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.