Jaimie's Story: Part Three

"On May 8^th 2013, Jaimie had her 4 month MRI and with much sadness – a re-occurrence of the tumor showed up in that MRI.  We met with Dr. Tobias who told us that the tumor was very small (the size of a match head) but it had to come out.  After a couple of hours (in surgery) they called our cell phones to tell us that they were having trouble finding the tumor.  They were taking pieces of, what they thought was the tumor and were sending it to pathology for results and they came back that it was not the tumor.  After 8 hours of being in surgery, our Surgeon, Dr. Tobias came up to us and apologized – he said he couldn’t find the tumor.  Then explained to us how there is a GPS for the brain and it gets him close to the area of the brain where the tumor is, but once they open her up – the GPS for the brain no longer works as the brain is flooded with blood.  While he was speaking to us Jaimie was in having a post operative MRI to see if the tumor was still there. What started out as a small match head size tumor, came back after surgery as this long line. The tumor may have been squished during surgery.  While speaking to Dr. Tobias, they wheeled Jaimie up to the ICU unit from her surgery and MRI.  I fell to the ground and Dan nearly collapsed as well.  My beautiful daughter was once again had tubes coming out of her and her head was wrapped in bandages.  For some reason I think she looked worse this time.  Our hearts were broken.  The thought of my Jaimie having to go through surgery again was terrifying.  Jaimie remained intubated for the next almost 24 hours.  Dan and I sat around the bed just praying and crying not knowing what to do. We were then discharged on her 6^th day.  Home we went for her to heal and we returned two weeks later for Jaimie to have another MRI.  

This MRI showed that the tumor was in fact still there and none of it had been removed.  Dr. Tobias told us we had two choices.  Our first choice was to have Dr. Tobias do the surgery again – he said he was 95% sure he would be able to remove the tumor this time, because from the MRI he could tell that it was right next to the cavity where he had just done his work.  His concern was that if he could not find it, he would have to close Jaimie up, wheel her down to do an MRI (another location in the hospital) get the results from the MRI and wheel her back into surgery and open her up again…Our second option, was to fly to Memphis, TN to a hospital called LeBonheur.  They are affiliated with St. Judes.  The Dr. that trained our Dr. Tobias was in LeBonheur hospital and they also had an MRI in the operating room so that if he had a problem finding the tumor they could use the MRI right in the operating room.  Dr. Tobias said he was 98% sure that Dr. Boop (Dr. Tobias trainor) could get the tumor.  Dan wanted to stay at Maria Fareri as there was a strong sense of comfort with our hospital.  The thought of traveling to Memphis was too much for Dan to handle.  I felt that the 3% difference in odds of getting the tumor out was good enough for me to go to Memphis.  We were terrified – after much discussion, I looked at Dr. Tobias and said…… ”what would you do if it was your daughter?”  Dr. Tobias said he would go to Memphis.  That sealed the deal for me.  1 week later we were on a plane to Memphis, TN to meet Dr. Boop."  

Jaimie's Story: Part Two

“Jaimie has a mass on her brain and you need to get to the hospital right away.”  We were floored – I just remember sitting on the floor in hysterics with my poor Jaimie looking at me like…what the heck is going on.  Dan was a bit calmer than I was and worked with the office to get paperwork and a CD of her Cat Scan to take with us to the hospital.  Not sure how we did it, but we drove across the street to the hospital (luckily was only across the street) and Jaimie was immediately taken into the ER where there were Dr’s and nurses surrounding us.  Dan and I paced and cried – They told us they they could not treat us at this hospital and they had an ambulance coming to take Jaimie to Maria Fareri Children’s Hospital where they could treat her.  It felt like forever before the ambulance came. I tried so hard to keep it together on the ride to Maria Fareri so as not to scare my Jaimie.  That was the most difficult role I ever had to play.  We finally arrived at Maria Fareri where we were rushed into the ER.  I could not even keep it together to be with my little girl – we were talking to ER personnel and our heads were spinning with our new news.  Jaimie was sent in for an MRI to confirm the diagnosis.

The next morning after a very sleepless night – Dr. Tobias came up to us and said – he could take her in for surgery this morning – he had everyone in place.  Dan and I looked at each other in complete fear and said yes.  I was terrified but Dan said it has to be done and better sooner than later.  An hour and half later Jaimie was wheeled into her 14 hour surgery to remove this tumor from her brain.  At 2:00 am the surgeon came up to the room and said he had successfully removed her tumor and they were closing her up and then she was going to go for an MRI to confirm that the tumor was removed 100% and after that she would be back to the room.  

A little while later my beautiful girl was wheeled down the hall to us with all sorts of tubes coming out of her – it was the scariest sight Dan and I had ever seen.  They brought her into the room and Dan completely lost it – I was just so happy to see her – she had a huge bandage on her head and was hooked up to all sorts of monitors.  The rest of the evening was spent with the nurses surrounding Jaimie and monitoring her every move.  They were slowly taking her off the ventilator to let her breathe on her own. Jaimie spent the next 5 days in the Pediatric ICU unit also known as the PICU. She was out of bed walking the day after surgery.   She was truly amazing in her recovery but had a little bit of depression as well.  After 5 days in the ICU we were finally moved to a regular room where Jaimie proceeded to become stronger and stronger – Her appetite was not very good and she lost quite a bit of weight.  Finally 12 days after arriving to Maria Fareri Hospital, Jaimie was discharged on January 15^th."

