January 2006 Archives

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.

Well, this is the meeting we have all been waiting for. Jack had IVIG's on Wednesday and after we finally met with Dr. Bunin the Stem Cell Specialist. She sat down with us and went over the procedure for the transplant, in detail. As some of you know, this procedure is very risky to anyone but we made the decision and are going with it.

Jack will be admitted on March 07, 2006. I know we had previously said that Jack's transplant will be in January, but be that as it may, it has taken longer to get this all together. As far as we know Dr. Bunin made contact with the donor bank on Thursday and the donor bank will be contacting the donor. Once the donor is contacted they will go through a screening and if everything is ok, we will proceed as planned.

Jack will have to go through a series of preliminary tests, as well. Once admitted we will have a new G/J tube placed and he will get a Central Catheter place in his chest. They will be using 3 types of Chemotherapy over 8 or 9 days. One day after the last dose, Jack will recieve his new stem cells. Dr. Bunin said the stem cell transplant is actually very anti-climatic, but what happens after will be. They will be running blood tests daily to watch Jack's immune system start to elevate which is called Engraftment. Engraftment is when the new stem cells reproduce all the white blood cells, red blood cells and platelets into the body. This occurs when new white blood cells are detected in the bloodstream. The timing of engraftment varies and it usually occurs within two to four weeks, but may take up to a couple of months. During this time as the body starts to rebuild the blood cell supplies there is a big risk for bleeding, infections and fatigue. The skin and mouth are common sites for infection so personal and dental hygiens is imperative.

The most serious side effect is Graft vs. Host Disease (GVHD). This occurs when specialized white blood cells in the donated bone marrow (the graft) identify your cells (the host) as "foreign" and launch an attack, just as your immune system would normally attack infection. The doctors never say "never or always", but are very confident with the donor and with Jacks age that GVHD doesn't occur.

So, if everything goes well, we will be in the hospital for approximately 4 weeks but we will not be coming home right away. We are planning to stay within the area at least 4 weeks after. Jack will need blood tests weekly and will need to receive IVIG's every 2 weeks to begin and as his immune system increases the IVIG's will become less frequent to eventually no more treatments.

Of course we are a little nervous, but we know we have made the right decision. Since there is not enough known about N.E.M.O. cases other then there have been at least 40 cases diagnosed but less then half are still living. As far as we know there have only been 3 children who have had the stem cell transplant and 2 are definitely doing well. Jack will also be the first N.E.M.O patient to have the stem cell transplant without a sibling being the donor. Like we said this is risky for anyone, but these specialists have been doing stem cell transplants for years without a family member donor. This is a chance worth taking because we know that without it, Jack will be on IVIG's and steriods for the rest of his life and the steriods themselves have many more risks.

Thank you all for your continued support and prayers. We are looking forward to Jack having a very successful transplant and living a long healthy life.

Jack has been going to school once a week at Stevenson School in Fairfield since October. He attends the handicap preschool and just loves it. Each Wednesday that he goes, I drive him and pick him up. This week Jack decided he wanted to take the bus home for the first time. He absolutely loved it. His bus driver is Miss Kim, who was also Christina's kindergarten bus driver. Hopefully this will be a trend.

We're saying good-bye to 2005 and saying hello to 2006.
Here are some of the things we encountered in 2005.
- A Diagnosis
- A wonderful group of caring doctors
- Jack having a stroke and a full recovery
- A successful fundraiser
- Incredible amounts of people who have shown their generosity through donations
- Eight months with no hospital stays
- Christina recovering from her broken arm
- This great website designed by Andres Trevino
- The stem cell team finding a perfect match for Jack
- Being contacted by the Discovery Health Channel to put Jack's story on Mystery Diagnosis (thanks to the Trevino's)
- The "Found N.E.M.O-Finding Cure" Foundation has finally been established as of the last week in December
- Christina being a GREAT big sister
- A very nice Christmas...........
- And, the loss of a great man.....Jack's grandfather.....Opa...Salvatore J. Malfitano

We are so looking forward to a "healthy" and successfull 2006. There are going to be some tough times ahead, it's going to be very difficult for us to travel down to Philly for 6 to 8 weeks and leave Christina behind, but she is such an adaptable child who truely wants her brother to be better, so please remeber to email her while we are away from her. She loves to get and write emails back, so send emails to Bubbagirl98@aol.com.

We were just contacted by the Stem Cell Team in Philladelphia and the plans are starting to be made for Jack's transplant. The doctors had their meeting on December 5 and all the doctors who attended were very happy with the game plan and especially that they found a perfect match for Jack. We were also told that Jack will be the first N.E.M.O. transplant that a family member is not the donor, but the team is very enthusiastic about the donor they found. Our meeting with the team is scheduled for January 11 and we will get all the specifics for the transplant, so keep checking back on the site for the details.

Thanks again for all your continued support.

Thank you Cheryl Cavenaugh for making the "Found N.E.M.O.-Finding Cure" Foundation possible. You are an amazing woman/friend to take time out of your busy life to put it all together.

Everyone please keep checking the site for details for The Foundation.