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.