T is for Teratoma

T is for Teratoma

My April 18th blog introduced you to my sister, Jolene, and part 1 of her story. Today, we will learn more about Jolene and Sam, her son. Another miracle. Spoiler alert, you may need tissues.

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Sam was a very happy child, and we were ready to move on, literally, we put our house on the market by owner, and we were general contracting the building of our new house. At 1 ½ years, Sam, started to be very lethargic and was vomiting. The first visit to the Doctor, we thought he was dehydrated from a flu bug, so we took him in for IV fluids. Why are all of my friends kids getting in trouble and running all day, and mine isn’t? The second visit, he tested positive for strep, so we put him on antibiotics. The third visit, Sam was sleeping 20 hours a day and he didn’t flinch as the doctor examined him. At this point we were all concerned. Our doctor sent us to Children’s Hospital of Wisconsin and prepared us that we may be there overnight. I went home where Aaron was going to meet us, as I had to do payroll and book a trip for a friend (I was assuming Sam had a little infection that would require overnight iv medication).

Sam was placed on oxygen immediately after arriving in the ER. He had no energy and barely moved on the bed. After a clear chest x-ray, he was taken to the CT scan. When the scan was done, and we were still in the room the nurse came and took our lead vests. We could see the chief of radiology in the control room looking at Sam and then looking at the scan repeatedly; he then came in with 3 others in tow. He grabbed my hands. The nurse grabbed my shoulders. The tears started even before I heard, “Your son has a brain tumor, and we need to operate immediately”. When he asked if we had any questions, I said, “Can I hold him?” As I sat holding him, the doctor told me to take a deep breath, the next 24 hours are going to be the hardest, but it is operable. The only brain tumor that I knew about before this, was Pastor Mitch’s son who passed away when he was 12, so my panic button was pushed. I needed that “slap in the face” to calm down. Aaron then asked to see the scan, and the nurses took Sam. I was then escorted to a new room where I could make a couple of phone calls.

The first person I wanted to call was my mom, and I realized that she and my sister were on their way home from camp. So I then decided to call my dad. I was asked what his phone number was…what?! God, in his love, put my father’s work number in my head which I have not called in years. The nurse called and asked for him, she then said, “Hello, Mr. Metz, this is Sharon from Children’s Hospital. Your daughter, Jolene, is here and she is a little upset” Oh boy, “Dad” At this point I sobbed again. After another deep breath, I told him what was going on. Bless my father, he said he would pick up my mom and sister and head down to the hospital (by that time we will have more information). He then prayed with me. I do not recall my dad ever really praying spur of the moment before, and I needed it. I then called my best friend whom I was throwing a bridal shower for on that Sunday (yes, in two days). She, of course, cried with me and then said forget the shower. We have a baby to take care of. She came to the hospital every day and brought me breakfast. 

After those phone calls, they took Aaron, Sam, and I back to the ER. By that point, every staff member knew what was happening. The kindness that poured from each of them made a difficult situation a little easier. They let us use the unused nurse station to call family and friends, since almost everything was long distance. We were then moved to another location in the Emergency room to prep him for an MRI. We were given some more instruction, and Aaron’s mom and sisters arrived. The nurse then cut off a lock of his hair, gave it to us, and asked us to say goodbye. They took him away for a tracheostomy. Dr. Kaufman came in at 9pm and asked if we wanted him to talk to just us or our family too. We said speak to the group, as that evening we had 40 family and friends supporting us in the PICU waiting room. Due to the delicacy of the surgery, he was going to perform it the following day so he could be well rested. We were then allowed to go and see Sam. We went in, along with our parents, and Pastor Mitch.

Sam in his hospital bed

Sam in his hospital bed

As we walked in the room, we all did a double take, as we looked at the rocking chair. I looked at Mitch, and said, “is that your son?” The rocking chair had a plaque in honor of Travis Schultz, his son’s name. It was his name, but different dates, and his son died in Georgia. What he was even going through, I cannot tell you, but it broke my heart that he relived it, and at the same time, was a comfort to have someone there who experienced this first hand. As I looked at the rocking chair, in my heart, I heard, “I love him even more than you.” After a really rough night, I dressed in scrubs, and carried Sam to the operating room. As I was holding him, the doctor gave him anesthetic, and he went limp in my arms.

