http://blog.cure4simon.org/ en Copyright 2007 Fri, 24 Aug 2007 16:07:53 +0000 http://www.sixapart.com/movabletype/ http://blogs.law.harvard.edu/tech/rss Celebrate this Special Day Simons 2nd Birthday. Happy Birthday little man. We love you so much. Let us run with patience the race that is set before us. hebrews 12:1 KJV So true to be spoken when you are thrown into a life of transplant. You must be patient to let the new cells grow and get strong enough to do their job. So we wait with patience and hope and prayer. May the coming year score high in a life lived by the grace and blessing of God. We sure have so much to be thankful for. Simon is well and thriving and laughing and talking and loving life. His donor cells this week are very stable and good. He is battling diarrhea again but he will recover as he has. May good health continue to bless him on his 2nd birthday and beyond. We planned on doing some fun things today outside but the weather here in the midwest has been less than cooperative. We actually were caught inside toys r us yesterday without lights and winds 75 miles an hour flying past the store. Next time you are in toys r us look up at the ceiling and imagine the roof being ripped off, that is what I was doing for 30 minutes while we were held up there. It was quite frightening and we were without electricity until 7 pm last night so the whole day was a bit crazy. Today, we hope to just be and do whatever comes our way in between the approaching storms. We pray everyone is safe and dry and their basements are not flooded. God Bless. Do us a favor and take a few minutes to pray for our sons complete healing and future health on this his day of Birth. Thank you all for continueing to follow us -- we are SOOOOO blessed. School starts next week, we met the girls teachers yesterday at the park and we are all very excited. Lots of change Lots of positive vibes. :) http://blog.cure4simon.org/2007/08/birthday_wishes_for_our_little.html http://blog.cure4simon.org/2007/08/birthday_wishes_for_our_little.html Fri, 24 Aug 2007 16:07:53 +0000 So far today has been a great day. The girls and I were able to meet friends at a splash park (something we really have not done all summer) due in part thanks to Dale who came to hang out with Simon through Ryno Kids Care, thank you so much. It was so great to see the girls having fun with their friends like summers should be yet so hard to leave Simon home due to the heat and fact that there was a water park there. He was saying no mama I come to anderson too. I almost cried walking out. But he had fun and managed to forget us quickly. We also got a call from Kim, I love her and her bubbly voice when she has good news and our counts are stable at 96%. So we are happy and are continuing to drop the cyclosporine level this week with the goal of having it totally gone by end of OCtober so we can see what his new immune system will do. Please pray the donor cells continue to stay stable so we can move on to other issues like lack of sweating. I talked with the NFED (NFED.org) and they are trying to send us out a used cooling vest for simon to use for now to relieve some of the issues associated with not sweating and being outside in 90 degree heat with 100% humidity. So we are waiting for that to arrive. That will be the next step to focus on for simons well being. He also is sprouting a few new shark teeth. I keep hoping they will be big enough to cap or do implants someday. For now he is adorable and happy and healthy. Thank you God. Simon has to have a mole removed in October that has been evolving on his leg and we just want to get it off before it causes us any further worries so pray that is clear and nothing for him. So we will wind down the summer with dad being off a few days and us trying to do a few fun things with everyone with caution of course and then its the start of full day kindergarden for the girls. BIttersweet feelings there. It will be the first time in the girls lives they will not be together and that is hard for all of us. Well enjoy the weekend. Simon http://blog.cure4simon.org/2007/08/splish_splash_and_good_counts.html http://blog.cure4simon.org/2007/08/splish_splash_and_good_counts.html Wed, 22 Aug 2007 20:20:52 +0000 This week I am turning two, on Friday actually but my mom and dad had a Birthday party for me on Saturday and it was so much fun. I got to hang out with my cousins and aunts and uncles, grandparents and my great grandma. It was really nice to be with all of them because its been a long time since we were all together. I even got alot of cool new toys and some clothes and jammies. I was so happy. Running around and just hanging out with my cool crew of boys. I'm feeling pretty good besides my rash and a little problem with my "guy" but I will see my girlfriends at stem cell tomorrow for my iv meds and count checks so continue to pray for me because I really appreciate all of the prayers. Its been a bit of a rocky start for me but I have been doing good and I will continue to heal. Thanks for always checking in on me. I'm so lucky to have so many people who care