Monday, July 23, 2012

Always an adventure

This crazy life of ours... at least it's not boring! We had an incredible weekend filled with fun and topped it off with a minor medical emergency. The usual. I'll save the details about the medical incident for the end, because I don't want to damper all of the good updates. 

The Miles for Hope 5K in Riverside Park was a huge success. Thanks to all of you, our team was the largest there with 42 runners, we raised the most money (+$15,000 - more than $5,000 over our goal), and you made me the number one fundraiser among all individuals running. Team SuperTy made quite an impression. When they asked Ty to be an ambassador for the event, I don't think they expected to be flooded with so much love and support. Thank you all from the bottom of our hearts.

After the race, I was asked to say a few words about why the 5K fundraiser was so important to us. It is better in written form, without all of my umm's and you know's so I pasted it below to explain why we were so excited to raise money for this cause.  I am waiting for some better photos of Team SuperTy from the photographer, but here is a shot of our team and the team for Weill Cornell Children's Brain Tumor Project trying to get together for a picture.  My nephews are up front, seven and eight years old.  They finished the 5K in second and third place in the "under 9" category.  I'm so proud of them!

Here's a picture of Ty at the race.  He was so sweet the entire day.  He's doing really well lately - physically and emotionally.  This makes all of us feel as happy as this :)

And here's the gist of what I spoke about at the event:

On August 11th, Lou and I heard the words that no parent should ever hear.  "Your child has cancer."  Ty's first brain tumor was discovered at the base of his skull pressing on his brainstem.  He was two years and ten months old. 

Of course, the first thing we did was research.  We were constantly online looking for information on the best treatment protocols for Ty.  Searching for case studies of other children who have beaten the same type of cancer, grasping for information on how to win this battle.  The problem with brain tumors, especially in pediatrics, is that every case is so differentiated.  The majority of all pediatric brain tumors are rare and unique.  We found little information on proven protocols to treat Ty's rare brain tumor type because it simply doesn't exist yet. 

The first year in treatment was brutal.  He endured 16 surgeries, almost 200 nights in the hospital, infections and unsuccessful chemotherapy regimens that were destroying our perfect baby boy.  Then, in May of 2011, we heard the words even more devastating than the discovery of his tumor in the first place.  Our beloved oncologist told us "there's nothing more we can do." 

Ty's cancer had metastasized into his Cerebellum.  Our hope was deflated, our were hearts broken and our minds were lost in anguish until Dr. Greenfield of Weill Cornell came to us with a surgical option.  In a situation where it would have been much easier to opt out, he showed how vested he is in this fight.  He told us, "I think, with surgery, we can give him a great summer."

Well... two great summers later, Ty remains stable with no evidence of disease and we are forever grateful for the surgery team at Weill Cornell for opting to save his life.   

Ty's recovery has been nothing short of miraculous.  He couldn't be in better hands.  Up until this past March, he was attending pre-school, scooting around the house faster than lightning and learning to walk again.  Unfortunately, he has since suffered another tragic setback as a long-term effect of the harsh treatments we subjected him to.  He suffered post-radiation brain bleeds, swelling and necrosis to the brainstem area that has left him completely paralyzed since April. 

But that can't keep Ty down.  Why else would we call him SuperTy?  He is improving every day.  Again he is beating the odds with his miraculous recovery.  However, this experience has opened our eyes to how important it is that safer, less invasive treatments are discovered for our children.  Which is exactly why we jumped at the opportunity to be part of The Children's Brain Tumor Project at Weill Cornell.  We believe they are going to do amazing things for rare pediatric brain tumors. 

Ty Louis Campbell is here today with no evidence of disease thanks to the grace of God, thanks to his own strength and unbreakable spirit, and thanks to Dr. Greenfield and his team for never uttering the words, "there's nothing more we can do."

I mentioned that we ended the weekend with a medical emergency.  Well, last night Ty was giving us a very tough time about going to bed.  He was so tired, but he just wouldn't give in.  Lou and I were losing our patience with him because we so desperately needed to rest ourselves after a long, exhausting weekend.  Finally, he was ready for bed.  We were so excited that we pulled off his covers to lift him off the couch before realizing that the extension from his belly tube was sort-of wrapped up in it.  His entire Mic-Key pulled out of his belly. 

This is the best illustration I could find so you can understand how it works.  The button sits on top of the skin on his belly, it goes through his skin, muscle and the wall of his stomach, where it stays in place by a bubble that is inflated with saline once inserted through the hole.

Then there is an extention tube that attaches to the button for the feeding (see below).  This is what got caught up in his blanket.  The entire thing pulled out of his stomach, leaving an open hole with belly juice pouring out.  Needless to say, it was stressful. 

When Ty first had the G-tube placed, we were told that if it ever came out we should deflate it and  put it right back in the hole so that it doesn't close.  Then to bring him in to have it replaced by a professional.  This was the first time (and hopefully the last time) it ever happened.  I grabbed some saline syringes right away and got to work with a new kit, but I just couldn't bring myself to keep pushing the new mickey into the hole in his gut once it became evident that I was hurting him.  I had visions that I was missing the hole in his stomach and we would be pushing chemo and other meds straight into his open abdomen.  Thank God for my beatiful neighbor Ginger who came here late on a Sunday night to help out instead of my novice attempt.  She has helped us access his medi-port before and she always has such a tender way with him.  He trusts her and remained very calm the entire time.  She is such a pro, and so caring.  She did such an amazing job, we didn't even have to go to the hospital.  This morning, while Ty was drinking milk, I attached a syringe and was able to see milk withdrawing from the new belly tube so I knew it was in the right place.  WHEW!   Another trip to the ER averted. 

The entire experience was more traumatic for us than for Ty.  He was more upset about going to bed than having to get his belly tube replaced.  That's why we call him SuperTy, right?? 

Hopefully tonight will have some sleep in the cards for me.  I am exhausted!

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