http://blog.cure4jackson.org/ en Copyright 2007 Sun, 17 Sep 2006 16:40:57 +0000 http://www.sixapart.com/movabletype/ http://blogs.law.harvard.edu/tech/rss I'm very sorry that I haven't updated in a while. Some of you already know that we've had a rough time over the last few months. Jackson's had a few trips to the hospital, but luckily not long term stays. Right now he is battling a strep infection, but seems to be holding his own. He's a tough kid. Unfortunately, even these small illnesses have taken their toll on him. He's lost a few pounds. I'm afraid that Ally might pass him up in weight pretty soon. He's down to about 36 pounds. You can see from the pictures that we bought their Halloween costumes today. Jackson saw the Elmo costume and just had to have it. When we got home, I wanted them to try on their costumes to make sure that they fit. They both wore their costumes for quite a while and didn't want to take them off. Ally is a fairy princess. Of course, she'll tell you she's a fairytale. Either way...she's adorable. They are both really excited for Halloween. Most of you already know that we had another failed IVF attempt. That makes 6 for us. Steve and I are both pretty disappointed and frustrated. Our doctors told us that we needed to target a transplant for Jackson by age 5. He turns 5 next month. I've been doing some research and have found a clinic in Colorado that I've contacted. They are supposed to have the highest success rates in the US. I've also found what I hope is the answer for improving our chances. It seems that immunological function plays a big factor in IVF success. There are several websites that I've found that talk about reproductive immunology and specific tests that should be considered when you have several failed IVF attempts. I'm going to talk to the clinic in Colorado about having these tests run before the next cycle. I hope and pray that this is the answer for us. Please keep us in your prayers. We need to find a bone marrow donor for Jackson. Also, my Dad had surgery last month. He's been in and out of the hospital, and it's been a slow recovery. Please also keep him in your prayers. http://blog.cure4jackson.org/2006/09/update_for_september.html http://blog.cure4jackson.org/2006/09/update_for_september.html IVF Process Sun, 17 Sep 2006 16:40:57 +0000 The Chosen Mothers by Erma Bombeck Most women become a mother by accident, some by choice and a few by habit. Did you ever wonder how mother's of children with life threatening illnesses are chosen? Somehow, I visualize God hovering over earth selecting His instruments for progagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger....... "Armstrong, Beth, son, patron saint Matthew" Forrest, Marjorie, daughter, patron saint Cecilia" Rutledge, Carrie, twins, partron saint Greard." Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel." "But, does she have patience?" asks the angel, "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy." "But Lord, I don't think she believes in you," said the angel. "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see....ignorance, cruelty, prejudice....and allow her to rise above them." "And what about her patron saint" asks the angel, his pen poised in mid-air. God smiles and says..."A mirror will suffice."]]> http://blog.cure4jackson.org/2006/05/happy_mothers_day.html http://blog.cure4jackson.org/2006/05/happy_mothers_day.html Mon, 15 May 2006 18:58:02 +0000 Happy Easter everyone! I uploaded a few pictures of Jackson and Ally's Easter egg hunt. They had a great time. The Easter Bunny put money in their eggs, so they are looking forward to spending it. When I asked Ally what she was going to buy, she said "Toys R Us". She has a little over $7, so I'm not sure if she can get all of "Toys R Us", but we already have about 1/2 of the store in our living room anyway. They colored eggs yesterday and finger painted, so we had a bit of a mess, but it was worth it. I think that Ally may have misunderstood the idea behind finger painting - put the paint on the paper, not on you. She had a lot of fun! I want to thank the Todd Krampitz Foundation for inviting us to come out and speak about bone marrow donations. Their website is www.ToddKrampitzFoundation.org. I wasn't able to attend, as I had a conference that was already scheduled, so Steve had to go by himself. They made a huge poster of Jackson that they had at their luncheon. We have it in our kitchen right now. It's a picture of Jackson in his Blue's Clue's halloween costume. Steve was a guest speaker at their luncheon that followed their golf tournament. We appreciate the opportunity to speak about Jackson and to discuss the importance of donating bone marrow. Some of you may be aware that our friend Ken Merrick was playing poker for Jackson. He plays in tournaments, and decided that he would donate a portion of his proceeds to help support Jackson. He won the preliminary tournament in Reno, and took 31st place in the final. As a result, he made a significant donation to help us pay for our treatment for Jackson. I was very surprised and touched by his generousity. This will get us well on our way to paying for our next IVF treatment. So many other have provided support to us lately, either by organizing bone marrow drives, donations, getting the word out etc. We are overwhelmed by the support. It would be impossible to mention everyone, but I'd like to mention a few. Soltex Federal Credit Union posted a flyer about Jackson's condition and is taking donations at their branches. I'd like to thank both Soltex FCU and all of the members who have supported