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Click here to go back to the main page. Monday, April 24, 2006 6:20 PM CDT Hello everyone, I just wanted to give you a quick update. We just got back from a quick trip to Duke. Jack had been having headaches over the past several months that were becoming more and more frequent. None of the Doctors here or the Doctors in St. Louis knew what the problem was. Dr. Kurtzberg asked us to get to Duke as fast as we could and we did. A wonderful friend graciously agreed to fly us to Duke in a private plane. What a blessing. We didn't know what we would do if we were on a commercial flight and Jack had one of the attacks. It always involved a severe headache and vomitting. To make a really long story short, the shunt in Jack's brain was clogged on an intermittent basis. It would get clogged, pressure would build up and he would get a headache and throwing up. The Doctor at Duke went in and replaced the old shunt with a new programable shunt. They can actually lessen the amount of draining if Jack gets to where he doesn't need as much draining. They can adjust the setting of the shunt with a very strong magnent. Jack went through the surgery great. They just had to shave off a little bit of hair and used the incision that was made when the original shunt was placed. They don't know why Jack's shunt became clogged. The Doctor said they almost never have problems with them. While we were at Duke, we did all of his annual check ups. We were at Clinic pretty much nonstop except for the day Jack had his surgey. All of the testing went really well. Jack's intelligence tested above where he should be and we were very pleased by that. His biggest issues seem to be with his finger dexterity, coordination and strength. His hips and legs look good but the curvature of his spine hasn't gotten any better and may have gotten slightly worse. If the spine does not start to improve, there is a procedure they can do to straighten it but we would prefer not to do any more surgeries unless absolutely necessary. We are going to work really hard on physical therapies to help Jack with his strength, dexterity and coordination. With prayer and hard work, we think Jack will be able to do anything he sets his mind to do. Sunday, February 19, 2006 9:06 PM CST Hello: Sorry it has been so long since we updated. Overall, things are going very well. Dr. K told us that Jack would catch everything when he started preschool. Boy was she right. Jack loves preschool and it has been great, but he has caught a lot of bugs. We have had lots of throwing up episodes that resulted in three hospitalizations until we figured out a routine to deal with the episodes. When a person gets sick or has an upset stomach, their body produces Cortisol in increased amounts to soothe the stomach. Jack can't do that yet because he was on immune suppressant drugs for so long. Therefore, Jack takes Hydrocortisone to replace the Cortisol he can't produce himself. When he is throwing up, he can't keep the Hydrocortisone down long enough to help soothe his stomach so he keeps throwing up. We have now worked out a system in which a nurse comes to the house when Jack is sick and gives him an injection of Hydrocortisone. Jack hates the shots, but he hasn't had to go to the hospital since we started doing the shots. Jack should start producing the Cortisone in normal levels soon - - at least that is what we are told. Jack is off of all meds except the Hydrocortisone.
Sunday, August 21, 2005 8:38 PM CDT Hello Friends and Family:
Sunday, March 13, 2005 11:25 AM CST Hello Friends and Family:
Friday, January 7, 2005 3:16 PM CST Hello Friends and Family:
Friday, December 3, 2004 4:30 PM CST Hello!! I just wanted to give an update of Jacks visit to Duke this week. David and Jack flew to N.C. monday and came back tuesday. Dr. K had asked to see Jack. She wanted to physically look at him as we wean his meds. After seeing him and his skin, which is still a bit rashy, she has decided to stop the weaning process for at least 2 months. She said he is reacting to the lower doseage of meds and that if we continue, his hair would fall out. After 2 months we will cut the meds in half and see how he does with that for a month or two. We are still looking at 8-9 months before immunizations, which means Jack is still "home bound". He is taking about 12 meds a day, gets an immune booster IV every 4 weeks and has started the Synagis shots to his legs to protect him of RSV this winter. Just to give you an idea of medical cost, each shot, in each leg cost $2400!! He gets these every 28 days as well. Thankfully we have insurance to help with these costs. Jack is getting 10 therapies a week, 3 speech (which he is doing great), 3 physical and 3 occupational therapy, and 1 water therapy. Dr. K said above all things, we need to be very aggressive in his therapy concerning his hands and shoulders. She feels over the next year or two he will develop normally. Right now he is very limited in range of motion with his arms and wrists and fingers. The tendons are very tight which make his gross motor skills lacking. We work with him continually at home. Mentally he is doing awesome. He tested at a 4 year old level and he will be 3 in January!! Jack is such a happy little boy. He is very funny and always has a smile on his face. I will have to tell you that when our parents as teachers represenative was at our house last week, she asked Jack who is friends were, and he named every one of his therapists. awwww. I felt so sad that he doesn't have his own friends yet, but he loves his therapist and works well with them.
Tuesday, November 23, 2004 3:34 PM CST Hello Friends and Family: Tuesday, October 5, 2004 4:16 PM CDT Hello Dear Friends and Family, Sunday, September 12, 2004 9:24 PM CDT Hello everyone: Wednesday, August 25, 2004 9:37 AM CDT Hello: I just wanted to do a brief update. Jack is doing really well. He had his ear tubes put back in last week. This was not a big deal other than having to wait three and a half hours for a fifteen minute procedure. Jack is being weaned off of his medicines. He is off of the Orapred and we are slowly going down on the cyclosporine. We hope he will be off of everything in the next couple of months. Our biggest news is that Jack's big brother, Noah, started Kindergarten this week. Noah loves it. It was a little traumatic on me and Gina but Jack really cried when we dropped off Noah at school. He wanted to go to school too and really misses Noah. Jack is so attached to Noah but he is adjusting to having more one on one time with Gina at home. Jack is enjoying his increased freedom. Last night Noah had soccer practice and Jack got to play on the playground equipment nearby. He had such a good time. He cried when it started to get dark and we had to go home. We are taking him to the park as much as we can. Climbing up and down the slides is really good physical therapy for him. Out of all of the evaluations Jack had at Duke, the primary area that needs work is his balance. We are really going to work on his leg strength as much as we can to help in this area. Climbing up and down slides and other equipment makes his legs stronger and helps his sense of balance. All of the other evaluations indicated that Jack is right where he needs to be. Please continue to pray for Jack. He has bouts of rash as we wean him off of his medicine. We are also working really hard on his orthopedic issues. He continues to amaze us with his progress and his spirit. He is very much the typical two and a half year old - - very strong willed. We will update again as we know more. David
Monday, July 26, 2004 2:07 PM CDT Hello Friends and Family: I just wanted to do a brief update. A couple of weeks ago Jack woke up with 102 temperature. He was groggy and not acting like himself. We called Duke and they told us to take him to the emergency room. They admitted him for the day and did every possible test you could think of including a catheter (ouch, to rule out a bladder infection). They sent us home on antibiotics not really knowing what was wrong. The next day we saw his Pediatrician who started looking very closely in his ears. He dug with some type of tool and then did and ear wash. Out came a chunk of wax along with Jack's ear tube. After this was done, he could clearly see that Jack had an ear infection. Jack is doing great now. We hated to over react but the Doctors were concerned he could have an infection in his infusaport. That was probably the worlds most expensive ear infection.
