Cure 4 Jack

Cure 4 Jack http://blog.cure4jack.org/ en Copyright 2007 Wed, 15 Aug 2007 13:54:00 +0000 http://www.sixapart.com/movabletype/ http://blogs.law.harvard.edu/tech/rss Pray for Conner We would like to request that everyone prepare their hearts and minds for a prayer vigil on Wednesday night at 9:00 p.m. to specifically uplift Conner for his bone marrow transplant that is scheduled on Thursday. Please take some time Wednesday evening to come to your knees, bow your heads and storm the gates of heaven for this brave young man. We truly believe in the power of prayer, so please pass this request on to anyone and everyone you know. “For where two or three come together in my name, there am I with them.” Matthew 18:20 ]]> http://blog.cure4jack.org/2007/08/pray_for_conner.html http://blog.cure4jack.org/2007/08/pray_for_conner.html Wed, 15 Aug 2007 13:54:00 +0000 To my NEMO families from Charlotte I have a daily routine which consists of me starting the day by going to my computer and reading all the updates on all the boys and their families. Which actually means I log on to our website and see my Jack and then follow through to all the boys listed on our main page. It is very frustrating for me to read what is going on and sit here and be quiet. I don't think anyone can ever understand what this feeling is. I know each and everyone of you have suffered from the emotional rollercoaster to finding out about the NEMO diagnosis and the realization of what NEMO is all about. Still yet, there is so much information that needs to be found and WE as family members who suffer from the rare condition can truly only rely on each other for life experiences to getting what our children need. I have also realized that there are more families who have been diagnosed and honestly I am very envious of all of you who have made contact with these families. I have a feeling that these new families are hesitant on contacting us because we lost our Hero. What can I do or say to make everyone understand that even though we are mourning Jack, we are here for each and every one of the NEMO families. Roy and I have so much information to share and by sharing this information we are keeping Jack alive. We have a lot of work to do. We are trying our best to get our heads together and work at launching the foundation to be able to be an informative and supportive place for ALL the NEMO families to gather and not feel alone. Every NEMO mutation is different from the next and each child is affected differently. The only common denominator is the diagnosis. I am reading and listening to all the families and I try not to compare what Jack experienced, but I can compare the emotional sufferings of being a parent. I am an advocate for the patient. The doctors are there to use their knowledge to do everything possible to keep our children comfortable and relieve them from any of the medical issues surrounding the affects of their mutation BUT we are still the parent. Those are our children sitting in the hospital beds. Yes, we don't have the medical background, but we know our children. We have to ability to express what we feel and truthfully we have the ability to tell the doctors those feelings. There were many times when I didn't like the course of treatment or what was happening and I let the medical staff know and I was usually right. I kept my son alive by staying on top of the doctors and questioning every little thing. Yes, I didn't know medically what was going on, but I asked questions upon questions and didn't move forward on anything until I understood. Granted if Jack was in any kind of life threatening circumstance I wouldn't dilly dally on understanding and I left it to the professionals. This diagnosis is such unchartered terrirtory and not one doctor knows enough, they still have to rely on each other to express their experiences of each patient to learn from. Just because everyone seems to be going to the same place doesn't mean that is the place to be. Just because the hospital Jack was in, only had Jack as a NEMO patient doesn't mean that they are not qualified to take care of your child. I have found that there are many competant facilites throughout the US that can be beneficial to your child, but guess what, NOT one facility is flying on their own. Each doctor at different facilities are working with other doctors all over the world. No one is flying this diagnosis without working with another doctor. You can be rest assured that you child will be taken care of where ever you are because the doctors are working together all around the world. And, if your doctor doesn't know you have the right to contact as many doctors as you wish and continue to ask questions until you find the answer. The most competant doctor is the one who says they want to consult with another doctor to find the answer. In Jack's case Dr. Bunin (BMT specialist), one of the most respected transplant doctors in this country, sent Jack's biopsy slides to Seatle, WA to confirm the GVHD in his gut. How can you not respect a doctor who clearly admits that they aren't sure and want another opinion for themselves. To me, a doctor who searches and admits to not knowing everything is a doctor who looks beyond themselves for the answers. I know I rave on our saviour, Dr. Orange, but he is the one doing the research, going to countries all over the world and educating