Day 8: Community

Paul is a PSU alum and I can tell you that as long as I’ve known him, he has ALWAYS stopped and given to the PSU student canners.

This was before we personally knew the reality of childhood cancer.

In March 2015, we were asked to speak at what will be our children’s high school for their ASHS Mini-THON. Shane was just beginning to decline and passed two weeks after attending this event.
We felt it was important for us to tell a little about his story and more importantly to thank these students for all their efforts in raising awareness and funding for childhood cancer.

These students continue to amaze and inspire us.
Two rivals, Cheltenham and Abington will come together in honor of Childhood Cancer Awareness Month. We are honored to attend and be one of the beneficiaries of the football game tomorrow, Friday September 9th, along with Sara’s Smiles, Team Nate for the Parkway Run, CURE Childhood Cancer and the Four Diamonds Fund!

Paul is a Cheltenham alum and his parents still reside in Cheltenham. We live in Abington and Chase and Ella attend McKinley Elementary. Our family is tied to both of these communities.

 

Today, I got by “with a little help from my friends.”

It’s Back to School day for Chase and Ella.
It’s a difficult day on many levels.
First, Ella entered Kindergarten.
This alone saddens me.
Where have the years gone when my little shadow was playing school and trying to read over her brother’s shoulder?

Then there is the reminder that Shane WOULD have been entering Pre-K.
He would have followed in his sibling’s footsteps and gone to the same, wonderful preschool and perhaps have had the same teachers. This alone is enough to rip my heart in two.

I thought about this notion on Monday. Ella mentioned it yesterday, stating that she was going to Kindergarten and “Shaney” was headed to Pre-K. How we wish, right?

I thought about the Back to School pictures and when Ella returned with her badge, I made one of my own. It’s the reality and the truth. Today, was beyond difficult. I am thankful for those who helped distract me.

But, Shane is always there….
Paul and I walked the kids to the bus stop and walked home hand-in-hand. As we went up the driveway, a brilliant cardinal flew across our path.

 

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I’ve been seeing this over the last couple days and it brought me back.
This was us with Shane during his entire treatment. We had gloves in our diaper bag, at my in-laws, in his room…everywhere.

As I mentioned before, we were incredibly blessed that Shane took to his chemo treatments so well. He did get sick maybe a handful of times, but nothing like some kids get. You know, the ones who have parents carrying puke bags or buckets around with them as they stroll the halls getting their treatments.
Anyway, he just started his first chemo. It was overnight and the next day he puked all over me. The nurse on duty looked horrified and said: “you will want to change your clothes now.” I said, “Seriously?” She turned and nodded and then added, “Maybe even shower, if you can.”

Another memory that came back was when Shane went home with Etoposide. This was his at-home chemo and our last treatment option.
When we began, I asked the doctors about proper usage, like designating an area in our house where I would draw it up and administer it. Then I asked how to properly dispose of the syringe. They told me no one had ever asked that before. A lot of people carry this type of chemo in their purses(!).
Given my background, I decided to designate an area in his room. I had gloves, tubs, chucks (absorbent pads from the hospital) and  used an empty laundry container to dispose of the syringes. The chemo (in liquid form) was stored in a tub, along with the laundry container high on a shelf in his closet so that his siblings never touched or got near any of it.

It’s heartbreaking. I remember how stressful this was. I would lay awake at night wondering if I remembered to clean up properly. I would check and re-check the containers to make sure there were no spills.
You do whatever it takes if it will save your child.

Even though Shane’s life ended before it began, he is a hero. He fought just as hard as those who survived.
He has left his mark on us and others touched by his gentle spirit.

We continue his fight and for children like him. Someday his cancer will have more options, better treatments and better survival rates. Sometimes it takes the collaborate effort of parents like us to make a difference. That’s what we are fighting for now.

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On 9/1/16 , our child life therapist from CHOP’s PACT team came over for a visit. The kids completed craft projects to celebrate Shane and childhood cancer awareness month. During this time, Chase and Ella can safely talk about their feelings of Shane and cancer in general. Kelly has been with them since December 2014 after I asked for help in preparing them for the inevitable.