Sam's scar

Sam’s scar

At that moment, I knew that he was God’s son, before mine. I had to give him to the Lord. I didn’t know the outcome, but He did. The surgery was expected to last 4-7 hours. It lasted 11. When it was over, Dr. Kaufmann came in to give us the final update. It was a very large mass, the main tumor was the size of a golf ball with cysts all around which made the total about the size of a baseball. If they would have even waited a day, the outcome would not be the same. Sam had a teratoma – a tumor that although not cancerous was malignant due to its location in his brain. He also said, “We had to go through the emotions part of his brain, he may never smile again.” I was prepared for brain damage, blindness, etc, but to never see my baby smile again was a hard thing to swallow. When they wheeled little Sammy in from surgery, I fell to my knees and sobbed, gut wrenching sobs. Sam’s surgery was on a Saturday. Monday, I was told to go home, take a shower and a good long nap. So I did, but I longed to be at the hospital. On my way, I turned on the radio and this song started playing. I had never heard it before, but it exemplifies everything that we were feeling. “He’s My Son” by Mark Schultz

http://www.youtube.com/watch?v=3YK3JR-4Wpg

Sam was discharged on Wednesday, 4 days after his brain surgery. We got home and Aaron and I were so excited to go to sleep in our own bed. Well, Sam was on steroids. We went from a child who slept 20 hours a day to being awake 20 hours a day. Aaron and I were running on fumes. On Thursday, I had to give Sam all of his medicines. As soon as I gave Sam his anti-seizure medication, Aaron asked what I gave him. I told him, and then he said, “how much?” NO!! Instead of 2 mL, I gave Sam 2 Teaspoons, or 10 mL, 5 times the dosage. Aaron yelled at me to call the doctor, and I panicked. My son can survive brain surgery, but he cannot survive the 1st 24 hours home with his mother. I called the neurosurgeon, and the Doctor on call asked me to take a deep breath and explain what happened. I did, and she answered and told me that he will be okay, I need to skip the next dose, call someone to come over, and go to bed. I did. My mom came over, and Aaron and I slept. The next few months were a little difficult, as I tried to keep him from bumping his head. We had another surgery to place a drain in his head, but overall Sam did remarkably well.

The following April we decided to take him to Disney World, where 13 hours after landing, Sam had a seizure. We spent 3 days in the hospital, and then 2 days at a friend’s, and then 3 days in our room at Disney. In spring of 2008, Sam was 5. He was doing so well, and we went to see the Neurosurgeon for a checkup, and he walked in with 3 interns. It isn’t always good when he brings in others. The remaining cyst appears to be growing. They were not sure how aggressive it was, so they wanted to let Sam be a kid for the summer and we would go back in August. They had already discussed how they were going to remove it. 

Sam's Wish

Sam’s Wish

This was the summer that Sam became a part of Make-A-Wish. The day that his wish granters came, I got the phone call from the Doctor saying that the tumor hasn’t changed, so they were not going to operate. I then told the wish granters, and they were so kind, they said that he is going through more than most kids, and once you are in the program, you stay in the program. So they sat down with Sam to learn more about his wish. Sam asked to sing the National Anthem at a Milwaukee Brewers baseball game. He got his wish the following summer. On July 12, 2009, he sang to a sold out crowd at Miller Park.

 

 

Sam still needs prayers, as does the rest of the family. He has more testing coming up soon, with the potential for another surgery. Please keep him, his family, and all of the medical staff in your prayers. We know Sam can keep doing wonderful things and is growing into an amazing young man!

 

Please take a look at my next post as well “Transplant Needed” posted today – fundraiser in Albuquerque, New Mexico for my friend’s son that needs a liver transplant.

 

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8 thoughts on “T is for Teratoma

  1. Jolene has to be an incredibly amazing woman. To go through something like this, you have to be strong. I can’t imagine handing my baby over for brain surgery and being told to tell him goodbye. She’s been through so much. She has an adorable boy. Sam is a fighter. I’m glad that she has been able to see him smile again. Elle @ Erratic Project Junkie

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