more doctors on what has been found to date and I am hoping that one day doctors will work together to help us do something to keep children from suffereing the way our Jack did. Just remember one thing, Jack was cured. At his death he had a working NEMO. I am a believer in "when it's your time" and I can honetly say, it was Jack's time. He was sent here for us to learn about NEMO and continue to be able to help more children diagnosed. Roy and I are selfish and would do anything to bring our son back, but unfortunately we know it is impossible, but we can work at making a difference for other NEMO families and that is our goal. God Bless all the NEMO families and please pray for all of them. Our friend Conner is undergoing his conditioning for his transplant which will take place in 8 days, Jacob is doing much better in the hospital and Dr. Putnam is performing a scope today. Dr. Putnam was Jack's doctor who made a difference in the turning point of getting his diagnosis. Simon is doing well and his counts seem to be holding. Giovanni's transplant is also holding strong. Samuel and Rhys are awaiting transplant and our pal Andy is the poster boy for success. The Trevino family is incredible and have gone through so much and their efforts are holding strong. We are here for each and everyone of you and we hope that one day we can all work together and be a team for more families. To those of you who have contact with the families who we don't know about, please forward this to them. We want to let everyone know we are here. ]]> http://blog.cure4jack.org/2007/08/to_my_nemo_families_1.html http://blog.cure4jack.org/2007/08/to_my_nemo_families_1.html Fri, 10 Aug 2007 15:34:22 +0000 My Son and My Dad To my Jack and Opa Jack, it's been 4 months since you've gone and we miss you so much. And Dad, it's been 19 months since you've gone. No day goes by without a thought of both of you. We try so hard to keep moving forward and it's so difficult, but we do it. I know that you are both "home" and safe and always with us. I'm so happy that you are together, I'm sure your making lots of trouble, what a team you both are. Not only are you two making trouble, but I bet Paulie, JP and Mark are egging you on. One day we will all be together again. We're doing our best to take care of Oma and she misses you guys so much. Sometimes it's hard to see her by herself, but we try to include her in everything we do and try to keep her from crying all the time. We are going to make you so proud of us. We will do whatever we can to make a difference and your legacies will live on forever. I love and miss you! Til we are together again, Love you, Mommy to my Jack Charlotte to my Dad]]> http://blog.cure4jack.org/2007/07/my_son_and_my_dad.html http://blog.cure4jack.org/2007/07/my_son_and_my_dad.html Tue, 31 Jul 2007 14:59:54 +0000 "Good Morning Jack"....... This is my third entry in a week, WOW, it's been a long time since I've done this. Anyway, I called Roy this morning at work and he said, "go check the guestbook comments" and I said "who commented" he said, "just go check it". One of our typical conversations with questions answered by questions so I went over to our computer and read this most fantastic comment written by a stranger. I know you can all just go into the comments and read them your selves, but I felt the need to post this on an entry in the blog. I also wanted to let the woman know, who's name is Tracy, that we are so touched and want to Thank her for her kindness and always saying "Good Morning and Good Night" to our little Jack!! Tracy, I'm so glad he has touched your life without even knowing him. Jack may not be here with us, but he is living on in our lives as well as us continuing on with fulfilling his legacy. Please read her comment below... Hello, I know you don't now me but I work on Fairfield Road. Everyday I pass your sons grave. At first I didn't understand how Jack passed on. But I saw his picture on the tombstone and breifly saw his first name. Since my first time passing and seeing his name every morning I say "Good morning Jack" and every evening when I pass I say "Good Night Jack" I know I sound nuts, believe me I'm not. So today I passed by after having a conversation with my boss and he told me to write down his full name and google it. Well that's how I found your site. My deepest sympathy's to you and your family. He really was a strong little boy. Jack has an amazing story. It really took my breath away. I read it to my WHOLE office. There wasn't a dry eye in site. I just wanted you to know that your sons story touched a lot of people's lives today. His grave site is BEAUTIFUL. The pictures are just gorgeous of the funeral and especially of his life....And again I am sorry for your loss!!!
