TODAY is our shopping for a cause at the Kendra Scott store in Ardmore.
We will be there from 12pm-2pm. Stop in or call in an order and mention Shane’s Future Days so that a proceed of the sales will go to childhood cancer research.
If you are local and call in an order, ask to have your purchase be sent home with me to save on shipping charges.
As a reminder of why we do what we do, I will repost a memory that I wrote November 11, 2014.
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. A special thank you to my good friends, Kris and Steph, who helped distract our sadness, brought us a care package and dinner while in Boston. We then 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.
I encourage you to share Shane’s page in order to raise more awareness. The whole reason there is no cure is because there isn’t enough research. Research requires funding. All of this can’t happen without making people aware of the serious underfunding of childhood cancers.
Wicked Cool Toys is hosting it’s 1st Annual Santa’s Workshop Charity Event!
‘Tis the season for giving back! Come support childrens’ charities (including US- Shane’s Future Days) and have holiday fun – all at a real toy company! More info: www.wickedcooltoys.com/SantasWorkshop2018
Admission: $20 per child (adults free!)
– One photo with Santa (hard copy and digital file)
– A free toy ($10-$20 value). Choose from Pokemon, Cabbage Patch Kids and more!
– Holiday activities and crafts
– Raffle ticket – win prizes!
– Light refreshments and more!
Shane’s Honor Video for the Children’s Cancer Therapy Development Institute
This is WHY we do what we do!
This is a gift card drive for the families under the care of
The Children’s Hospital of Philadelphia’s PACT team.
Many of you have reached out to us during past holiday seasons and have helped.
We are assisting specific families again this year, but it’s too difficult to list those items and have people purchase them because in my opinion there needs to be a quick turnaround of gifts. Everyone’s situation is different when under the PACT team’s care, however all of these families are under their care because their child’s diagnosis is untreatable.
Time is important.
This is why we thought the gift card drive would be an amazing way for our supporters who want to participate in helping childhood cancer families during the holiday season. The PACT team heavily relies on the donations of gift cards to assist these families.
These families are either inpatient or outpatient. There are siblings to the sick children and bereaved children too.
These gift cards would ease the burden to the parents who are primarily focused on the well being of their sick child, as well as maintaining normalcy to their siblings. It’s difficult to go out and shop when you are caring for a sick child. No parent wants to leave their side. These gift cards will be so helpful.
Suggested gift cards would be: amazon, google play, xbox, netflix, Giant, Whole Foods, Starbucks, Target, children’s clothing stores (ages of children infant to teenager).
Please: no restaurants unless they are specific to the University City area or iTunes gift cards as there is abundance of these at CHOP for patients.
Gift cards can be mailed to :
Shane’s Future Days
P.O. Box 168
Abington, PA 19001
Come shop at Kendra Scott Ardmore from 12-2 with some sips and sweets!
20% of the sales will go to Shane’s Future Days!
The holidays are coming and this is a perfect way to get yourself or someone you love a beautiful piece of jewelry all while giving back to help fight childhood cancer in Shane’s memory.
We will have a special piece in honor of Shane in the color of his birthstone, Ruby. It will make a special gift during the holiday season and also give back to childhood cancer research.
If you are out of town and wish to participate, please email us at: email@example.com
It’s now officially October. While things are turning pink, we continue to fight for GOLD to be more seen and heard.
#SFD #HelpShaneFightCancer #ARMSaware #letsdobetter
Today is the last day of childhood cancer awareness month. As you know, it’s everyday for our family and so many other families across the globe. We don’t need a designated month to know how unfair a childhood cancer diagnosis can be.
On Tuesday, March 24, 2014, Shane was sedated for the first of many times, to undergo an MRI. Paul and I weren’t completely convinced that Shane had cancer at this point. We were not allowed to be with Shane during the MRI, just a kiss good-bye as he was wheeled away under the influence of versed so he could tolerate the test.
