Friday, June 19, 2009

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.

Tuesday, June 16, 2009

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.

Monday, June 15, 2009

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.

Sunday, June 14, 2009

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.

Saturday, June 13, 2009

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.

Friday, June 12, 2009

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.

Thursday, June 11, 2009

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.

Wednesday, June 10, 2009

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.

Tuesday, June 9, 2009

Hello Out There

video

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.

Monday, June 8, 2009

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."

Sunday, June 7, 2009

Kryptonite

Well the superhero has been given some kryptonite. One of the main purposes of Jared being in the ICU is for him to get the rest that he needs, but this kid was wide awake this morning and stayed pretty alert for quite some time. They then served up some kryptonite and he is out for the count. He has been sleeping a lot more this afternoon and is doing well. All vitals are good and the blood work is normal. Ever since the surgery he had a little blood oozing out of his noze. The ooze is for obvious reasons following an endonasal approach to the tumor removal. The sight of all of it was a bit disconcerting, but it has improved quite a bit over these couple of days. Well, he just opened his eyes for a moment and I went to his bed side and said to him, "How are you doing superhero?" He replied simply by sticking his hand in the air while giving me a thumbs up. These tender mercies make this whole experience an unforgettable season in our life.

I too am very grateful for this blog. It has been a very therapeutic and fullfilling experience to document all the happenings of Jareds journey. I only hope that someday he will be able to read all that is written, posts and comments alike, and realize the outpouring of love from family and friends and a loving God who has been with us in some challenging moments in our life. I will be forever indebted to my son for his strength in handling all of this. I love this boy more and more as I see him each day. I become more and more grateful for the family that we have been blessed with and miss my other sweet kids so very much. May I never take for granted the most cherished and prized possesions that I have.

We feel so much hope and anticipation of returning to our home with our healthy son. However, I cannot discount the priceless experiences we are having here. The Lord is with us and we feel your prayers and strength daily. It is truly amazing to see how far reaching the prayers and faith have come. We will never be able to thank you all sufficiently, but are forever grateful. We hope to have more good news of Jared's breathing tube removal and much more tomorrow. Until then, but may the Lord bless you all as we have been blessed by you.

Writing Notes

Hey everyone, it's Jaime. Just wanted to post on the latest of our Jared. Last night and this morning Jared has been writing notes to us. He has been so frustrated w/ his breathing tube. Yesterday he was pretty groggy most of the time, we could pretty much get by w/ yes and no questions, but he seems to be getting more and more awake. Last night he was trying to ask us things, and would get frustrated when we couldn't understand. He would do a little sign language, then it turned into spelling the word out in mid-air, then we were able to get a pad of paper and a marker and it's been a lot better since he is able to write out his questions.

I posted a picture of some of his notes. The breathing tube is his big frustration. This morning he wrote, "I just can't breathe." The nurse said, "when you are awake it really does feel like breathing through a straw", so we just try to calm him down and have him sleep more, again the nurse was going to check w/ the Drs. about changing his pain medicines. He's also complained of the neck collar bugging him (I'm sure everything is bugging him), so we tried to give him a little break this morning from wearing it. Poor guy. He is being a sweetheart though, he's had a few tears roll down his face - Andrew really does a good job explaining why we have to do all these things and have all these things in his body and is able to calm Jared down well. One of Jared's notes was how many more days did he have to have the breathing tube in. The nurse and I told him just one more day - that this would be the last day. Then his next note was, how much is left of today. He means business - he wants this thing out! :)

Saturday, June 6, 2009

MRI Bound

I first want to start by making a correction to a previous post. I had indicated that Jared was in a halo as this is what we understood from the doctors last night. Jared is not in a halo, but is sporting the latest neck support fashion by wearing a neck collar. Either way, both are uncomfortable, but the neck collar is a lot less cumbersome I'm sure.

I woke up this afternoon to find Dr. Gardner in our room giving an update on Jared. Dr. Gardner was one of the primary surgeons from the adult hospital that was on the team. He informed us that the CT scan performed early this morning looked great and so far everything was going extremely well. We had received some earlier information that the breathing tube would be removed after they sent Jared for another MRI today. Dr. Gardner clarified that it would not be removed until Monday, most likely. They are worried about him not being able to handle all of the secretions from his nose and mouth. If he cannot handle them they will require a tracheostomy in order to breath without the possibility of aspirating fluids.