Thank You Tracy!!!!!]]> http://blog.cure4jack.org/2007/07/good_morning_jack.html http://blog.cure4jack.org/2007/07/good_morning_jack.html Fri, 13 Jul 2007 15:00:28 +0000 Roy's Promotion Well it's official! Congratulations Roy, We Love you!!!! Today the announcement was made at Roy's work that he is officially the Manager of New Jersey Central Care (Operations) of SCI (Service Corporation International). This has been a long awaited for promotion and I am so proud of him for sticking it out and waiting for it to be given to him. Lots of Luck, Babe, you did it!!!!!!!! My Dear Baby Jack: Daddy did it! Stay over his shoulder and guide him through this journey!! We love and miss you so much! There is not a day that goes by that your not in our thoughts and the memories will last a lifetime. Love you Bug, Mommy]]> http://blog.cure4jack.org/2007/07/roys_promotion.html http://blog.cure4jack.org/2007/07/roys_promotion.html Tue, 10 Jul 2007 00:11:25 +0000 St. Louis, Missouri - Immune Deficiency Conference - New Beginnings! All I can say is WOW! New Beginnings for many things!! Last Wednesday June 27, Roy, Christina and myself set out, by car, to St. Louis Missouri. It was truely a bitter-sweet feeling for us. This was going to be the first for many things. Our first trip anywhere without our Jack, our first Immune Deficiency Conference, the first EVER conference about NEMO Deficiency and most of all the first time meeting other NEMO families all in one place. Incredible!!!! The first ever NEMO Deficiency symposium, included, The Hagelin Family, The Trevino Family and the Gutierrez Family. We set the stage for a beginning to a future of knowledge towards educating not only ourselves but to educate others for this immune deficiency that changed all our lives. We are so proud to be, as Andres Trevino wrote in Andy's Blog, "Pioneers"!!!!!! (please go to http://partnerpage.google.com/andy.org.mx to see first EVER pictures from the conference which reads "A Giant Leap for Mankind".) We also had the pleasure of meeting Carol Ann Demerat, who's son David was born with the primary immune deficiency called SCIDS, you all know who is was, he was "The Boy in the Plastic Bubble". Carol Ann is truely an inspiration. David lived 12 years in a bubble that grew as he grew, he recieved a stem cell transplant, which unfortunately wasn't a success, and she never felt the touch of her son until right before he passed away and here she is 23 years later, giving talks about her life experience with David and educating people. She is where we want to be and we will be. Jack's life will be remembered just as David's is. Also, Carol Ann, having met us only for about 15 minutes the first day we got there, gave a speech Friday evening telling about David's story and preceeded it by dedicating it to Jack. We can't thank her enough for being so kind. There are so many different types of Immune Deficiencies and still yet not enough information and education and research however, once diagnosed people affected can be treated with IVIG, which was Jack's saving grace after being diagnosed yet there are those who have difficulties with their insurance companies covering their means of living infection free. It is a shame how the systems work, but this organization helps make things happen. It helps with those needing assistance in finding doctors, medications and also people, Dr. Orange included, going down to Washington and lobbying to get these issues approved and covered. It was an amazing conference for the amount of knowledge the IDF is able to get out there to those in need. Now, Dr. Orange........what can I say about him???? His NEMO symposium was great. As usual, I interuptted him with questions and probably drove him crazy, but just to be in one room with other NEMO families asking the questions we all have been wanting to ask and getting our answers and making a difference, was completely incredible. He is always ahead of the game and he began his talk with dedicating the first ever NEMO symposium with a picture of our Jack. I so wish some of the other NEMO families would have been able to make the conference and I completely understand why some could not make it, but I am warning these families now, the next IDF Conference will be in 2 years in Disney World (Florida). Hopefully the boys having transplant by the end of this year will be out of the woods and we can be more then 3 famililes making the difference. I will keep all these families in my prayers for good, healthy, successful transplants to be able to board the "Pioneer Wagon". Please pray for all of us to be together. Roy and I also had the pleasure of meeting Marcia Boyle who is the founder of the IDF and we sat with her for a few minutes and told her about Jack and she was very happy that we attended the conference and especially about NEMO. She didn't know about Jack and our expereiences and she has extended herself to us to be able to do whatever she can to help us get as much information as possible and be a part of making the difference. She said she was very estatic when Dr. Orange approached her to do a NEMO symposium and she wants us all to work together on continuing to do talks and getting NEMO out there and educating people. Jack's legacy begins, we want and will work on getting it out there. The conference ended on Saturday and we said our good-byes to The Trevino's and the Gutierez families and told each other we would stay in touch much more then we have in the past. We are familiy, not tied by the bonds of blood, but tied by the bonds of NEMO and most of all, strength. We ended the conference at the St. Louis Zoo. The kids had a great time and we really enjoyed being together as a family. We miss you guys, already!!!!!! Hey, we just have more places in the United States to go visit and our door is always open here in New Jersey, stop in anytime your passing through!!!!!!!! Here are some pictures we would love to share. The First EVER picture of 3 NEMO families, all in one place, the St. Louis Zoo.