Wednesday, June 30, 2004 9:51 AM CDT Good Morning!! Jack is 13 months post transplant today! He is doing awesome. This morning the nurse was here at 8:00, physical therapy at 8:15, occupational therapy at 9:15. Busy busy! Jack loves his therapist! Last week Jacks labs came back great. His hemaglobin has been consistantly going down, but last week it went up. We were afraid he was going to need a blood transfusion again, but hopefully he will bounce back on his own. He is physically doing very well. We do have some issues with the carpel tunnel in his hands. It's not so much the carpel tunnel as it is with the muscles in his hands and arms. We work with him everyday on exercises to make him more flexible. His vocabulary is exploding. He talks and sings (in tune), all of the time. He is soooo into Spiderman, Shrek, Blues Clues and Buzz Lightyear. Every morning when he wakes up, the first thing out of his mouth is what he wants to wear. Before we walk out of his room, he is fully dressed for the day in whatever character he wants to be. He is so funny. He makes me laugh so much. Really. We will just be looking at each other and bust out laughing and end up rolling on the floor giggling until we can't laugh anymore. He is so much fun. I adore him so much it hurts.
Sunday, May 30, 2004 11:37 AM CDT It is a big day for us. Today is the one year anniversary of Jack receiving his transfusion of stem cells. This time last year, Jack was receiving a small IV of stem cells from umbilical cord blood. Hard to believe what a difference a year makes. Jack is doing so good. The Chemotherapy he went through made him so weak. His legs were like bird legs when he was discharged from the hospital. He was so wobbly he could barely walk. Today he is running and drop kicking a ball. He is trying to do everything that our 5 year old does. He is still on medication but we are reducing it and his doctor is planning to get him off of everything soon. Once he is off of his meds he can begin getting immunizations and hopefully start preschool. Dr. K is adament that her kids start school on time and do well. Jack seems to be right on track. He is getting physical therapy, speech therapy and occupational therapy several times per week. Friday, May 7, 2004 10:36 AM CDT Hello! Well we have had a good week! Jacks labs came back Weds and everything looks good. Whew. Dr. K at Duke said we could wait until July instead of May to go back for his 1 year check-up. It will be one yearMay 30th since his transplant. Wow. At that time they might, as long as Jack has no unexpected problems, take out his port. I will be so glad when he will be off of all meds. As long as he is on his immune suppressant drugs, he cannot be around other people or kids. Bummer. Just 2 more months, and then we will see how well he does on his own. That will be so exciting. Wednesday, April 28, 2004 9:07 AM CDT Good Morning! We have had alot going on. As you know, Jacks liver enzymes were sky high a couple of weeks ago. They have gone back to almost normal now. Thurs of last week I had to take Jack to St. Louis for his weekly check-up. On the way there (in pouring rain), his Dr. from Duke called and asked for xtra lab work to be done on Jack because his hemaglobin had been going down over the last couple of weeks. We were there for a couple of hours, had his check-up, weight 30lbs now!!, and was waiting for his labs to come back. His blood level had dropped again. Enough for them to order a blood transfusion. He also tested positive for an antibody in his blood. So obviously he had something going on and his red blood cells were working overtime. They were unable to get everything done and find the blood in time, so they said we could admit him or come back on friday. So (still pouring, not raining), I drove back to Springfield thurs. night and drove back friday morning early, again in rain. Jack got his transfusion over about 3 1/2 hours and we came back, in rain. Jack was so so so good. Never cried or whinned either day. Even in the car. Of course i whined, my shoulders up around my ears from driving 14 hours in two days in rain, hee hee. He is such a trooper. Last night the Dr. in St. Louis called and said that one of Jacks labs came back positive for a virus. Hmm..... So right now Jacks nurse is here giving him his IV and his therapist is here. Im on pins and needles waiting for his labs to return today. They said that they may treat this by a daily IV. ???. I will just have to wait and see. After he got his blood transfussion on friday, he has had a bunch of energy. He goes non stop, hopping and skipping and talking. He is so much fun and repeats everything we say. I will put new pictures on today or tomorrow. I can barely find time to update this site. Really, its crazy around here. Right now I have 7 Amish guys hanging a picture above my stairwell. They have been framing around duct work downstairs (new furnace), and I asked them if they could help me. They are amazing. Very nice and hard workers. I know they must think Im a little off, ha ha. Wild woman! Im trying to paint an old wicker couch I found at an antique store, clean house, remember when the 9 therapy sessions are, get Noah to pre-K on time (not likely), be here for the framers, nurse, handiman, and try to make it to work on time. That is just tody and its not even 10:00!!! A typical day.
Thursday, April 8, 2004 10:28 AM CDT Good Morning! It has been a while since I wrote, Im sorry!! Things are a bit busy around here. Jack is doing very well. We did have a major scare last week. His liver enzymes were sky high. He has been vomiting the last couple of weeks, which we now know was a virus and not an infection. Normal enzyme level for his liver is 30-55 and Jacks were 825! Yeah, I freaked out. But, he fought it on his own. We kept a close watch on him and did labs every day and they have been going down. They are not at normal levels yet, but the trend is good, and the vomiting has stopped. Jack is doing very well with speech therapy. He is mimicking everything he hears. The therapist said this is good because his jargon will become words soon. He says alot very clear. Overall, he is doing great. He keeps improving everyday! Monday, March 15, 2004 8:01 AM CST Good Morning! Well we had an excellent report at Duke. Jacks doctors were really excited to see him and how well he is doing. The big excitement is that Jacks vision has improved. Im sooooo amazed at how well he has done. His CAT scan was normal, chest x-ray normal, echocardiogram normal, lab work normal, pulmonary functions normal! We won't get the results on his immune studies and enzyme levels for another couple of weeks. The doctors expect them to be good as they were in December. Dr. Kurtzberg gave us some advice that shocked us but made us very happy! She encouraged us to enroll Jack in pre-school this fall! Yahoo! Can you believe it! That is so exciting. I never really thought about it being a possibility so soon. I can't wait. Jack will love it. They left most of his meds the same. Since he has had a small flare up of graft vs host disease (rash), they are going to wait on weaning him from his meds. They also told us to continue doing what we have been doing as far as visitors and getting out in the public. At least 3 more months. He cannot be around other kids and groups morethan 10. So, his big party in May might be put off for a month or two. We are going to abide by their rules because Jack has done so good this winter in not catching any illnesses. We will continue to go to St. Louis every 4 weeks and Duke every 12 Weeks. The plane ride out was not so fun. Jack did great for about 30 mins and then he wanted out. I don't know if his ears hurt from the pressure or he was just mad, but it got pretty wild for a while. On the return ride, since he hadn't slept well and had so many appointments, we slipped him a bit of Benedryl (hee hee) and he slept like a baby. Noah stayed in Dixon at my parents while we were gone. He always has a great time. We spent this weekend outside playing and riding bikes. Jack loves his tricycle (he can't peddle yet so I have to push him). We also got a chance to plant some rose bushes and do some landscaping. When I get done this place is going to look like a garden nursery! I love flowers! Well enough for now. The physical therapist and speech therapist are here right now. I better go and make sure things are going smoothly. It's lound in the other room and Noah is helping too. We have been trying to teach Noah how to whistle and in the meantime Jack has learned how to scream. He screams all of the time and thinks it is so funny. ha ha. I guess he thinks he is whistling, but I think I need ear plugs.