They want him to remain pretty sedated for the next few days to allow all of the preliminary healing to take place. Since increasing the pain medications he has been sleeping almost nonstop. We have been able to talk to him occasionally and I so badly just want to hold him. He is really a good, tough, totally rocking kid. He has handled this all so well, but it just tears your heart out to see it. Everyone here comments how great and tough he is. Every time his eyes open the nurses just ooh and ahhh at those big blue Jaime eyes.

Dr. Gardner also informed us that we should plan to be in the ICU until they get the breathing tube out and can see that he is stable while handling all of the secretions. With this in mind we can plan on an ICU stay until about Tuesday. Following ICU, we would be placed in another fun filled room for another few nights of Super Mario Bros and board games. Hopefully, following this stay, he can be discharged from the hospital. Once discharged, he would like us to remain in the area for another week for regular checkups, after which, we can return home if we wish. Dr. Gardner wants to see him in a month as a followup and there set up the radiation treatments in Boston. It sounds as if the radiation treatments will occur in about 6-8 weeks from now. This is all an optimal situation and appears very possible, but it will require Jared to stay away from any infections and any further procedures.

The trip to the MRI was quite lengthy and is quite the ordeal. All the tubes had to be hooked to new machines or be made mobile. It takes a team of about four or five nurses and technicians to transport him. It was a successful trip and he returned just as we left him. We hope this is the end of his imaging for this stay.

Well, we love you all. We feel the endless support from all of you. Your prayers, comments and child support are such a strength and help to each one of us. I am excited to read all of these comments on this blog to Jared when he is a bit more coherent. I think he was pretty jealous to know that Ty and Bradley were having a sleepover. Thanks for everything. Until next time.

Morning After

Jared arrived here in the ICU last night at about 1:30 or 2:00 in the morning and has been doing well ever since. They were just waking him up as we came into the room and it was so fulfilling to see him. He has more machines and tubes hooked up to him than I thought were possible. They have a breathing tube through his mouth which he does not find very comfortable. In addition to the breathing tube is a feeding tube through his one nostril and another tube to hold up the repairs done inside the nasal cavity. We had a moment early this morning where he became very agitated with the breathing tube and they had to sedate him pretty heavily just to get him calmed down. Since then we have not had any big events. It is quite the sight I must say.

They require post operation imaging in addition to the ones done prior to the surgery. They performed a CT scan early this morning and will send him for an MRI this afternoon. Following the MRI they are hopeful that the breathing tube will be removed.

The neurosurgeons have come in to perform some neurological testing and so far so good. He is able to squeeze with his hands, move his toes and lift his legs. They checked his eyes and the left eye still did not follow far to the left side of his vision, but the surgeons did not expect this to be corrected this soon if at all. We are just grateful to have this mass out of his head and hopefully things will correct themselves in time.

Well in writing this he has awakened again and was watching WallE for about two minutes, but is now asleep. I think that movie about put me to sleep in about two minutes when I first watched it. Maybe next we could have them play some old BYU football classics and that would for sure knock him out.

Well it breaks my heart to see Jared in this condition, but we are so excited for his recovery and can't wait to be able to carry on a conversation with him, not that he has been much for conversation in the past.

Friday, June 5, 2009

11:30

Our hearts are full of such gratitude right now as we have heard that the tumor removal is over and Jared remains stable. Two surgeons from the team came out to discuss the happenings of the surgery with us and were very positive about the outcome of the surgery. The surgeons believe they have completely resected all of the cells of the tumor except for one area within a bundle of nerves that are attributed to a lot of the face and mouth functions. They did not feel that they should sacrifice these nerves to try to obtain every last cell, but do believe that the Proton Beam Radiation that will follow will be beneficial in eliminating these cells.

He should have most function of his face, but there remains a concern for the left side of his tongue and possibly double vision as he looks off to the left side (a small region). These are minor and wonderful compared to what could have happened. Our greatest concern at this moment is the blood supply to his brain. The tumor had aparentley bulged into the left carotid artery (one of four going to the brain) and a portion of that artery had to be removed. The surgeons felt that they could sacrifice that artery, as leaving the artery would have left a large portion of tumor in the area. They felt that during the operation he showed normal brain function and blood flow after the removal of this artery, but they will not know for sure until after he is alert enough to perform neurological tests. They have sealed off part of this artery temporarilly and will be placing a permanent plug prior to eliminate possible leakage that could cause an anurism. This risk is short-term. They said if Jared does fine over the next several days than he will do fine long-term.

