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.