Monday, March 1, 2004 7:29 AM CST Friday Morning: Just a quick note. It was one year ago today that David and I took Jack to the specialist who told us of Jacks illness. A day where all hope had come crashing down. A day where this Doctor warned us against getting on the internet to read about the disease. A day where this Doctor told us to go home and spend our last days with Jack, for there was no cure for his blindness, his hearing loss, his stunted growth, his mental retardation, his organ shutdown, his life. Well Doctor, just look at him now. Jack IS healed and cured. He can see, hear, growing, and will live a full, long, normal and healthy life! Thank you God. And thank you to everyone for your prayers and concern. This is a day of reflection and celebration. Gina
Monday, February 9, 2004 9:10 AM CST Good Morning! All is well here. Jack continues to do great. We went to Childrens Hospital in St. Louis last week and his check-up went good. He has gained a pound! Yeah! He is at 28 pounds now and he grew a 1/4 of an inch since our last visit last month. He is now 34 inches tall! They think he is ready for a growth spurt. Mom and Dad made it back from Texas and Mexico, so Mom went with me to St. Louis. Jack and I spent the night in Dixon the night before. Jack continues to get physical and speech therapy twice a week and now we have added occupational therapy once a week. He is doing great with all therapys. I am however, starting to see a bit of an attitude and temper with my new two year old. Hmmmm. Noah thinks it is funny. Ha. Ha. Friday, January 23, 2004 10:00 AM CST Good Morning! I know! I am a bit slow on updating this time. These boys (all three) keep me pretty busy. First of all Jack had a great birthday. I will have David put 4 new pictures on here later today. I would, but they always get lost, hee hee. Jack is 2!! I can't believe it. He is doing so well. His labs are great. We are starting to wean him from some meds. yeah! Now the good news. This is a HUGE praise report! As you know, the audiologist at Duke was so sure that Jack needed hearing aids. I wasn't convinced. Jack underwent a procedure at the Cox Hospital here in Springfield this week. It is called an ABR test. They sedate him and hook him up to electrodes and record the brainwave response and nerve endings by sending different levels of frequencies in his ears. Its complicated. But! Prayer is a mighty thing. Jacks hearing is NORMAL. He is fine. No hearing aides. Nothing. Nada. Nilch. Take that Mr. Audiologist who was so POSITIVE that Jack couldn't hear. Hmp! Again, Jack overcomes another hurdle. To say the least, we are thrilled! We celebrated and rejoiced.
Tuesday, January 6, 2004 10:06 PM CST Well its almost midnight here in Springfield and that means that in less than 2 hours, Jack turns 2!!!!!! I'm so excited. Im a little bit of a freak about birthdays. I go overboard. I guess its because my mom always made our birthdays so fun and special. On Noahs first birthday I had a Hawaiian Luah. I wont go on about the other ones, I don't want any eye rolling, tee hee. But, I already have the house decorated in ELMO, of course. And balloons are everywhere. Even though it will just be the four of us and Poppy and G Shuler, I still want Jack to feel special. My parents would be here but they are spending the month down south, something about warmer weather and the beach. Hmph!
Wednesday, December 24, 2003 3:39 PM CST Merry Christmas. We have good news to share and then more good news. As you know, when we went to Duke in early December, Jack had a hearing test and the audiologist was concerned that he had some hearing loss. Jack had his monthly check up on Tuesday in St. Louis. They did another hearing test and the audiologist said if she didn't know his history, she would have no concerns at all. She seemed to be very positive about Jack's hearing. Just to be sure, we are going to have an "ABR" test done. It is a test where they hook up electrodes to Jack's head and send signals to the nerves in the ear. They can get an accurate reading as to whether or not Jack has had any nerve damage. We can have this done in Springfield but it does require him to be sedated. Right now the doctors are thinking that perhaps Jack was just tired or irritated when he had the hearing test at Duke. He had just gone through three hours of physical testing when they did the hearing test. The test in St. Louis was first thing in the morning. It is very hard to get a child as young as Jack to give an accurate response, especially when they are tired. Gina set through the most recent test with Jack and she feels he definately heard the tones and responded. We are feeling pretty upbeat about the hearing tests at this point. Tuesday, December 9, 2003 10:39 AM CST Good morning!! Well we are back from Duke and are glad to be home. It was great going to the airport and getting on that airplane with Jack and being able to bring him home. We had a full week. Jack had a 5 hour developmental exam with many Doctors and therapists. He did very well in all areas except for the hearing exam. He appears to not hear high pitch frequencies. We are to have a more thorough exam under sedation when we go to St. Louis Childrens Hospital later this month. They will take a close look at his brain and middle and inner ear to see where the hearing loss is. If it is associated with his speech, they will recommend hearing aids. If not, then they said to not worry about it. Ok. Me not worry? His walking and talking had improved alot since our last exam. They are very pleased but are still recommending physical therapy 3 times a week, speech therapy at least 2 times a week, and occupational therapy 2 times a week. He tends to walk on the inside of his feet, so we are to get orthotic insertions for his shoes. This means he needs to get a mold of his feet and have a special device made. And as his foot grows we will have to do this all over again. I hope insurance provides for this. YIKES! But, whatever it takes. Good news is his CAT scan, NORMAL!! His echocardiogram, NORMAL!!!! All blood work relating to his kidneys, heart, liver and everything else, NORMAL!!!! YAHOO! His immune studies, donor cell studies, and enzyme level studies will take a couple of weeks. They are hoping that his immune system is 25-50 y now. I hope so. Each day he gets stronger. He was so so SO good while we were there. He is so patient. Dr. K asked that we take him back to 5200 unit so that the nurses and staff could see him. They have had a very tough couple of weeks. It did them alot of good to see how well Jack is doing. He had lots of smiles and "HI" for them. Jack also had surgery on thurs. to have his central line removed and a port put in. Everything went well. It is so comforting to know that Jack is off of all IV's except for his monthly immune booster. He still takes alot of oral meds, but over the next 4-6 months he should be weened from them. We go back to Duke at the end of Feb. We are no longer going to his pediatrician every week, only to St. Louis every 4 weeks for a check-up. They did not want to expose him to the sick kids at Dr. Collin's office. That is fine with me! We still have the nurse come out every week to do lab draws on Jack and to get his vital signs and weight. We have had to pull Noah out of pre-k for the rest of the year. The flu is really bad in Springfield right now, and I can not take that chance. We are even turning family members away right now. Sorry. But just remember, this May, we won't have to worry about it. PARTY at my house!
Sunday, November 30, 2003 8:03 PM CST Hi all!! We had a great Thanksgiving. With an early breakout of the flu we decided that from now on until the end of the flu season we stay home. That means no family get togethers or going to birthday parties, etc. I look at it this way, if Jack can't celebrate Thanksgiving or Christmas at grandma's then no one goes. Next year we will have BIG parties. Our medical staff at Duke told us last week that if Jack caught the flu it could be devastating and would put him in the hospital in St. Louis. I cannot take the risk. On Thursday I cooked a great meal, yes I know, I cooked more than 2 dishes, hee hee. But we had a great time, we played Yahtzee Jr., Bob the Builder memory game, and Hungry Hungry Hippos. Jack and Noah had a great day. I was a tad bit sad that Dallas got clobbered, oh well. We put up lights and our fake tree. We always have a live tree, but Jack has to have an imitation this year. It is pretty and its 9 ft. tall! I need more ornaments!
