Run A-Ground

Today we had some really unhappy and somewhat confusing news. I titled this post while contemplating the similarities of our Journey and one of the voyages of the great Captain James Cook. If you don't know much about him I recommend you read portions of his journal and ship's logs. He is probably one of the greatest explorers in Human history.

Well on one of his journeys he was traveling West bound east of the continent of Australia. Little was known of the region and many historians believe he was the first European explorer to explore the east coast of Australia. After months and months of sailing they spotted land in the far distance. The excitement and joy of seeing land and ending this leg of the journey was beyond comprehension. But before the joy could really set in the ship ran a-ground into the Great Barrier reef. Though they could see the land in the great distance they were as good as dead with severe damage to the ship and only 2 small shore boats, the tide receding, leaving them higher on the rocks.

Today we found out Henry's Transplant Failed.

They took a sample of his blood and tested numerous things. Less than 2% of his blood had the donor's DNA and the rest seems to be Henry's original Immune system. The doctor's said there was no easy way to put it other than the transplant failed.

Basically prior to the transplant they gave him a bunch of drugs that wipe out his bone marrow and then give him the transplant. I guess Henry is stronger than anyone ever imagined because his body's immune system somehow came back and the donor's system lost the battle. All the good things we have been seeing was never the transplant but actually his own immune system returning.

We have a lot of questions....

Even though the transplant failed it is unlikely, yet possible that by wiping out his immune system it has changed (rebooted, if your think of it like a computer) and the LCH has been eradicated. Unfortunately its hard to tell because he is on a drug which suppresses the immune system right now. If they stop the drug it is possible the LCH could flare and then we are in a worse situation than at the beginning of the transplant. It is possible to do another transplant but it would require harsher drugs to REALLY kill his immune system which could be lethal to Henry.

Monday they will do more tests to double check everything and start coming up with the options.

To top all this off, Elizabeth was playing with Henry and tripped on his N.D. tube. The ND tube goes in his nose, down his throat into his stomach, and then a few inches into his Large Intestines. Normally she is really careful around his tubes but accidents happen and when she tripped it pulled the tube out of his Intestines, out his stomach, and then stopped in his throat and started choking him. We quickly pulled it the rest of the way out so he could breath.

So I took the opportunity to take a few quick videos of Henry with-out the Tube in his nose.

Captain Cook and his crew survived the wreck on the Great Barrier reef. His story is amazing and the method they salvaged the ship was ingenious to say the least. We considered not writing anything about this in the blog until we knew more and made a decision but we feel since this is kind of a family journal we would include even the bad news and the feelings we have right now of not knowing what will happen and having our "land" disappear from the horizon.