July 2007 Archives

Its so amazing to me how things change from week to week for us. We have had two weeks of no worry for the most part as we had gotton great vntrs two weeks ago and things have been well. We went to clinic on monday and there was alot of talk of lowering the immune suppressant every two weeks and worry overcame me as that is when we lose our donor cell numbers, or at least there is a pattern of such that is unconfirmed as to what really happens but this week Simons igg went down to 384 (below 400 is when they give ivig which is what supposedly makes him have a horrific rash) so now we say okay he is unprotected and what do we do? take the chance? So that is undecided at this point. Then we get our vntrs and they are down only 2% overall but one of his levels is down 9% and to us that is huge. There is no good explanation and noone can tell us why or what to expect but all we know is that when we lowered his cyclosporine the levels are now dropped. So we have to wait. We were suppose to lower it again I said no. I'm scared to lose the donor cells. Its a catch 22 because if you don't taper it he remains at a significant risk of catching infections because his immune system is still so suppressed. They are running Hflu and antibodies to see if there is any reaction from Marrianas cells and then the decision to give ivig will come, that will be end of the week. I have a restful weekend planned and part of it included some time alone just me and my sister and now I feel so anxious and worried and all I can ask is for heavy prayers. Pray for the donor cells to be stronger than is recording and that he is rebuilding and getting stronger with just those cells and none of his own. This is so hard to live by numbers and to be up one week and feel so down and anxious the next. I need stability and we can't figure out how to make that happen. I ask for prayers of strength and to give our son complete healing. We did receive news that we are being granted a Wish to go to Disney. We are very excited and that will be happening for us sometime in February. Hopefully all here will be solid, stable and we will feel better going. Please pray. Tracy and David. We must lift up to the Lord and ask for strength and peace.

I was doing a bit of reflection the last couple of days as I am trying to get all our insurance things in order and apply for some things that might help with Simons ongoing medical issues and dental care and trying to figure out just how much the insurance is actually paying for all of this and I started to have to relive the early days of Simons illness and all that he and our family went through and I just got very teary eyed. We are blessed to be able to look back and feel we are at a better place in this journey. The road has been hard and we are starting to feel a little peace within in the hope that Simons donor cells are getting stronger and hopefully working to build and be able to fight off things for him. As I thought about all that he has been through and the early days, nights and weeks and weeks of pain he endured and all the nights spents holding him staring out that hospital window praying for a miracle our family is so lucky to be at this spot right now and we do not let one day go by that we don't reflect on that or appreciate all the small things in life daily. We have been fortunate to do some fun things this summer, little trips and even going to the beach last weekend in MIchigan (which was just a day of stress because of worry and Simon stayed confined to my arms most of the two hours we were there) but it felt like maybe we were getting there to where in 3 years he can really enjoy stuff like that. Its very hard to explain all the caution that goes into a normal day in the life for us but all the people who have been there for us have really enriched our lives beyond any experience we could have otherwise gone through. This will hopefully also help other families and boys who have to go through this. Our boys will help to solve some of the puzzles to NEMO. So as we go into clinic again on Monday, continue to pray for strong donor cells and healing. God Bless you all. Tracy

Hello everyone I have had incredible trouble with my computer so I am asking you to visit jacks website (linked through ours) for a great addition by Charolette about the conf and photos to share. I hope you don't mind Charolette. I am also waiting on vntrs, not a call today so I am anxious, hence my late night typing please pray they are strong, solid and getting into working mode. I also pray that Simons igg which was down to 459 this week holds and goes back up, the worries. thanks to everyone and I hope to be as good with pictures and graphics as the Hagelins someday. lots of love and peace Tracy

Well our trip to St. Louis could not have been better. The highlight was meeting the two other NEMO families that I have been in contact with for over a year and a half and their families and being able to share stories and concerns and to lean on each other in some emotional moments. We all felt as if we had known each other all our lives and we miss them all already and are hoping to at least connect in person yearly. We were honored to meet Dr. Orange who has been pioneering the research and treatment of NEMO for the last almost 7 years now. He was even more wonderful in person than he had been on the phone or via e -mail contact. He and his wife are truly amazing people who allow a lot of time to be spent on our cause in hopes of someday preventing other families the pain and agony of emotional and physical hardship tying to help the boys affected by this disease. To date 56 cases have been reported worldwide. We found out Simon is the only one with this specific mutation. He falls on the genetic mapping chart at the end of the mapping and that puts him in a severe mutation category. His biggest demise would be micro bacterial infections which once his immune system starts to function should be a worry of the past for him. We all know the transplant will not fix the NEMO in his other organs, skin and so that will leave him with skin, teeth, and the lack of sweating as well as the eating issues which seem under control and we hope it stays that way, as major issues for him. Still in all, if we can conquer the non functioning immune system, the rest we can deal with.







Simon, the girls and Dave, myself and Daves mom all had a good time. We were able to go to a party for the kids and then attend a cocktail evening for ourselves and the IDF also threw a party at the zoo after hours for all the families. We were able to meet the woman whose son was the “boy in the plastic bubble” and hear her story to the point of shedding tears and realizing we are in a group of people who have put forth a lot of sacrifice to find cures to help others and make life better for the future. Immune deficiency disease is really a complex disease with a lot of unanswered questions and issues that all affected by it deal with without answers. So we were also able to tour the St. Louis Arch and hit Union Station with the kids (simon and I walked the park while everyone went us in the arch as I had done it a long time ago and wanted Daves mom to enjoy it). It was a good trip, all went well, we are all home and getting back into the routine and getting ready to celebrate the girls turning 5 this week with fireworks and princess dress up parties to get ready for. We forge on and continue to hope and pray to prevail. God Bless and our vntrs were 96% without b cells again so pray those cells surface next time as it makes me very nervous not to have them. We have to thank everyone who has helped us out in the last several months trying to make life easier for a confined family. Thank you all so much. Happy 4th . Love Tracy and David