Second Annual FOJ Walk On The Walkway Over the Hudson

On Sunday, September 29th, Jaclyn Murphy hosted the second annual Friends of Jaclyn Walk over the Walkway on The Hudson. The purpose of the walk is to honor and commemorate the children that have lost their lives due to pediatric brain tumors. Along the walkway rails that day were 84 paper-made doves with the names of the children who have passed due to their condition that were members of the Friends of Jaclyn foundation dating back to 2007. Being so close to Marist, the student community came together with many schools in the nearby area who also participate in the program. Jaclyn led the walk, closely followed by her parents and brother - and then us. The Marist Women's Soccer team followed them closely to support Jaimie in the best way we could. We taped "I walk for: Jaimie" on all of our backs, proudly showing the world that she was our girl. The Marist Men's Football team walked close behind us, supporting Jaimie's brother Daniel. This event is an amazing way to bring people together and share perspectives from different collegiate teams that participate in the foundation. It was a great atmosphere to be apart of, and such a positive environment focusing on overcoming adversity and living in the moment.

Player Interviews

Hi guys! We've told you a lot about Jaimie and her family so far, but we've never really given you a perspective of all this from our teammates. So, this week, we interviewed a few of our younger players on the team to see how having Jaimie has impacted them. 

First is sophomore, Jessica Fanelli:

"Having Jaimie as our adoptee went above and beyond all expectations. Not only did Jaimie allow us in her family, but she brought the Marist Women's soccer team closer as a family. She was an inspiration to each and every one of us on the team and just like she looked up to all of us, I looked up to her for being so strong throughout all she has been through. The adoption made me realize how fortunate I am and how children like Jaimie would do anything to be running around on a soccer field. Although our season has come to an end, Jaimie as a member of the team gave us the push we needed to make it as far as we did. I think the Friends of Jaclyn adoption process should be spread to more schools and teams because not only does it brightens the life of a child, but the strength Jaimie had was contagious and inspired the team to prosper throughout our season."

Junior, Jamie Strumwasser:

"Having Jaimie as an adoptee has opened my eyes and helped me realize that my everyday issues are not as bad as I originally thought they were. Having Jaimie in my life has forced me to understand that getting into an argument with my friend or maybe not getting the grade I wanted to get on my spanish test is nothing compared to the struggles Jaimie and her family faces each and every day. To see Jaimie with a smile while she goes through some of the hardest things a child can, is breathtaking. She is undergoing one of the toughest situations a child can, and for her to be able to set that aside and be able to experience life is astonishing. Jaimie has helped me realize that there is so much more to life then just training or doing homework. Life isn’t about waiting for the storm to pass, its about learning to dance in the rain. The happiest people do not have the best of everything but they make the best of everything they have."

Sophomore, Megan McEnroe:

"Adopting Jaimie into our Marist Women’s Soccer family has played a major impact on us as a team and as well as myself personally. As a team I think adopting Jaimie showed us how important family really is. The smiles on Jaimie’s face when she is around us are quite amazing and really prove that we make a difference in her life just by our presence. The support and comfort we show her reminds us how we should always treat each the same way other no matter what the circumstance is. Personally, adopting Jaimie has showed me to never give up on a dream because you never know when it will be taken away. Bringing Jaimie into the family was definitely a positive experience and I am so glad I had the opportunity to be apart of it."

Sophomore, Amanda Bauza:

"Being a part of the Friends of Jaclyn Foundation wasn’t just about doing something good for the community, having Jaimie was more than just a good deed. From the start Jaimie fit right in to our MWS family and you could just see the smile light up not only on her face but all of ours every time she came in to our locker room and attended games. Her support helped us win many games on our home turf and in a sense I believe that by adopting Jaimie it made us all come together and not only play for her but win for her. Adopting Jaimie made me realize how fortunate I am in this life and how I want to help kids like Jaimie know that even if they are facing challenges in their life at a such age they can still be happy and know that people love them no matter what. I honestly would recommend every collegiate team to consider this foundation because for me, personally, it was a great experience."

Junior, Andrea Wicks:

"Adopting Jaimie Ferretti into our Marist Women’s Soccer family has created a spark, that has brought us closer together as a team. She reminds us to be selfless and to work for others because even when we get to the point where we’re tired of playing, there are others who don’t have the opportunity to. Jaimie became the heart of the team, so when even things turned bad, we always had a smiling face to look at, and pick ourselves back up again. No one could deny her smile even in the worst of times. Jaimie’s a sign of hope and happiness that unites our team as one."

And to think, this is only a fraction of our team. Just imagine what everyone has to say about our brave little girl. For any other collegiate teams reading this, definitely start a movement and adopt a child of your own! It's worth every minute.

