cure4jack

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.

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.

Good News is Jack is holding true to form and baffled another Doctor. Dr. Bunin says she retiring now, Jack has done her in. Great News is we got the results of the VNTR (what it stands for I don't know). But it the test that tells what percentage are Jack's cells and what percentage are the donor cells. Now if you remember the throw a Hail Mary Blog from 4/19/06, I said that the last VNTR was 1/3 donor cells & 2/3 Jack's cells.
I guess all of you have been saying your prayers, knocking on wood, and walking around with your fingers crossed because it's is working. I bet you can't wait for me to tell you the answer? I will, but you have to keep doing all of the above. We are able to see the clearing through the trees. But where not out of the woods yet.
95% DONOR CELLS 5% JACK'S CELLS YES YOU READ IT RIGHT 95% DONOR 5% JACK. YIPPEE, YAHOO, HOORAY. I was almost speechless when Charlotte told me. Thank the Lord above, and Thank you all for the prayers, the knocking and the crossing. Please keep it up. Lets pray for 100% and no set backs. Jack is like that old commercial "we will sell no wine before it's time". He must have himself confused or something. He has his own playbook and is going to call everyone of them before he's through.
So our next trick is to persuade Dr. Bunin to stay on for a little while longer. She has see Jack through till the end. I think if we can get Jack to smile at her and ask her nicely she might stay. We need to get to 100 cells on one slide and not require platlets for 2 or more days and then we might be able to get paroled to the halfway house (the apartment), then go for every other day for check ups. After that homeward bound
Way to go Jackie boy!!!!!! Keep it up

One other shout out Happy Birthday to Andres Trevino who is responsible for creating the website and the blog.
The Hagelin's wish you many more Happy & Healthy.

Keep praying , knocking & crossing; it's working.