Saturday Update...

OK...so here's what's happening (medical terms and procedures mentioned below...a warning for the squeamish).

Jacob's disease has progressed into his lungs, liver & spleen to a point where it is risky to have him breathe on his own right now. Before he was placed on the ventilator his respiratory rate was almost triple what the doctors would consider normal for someone his age and size. There is only so much time that can pass with him breathing that fast before it has a damaging effect on his lungs. We cannot risk that, so as bizarre as it sounds it is best for him to be on the ventilator right now. His lungs are getting a level of rest that we could not achieve with him breathing on his own. There are three main things that we have to address, the most harmful of which can be reversed by LCH treatment:

1> Because his liver and spleen are enlarged, his diaphragm cannot pass below a certain point, restricting his ability to take deep breaths.

2> The disease in his lungs is compromising his ability to breathe normally.

3> By Friday fluid had built up around and in his lungs, creating an extra level of pressure that contributed to his fast respiratory rate.

The doctors have drained the fluid in and around his lungs, which has reduced the pressure more significantly than we expected. He is now in a stable state, where we have to allow time for his body to heal and for his levels to come up over the next few days. It is ironic that our main goal is to get him well enough so we can make him sicker via chemotheraphy to attack the disease head on...

We need to treat the LCH with several rounds of chemotherapy. On Friday there was a summit between our Hematology/Oncology (also known as "Hemonc") team and the top three LCH specialists in North America. LCH affects around 1000 kids in the US every year, so we do not have the benefit of large studies to determine the best course of treatment for Jacob. However, there are trends in treatment results that these doctors are able to look at in order to determine the best guess. In Jacob's case we are going to administer two Chemo agents, "2-CDA" (Cladribine) and "Ara-C". We recently read about a girl in California who benefitted from these medications. We can only hope that Jacob's reaction will be the same.

We realize that the Chemo increases jacob's risk for infection, and in his unconscious state there are always chances for issues to arise. But we know that without dealing with the disease there is no way out of this. The length of the rounds of chemo treatments will be 21 days (five days on, 16 days off). We may not see results until the second or third round of these upcoming treatments, so we are in this for a potentially very long haul...

Soon we will explain more about this incredible team contributing to Jacob's improvement. You will simply not believe the level of care that we are so honored to receive here. We are amazed at the level of energy and sophistication that is channeling into Jacob.

We are overwhelmed by the amount of loving communication coming from all of you, and we so appreciate your prayers, gifts, and messages of support.

We love you all...more to come...