Christina with Sopia and Andy Trevino.

Christina with Isabel, Marriana and Simon Gutierrez.

Me and my new NEMO boy, Andy....he refused to talk to me, hug me or take a picture with me until the last possible minute that we were together. He was pulling my leg and teasing me and finally gave in as we said our good-bye's at the hotel.

And finally, the Orange and Hagelin Family (excluding me, someone's got to take the picture) hanging out right before we all left St. Louis. Thanks for everything Jordan and Katie. See you soon.

]]> http://blog.cure4jack.org/2007/07/st_louis_missouri_immune_defic.html http://blog.cure4jack.org/2007/07/st_louis_missouri_immune_defic.html Thu, 05 Jul 2007 11:43:00 +0000 Time to Share with YOU!!! I felt it was time for me to share some of the pictures from Jack's funeral and Christina's birthday that was just yesterday. Please don't get upset, pictures are a wonderful memory and we want to continue to share our life with all of you. You have all been a big part of our lives for such a long time and we will try to continue to blog. Of course we won't be blogging daily, but we will write when we have something to talk about. I haven't asked in some time, but please continue to keep ALL of our NEMO families in your prayers. We have a couple of boys still recovering from transplant as well as some waiting on transplants and all of which who need our prayers. We miss everyone writing in comments, so please write to us. God Bless and enjoy the pictures. Yesterday was Christina's 9th Birthday!!!! (The cake was a "Peanut Butter Bomb", which Christina begged me to make for her. It was filled with Chocolate, Vanilla and Peanut Butter Ice Cream, Pound cake, Peanut Butter Cups and Jelly, mmmmm good!!!)

This was Jack's Firetruck! This was the truck that was Christened by Jack and began his career as an "Honorable Fairfield Firefighter". Here the truck is outside the funeral home at Jack's funeral.

These trucks were also outside the funeral home.

Another one of Jack's favorites, the Pumper, with the funeral banner on back.

This Hummer from the Wayne Fire Department was brought by our friend Ed Laskowski who promised Jack he would one day take him for a ride in, as Jack would call it "the Bummer". Thank you so much Edward!

Fairfield Firefighters waiting outside the funeral home for Jack.

Fairfield Firefighters outside the church as Jack arrived.

Jack's final ride to the cemetary. A true honorable funeral to "Our Hero!" HE WAS A REAL FIREFIGHTER!!!!!!!

The day after Jack's Funeral, the "Fantastic Fairfield Fire Department" remembers Jack.

Now Brace Yourselves, this is Jack's Headstone!!! (Front)

(and Back!)