and pray for me. Come on sissys cells be stronger tomorrow. Good Night. Simon http://blog.cure4simon.org/2007/08/its_my_party_and_i_laughed_and.html http://blog.cure4simon.org/2007/08/its_my_party_and_i_laughed_and.html Mon, 20 Aug 2007 03:26:25 +0000 Well we had a bit of a rough night last night with Simon and I should be exhausted but I can't seem to fall asleep tonight. Simon has been having some itching issues which are not unusual with his skin but it has gone to his groin area and last night he was miserable and threw up at midnight. He rolled and tossed all night long saying "mama it hurts" and grabbing down there. I spoke with the docs today and along with the hurt he has almost pimple like dots, and no appetite. They are thinking he may have a fungal skin infection as the bumps are in his areas where there would be moisture, providing he actually could sweat. Regardless this is where fungus would set in. We have started nystatin cream and upping one of his current meds dose and are hoping for relief. So far he is sleeping peacefully after being up all day with no nap, he should be exhausted. We ask for prayers that whatever is going on be resolved with the cream and move on. Please pray for that for him. Our prayers go out to all the boys undergoing this through transplant with affects and issues and for those who await transplant and for our dear family who still grieves for their son. We are all here together no matter what the situation, we all have sons with NEMO and we all should lean on each other no matter what. God Bless everyone that they may be strengthened. http://blog.cure4simon.org/2007/08/skin_infection_arises.html http://blog.cure4simon.org/2007/08/skin_infection_arises.html Wed, 15 Aug 2007 04:59:59 +0000 I had hoped to post some photos today with Ryne Sandberg as we were invited to and attended the Kane County Cougar game today which they were playing Rynes minor league team and we were invited by his foundation Ryno Kid Care to join them but for the first time really I experienced first hand how much Simon cannot tolerate the heat because he cannot sweat it out of him. He pretty much took a plunge 20 minutes after we got there (the fact that he has been up since 6 am without a nap didn't help) but today was way too hot. We arrived late in hopes of making it to the end to meet, take photos with and get signatures from the great former Chicago Cub player but we just couldn't put Simon through it. So the things stayed for signature and we left. We hoped at the very least the heat might sock some of simons congestion out of him but we'll have to see. After some air conditioning, food and a much needed nap he was back to himself talking non-stop. We will be celebrating his 2nd birthday this weekend with family and oh what a two years it has been. He is excited about it and his cake and the fact that is his birthday. He keeps saying "my birthday is coming" and then hums bob the builder song as that is what will be on his cake. too cute. We go back to stem cell for another iv infusion of meds on the 20th and vntrs so since we lowered his immune suppressant we pray they are still up. He is having diarrhea too so we hope that slows down as well. Stay cool and next time your all sweaty and your body can do what its suppose to to cool off think of Simon and how it must feel to not be able to do that and all the heat stays inside. I can't imagine it and we need to figure out a way to keep him comfortable, the spray bottle isnt' cutting it. sounds like a cooling vest is in need, afterall he keeps telling us he wants to play soccer so ..... thats in our future. God Bless, keep praying. Thank you. Tracy and Dave http://blog.cure4simon.org/2007/08/cougars_and_the_heat.html http://blog.cure4simon.org/2007/08/cougars_and_the_heat.html Mon, 13 Aug 2007 03:15:29 +0000 WHEW, counts are in and they are up. YEAH. I'm starting to get a little crazy about these numbers and I realize its all in God's hands and I just can't do anything about it so I will relish in the next two weeks and keep my prayers going and let my faith be in him to heal Simon. No b cells were detected again. I was told none were detected in any of the kids this week so that might be lab error, who knows. Sometimes I wonder if our wonderful nurse practitioner trys to just keep me sane and make me feel better. Whatever the case I thank her for all her diligent work and feeding into my needs because she honestly keeps me hoping. We are lowering the cyclosporine to .5 twice a day. We are still .2 away from where we started it before we had to bump it to the sky but every 10th we go down is one step closer to getting off of it and letting the new immune system work. Simon is still miserably congested. He ate like a champ today though despite it all. Gotta take the good with the bad or vise versa. He and his sisters were having a ball tonight running around and playing and dancing to radio disney, they love that channel (frankly I know more of their songs than any for my own age) and we had a fun night. I hope tomorrow brings more healing. Continue to pray for our little man