Amanda was the inspiration for Turn To Us. This is Amanda’s Story told by her Mother Sally:
I remember that July day when Amanda ended up in the ER at Lehigh Valley because her toes went numb at work the night before. She had a small lump on her leg since about April and I kept telling her to get it looked at. She blew it off, she was busy and she didn’t have insurance. Her co-pay for her health insurance at work was so expensive she would have owed them money every week for the premium! Finally that fateful day came when she had to seek medical help. By the time I got to the ER, she had undergone a series of tests that led to more questions than answers. Immediately my nurse instinct kicked in and I became terrified. Lehigh Valley Hospital got her an appointment at Penn with an orthopedic oncologist. He displayed very little interest in her case and dismissed Lehigh Valley Hospital’s concerns. He diagnosed it as a cyst and told her to call the office when she had health insurance. Finally we could relax a bit. Unfortunately that was short lived as the cyst continued to grow and grow over the next two weeks. I called the oncologist’s office back saying how concerned I was because it was growing so fast. Sadly, they never even returned my call. I got her into the clinic at Lehigh Valley and they referred her to another doctor at Hershey Medical Center. Another month went by until she was able to see him. He diagnosed her with synovial sarcoma. I, Amanda and her fiancé were sitting in the examination room when he came in and said, “Well Amanda, you have a soft tissue sarcoma that’s very extensive. We’re going to start with aggressive chemotherapy and see how effective it is. When we establish a prognosis we can decide if it’s worthwhile to amputate.” Can you even imagine the look on her face or the terror in my heart? What he was saying was if they couldn’t kill the cancer in her leg, and if it had spread, she probably would want to die with her leg on.
She went into LVH on her daughter Alana’s first day of kindergarten. She did five horrific rounds with some of the worst chemo drugs known to man, 24 hours a day for five days straight. The chemo almost killed her. She lost weight, threw up constantly, lost her hair, spent more time in the hospital than she did out of it all the while with her white cell count numbers sinking.
In November the CT of her lungs showed no tumors which put her in remission. So she decided to lose the leg to up her survival chances. She wanted to be there to watch Alana grow up. On December 27 she had her leg amputated at Hershey Medical Center. Painfully, in January, we learned the cancer had returned.
What did all of this do to our family? When she was diagnosed in August of 2006 she had to quit work to even be considered for Medicaid. She hated it; she desperately wanted to keep working. She could hardly walk on that leg but she wasn’t one to ask for charity. The loss of her income and the mounting medical bills left her and her family financially destitute so my husband and I helped pay their bills. This led us to get behind on ours. We ended up selling the house we built and raised our family in for much less than it was worth to get out from under and to move closer to Amanda to help her with her daughter. Alana acted out for her life was in turmoil. She was a scared little girl who was literally watching her mom slowly dying in front of her. If it hadn’t been for the wonderful people in Carbon and Schuylkill counties I don’t know what we would have done. Their support was unwavering. It took a huge financial and emotional toll on all of us. The endless trips to doctors and chemo appointments, three weeks in Pittsburgh at UPMC at our expense, a week in Hershey and other expenses too many to mention were unbearable. I can’t imagine what people without a support system do.
In the end she got turned away at Fox Chase and Cancer Treatment Centers of America because she was on Medicaid. I can still see her at my desk on the phone, tears running down her face. That sad image will haunt me forever. Amanda passed away too soon.
You never want to see your child in pain.
So when Shalmar Herlihy of Summit Hill saw her 8-year-old son black out from a headache last August, she needed answers.
After visiting Keegan’s pediatrician, who advised going to see a neurologist, an MRI revealed Shalmar’s worst fear, the cause of Keegan’s headaches was a brain tumor, located at the top of the spinal cord on the cerebellum.
“I was heartbroken because you don’t want to see your kid suffer,” she said, holding back tears, and adding that the whole scenario was even tougher because Keegan’s dad, Pete, passed away in 2011.
“Your whole world flashes right before your eyes. We both cried about it and then Keegan asked, ‘Am I going to die’ and I said, ‘No, you’re going to fight’ and he has been fighting ever since.”
Over the next few weeks, the widowed mother; her daughter, Kassandra, who was in her first semester at college; and her family and friends helped prepare Keegan for his upcoming surgery and the difficult path he was going to be traveling.
“My family was so supportive through it all,” Shalmar said. “They rallied around him and did what we had to do to get through this. He is one lucky kid.”
At 6:30 a.m., on Oct. 7, 2014, Keegan was wheeled into the operating room and Shalmar waited anxiously in the waiting room.
It took nearly nine hours before mother and son were reunited.
Shalmar had been told that there were multiple complications that could happen following the surgery, including Keegan’s ability to talk and walk could diminish, his balance would be gone and his sight may be impaired.
