Fundraiser for Jackson toddler battling neuroblastoma - KFVS12 News & Weather Cape Girardeau, Carbondale, Poplar Bluff

Fundraiser for Jackson toddler battling neuroblastoma

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JACKSON, MO (KFVS) -

A Jackson boy battling a rare form of cancer is getting continuous support from his community and beyond.

Wyatt Glastetter, 2, is fighting neuroblastoma. He has now completed seven rounds of chemo, and 14 rounds of radiation. His parents remain optimistic, and are focused on faith.

Meanwhile, there's an upcoming fundraiser to help Wyatt and his family.

The "Student Santas" are selling St. Louis Cardinals tickets for the game against the Rangers on Friday, June 21.

The tickets are $35, and part of the proceeds will go the Glastetter family.

"Student Santas" is an organization that raises money all year to provide Christmas presents for kids in the area.

You can purchase a ticket by contacting the Student Santas at studentsantas@yahoo.com.

You can also "like" them on Facebook for more information.

The following is a written account of Wyatt's full story. It's told by Wyatt's mother, Stacy Glastetter.

"Our family took a vacation to Destin, Florida the week following Labor Day. Wyatt loved the beach and showed no fear of the water. He was about to turn 18 months old. After the first couple of days he started to limp here and there. I looked at his foot and didn't see anything in it or a wound..so I moved on. He played hard and took great naps..no fever and seemed to eat well. Still every once in a while he would limp. We returned home and he became more irritable and was waking at night screaming a lot and continued to either limp or walk on his tip toes. I took him to his pediatrician in Cape Girardeau. I explained the symptoms and he said he may have Toxic Synovitis, an infection that presents in a joint instead of the lungs...he thought it presented in Wyatt's left hip. He told me to take him home..within a week he should be fine just continue the Motrin.

One morning the Motrin wore off and Wyatt couldn't walk. He came crying to me and crawling.I called the doctors office again and the nurse told me to continue the Motrin as the doctor ordered. They told me I was overreacting. I knew in my heart I was not so Instead I called my husband home from work and we took Wyatt to Children's Hospital in St. Louis. They first told us the pediatrician was probably correct but we begged them to do some tests in the ER. They did an x-ray and he had a broken femur. We were in shock. They told us a fracture like that could only happen in a car accident or it's mostly seen in elderly patients. The break was at the ball joint. We were admitted for further tests. The next day we had a physician come by to talk to us about Wyatt's condition. They couldn't figure out how he had a broken femur in that particular spot. They needed to put Wyatt in a spica cast to immobilize him. Wyatt had surgery the next morning and the cast was put on. It wrapped his waist and went down both his legs. During this time of testing we are also investigated for child abuse. I felt like I had been punched to be accused of such a thing. We needed answers. 

We were all packed and ready to go home later that next day. Then a senior radiologist looked at Wyatt's films. He asked the orthopedic doctors to call in other physicians to do some more testing. To them it was unexplainable how a baby would have a break like that. We took Wyatt down for a sonogram of his belly. It took about 4 minutes...a doctor did the sonogram and told us to go back to our room. By the time we got back to our room we had 3 physicians waiting on us. They told us Wyatt had a large mass in his left adrenal gland sitting on top of his kidney. They told us at that time, they thought it was Neuroblastoma. We unpacked and stayed for 2-1/2 more weeks. We were devastated. Many emotions happened in those days. They still happen. At first I would look at him and cry. I would sing " Your are my sunshine" but could never finish because of the end.. " Please don't take my sunshine away.." I felt physically ill. Then I started receiving texts and voicemails from people. Telling me how sorry they were. I prayed that night until I was exhausted. After listening to the messages and reading all the comments it was like a light bulb went off. I was peaceful. I have no other way to explain it. From that moment on I knew my precious baby would be fine. God is in control.  When people would call me from then on I would be the on to comfort them. 

During those 2 weeks Wyatt had a tumor biopsy, bone marrow biopsy and a Lumen Broviac catheter was placed in his chest. I never in a million years thought my baby had cancer. The tumor had grown rapidly, they told us. They thought it had only been there about 3 weeks. That meant it was growing while we were on the beach. Our whole world came crashing down on us. Our little miracle was in a battle for his life. His official diagnosis is Stage IV Neuroblastoma with bone marrow involvement and limited spots of bone cancer. The tumor had grown about 3 inches and was pressing against his spine and smashing his left kidney down almost flat. It had metastasized to his left femur causing the break. He has two spots of bone cancer above each knee. My baby had been in severe pain and we just didn't know. He is so tough. He ran around for 2-1/2 weeks with a broken leg.