As always, thank you for always keeping us in your prayers. We are so greatful to have all of you and hope you continue to check in on us. We are moving along, day by day. We miss our Jack, but he is better now, no more suffering, no more pain and no more rides the hospital. Our dear little "Bug", we miss and love you so much! We think about you every day and know that you have no more pain. Your the best, Baby!, Our Hero!!! Love you Always and Forever! Love, Mommy, Daddy and Christina! Our LIttle Goofball!

]]> http://blog.cure4jack.org/2007/06/time_to_share_with_you.html http://blog.cure4jack.org/2007/06/time_to_share_with_you.html Tue, 12 Jun 2007 01:24:05 +0000 Going Back to Work!!! Well, I decided I can't stay home anymore so on a whim I went to one of the local beauty salons and asked for a job. Funny story, I went in and asked if they needed help and the owner wasn't there, so a women who works there handed me a 2"x2" piece of paper to write down a little information about me, how long I have my license and my experience, so I wrote: Charlotte Hagelin my phone number licensed in 1986 for Cosmetology/ Hairstyling licensed in 1990 for Cosmetology Teaching Former owner of Hollywood Looks Hair and Nail Salon formerly on Hollywood Ave in Fairfield last job at Hair Stop in West Caldwell stopped working in 2002 for personal reasons. The owner called me back the next morning and said "I got your note, when do you want to start"? and it was that easy. She also commented that I had quite a resume and I was more then qualified for the job, but I hadn't even had the chance to present her my resume or even meet her face to face, I told the owner that I'd stop by in the afternoon to meet her and talk. So I am going back to work and I start on Friday, May 18. I spent that afternoon cleaning and scrubbing my curling irons and brushes and I have my little bag packed with all my equipment and I'm ready to go back into the working world. Well, not entirely, I'm going to work part-time only 2 days a week and an occasional Saturday. I still need some time to deal with things as well as make up time with Christina, I won't consider full time until the fall so I can spend the summer with Christina in the pool. I'm also thinking about school and maybe even hoping to start in January.... So that's that, I'm pretty excited and Roy and Christina are happy for me. The shop is a block away from the cemetery where Jack is so I can stop and see him on my way to work. Wish me luck!!! http://blog.cure4jack.org/2007/05/going_back_to_work.html http://blog.cure4jack.org/2007/05/going_back_to_work.html Wed, 16 May 2007 21:43:04 +0000 Happy Belated Mother's Day! I'm sorry I'm a day late in wishing a Happy Mother's Day to everyone, but the sight was down for me to blog yesterday, so I am writing today. The evening before Mother's Day I was up in the middle of the night and by the light of Jack's flashlight (miner's headlight) I wrote this: To all the Mom’s I know, To all the Mom’s I’ve briefly met, To all the Mom’s I will one day meet, To all my friends, From the time we are little girls to the moment we conceive, as women we start to imagine and envision our child’s life. We first start with finding the perfect name, that may change several times before the child is even thought of, Then, we envision what goofy outfit we’re going to bring our new bundle of joy home in from the hospital, for one day the child to say “Why did you dress me in that?” We envision baptism or other first religious traditions. We envision the first corny Halloween costume that one day our kids will say “What were you thinking?” We envision the first day of kindergarten, grade school, little league or ballet, their first date, the prom, college, their life long career, their wedding day. We wonder who they would one day marry and try to arrange a few. Our son’s we pray for a wonderful women and our daughter's a wonderful man. But most of all we pray for a wonderful mother to our grandchildren. We never envision, The first cut or scrape, The first band aid, The first fever, The first time they spit up, The first run to the emergency room, We never imagine illness, speech delays, learning disabilities or handicaps, We always envision the “perfect child”, the child next door. We never imagine the heartache and pain and of course never imagine death. Whatever disabilities, illness or handicap, our children are still “perfect”. We, as women, have the strength of a man but we have emotion and finesse, We endure what life brings to us. We find strength to care for our children through whatever life hands us. There are women who have never had children, for whatever reason, who still have that “mother’s intuition” which is the “strength” that we are given and as women through birth of our children or through adoption we take on the title “Mom” and we can conquer the world. Everyday we hope and pray that we’ve made the right choices for ourselves, our family and our friends. We are women, all sizes, shapes and colors. We are Strength. Happy Mother’s day to all of us, Mother’s, with or without children, Women, who Imagine and Envision, Women of Strength. Written by, Charlotte Hagelin 5/13/07 at 3:30am when I couldn’t sleep.]]> http://blog.cure4jack.org/2007/05/happy_belated_mothers_day.html http://blog.cure4jack.org/2007/05/happy_belated_mothers_day.html Mon, 14 May 2007 18:05:05 +0000 From Sandra Hello, I am Sandra from germany. My english is not good and I hope you can understand me. I donated for Jack an I wanted to him the chance for a new live to give. I always thought of Jack and always hoped that he well is. He is now a angel and has his peace. I am glad that I may have contact now to Jack´s family. I hope many people to register and can help other people. The transplantation was a small way for me, but for Jack a very big chance. I´m happy that I could donate for Jack. I would do it again. Love of greetings from erfurt Sandra]]> http://blog.cure4jack.org/2007/05/from_sandra.html http://blog.cure4jack.org/2007/05/from_sandra.html Mon, 07 May 2007 01:08:52 +0000 Bone Marrow Drive From May 7 - May 21, you can register to be a bone marrow donor. The Bone Marrow Registry is having free regsitration and YOU can be like Sandra in Germany and try to save a life. This is the "Thanks Mom Bone Marrow Drive", so give me a Mother's Day gift and register. Not to mention that this year on Mother's day we will not only be celebrating our Mom's but Roy and I will be celebrating our Wedding Anniversary on the 13th and on that same day it will have marked Jack's 365th day after the second transplant, in other words Jack would have been 1 year out of the successful transplant on May 13th. Please, be a donor you could save someone's life, but more importantly, do this for Jack. He had friends who not only have NEMO, but other life threatening illnesses that are still waiting for a chance at life. It's free, so give someone life!!!!!!!!!!!! http://www.marrow.org/ Click on this link to find a place close to your home to register. http://www.marrow.org/HELP/Join_the_Registry/Join_in_Person/Find_A_Drive/index.html