Wednesday, November 19, 2003 10:20 PM CST Hello!! Gina here. Sorry it has been so long since I have written, but our computer has been down for about 3 weeks. During the move, the DSL people lost our orders to rehook us up and it took them forever. Now I feel connected to the real world again. Thursday, November 6, 2003 8:48 AM CST Good Morning: Sorry we haven't updated but we really don't have any news to report. Jack is continuing to do great. He is into everything. He can make messess faster than we can clean them up. We are working with him a great deal on improving his motor skills. He is much more sure footed than he was just a few weeks ago. He is learning to climb stairs and is getting the hang of kicking a ball. He will continue to improve as he gains strength in his legs. He seems to be getting stronger every day. Jack and Noah chase each other constantly. This is really good for Jack. His coordination is improving and he is close to outright running. I would call his run more of a trott but he is getting there. His labs are all good and he is now taking his Magnesium orally. We are going back to Duke for his six month check up the first week of December. They are planning to take out his central line that week assuming all is still going well. We would like to get the line out because it is a potential source of infection. Furthermore, Jack is just itching to get in the bathtub. He can't get in the water with a central line. We had a fun Haloween. Jack was a clown and Noah was a green skeleton. Jack and I mostly sat in the car while Noah trick-or-treated but we had a good time anyway. Please continue to pray for Jack's continued recovery. We are seeing answers to prayer on almost a daily basis. God Bless - - David Monday, October 27, 2003 3:10 PM CST Hello: Sorry we missed updating last week. We moved into our new house and things have been a little hectic. We are just getting to the point where the boxes are gone and we now know where most of our stuff is. I can't believe how much stuff we got rid of but we still have way too much. The last time Gina and I moved, it was no big deal. Five years and two children later makes a huge difference. The new house is great. We have a lot more room. Jack and Noah really enjoy running around down in the basement. Jack is doing really well. He seems to be learning new words daily and is getting stronger. He still has some congestion which sometimes causes him to gag and throw up. We also think he got a touch of stomach virus on Saturday in that he threw up several times. We have seen no vomit for a couple of days so that is a good thing. We want him to put on some weight. Jack had is first check up with the St. Louis Doctor last Thursday. It went great. They really know what they are doing. They have actually transplanted several children with Jack's condition at the facility in St. Louis. We had no idea that we could have done Jack's transplant so close to home but we are certain that it was best for us to go to Duke. The Doctor in St. Louis said that nobody has the experience of Duke. They referred to Doctor K. as the Queen of Stem Cell Transplant. They confirmed that Doctor K. is esteemed worldwide and that we could not have gone to a better place. It is comforting to know that an experienced transplant team is so close to home if we should have complications. We are so pleased. We did have one little incident. Jack and I were in the play area of the St. Louis waiting room. I picked up a brochure and was looking at it when they called Jack's name. I started to move toward Jack when I noticed what I thought must be a toy piece of poop on the floor. Then I realized it was real! I wondered if a dog had been in the office. Then I looked over and saw that Jack's pants and diaper were around his ankles and he was kind of squatting with a smile on his face. We got some wet wipes and cleaned up as best we could. There was a boy in the waiting room that I would guess to be around 12 years old. He was really getting a chuckle. I guess he saw the entire incident. We gave him a good laugh. Who knows, maybe potty training isn't too far down the road. Tuesday, October 14, 2003 9:19 AM CDT Good Morning! Sorry it has taken me so long to update, but things are a bit crazy around here. We are moving tomorrow morning. Arggggghhhhhhhh! Im trying to pack, keep up with all of Jacks appointments here at the house and Noah and David. I don't even have time to read the newspaper. Let me give you an update from last week. Jack is doing very well. We are able to have our home nurse give Jack his IVIG every other week. This means that we no longer have "clinic day". Yeah! We go to our Pediatrician once a week for weight check and a quick visit of no longer than 10 minutes. That is great. Jack gets magnesium two times a day by IV, and an anti-fungal IV once a day. He still has lots of oral meds, but he takes those really well. He is so happy being home. He goes non stop all day. He is sleeping all night without even making a sound. That is good for me because I am exhausted! Noah loves having Jack to play with again. Jack is so much older now and he can relate to Noah and play right along with him. Just yesterday they were both down on their hands and knees pushing their trains and making train noises. Music to my ears, (until their train whistle gets REALLY loud). I have had a blast with Noah. Last week I went on his field trip with his pre-school to the pumpkin patch. That was alot of fun. David has been cleaning over at the new house everynight until midnight. He wants it really clean before Jack gets there. He is such a hard worker. Me by the way, thought I would be nice and help him get some stuff done, and before I even walked in the house I had stepped on a nail that went through my shoe and stuck in my foot. I had to pull it out! David wasn't really pleased with me. I kind of got the look of "why did you do that". But then he saw my pain and acted like he wanted to carry me in. But the worst of it is I had to go and get a tetanus shot. OUCH! My foot feels great compared to my arm. It feels like it is going to fall off. We have had a crazy week. I think Noah and I are accident prone. We make more messes and problems faster than David can clean them up. hee hee. I did get to get out a bit over the weekend. Rhonda was here for Samanthas sorrority "Mothers Weekend". We made it "Aunts" weekend too. We made pottery and ate dinner and went shopping. Fun, fun! It is great being home so I can see family and friends again and get back to somewhat of a normal life. I think in a couple of months Jack will not need anymore therapy, and he will be off of all IV's. Hey, then maybe I can go back to work! Thanks to the Grandma's for helping out. David and I have eaten out twice, just the 2 of us. Thats a first in 6 months. There is lots of laughter and happiness in this home again. Im so thankful Jack and I are back. Check back every Monday for updates. I think once a week will be enough, now that things are "good". There is lots of craziness and silliness around here, but its all good. Gina Tuesday, October 14, 2003 9:19 AM CDT Good Morning! Sorry it has taken me so long to update, but things are a bit crazy around here. We are moving tomorrow morning. Arggggghhhhhhhh! Im trying to pack, keep up with all of Jacks appointments here at the house and Noah and David. I don't even have time to read the newspaper. Let me give you an update from last week. Jack is doing very well. We are able to have our home nurse give Jack his IVIG every other week. This means that we no longer have "clinic day". Yeah! We go to our Pediatrician once a week for weight check and a quick visit of no longer than 10 minutes. That is great. Jack gets magnesium two times a day by IV, and an anti-fungal IV once a day. He still has lots of oral meds, but he takes those really well. He is so happy being home. He goes non stop all day. He is sleeping all night without even making a sound. That is good for me because I am exhausted! Noah loves having Jack to play with again. Jack is so much older now and he can relate to Noah and play right along with him. Just yesterday they were both down on their hands and knees pushing their trains and making train noises. Music to my ears, (until their train whistle gets REALLY loud). I have had a blast with Noah. Last week I went on his field trip with his pre-school to the pumpkin patch. That was alot of fun. David has been cleaning over at the new house everynight until midnight. He wants it really clean before Jack gets there. He is such a hard worker. Me by the way, thought I would be nice and help him get some stuff done, and before I even walked in the house I had stepped on a nail that went through my shoe and stuck in my foot. I had to pull it out! David wasn't really pleased with me. I kind of got the look of "why did you do that". But then he saw my pain and acted like he wanted to carry me in. But the worst of it is I had to go and get a tetanus shot. OUCH! My foot feels great compared to my arm. It feels like it is going to fall off. We have had a crazy week. I think Noah and I are accident prone. We make more messes and problems faster than David can clean them up. hee hee. I did get to get out a bit over the weekend. Rhonda was here for Samanthas sorrority "Mothers Weekend". We made it "Aunts" weekend too. We made pottery and ate dinner and went shopping. Fun, fun! It is great being home so I can see family and friends again and get back to somewhat of a normal life. I think in a couple of