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."