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 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.
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  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.

The New Plan PostOn November 12th, Shane completed his last treatment on the original protocol. The following Monday he was scheduled for a PET scan, but the scanner broke and we were rescheduled for Friday. This meant Shane had to be starved twice in one week. Through it all, he was smiling, walking and being his happy self.

Before the scan, we met with the doctors and went over his new protocol. Shane’s doctors consulted with a few radiologists and they all agreed it was a tumor on his pancreas. Even without the results from the PET we were moving forward with the new plan. It’s 9 weeks and then we re-scan to see where we are.

Yesterday we began the new treatment. It required an overnight stay. This plan is similar to last in that most of it can be done outpatient, with only one inpatient stay every 2 weeks.

The day was long. We started early, but inevitably his chemo did not start until after 1. The most difficult part of this new treatment is with one of the medicines. This one was new to everyone, even the nurses. Its been shown to be successful in relapse protocols for rhabdo over in Europe. When it is administered, Shane has to have his vitals checked every 15 minutes for the hour it transfuses and another hour afterwards. How are we going to make that work? Well, we did, even if it meant I hung out in a crib during that time.

Afterwards, Shane was strutting around, eating like a champ and pretending he didn’t have a bedtime. He eventually went to sleep and had a restful night. He woke this morning smiling and talking. He had an appetite and was his normal self. We were discharged first thing this morning since we do not have to wait for the shot 24 hours post chemo, but at 8 days post treatment.

The rest of the day, Shane did great. He ate well, didn’t require anti nausea meds and played like a kid his age should. For this, we are thankful. We are also thankful to spent another Thanksgiving with our little man and to be with our family to celebrate this.

We hope everyone has a wonderful Thanksgiving and is thankful for all the precious moments life grants you.

The Wind Before The Storm PostIt’s been almost a week since we had Shane’s MRI. A lot has happened and things about to change.
Unfortunately, the MRI showed a 1.3 cm nodule in his pancreas. All other organs are clear and the site of the primary mass has continued to shrink (mm’s). At the time of diagnosis, his pancreas was littered with tumors. Next week, Shane will undergo a ct and pet scan to check if it is cancerous, but the radiologist is certain it is recurrent. They will discuss his treatment options and decisions will be made in the next two weeks.
Clearly this was a big blow to all of us. Shane is doing so well and was responding to the chemo. A relapse….already, before the end of treatment?

The next day we drove to Boston to visit The Dana Farber Cancer Institue. If you remember, we had this trip planned in the beginning of September, but then Shane came down with his first ever fever. The mood had changed a bit, but the original anxiety I had was gone because nothing could be worse than what had just happened the day before and we were there for help, answers. The doctors spoke very eloquently to us about our situation and the reality we face. What is happening with Shane and this relapse is typical for his type of cancer. There just is not enough research or knowledge on it, like adult cancers. The doctor described this as the “wind before the storm.” There is no cure for his cancer, so we rely on treatments and hope that he will be able to maintain a good quality of life while doing so.

The biology of his cancer in combination with the type makes it even more difficult. He was stage 4 when the lumps were discovered because it’s so aggressive. It was caused by a fusion gene whose transcription factor is thought to drive the gene expression causing a worse prognosis. To a former researcher, it’s frustrating and clear to me.
The doctors don’t want us to lose hope, no matter what. They had suggestions for different chemo drugs and to enroll Shane in a immunotherapy program set to launch in February at CHOP. Finally, they want us to enjoy him and be grateful for how beautifully he has gotten through these past 7 months of treatment. That in itself is his miracle.

Paul and I did not have the time to truly process this news. We drove straight from Boston to Chase’s soccer game and have just been going ever since. We took time yesterday and today to work through things. My in laws took Chase and Ella down the shore to give us time with each other and Shane. A night to cry, drink, and cope. Today we took him to the zoo. It was a great day. He continues to not look sick- aka the Gerber baby.

I have to find a silver lining to all of this. I’m glad it happened now. He was not supposed to be re-scanned until January. This blow was huge, but if it happened then, I’m not sure I could pick myself up and move forward then. We would have been done with 42 weeks and then find out? How much bigger would the nodule have gotten, would there have been more? We have some time and we can do something.

We also need to live more. I want to take him to Disney and do whatever is going make him smile and shimmy. He is so full of life. It’s just heartbreaking.

Boston Bound Post

We had to wake him this morning. So cute, holding his favorite friend.

Today, Paul and I are sitting at CHOP waiting for Shane to wake up from a surprise MRI. I got the call Monday asking about sedation for an MRI before I even knew he was scheduled for one. Apparently the doctors felt it would be useful to have a recent scan since we are set to head to Boston (finally) for our second opinion trip. The doctors were very upfront with us in July that they would not be re-scanning him until January, so you can imagine our surprise. We have been assured that there is no cause for concern, just curiosity. Since Shane is now over one year, the rules for sedation have changed. Breast milk is now considered a solid, so he was not allowed any after 11 pm last night. This morning he refused water and juice…so stubborn. They were able to give him some “giggle juice,” which calmed him and he was wheeled off without tears. We will then head to clinic for his quick treatment. We are now at 32 weeks, only 10 more to go.