months Jack will not need anymore therapy, and he will be off of all IV's. Hey, then maybe I can go back to work! Thanks to the Grandma's for helping out. David and I have eaten out twice, just the 2 of us. Thats a first in 6 months. There is lots of laughter and happiness in this home again. Im so thankful Jack and I are back. Check back every Monday for updates. I think once a week will be enough, now that things are "good". There is lots of craziness and silliness around here, but its all good. Gina Tuesday, October 7, 2003 2:28 PM CDT Hello: Jack is really doing good. He had his check up with the Pediatrician yesterday and everything is going as it should. I am writing today with very mixed emotions. I am so thankful for Jack's progress but we have heavy hearts because one of our little friends from Duke died yesterday. This little boy had a different disorder from Jack but went through the same transplant process. He was in and out of intensive care while we were there and things never did seem to go well. Gina got to know his family at clinic. They are very fine Christian people from Hawaii. They travelled so far to Duke in hope of saving their baby boy - Noah. Maybe that is what made it so hard for us because we have a Noah also. Everytime someone talked about Baby Noah not doing well, it just ripped our hearts out because we always referred to our Noah as Baby Noah. I can not even begin to relate the pain I know this family is going through. I read his mothers last entry on his web page and it is just heartbreaking. I don't know how the Doctors and Nurses at Duke handle the pain of these losses. They see these children for such long periods of time and they have to become attached. Please pray for this special family and the people at Duke that took care of Baby Noah. I know there are Doctors and Nurses holding back tears today on the PICU ward. Pray for healing for the family. We are very humbly reminded of the blessing we have experienced that Jack is doing so well. David Saturday, October 4, 2003 1:58 PM CDT Hello: It is a gorgeous Fall day here in the Ozarks. Jack has been home one week as of today. I don't really have much to say except Jack is doing great. He is sleeping well and his appetite has really picked up. He seems to be getting stronger as he tries to keep up with Noah. Everytime we pull into the garage, he sees the motorized Jeep and wants to go for a ride. He gets really mad if we don't let him. Jack really, really, really likes to be outside. I guess he wants to make up for all of that time in the hospital and the apartment. We are limiting his outside time because the Cyclosporine makes him very sensitive to the Sun. We are going to try another visit to the Pediatrician on Monday. We tried on Wednesday but we were left sitting in a room for 45 minutes and left. I weighed Jack and wrote it down on a paper towell for the doctor and we left. Every room around us had sick kids in it and we just couldn'take it. Jack's immune system is still weak and we just kept thinking about what we were exposing him to. This time we are going to wait in the car. We are going to have the nurse call us when the Doctor is ready to walk in the room. We love Dr. Collins, he is a wonderful Pediatrician. They just really aren't set up for immune deficient kids. We will get it worked out. The home health people here seem to be very good so far. We are getting into a routine. Thank you to all of the people who have brought food to the house. You are wonderful. We will update later when we have more news. David Tuesday, September 30, 2003 4:23 PM CDT I thought I would do a brief update for Gina. She has had a very busy day. First I want to say thanks to our friends who have brought food to the house. We are eating like kings - - what a blessing. We got some good news, they will be able to do the IVIG at our home. This will minimize the trips we will have to make to St. Louis. The home nurse came by today and stayed for over two hours. The IV pumps they use here are different from the ones we used most of the time in North Carolina - so they had to retrain Gina. In North Carolina we used a pump called a BARD. You just slip a syringe into the pump, hook it up to Jack's line and hit a button - easy. If you remember, we talked about what a pain it was when we had to give Jack the liquid nutrition because the pumps were difficult to use. Well that is the type of pump they use here. I don't know why they don't use the more simple system but that is the way it is. I am sure we will get used to doing it again. The doctors think they will remove Jack from all IVs when he goes back for his checkup in November so we shouldn't have to deal with it for long. Monday, September 29, 2003 8:20 AM CDT Good morning: There is a lot of activity at the house this morning. Jack and Noah are both up and playing "bouncy ball" We had such a great trip home. The plane was awesome. We could get used to flying like that. We hit quite a bit of turbulance. We raised our hands like we were on a roller coaster and Jack thought it was hilarious. Jack and I threw a ball back and forth during most of the trip. Gina started crying when we touched down. It was good to see tears of joy. It was so nice to see our friends and family waiting to welcome us at the airport. Thank you so much for welcoming us home. I let Gina drive us home. She hadn't driven her car for over five months. Driving home was a strange experience for her. She said she felt like a tourist. She had an urge to go see all of the Branson shows that are advertised on the billboards on I-44 and Highway 65. She couldn't get over how wide open everything seemed and the very blue and big sky. Gina and Jack both walked into the house and just started exploring. It was like they were in a totally new place. We think Jack recognized home. He just kept going from room to room going oooh and wow. I am sure our house seemed big after being in the hospital and our little apartment in Durham. I can't really express what it is like to have Gina and Jack home. It is great. Jack is doing so good except that his congestion seems to be a little worse. We are watching it very close. The home health nurse came over Saturday night. He basically just observed Gina doing everthing and went over the Doctors orders with her to make sure we are all on the same page. He was pretty impressed with Gina's technique. He said she was doing everything perfectly. I don't think he realized that Jack is on almost no medication compared to how we started out. We have his first Springfield Doctor appointment set up and we are arranging the physical therapy and speech therapy. The nurse is still trying to figure something out so we can do the IVIG here instead of in St. Louis. That would save us some trips. IVIG was the only medication he was not familiar with. We will write more later. We are trying to get settled. Sam and Becky should arrive later today in Springfield with our Explorer. It is packed to the top. Thanks Sam and Becky. I also wanted to say a special thank you to Jack Reynolds for flying us home. I can't express how much we appreciated not having to take Jack through airports and making him sit on a crowded airplane. What an awesome trip home. David Friday, September 26, 2003 9:04 AM CDT Good morning! Things are well in Durham, this should be our last update from here, yeah! There is one slight change on our plans for tomorrow. I wasn't counting on the time difference, my bad, but we will arrive in Springfield at 12:00 instead of 1:00. As you know, we left Springfield on Easter Sunday and the plane we are flying on belongs to Assemblies of God. So I guess you could say we are flying on Gods airplane tomorrow. How cool. Well thats all from me, David wants to put in his thoughts. I will see you tomorrow! I can't wait! Gina Wednesday, September 24, 2003 7:31 AM CDT GOOD MORNING! Guess what!? Jack got released yesterday and its final, we are coming home Saturday! Somebody pinch me! Again, I called David and all I could do was cry. I was so happy and couldn't believe we were actually coming home. It was a long day yesterday. We arrived at clinic at 9:30 and didn't leave until after 6:00. Thank goodness we are finished with that. But we finally saw Dr. K and Sue and we went over alot of stuff. I was a bit worried, because Jacks rash has come back and I didn't want her to say we had to stay until it was gone. We are just going to try different cremes and Jack will go home on a special IV once a day to treat it. He will still get Magnesium IV once a day and about 5 different oral meds. Not bad. The IVs will stop in a month or two. We will still have to take all precautions at home. Dr. K said to keep visitors to a strict minimum and anyone that feels like they are getting sick, sniffles, or has been around anyone that was sick, cannot come near Jack. No kids. No babies. And especially anyone who has had immunizations within 30 days. Jack cannot go out in public but he can go outside without a mask on. We will probably go for alot of walks early morning or evening. He cannot be in the sun due to his sensitivity of the sun. We apologize and do not want to affend anyone but please understand that if Jack caught any type of illness it would be devasting to him. I just can't risk it after everything we have been through. Jack is 4 months post-transplant and Dr. K said that after 7-9 months we can ease up on the restrictions because his immune system will be much stronger. So give us a few months and we will have Jacks "coming out" party!