In that time, she has taught them about their feelings and emotions and how to control them and more importantly that it’s OK for them to have various feelings. 

Kelly went to Chase’s school after Shane passed and did a project with him and his classmates. Her team also held a separate meeting for parents on how to talk to their kids if they had any questions about what happened to our family. She supports Chase’s lemonade stand endeavors, as does her family. She is always just a phone call away if we have questions or need suggestions on how to help Chase or Ella sort through any situation.

We are incredible thankful for her and all she does for our family and other families like ours. To us, this is an important facet of the PACT team who supports families when their children go home on hospice.

Shane’s Future Days was proud to present Kelly’s psychosocial team with $2,000 again this year to continue their efforts to help families in similar situations.

Day 2:

Last year I approached September as a cleansing of thoughts in terms of our cancer journey with Shane. There are certain topics as we move forward that come to mind. These will come in time within the month. Some are difficult and others uplifting.

Heading into the holiday weekend, I will begin with this: 
Everyone’s experience with cancer is different. Some stories have happy endings and others not so happy. People may look at our story as sad. It is. We are incredibly proud of our efforts to move forward and continue to keep Shane with us. 

Death is not an easy topic for many. I see the look in people’s faces, new and close, when I mention his name or our situation. This is apart of us.

It’s important for us to speak of him and for our children to be comfortable to mention their brother, Shane.
Studies have shown that the traumatic loss of a sibling can lead to many difficulties in adulthood in terms of physical and mental health. The stats are unnerving.

I was given some great advice from an old friend who unknown to me went through this journey with her sibling. It was a gift to have this advice and I can’t truly ever express how much it meant to me.

I will never forget our clinic visit the first time after we returned from Boston. Everyone at CHOP had been briefed on our meeting. They knew, we really KNEW the reality of our situation and the outcome for Shane. Our social worker approached me with care and asked what we needed. I replied: “I need help preparing Chase and Ella.”

Paul and I share the common goal in life to make sure that our children come first. They are our everything. All the practices, school work and their interests in general are our main priority.
I mean isn’t that why you choose to be parents?

September is

Our goal as parents are not only to raise kind and loving children, but for them to realize the world is bigger than themselves.

Chase wanted to do an Alex’s Lemonade Stand ever since Shane was diagnosed. Last year, he successfully raised over $1400.

He enjoyed doing it so much, he committed to doing it again this year.

On Saturday, August 13th, he held a stand in memory of Shane and our friend Antonio. He wants the money to go to CHOP (The Children’s Hospital of Philadelphia) for sarcoma research. Shane and Antonio both had a sarcoma cancer and like us, he realizes the importance of research.

He is proud to tell you that he raised: $523.65 and along with his online donations, the total is $1,548.65!

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On Thursday, August 4, 2016, we donated the money raised from our Pearl Jam #tailgate4good with the Phan Cave to Dana Farber Cancer Center. The money will go towards their genetic research of rhabdomyosarcoma in memory of Baby Shane.

A lot of memories came rushing back as we pulled into the parking garage. It was there, that we came to the realization that not much more could be done for Shane in terms of treatment options. We appreciated all that was said during our meeting. It was very helpful to us as we moved forward in our journey. It was important to us to relay that back to them.

The check presentation was held outside of the Jimmy Fund oncology clinic. Sadly, the clinic was full of children. It was a difficult moment for us. However, this is why we do all of this. Without money for research, these clinics will always be filled. In terms of certain types of cancers, it’s almost up to the parents to go out and seek funding for better treatment options in hopes of a cure.

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In continuing with our efforts to support the Children’s Cancer Therapy Development Institute, we are proud to announce that we will be donating $10,000 towards their ARMS research project.

Paul and I will not be able to attend the pediatric nano course this year. We hope to travel out to their new facilitates in Portland, OR next year with the children.

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