As Keegan lay in his hospital bed, silent, Shalmar prayed to hear his voice.
And then he spoke.
Keegan spent nine days in the pediatric intensive care unit at LVH learning how to cope with the fatigue, nausea and other side effects from having brain surgery; before being moved to the step-down unit.
Following a brief stay in a rehabilitation center, Keegan came home.
The road to recovery was tough though.
“A brain tumor takes your kid away from you,” Shalmar said. “It takes their personality. They get withdrawn, anxiety, they get depressed. But we worked very hard to overcome that by keeping him social and busy and always talking through things. It also brings out some behaviors.
“We just started to get a glimpse of him coming back to us with his sense of humor,” she added. “It takes a lot out of your child.”
As the weeks went by, Keegan and Shalmar worked to regain some sort of normalcy in the home.
Keegan said that he went through a number of emotions, from sadness to anger, but added that his friends helped him through the dark days.
Slowly, he began to regain his ability to walk for distances and used a wheelchair less and less.
In the beginning of this year, he returned to school at St. Joseph Regional Academy in Jim Thorpe.
Shalmar credits the fast action by Keegan’s pediatrician, as well as Dr. Elizabeth Corbo, the neurologist who found the tumor; Dr. Philip Monteleone, the oncologist; and Dr. Mark Li, Keegan’s neurosurgeon, for the happy outcome of this nightmare.
“The outcome could have been horrific,” she said, noting that 4,000children are diagnosed with brain tumors annually and even benign tumors could cause major problems because of theirlocation. “But .it was a miracle. We are all so lucky.”
Some days Keegan still fights fatigue and balance issues and still has some problems with his vision, but overall he is back to being a normal kid who enjoys video games, playing with his dog, Jupiter, and loving his family
Krysta, daughter of Bill and Chris Hankee, collapsed while exercising in a gym in New York City in September of 2007, at the age of 22, and died a few days later. She loved her friends, family and community. She graduated from Northwestern Lehigh High School in 2003 where she excelled as a student and athlete. Krysta attended The American University in Washington, D.C. for two years and was a member of the American University Field Hockey Team (Patriot League Champions). She was a Patriot League Scholar Athlete both years. Krysta graduated from the Leonard N. Stern School of Business at New York University in Manhattan in 2007, with a degree in Marketing and Foreign Business. Upon graduation she secured employment as an assistant project manager at Triangle Equities of Whitestone, New York where she worked until her tragic death.
Turn To Us has been blessed with a partnership with The Krysta Hankee Memorial Fund.
August 27, 2013 at 3:30 AM I rolled over and kissed my husband and said “Honey, it’s time! I’m in labor!” I got up and showered, text our midwife, and went about our day as if it were any other normal day. We got our 10 year old off to school and our 22 month old off to a friend’s house for the day. My brother came over to help us set the house up for a home birth. He moved all of the furniture in the living room and helped to set up the pool. This was the birth I have always wanted, a home birth and in the water. Crazy to think by the end of the day we were going to have our third baby boy.
Labor was long and hard but I was about to have the birth I longed for. Our plan was to have a peaceful water birth then crawl into bed, nurse and cuddle our new bundle of joy, then have family over to celebrate. This birth was so special to me because I had a C Section with my second son and wanted nothing more than to have a natural, home, water birth. 34 hours later we started to push. We pushed for 2 hours and baby boy was not coming down any more. We had to go to the hospital for another C Section. I didn’t care, I just wanted to hold my baby boy.
August 28, 2013 – here we were 38 hours of labor and I was about to hold my son. I was about to join the “Mom of 3 boys” club but little did I know I was also about to join the “mom of a special needs child” club. As I lay there on the table a doctor came around the sheet to Michael and I and started telling us things other than “It’s a perfect baby boy.” He went on to tell us our new baby wasn’t perfect. Xavier Michael, which means enlightened like God, wasn’t breathing on his own, had a foul smell to him, had a cleft pallet, and they could only see one eye. As I lay there I had a peace I cannot explain but it was one that surpassed all understanding. The only thing I cared about at that moment was being able to kiss my son. They wrapped him up and brought him to me and when I kissed my baby boy for the first time he didn’t have that wonderful new baby smell but had a horrid odor. It didn’t matter because all I knew was I loved him.
From there they took Xavier to the NICU and me to the recovery room. I lay there waiting for them to bring him into me so we can do skin to skin and I can nurse him but he never came to me. 38 hours of labor I was exhausted and thought they would wake me up when he was ready. The nurses took me to my room and I still haven’t seen my baby. The next day they wheeled me down to the NICU to finally see my baby boy. He was in a tiny little crib with wires all over him and the nurse gently handed him to me to hold for the first time. Our family was in the hallway watching through the window. I sat there with a smile on my face so excited to hold my helpless baby boy as I looked through the window at my 10 year old baby boy crying and I couldn’t comfort him. Later that night Xavier was life flighted 2 hours away to a hospital on the other side of the state.