Sunday, September 21, 2003 9:04 AM CDT Good Morning. Everything is going good here. Jack and I are just counting down the days. We only have clinic on tuesday to get his normal IVIG meds and hopefully will get released from Dr. K. We are planning on flying home Saturday. Jack Reynolds, a good friend, will be flying us home on a BE20, a King Air. Jack is a retired controller and now flys for Paul Mueller Co. and Assemblies of God. We should arrive in Springfield around 1:00 on Sat. afternoon. I can't believe it. It makes me nervous to think about it really. I just hope everything works out. Sam and Becky are going to fly down with Jack Reynolds and we will meet them at the airport and they will drive our Explorer back to Springfield. Anyone who wants to meet us at the General Aviation ramp in Springfield is welcome. We only ask that we have limited visitors in our home until we get settled. I just can't wait to see everyone and finally get home. I want to sleep in my own bed, so does Jack, hee hee. Yesterday marked 5 months for us here. 5 MONTHS! Whew. Thats long enough. David will fly here on Thursday to help with the final preparations. Im so excited. I have alot to do. If you want to see a picture of Jack in the hospital with the NASCAR pit crews go to www.pitcrewsforkids.com and at the bottom of the page click on photo album and there are 2 pics of Jack. Click on them to enlarge. Well thats all for now. I will write again on Tuesday to let everyone know if we get a thumbs up on going home! Have a good day! Gina and Jack Friday, September 19, 2003 10:35 AM CDT Hello! Well we survived Isabel. We have been without electricity for 18 hours and just got it back. Yeah! It went out about 5:00 pm yesterday and came on at 11:00 this morning. Talk about appreciating electric. Jack and I didn't know what to do, we just sat around staring at each other. We did have fun though. We lit our candles, 7 in all, vanilla, and boy did our aptartment smell good. We read and played by candlelight and went to bed at 8:00 pm from boredom. hee hee. It did get a bit scary at times. Im use to a storm blowing and then moving on, but this hurricane was something else. It doesn't just blow off and on, I mean the wind blew HARD, 40-50 mph for 12 hours! I was just waiting for a tree to come flying through our window. It rained hard all day too. This morning I had to drop Jacks labs off and my Explorer was covered with debris, limbs, braches, leaves and someones mail. There were trees down everywhere. I guess we are really lucky nothing else happened. Of course we had to drive around and check everything out. McDonalds was opened, mmmmm. Well thank goodness we can watch Sesame Street now. Thats after I clean out the refrigerator. Poor Jack, his popsicles melted. And we ate all of his Doritos. I had better call in some favors with some people I know. Jack is feeling great and has recovered from his surgery well. I have to remove his bandages today. I better get my smelling salts. The last time I removed my own bandage I passed out in the bathroom. Gosh, good times. Well I better go and figure out what we are doing for lunch, the native is getting hungry. Just one week from tomorrow! Yippee! love gina and jack Wednesday, September 17, 2003 8:56 AM CDT HELLO!!!!!!!! This is an awesome day! First the best news and then the good news. Remember the whole reason we are here is because Jack was missing an important enzyme to let him live a long normal life. Well, yesterday we got his enzyme study back and Jack has the enzyme level of a normal person. Thank you GOD! I didn't realize what the Doctors were saying yesterday. They handed me the paper with the result on it and I was like, great that is good. But they didnt see the enthusiasm in me. I thought it was normal level for post-transplant but they quickly corrected me and said that Jack was way beyond that, he is NORMAL! NORMAL! I just started crying, ok, bawling. I know I scared my family to death when I called themm because when they answered, I couln't talk for crying, and they thought something bad had happened. Sorry! What an amazing advancement stem cells are becoming. I just can't imagine that just 6 months ago the doctor told us to take Jack home and watch him go blind, deaf, and live 3-5 years and now he is healed, cured and will live a full long life. I just thank God for answering our prayers and giving us the strength to go through this. Now for the good news, Jacks surgery went just fine. It was delayed until 2:00 but he was so good. He hadn't eaten or drank since 9:00 the night before. His surgery lasted about 2 hours while they repaired his hernias, pushed the shunt back into place and took out one of his central lines in his chest. After surgery we had to go to clinic and get an antibiotic IV. We finally got home around 7:30 last night. Jack is a little sore but is feeling much like his old self. David and Noah made it home last night around 11:00. They had to leave for the airport while Jack was still in surgery. That was hard to see them go at that time but all is good. We are still on schedule to be discharged next Tuesday. I can't believe it. I better start packing! But first as if Jack and I haven't been through enough already, we have to deal with Isabelle. We have lots of bottled water, flashlights, candles and doritos and beanie weanies for Jack, tee hee. I sure we can weather this storm. This is going to be the first weekend Jack and I have spent by ourselves. We will keep busy by PACKING! Have a greaat day! Gina and Jack Tuesday, September 16, 2003 9:19 AM CDT Good morning. This is going to be quick. AOL has been acting funny so I haven't been able to update the last 2 days. Anyway we are ready to leave for the hospital. Jacks surgery is scheduled for 12:30 today and we have to be there by 11:00. Please pray that all goes well. Yesterday was Jacks clinic day and all of his labs reports came back good. Jack is doing great and he is feeling awesome. David and Noah were suppossed to leave yesterday but there flight was cancelled, so they will leave this afternoon. They will have to take a shuttle to the airport since I will need to be with Jack. His surgery will take about 2 hours and then we have to hang around for a couple more to makes sure he is ok, and THEN, we have to go to clinic for an anti-biotic IV. This should be a fun day. I have lots of doritos and books packed. Jack hasn't been able to eat since last night so he is going to be hungry. He did eat 3 popsicles for breakfast, because the only thing he can have until 9:00 is liquids. I have to go but will update either tonight or in the morning on Jacks surgery. Noah wants to type a quick message. Gina Saturday, September 13, 2003 9:22 AM CDT Good Morning from N.C. All seems to be well here. Noah and I arrived yesterday afternoon. Jack looks great and seems to be feeling good. He had a very low grade fever this morning which concerns us a little. We hope it is just the earlier virus lingering on and that he hasn't caught something else. We have had so many bugs in our family that we hope Jack hasn't caught anything. Noah and I have gotten over whatever we had but now Gina says her head hurts. She went to the doctor yesterday afternoon and got some antibiotics and a bag full of other pills. The doctor said a bunch of different things are going around. In the meantime Gina is wearing a mask whenever she is close to Jack. We got good news yesterday - - Jack's CAT scan came back normal. So far all of his post transplant tests have come back really good. He has changed a lot in the past couple of weeks since I have been here. His walking is substantially better. He is now squatting down to pick up objects off of the floor and getting up doesn't seem to be much of an effort for him. He is getting stronger. He is learning new words and jabbering constantly. Last night Gina went to pick up a pizza and while she was there she got Noah and Jack each a rubber "bouncey ball". Later that evening Jack and Noah got in a bit of a tussel over the balls. Jack was pulling on Noah and screaming and Noah started crying. We had to break them up. For an instant things seemed so normal. Jack has a very strong personality and has gotten very used to having things his way. In a weird way, it felt good to see them fussing. Jack is doing really well. Please pray that he will fully kick this virus so we can go home soon. His hernia surgery is scheduled for Tuesday morning. The doctors tell us it is not a big deal - - but again we would appreciate your prayers. Jack just filled his diaper. I am delaying getting off of the computer so Gina will change it. I better go - Jack just closed himself in the bathroom and is screaming to get out - - David Thursday, September 11, 2003 8:51 AM CDT Good Morning! I have alot of stuff to talk about today! Good news. Yesterday Jack had his eye exam and his results are wonderful. Most Hurlers kids need to get corrective eye wear but Jacks vision and corneal clouding has improved. Just another miracle and the power of prayer! I can't believe it. Hopefully he will continue to keep his good eyesight. I knew it was good because he loves books and doesn't miss a thing. Also yesterday we went back