Jared's Journey Begins Anew

Well, the dreaded post has arrived and our hearts ache to write it, but we want to pay this last tribute to our son.  Jared passed away yesterday morning at 3:45 AM as a result of complications from his tumor.  Early Sunday morning, after a week of spending time with family through thanksgiving and Bradley's birthday, Jared awoke complaining of breathing difficulties, which sounded much like a child does who has the croup.  This was the beginning of the last 25 hours of his life.  These hours seemed so incredibly long in the moment, but we are so grateful that Jared was able to pass so quickly.  He did struggle at times, but eventually stopped breathing Monday morning in his own bed with Jaime and I by his side.  There are not words to describe the feelings that were felt.  I can honestly say that there has been nothing so heart wrenching and so painful as this moment.  We lived knowing of this time for weeks now, but the void that is left in our home is irreplaceable.  His physical presence in our home will be forever missed and remembered.  Jared was much more than a super hero to us.  Jared has paved our way of hope to a loving God and we will be eternally grateful for his special presence in our lives.

Jared was a very fun loving kid with a fantastic imagination.  He loved to create new superheroes and would list all of the many powers that these heros would have.  He loved his brother and sister so dearly.  He would smile and laugh at their many jokes and just loved to be around them.  He and Gabrielle were especially close and were truly the best of friends. He wrote a note to Bradley for his birthday just days before his passing telling him that he was his best side kick.  Bradley and Gabrielle are truly better for having the brother that they do.  Jared loves his mother and their bond will forever be a tribute to both Jaime and Jared.  He loved to  be held by Jaime and found comfort as he would cry in her arms.  He loved to hear her sing and would always request a certain song from her that has become a cherished song in our home.  The song is entitled, "Light on a Hill".  Jared has become a light on a hill to each one of us.  Jared will live on in all of us and as time progresses we will manage the challenges of life better and with more control, but Jared's memory will never dwindle.  He was loved by all and is truly a special son of God.

Jared's services will be held on Friday at 11:00 AM at our chapel in Centerville.  There will be a viewing the night before at Russon Brothers Mortuary on Main Street in Bountiful from 6-8:00 PM.  Another viewing will be held at the chapel prior to the services from 9:30-10:40 AM.  Our chapel is located at 270 N. 300 E. in Centerville.  In lieu of flowers, please donate to the Chordoma Foundation.  The link to Jared's donation page can be found as a link on this blog.

We love you all.  We have been extremely blessed with such amazing people around us.  This challenge has brought forth some the most cherished experiences that life can afford and we are forever grateful for them.  Our hearts are pained, but we are eternally grateful for the knowledge of life beyond this life as we know it.  It is our firm testimony that we will be with Jared again if we can but live a worthy life. God does live and his son Jesus is the Christ and has made this experience a sacred one with the knowledge of temple covenants and a resurrection to a perfected life as families.  We hope to make this a reality and are so grateful for your prayers and examples to each of us.  May Jared always be remembered for the choice and noble son of God that he is.  We love you all, thank you.

Jared Vance - Hero Day

We feel so touched as Jared's elementary school is honoring Jared the week after Thanksgiving as they hold a school wide "Jared Vance - Hero Day"  in honor of Jared and his superhero status.  Every grade level in the school is doing a service project in honor of Jared.  What a neat thing to be honored and an even neater thing to honor someone by helping other people.  We feel so grateful to have such amazing support around us in our community.  We especially thank Mrs. Tonge and her class who started it all.

Here is a picture of our family at Jared's Make A Wish Celebration.  Jared has had a wonderful time putting together his legos . . . all of his lego creations have completely filled the donated bookcase that Make A Wish gave us and he still has about 10 boxes left!

Jared had a few really great days following his Make A Wish night, but has sort of been going a bit down hill since.  There is no doubt that he still has some good moments of Legos and Indiana Jones games, but he just seems to struggle for a good portion of the day.  That moment of struggle seems to be lingering a bit more throughout the day.  He has recently acquired a magic set and has proudly mastered a few of the tricks.  He still shows a great love for life while he is up and feeling well.  He fights hard and will always retain a super hero status in our family.

We hope to have a wonderful Thanksgiving week with a lot of family and cousins for Jared to be with.  Hopefully he will have more ups than downs.  Happy Thanksgiving everyone.

Tribute To Our Boy

For Jared's Make a Wish party we showed the following video.  What a fun night it was and what an amazing foundation.  Jared was extremely bashful, as many of you know, but he has not stopped assembling the Lego's since yesterday evening.  Thank you to all who nominated Jared for this sweet experience.  Amidst so much worry and concern we have sure been blessed with so many tender mercies along the way.

The video had to be broken into the two YouTube segments.  To view the videos please click on the links on the side of the blog listed under "Some Great Links". 

We will post more details when we have some more of the photos available.

Thank You Make A Wish for a memorable night with our boy.

Make A Wish

Jared was nominated and selected for the Make A Wish Program.  We went last night to the Wishing office and Jared was able to send his wish to the Wishing Wizard.  This is a picture of us in the Wishing Tower.  Jared's wish is to have fun with Legos.  Before we left last night they surprised Jared with several boxes of Legos for Jared even though his wish granting party isn't until next week.  It has been such a fun distraction for Jared.  He has been a busy Lego King working hard and putting together many legos (Indiana Jones legos, Starwars legos, etc.)  It really has been fun to see him so into it and forget about his sickness, even if it is just moments at a time.

We thought we would also post pictures of our Halloween - Jared was Ben 10 Alien Force from Cartoonnetwork, Gabrielle was a cute, "scary" witch, and Bradley dressed up as Batman.

These next two pictures are Andrew and Jared having fun waiting in a doctor's office.

 

Happy Autumn everyone.  We will post more next week all about Jared's wish granting party!

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.

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.

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.

 

"Guardedly Optimistic"

We wanted to write and share some good news. We've heard from one of our doctors from Boston this week. She asked our permission to use Jared's story/photos in a presentation this week that she is doing in Chicago and research grants that she is writing and referring to as the "Jared Project." In Boston, they have seen two more chordoma patients since Jared and have put them on Rapamycin as well because of Jared's tumor being stabilized, if not shrinking it. They remain "guardedly optimistic", which I love that phrase. We too don't want to get too high on the roller coaster but at the same it is so exciting and makes us feel so much hope! Jared has been so happy these past couple of days. He talks so much more and is much more animated. I told him all about the "Jared project" and he just got a big smile on his face and then said, "this has been the best year ever!" :) Can you believe it? I just laughed so hard and was just in shock that he would say such a thing . . . I just love that kid. He also said the closing prayer in his primary class on Sunday. When his teacher told me that - I just couldn't believe it! It just warmed my heart to hear that and to know that Jared would have the confidence and desire to do it - I love it!

