Honored Kid

Madison P.

Age 9
Madison P. Kid Photo

Location

Kentwood, MI, US

Diagnosis

Rare form of brain and spine cancer . Choroid Plexus Carcinoma

Date of Diagnosis

January 2011

Status

In treatment

Treated At

Helen Devos Childrens hospital

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My Story

Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure. I would like to share with you about my first baby Madison she was born on September 4, 2010 a healthy baby girl weighing 6 lbs 12 oz. full term baby no problems during my pregnancy , everything was normal. Then when she hit 4 months old that all changed. Our lives were turned upside down. On January 5, 2011 we rushed our baby to the near by ER bc she was continually vomiting and her fontanel was raised more than before. The drs at the ER ran every test on her and nothing came back abnormal. After 3 hours of telling them please take a scan of my drs head, something isn't right. Finally they did one and found a mass on her brain. They immediately rushed us by ambulance to the hospital that deals with more of these types of cases. When we arrived at spectrum health hospital we rushed to the ICU and had a room full of drs from neurologists , neurosurgeons, nurses, ER ICU drs. It was all such a blur, it was all as nightmare I thought . They got her into an MRI right away and it did show she had a golf ball mass on her right side of her brain. They didn't think it was cancer The next day they scheduled her surgery to remove the mass and the surgeon said it wouldn't be a long procedure. It took them 4 hours and 2 pints of blood later. The surgeon was able to remove the whole tumor and said it didn't look cancerous but they are still sending it out to get it tested. She was put into ICU to recover , the drs told us that he wasn't sure if she would have any complications from surgery which could include paralyzed from any part of her body. So the next few hours were crucial. The drs made us leave her to get a break . I told them to call us as soon as she makes any movement. 15 mins after we left the nurse called us and said she moved but no only one hand or arm but both arms and legs. We ran back to her room crying. Our baby is going to be ok. Then later on that night she started showing signs of seizure activity. That hooked her up to an EEG machine for several hours. After they removed her tumor they put in an external drain in to drain out all the fluid from her head. She had hydrocephalus due to the tumor blocking her natural process of the spinal fluid going through your body. The drain they put in we couldn't hold her for a few days and then we we could it was only 30 mins a day. We got the tumor results back two days later.. We found out my baby had brain cancer and it was a rare form called choroid plexus carcinoma. She was only the 5th child that was dx and treated at the hospital. The other 4 cases are in remission and doing well her dr said. But he said it's a very aggressive tumor and she is the youngest to have gotten it. He said we will do everything we can to save her but it might not be enough. He then began to tell us that she also has cancer cells in her spinal fluid and tiny tumors growing on her spine. She immediately had a line put in and began high dose chemo. After 3 cycles of chemo she had a shunt put in . We took her home after 7 long weeks of inpatient chemo in the ICU. She continued to get high dose inpatient chemo every two weeks until it was 11 cycles later. She had spinal taps and MRI every month. After just 3 cycles her cancer was gone. So after 11 cycles of chemo , two brain surgeries, numerous scans, spinal taps and 30 inpatient stays. On October 4 2011 just after a month she turned 1 the drs put her in remission. She continued to have MRI and spinal taps every 3 months everything was looking good until her 3rd scan that put her at 9 months cancer free. So on August 30 2012 when I was 7.5 months pregnant with her sister Avah We received a call from her dr that Madison had two new brain tumors and we had to come in and get a port put in right and start outpatient chemo right away. She began outpatient chemo on her second birthday September 4 2012. She did not handle it well at all ,she lost weight and was sick all the time. They did another MRI and spinal tap and the tumor was growing and now had it in her spinal fluid. The chemo wasn't working so they switched to another treatment. She began being inpatient every two weeks again we did that for over a year and the tumors remained stable but now had a spot on her spine. So we decided to take her to boston for a second opinion. He decided to work with our dr here in michigan so she could stay her to get treatment. So we continued on another treatment plan and nothing was shrinking them so on September 11 2013 Madison had another brain surgery to remove one of the tumors. They successfully got one but the other one they can't remove with out hurting her in some way. So they sent the tumor out for a tumor Marker test that would hopefully show us the best treatment to cure her. So on September 30 2013 she started into a clinical trial that is our last option for a cure. She continues to have MRI, spinal tap every 3 months . She turned 4 on September 4th.So far her tumors are stable on this trial. She had her last MRI and spinal tap August 26 and again her tumor is stable. So her drs decided to keep her on this treatment for another 6 months with MRI's and spinal taps every 3 months. In 6 months her drs will discuss if they will keep her on this treatment but the downside is it will possibly cause liver and kidney failure. Please pray for a miracle for our baby girl. Seeing how much she has been through in just her short 4 years she is my true hero. She continues to smile and continues to beat the odds. Thank you Tracy Pagel

The Childhood Cancer Ripple Effect

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