must have a valid email address.
  • Winner will be notified via email and/or blog post and will have 24 hours to claim prize.  If original winner does not claim prize within 24 hours, an alternate winner(s) will be selected.
  • All winning entries will be verified. 
  • If a winning entry cannot be verified as completed, a new winner will be drawn.  
  • I will mail out the prize package.  

If you commented on my other post after you donated... you are already in the drawing!  

Thank you so much!!!!  And tell me - who do YOU run for? 

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