We've been doing well and feel so blessed. Jared still has his discomforts and that is the hard part - the constant up and down emotions that come everyday, every week. We feel excitement, hope, then the worry, fear, then the excitement and hope, worry/fear, and so forth. But Jared does handle his pains very well. He is a strong, patient kid with such a goodness about him. All in all things look up.

Home 1 week!

We've been home for one week and in Jared's words, "it's been awesome!" The first weekend home felt so normal! Jared and Gabrielle slept over with cousins and it was just so great to see Jared as happy as he was. The first part of the week Jared and I met with his teacher and also his class. I talked to all the kids about Jared's summer and the things that have gone on. We brought pictures of Jared after surgery, etc. and it went really well. The kids in his class have been very helpful to Jared and I think in some cases too helpful. Jared is a shy kid to begin with and with all of this attention . . . I know he doesn't love it. We are really proud of him though - I know he doesn't feel well and yet he wants to be at school. He pushes himself . . . he had sort of a bad day yesterday with lots of headaches; when I checked on him mid-morning he said, "I want to make it to lunch." And after lunch Jared had me check on him again and he said, "I want to make it to 3rd recess." So he is being tough and we are proud of him. We just have to take everyday as it comes. We love his teacher and the office at his school - they have been so great with everything.

We meet with his new doctor that will be overseeing his care here at home on Monday. His Rapamycin dose was increased just before we left Boston so it will be good to get his blood work done, etc. All in all he seems the same - some days are better than others. Jared makes the most of his moments when he feels comfortable and is not having a headache!

A Bittersweet Moment

Well, I didn't quite expect the outcome of our meeting today with the physicians, but we definitely feel good about it all. We are coming home. We are excited to get a feeling of normalcy back into our lives. Hopefully this is the last of our cross country journeys for the year, but we hope it is not the last.

We sat down this afternoon with Dr's Liebsch, Friedmann and Thiele to discuss the outcome of the CT scans and their thoughts on the matter. Dr. Liebsch started by telling us that surgery is still not an option due to the size and location of the tumor and after reviewing the most recent images in greater detail, he does not believe that radiation is a worthwhile option. The tumor does not appear to have receded or advanced beyond its original envelope from when we arrived in Boston, but it does appear to be too large for effective radiation. It still extends down the cervical spine about 2/3 of the way and according to Dr. Liebsch it would require an enormous dose of radiation to handle it. The bottom line is, the risks far outweigh the benefits in Jared's case, and we all feel much more comfortable with this decision.

So, with surgery and radiation out, we are placing all bets on Rapamycin. All three physicians felt that it has been effective thus far and would prefer to get as much out of it as they can. Getting as much out of it means that we will return home for 3-4 months and be referred to a local neurologist and medical oncologist for local care. The physicians here, in Boston, will still maintain oversight of the whole treatment regime, but they will do it long distance. Around the first of next year, we will begin another cycle of imaging for Jared.

While the doctors are very optimistic, they are also very realistic. Before hauling our family out to Boston in 4 months they would like to have an MRI performed at Primary Children's Medical Center. This MRI will be very out of the ordinary, as compared to previous images. The MRI will only be done on the region from the neck to the bottom of the abdomen. They are concerned that it will metastasize. This is obviously the worst case scenario, but is also a very real scenario as others have suffered this similar fate. If this is our fate in 4 months, then Dr. Liebsch said that there really is nothing more to do except allow Jared to be as comfortable as possible.

The important thing now is that Jared is not at that stage and we will continue to provide him with the best fighting chance we can. If in 4 months the abdomen MRI comes back completely clean we will make our way to Boston a second time for a reevaluation of the tumor. What a great moment this would be, to arrive in Boston to find out the tumor has receded from its original size. Dr. Thiele was very optimistic that Rapamycin would be Jared's lifeline until another option is available. We have no other evidence otherwise at this moment and will embrace this wholeheartedly.

Another chapter of this journey is coming to an end and we thank you all for your love and support. Please continue to pray for our son. These upcoming 4 months may be the most important span of care that Jared will receive up to this point. We are uncertain about Jared's future at this moment, but we have definitely learned to appreciate the present a bit more. Prayers have been answered, aching and stressed hearts have been calmed and our faith in a loving God has been strengthened. God bless all of you, who are right there along with us. We love you and pray for the Lord to bless you in your lives for your unending love and support displayed to our family. We look forward to returning to our home Friday.

Reality Check

Well, what we had thought would be a routine CT scan turned out to be quite a bit different. This is not because of the results of the scan, because we do not know the results. The big difference came in all of the preparatory work that was associated with the scan. We arrived at the Proton Center at MGH and were informed that, even though they were still unsure if they would proceed immediately with radiation, they were still going to treat the CT scan as if they were preparing for proton beam treatments. Due to the sensitivity of the location of the tumor, they typically prepare a mask for the patient to wear. Now, if there was any doubt about Jared's super hero status, let it be known that he now has a mask that molds perfectly to his head. All it needs is a little color and an insignia and he is set.

Creating the mask would be a pretty frightening thing for a 7 year old, but to curb the fears they laid Jaime down on the bed first and went through the mask creation process. All the kids were able to try Jaime's mask on after it was complete and Jared actually appeared a bit excited. We hammed up the super hero thing pretty good for him and he seemed to enjoy it.

After the mask was created we sat down with Dr. Liebsch and discussed the tumor and proton beam treatment. I think Jaime and I have sort of slipped into a type of euphoria over the past two weeks as we have watched Jared's condition stabilize, or so it seems. This discussion with Dr. Liebsch came as a reality check for us. We discussed all of the potential side effects of the radiation as well as past cases of radiation treatment on other children. Long story short is the fact that unlike other tumors, once the chordoma is treated and killed, it does not breakdown, but remains where it is, as scar tissue. I don't know what implications this has, but it is definitely better than having it sitting there expanding aggressively. They are also unsure about the effects of treating Jared simultaneously while on Rapamycin. They have had cases of children experiencing serious vascular complications during treatment while on chemotherapy drugs and I am sure they are concerned about the unknowns in Jared's case. The vague, but unsettling piece of information for me was the fact that once radiated the tumor doesn't typically recur in the same location, but will make home somewhere else, if in fact it does show it's ugly face again.

