The last time I updated everyone, Shane was scheduled for his g tube surgery so we could administer chemo at home.He has since had the surgery (2/9) and finished up radiation (2/10). According to the radiation oncologist, Shane had met his threshold and while we were scheduled to have 5 more sessions, it was up to us to continue and we chose not to.

We celebrated my daughter’s 4th birthday at CHOP while Shane underwent his final round of radiation. To her, the hospital is a magical place where people spoil you and they did just that. We were incredibly thankful to CHOP and their child life services for making her feel special, even under difficult circumstances.

In the week that followed surgery, Shane seemed to suffer from PTSD. He was not himself and was extremely clingy. The starvation factor in being sedated upset him greatly and it was an adjustment for him to realize it was over.

As soon as we had Shane’s radiation schedule, we booked a trip to Walt Disney World.

I am pleased to tell you that we returned from our trip this week. It was magical, memorable and enjoyable for our whole family. It was important to us to have memories with Shane outside of cancer and the hospital. We feel as though we have done a great job of balancing life for us and our children among all of this, but we had yet to take a family vacation. Disney seemed to be the perfect place to make those memories.

There are many people to thank…..

• The “We are Family” Dragon Boat Team
• The members of the Facebook group Hope and Smiles for Shane
• Michele for all her generosity and assistance in helping us plan our trip
• Heather and Meredith-two of my childhood friends who contacted Walt Disney World and their guest experience services agent arranged for special surprises for us
• The Alexa Nawrocki Pediatric Cancer Foundation

We would first to thank you all for your well wishes, prayers and motivation. Last week was rough. Like all new roads on this journey, there is an adjustment period. There are times that are so hard. I can now look back and be amazed that we got through some of those roads. Those experiences help us on new ones, knowing that eventually things will get better. This is what we went through last week. Shane had a lot of adjusting to do (some of which is still hard, but more manageable). By Thursday he had adjusted to waking up and not nursing, got used to sedation and was eating a bit more. He was battling a viral infection which caused a cough that led to vomiting and gagging. Thankfully, none of this was related to his therapy. Read More

I wish we had better news. Shane’s cancer continues to grow in his pancreas and now has spread to his brain. This was a shock to all of us, but this is the nature of the beast we are dealing with. Shane is getting a CT scan and will start radiation next week to slow and hopefully stops the spread. We were were given a prognosis of weeks. We are hoping to turn the weeks into months. It hurts, but its not unexpected. Everyone is doing everything in their power to fight this. Unfortunately, there isn’t a cure for the rare cancer that he has. We continue to fight. Giving up is not an option for us, and definitely not for him.

As we move into the new year, we wanted to take the time to thank all of you for your support through these tough times. The love and support that we’ve received from all of you, has been incredible. We are truly blessed. Thoughts and prayers gets us through each and every day.

Shane is a fighter. He’s been amazing through the process and continues to be. His chemo changed and little man just rolls with the punches. He brings so much happiness to us. Whether he is here with us for the year, 5 years or 80 years, we cherish every moment with him.  No child should ever have to go through what he’s going through. And he does, with a big smile on his face.

We are taking the steps to create a foundation in Shane’s name called Shane’s Future Days. The foundation is all about looking forward, looking towards the future. Going through this journey, without hope, you are left with nothing. We know the odds, but giving up is not in our DNA and certainly not in Shane’s. The foundation is going to focus on raising funds for rhabdomyosarcoma research, building awareness through various fundraisers, and giving back to families going through what we are going through. We’ve met so many amazing people, families and organizations along the way that have reached out to us. We can’t wait to give back. Paying it forward is in our DNA.

Setting up a foundation is a long process. This is the start. Our EIN# is  47-2556395 – Shanes Future Days. All donations for 2014 and going forward are tax deductible. We are in the planning stages for various fundraisers throughout 2015 and beyond. There will be more information to follow.

You can also follow us on facebook at https://www.facebook.com/HelpShaneFightCancer. Again, we wanted to say thank you to everyone. We wish everyone a happy and healthy 2015. We’ll be in touch.
Love, The Metzgars