I sat there in a wheel chair not able to walk after having surgery and watched my new baby boy get into a helicopter. This isn’t how it was supposed to happen. We were supposed to birth him at home and cuddle and nurse him. Because he had acid in his blood at birth and the cleft pallet he was unable to have milk let alone breast feed. I was never so motivated to get up and walk, my son was two hours away from me. I began pumping to be able to take milk over to the other hospital. My husband would drive over to the other coast two hours away every morning to be with Xavier and to take him milk and then drive back every evening to be with me. I laughed because I said I married the pool guy but had the milk man’s baby. As Michael continued to travel over every day he would learn more and more about Xavier. Xavier was born with ecoli which gave him the odor, he was born with an undeveloped brain and was causing subclinical seizures which means we couldn’t see them but his brain was seizing. Many times the doctors would beat around the bush and not tell us exactly what they were thinking until my husband looked at the doctors with such confidence in our faith. Michael boldly said “I am a believer in Jesus Christ and in His miracles. I need to know what you are thinking so I can go back to our family, friends and prayer worriers and tell them what to pray for.” With that Xavier’s neurologist looked Michael in the eyes and said “we serve the same God.” They never beat around the bush after that.
We were able to get a condo closer to Miami to stay while Xavier was in the NICU. We were still about 45 minutes away but much closer than 2 hours. We stayed there for two weeks and drove daily to see him. Every Sunday morning, though, we would drive back to Naples to go to church because we knew that is where we needed to start our week in order to get through the rest of it. After service one Sunday our founding Pastor came up to me and said “Tia, in my prayer time this morning God told me to tell you to release Xavier.” A huge knot formed in my throat and tears welled up in my eyes and all I could do was smile and nod. I knew God spoke to me that day through my Pastor and as much as I didn’t want to submit to this request I knew I had to. Monday morning we went to see Xavier and I sat with him and when I was ready to leave with tears streaming down my face I prayed out loud “Lord, this is my baby that You sent to me and if this is all of the time I’m aloud to have with him I thank You for him. Lord I release him to You. Do with him what You will. In Jesus name, Amen.” After that prayer I walked out of the room with tears still streaming down my face but with a peace upon me.
The next morning we went to visit Xavier. I walked into the NICU and saw him wrapped in a blanket no longer under lights and wires were removed. My first thought was “they’re keeping him alive for us to say goodbye.” I ran to him and asked the nurses what happened. Our nurse walked over to me with a smile from ear to ear and said “Tia, no one can explain what happened. All of a sudden he started to do 1000% better over night!” That’s what God meant by release him. I had to let Him begin to heal Xavier. As a mom my kisses are supposed to heal booboos but what I learned that day was that God used our kisses to transfer His strength and His power.
Five weeks went by with Xavier in the NICU and in that time we had signed the Do Not Resuscitate and Accept Natural Death forms as they were convinced he wasn’t going to make it. What I absolutely love about Miami Children’s Hospital is that even though they thought he wouldn’t make it they still did everything they could to help him. When we started the process to leave the hospital to come home with our baby boy is when we started dealing with the insurance. We didn’t have insurance when we had him and because of his needs he was going to need Medicaid. The day we were getting ready to leave the Medicaid office informed me that my husband made too much money and we would not qualify but for share of cost. Share of cost is like a monthly deductible that we have to pay and then they pay anything after that. Our share of cost amount was $500 less then we made gross, including my oldest son’s child support. I spoke with a woman at the office and said “you want me to use my oldest son’s child support to pay my youngest son’s medical bills, not pay rent, and not buy food for my family so then you can help us?” We were in shock.
My husband and I had to think about what we could do. One option we never wanted to even speak but had to consider was give Xavier up for adoption so he could get the medical services he needed. Another option was for my husband to take a pay cut. We opted for the pay cut because we knew no one else could care and love Xavier like we did. With that we were able to get the insurance we needed for him. Now we were home with a special needs child, a toddler, and a pre-teen. We had no idea what we were in for or what was out there to help us. My degree is in Rehabilitation Counseling and I still had no clue what was available for us. Xavier is almost 2 and we are still learning of organizations and help that is available. He is doing great and brings us so much joy! His big brothers absolutely adore him. He is still having sub-clinical and also clinical seizures that we are working closely with his neurologists and neurosurgeons to control. Every day with Xavier is a miracle and a blessing.
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