Maybe Rapamycin holds the secret ingredient for treating Jared's chordoma long term, but it is just too early to tell. We are awaiting the CT scan results and hope to have something today, before a holiday weekend. Jared was required to use the mask during the CT scan in order to create treatment quality images. They placed Jared on a table and positioned the mask over his face and fastened it to the table. You can imagine the crazy thoughts that would go through a child's mind with his head strapped into this machine. He did not find this experience fun at all, to say the least. First, he couldn't breath then his face itched and then it was choking him. My heart ached for him, but at the same time I had to get very stern with him and assure him that he was in fact breathing and was not choking. Dr. Liebsch very kindly wiped off all of the itching with a wet towel and was very patient through the whole process. Finally Jared was secured and ready to go. He sure has had his portion of life experiences over the past number of months.

Overall Jared's spirits are very good. He is joking, laughing and playing a lot more now that the kids are here. The youthful, carefree attitudes of his siblings may prove to be the best medication yet. They are a riot to watch and a blessing to have together. Thank you to all who have made this possible. I do not have results from the scans, but we will post what we know following any news. We love you all and have felt your love and prayers on our behalf in full measure. We know that God is watching over us and we have been blessed and uplifted in our challenges. Thank you and God bless you all for your love and service.

Together

There is still not much news to report other than we are all together again.  Yeah!  It’s been so great to all be together and not across the country from one another.  Bradley seemed so much bigger to me just from being apart this past month.  He is a crack up – Andrew and I love the way he says “Boston,” it’s cute.  And Gabrielle is just so fun – it’s good for Jared to have them around.  Jared is doing well . . . . everyone is very hopeful about what has happened since Jared has been on Rapamycin.  Jared still has some bad days but all in all we feel confident that this drug has really helped.  Jared was declining so quick when we first arrived, we know if this medicine was not helping, then things would be very different right now.  Jared’s post Rapamycin imaging will be done Thursday.  He will have a CT scan and then depending on what the findings are an MRI the following day.  The big question is:  Is this drug, Rapamycin, shrinking the tumor or just stabilizing the tumor?  Do we proceed with radiation right now, or do we wait for a couple of months in case the tumor really could shrink more?  Andrew and I have so many questions and I think to be honest so do the doctors.  Jared is the first to be on this drug for a chordoma tumor.  So . . . when we get some imaging done then we can discuss more about what the plan of attack will be at that point. 

Until then we are just trying not to come down with hotelitis (I think I've got a small case of it already).  I’m ready to have more of a “home” setting.  If all goes as planned then Tuesday will be moving day into our apartment, across the street from the hospital, and we are looking forward to it!   

We will post at the end of the week with the latest plan.  We just hope and pray for the doctors who are making these decisions to be able to make the best decision for Jared and his tumor since it is so rare and Jared is the first, to be on this new medication.  Apparently, with Jared’s success they are treating a little boy from Argentina with the same medicine.   We feel so grateful to be here in Boston receiving the care we have.  The future looks so hopeful - it's exciting and we feel so blessed.    

No News is Good News

I thought I would post this video of Jared at the beach last week. This is a glimpse of Jared shining through the discomforts of the tumor. We love him so very much and have loved sharing these one on one moments with him in Boston. We have been able to capture a lot of memories and this video was one of them.

I arrived home yesterday to find my other two kids very well taken care of and full of hugs. I know it absolutely pains Jaime not to be with them at this time, but she will be greeted in Boston with open arms and running children come next week. Jared is well, his symptoms do not progress, and this brings hope each passing day. An MRI & CAT scan will occur the week of the 31st of August. This will be the moment when we really find out how things are looking. For now it's just visits to the doctor, rapamycin and exploring Boston. We love you all. Thank you for all of your prayers and sacrifices in our behalf.

High Hopes

Our hopes have been high these past few days as we have watched Jared. He seems to be doing better since he was discharged from the hospital last Friday. His mornings are still hard (waking up with strong headaches) but the headaches seem to be fewer throughout the day. I guess the main thing that we have been so excited about is Jared just seems in higher spirits. You can tell he is not in terrible discomfort like he was because he smiles more and has even laughed more at his Dad’s jokes. So either Andrew is getting funnier or Jared is feeling better.

Thursday we ventured out of our hotel room, put our seven-year-old in a stroller, and explored part of the freedom trail. We saw the USS Constitution Battleship and Bunker Hill Memorial. At Bunker Hill you can climb to the top of the monument, all 294 stairs of it. Jared wanted to try so we started. Andrew started behind Jared and put his arms underneath Jared’s armpits and sort of just lifted up him up a good portion of the way. We stopped and rested a few times, but we pushed to the end, and made it to the top. Jared had a huge smile when we did and you could tell how proud he felt that he made it and that he finished. It was cute.



Yesterday we drove up the coast a little bit and went to Nahant Beach. After watching Jared throughout the afternoon we can’t help but be filled with so much hope and optimism. Jared would run a bit chasing seagulls, and dig holes in the sand with his Dad. He still has his moments of holding his head/ear, feeling sick to his stomach and still hard of hearing. But all in all we know for sure he has not gotten worse since starting the Rapamycin. Even if it’s just stabilizing the tumor, it’s doing something! We are filled with high hopes and feel so grateful to be here under all the different Doctor’s care that we have been here in Boston. We are anxious for our appointment on Monday to hear what one of our Doctors has to say. This is all so new to everyone . . . but so exciting and from what we have seen these last few days very hopeful for a promising outcome!

Day By Day

Here are some pictures that we had taken right before we left for Boston! Our photographer, Mary Kim Photography, did a wonderful job! We are anxious to see the rest. She posted more on her blog @: www.marykimphotography.blogspot.com
We recommend her to everyone for your future family portraits. :) Thanks Mary Kim for working so well with us and our rushed schedule!

Everyday, to be honest, is about the same, which I guess is good, Jared does not seem to be accelerating downward. Jared is although very lethargic, he feels sick to his stomach a lot, sometimes he feels dizzy (the tumor is pressing right on his inner ear causing symptoms like this) and of course headaches periodically throughout the day. His speech and eating abilities have stayed relatively the same these last two weeks. He seems to struggle more with liquids than solid foods when he eats. Sometimes he will do great when eating and have no choking spells and other times he doesn't do quite so well. We saw the Doctor yesterday and she increased his Rapamycin since Jared seems to be tolerating it well. Another positive note is Jared is able to swallow his pills so we have had no need to use his GI tube for meds since the first two doses of his medicines. Yeah!