Live in the moment. Play in the moment.

Happy Thanksgiving!

Happy belated Thanksgiving to all! To keep you posted on Jaimie - for Thanksgiving, Jaimie and her family chose to go out to dinner to celebrate what they were thankful for. Jaimie decided she wanted to wear a dress a few days prior to the day so her and her mom went shopping to pick out the perfect one. Jaimie found the one she wanted to wear and was very excited leading up to the days to Thanksgiving. On Thanksgiving, Jaimie decided to wake up a little bit earlier than usual. Jaimie got up, showered, did her hair and put her dress on and she looked beautiful. Debbie said that she has never seen her daughter this excited to get formally dressed for an occasion. Jaimie and Daniel both picked out their outfits and were both very excited to be celebrating Thanksgiving with their family.  The Ferreti family wishes everyone a Happy Thanksgiving!! They are the perfect example of a family who never takes anything for granted, and truly appreciates what they have in life. Here’s a picture of Jaimie and Daniel before going to dinner with their family:

Live in the moment. Play in the moment.

CONGRATS JAIMIE!

Hi guys! Sorry for the excessive excitement... We couldn't wait until tomorrow to share the good news with you all. This update was recently shared with us through Jaimie's mom's Facebook!

And here's Jaimie's point of view..... 

Congrats girl, we love you!!
Live in the moment. Play in the moment.

Marist Football's Senior Day: Jaimie Edition

Last year, Jaimie's brother Daniel was adopted by the Marist Football Team through the "Safe On The Sidelines Program" that FOJ offers. This program acts as a support system for the siblings of children with Pediatric Brain Tumors. The healthy child may feel neglected or confused during this process, so they too are granted the opportunity to be adopted by a college sports team. Luckily, the Ferretti siblings got to stay together when two Marist teams adopted them!

Today, November 16th, was the Marist Football's last home game of the season. That meant it was senior day. That also meant that the team needed to win this game in order to become Co-Pioneer League Champions. The Marist Women's Soccer Team and Jaimie of course, tagged along to support our fellow family members: the Marist Football Team and Daniel! The Ferretti family and a few friends arrived an hour before the game to spend some quality time with us. We brought them over to our apartment and hung out, snapping a few adorable videos of Jaimie. I attached one below.

Jaimie hadn't been doing so well the past few weeks, so we thought a trip to campus would put a smile on her face. Luckily, we were right. She is definitely a diva to say the least. We spent an amazing three hours at the game! Jaimie surprisingly sat still (for the most part) for the majority of the game. With her endless supply of energy, she could hardly resist the urge to roll down some hills and sprint up the stadium stairs. As the game went on, due to the positive energy surrounding the stadium, Marist Football was dominating. Jaimie and Daniel stood on the sidelines with team when the final buzzer sounded, and were apart of the school's first football championship. It was an unbelievable experience for everyone involved. As usual, I think Jaimie brightened our day almost as much as we brightened hers. And what better way to end an amazing day than a pizza party!?

Check out all of the pictures we took from this historic occasion by clicking here!  https://plus.google.com/photos/106159143004910139111/albums/5947016552396134513?authkey=CLTJ0vzBsLLmdg

Live in the moment. Play in the moment.

Snowball Gala 2013

Jaclyn (left) and Jaimie (right) at the Gala.

On Sunday, February 24th 2013, the Friends of Jaclyn Foundation hosted their annual "Snowball Gala" to honor and celebrate the participants of the FOJ program. The event was held at The Mansion of Colonial Terrace in Westchester, and Rycke was lucky enough to attend along with Jaimie and a few members of the Marist Women's Soccer team. Jaimie wore this adorable navy blue dress that was so perfect for the occasion. We also spent some time with founder, Jaclyn Murphy, who looked super cute as well. It was a very educational and eye-opening experience, and made us all appreciate the foundation even more. There were representatives from multiple colleges across the region in attendance with their adoptee. The purpose of the event was to bring coaches, players, and adoptees from across the nation together. The Gala consisted of multiple speakers, a lovely dinner, documentaries, and a recognition ceremony for all current participants, as well those who have passed away. It was very emotional for everyone. We were all able to empathize with other team's experiences that were brought up during the event, because we had gone through such similar things with Jaimie. All in all, it was an amazing day - one that Jaimie will probably remember forever, as will we. She got to be a princess for a night. The next Gala takes place on March 29th 2014, so mark your calendars and join in the movement!

Live in the moment. Play in the moment.

What Is An Ependymoma?

