Madison's Journey
The Madison Childhood Cancer Foundation was created in memory of Madison Emmanuel Whitaker Vinnekamp. Madison was a young, energetic eleven year old when he was diagnosed with T-cell Lymphoblastic Lymphoma which is a Non-Hodgkin’s type of cancer. One day in 2007 just before school began and a few weeks from his 12th birthday, Madison started coughing. We treated it like any parent would with cough medicine, and took him to the doctor because this persistent cough wouldn't disappear. The pharmacy didn't have the prescription cough medicine available, it was after five and the doctor’s office was now closed. The pharmacist suggested I buy an over the counter cough medicine because what the doctor prescribed was close to the one she pointed out on the shelf. I was outraged because we had just used an entire bottle of Tylenol cold and cough and it did not help. I called Madison's dad who was out of town till Sunday to express my concern and our son walked outside on the deck to ask a question. It was warm outside and Madison was in shorts with no shirt. I noticed that Madison had lost a lot of weight in his waist and his chest looked bigger. As parents of a son who was almost 12 we thought the drop in weight was due to a growth spurt. We would need to get him some new shorts before school because the one's he had been falling off. School shopping was not far away, we had planned to go when Madison's dad got home on Sunday. The plan was to call the doctor on Monday to get the prescription changed. We were going to the beach that very next week just before school started and we wanted Madison to get over this cough so he would have a good time.
Sunday came and dad brought Madison and his brother tons of school clothes from a skate shop he stopped at. The boys were so excited, they checked out their clothes and we asked them to take them upstairs to their rooms. When Madison came back downstairs he was pale, clammy, and having a hard time breathing. He sat in the recliner to catch his breath and we decided to make another appointment because the doctor he saw on Friday was not who he usually sees. Later on that evening we go out for dinner and then to Target. Madison did not feel well and he got sick on his stomach so we headed home. I call Monday morning and the next available appointment was Tuesday. The boys were outside and Madison had crossed the street to come back home from his friends house that afternoon. He sat down feeling in our living room out of breathe, tired and pale once again. Madison just rested in the living room chair coughing while he watched TV. Later on that evening our family went out to eat dinner and he said he didn't feel good. He got sick on his stomach and we thought maybe he had a virus. So we headed home for the night. We were frustrated and worried about his shortness of breath so I called the doctor with our concerns.
The nurse called back to say the doctor might order a chest x-ray since he had been sick for so long. We told her that we wanted to get the chest x-ray today so I would have it for our appointment the following day. As we debated about getting Chinese food before the x-ray Madison acted as if he was feeling better. Thinking he had the flu I said will get the x-ray first then bring home takeout. We arrived at the hospital and Madison went in for the x-ray. While he was with the nurse he started gasping for air and she had him sit down beside of me. The nurse had this strange, angry, terrified look on her face. She asked if the doctor had seen Madison before he sent him to get an x-ray. Then she wanted his phone number but as she seemed to decide that calling his doctor was not the way to handle this situation. By then I was getting nervous, she took us to an emergency room and walked out.
The doctor came in while I was sitting beside Madison as he lay on the bed. He asked me to look at Madison's x-ray so I followed him out of the room. I saw the x-ray but I didn't really understand what I was looking at. The ER doctor began to show me his lungs, one of which was the size of a softball and the other a basketball. There was fluid compressing the one lung and pushing his heart to the other side of his chest but he did not tell me that exactly. The doctor was said Madison is very sick, I do not know what is wrong but the fluid is not normal. He went on to say you need to drive to Children's Healthcare of Atlanta at Scottish Rite right now. He told me not to wait on an ambulance, handed me a copy of Madison's x-ray and MapQuest directions to a hospital we were not familiar with. No time for takeout, we quickly headed for this hospital that was about an hour away.
Our family had not lived in the Atlanta, Georgia area long so we did not realize that we were driving to one of the top fifty children’s hospitals in the United States. When we arrived we found the emergency room entrance, filled out admission information, waited for triage, and handed the nurse the disc with Madison's chest x-ray on it. Instantly he was taken back to an ER room and then moved to the Pediatric Intensive Care Unit. The hospital staff acted quickly, got an IV going, and performed a cat scan which indicated something we had never imagined for our son, cancer.
We were told the fluid buildup in his chest was due to cancer but they did not know just yet what type he had. They could see a tumor located in the middle of his chest close to where his heart should have been. We had only moments to take in this horrible news and we were overcome with fear of the unknown. Madison was asking what was said when the doctor took us out of the room. We decided to be honest, talk openly, and not hide anything from our son, later this would be an unwritten rule. Madison was scared and upset with the possibility he may have cancer. I don't think any of us really thought it could be true. Now the doctors telling us the next step was to insert a tube in his chest to drain the fluid which would help his breathing. Madison was taken to surgery and once the tube was in place he just seemed to drift in and out of sleep for several days. The results of the fluid from his chest were back in a week and the blood test results were expected in a few more days. An oncologist, a cancer doctor, requested a meeting with us to talk about the results and how to proceed. He said without hesitation, the fluid indicates cancer and I am almost 99% sure it is a Hodgkin’s Lymphoma however the blood test will confirm this diagnosis. Madison now needed a central line placed in his arm for medicine or fluids. This line will eliminate multiple pokes and the uncomfortable IV that is normally in your hand for short term hospital patients.