Myspace Text Generator, Myspace Graphics

]]> http://blog.cure4jack.org/2007/05/bone_marrow_drive.html http://blog.cure4jack.org/2007/05/bone_marrow_drive.html Sun, 06 May 2007 17:03:04 +0000 Jack's Donor Charlotte here....... On March 25 of this year, Jack was one year out of his first transplant. Even though the doctors were not using this date clinically, the National Bone Marrow Registry was. In the beginning of March, I inquired about finding out who his donor was and filled out a paper to allow us to give our information out to the donor. Unfortunately Jack passed 2 days after the year aniversary of his first transplant, but we still wanted to know who the donor is and be able to tell them how thankfull we were that not only did they give once but twice and that by giving Jack those cells he was cured from the NEMO deficiency. We had really hoped that one day Jack and would meet his donor and be able to thank them himself, but we now can thank her ourselves. On Friday April 20, (my birthday), Roy got an email from the German Bone Marrow Registry telling us who Jack's donor was and expressing their condolences to us. I have now been in contact with Jack's donor, she is a beautiful young girl, 27 years old and her name is Sandra. She lives in a small town called Erfurt which is located in central Germany. What a wonderful feeling it is to be able to thank her ourselves. We have a little language barrier, but since my mom is from Germany (she came here in 1950) and taught me and my sisters German as well as having taken German in High School, and of course the aid of a translator website, we have been communicating quite well. She is practicing her English with me and I am practicing my German with her and we're doing pretty good. I'm even surprised at how much German I am remembering. She has had many questions and was so saddened by Jack's passing, but she has been going through all the pictures on the website. When she went into the hospital to donate the first time she was only told that it was for a 3 year old boy in America. A few weeks later when the registry contacted her to donate again she said that there was no question that she would, of course do it again. After the second transplant she was able to inquire about Jack and they told her that he was doing well but she still had no idea about who the child was or what he looked like. The regsitry told her she was only allowed to inquire once a year on the status of the recipient and she was just getting ready to inquire again when the German registry informed her of the loss of Jack. She still didn't know who the recipient was until I contacted her. In my first email I thanked her for donating and gave her the website. She emailed me back and said how sad she was but now she has a name and a picture of the boy she gave to in America. Please, consider being a part of the National Bone Marrow Registry and be like Sandra. She said she would do it again to try and save a life. God Bless us all!!!! www.marrow.org Allow me to introduce you to Jack's donor.... Sandra from Erfurt, Germany Sandra%20-%20Jack%27s%20donor-1.JPG