I think Jared looks at his chest, and gets wigged out a bit like he is some sort of robot or something. Jared has the port-a-cath underneath his skin that protrudes out, and then the GI tube, which as Andrew described earlier literally looks like a snap to a beach ball. Right now he has three little "buttons" surrounding the GI tube which are helping holding it in place while it heals. These "buttons" will eventually fall off, but in a way his chest does look a little robotic. He is so quiet about it all and just sort of takes it all in. He has his moments of perking up where we get to see more smiles, but we sure do miss the real Jared and wish this tumor would go away so we could have him back! We are moving forward . . . and feel hopeful that soon we will have our Jared back.

Rapamycin

My heart is full this evening as I prepare this blog. I sit here sharing a king bed with my wife and Jared. Poor Jared is snoring loudly and I must apologize for getting personal, but it is a bit heartbreaking considering the news from the CT/PET images. We were informed that the tumor has in fact spread very rapidly into the area just behind the throat all the way down the neck to the C5 vertebrae. Images also revealed that it has recurred in its original location, as well as others in the skull base. What a daunting beast he is dealing with. He somehow remains quiet through most of it. He complains of pain periodically from the surgeries as well as a headache, but overall he just doesn't say much. Oh, what a sweet child, and to have to watch all of this is heartbreaking, but I know there are greater purposes in everything we experience in life.

When Jared was originally diagnosed he was also diagnosed with Tuberous Sclerosis Complex (TSC). This has gone unnoticed throughout the years, and upon being diagnosed, we were told that since he showed no symptoms from this disease it was irrelevant at the moment. The chordoma was first and foremost in this battle and must be dealt with immediately. Following effective chordoma treatments we would deal with the TSC, well, so we thought. It just so happens that Massachusetts General Hospital is home to one of the leading TSC doctors in the world.

Originally, it was planned to treat Jared with chemotherapy drugs that, quite frequently, have shown no effect on chordoma tumors. We were informed that due to the aggressive nature of the tumor we could have a chance, as a handful of other children had shown some response. We were nervous, but hopeful that Jared might be included in that group. It was not until the oncologist became aware that he had TSC that a second option became available.

A third physician was introduced into the picture. This third physician is the world renowned TSC doctor who believes there is a very strong correlation between TSC and chordomas. She believes that TSC tumors and chordomas show metabolic similarities in the mTOR pathway. This is a pathway that apparently regulates cell proliferation. This pathway becomes deregulated in TSC and will present a risk for benign tumors to develop throughout the body. A drug call Rapamycin has been used and has been proven effective at shutting down this pathway and thereby inhibiting and decreasing the growth and size of the existing tumor. She suggested we try a daily dose of Rapamycin on Jared and strongly believes that we might be able to see some of the same results.

Jared took his first dose of Rapamycin last night. We will observe him very closely while he is taking this to make sure he is not growing worse. If his condition does not improve and his symptoms increase, everything is in place to begin chemotherapy immediately. We are excited for the prospects of decreasing the tumor size with a drug that has proven to have far fewer side effects. We are very anxious to see some improvement and be on the cutting edge of chordoma science. What a great thing this could be for others?

Ports are a go!

The surgery today was a success. Jared is back in his room and fast asleep. He has had a long day of no food, ear examinations, doctors,an ecocardiogram and finally the surgery to place the port in his chest for chemotherapy and a feeding tube to his stomach. We really are proud of how he has handled things. He has had his moments of being fed up with the poking and prodding, but overall he is a real champion at how he has dealt with all of this.

I just want to briefly describe the ports that are inserted into his chest. The IV port is called a portacath and is inserted beneath the skin so as to give Jared the ability to swim, bath and so forth. It is nothing more than a small drum like cavity that is connected to a small catheter which is directly linked to one of the main veins to his heart. It is amazing to see all of these little devices which make life a little better on people with these types of issues. The gastrointestinal port is a button type which will eliminate any tube hanging from his stomach. It looks just like one of those air snaps on an inflatable beach ball. They pull open a little flap and connect a tube and load his stomach up with whatever they need. It really makes everying quite convenient for the circumstances.

Now that the surgery was successful, he will go at 6:00am in the morning for a series of 4 CT scans. These will be followed by a PET scan at 10:45. Both of these scans combined, will provide the physicians with a detailed image of any spread of the tumor throughout the body. The CT scan will provide a good anatomic view of what lies beneath, while the PET scan will highlight the metabolic activity of the cells. If the tumor does in fact exist outside of the areas previously explained, it will be highlighted and pinpointed to its respective location.

The medical oncologist informed us today that with the port in place she will begin administering the chemotherapy drugs tomorrow. It is a very anxious, but apprehensive feeling to have all of this starting tomorrow. On the one hand we want them to begin now, but on the other hand we don't want this little guy to have to experience any more. We are so grateful to be here in Boston. Jaime and I are very grateful to be able to be by Jareds side through all of this. We feel he is being given the best possible chance of overcoming the odds. Many of you have made this possible. Thank you from the bottom of our heart.

Boston

This will come as quite a contrasting update to the last posted back in early July. Jared's condition improved following his surgery and he was able to be with cousins and have a lot of fun. Shortly after the fun, we started noticing some of his pre-surgery symptoms showing their ugly face. Obviously a bit nervous and paranoid, we began conversations with doctors.

Our August MRI checkup in Pittsburgh was moved up a week and we went to Pittsburgh with hopes that Jared was just experiencing some type of complication from the surgery. After a long week, we were informed that the symptoms were due to recurring tumor growth in the lower portion behind his throat. Both Pittsburgh and Boston Physicians concurred that surgery was no longer an option.

Now, chordomas are a different animal in that most cancer drugs are not very effective in fighting such a tumor. Dr. Liebsch from Boston presented to us the findings that there have been a handful of cases, in children with very aggressive tumors such as Jared's, where certain chemotherapy drugs have shown effectiveness. All physicians agreed that Jared must begin chemotherapy at once. We were referred to another pediatric medical oncologist in Boston that would be willing to meet with us on Monday. Appointments were made, we returned home, and all of the arrangements were made for our voyage. Many of you within the reach of this email have made this a smooth, quick and non-burdensome turnaround to Boston . We cannot thank all of you enough.

Well, being that today is Monday and Jared is now in bed I will begin to elaborate on our happenings for the day. This has probably been the most challenging day up to this point. After giving all the details to the medical oncologist, Dr. Liebsch then joined us as well. They both explained their desired plan of attack and then opened things up to questions. A lot of questions were procedural, but others involved their interpretation of the MRI. It was worse than we had imagined. Oh what an amazing turn of events.

