Paul explained at our second annual Celebration of Life where exactly the money we raised goes. Here is the speech he gave:

I wanted to give an update as to what we have been up to and where the money raised goes from our events. I always think that’s important.
 From last year event, we raised close to $10k. Our foundation matched the amount raised and we donated $20k to Children’s Cancer Therapy Development Institute (www.cc-tdi.org).
 This past August (8/2015) we attended a nanocourse at the CCTDI lab in Fort Collins, CO. We learned about the process and pitfalls of pre-clinical trials, the cost and red tape of taking a drug to market, and the importance of cell tumor donations. We also met Dr. Keller and the team at CCTDI. This is the lab where we donated Shane’s tumors.
 This year the lab was able to create Shane mice by injecting his tumor cells into mice. From these tumors cells, there were able create new vibrant cell lines of Shane’s cancer. These cell line will be used to test various drug therapies. The cell lines previously studied were from the 1960’s.IMG_6394
 We donated $2k to the Pallative Care team at the Children’s Hospital of Philadelphia, the PACT team, which is the life service group that works with kids in hospice. They continue to provide support. The PACT team is on a tight budget. The $2k was used for supplies and a new computer.
 This past Christmas we adopted two families for the holidays, and purchased gifts for the entire family. We even bought all the decorations for one of the families, because her life was spent at the hospital with her daughter. While it may seem like a small gesture, if it can create a moment of happiness and a smile, then it’s all worth it. When you are going through something like this, you are grasping for anything that resembles happiness. We hope to build upon this and increase the number of families.
This was extremely important to us. During our journey, we had various groups reach out to us at Christmas. They wanted to buy for everyone in the family. Michele and I told them to take our gifts and give them to another family. But they were persistent. So I said Arsenal gear. What did I get, but my most prized possession, Shane’s Arsenal hat, the only hat he would ever wear. He even gave me an earful for wearing his hat, when I was shoveling.
Last month we posted as to why we named our foundation Shane’s Future Days. There was a major detail that I left out. Future Days is a Pearl Jam song, the last track on the CD Lightning Bolt. We listened to LB on our way to and from clinic. On a night after Shane’s Wednesday treatment, Michele, Shane and I were having dinner at a restaurant. There’s music playing it background, and what comes on mid-meal? It was “Future Days.” First, the piano plays, then the line “if I ever were to lose you, I’d surely lose myself”. Michele and I started uncontrollably sobbing. Neither of us could stop. It was like the damn burst, all of this pent up sadness came flowing out.
Shane is sitting on Michele’s lap. So what does he do? Does he comfort us? Not this time. While we are both sobbing, Shane took the opportunity to grab Michele’s beer glass. We stopped and looked at him and he started belly laughing. And our uncontrollable sobbing turning into uncontrollable laughter. This was classic Shane. Shane always knew how to make a situation better. He made everything better. A true inspiration for us.
At that very moment, we were so sure Shane was going to beat this. And looking back, he did beat it. He lived every day with a smile, fighting one of the most aggressive forms of cancers around. Now, we move forward with his strength and determination to make difference. For us the song, Future Days, became an anthem of hope.
I heard this quote about tragedy last month. In dealing with tragedy, “you can’t get around it, you don’t go under it, can’t go over it, you have to go through it.” Events like this are part of our healing process, of getting through this tragedy, spending time with family and friends and raising money for cancer research. We hope, that over time, our contributions will go towards helping to save Future kids diagnosed with Shane’s cancer. This is Shane’s foundation. We are all his voice.

In our family, we celebrate birthday weeks.
Monday, Jully 11th, was Shane’s 3rd birthday. Chase and Ella did a wonderful job planning our day.
It was full of soccer, the zoo, cake and a sunset balloon release. It was busy, which is how we like it. The rest of the week was full of soccer and friends. It ended with a family trip down the beach. The whole Metzgar family was together in Shane’s favorite place.

