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.

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.