We were informed that the tumor had in fact grown back as previously discussed, but it had also spread further down the neck. They are concerned that it might be spreading to other locations, but are hopeful that further imagining of other possible areas will reveal that it is contained in the area behind the throat. If it has, in fact, spread elsewhere, this will change the whole ballgame. The current plan is to admit Jared to the hospital Tuesday at noon. Upon being admitted they will perform a swallowing test, as done in Pittsburgh, and perform additional imaging. Wednesday, they will place a central line close to his heart in order to administer the chemotherapy drugs safely. They also informed us that they will be placing a feeding tube directly into the stomach, regardless of the results of his swallowing tests, this will be needed for giving Jared different medications during his treatments. Following all of this he will begin his first cycle of chemotherapy. Oh, how his life is going to change over this next week. What a heartbreaking experience this is, but I know many others have it worse. It is nice to be in the hands of physicians who have experience dealing with these diseases.

Chemotherapy is round 1 of the fight. If the first cycle of chemotherapy proves to be effective, they will proceed with another and another until no further benefit is noticed. This will begin round 2, the proton beam radiation. They sort of explained it to us as a race that Jared has fallen behind in, we have to use chemotherapy to catch up with the tumor and if possible, get ahead. If we can get ahead of the tumor, the proton beam will be more effective at doing its job. Hey, there is something to say about being the underdog.

Well, at the point of letting our emotions get the best of us, we decided that we needed to get out for the rest of the evening. We ended up taking a taxi to the Museum of Science to watch an Imax movie about the the world under the sea. It was so fun to see such a big smile on Jared's face as he was surrounded by the images of the movie. He loved everything but the giant squids. We spent another 45 minutes in the gift shop looking at all of the awesome toys they have. It really was a lot of fun. Jared has a magic trick he will have to show off upon his return home. It was great to be able to spend this evening away from everything that had just happened and will happen.

I will fully admit that the future for our son seems very challenging, but we find hope in the words from the doctors that there are still posibilities to beat this. Even more so do we find comfort in a loving God who is continually mindful of us in this difficult time. We have been so immensely blessed by the outpouring of love and support from people all around us. Family, friends and aqcuaintences have truly opened their hearts to us. I am positive there is a loving Father above who knows our deeper needs and will always seek a way to meet them first. Our sons recovery and journey lies in his hands. We love you all, thank you for your prayers in Jared's behalf. We will continue one day at a time with the hope that it will be the turning point for a miraculous recovery.

Everything looks great!

Andrew and Jared returned home and everything went wonderful! Everything looks good (all the blood flow, etc.) with no sign of aneurysm formation. They removed the stents and cleaned him all out and everything looked great! What a relief! What a blessing! Jared seems just like his normal self. Andrew said Jared couldn't wait to get back home to be with his cousins that are still here visiting.

A funny thing that happened to Andrew yesterday at the hospital. Andrew requested Jared's medical record to be printed so that we could overnight it to our Doctor in Boston. About four hours later he gets a call telling him that it's just over 1200 sheets of paper and the total cost would be $465.00!!!! So of course shocked, alarmed and frustrated Andrew went to discuss the whole thing . . . long story short he talked to the supervisor, explained the three items that the Doctor requested and it was resolved in minutes. She printed off what he needed for free and Andrew had to write a note with the phrase "continuous care" on it and that made it so he didn't have to pay for the 3-ream thick pile of papers that claimed to be Jared's medical record. Funny, funny . . .

Now . . . we just need to work on dates for Boston.

Wow, what a month!

I can't believe it has been a month since Jared's surgery and how well he is doing. When we first returned home from Pittsburgh, that first week was a little hard. He was still taking his steroids, which made him more emotional, and irritable. He cried a couple of times saying, "I just want to feel like a normal kid again." It just broke my heart, but after he was done with the steroids things improved sooo much. He and Gabrielle started to play like they used to and his whole mood about him improved. Our other worry since we have been home is Jared's low grade fevers. At first we were giving him Advil around the clock and now they have come much more infrequent. We had him checked for pneumonia, and other infections, but there was never evidence of any type of infection. He is on antibiotics and we feel that these fevers are due to the plastic stents in his nose. Andrew and Jared will be leaving Wednesday to return to Pittsburgh so that Jared can get these stents removed and also receive an angiogram. If all goes well they will return on Friday.

We still have not yet received word about specific dates for Jared's radiation treatment. The radiologist oncologist contacted us a couple of weeks ago and we plan on making contact with him this week. Hopefully, within the week or so we should know more so we can plan more with regards to housing, etc.

Jared really is doing so well. His speech is great (it's quiet, but very understandable) and even his eye has improved greatly since first being at home. We feel so grateful for how things have come about since first being diagnosed. It really is a miracle! Jared had a great 4th of July celebration with cousins that came to see him from Texas. It has been so good for him to be able to be with those he loves to be with, to work, play, be active, laugh - doing exactly what a seven year old should be doing. We know Heavenly Father's hand has been in all of this from the beginning and we feel so grateful to Him for all the blessings.

Happy 4th of July everyone! Thank you all so much.

Home Again

We have arrived as many of you know already, but I just wanted to take some time this morning to thank all of you within the reach of this blog for your support, prayers and kind words. You have all brought us much needed strength at this difficult time. We arrived home to find an enormous banner stretching across the front of our house. On this banner were comments from children and adults throughout our neighborhood. As we pulled into the driveway I discovered a backyard free of the bushes that I have been trying to remove since last year. This is an enormous amount of work and I cannot thank you enough. It all was very humbling and I sincerely wish we could thank each one of you personally for all you have done.

Jared is doing so much better and seems to be improving each day. Prior to leaving we had some appointments, in which we discussed Jared's condition. All the doctors were impressed with how well things had gone and how quickly he was healing. The neurosurgeon did point out that the removal of Jared's carotid artery also included the removal of the nerves that wind around it, like I mentioned in a prior post. One of the most evident results of this is his inability to tear up in his left eye. He will also not be able to sweat on the left side of the face. I must admit, it is a small price to pay for what he has had removed from his head. Also, to think of the alternative approaches to remove the tumor, we are very grateful for how this all turned out.

Jared will be returning to Pittsburgh at the end of this month for an angiogram and the removal of Jared's plastic stents in his nose. This will provide a good follow up and assure the doctors that the removal of carotid artery has not resulted in an aneurysm or leakage through the plug that was used to block flow through the artery. This should be a quick outpatient procedure I would imagine, but will give a lot of peace of mind. We are unsure of the dates for his radiation treatment in Boston, but are imagining it happening around the middle to the end of July.