I wish I could say it gets easier, but really it doesn’t. The feelings get softer, but the pain runs deep. Paul and I listen as Chase and Ella converse. Their conversations are ones that at their age, we never had. We either weren’t exposed to the reality of death or weren’t mature enough to emotionally handle it. These two are truly wise beyond their years. 

Thank you for all the warm wishes to Shane and our family. We truly appreciate you remembering our sweet little man!

Side note: I grabbed three candles to light Shane’s cake. Yellow, red and green. We sang “Happy Birthday” and after blowing them out, one candle re-lit. It was green, Shane’s favorite color.
Out of a pack of 28, only 8 were re-lighting. The kids got a kick out of it.IMG_9607

IMG_9583 IMG_9598

Rhabdomyosarcoma is a rare cancer that forms in the body’s soft tissues, such as muscle and connective tissue. In rhabdomyosarcoma, the cancer cells look similar to immature muscle cells. Rhabdomyosarcoma can occur at any age, but it most often affects children and young adults. Rhabdomyosarcoma most commonly forms in the:

  • Head and neck
  • Bladder
  • Vagina
  • Prostate
  • Testes
  • Arms
  • Legs

Where rhabdomyosarcoma begins and the characteristics of the cells involved in the cancer helps determine your treatment options. Treatment options for rhabdomyosarcoma include chemotherapy, surgery and radiation therapy. [1]

There are two main types of pediatric rhabdomyosarcoma: embryonal rhabdomyosarcoma and alveolar rhabdomyosarcoma.

  • Embryonal rhabdomyosarcoma (ERMS) occurs most often in children under 10 years old and is found in the head, neck, urinary tract, or reproductive organs. It is the most common type.
  • Alveolar rhabdomyosarcoma (ARMS) is more aggressive, occurs more commonly in teens or young adults, and usually starts in the torso, arms, or legs.

Rhabdomyosarcoma is the most common soft tissue cancer in children, with approximately 350 new cases each year in the United States. [2]

Signs and Treatments

A sign of childhood rhabdomyosarcoma is a lump or swelling that keeps getting bigger.

Signs and symptoms may be caused by childhood rhabdomyosarcoma or by other conditions. The signs and symptoms that occur depend on where the cancer forms. Check with your child’s doctor if your child has any of the following:

  • A lump or swelling that keeps getting bigger or does not go away. It may be painful.
  • Bulging of the eye.
  • Headache.
  • Trouble urinating or having bowel movements.
  • Blood in the urine.
  • Bleeding in the nose, throat, vagina, or rectum.

 

Diagnostic tests and a biopsy are used to detect (find) and diagnose childhood rhabdomyosarcoma.

The following tests and procedures may be used:

  • Physical exam and history : An exam of the body to check general signs of health, including checking for signs of disease, such as lumps or anything else that seems unusual. A history of the patient’s health habits and past illnesses and treatments will also be taken.
  • X-ray : An x-ray of the organs and bones inside the body, such as the chest. An x-ray is a type of energy beam that can go through the body and onto film, making a picture of areas inside the body.
  • CT scan (CAT scan): A procedure that makes a series of detailed pictures of areas inside the body, such as the abdomen or pelvis, taken from different angles. The pictures are made by a computer linked to an x-ray machine. A dye may be injected into a vein or swallowed to help the organs or tissues show up more clearly. This procedure is also called computed tomography, computerized tomography, or computerized axial tomography.
  • MRI (magnetic resonance imaging): A procedure that uses a magnet, radio waves, and a computer to make a series of detailed pictures of areas inside the body. This procedure is also called nuclear magnetic resonance imaging (NMRI).
  • Bone scan : A procedure to check if there are rapidly dividing cells, such as cancer cells, in the bone. A very small amount of radioactive material is injected into a vein and travels through the bloodstream. The radioactive material collects in the bones and is detected by a scanner.
  • Bone marrow aspiration and biopsy : The removal of bone marrow, blood, and a small piece of bone by inserting a hollow needle into the hipbone. Samples are removed from both hipbones. Apathologist views the bone marrow, blood, and bone under a microscope to look for signs of cancer.
  • Lumbar puncture : A procedure used to collect cerebrospinal fluid (CSF) from the spinal columnto check for cancer cells. This is done by placing a needle between two bones in the spine and into the spinal column to remove a sample of CSF. This procedure is also called an LP or spinal tap.