This plugging procedure is happening now and is absolutely amazing. They insert the plug in an artery in his groin and guide it all the way to his carotid artery in his neck. This is absolutely unreal. There are risks in this procedure as there are in all of them, but we hope to hear word on this in an hour or so.

There were concerns that Jared would have to have a neck fusion, but as of now he will not. They only had to remove a small part of one of the joints in his neck/spine that the tumor had reached. They felt that the tumor had not penetrated adjacent vertibrate due to a small membrane that was still protecting them. They have him in a halo right now (for a few days) and will then remove the halo. Then they will test his neck function and decide for sure if a fusion is necessary.

There are two membranes protecting the brain - the surgeons removed the outer one where the tumor was pushing against and were able to leave the second layer. They told us this was the best case scenario.

We are very hopeful that in coming out of sedation Jared will have all of his brain function. This is our primary concern after removal of such an integral artery. The human body is amazing and is a testimony to a divine design to all of us. We are not out of the woods, but we do know that God is watching over him and us at this time. Thank you for all your prayers. We feel very grateful for the news we've heard thus far.

5:30

So we are about 3 hours into the surgery and have just received an update that consisted of the nurse liaison informing us that they are currently removing the tumor and vital signs are good. Prior to entering surgery we spoke with the surgeons about their impressions of the scans. They indicated that the tumor had grown from the last time the scans were done and it was a lot lower than anticipated. They will be entering from the nose and the left side of the neck. The reason for the neck entry is to access all of the lower portions of the tumor and to protect the carotid artery. It appears the tumor was seen in the C-1 vertebrate, but was not confirmed in any of the lower vertebrate. It is possible that a neck fusion will be in the future, but at this moment it has not been confirmed.

It was not felt while speaking with the surgeons that a tracheostomy would be necessary and we are really hoping it is not. The only reason they would need to perform this would be if they had to make an additional incision in the back of the mouth for further access. They are thinking that a lot of the breathing, speaking and eating issues are due to the mass effect of the tumor pressing on the back of the throat and surrounding nerves.

Another surgeon came in a little later to introduce himself and discuss any further questions we had. We started discussing the possibility of a complete removal of the tumor. In a typical tumor in any other part of the body they can remove the margins surrounding the growth and completely remove the tumor, but in the skull base its a different story, they can only clean up as best they can. Hence the need for such an intense sequence of radiation treatments following surgery. I know this sounds pretty grim, but we are thankfully in the hands of some of the best surgeons in the country and they are going to give a fighting chance at all of this. Like my father in law continues to reiterate; there are so many advances in cancer treatment that by the time we end up having to fight this again there might be a larger arsenal of techniques and maybe drugs to beat this thing. Who knows, maybe we don't ever have to bother.

We sat next to a man here in the hospital who has a little grandson in his care that is suffering from heart problems and other issues. His grandson is only 22 months old. He has picked up his life as he and his wife, as grandparents, moved from Las Vegas to Eerie, Indiana to be closer to this hospital. I just thought that this was such a display of love. His daughter is a single mother and cannot possibly provide for this child and provide the treatment that he needs so this grandfather has taken it upon himself so she can continue to earn a living. There are so many people around us with many challenges of their own. It never ceases to be a humbling experience and a great chance for growth. Anyway this is probably more than you all signed up to read so I will stop.

We will keep you updated as we hear more details. All is well so far. The surgeons felt that the surgery would last at minimum 10 hrs. - they also suggested they might just "stage" the surgery basically meaning get as far as they can and stop and then pick back up where they left off in a couple of days or so . . .

Thanks for your concern and love.

The Wait Begins

After a fun night of playing games and enjoying Journey to the Center of the Earth we enjoyed Super Mario Bros until we conquered world 2. It was a cozy site with all three of us piled up on Jareds bed. Jared did express his fear for all that is going on, but in general has remained pretty calm. He woke up this morning and we discovered that the IV had infiltrated his forearm and left it pretty swollen and sore. This is not a huge deal but they will no longer be able to use this arm for IV during surgery. Jared is great and we had him laughing pretty good last night. It really was a lot of fun to have that interaction prior to all that is happening today.

He was put under this morning at about 10:30 EST and will remain under for the CTA and MRI scans and will be immediately transported to the OR following imaging (about 12:00). It is pretty heart wrenching to watch your child go under anesthesia. He will obviously be fine from it, but it just yanks at the heart strings. Jared did not have a great nights rest so he slept right up to the Nitrous Oxide gas. We are now just waiting outside Radiology until we are moved to the OR waiting room.