Jaime and I are very grateful for a loving God at this time in our live. This experience has brought about so many tender mercies of the Lord and we again cannot thank you all enough for your faith and prayers on Jared's behalf and the outpouring of love that we have felt. We will most likely not be posting daily for now, but will keep you all updated as we find out more or as we hit more major milestones. Our Heavenly Father does hear and answer prayers and this whole experience has been a testimony to that over and over. Thank you for your participation in all of this.

We're Going Home

Just a quick post to say that after all of the appointments, it is decided that Jared is just fine to go home tomorrow. We will keep our flights for tomorrow morning and be home in the afternoon. We can't wait to see Gabrielle and Bradley and be in the comforts of our own home. I will post again this evening with more details, but for now we are so grateful for such an amazing outcome. Thank you all. We have been truly blessed.

We're Out!

Jared has been officially discharged from the hospital this afternoon. The doctors came in on rounds this morning and removed the drain from his neck and explained how pleased they were with Jared's progress over the weekend. It was then that they told us that we no longer need to stay at the hospital and they were going to put in the orders to be discharged.

Two of the doctors on the surgical team want to see Jared prior to him leaving for home, so we have arranged two final checkup appointments for tomorrow. The first will be with the Neurosurgeon and the last is with the ENT Surgeon. These appointments will determine whether or not we will fly home together on Wednesday. We are obviously very hopeful for a positive outcome from these two appointments. We are also hopeful that we will get some additional details on Jared's radiation trip to Boston. Despite what happens, it is nice to have taken another huge step in all of this. It is amazing to think that in under two weeks Jared has had a very difficult tumor resected and is up and about like he is. As I have said before, it is nothing short of a miracle.

The downer in the appointments tomorrow is the high probability that Jared will require an additional scope through his nasal pasages. Jared was actually in the room when the pediatric neurosurgeon was informing us of this prior to us leaving and broke out in tears once they left. He actually asked if they would just put him to sleep when they do it so he doesn't have to feel it. It is heartwrenching to know just how much more lies ahead of this, but we are so glad that the real challenge of surgery is behind us.

It was brought to our attention by the pediatric neurosurgeon that upon moving the carotid artery there are small autonomic facial nerves that wind around this artery that were sacrificed as well. She informed us that this might be the reason he has a slightly droopy eyelid on his left side as well as the possibility of him not producing tears in that eye. She also mentioned some asymetry in the flushing of the skin and mentioned that we might notice it most in hot environments. We hadn't notice any of them up to this point, but when she left and Jared got emotional about the nasal scope we did notice that his left eye did not produce any tears. He has been holding that eye and complaining of irritation so now we know a possible reason why that is the case. All in all, it is a small price to pay for such a massive tumor resection. We are grateful for such a great outcome, but still feel very solemn about everything that he has been through and will go through.

Leaving the hospital seems to have struck a reality check for Jaime and I. I can only liken it to that feeling I have felt in the past when we have had a new baby born and we take it home from the care of the hospital for the first time. It always seems to be very humbling and this is nothing short of that for us now. What an amazing experience this has all been. What a challenging experience Jared has been through. We are so very proud of him and will see this through to the end so that he can receive the best long term prognosis that we could ever offer him. Ultimately it is out of our hands, but he has been blessed by the hands of a loving Heavenly Father who clearly cares for him and loves him so very much. It is impossible to express to all of you our thanks for your concern, your prayers, your support and your faith. We hope to see as many of you as soon as we possibly can. May the Lord bless you all for your service.

A Fun Day of Visiting!

So we had a great day of just hanging out and visiting. Dave and Jenn and their cute little Brooks are visiting with us this weekend from D.C. and it has been great to be with family! We had a great time chatting and laughing and spending the day together. There is a great big waiting room on floor 3 that we had all to ourselves (since it's the weekend) with fun stuff for Brooks to do and a change of scenery for Jared. Jared's has been out of his room quite a bit today, which has been good for all of us. Here are some more pictures of the day -




Jared with his Uncle Dave



Jared's walking better everyday.
Below are pictures of having fun in the waiting room.
These gigantic blocks are one of Andrew's favorite toys!





Cute Brooks had a great time as well.



Here is Jared loving Jenn's homemade zucchini bread. Thank you Dave and Jenn for coming this weekend! We loved it!

At the end of Jared's nap this afternoon we had a surprise visit from Chris Hoke. He is the nose tackle for the Superbowl Champion Pittsburgh Steelers! He and his son came to visit Jared and gave him a Pittsburgh Steelers teddy bear. It was very nice of them to come and visit and we owe it all to our friend Shirley, who works with my Dad, who set it all up.

Jared has done great today. Like it was said in the post yesterday, Jared just gets better and stronger everyday. I think tomorrow we will get a better idea of how things will pan out for the rest of our stay and how much longer.

The optimism of children is amazing. We were kneeling around Jared's bed tonight discussing how much we missed Bradley and Elle when I made the comment, "It wouldn't be so bad if they could be here with us, like a vacation." Andrew then turned to Jared and asked him jokingly if it has been a vacation for him. He replied a very serious, "Yes". Andrew asked, "even the surgery?" Jared's reply was, "not that part, but everything else." If only we could all look at life like this.

Slowly Back to Normal

Jared continues to improve very rapidly. He is eating very well and needs so much of it. We are not sure how much weight this kid has lost, but he is a skinny dude. We are trying to beef him up as fast as we can.

He is gaining his strength back each day. He is walking more and just doing more on his own, which I'm sure is helpful to his morale. His confidence in his neck and it's strength are returning which makes us more and more comfortable about having the brace off. He only wore it for about 30 minutes today.

Another major milestone was the amount of times that we got him to smile today. He is slowly regaining his spirits back. His voice is very soft and a bit nasal right now and I think he is a bit uncomfortable with all of it, but he really sounds great and will pull out of all of this and slip back into the normal routine and forget that a lot of it ever happened. He already doesn't remember the breathing tube which is a miracle in and of itself.

Jaime's brother Dave and his wife Jenn drove all the way from Washington D.C. to spend some time with us. It was really a lot of fun to sit down and talk with them this afternoon. It really is great to have company and especially when we would never have imagined having any at all. Their son Brooks is the cutest little guy and is a ball of energy. It is going to be great to spend this weekend with them.

Just another day in paradise. Love you all.

A Day of Many Changes

10:30 AM

Jared is up and at it again. With his back side flapping in the wind, Jared walks the entire hallway on our new floor. He is still fairly week, but is growing more confident in all of his movements. The walk is fairly cumbersome with all of the tubes and wires that must come along for the ride.