and his healing and huge donor cell numbers as we lower the immune suppressant. Keep all our NEMO boys in your prayers. Connor started his transplant in Cincinnati and he and Jacob are now there so pray for them and their families. Our cirlce grows.....Okay I have to go I still have to work but thank you to Dale for her two hours playing with my kids today it definately helped me get a head start on my night time work. God surely has blessed us with angels. God Bless. Tracy and David http://blog.cure4simon.org/2007/08/up_down_up_down.html http://blog.cure4simon.org/2007/08/up_down_up_down.html Thu, 09 Aug 2007 02:17:20 +0000 I had forgotton how spending a very long day at the hospital can be very draining. We started our ivig today and about 30 minutes into it simon started to get red and break out. Strangely when we stopped it it started to clear. I headed down for the g-tube change and went back up to stem cell for a skin check, since it looked a bit better we decided to go forward and restart the ivig. His igg was a little lower so we all felt he might need it and since he has this cold, with a bad cough but clear lungs we wanted to give him the boost that hopefully the ivig will do. We made it through that and his skin looks ok and we even made it home for dinner. I'm tired. The labs (cbcs and stuff) are about the same and we will know vntrs and maybe the fish test to see male vs. female cells to see how strong the donor cells just might be and hopefully by then I will have some anxiety relief and we will have good numbers so until then please pray for that. The antibody test is still not back. Please pray simon beats this cold and it doesn't get worse and that his skin stays clear along with awesome vntrs of all donor cells. We so appreciate the prayers and we know you are doing them with your hearts and love so thank you. Update you when the info comes to us. God Bless http://blog.cure4simon.org/2007/08/i_had_forgotton_how_spending.html http://blog.cure4simon.org/2007/08/i_had_forgotton_how_spending.html Tue, 07 Aug 2007 01:18:36 +0000 Well we have waited out almost 2 weeks to get to clinic on Monday and thats been pretty tough. I'm praying the numbers are way up of donor cells in every area on Monday and that the ivig Simon receives causes him no harm. We will have a long day at the hospital due to ivig and then he needs to get his g-tube changed out after that. He has had some signs of being very tired and some of his stooling is much looser indicating to me that something is going on, just not sure what. Marriana has a summer cold and just today Isabel and Simon are both stuffed up with runny noses and isabel is complaining of stomach aches. Simons appetitie has decreased but I am trying to give that the old "hes a two year old" talk and he has a stubborness that I can't seem to break. He eats when he wants and what he wants. I am adding a little extra pedisure for fluids and calories. I hope he has not lost weight. So tonight we were blessed with a very special visit from Antionette and her mom Camille. Antionette is a 9 year old daughter of a friend of mine who has blown me away the last few weeks. She decided she wanted to do something for Simon and drew, colored and painted pictures and then taped them all over her house and told her mom to invite family and friends over to buy them so she could give something herself to Simon. Wow! What an amazing little girl to think so much of one little boy. Well tonight her and her mom came over with princess coloring packets for the girls and a motorized car (that was antionette's and they wanted someone special who would love it to have it) for Simon which he took to right away. He also loved Antionette from the second she walked in the door. The girls warmed up quick to her too as she kept asking them for hugs. She is a very loving, happy little girl who you could tell just loves kids. She was happy to hug and love up all three of our kids and it was a sight to see and bring tears to your eyes. Simon couldn't get enough of her laughing and hugging him. He is such a little flirt. She also brought a very touching, loving letter, and the money she raised from her artwork. Thank you so much for the warmth and love you brought into our home tonight. We feel so blessed to have such amazing people in our lives helping to make it all seem so "normal" and uplifting. Check out the photos Simon is loving the car and Antionette. {Please pray as we enter a new week that our numbers are up and stay up, that we stay infection free and that we can get through ivig without any skin reacations. Please keep Jacob in your prayers for healing and a break from the rough road he has been on and his parents, and for Connor and his family as they just begin this journey. God Bless. Tracy and David http://blog.cure4simon.org/2007/08/angels_and_blessing_all_around.html http://blog.cure4simon.org/2007/08/angels_and_blessing_all_around.html Sat, 04 Aug 2007 03:29:59 +0000 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. http://blog.cure4simon.org/2007/07/im_so_sick_of_the_rollercoaste.html