Madison's tumor was so close to his heart and his breathing ability was not good enough for him to undergo surgery at Scottish Rite. The hospital wanted to transfer him to Children's Healthcare of Atlanta (CHOA) at Egleston for the line placement so he would have access to advanced heart and breathing equipment. The tube needed to be moved while he was in surgery so the fluid would drain at a faster rate. Within an hour our son was loaded onto an ambulance and transported to CHOA at Egleston. Later we would call this hospital our home away from home.
On August 14, 2008 a man, who we would later know as Madison's doctor, came to check in on our son He told us that Madison's blood test confirmed that he had cancer, it was called a Non-Hodgkin’s T-cell lymphoma. We were then presented with a chemotherapy treatment plan that would last two years. Madison's whole world would change forever and our family would never be the same again. After we signed the consent form for treatment Madison began chemotherapy. After a total of about four weeks Madison was able to breathe normally and his tumor had decreased almost completely. We were moved from the intensive care unit to a room on The Aflac Cancer Center and Blood Disorders Service floor. We were given a handbook to help us get familiar with cancer terms and began battling a childhood cancer that had taken over our son's body. Madison was ready to have the tube removed from his chest; they pulled it out without any pain medicine. Surgery was needed to replace his central line with a port in his chest. A port is a long term way to administer medicine, fluids, and blood products. The next several months we learned about his cancer by reading everything we could and through our own experiences. We became familiar to x-rays, cat scans, echocardiograms, surgery, ports, finger pricks, low blood counts, getting blood or platelets, steroid induced diabetes, insulin, daily medicine, decreased strength, no appetite and emergency room visits for fevers that required at least a few inpatient days.
Chemotherapy had caused his hair to start falling out so Madison asked his dad to buzz it. Dad made it a fun event; he gave him a reverse Mohawk for laughs. The fact that Madison had cancer was not very easily hidden. It took some time to get use to people we did not know asking him if he had cancer. School had started while Madison was in the hospital. He was not able to attend even when we did get to come home, so a homebound teacher came two times a week. Madison could not do the things such as jumping on the trampoline, wrestle with friends, ride bikes, or play ball. Instead Madison focused his energy on reading books, drawing, video games, watching movies. Around the end of January Madison was able to go back to school. We were worried about him catching a cold and walking so much but he handled it like a pro. Going back to school added back a special part of Madison's life, socialization with his friends and a chance to just be normal. Madison was a very intelligent student achieving mostly straight A's even throughout his treatment. He did not complain about school and was happy to have the chance to just be there. Life seemed to feel a little normal and our son's health was improving each day.
We asked the doctor why treatment lasted so long since he was doing so well. He responded by explaining that the remaining chemotherapy Madison would receive is targeted at the five percent of cancer cells not seen by the naked eye under the microscope. The doctor visits seemed to be routine and Madison was reaching the point in his treatment that required only 2 visits to the clinic a month. Madison was beating his cancer and our family felt at ease.
Madison got to go to Camp Sunshine, a wonderful camp for kids with cancer that is staffed with nurses from the hospital. He discovered that he could do things outside again even though he had cancer and took a girl to the dance. After camp he went to visit his grandparents and cousins for a week. Then as a family, the four of us were able to go to the beach for vacation that summer. We forgot our problems and just enjoyed spending time together, swimming in the ocean and blasting off fireworks every night on the beach.
Soon our son would be starting the eighth grade. This time he would be able to go on the first day of school and he had this awesome blue Mohawk that he loved. Everything was going in the right direction; we were counting down the months left for treatment, planning to go to Ireland for his Make-A-Wish end of treatment celebration.
November came and Madison got a cold, he started coughing again and started having fevers. We would go to the hospital several times for IV antibiotics, and then one doctor suggested doing a chest x-ray. This was a repeat x-ray; the radiologist had taken one maybe two weeks prior so I was not nervous. I just wanted to get my baby the right medicines, eliminate the fevers and get him well. The doctor pulled me aside to look at his x-ray and I was absolutely shocked, the tumor looked like it was back. I was told to make an appointment with his oncologist on Monday, and we were sent home after IV antibiotics. I set up an appointment for Tuesday and by that morning Madison could hardly walk to the car.