11:10 AM

Occupational therapy arrives for the speed course. After a series of motor skills tests, Jared manages to beat the therapist in the game Connect Four. It was amazing, I didn't even see it coming, he managed to stack four of his pieces without the nurse even noticing. It was intense.

11:30 AM

Jared arrives for his ENT visit. The feeding tube is removed and it just kept coming and coming and coming as it is pulled from his nose. After pulling this from his nose it was time to shove something else back down so they could watch Jared do the "cookie swallow" test that way. It was a no go as the doctors tried to shove a tiny scope down the nasal canal and throat. The balloon in the other nostril would not allow for the entry of the the telescoping device. After a few moments of some extreme discomfort, the doctors began looking for another port of entry. I am not sure which is worse, but they thought they could get it down through his mouth. After endless gagging, all plans of getting a camera study of the throat were postponed. They decided to the do the "cookie swallow" test a different way - through xray. Back to the room.

1:30 PM

The long awaited "cookie test" has arrived. This is by far the most amazing test thus far. Imagine the movie, Pirates of the Caribbean, when the men change to skeletons and you observe the foods and wine being chewed and swallowed by nothing but bones. The was a very real experience today as Jared ate a variety of foods under continuous X-Ray. I literally watched as the food entered the mouth, passed to the pharynx and down the esophagus. I watched as a skeleton chewed and swallowed food. Like I said it was very cool. The best part was that Jared not only enjoyed the first food he has had in about a week, but that he passed and will not require a feeding tube. Great News!

4:00 PM

The remaining tube and balloon in Jared's nose is suctioned and removed. This was short, sweet, but left Jared a mess. We turned on a quick movie and moved in to scour the face. Underneath the tubes and dried blood was a handsome kid that we recognized and missed. All looked great!

5:30 PM

Jared's central IV line in his groin is removed by the neurosurgeon. We came to find out that these bleed pretty heavily and require pressure for a substantial amount of time. It ended up being the best conversation we had experienced up to this point with this particular neurosurgeon. They typically have not been one for small talk. One more line in the body down.

During this visit we were also informed that the x-ray's revealed that Jared's neck does not have any structural instability. This would mean that the chance of a neck fusion is pretty much out of the question and he will be phasing out this collar over the next few days. An answer to prayers and nothing less!

6:30 PM

Jared eats for the first time. This was a great and long awaited site. Jaime and I just sat there watching him closely, but he did great and was wonderful to see. About 10 minutes into eating Jared is out cold in round one. After a short nap he is back for round two.


7:30 PM

The Snow's have arrived. Man it is nice to see a familiar face so far from home. Jaime and I really had a lot of fun eating dinner and visiting with Mike and Kris Snow. Even Jared joined us in a wheelchair as we ate in the cafeteria. What a blessing it was to have company. We just couldn't thank them enough for going out of their way on their busy weekend. We loved it.



8:30 PM

Game 7 of the Stanley Cup, artwork and some Mario Brothers. It was nice to unwind from a pretty busy day.

All in all it was an eventful and extremely successful day. It is really great to see such progress after just one full week following surgery. It has been a week that he will hope to forget in the near future. We are very watched over and feel it daily. Thanks for all of your prayers. We love you all.

A Walking Man

You know, when I was a kid I could never beat Super Mario Brothers. I remember when we first received the original Nintendo and how excited we were. It came as a shared gift between my brother Jon and I and we played it for hours on end. I never managed to get better though, my brothers all started conquering level by level and to this day I never managed to do so. Maybe this says something about my competency level. Well, I will have you know that I think I am worse today than I was all those years ago. I think they have made the game harder. Somehow Jared never ceases to be entertained by our incompetence. We found ourselves playing again tonight at Jared's bedside in his new room here at the hospital.

Yes, Jared has officially graduated from the ICU. We had hopes of making the move last night, but they didn't have any open rooms available. We are grateful on many fronts to be where we are tonight. I think for me it means that we are that much closer to being with Gabrielle and Bradley in our own home. We finally invested in a portable web cam and have talked with them a bit over the internet. I think it is really good for Jared to see them, although I know it makes him miss it all so much.

Jared and Gabrielle have a very fun relationship. Where Jared is so very quiet at times, Elle can be quite the opposite. You will hear from across the house such belly laughter from Jared as Elle lays the jokes and humor on thick. They can go on and on and we just sit there and love every minute of it. Jared said yesterday that the thing that makes him the saddest while being here is how much he misses Gabrielle and Bradley. Jaime and I sat in our seats yesterday in tears as we watched Jared write a letter to Gabrielle and Bradley, of his own free will, that said, " I miss you" in balloon letters with a red heart on it. We are grateful that we are one step closer to being together again.

As for an update on Jared's condition, he has officially stepped foot outside of the bed twice today. The first steps were a total of about 20 feet and the next was a walk totaling about fifty yards. Jared started physical therapy so I am sure they will have him advancing on all of this daily while he is here. I think tomorrow they will have him bench pressing and doing ladders.

Jared went in for a neck and skull base X-ray today and it all looks very positive. Dr. Gardner, a neurosurgeon, examined the films and indicated that all looked well and felt that he would be free of the neck collar shortly. This is great because it all points to the fact that he will no longer have to have his neck fused. Despite the lack of a final analysis from a radiologist, he was confident enough to remove the collar tonight and informed us that his only need for the collar, for now, will be when he is out of bed. He does complain of some pain, but in general is doing very well with the change.

The hoses extending from Jared's body are getting fewer and fewer. We are very hopeful that tomorrow we can loose the feeding tube through his nose and get Jared some good old fashioned cafeteria food. Tomorrow at 11:30 we are taking Jared to the ENT clinic for the swallowing test. He will eat a variety of foods at varying consistencies, all doped with blue dye. This will all be observed through a tiny camera entering the nose. If all goes well, we are then one step closer to returning Jared to as normal a life as we can (cafeteria food) at this moment.

We spoke with Dr. Gardner for a while regarding Jared's tumor, radiation and the possibilities of recurrence. Jared has received excellent care and has been at the hands of some of the finest surgeons in the country. Jared will also be receiving radiation treatment in approximately 6-8 weeks under the care of a doctor who has dedicated a lot of his time to Chordoma tumors. We have been blessed with so many miracles for Jared at this point in his life. We have been on our knees on many occasions, praying that we can make Jared's life as normal and comfortable as possible. Our prayers have been answered and we have been blessed with this optimal scenario. However long Jared is with us, he will be much happier and much better off than the other alternatives. We must pray for medications and treatments to become available in the near future that can treat and hopefully stop the incidence of recurrence of Chordoma tumors.

