Shane’s Future Days is a 501(c)(3) non-profit foundation whose mission is to raise awareness, research funds and assist families currently battling alveolar rhabdomyosarcoma and other high risk childhood cancers. EIN: 47-2556395 .
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.
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.