Join us for Phan Cave’s inaugural Opening Day Tailgate! We’re going to have local beer sponsors, food, a DJ, face painting station for the kids, tailgate games, plus “Wild Thing” Mitch Williams will make an appearance to take pictures and sign autographs!

Tickets are just $35 and you can get them here: http://phan-cave.ticketleap.com/phancaveod/details

Sponsors include: Phillies Nation, Philly PR Girl, Straub Beer,Conshohocken Italian Bakery and more to come!

We are honored to raise funds to Help Shane Fight Cancer and are excited to announce funds from ticket sales, proceeds from silent auctions and day of tailgate events will be donated to The Shane’s Future Days Foundation.

 

 

The page has been quiet. I know a lot of you have been contacting us and checking in to make sure everything is going OK. We appreciate your thoughtfulness. The truth is, Shane’s not doing well. We haven’t posted in a bit because we were letting all of this soak in. We took our memory trip at the best time, and honestly the only time. If you asked me how I would envision the difference in Shane’s health during the week in Disney, compared to the following week, I never would have thought so much would change. On March 6th, we made our last trip to the oncology clinic at CHOP. The current chemo was not working. Shane was scheduled to be on the chemo for 21 days and then off for 5 and so on. While on it, three new tumors appeared, as the already present tumors continued to grow. We went to clinic to discuss our options, but Paul and I knew we were out of options. The doctors agreed that the chemo wasn’t working. Unfortunately, there were no other treatment options left for Shane at CHOP. Our ties with CHOP will continue as he is now under the care of their Pediatric Advanced Care Team (PACT) and home hospice. As we said before, we will be forever tied to CHOP. We wouldn’t have made it this far in our journey without their guidance. The nurses, doctors, social workers and child life specialists are some of the most amazing people I will ever meet. Read More

Philadelphia Phillies Opening Day Tailgate PostWe are incredibly honored to have Shane’s Future Days be chosen as the Phan Cave’s benefit charity for their Phillies Opening Day tailgate with Phillies Nation and Philly PR Girl! We hope to see you there! For more information you can contact us or head over to the Phan Cave’s facebook page.

A Magical Memory PostThe 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

Radiation And Then Some PostWe 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.

Shane's Future Days PostAs 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

Happy New Year PostGoodbye 2014! On December 31st, we were supposed to celebrate the end of our journey with Shane’s last chemo. Whether we would have rung a bell or thrown a party, it doesn’t matter. The celebration would have been short lived and we would have had to pick ourselves up higher than we have in the recent past. We cheers to the end of the hardest year of our lives. We have hard feelings, but as always you must find the positives.

We have ourselves a little fighter. Shane was not expected to make it this far. The doctors are constantly amazed at his progress. For his strength, we are thankful. My husband and I are a solid team. Who says you can’t meet your soulmate in a bar? Chase and Ella are braver than they ever knew they could be. Through this all, we have maintained their lives as best as we could.

We are blessed with supportive family and amazing friends-new and old-who are by our side every step of the way. While 2014 was not as we expected, we have learned a lot about ourselves…our strengths, what pure joy and happiness is and above all to be thankful for each and every day. To all those fighters out there, we are lucky to know you…to share the ups and downs and to find support in one another.

Happy New Year to you all and thank you from the bottom of our hearts for all your love and support along the way.
Love,
The Metzgars

Merry Christmas PostIt’s been awhile since I’ve posted and I apologize, it’s been a crazy month. If you are on Facebook and would like to follow Shane’s progress more closely, please “like” and “share” his page to raise awareness at https://www.facebook.com/HelpShaneFightCancer.  It has been a more user friendly medium to post updates recently since this month has been a whirlwind.

The Ups and Downs….

After our trip to the ER, we went to clinic on Wednesday. Shane’s attending oncologist had felt the lump on Wednesday and told us it didn’t change much in size. Yep, I had some mixed emotions about this statement, but regardless it is a bit of relief that a tumor didn’t just grow in days and it matches with the scan. Another decent piece of news for the day, the chemo needs time to kick in. It would be too early for us to assume this new protocol is not working. Therefore, we went ahead with that week’s treatment as scheduled.

It was a long day, as this new drug caused issues again. The day hospital nurses were more familiar with it and the time limits and vital signs were lessened. Shane sleep through most of the a day, thanks to Benadryl. He again did not need any anti nausea meds afterwards. He was battling a cold, but loved to wipe his nose. He continued to dance, laugh and play.

On the morning of the 6th, we went back to the ER because Shane was had a seriously high fever. He was diagnosed with RSV and was neutrapenic. We did not go home until Monday, the 8th. On Wednesday, we found out his ANC’s have rebounded and the mass had shrunk. It seems as though the new treatment is working and he was in a good place. He received his treatment, again with no major issues.

We delayed his next treatment until this past Monday. It was an inpatient stay. We did this so that his lowest day after treatment would not fall on Christmas and we could celebrate with our family. Shane did great. He again has a runny nose afterwards and we hope that he will be able to fight it off before his ANCs plummet. We will return to clinic on Monday for his next treatment.

We would like to wish all of you the happiest of holidays and all the best for the New Year. Thank you for all the support you have shown our family and for rallying behind our little guy. He is a fighter and will will fight with him as long as we can.
One day at a time. One foot in front of the other. Enjoying every moment of everyday. It’s the only way we know how.

My heart is heavy this morning. Paul and I took Shane to the ER last night. Our initial worry last evening was his fluctuating low grade fever as we were day 6 post treatment where his numbers begin dropping making him susceptible to infection. I decided to give him bath and as he was sitting up, a large lump became noticeable below his neck. Last night an ultrasound confirmed it to be a mass. His PET scan on 11/21 lit up not just in his pancreas, but “slightly” in his sternum and tibia. I don’t know what the plan is. He is acting and being himself, so it is not interfering with his breathing, etc.. We’re doing everything we’re supposed to do and will continue to do so. To say we are worried, scared, sad is an understatement. There are so many things we have yet to do….these thoughts are so overwhelming.