Now, this isn't the end of her story, but it's a start. There's much more to come. This is just a glance into their world - one that we should all now have a greater respect for. This family is heroic, no doubt about that. Jaimie is the toughest, most charismatic, glowing little girl we have ever met. This story hopefully will go on to educate you, provide you with new respect for life, and allow your heart to be opened up to the strongest girl in the world.

Jaimie's Story: Part One

I know you all are probably curious about Jaimie, wondering what happened to her and what her condition is now. Even being apart of her "soccer family," we are still curious as well. Unlike you all, we had known some general information about her cancer and tumor for some time now, but like you, we didn't really know much else. So, in order to fully share Jaimie's story to the best of our ability, we decided to ask the people that were there through it all to tell us. Here's what Jaimie's parents, Dan and Debbie Ferretti, had to say: 

" The morning of January 3^rd 2012, Jaimie woke up and complained of a headache.. we thought she maybe had back to school “itis”.  Knowing that Jaimie typically doesn’t fake illness – I told her I would take her to work with me and on our way home we could stop at the doctor.  When Dr. Puntillo arrived, she immediately brought us into the exam room and tested Jaimie for strep throat.  She did a quick exam of her and then sent us across the hall to have blood work done.  While having the blood work done, Dr. Puntillo’s nurse, Donna came across the hall and said…You have to go have a CAT Scan done down in Mt. Kisco (which is about 20 minutes away) she said you have to go now – don’t waste any time.  My heart sank and I began to shake.  I text dan…. "OMG Jaimie has to have a CAT Scan, meet me in Mt. Kisco”- Needless to say I was freaked out and do not even remember driving to the Cat Scan office.  I arrived safely somehow and waited for Dan to arrive.  Dan showed up about 20 minutes later.  At this time I was unconsoleable.  I was shaking and crying and couldn’t really get it together.  They finally called our name – Jaimie went into the dressing room and put on a gown.  Dan and I waited outside the room for her to come out – She came out of the room just a few minutes later and the technician went passed us and went into his office a closed the door.  Moments later the receptionist called us and said the Dr. Puntillo was on the phone.  My heart was racing as I grabbed the phone from her…she said “Debbie, you aren’t alone are you”?  I collapsed on the floor and handed the phone to Dan who then received the news from Dr. Puntillo."

To be continued...

Live in the moment, play in the moment.

The Beginning

On September 9th, 2012 the Marist Women's Soccer Team adopted Jaimie Ferretti through the Friends of Jaclyn Foundation. The Marist Athletic Department held an induction ceremony in her honor. In front of hundreds of fans, friends, and family, Jaimie Ferretti was proudly welcomed into the Marist Women's Soccer family.  In that moment, our lives were changed forever. Not only we were playing for ourselves as a team, or as individuals, we were now playing for an eleven year old girl with a pediatric brain tumor.

This was the first day we met Jaimie and our hearts stopped when she stepped out onto the field. She began by hiding behind her mother, scared to reveal herself to us, clearly overwhelmed by being the center of attention in a positive way for once. When her name was announced over the loudspeaker, she was forced to step out from behind her mom and walk over to her new team and family. Our jaws dropped when we saw her for the first time. Jaimie is beautiful. She is small for an eleven year old, and has blonde hair and blue eyes. We were just as nervous as she was. We were now accountable for an eleven year old girl's hopes and dreams and we didn't want to let her down. We were scared that we wouldn't be good enough for her, or make her feel comfortable, or live up to what she hoped we'd be. But, the moment Jaimie began embracing everyone on our team, we could feel our nerves fade just as hers seemed to as well. We had an instant connection - one that can't be put into words. That was the start of a new beginning, not only for the team, not only for our coaches, but for Jaimie and the Ferretti family. We all had hope.

Live in the moment. Play in the moment.

Welcome!

Hello, all! This is Amanda Epstein and Rycke Guiney reporting from Marist College. This blog is part of our senior capping assignment, but this topic means a whole lot more to us than just a project. This is the story of our Friends of Jaclyn adoptee: Jaimie Ferretti. For those of you who don't know, Friends of Jaclyn (FOJ) is a not for profit organization that pairs up children with pediatric brain tumors with college and high school sports teams.

The Marist Women's Soccer Team adopted Jaimie through this program a year and a half ago. Our hope through this blog is to not only generate awareness for the foundation, but to show the world how Jaimie Ferretti changed our lives. These children need hope, and sports teams across the nation are able to give them something to believe in. Our goal is to start a movement. These kids need a voice and their stories deserve to be shared. With the help of FOJ founder, Jaclyn Murphy, we hope to encourage all teams to adopt, and go on to tell the world how their lives were changed by one extraordinary child. Stay tuned to hear more from us about our hero, Jaimie.

Live in the moment, play in the moment.