our cause. Mira Bryant contacted the Deer Park Chamber of Commerce and they have distributed a flyer with their monthly mailer to all of their members explaining our situation and telling them how they can help. The Hampton Inn in Deer Park has ordered several items to support our fundraising. Tanya Battle is organizing a bone marrow drive at her church (more details to come) and has made buttons with Jackson's picture to bring attention to our cause. She's done so many other things to help us, it would be impossible to name them all. Lisa Adams and David Calvo, in addition to being a sympathetic ear for me, have helped support our fundraising efforts. Tracey Tinnermon, Joe Marzullo, Viola Chapa and Melodie Cook are all Going Green, by wearing their wristbands. My Aunt Dee and her granddaughter, Brittany, have supported our fundraising efforts, and also sent Jackson and Ally an Easter care package. It had toys and candy for the kids as well as adorable letters for both of the kids from Brittany. The kids really loved it! Ally is eating a marshmallow bunny from the package right now. There are so many others who have helped us in our efforts. We are so touched by the number of people who want to help. Thank you to everyone. Finally, I'd like to thank everyone who has added Jackson to their prayer lists and who are individually praying for him. I'd like to ask that you continue to pray for Jackson and to add him to prayer lists. We strongly believe in the power of prayer. I would also like for you to pray for two little boys who have recently undergone bone marrow/stem cell transplants. Both Jack Hagelin and Simon Gutierrez have a NEMO mutation, just like Jackson. Jack is 3 and Simon is 7 months. They are both fighting for their lives right now. Please pray that both of them have engraftment and don't have any serious complications from the transplant. They are tough little guys. Jack's website is www.cure4jack.org and Simon's is www.cure4simon.org. --- Brenda http://blog.cure4jackson.org/2006/04/happy_easter_and_thank_you.html http://blog.cure4jackson.org/2006/04/happy_easter_and_thank_you.html Sun, 16 Apr 2006 10:27:22 +0000 I want to thank someone who did something very special for our family. It was very unexpected, and I don't think that words can express our gratitude. So, the kids and I made a sign to say Thank you. You can view in our pictures. http://blog.cure4jackson.org/2006/03/thank_you_mr_ken.html http://blog.cure4jackson.org/2006/03/thank_you_mr_ken.html Sun, 26 Mar 2006 14:25:54 +0000 We have our wristbands that we are selling to raise money for Jackson's treatment. As I said before, they are green in honor of Ally "The Green One" (See Background Blog Entry). In honor of St. Patricks Day, be sure to wear your Green One. I've added a picture to our file showing Mira Bryant and her family wearing their Green Ones. Mira is the Administrative Assistant at our plant in Deer Park, and has always been very supportive of our family. She's been there since the beginning when Jackson got sick the 1st time, and knows how hard this has been on all of us. I want to take this opportunity to say thank you to her. I know she's cried a few tears on our behalf over the years. If you want your own Green One, you can order them from our store. We also have cure4jackson t-shirts available. I spent the day today attending the funeral of the father of one of our employees. It was a long day (7 hours in the car), but well worth it. The gentleman who passed away had 6 sons. Each of them got up and talked about their Dad. They all said that their Dad was their best friend and they thanked him for teaching them how to be men. They thanked him for teaching them how to be husbands and fathers and church members and community leaders. it really touched me. What is a better measure of the success of a life than to have your children say such beautiful things about you. He has left an incredible legacy. Happy St. Patricks Day everyone. Go Green!! http://blog.cure4jackson.org/2006/03/are_you_wearing_your_green.html http://blog.cure4jackson.org/2006/03/are_you_wearing_your_green.html Wristbands Fri, 17 Mar 2006 17:11:43 +0000 Ally turned 2 on Saturday, March 11th. When we told her that we were going to go to the zoo for her birthday, she got this surprised look on her face and said "There's animals there!" We decorated the house with Dora the Explorer decorations and balloons so that she could see them when she woke up. She was so excited! We also got her a Dora the Explorer doll house. She got out of bed and went straight to the house and started playing. She LOVES Dora. Her Grandma and Grandpa Schneiders joined us for the day. Everyone had to wear Dora party hats. Check our our pictures to see the fun. We were able to add about 400 people to the national registry at the drive put on by Channel 13 on Friday. Many of the people coming in said that they were coming to try to help Jackson. It's very overwhelming to see so many people that don't even know us that want to help. Never doubt that there are a lot of wonderful people in this world! Thanks to Christi Myers. She is the reporter responsible for the story and the drive. She's been a tremdous help to our family. It's obvious that Christi really cares about the people that she is reporting about. See below for the story on the abc13 website. The link is http://abclocal.go.com/ktrk/story?section=health&id=3979442 http://blog.cure4jackson.org/2006/03/ally_turns_2_and_results_from.html http://blog.cure4jackson.org/2006/03/ally_turns_2_and_results_from.html Bone Marrow Registry Mon, 13 Mar 2006 12:10:31 +0000 Watch for Jackson LIVE on KTRK Channel 13 March 10, 2006 during the 11am show. Jackson will be at the KTRK studios to help promote the second annual Channel 13 Blood and Bone Marrow Drive. Due to his immune deficiency Jackson will have to be kept seperated from everyone while he is there, but he is very excited about going to work with Dada !!!! Everyone please watch, and get registered to be a bone marrow donor. You could be someone's hero. Maybe even Jackson's !!!! http://blog.cure4jackson.org/2006/03/jackson_live_on_ktrk.html http://blog.cure4jackson.org/2006/03/jackson_live_on_ktrk.html Thu, 09 Mar 2006 21:34:08 +0000 As you know, Steve is a producer for Channel 13, our local Houston ABC affiliate. Channel 13 is doing a story about Jackson this evening, Thursday, March 9th at 10pm. They are doing a story on Jackson to try to encourage people to join come out for their bone marrow drive tomorrow, Friday, March 10th, 6am to 6pm. They have three major locations: ABC-13 STUDIO / 3310 Bissonnet / 713-666-0713 CENTERPOINT ENERGY / 4300 Bissonnet / 713-945-4219 AND IF YOU LIKE EFFICIENCY, AT THIS SITE YOU CAN SIMPLY LOGON TO www.eblooddrive.org AND MAKE AN APPOINTMENT ONLINE! MD ANDERSON CANCER CENTER / Alkek Hospital, 1515 Holcombe Blvd, 2nd Floor / 713-792-7777 Also, if you have a minute, you might want to check out Jackson's website. It's www.cure4jackson.org http://blog.cure4jackson.org/2006/03/join_the_bone_marrow_registry.html http://blog.cure4jackson.org/2006/03/join_the_bone_marrow_registry.html Bone Marrow Registry Thu, 09 Mar 2006 15:46:04 +0000 We found out today that our 5th IVF cycle wasn't successful. The pregnancy test was negative. We are trying to stay positive and focus on the next cycle. We'll try again, probably in April. We have no choice. Jackson needs us. Thanks to everyone for your thoughts and prayers. Please keep us on your prayer lists. Our fight isn't over. http://blog.cure4jackson.org/2006/02/bad_news_about_our_ivf_cycle.html http://blog.cure4jackson.org/2006/02/bad_news_about_our_ivf_cycle.html IVF Process Mon, 27 Feb 2006 06:14:36 +0000 I got quite a present for my birthday yesterday. You can see our new family member in the pictures. No..it's not what you think. This one has four legs and is furry. Jackson and Ally got a dog yesterday. Her name is Skippy (Jackson named her), and she is a Jack Russell Terrier. She's about 2 1/2 months old. As you can see, Jackson and Ally are in love with her (OK, Steve and like her too). She already loves the kids, she chases them and just loves for them to hold her. As most of you know, Jackson loves dogs. He has quite a collection of stuffed and electronic dogs. We decided that he needed to have a real one. We were going to wait until after his bone marrow transplant. However, no one knows what the future will bring, so we decided not to wait. If you know about Jack Russell Terriers, they can be a bit hyper. My friend, Sandra has one (Hi Einstein!), and he's crazy. So, I can't say that I didn't know what I would be getting. When we saw her yesterday, she was sleeping on a pillow. She slept all the way home. So, I was thinking, maybe she won't be so hyper. The minute we got home, she did about 100 circles around the living room, stopping only to jump straight up in the air. I think that she was just pretending to sleep. Jackson and Ally loved it, of course, and chased her while she ran. What were we thinking! http://blog.cure4jackson.org/2006/02/birthday_present_for_mama.html http://blog.cure4jackson.org/2006/02/birthday_present_for_mama.html Sun, 26 Feb 2006 09:51:46 +0000 Dear Jackson, It‘s Dada. I am writing this to tell you how much I love you. You are only 4 years old right now, so you can’t read this yet, but I know you’ll understand how I feel. I see an incredible love and understanding in you every day. I want you to know you are my everything. You make me laugh and cry, you put a smile on my face when nothing else can, and you make me believe. I believe in you. I wish I could take this all away from you. Take your burden from you, to carry it myself. To make your immune system whole. If there was a way to do that, I would have done it long ago. Your mother and I would do anything to ensure your health and safety. And so we are doing everything that can be done. We are trying to make a miracle. A miracle that will be both your sister and your savior. I want to make you this promise. We will get through this together. Life has been extraordinarily tough for you, and we still face some very dark days ahead. But, together we can always find the light. I promise you this, son: I will never stop fighting for you. I will never stop trying to help you. I will never stop loving you. Love, Dada http://blog.cure4jackson.org/2006/02/letter_to_jackson_from_dada.html http://blog.cure4jackson.org/2006/02/letter_to_jackson_from_dada.html Letter to Jackson Thu, 23 Feb 2006 06:08:57 +0000 had a primary immune deficiency and ED caused my a NEMO mutation. Andy underwent a bone marrow transplant and is doing well (that's why I say had). Their daughter, Sophia, was born the same week as Ally, our daughter, and was a result of IVF and PGD. I feel as though we are walking in their footsteps. Their website is www.andy.org.mx]]> http://blog.cure4jackson.org/2006/02/background_why_do_we_need_a_cu.html http://blog.cure4jackson.org/2006/02/background_why_do_we_need_a_cu.html Background Tue, 21 Feb 2006 06:57:35 +0000 Please sign our guestbook. http://blog.cure4jackson.org/2006/02/guestbook.html http://blog.cure4jackson.org/2006/02/guestbook.html Sun, 12 Feb 2006 09:01:54 +0000