As usual we signed in, waited for his name to be called, got his finger pricked, and talked while we waited for the doctor. They wanted to do an ultrasound on his leg joints since he was having so much trouble walking. Results suggested fluid building up, and we went for immediate surgery to take a sample, drain and clean the area. The surgeon told us that he could not get any fluid for a sample but he felt that antibiotics would help. His blood counts had visible cancer cells which meant that his cancer was back.
On December 2, 2009 Madison had relapsed and he needed radiation to shrink the tumor that had come back. His doctor told us that we could try the ten day radiation treatment plan suggested and by the fifth day they would know if he was responding. The chances of him surviving throughout Christmas were very slim, 10% to be exact. Radiation was a chance that we had to take and amazingly it did shrink the tumor. Madison was able to breathe better, we were so thankful. Madison began the chemotherapy designed for his new diagnosis, T-cell Acute Lymphoblastic Leukemia. If we were able to achieve remission a second time then he would need a bone marrow transplant. Our family was tested to see if we were a close enough match to be a stem cell donor. We were not a match but the good news was that they found a match through a cord blood donor. After the first week there was no change in the amount of leukemia cells but after several weeks a test showed that only 40% leukemia cells remained and it seemed like we were heading in the right direction. We continued chemotherapy nervously awaiting the next bone marrow aspiration, hoping for remission and terrified of bad news. We watched as our child was given the medicines that made his hair fall out, and waited while the last two 'big guns' (chemotherapy medicines) were pumped through his port, we wandered if he was getting better, will it work, and what if it doesn't. When that day came we waited as our son entered surgery alongside several other nervous families who all had frightening stories of their own. Madison's procedure only took about an hour; it seemed like such a short time for such an important life changing result. We had been up all night with a fever, then the bone marrow aspiration, so we had just fallen asleep when the doctor came in with the results. I knew when he asked me to go to the conference room to talk that I did not want to know the results. Still I follow the doctor and sit down to find out that the cancer remained and was resistant to all of the typical chemotherapy used to battle Madison's leukemia. We asked what choices we had, where we could turn for something that would get rid of this cancer that was taking our child. I knew the answer already; there was no other route to go except for alternatives that had not been approved as a treatment plan yet. While we felt helpless our doctor searched for investigational drugs and clinical trials that might help Madison. The next day the doctor told us of a clinical trial that was being used to treat T-cell Acute Lymphoblastic Leukemia that might help us save our son's life. It was out of the state and Madison was in no condition to travel even if our insurance would cover it, which it would not. I will be forever grateful to the doctor conducting this clinical trial because he cared more for the life of our son than he did about keeping his treatment plan a secret until he had published results. Another chance was given to Madison with the treatment plan for the clinical trial emailed to our doctor we could provide Madison with the proper chemotherapy dosage without traveling away from the security of his doctors, nurses, and familiar atmosphere. We were able to try a different approach aimed at remission that would take only 33 days. Five days after beginning his treatment if he did not have any fevers he would get to go home and complete the remaining chemotherapy as an outpatient. On the last day as an inpatient to a very lengthy stay totaling over 30 days Madison got to go home. Before we got our discharge papers Madison had to get a bone marrow aspiration again. I was not going to worry so much because we still had a few more weeks of chemotherapy before they could say that the cancer was gone or not. After the procedure, Madison got to come home. It was on a Monday and he had an awesome welcome home lizard to keep him company. Not much of anything could keep Madison awake for long he was sleeping almost 20 hours a day, but this lizard brightened his eyes and kept him awake for quite some time. The next day was great, Madison got up early, played with that cute little green friend of his and we all were just so glad to be together at home. We were due to go back to the clinic Wednesday morning for chemo and to check blood counts. Madison got sick during the night and we took him to the hospital instead of waiting for our appointment. There are no words to describe the next few hours that seem to exactly match what we experienced.
Madison lost his battle of childhood cancer due to complications that we were not able to prevent. On Feb. 24, 2009 Madison, our precious little baby angel left this world and escaped all of the pain and suffering that he had endured for almost two years. It is with great pain that I included such a short story about Madison because there was is so much to tell about his life and the impact he made on different people he encountered throughout his life. He was a son that went beyond a parents expectations, loving protective brother, special friend to many, artist, music lover, a writer, actor, comedian, excellent student, grandchild, cousin who was brave soul and intelligent far beyond his years in age. We are thankful that we had thirteen years to spend with our son but it will never be enough time in our eyes. Life never provides you with enough time to do everything that you could possibly do but life does give people the chance to enjoy the time we have with those that we love. It is the times together that create the reasons to live and enjoy life, and it is those same times together that make you smile, laugh, cry, and feel close to those you love when they are no longer with you. So if I had only piece of advice to give it would be enjoy every minute even the ones that might be part of your every day routine and live everyday like it is a gift because it is just that, a gift.
