Saturday, October 24, 2009

The Real Journey Begins

I debated if and when I would write this next post, but I felt this morning that it is something that many who have followed this blog faithfully would want to know.  Jared went in for his checkup MRI on Wednesday morning and in answer to prayers he came out of anesthesia the best he has done yet.  He came right out and downed two bowls of cereal and was quickly back into things.  The poor kid was as hungry as a horse.  It seams that all he did the rest of the morning was eat.

A few hours later the doctors returned to our room to discuss the images.  From the discussion it was very unclear how the tumor had changed exactly.  We were told that it was bigger and they offered to take us to the radiologist to discuss the images while looking at them.  I don't think I will ever be able to get those images out of my mind.  When people say that pictures are worth a thousand words it is more true now than it has ever been.  The tumor was all over in his head and now extended all the way down the cervical spine to the collar bone.  It is unsure whether or not the tumor has metastasized anywhere beyond the collar bone due to lack of imaging beyond that point.  The brain stem was pushed over like a shepherds crook and it was very apparent that this tumor was not stabilized as we had hoped.  Each glance at the extending parts of the tumor quickly became more than we could handle at the moment.

We sat down with a group of PCMC physicians in which we discussed ways of extending Jared's life.  Discussions were no longer of cures and long term solutions, but of what could be done to prolong the inevitable.  Upon leaving the hospital, that afternoon we quickly overnighted all images to Boston.  We wanted Dr. Liebsch to tell us his thoughts before we accepted anything.  We spoke with him Thursday night and our fears were confirmed.  He did offer us a very rigorous radiation treatment that did not guarantee Jared any recovery from the tumor.  He simply said that this tumor "is in a league of its own" based on how aggressive it is.  While he could not guarantee any recovery, he did let us know that Jared would be severely impaired in many ways as a result of the radiation.  While we did not let Dr. Liebsch know immediately we felt that there was no way we would submit Jared to all of this.  I can say that I am so very grateful for the honesty and candidness of Dr. Liebsch.  He truly is an amazing doctor and we know that he was placed in our path for many reasons that I will not discuss.  Dr. Thiele from Boston has become one of Jared's biggest fans and went above and beyond her responsibilities as a physician to be there for us and our son.  We will be forever grateful for the love and care that she has displayed.

My heart is so incredibly full to say that we have decided to enjoy the remainder of our sons life without imposing any further treatments.  Many might think, "go for broke", but I can assure you that this is not what we are to do for Jared.  Jared is a very special child and we are anxious to be able to relish the time with him. 

I just cannot say enough about how absolutely grateful I am to have the blessings promised to us in the temple.  These are the most cherished, hopeful and inspiring promises that have supported us in all of this.  We have ached and we have cried, but our faith in our lasting purpose of this life will continue to buoy us up.  We thank you for your friendship, love and support and have felt your sincere prayers in our behalf.  Jared is so very loved and we hopefully have many laughs, stories and Legos to build before our time is cut short.  May the Lord bless you all for your charitable hearts and faith.

Tuesday, October 20, 2009

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.

Monday, October 5, 2009

JV Team

We had a great weekend as we cheered on family members who ran a marathon to raise money for the Chordoma Foundation.  We were surprised with shirts with "JV Team" written on the front in the form of the superman symbol along with "JV team" bracelets.  All the support that we have had through all of this has been amazing!  When Jared saw the shirts and the bracelets his face just lit up!  It was a great day!  Several people asked, "what's a chordoma?" at the race.  So we felt we were able to raise an awareness and also raise quite an amount to go towards research.  Thank you so much to everyone for your generous hearts.  And good job runners!  Go JV Team!

Jared continues to have his ups and downs.  This past weekend was more of one of his downs, so that was hard to see - especially at such a fun event in his honor.  It just breaks your heart.  But after he woke up today from a good nap he seemed in much better spirits so that was good to see after such a hard couple of days.  His Rapamycin level was taken last week and is in the range that the doctors wanted so that is good.  It's just hard to know what exactly is going on inside of his body because he is so up and down feeling well and not feeling well.  One of the best memories of this weekend was jammin in the car to the song, "Video Killed the Radio Star" Jared got pretty into it - it was fun to see.  :)  

We are doing another order of shirts because many people have expressed interest in buying them.  If you are interested just let us know by Oct. 20th.  They are $5.00 for child and $6.25 for adult sizes.  We also have lots of bracelets to pass out as well. 

Thanks everyone for your love and support.  We say it so much on this blog but we hope it never sounds trite - we mean it.  We have felt everyone's love and strength so much and it has helped us greatly.  Thank you.