to clinic for our pre-op screening again. Jacks surgery for his hernia repair, and to take out a line from his chest and to push the shunt back into his stomach is scheduled for first thing tuesday morning. This morning we had a CAT scan done on his brain. They did not have to sedate him for this. I wasn't for sure if he would lay still long enough for this, but he did. We will get the results later today. When we got back to the aptartment this morning the phone repair man was leaving and finally got our line fixed. We had a dead phone all day yesterday. We are just gonna kick back today and take it easy. Our big job today is to work on color recognition. He already knows his numbers. I continuously work with him. He is not behind in anything. Im afraid that when we get home he might be a little bit spoiled with all of the attention he gets from me. He is like a sponge so I am taking advantage of our time. David and Noah were to arrive here today but changed their tickets until tomorrow. It has been 4 weeks since I have seen Noah. I can't wait. I talk to him at least 2 times a day, but I just can't wait to see his big brown eyes and curly hair. I have alot of fun stuff planned for him and the weather should be great! I also wanted to thank Erin, Jeff and Mia for coming by Sunday to see us. It was great having them here and Mia is the cutest little girl ever. I had dinner ready for them and we sat outside at the picnic tables and had a great visit. Mom stayed in the apt. with Jack. Also, thank you from the Shuler gang back in Springfield for all of the wonderful presents you sent. I just wish you could have seen Jacks face. He was so excited. He LOVES books and the tractor book with the wheels was a huge hit, and also the book that is about as big as he is. He just squeeled with delight. I think in all there were 3 video tapes (Clifford and Sesame Street) his favorites and 5 classic board books. He loves Goodnight Moon. Also thankyou for my gift. I also want to thank my co-workers at the control tower in Springfield. You guys are the BEST! I love the pictures you sent Connie. You will never know how that lifted my spirits. Thank you everyone for the savings bond for Jack. I am so grateful for all of our friends and family. I appreciate all of the cards, letters and phone calls. They kept me going. Just 2 more weeks! WOW!...........WOW! Gina Tuesday, September 9, 2003 7:34 PM CDT Hello! It's Tuesday evening and all is well. I actually dropped Mom off at the airport today without crying. It was a happy farewell because I will be seeing her in 2 weeks and a few days. We got in and out of clinic today in record time. Just about 5 hours. After they gave Jack his IV they put us in a little waiting room as usual, but this time we really needed to get out of there by 2:30. Dr. K and Sue came in and said that all of his labs looked really good (blood chemistries and levels). Everything is on schedule to be discharged Tues. Sept 23, thats 2 weeks. I'm thrilled. Tomorrow we have his eye exam. Im sure everything will be good because he had a good exam pre-transplant. It's very common for post-Hurler's to get eye glasses. Then we have pre-op screening, again, and thats all for tomorrow. We do have a busy week though with appointments. Thats ok, it will go by more quickly. Jacks echocardiogram came back good (didn't I already say that yesterday). See my memory is GONE. But, the good news is that his enzyme levels came back today. They do this test 50 days and 100 days post-transplant. Jack is STILL and will forever be 100% donor cells. YAHOOOOOOOO! No trace of Jacks original cells were detectable. Isn't that amazing?! I told Dr. K today that Jack is feeling better than ever. He is so full of energy and life. He giggles and smiles ALL of the time. Im serious when I say this. Just ask Mom. She had the best time with him. He fell asleep on the way to the airport and when we got home I carried him in still asleep. When he woke up he walked into Moms bedroom and was going to sneek up on her. He kept saying "memaw, memaw". Awe. Anyway, it was awesome having her here with me. We had a great time and laughed and talked about everyone and everything. David just called me and said that our house is about 1-2 weeks from being finished. I can't believe it because they had just framed it when I left. We will wait until Jack and I come home to move so we can do it as a family. Besides, I need a little more stress, right? Who knows we may just want to stay where we are. Now that Jack is going to live a full healthy life with me and David and Noah, I couldn't ask for anything else. Thanks for all of the cards and phone calls, they kept me going these last couple of weeks. Gina Sunday, September 7, 2003 3:36 PM CDT Yeah!!!!!!!!!! DAY 100 !!!! I can't believe it. I thought today would never get here. This is the number of days post-transplant, the big day they want Jack to reach without any major setbacks. We have actually been here since April 20, that is 141 days to be exact (and 5 hours 40 minutes) ha. What a relief. Jack is feeling great today. Memaw has had such a great time with him. He wants to sit on her lap and read Little Miss Spider all of the time. Sometime today Davids niece Erin, her husband Jeff and their 2 month old baby Mia will be driving thru for a visit. I can't wait to see them and their new baby. Erin is in medical school and on break right now. Im going to fix them dinner and we will have a picnic. They cannot bring Mia in to see Jack. They will have to take turns going in the apt. because Mia just got her 2 month immunizations. Jack cannot be exposed to anyone within 30 days of their shots. Thats about it, tomorrow we have physical therapy at 10 and speech therapy at 11. Mom leaves tues and David and Noah arrive thurs (9/11). Please continue praying for a fast and healthy 3 weeks to go by. Gina
Saturday, September 6, 2003 11:19 AM CDT Guess what?!!! Today is day +99!!!! I can't believe tomorrow is the BIG day, and boy are we going to celebrate. Its great that my mom is here because tomorrow is Grandparents Day and what a day that will be. Jack is feeling better than I have ever seen. Even before his transplant he never felt that good because of the high pressure in his head and his 31, yes 31 ear infecions. He talks and babbles non-stop and laughs and giggles at everything (especially at grandma). Physical therapy went good until he got hungry and wanted 3 popsicles. We had a great day yesterday and just played. The nurse called and said that his echocardiogram results were very good. He has a small hole in his heart but it will close over time. Noah had one too and now its gone. His surgery for his hernia repair (which is almost gone) is scheduled for Tues Sept 16th. His shunt that runs from his brain to his stomach has dropped down into his scrotum (where his hernia is) and so they will "gently" push it back into his stomach. They said that this is very common and not a big deal. Next week he has immune studies, eye exam and CAT scan of the brain and well of course clinic day on tues. Other than that, the surgery, THATS IT! 3 weeks baby! Where outta here! Bye Bye, ciao, hosta-la-vista, adios! Well I better go, mom has given me the afternoon to do whatever I want. Since its like 65 degrees here today I don't think I will be going to the pool. Have a great day! Thursday, September 4, 2003 8:11 PM CDT Hello! Well Mom made it here today. Yeah! I have her wearing a mask too, just to be safe. Mom had a cold last week but until I evaluate her situation, I have her covered. hee hee. Jack is doing very well today. Yesterday we did just like I said. We had physical therapy here and thats about all we did for the day. If it wasn't for her coming here we probably would have stayed in our pj's all day. (Don't tell David!) Today the speech therapist came and she was totally impressed with Jack. He talked to her from the second she walked in until the time she left. She said that he will have no problem catching up if any. He says many words and is even putting two words together. Thats pretty good for a 19 month old, right? He is very bright. Any kind of puzzle or toy that she gave him, he worked it correctly usually the first time. Even some 2 year old level stuff. Yippeee! Noah is extremely bright so I know that Jack will be too. The only thing wrong with Jack is that he has a little bit of hair growth. And Im not talking just on his head. Its popping up all over. Oh but he is sooo adorable that I squeeze on him so much that it makes him mad. I can't help it, he has this huge grin on his chubby little face that makes my heart go pitter-patter. Today he has felt better than ever. He has laughed and played and has eaten so much. I think he knows that it is getting close to going home. We have a very special person offering to fly us home on a private company airplane. I will tell you more after we get the plans finalized. It is just awesome how God is making everything work out for us. I appreciate everything and everyone who has helped us make this journey a little bit easier for us. Well, tomorrow is going to be a great day. We have only physical therapy at 10:00 and then back to our pj's. No just kidding. Moms