During that time, I met with the urologist. More blood tests were ordered and I wanted to know the outcome. Everything was clean. No changes, no other indicators of disease. We both discussed it and I had convinced myself that he was suffering from an autoimmune disease since they can be unique and difficult to diagnose.
I returned before Shane came back and shared the conversation I had with the doctor to Paul. We left the hospital in high spirits.
At 4 p.m. my cell phone rang. Paul answered it. He answered all the horrible calls. The ones telling us news we couldn’t stand to hear. He looked like someone punched him the face. He repeated the words the doctor told him on the phone. I lost it. I don’t think I’ve ever been so out of control of my own self. I’m not even sure I remember how I came down from that moment.
The next day we arrived in the surgical center waiting room. Shane was scheduled for a biopsy to confirm his type of cancer.
My baby had cancer.
We sat in a waiting room filled with circular tables with chairs. We sat and waited until the woman in charge came to update us on Shane and his procedure.
He was in recovery. The doctor wanted to talk with us. They biopsied the lymph node, etc. It came up blue. It was in fact cancer.
We spent our first night on the oncology floor that night as Shane recovered from his procedure. It was my first of many nights there by myself without my family. The first of many nights where others had to prepare Chase and Ella for school. putting them to bed, waking them up, preparing breakfast, making their lunch, etc.
So, yes when your child is diagnosed with cancer, it affects your whole family. It changes everything.
*Note: Any missing dates for the month of September are posted on our FB page: https://www.facebook.com/HelpShaneFightCancer/
We had three hours to sit and mull over the fact that we were headed to oncology about our almost 8 month old baby.
We went to lunch on UPenn’s campus. I used to work across the street and had been to the same place many times. Before we were married, while I was pregnant and every moment of our lives in between. I never thought I’d be sitting there under these circumstances.
We went to the oncology floor and waited to see the doctor. My eyes steadied on Shane. My head thought, “we don’t belong here.”
I knew the doctor. I had worked across the hall from him at my former job. He examined Shane and firmly said that Shane had some type cancer. We needed a biopsy to be sure. It was to be scheduled the following week.
The fact he said it was a cancer didn’t set in right away. We went to the desk to schedule our appointment. The receptionist said that they wanted us to have an MRI before the biopsy.
I looked at her and said they never told us that and she just looked at Shane and me and said “I’m so very sorry.”
We headed to urology to meet with the doctor. Upon examining Shane and looking over initial blood work, he was discharged with enlarged lymph nodes. The mass wasn’t discussed. It was considered a site of inflammation.
Shane had never been sick. No fever, nothing. The doctor said he looked perfectly healthy….like the “gerber baby.” The beginning of Shane’s everlasting nickname at CHOP.
We were to return within a week to see if there had been any changes in the size of the lymph nodes.
We returned (March 19th) and there was no change. The doctor seemed perplexed and wanted to send us to infectious disease for more opinions.
We met with the doctor and Shane was examined. He was prescribed an antibiotic. Within a day, the lumps appeared to double in size. Whether this was scientifically true, I can’t attest, however through visual eye/photos it looks as though they did.
We returned to CHOP on March 21st. It was a Friday. I always remember things were told to us on Fridays. We were then left to digest scary, anxiety causing news for the next three days, unable to do a damn thing about it, but try and keep ourselves sane.
We met with the infectious disease doctor and she discussed further testing, but Paul spoke up and said what if this is something more serious, like lymphoma. At the time, that was really the only serious disease we knew of.
An appointment was made with oncology. We had to wait three hours.
Shane was diagnosed at 8 months. He lived until 19 months old. Obviously he was not potty trained.
So, we wore gloves to change his diapers.
Our parents wore gloves when they thankfully watched him so we could breathe or be with Chase and Ella.
When he went through his first chemo treatment, he threw up on me. The nurse looked at me and said “I strongly suggest you change your clothes and jump in the shower if you can.”