Latest and Greatest Updateii

Up until Weds our main goal was to get food into Willem and have him keep it down. Some days were/are better than others.

During this time he kept up with his school work, spent time on the 11th Floor in the playroom, walked his laps, had a slight meltdown on Monday, had chemo on Monday, etc. On Monday he also asked me to find a man with a screwdriver. I asked him why and he said, "so he can come and fix me". Well, I found a screw drive and he put it on his "sore spots"  and did a couple of turns and he in fact felt better. The power of the mind in healing continues to amaze me. It is powerful and something I have been talking to him a lot about. He is starting to get it, that he and his attitude are major contributors to his healing.  Pretty heady stuff for a 10 year old, and he understands it and is trying.

Yesterday he had his NJ (nasal) tube removed and a GL (gastro) tube installed on his left side by his stomach.  This is a full on operation and he was a bit anxious about it, but between family and staff we were able to explain and calm him down. He just wants to "get fixed".  The operation was a total success.

He will get his meds and food through this "button" that opens and shuts and staff or family simple connect  into it and off we go. He has been throwing up sometimes when he gets his meds because he feels the sensation and it made him gag. This will be a thing of the past With no NJ tube he will have a clear real  food passage as well.

Per the doc our number one goal is to get calories into him. To that end Willem is going to "graze" all day on small amounts of soft food to keep his intestines, gall bladder, etc. functioning and exercised.

We are very hopeful with this new process that he can put some weight on and get stronger. He came in at 80 lb., was down to 60 lb., and is now around 63 or so.

The best news of yesterday concerns his bone marrow. It is almost completely normal and void of the HLH. There are still some active "histeos" in there, but staff feels with continued treatment these last few will be eradicated soon. Five weeks ago this was not the case. So- he IS GETTING BETTER-the tests prove it..  We can think of no better news, except of course the words, "Willem can go home" which is now on the horizon for sure.

Tomorrow he goes to school for pictures in the morning,  (without an NJ tube!), will visit his classroom,  and then we are going to the Halloween party for for weapons for his "Scream" costume that he was wearing around the hospital on Tuesday!

Signing off- Keep praying and go hug your kid, grand kid, loved one. As John Lennon said years ago, "All we need is Love". It too is powerful. Take Care all