The surgeon came into our room this morning and talked to us about the details of the surgery and all that they are anticipating. Long story short is the possibility of a neck fusion and tracheostomy depending upon how low the tumor is in the skull base. There is also the possibility that they will have to stage the surgery depending upon the length of time they are operating on Jared. If this is the case they will most likely finish the work early next week. It did appear however that they were anticipating a lengthy surgery. We will keep you all updated as we hear actual details throughout.

Well, we are in this for the long haul and we are glad to be at this stage. Thanks for all of your expressions of support and hope. We are very hopeful for a succesful outcome and will be anxious to see our sweet boy today whenever it is. Love you all.

Thursday, June 4, 2009

Pittsburgh

Well that's quite the jump from the last post. After a series of answered prayers we are here in Pittsburgh where Jared will have the Chordoma removed. The reason we have selected The Childrens Hospital of Pittsburgh is because of the doctors approach. We were referred to this facility from our contact in Boston who has a lot of experience with Chordomas. Previously it was thought that Jareds entire lower jaw and tongue would have to be split to even get to the tumor, but now we are excited to know that here in Pittsburgh the surgeons perform what is called an endonasal approach or in other words they suck the tumor through the nose. Sounds kind of Egyptian, but they have performed more than a thousand of these surgeries on various skull base tumors and have had great results. Obviously the trauma to the patient is much less of an issue due to the fact that there are really no cosmetic disruptions. Also the healing time is mucher shorter and hopefully lends to the fact that we would like to get him into radiation treatment as soon as possible.

We are really excited for this approach and are really excited that Jared has qualified. As many of you know, there have been many prayers combined with fasting on Jareds behalf. I want you all to know that prayers are answered as I sit here this morning in a hotel in Pittsburgh. This has all pieced together quite miraculously and we are so excited to be here so soon. It is really strange to use the word excited, but we are and we could not be more grateful to the Lord for watching out for our boy.

Jared will be admitted into the hospital this afternoon for imaging and blood work prior to his surgery on Friday. Times of each of the events are a bit hazy as we have to be admitted prior to getting exact times. Despite the great progress we have made there always seems to be a large elephant in the room. That elephant right now is the insurance company. We are on the edge of our seats waiting to hear their side of the story, but are excited for the prospects of having Jared relieved from this discomfort.

I really can't thank everyone adequately, but I do want to express my sincere gratitude for the love that all of you have displayed for our family at this time. I am not exactly sure how the quote goes, but "the lord does hear and answer prayers, but it is usually through another person that he meets our needs". I now know this to be true more than I ever have. We have been truly blessed by the Lord and thank you all for your continued faith on Jared's behalf.

I look forward to having this done as I'm sure most of you do, but there is a lot to learn and the Lord has great power to perform whatever miracle may lie ahead. Life is a miracle and is easily taken for granted if not kept in perspective. I hope to be able to maintain that perspective more and more each day.

Background

Just to give a little background for those who may not have the full story or any story at all.

Jared Vance was diagnosed with a Chordoma tumor in May of 2009. He had been experiencing headaches and irregular speech when we realized that half of his tongue was not working. This obviously made us a bit nervous so we scheduled him for CT scans and an MRI. After all the imaging the doctors came to the conclusion that Jared was suffering from a Chordoma tumor at the base of his skull. The tumor sits just behind the nasal and throat area of the head. The tumor is extremely rare and is locally malignant. This means that it rarely metastisizes to other locations in the body, but will invade and attack local tissue. So far the only things that we are aware that are affected are the nerves going to his tounge and now to his eye which result in double vision and the elimination of the clivus bone. There is a possibility that it has invaded the top two vertibrate of the spine, but we are crossing our fingers that it has not. It is large enough that the tumor is putting pressure on Jared's airway causing him to snore like a mad dog and have difficulty swallowing. All in all it is a pretty uncomfortable experience for Jared.

On the other hand Jared has been wonderful throughout all of this and we are proud to have such a good natured child. He will rarely complain, but will join us nightly in bed for a night of snoring fun. We don't have the heart to send him back to his room so we just enjoy the moment as best we can. He has been a bit lethargic lately and just not himself. We miss having Jared's playful attitude in the home and so does his sister and brother. He is a tender kid and we love him and we are praying for a real miracle so that we can enjoy his laughter and personality for many years to come.