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."