]]> http://blog.cure4jack.org/2007/05/jacks_donor_1.html http://blog.cure4jack.org/2007/05/jacks_donor_1.html Wed, 02 May 2007 17:38:26 +0000 Thursday, April 26, 2007 http://www.marrow.org/ Thank you, again and again and again for always keeping us in your thoughts and prayers.]]> http://blog.cure4jack.org/2007/04/thursday_april_26_2007_1.html http://blog.cure4jack.org/2007/04/thursday_april_26_2007_1.html Thu, 26 Apr 2007 13:43:58 +0000 Ready to Talk About It Yet????? Download file. I would also like to say thank you to each and everyone of you, the support that everyone has shown, has us blown away. Thanks Again Everybody ]]> http://blog.cure4jack.org/2007/04/ready_to_talk_about_it_yet_1.html http://blog.cure4jack.org/2007/04/ready_to_talk_about_it_yet_1.html Jack Wed, 11 Apr 2007 22:20:50 +0000 Wednesday, April 4, 2007 Here I go......Hi everyone, it's me, Charlotte. Its been a while since I last blogged for prayers and I can't thank everyone enough for always remembering in us. Today is the first day that I am alone at home. Roy went back to work today and Christina went back to school on Monday, so here I am home with my mom. We have gotten so many emails and guestbook entries and eventually we will respond but I thought I'd start with a blog to let you know how thankful we are for all of you. You have all shown us increible amounts of support over the last 4 years and especially now. The last 2 days have been a little difficult and I'm sure I'll have a lot of those days. I have so much to do, our living area in my mom's house has been a dumping spot over the last couple of months with Jack being in and out of the hospital, I have med's that need to be thrown out, clothes to put away and toys to be boxed. Everywhere we turn, there is Jack and for the rest of our lives there will always be Jack. As my very good friend said, "Jack has a legacy" which Roy and I are determined to continue to fulfill. Jack gave us all so much. The NEMO diagnosis and the knowledge alone will help more families with this condition and we will remain advocates and support systems to all of our NEMO families. We are a small group who live miles and miles apart but we have a closeness that makes us family. There is so much to do and we will do it. Since having Jack and going through his incredible journey, I have expressed that I have a calling in life and that calling is to help and give my knowledge and gain more knowledge to be able to support and help others. I know I have to go back to work, which I have wanted to do for a long time as long as Jack was better, and now he is better, no more pain, no more suffering, just peace. I'm actually tossing around schooling or something that can make me more beneficial to the cause. We'll see, right now our main focus is on Christina. To all of our NEMO families, Don't be afraid to call us, we are here for you. Any questions you need answered, we are here for you. Jack was cured from NEMO. Jack had a purpose and he endured and did more then any 1 adult may ever do in a lifetime. Jack was the strongest man we have ever known and he will give us the strenth to continue to help all of you, our NEMO families. Thank you all again so much for everything. God Bless]]> http://blog.cure4jack.org/2007/04/wednesday_april_4_2007_1.html http://blog.cure4jack.org/2007/04/wednesday_april_4_2007_1.html Jack Wed, 04 Apr 2007 13:49:36 +0000