Recently in NEMO Category
We haven't written anything about this yet and we now decided to let you all in. Some of you already know, but most of you don't. Back in November we were contacted by a company called True Entertainment in NY about having a documentary made on Jack's diagnosis. The show is called "Mystery Diagnosis" and it's aired on the Discovery Health Channel. Since then we've had several tapings for the show. In December we went to "Silver Cup Studio's" in NY for the initial interviews. We had a really long day, both Roy and I had 3 hour interviews as well as Christina having a short interview and our good friend Julie (bubbles) being interviewed. After that in February, we met them down in Philadelphia to have a taping done in "Day Medicine" where Jack recieves his IVIG's as well as taping with Dr. Orange. The next tapings were done last week here at home for the playtime with the kids as well as giving Jack his med's and our daily routine. And, finally, we finished up yesterday with Dr. Levy at St. Barnabas Hospital. We were told that the show should be aired on June 12. I will blog again when we get closer to the day and time the show will be aired. I give a lot of credit to actors, it's a lot of work. It can be grueling at times. We are very excited about the show to be able to get awareness about the NEMO diagnosis as well as tell everyone what we've gone through to get it. The show will not be long. They do 3 diagnosis for each "Mystery Diagnosis" hour, so for the many hours of taping it will be edited to about 15-18 minutes. Watch for the repeats they are showing now to get an idea of what it's all about.
Transplant Info
On another note, we are starting to prepare for Jack getting admitted on Tuesday March 14th. We spent the day in Philly on Tuesday for Jack to get his pre admitting tests and we will be going back on Monday the 13th to get a couple more tests done and if all is well we will proceed on Tuesday. Our nerves are starting to rise and we are starting to get sad about leaving Christina but she will probably be coming down on the weekends or Roy and I will be trading off. The low down of the transplant will be as follows:
Tuesday 3/14/06 Broviac Placement
Wednesday 3/15/06 Chemo
Thursday 3/16/06 Chemo
Friday 3/17/06 Chemo
Saturday 3/18/06 Chemo
Sunday 3/19/06 Rest
Monday 3/20/06 Chemo
Tuesday 3/21/06 Chemo
Wednesday 3/22/06 Chemo
Thursday 3/23/06 Chemo
Friday 3/24/06 Chemo
Saturday 3/25/06 Bone Marrow Transplant
Then we watch, wait and pray for engraphment to take place which could take up to 2 weeks for more.
Please keep us all in your prayers.
Roy and I will try our best to keep everyone updated through this blog. So make sure you check to see what is going on. Roy and I will be able to reached via cell phone or through our personal email address or you can email through the gmail address on this website. Thank you, once again, for your contast thoughts and prayers.
We were recently contacted through Jack's website from a family in another state. I can not mention the family name without their consent, but please know them as the "G Family" and as "Baby S". "Baby S" is 4 months old and recently diagnosed with NEMO. He is right now in the hospital and having a hard time. Could you please remember to keep the "G Family" in your prayers. GOD BLESS.