If these tests show there may be a rhabdomyosarcoma, a biopsy is done. A biopsy is the removal of cells or tissues so they can be viewed under a microscope by a pathologist to check for signs of cancer. Because treatment depends on the type of rhabdomyosarcoma, biopsy samples should be checked by a pathologist who has experience in diagnosing rhabdomyosarcoma.

One of the following types of biopsies may be used:

  • Fine-needle aspiration (FNA) biopsy : The removal of tissue or fluid using a thin needle.
  • Core needle biopsy : The removal of tissue using a wide needle. This procedure may be guided using ultrasound, CT scan, or MRI.
  • Open biopsy : The removal of tissue through an incision (cut) made in the skin.

The following tests may be done on the sample of tissue that is removed:

  • Light microscopy: A laboratory test in which cells in a sample of tissue are viewed under regular and high-powered microscopes to look for certain changes in the cells.
  • Immunohistochemistry : A test that uses antibodies to check for certain antigens in a sample of tissue. The antibody is usually linked to a radioactive substance or a dye that causes the tissue to light up under a microscope. This type of test may be used to tell the difference between different types of cancer.
  • Immunocytochemistry : A test that uses antibodies to check for certain antigens in a sample of cells. The antibody is usually linked to a radioactive substance or a dye that causes the cells to light up under a microscope. This type of test may be used to tell the difference between different types of soft tissue sarcoma.
  • Reverse transcription -polymerase chain reaction (RT-PCR) test: A laboratory test in which cells in a sample of tissue are studied using chemicals to look for certain changes in the structure or function of genes.
  • Cytogenetic analysis : A laboratory test in which cells in a sample of tissue are viewed under a microscope to look for certain changes in the chromosomes.

 

Certain factors affect prognosis (chance of recovery) and treatment options.

The prognosis (chance of recovery) and treatment options depend on the following:

  • Where in the body the tumor started.
  • The width of the tumor when the cancer was diagnosed.
  • Whether the tumor has spread to nearby lymph nodes or distant parts of the body.
  • Whether there are certain changes in the genes.
  • The type of rhabdomyosarcoma.
  • Whether the tumor has been completely removed by surgery.
  • Whether the tumor responds to radiation therapy.
  • The patient’s age and general health.
  • Whether the tumor has just been diagnosed or has recurred (come back).

For patients with recurrent cancer, prognosis and treatment depend on the following:

  • Where in the body the tumor recurred (came back).
  • Whether the tumor was treated with radiation therapy.
  • The size of the tumor when the cancer was diagnosed.
  • How much time passed between the end of cancer treatment and when the cancer recurred.[3]

 

[1]-via Mayo Clinic Rhabdomyosarcoma Definition
[2] -via St. Baldrick’s Foundation
[3] -via http://www.cancer.gov/

 

 

Currently, our research funds will be allocated to the Children’s Cancer Therapy Development Institute (http://www.cc-tdi.org). For many forms of childhood cancer, we’ve seen little to no advancement in treatment options for over thirty years. To overcome this stalemate, cc-TDI is embarking upon a bold scientific course of discovery to create more effective clinical trials for those childhood cancers that are most in need of treatments to save kids’ lives. Other funds will be distributed based on need and to help raise awareness for rare pediatric cancers.

Every year 350 children are diagnosed with alveolar rhabdomyosarcoma. The funding for this type of cancer and other rare cancers is extremely low due to the rarity of cases. In general, the funding for pediatric cancer is less than 4% from the U.S. government’s cancer fund. Without a voice, nothing will change. Shane’s voice will be heard.

Help make sure that Shane’s voice is heard.