I must admit, it is a daunting road that lies before us and at times very sureal, but I am so grateful for the purpose and meaning that is found at every step of the way.

50 %

Well today has started out with a little bit of a downer feel to it. This morning they came and scoped out Jared's vocal chords. This consisted of putting a little tube (yes another tube) through his nose to the back of his throat. They were able to see that the right side of his vocal chords were working but unfortunately, the left side were not.

They said not to get too discouraged. Often times they come back days after, and even weeks after surgery. What they are worried about now is if those same nerves are affecting his swallowing abilities. We have been suctioning Jared's mouth less and less, but it's still a concern. They will wait until Friday to do what they call a "cookie swallow test" which basically consists of the same thing that they did today but they will actually watch Jared eat. This allows them to see where the food goes so that they can make sure everything is functioning properly so that there is no risk of food going into the lungs causing infection (aspiration).

Starting last night they have been feeding him small amounts food in his feeding tube. He still complains of being hungry, I guess that is why this exam today was such a downer because Jared still is not allowed to eat. Hopefully after Friday everything will go well.

It looks as if we will be moved out of the ICU within the next day or two. We will be talking to one of the surgeons either this afternoon or in the morning about the next step: the proton beam radiation.

We're hopeful that things will go well, they have thus far and we do feel so blessed, but it still was hard to hear the news this morning of his vocal chords and then of course, my mind wanders as to his swallowing abilities, etc. But we shall see . . . and keep our hope and faith.

Hello Out There

Well, not a whole lot has changed, but Jared is showing signs of getting better. We decided to post a short video of Jared saying hello to Gabrielle and Bradley, but thought you would all enjoy it.

Jared has to go in to see the ENT doctors tomorrow for some scoping of the throat and vocal chords. They have to check his swallowing capabilities as well as the possibility of aspiration. Hopefully this will free Jared to be able to eat on his own and remove the hunger pains. His voice is still very soft, as it was prior to the surgery, and they want to make sure there has not been permanent damage. The downfall of these tests is the likelyhood of sedation. I would rather they sedate him though, than see him fight the white jacketed men shoving hoses down his nose and throat. What a sureal experience this all is.

Jared had a lot of visits from doctors and nurses this morning who just wanted to keep inspecting everything and everywhere. Just after he had said goodbye to one set of doctors the ENT doctor walked into the room to place the feeding tube further down his nose so that it could reach his intestine. Needless to say, Jared did not welcome the visitor and quickly pulled the sheet over his head. I hope he reads this someday and realizes just how classic some of these moments have been. They did manage to push the tube from his nose all the way down to his toenail.

I have to say that I am really missing little Gabrielle's hugs and Bradley's tackles. Thank you Darren for the video. I well up thinking about them and how grateful I will be to have us all together again. Jaime ran into a man in the laundry room here at the hospital (no she has not taken on full employment, just needed some clean clothes to wear) who clearly had made enough long term visits to the hospital with one of his kids that he was giving advice on how to do laundry efficiently in the hospital. As we walk the hospital daily we realize that there are people who have life pretty hard. I find it really hard to complain when we really have it quite well.

This has been a life changing experience and your letters, comments prayers have been so strengthening. To think of prayers being offered up from living rooms, bedrooms, dinner tables and temples, both from the children and adults alike, provide much needed strength. Our life has brushed by so many great people and this experience has brought even greater evidence of that blessing.

We have been blessed to have an amazing outcome thus far and I thank you all again for your amazing love and support.

Suction, Suction, Suction

I really don't know if I need to post much more than the title for an update. After removing the breathing tube it has really just been a day of sucking out Jared's whole body. For all who have not had the experience that Jared is going through I will elaborate a bit.

We have all had that experience at the dentist when they stick that vacuum tube in our throats and are cleaning out all the residues from a cleaning or filling. I remember one dentist in particular who would always have me close my mouth around the tube. I always seriously underestimated the power of the suction tube. Now imagine that feeling, but now slide it a little bit further down the throat past the "gagging ball" and having someone about a foot from your face telling you to cough and relax all at the same time. To make it better, prior to sucking him out they have to gorilla pound his chest. For all you nurses out there you may know what I am talking about. They take this miniature rubber cup and start banging his chest. I must confess that when Jaime and I saw this the first time we couldn't believe our eyes and actually started laughing. He just sat there watching a movie while the nurse played Tarzan on his chest. As the day lingered on and the pounding, sucking and prodding continued, Jared's patience with the whole ordeal wore thin. Needless, to say it has been a long day for this kid.

The neurosurgeons discussed the MRI a bit with us today and confirmed what the surgeons initially told us after surgery. There is a small (less than a centimeter square) portion of the tumor left near the left bundle of nerves. They did not feel that a complete removal of the tumor would be worth removing all of those nerves. I personally and glad and will hope that the proton beam radiation will finish the job without inflicting too much damage. I must confess I do not understand a whole lot about the radiation, but I hope to in the near future. The surgeons today were optimistic about the radiation taking care of what they needed it to. Once we get Jared up and going here we will soon be into the next phase of this journey.

Jared is good and looks much more like our boy. The day shift nurse whipped him into shape and was really fantastic at all she did today. We have had great care here, that's for sure. They completely took him off oxygen and he is doing well. He no longer snores like a mad dog and that is always a bonus. All in all it has really been a great day, but a long one for Jared.

All this superhero stuff is really going to his head. I walked up to him and told him that everyone is calling him a superhero and asked him if he really was one. He replied simply with a nod in the affirmative. I love this kid!

Breathing Tube is out!

They removed the breathing tube mid-morning. This first image is Jared this morning w/ the breathing tube removed - he's just wearing the oxygen mask. The second image down below was taken Saturday, just hours after surgery - he looks pretty good eh?

He has done well. He has had some episodes of coughing up so much mucous and gunk that he then chokes and can't breath very well. The nurse just suctions him out and after a minute of panic he seems to be calmed down again, doing okay.

The nurse said it is good for him to cough all that junk up but it's just such a tense moment watching him trying to get air and not, and having them suction him out. He's complained that he is hungry, but of course he can't eat yet. He's getting fluids through his IV.

We haven't heard his voice much yet. It sounds very soft, like it did pre-surgery w/ the pressure from the tumor. Now it's soft because of a combination of things and mainly having a tube down his throat. We are getting closer though - one step closer having this tube removed.

Thanks for all the e-cards. The hospital delivered our "mail" to us this morning. We were shocked when they said, "you've got mail."