As we revealed in our last post, Jaimie has an Ependymoma. But, what exactly does that mean? When we were first told about her diagnosis, we didn't even know where to begin. After researching though, we found out much more about her cancer. Childhood Ependymoma is a disease in which cancer cells form in the tissues of the brain or spinal cord. Jaimie's tumor was in her brain. Ependymomas are actually the third most common type of brain tumor in children, but are relatively rare - with about 200 cases diagnosed in children each year in the United States. Some symptoms of an ependymoma are:

• Headache
• Vision Loss
• Vomiting
• Drowsiness 
• Loss of Balance

After seeing an Ependymoma on a CT Scan or MRI, the tumor can be treated by surgery, but there are many factors that affect whether or not recovery is possible. Luckily, Jaimie's tumor was caught early and did not spread to other parts of the body. Since her tumor was completely removed, she is currently cancer free! Unfortunately, there is no guarantee that the tumor will not recur again. You can read more about Childhood Ependymoma by clicking here: Cancer.gov or by visiting Childhoodbraintumor.org.

Jaimie's Story: Part Four - Present

"We arrived in Memphis on Saturday and drove to the Fedex House – where we would be staying for an indefinite amount of time.  Fedex house is like a Ronald McDonald house where patients families get to stay for free.  It was a beautiful place and we were very lucky to be there. At this point Jaimie knew why we had come to Memphis and once again handled it like a champ. Surgery was scheduled for 11:00 am (Wednesday morning.)  My heart was breaking for my brave little girl. I once again said good bye to my little girl for what was going to be another 3 to 4 hours of surgery.  Dan went with Jaimie into the operating room as only one of us could.  I thought it best he go with her because I was not in good shape.  I sat outside the operating room in a puddle of tears, when Dr. Boop walked by as he was getting ready to go into the operating room and stopped.  He grabbed me and hugged me for a good long time and said to me “I will take care of her like she was my own”.  Shortly after Dan came out of the operating room and the two of us were off to go wait in Jaimie’s room.  The Dr. said it should be a 3-4 hour surgery, and he would have someone call us every hour to keep us updated.  At 4:20 as promised the phone range for what we thought was an update….to our surprise they said the tumor was out and Jaimie was being closed up. The surgery went so well she did not even have to move to an ICU room afterwards.  Dr. Boop had successfully removed the tumor in under 1 hour.  Dan and I just broke down in tears and hugged Dr. Boop.  Dan and I never left the hospital and spent a restless night with Jaimie.

The next morning Jaimie was feeling really good.  So good that they told us she could be discharged on Friday.  Wow….two days after brain surgery she was out!  Friday morning came and they said she was good to go..  She was discharged and our flight was scheduled to leave on Sunday, but I was able to move our flights and we came home Saturday. Monday came and we went to see Dr. Tobias and he was very pleased with Jaimie’s recovery. On July 15^th we met our Radiation Oncologist, Dr. Chitti.  He explained the treatment plan for Jaimie and asked we come to for a prep visit in two days.  We had no idea what to expect. When we arrived, they laid Jaimie on a table.  The technician then took a piece of hard plastic and placed it in hot water, which made the plastic moldable.  The technician then molded the plastic to the back of Jaimie’s head as it cooled it became hard.  They did the same process for Jaimie’s face – the plastic covered everything but her mouth and chin.  Needless to say Jaimie was terrified.  Once both pieces had cooled they clamped them together on Jaimie’s face.  Jaimie cried in pain…Dan and I cried more. The mask is for radiation – it has to be tight to ensure that Jaimie doesn’t move and that they radiate the correct area.  Jaimie got off the table and looked at me and said…mom that is the first time I cried through all of this…and you know what….she was right.  

Dan and I were concerned about the next 33 treatments we had ahead of us with this mask on Jaimie’s face – imagine being almost 9 years old and having a mask clamped to your head so tight that it left marks on your face and not being able to see anything that was going on around you…Freaky right!  Jaimie was given a valium and we brought her down to radiation and she was able to get through the 5 minute treatment without anesthesia.  On the third day of radiation – Jaimie announced she no longer wanted to take the valium and do it on her own.  We were skeptical, as were the technician, but Jaimie did it.  And for the next 30 days Jaimie went into radiation without any medication.  Radiation consisted of Jaimie laying on a table and the technician’s putting the very tight mask on her and clamping it tight and then clamping it to the table so she couldn’t move.  They technicians would line her up so that she was only radiated in the area needed.  We would all leave the room and close the door and Jaimie would be in the radiation room alone. Jaimie completed her 33 treatments and on September 3^rd celebrated her last treatment.  Today – Jaimie is happy and healthy and acting like a normal 9 year old.  Jaimie’s next course of action is to resume her every three month MRI’s to make sure that this tumor which by the way is an Ependymoma, does not return."

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.