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.