Sunday, September 27, 2009

"Guardedly Optimistic"

We wanted to write and share some good news. We've heard from one of our doctors from Boston this week. She asked our permission to use Jared's story/photos in a presentation this week that she is doing in Chicago and research grants that she is writing and referring to as the "Jared Project." In Boston, they have seen two more chordoma patients since Jared and have put them on Rapamycin as well because of Jared's tumor being stabilized, if not shrinking it. They remain "guardedly optimistic", which I love that phrase. We too don't want to get too high on the roller coaster but at the same it is so exciting and makes us feel so much hope! Jared has been so happy these past couple of days. He talks so much more and is much more animated. I told him all about the "Jared project" and he just got a big smile on his face and then said, "this has been the best year ever!" :) Can you believe it? I just laughed so hard and was just in shock that he would say such a thing . . . I just love that kid. He also said the closing prayer in his primary class on Sunday. When his teacher told me that - I just couldn't believe it! It just warmed my heart to hear that and to know that Jared would have the confidence and desire to do it - I love it!

We've been doing well and feel so blessed. Jared still has his discomforts and that is the hard part - the constant up and down emotions that come everyday, every week. We feel excitement, hope, then the worry, fear, then the excitement and hope, worry/fear, and so forth. But Jared does handle his pains very well. He is a strong, patient kid with such a goodness about him. All in all things look up.

Friday, September 18, 2009

Home 1 week!

We've been home for one week and in Jared's words, "it's been awesome!" The first weekend home felt so normal! Jared and Gabrielle slept over with cousins and it was just so great to see Jared as happy as he was. The first part of the week Jared and I met with his teacher and also his class. I talked to all the kids about Jared's summer and the things that have gone on. We brought pictures of Jared after surgery, etc. and it went really well. The kids in his class have been very helpful to Jared and I think in some cases too helpful. Jared is a shy kid to begin with and with all of this attention . . . I know he doesn't love it. We are really proud of him though - I know he doesn't feel well and yet he wants to be at school. He pushes himself . . . he had sort of a bad day yesterday with lots of headaches; when I checked on him mid-morning he said, "I want to make it to lunch." And after lunch Jared had me check on him again and he said, "I want to make it to 3rd recess." So he is being tough and we are proud of him. We just have to take everyday as it comes. We love his teacher and the office at his school - they have been so great with everything.

We meet with his new doctor that will be overseeing his care here at home on Monday. His Rapamycin dose was increased just before we left Boston so it will be good to get his blood work done, etc. All in all he seems the same - some days are better than others. Jared makes the most of his moments when he feels comfortable and is not having a headache!

Wednesday, September 9, 2009

A Bittersweet Moment

Well, I didn't quite expect the outcome of our meeting today with the physicians, but we definitely feel good about it all. We are coming home. We are excited to get a feeling of normalcy back into our lives. Hopefully this is the last of our cross country journeys for the year, but we hope it is not the last.

We sat down this afternoon with Dr's Liebsch, Friedmann and Thiele to discuss the outcome of the CT scans and their thoughts on the matter. Dr. Liebsch started by telling us that surgery is still not an option due to the size and location of the tumor and after reviewing the most recent images in greater detail, he does not believe that radiation is a worthwhile option. The tumor does not appear to have receded or advanced beyond its original envelope from when we arrived in Boston, but it does appear to be too large for effective radiation. It still extends down the cervical spine about 2/3 of the way and according to Dr. Liebsch it would require an enormous dose of radiation to handle it. The bottom line is, the risks far outweigh the benefits in Jared's case, and we all feel much more comfortable with this decision.

So, with surgery and radiation out, we are placing all bets on Rapamycin. All three physicians felt that it has been effective thus far and would prefer to get as much out of it as they can. Getting as much out of it means that we will return home for 3-4 months and be referred to a local neurologist and medical oncologist for local care. The physicians here, in Boston, will still maintain oversight of the whole treatment regime, but they will do it long distance. Around the first of next year, we will begin another cycle of imaging for Jared.

While the doctors are very optimistic, they are also very realistic. Before hauling our family out to Boston in 4 months they would like to have an MRI performed at Primary Children's Medical Center. This MRI will be very out of the ordinary, as compared to previous images. The MRI will only be done on the region from the neck to the bottom of the abdomen. They are concerned that it will metastasize. This is obviously the worst case scenario, but is also a very real scenario as others have suffered this similar fate. If this is our fate in 4 months, then Dr. Liebsch said that there really is nothing more to do except allow Jared to be as comfortable as possible.

