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.