The Rollercoaster

Well, there is never a dull moment around here.  We find ourselves sitting in another hospital room here at Primary Children's Medical Center.  Oh, I don't want to jump to the end of the story so let me start where we last left off.

Upon our return home from our trip to St. George, Jaime discovered a lump on the left side of Jared's neck.  The lump itself is not extremely noticeable and may have been there for a little while without us seeing it.  Worried and concerned we set up an appointment with Dr. Verma at PCMC.  She was very kind and appeared concerned, but was very calming.  We really appreciated her calming demeanor during that visit as we had a family vacation planned for the following week that the our kids have been talking about for weeks.

We had been so generously given a free paid for trip to Disney World for a full week and we were really hoping that Jared's condition would not prevent him from going.  Dr. Verma was aware of our trip and expressed the potential causes of the lump, but for the moment dismissed it as an inflamed lymph node resulting from an ear infection.  She prescribed a pretty hefty antibiotic dose for the week and sent us on our way.  The plan was to see if the lump decreased in size, and if it did not, then his scheduled MRI would be moved even closer.

We had an absolute blast.  We went from park to park doing just about all the rides and shows that we could possibly do in a weeks time.  We were somewhat limited in the rides due to Bradleys vertically challenged body and Jared's neck instability.  Really the only ride that Jared was really disappointed that he could not ride was the Star Wars ride at Universal Studios. We wore our JV Team shirts 3 out of the 5 days we were there and we had just great love and support from so many people.  Even complete strangers offered their faith and prayers in Jared's behalf.  I ran into the same pastor and his wife twice on the bus ride home from the parks and he mentioned his willingness to pray for him and arrange to have his entire network of churches do the same.  It is constantly eye opening to see the amount of genuine concern and love from so many people.  Someone we spoke to in Disney World even took the time, upon returning home, to look him up on the Chordoma Foundation website and comment.  What a blessing to see this overwhelming support.

While in Universal Studios, we escaped the sudden rain storm and watched the Indiana Jones stunt show.  The kids were captivated.  Poor Gabrielle kept gasping and covering her eyes as she watched it all.  She thought she was seeing the real thing.  After the show the Indiana stunt double took pictures and signed autographs with the kids in the audience.  Not quite Harrison Ford, but the Jared wanted a picture with him.  After Indie noticed the shirts we all had on he asked about their meaning.  Immediately after we explained why we all had them he asked us to come speak to him after he was done with the other kids.  He came over, knelt down and offered his "authentic" Indiana Jones hat to Jared.  Needless to say, Jared was an immediate Indiana Jones fan.

Disney World was truly magical for us all.  We laughed and we cried as we spent the week with our kids.  We were all in tears as we watched Jessie from Toy Story bend over and give Jared a big hug during one of the Celebrate parades.  Poor grandpa could barely keep the camera still while filming it all.  It really was such an exciting week.  We are so grateful to have had those memories together especially considering the timing of everything.

Well, we were quickly placed in reality.  The lump in his neck did not decrease and upon returning to the Clinic today the doctor expressed her true concern.  She felt that it was tumor related.  She was considerate of our desires to go spend the week worry free and for the most part we were able to do just that.  The MRI's that had been slated for early November were quickly moved to tomorrow morning.  Oh, how anxious we are to see what is going on inside our boy.  We are anxious and nervous all at the same time.  Our hearts are somewhat somber and drained at the moment, but our faith in our Savior Jesus Christ and a loving plan of salvation will continue to be our anchor through all of this.  Thanks for your prayers and faith.  May the Lord bless Jared with a miracle, a miracle that suits his needs and not ours.