On 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.

It’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.

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.

Yesterday 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.

Shane 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.

I 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!

Shane finished his five day outpatient this week with little to no problems. He looked and acted much better this time around then last, but there had been more time between the last time we did this. He’s mobile now, which makes him having lines and a pole much more challenging. We kept pace with him as he made the rounds in clinic. He’s always nosy and trying to meet new people. You’ve got to love his upbeat personality and smiling face even while gong through so much. He got sick a few times, but mostly it’s in relation to taking medication. He overcame it both times and was eating normally within the hours that it happened. We have a big weekend coming up. The CHOP parkway walk is next Sunday. We raised $480 from our t-shirt fundraiser to be donated to CHOP. We were thrilled with the success of it all. We look forward to being apart of such a wonderful event.

Last week was a good week. It was his easy treatment week and his numbers came back up. The doctors were glad to see him back to his usual self. This week we started the five day treatments. Today we clocked 5 hours at CHOP. His numbers were great and he was a social butterfly, which gained him some chocolate ice cream. Shane also slept for an hour and this NEVER happens. It was a long, but good day. Shane got sick at home, but he ate right away and had a good night catching up with his family. Only four more days to go!

The good news is we get out of CHOP today, the bad news is we have been here since Wednesday night. We took Shane to clinic on Wednesday for his routine easy treatment. He was not his usual nosy, mobile self, instead he chose to nap on PopPop. His counts were OK, with only some concern over his platelet count. We were asked to come back Friday to get a transfusion. It was a long day in clinic because they were crazy busy after the holiday weekend. We got home, played and then Shane went down for a nap. When Paul got home from work, we woke him up and he was HOT. His temperature ranged from 102-104 and in cancer patients 101.4 is ER worthy. While we have been fortunate to never have a fever (ever), the timing couldn’t be worse. We were leaving that night to get a second opinion up in Boston. There is a rhabdo specialist up there and we had some questions concerning treatment options. Oh well, life happens and we have to be sure he is OK. We head down to CHOP and they test to see if he has a blood infection from his port. In the meantime, his counts have almost doubled since clinic, so it looked like it would be a quick one night stay. Eh, unfortunately he maintained a fever, which depleted his numbers and we were staying until they rebounded. By yesterday they lowered a little, but didn’t plummet like the docs expected. He looked better, but was still staying. He got a platelet transfusion, which caused a high fever and whole body shakes- an allergic reaction. So, here we are day 3 and finally we can go home. His numbers are up and now we just need to wait for our release. According to the doctor, we have led a “blessed chemotherapy life” having not to experience this until week 23. Honestly, I will be praying we make it through the fall/winter without another trip like this. It was hard, unexpected and frustrating. Shane definitely does so much better at home, who doesn’t? We’ll be back here Wednesday for the same treatment, thankfully it doesn’t affect his numbers. This was probably caused from the overnight chemo treatment and maybe a viral infection on top.

This is our family celebrating September 1, 2014. Today is not only Labor Day, but it is the start to childhood cancer awareness month. This time last year I would have had no idea about it either. It’s like they say, you never think it will happen to you and then it does. We join millions of families in this emotional journey. We fight for our children as they become littles heroes, warriors. We hold them as they endure their sedations, surgeries, biopsies, chemo, and for some radiation. They are still little and young and may not feel as those their voices are being heard. That is why we have to help them find their voice, be their voice and draw attention to their cause. That little guy in the picture is our Shane Metzgar. He was 8 months old when diagnosed with stage 4 Alveolar rhabdomyosarcoma or rhabdo or ARMS for short. It is a vicious beast and was caused by a gene translocation. We have no idea when the tumor started, but it doubled in size from it’s initial discovery to his diagnosis. Shane’s diagnosis was a grim day- March 28, 2014. No one ever wants to hear their child has cancer, but you most definitely don’t want to hear “we were afraid it was this cancer,” poor prognosis, and only 1 in 10 survive. You see, rhabdo is treatable, but it comes back. We are determined to remain hopeful and positive. We live each day for him and keeping our family whole. Some days are easier than others. We take one day at a time and can’t make plans like we used to because everything is pretty much dictated by his treatment schedule and how he is feeling. Some people get it, some don’t. We are just trying to be normal, but real in our situation. My husband and I look at each other and say “I can’t believe we are going through this.” We both then add “everyday until we beat it.” So, even though we are still considered new to the journey we are in it forever. Cancer messed with the wrong family. We are determined to create something that will be a lasting. We still need time to sort that out. In the meantime, we encourage everyone to take a stand and spread the word about childhood cancer- the least funded cancer research by the government. We appreciate all the support you have given us. If you are on Facebook and are inclined to, please “like” and “share” Shane’s page to help raise awareness. www.facebook.com/HelpShaneFightCancer #HelpShaneFightCancer