http://blog.cure4simon.org/2007/07/im_so_sick_of_the_rollercoaste.html Wed, 25 Jul 2007 21:10:17 +0000 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 http://blog.cure4simon.org/2007/07/reflection.html http://blog.cure4simon.org/2007/07/reflection.html Fri, 20 Jul 2007 22:01:29 +0000 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 http://blog.cure4simon.org/2007/07/hello_everyone_i_have_had.html http://blog.cure4simon.org/2007/07/hello_everyone_i_have_had.html Thu, 12 Jul 2007 05:23:52 +0000 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 http://blog.cure4simon.org/2007/07/idf_confmeeting_our_nemo_famil.html http://blog.cure4simon.org/2007/07/idf_confmeeting_our_nemo_famil.html Thu, 05 Jul 2007 19:54:24 +0000 Sorry I have not updated here. I have been trying to fix our computer. Things are going relatively well. We are still down a pound and cannot get Simon to drink to save our lives so I'm going to have to start putting liquid through the g-tube and hope it doesn't affect how he is eating because he continues to eat quite a bit without trouble which is such a blessing. I hope the liquid resolves itself and Simon starts to love drinking as much as eating. His IGG is up to 505 which is awesome and tells us he is making his own even without having the ivig infusions. We are to start tapering cyclosporine again so please pray it does not affect Simons donor counts. We did vntrs yesterday so will have them back this afternoon. Pray they are up and stay that way even with starting to take him off the immune suppressant. So that is about it here. We are scheduled to go to clinic next Tuesday for pentamadine infusion and to meet with the immunologist and then we leave for St. Louis for the IDF conf. We are excited to be meeting two other NEMO families there and Dr. Orange who is constantly researching NEMO. Please pray all goes well and that we have a successful, safe trip full of information and fun. Thank you and God Bless. Tracy and David http://blog.cure4simon.org/2007/06/things_are_well_for_the_most_p.html http://blog.cure4simon.org/2007/06/things_are_well_for_the_most_p.html Tue, 19 Jun 2007 16:41:14 +0000 I have not felt this lighthearted in such a long time. I think today I feel happier than I have been in almost two years. The stress is lifted because Simon is doing awesome. The TPN is going well and he is tolerating it but also it has given his stomach a rest and the diarrhea is gone. It also has allowed us to let Simon feel hungry without us hooking his tummy up to g-tube feeds everynight he is eating like a champ and even asking us for food all the time. My heart is so happy to tell him "no Si, too many cheetos is not good for your tummy". So lets hope he continues to eat in this fashion and maybe in a month we can get him off the g-tube for good. That would be amazing. We now think the elecare and feeds was just too much for his stomach. So we'll see. To top the day off our vntrs came back 96% overall with myloids at 97% so there is a slight increase in donor cells. Like I said we are soooo happy and pray this trend continues. Thank you all so much for praying. Please keep doing that because its helping Simon to have all of you talking to God and believing. Thank you and God Bless. Tracy and David http://blog.cure4simon.org/2007/06/tpn_goes_well_and_appetite_inc.html http://blog.cure4simon.org/2007/06/tpn_goes_well_and_appetite_inc.html Wed, 13 Jun 2007 21:02:32 +0000 After paging the nurse on call at 1:30 am with worry Simon was having side affects due to the TPN and screaming and throwing himself around uncontrollably, we finally got him calmed down at 3 am and got 3 hours of sleep. He woke up very tired and crabby but rebounded once we got on the road to the hospital. We were able to take in stool samples and give another good one while we were there. The one we brought in showed some blood in the stool but they said its not surprising given he has had it running through him for over a week now. We think he is on the road to trying to heal and we will continue TPN for one more week along with giving him food as tolerated and wanted (which seems to be more than before). His skin is looking fine still but his teeth are really bothering him so I'm putting a call into the dentist to see how we can break them through. We had vntrs drawn today so pray they are at least 95% throughout all of this. His other levels were ok, some we need to watch but nothing serious. One interesting thing since all this started since we stopped the elecare (his formula) he has less gagging. Not sure if thats due to him not being so full or what but I have wanted to get him on milk and off the bottle for a long time so this might be a great time to try once we are allowed to give him that again. Again, please pray for good donor numbers and for gut healing for Simon and to keep him free of infection. Also maybe say a prayer that Dave and I might be able to get some sleep. Ha ha. Have a great Monday. Tracy http://blog.cure4simon.org/2007/06/after_paging_the_nurse_on.html http://blog.cure4simon.org/2007/06/after_paging_the_nurse_on.html Mon, 11 Jun 2007 20:00:42 +0000