It’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.

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.