Round Three PostYesterday we finished week 31 and were home in time for some Halloween fun! We are now into Round 3 of our treatment schedule. The end is near and the thought is hopeful and frightening at the same time.

This week was long and at some points difficult. Shane had been off of treatment for 2 weeks (per his schedule) and then started the 5 day outpatient regime. His body took time to adjust to the chemo. He got sick a lot in the beginning- on the car ride down to CHOP and in clinic and then it eased up to only the car ride and then not at all by Thursday and Friday. Of course he was in good spirits and smiling, but also he slowed down a bit and just relaxed too.

He went trick or treating in clinic-yep that’s what cancer kids do. He had a blast getting treats in his pumpkin and kept going back for more. He joined his brother and sister last night as he strolled through the neighborhood holding his pumpkin. It was a good ending for a long week.

A Break! PostShane completed his inpatient treatment and enjoyed the holiday weekend down the shore. He enjoyed the carousel as you can tell from the pure joy on his face. About 5-9 days after this treatment he is neutropenic. We laid low from Monday on. On Wednesday he went to clinic to get blood work to see where his counts were. They were satisfied with his numbers, but asked us to return Friday to make sure they were rebounding and that he wouldn’t need a transfusion. The results are in and his ANC’s that were at 280 on Wednesday, went up to 10,698! He’s our little superhero! Now, we get a break until the 27th when we will start 5 days of outpatient treatment.

A Walk To Remember PostI am about a week behind! So, reverse to last Wednesday….

Shane did great today. He even slept in clinic, which is RARE!
His port access was a bit too dramatic for me though. Every time we head to CHOP, I need to take a tegaderm and add numbing cream to it so that Shane doesn’t feel the 3/4″ needle go into him to get his blood work, his chemo, etc. Chase is a huge help with this. He is the only person who can be with Shane while I do this and not have him cry. It’s really amazing.
Today, we had a nurse we don’t normally have and the needle didn’t go in right because there was no blood return. To see Shane scream and cry while this happens is gut wrenching. One of our usual nurses came in and made adjustments and everything worked out without having them re-access him again. Whew, we’ve been there, done that and it’s not pretty.
He received his treatment and his numbers were so good that we don’t have to come back to CHOP next week. Not even for blood work. A small victory in my book, at least.

On Friday, the TODAY show spotlighted some familiar faces to us from CHOP and premiered the music video for “Truly Brave.” Please, check it out:

I know the song is meant for fighters and survivors, but I told Chase & Ella it was for them too. They are fighters as well and need to endure much more than the average child their age. In fact, it saddens Paul & I that our children, family & friends are affected by what we are going through. We are so grateful for the many supporters in our lives.

Chase lit up when he recognized the child life specialist, nurses and of course the kids he has met. Last week before bed, he said (as I’ve heard before) I wish for the wishing spell. “If I had it I would wish for more wishes first. Then I would wish for my brother to not have cancer anymore. And I would wish for no more germs to make all those kids sick.” It made my heart burst with pride and then break with sadness. Every day since the video has premiered, they ask to hear or say it. It is harder for us (as we hide our tears and encourage their love of music), but isn’t that part of being a parent?

This brings me to what happened yesterday. The CHOP Parkway Walk & Run took place at 8:30 am yesterday in Center City Philadelphia. It was an amazing, emotional day. We had about 65 participants and raised $2000! For newbies, I thought we did a fantastic job. At times, being there was hard. I’d look around and wonder how we got here. They announced our team’s name as we walked by and played THAT song. At those moments, I was even more grateful for the beautiful weather and the face that I got to wear sunglasses.

We are so thankful to have such a great support network. We know it’s not easy to get up early and head into the city with 10,000 other people. Thank you for your efforts and for being there for us, for Shane.
From friends from high school Kristen Shiffer Strong, John & Patrick to college friends Katie Rembert, Alex, Jorja and Carter and friends that we need to see more often, Kerri Meder, (thank you to your brother too!), Mark, Matthew and Ryan, as well as our oldest and dearest friends and their families, Aimee, AJ, Declan, and Caeyln Bucci, Emily, Marc, Sadie, Nolan and Eliza Michaels, Scott, Shavon, Maddy and Ally Boxman, Dan, Karen, Maya and Owen Lafferty, Marc, Joanne and Evan Rubinsohn, Carole Budilov, Deborah and Bill Rubinsohn, Eric, Carly, Brooks, Ivy, Pierce and Joely Meyer, Molly Martin Farley and our lone runner… Christian Deussing! Then there is our family, who without their support, we would be nowhere. Thank you Paul (Bill) and Helene Metzgar, Tina Hunt, Gabe, Dana, Jackson, Ethan and Alex Lewullis, Dan Metzgar, Megan Gannon, Sue and Joe Gannon, Colleen Gannon, Bridget Gannon, Carmen J. Brancato, Julianna Brancato, Jelena Tarabocchia-Brancato, Eva Brancato, Giada Brancato and Vesna Tarabocchia. Heather Lantz Marozsan, MaryJean Hunt-Dixon, and Melissa Klipple Kieselowsky we missed you, and appreciate all your support!