The important thing now is that Jared is not at that stage and we will continue to provide him with the best fighting chance we can. If in 4 months the abdomen MRI comes back completely clean we will make our way to Boston a second time for a reevaluation of the tumor. What a great moment this would be, to arrive in Boston to find out the tumor has receded from its original size. Dr. Thiele was very optimistic that Rapamycin would be Jared's lifeline until another option is available. We have no other evidence otherwise at this moment and will embrace this wholeheartedly.

Another chapter of this journey is coming to an end and we thank you all for your love and support. Please continue to pray for our son. These upcoming 4 months may be the most important span of care that Jared will receive up to this point. We are uncertain about Jared's future at this moment, but we have definitely learned to appreciate the present a bit more. Prayers have been answered, aching and stressed hearts have been calmed and our faith in a loving God has been strengthened. God bless all of you, who are right there along with us. We love you and pray for the Lord to bless you in your lives for your unending love and support displayed to our family. We look forward to returning to our home Friday.

Friday, September 4, 2009

Reality Check

Well, what we had thought would be a routine CT scan turned out to be quite a bit different. This is not because of the results of the scan, because we do not know the results. The big difference came in all of the preparatory work that was associated with the scan. We arrived at the Proton Center at MGH and were informed that, even though they were still unsure if they would proceed immediately with radiation, they were still going to treat the CT scan as if they were preparing for proton beam treatments. Due to the sensitivity of the location of the tumor, they typically prepare a mask for the patient to wear. Now, if there was any doubt about Jared's super hero status, let it be known that he now has a mask that molds perfectly to his head. All it needs is a little color and an insignia and he is set.

Creating the mask would be a pretty frightening thing for a 7 year old, but to curb the fears they laid Jaime down on the bed first and went through the mask creation process. All the kids were able to try Jaime's mask on after it was complete and Jared actually appeared a bit excited. We hammed up the super hero thing pretty good for him and he seemed to enjoy it.

After the mask was created we sat down with Dr. Liebsch and discussed the tumor and proton beam treatment. I think Jaime and I have sort of slipped into a type of euphoria over the past two weeks as we have watched Jared's condition stabilize, or so it seems. This discussion with Dr. Liebsch came as a reality check for us. We discussed all of the potential side effects of the radiation as well as past cases of radiation treatment on other children. Long story short is the fact that unlike other tumors, once the chordoma is treated and killed, it does not breakdown, but remains where it is, as scar tissue. I don't know what implications this has, but it is definitely better than having it sitting there expanding aggressively. They are also unsure about the effects of treating Jared simultaneously while on Rapamycin. They have had cases of children experiencing serious vascular complications during treatment while on chemotherapy drugs and I am sure they are concerned about the unknowns in Jared's case. The vague, but unsettling piece of information for me was the fact that once radiated the tumor doesn't typically recur in the same location, but will make home somewhere else, if in fact it does show it's ugly face again.

Maybe Rapamycin holds the secret ingredient for treating Jared's chordoma long term, but it is just too early to tell. We are awaiting the CT scan results and hope to have something today, before a holiday weekend. Jared was required to use the mask during the CT scan in order to create treatment quality images. They placed Jared on a table and positioned the mask over his face and fastened it to the table. You can imagine the crazy thoughts that would go through a child's mind with his head strapped into this machine. He did not find this experience fun at all, to say the least. First, he couldn't breath then his face itched and then it was choking him. My heart ached for him, but at the same time I had to get very stern with him and assure him that he was in fact breathing and was not choking. Dr. Liebsch very kindly wiped off all of the itching with a wet towel and was very patient through the whole process. Finally Jared was secured and ready to go. He sure has had his portion of life experiences over the past number of months.

Overall Jared's spirits are very good. He is joking, laughing and playing a lot more now that the kids are here. The youthful, carefree attitudes of his siblings may prove to be the best medication yet. They are a riot to watch and a blessing to have together. Thank you to all who have made this possible. I do not have results from the scans, but we will post what we know following any news. We love you all and have felt your love and prayers on our behalf in full measure. We know that God is watching over us and we have been blessed and uplifted in our challenges. Thank you and God bless you all for your love and service.