Childrens laid out a treatment plan for our son. My husband and I discussed the treatment plan and we have modified it a bit. The protocol that most hospitals treat with includes 6 rounds of chemo and a stem cell transplant after surgery. We are very concerned about the stem cell transplant. With a transplant the child is given extreme high doses of chemo to irradicate all the cancer in his body and then they "rescue" the patient by giving them back their own stem cells. The side effects of the chemotherapy given are so bad that we do not want our son to go through that. The effects of that chemo would walk with him through life. It could possibly even cause other cancers. We did collect stem cells just in case he does relapse and then our only course would be stem cell transplant.  I researched many different plans and hospitals and I kept coming across an oncologist and surgeon in Manhattan at Memorial Sloan Kettering Cancer Center. They have group of oncologist's that are dedicated to strictly Neuroblastoma treatment.  We have opted to take Wyatt to Childrens for 5 rounds of chemotherapy and then in early February we took him to MSKCC for tumor resecction and his last round of chemo. Once a few weeks go by he will have more scans and if there is no evidence of disease then Wyatt will start 3f8 antibody treatment, Accutane and radiation at MSKCC. Their main goal is to minimize the use of the most toxic forms of treatment, such as chemotherapy and radiation, and to maximize the use of immunotherapy — a form of treatment that is designed to destroy neuroblastoma cells by strengthening the patient's own immune system. The 3F8 directs the patient's immune system, which ordinarily acts only to control infections, to attack neuroblastoma cells and kill them.

Wyatt has completed 7 rounds of chemotherapy, 5 being high dose. 4 bone marrow biopsies. 14 rounds of radiation to the tumor bed and to the left femur. An 8 hour surgery to remove the tumor and lymph nodes. Multiple Mri's, CT Scans, MIBG scans and other tests. 

This week we have started the 3F8 antibody treatments. This course of treatment lasts 2 years. It is very painful for these children. They are infused with an antibody that attaches to the GD2 marker on the neuroblastoma cancer cell.. The problem is that marker is also on nerves cells.. It irritates those cells and sends signals to the brain that the child is in severe pain. My 2 year old spent his first week of 3F8 on dilaudid and Ativan.. Plus many other drugs.  This week he will have completed 14 rounds of radiation. 

We will do stem cell if Wyatt would happen to relapse. We hope and pray every day that he does not.

Facts about Neuroblastoma:

Neuroblastoma is a rare cancer of the sympathetic nervous system — a nerve network that carries messages from the brain throughout the body. Each year there are about 700 new cases in the United States. It is usually found in young children and is the most common cancer among infants. These solid tumors — which take the form of a lump or mass — may begin in nerve tissues in the neck, chest, abdomen, pelvis, or, most commonly, in the adrenal gland. They may also spread to other areas of the body, including bone and bone marrow.

The cause of neuroblastoma is unknown, but most physicians believe that it is an accidental growth that occurs during normal development of the sympathetic nervous system.

Stage IV diagnosis offers a 50% survival rate because it has spread to other areas. I refuse to believe their numbers. I believe in God and my child.

There is also a 50% chance of relapse we are told.

We have a faith in God that he is directing us. He led us to MSKCC for a reason. We feel its the best place to be for Wyatt. 

Our son is our world.

We have faith that he will be healed. He is extremely strong. Most day's he plays like a normal 2 year old. It makes you forget he is fighting for his life. When I remember, I'm heartbroken all over again.

It's hard for me to write about sacrifices I've made for my son. He's my life. As most mothers I would sacrifice anything for him and the thought of not doing so makes me feel guilty. It's just how it is.. Not really a sacrifice. Its my job. The biggest thing we have done is to spend 4 months on the Upper East Side in Manhattan. To be away from family and friends. To not have a normal everyday life with work and social activities. We make best of being here. We spend time at Central Park, the zoos, museums, take long walks and once in a while go to a more tourist area. We plan on seeing the one World Trade Center building and the Statue of Liberty before we leave. 

I advocate for my son all the time in little things. He doesn't do well with oral meds.. So I insist on most everything IV. I had a nurse tell me, "It's only Tylenol. " in which I replied "Well then, it's only vomit." From that day on we only do IV Tylenol. 

When Wyatt cannot eat or drink because of testing or radiation- Ray and I won't eat or drink. This week we all get our first meal at 4 pm. I couldn't in good conscience eat if he cannot. 

I never keep my mouth shut. That's part of being a Slinkard. If they handle Wyatt rough or are not kind, I tell them. Sometimes in a polite manner and sometimes in my Slinkard way. I've witnessed lots of parents just going with the flow. They follow and listen to whatever the medical professionals tell them. I don't do that. Ray and I listen and then we make a decision. I can't understand why parents do not speak up. Just because your child has cancer doesn't mean he is not your child. These kids fight for their lives everyday. I would be a bad parent if I didn't fight just as hard to get him superb care. 

The stress of an ill child will take a toll on your whole life. Cancer has tried to take my child. It has at times weakened our marriage and at others times pulled us closer than ever before. It has strained us mentally, physically and needless to say financially. Ray and I made a promise to each other to not let cancer win. It will not beat Wyatt and it will not defeat our marriage. Do we still argue? Oh yes! How could we not? 

We are not perfect. We make mistakes everyday. At night.. When the days over and I can sit and reflect  on what happened, I talk to God. I'm grateful I have a rock. I'm grateful no matter what I've done that day I can let it go to God. That's what gets me through."

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