We are grateful to be Home!

As you know Willem left the hospital Friday 11/18 after 100 days!

After getting settled at home he went to school Monday and Tuesday 1/2 day and enjoyed it very much. Just getting to be with his friends and classmates is great for him.

He has a tube port that has two tubes. His "G" tube drains his stomach of bile 24/7. His other tube is called a "J" tube and through this he receives his "feeds" (formula) 14 hours a day and his IV solution 9 hours a day (at night). The G tube is actually placed below the stricture in his upper small intestine just below the duodenom. It is through this tube that he also gets his "meds" twice a day.

He gets numerous (12-13) meds 2 X/day and Erin has done a great job mastering the administration of the meds and keeping it all together. No easy task for sure! She also mixes his feeds, makes sure the pump for his feeds/meds is working (no easy task some days), and oh yes, runs the house-cleans, laundry, food, shuttle driver, etc.

Kaylene from LinCare (the home care provider of equipment and help) was a tremendous help in the very beginning. She came for the first 3 med administrations to show us the way.

Willem has been back to hospital twice for for "clinic". He was there Friday for blood draw and analysis. His numbers are all where they need to be and his chemistry (lungs, liver, kidney, heart, etc.) are all great and were they should be as well. This is more good news for our hero!
Tomorrow he goes back for his chemo and other drugs.

Right now we are waiting to see if the meds will be able to open the stricture. Three weeks ago the doctors told us they would like to give it another two months. We are also waiting for the results of some tissue that was sent to the pathologists in Cinci, OH. It had been a long wait so hopefully we will find out status of that tomorrow.

Also, blood work has been sent to Mayo Clinic (Dr. Abraham) for more testing. She did some intitial work, but is doing more now. She and her team are looking into his "natural killer" cells (we all have these cells). These cells attach themselves to the infected cells through a protein called CD107A which is "absolutely necessary" for the NK cell to attach on to the infected cell and allow the NK cell to attack the infection. They want to make sure at the cellular level that Willem's NK cells are functioning properly. It's all pretty amazing and complicated. We will not have info back on this for 5/6 weeks.

During all this Lili has been going to ballet, tap, and cheer. Wyatt has been doing soccer, basketball, and Cub Scouts (selling popcorn) and generally being Kids. He begins floor hockey tomorrow in place of Bball (his choice!) Both are doing well given the situation. It is Wyatt's birthday (8) on Dec. 9.

Willem can't eat anything by mouth except a small piece of chocolate once a day that he can suck on. When at school and it is snack time this is his snack. Thanksgiving was a little tough, but we scaled way back and did a very small turkey and had turkey sandwiches that Willem made for everybody. We went around the table and asked all to share what they were most thankful for, Willem said "being home". He is where he needs to be for his next phase of recovery.

Keep out little 10 year old hero in your prayers. He is not out of the thing yet.