here remember. I might even get out tomorrow. Is it bad that I can go to a movie by myself and not feel weird about it. Last week when David was here I went to see Charlies Angels. Sam called my cell phone during the movie and he said he would call me back, and I said "it's ok, i'm the only one in here!" Ha Ha! I don't care. It's my only 2 hours I get that I can completly forget about my situation and think of something as silly as Charlies Angels. Maybe I'll try Jeepers Creepers tomorrow. Just kidding! I better go unhook Jack from his IV's and put Mom to bed. We just talked to Dad and I thanked him for letting Mom stay with me for a week. He said that she has alot of fence to fix when she gets home, tee hee. He was taking care of a new baby calf and the horses. Exactly what he loves doing. I will update again on Saturday unless something really crazy happens like my lights going out again. NOOOOOOOOOOOO! gina Wednesday, September 3, 2003 7:40 AM CDT Hello!!!! Yesterday was a long day but a good day. We started out at 9:00 am and went home at 7:00 pm. Jack had an echocardiogram and he was so good. They couldn't believe that he would just lay still for 15 minutes without sedation. I told them that after everything he has been through, he will do anything. Then we went for a pulmonary function test. This is a test where they make him cry and they measure how deep of a breath he takes. (not a problem). His lung capacity is very good. Then we went to clinic. Jack was sooooo good all day. We had to wait for almost 4 hours to see the doctor after he got his 2 hour IV and dressing change. Jack giggled at me all day because Im still wearing a mask. The doctor said that Jack is doing well. They are going to schedule his hernia surgery in 2 weeks. They just want to make sure he is over his virus. Then she wants him to stay around another week to make sure he recovers well. Sooooooo.... on Sept. 23 we should be released. Hopefully we will come home on that weekend. YIPEE! My spirits are high now. Thats 3 weeks! I better start packing. They kept most of his meds the same for one more week. More good news is that she wants Noah to stay in pre-school. She said he needs to maintain a normal life because it is going to be hectic and crazy when we come home. If he gets sick, he goes to grandma's. We have to wash his hands and face and change his clothes before he leaves pre-school. I can do that (with the help of Tammy), hee hee. Tammy Im going to need you more than ever when we get home, I know Jack can't wait to see you too. Lets see, what else. We will have to go to St. Louis at least every 4 weeks so Jack can get a special immunesuppressant IV. Our weekly clinic day will be in Springfield. I don't know all of the details yet on how that is supposed to go. But at least we are COMING HOME! Jack is still in isolation at the clinic. Thats ok, because it keeps us away from the general population. Monday, September 1, 2003 10:38 AM CDT Good Morning. We just took David to the airport. I know he is anxious to see Noah. Again it is always emotional to take someone to the airport. But the good news is, Jack is doing better. He is eating good and drinking good and keeping everything down including his meds. I, however, am wearing a face mask. I think I caught Davids cold. I didn't feel well when I went to bed last night. Whenever I feel a sneeze coming on, I run out of the room at lightning speed. I laughed at David when he did that, now its not so funny. Im inhaling vitamin C and taking Zicam every 4 hours hoping to cut this cold short. I just don't want to pass anything on to Jack. Today we don't have any appointments or clinic. We are going to take lots of naps and just relax. I have been feeling a little overwhelmed lately and my mom is coming to my rescue. She is flying in on Thursday and staying until Tuesday. Im so excited. She will be a big help. We have alot going on this week and next week with Jack. He has his immune studies, CAT scan, echocardiograms, pulmonary studies, eye exam and well the list goes on. Im just glad that my mom is going to be here with me. Im not for sure but his surgery will be next mon or tues. If all goes well and no more setbacks, we should be home in 3 weeks. Saturday, August 30, 2003 4:47 PM CDT Hello: Things started off nice this morning. Jack ate a very big breakfast which was very encouraging. We then tried to give him his oral meds and he of course gagged and threw everything up. We had to change him from top to bottom as well as the bedding he was sitting on. He hates taking the Cyclosporine. It tastes like fish oil. We are going to start giving the meds before he eats. A little later we attempted again and he took all of his medicine. He ate some more breakfast but not as much as the first go around. We went to the clinic and recieved the good news that his lungs sound clear and he is gaining weight again. It seems like things are going in the right direction. I don't know how Gina does this every day. We have done nothing but wash clothes and tend to Jack. I woke up Friday morning with a cold so I am wearing a mask 24 hours a day and washing my hands constantly with alcohol foam. I asked the nurse practitioner if I should get back on the plane and go home or if I was taking sufficient precautions. She felt like it was o.k. for me to stay. Jack seems very happy and active. Gina on the other hand is showing signs of wearing thin. Please continue to pray for Jack's recovery and that we can get out of this place soon. Also please pray for Gina. She is such a positive person but at times she just loses it. She is working so hard. She also is missing Noah and our family and friends. I also think we are realizing that getting to go home is not the end of this whole process. Jack is going to need therapies and we are going to have to take all of the cleanliness precautions for at least one year post transplant. Gina will also have a four-year-old and me to take care of. Our primary Doctor will be in St. Louis so if anything pops up, we will have to hit the highway. We have been so blessed, but there is still a long way to go. Thank you all so much for your prayers and your support. There is no way we could do this without God's blessing and the help of friends and family. David Friday, August 29, 2003 8:23 AM CDT Good morning! Yeah David is here! Jack saw David standing on the curb and started yelling Hi before he even got in. He was sooo excited and was grinning ear to ear. We ordered pizza and stayed in last night. Today we do not have to go to clinic, YEAH! But, Im changing the way we do things. Jack gets an immunesuppressant drug called cyclosporen and it looks and tastes like fish oil. Everytime I try to give it to him he crys and throws a fit and then throws up. I am going to ask them to put him back on the IV for it. He should be finished taking it by the time we go home, so giving another IV is no problem. It also makes him not want to take all of his other oral meds. It is a huge ordeal and it upsets Jack and me. His weight stayed the same yesterday. The doctors assistant told us yesterday that we have to pull Noah from pre-school. He just started and loves it. He goes 4 mornings a week. This is going to upset him but they said it would be devastating to Jack if he got rotovirus, the flu or any other virus going around. What he has now is common and treatable. They also said that his immune system for the first year is less than that of a new born baby. He cannot be around any children, anyone who is coughing, sick or just had any immunizations in the last 30 days. This with all of his therapys every week and "home schooling" Noah is going to make the first couple of months really hard. But we will adjust, I don't care just as long as we are home. Thursday, August 28, 2003 8:20 AM CDT Good morning. I am so excited that David is coming today. Noah has a cold, so he will be staying in Dixon for a couple of days to attend a fair and parade and then he will go to Springfield with Uncle Sam on Sat. who will take him to Grandma Shulers. David stayed in Dixon last night and is driving to St. Louis to catch a Southwest Airlines flight. I think he gets here about 6:00 pm tonight. Wednesday, August 27, 2003 8:10 AM CDT Good morning! Jack and I had a very busy day yesterday. I asked David to update because I didn't have the time. We started at 6:00 am yesterday and didn't finish until 10:00 last night. Whew. As you know Jack saw many specialist yesterday. They said his motor skills, social skills and comprehension are very good. Mentally he is doing awesome! We just have to work with fine tuning his walking and other things, but that will come with the cutback of the steroids. We went to clinic and got his normal tuesday IV of immunesuppressant drugs and anti-fungal. His weight was down again by 3 ounces. That is probably because he threw up on me and all over himself and the stoller as soon as we got there. I am so glad Mama told me to take a change of clothes. I really wanted to just sit down and cry when that happened. I was tired and we had a long evening ahead of us still. I cleaned Jack up and they started his IV's. The Dr. was concerned that the drainage from his nose was turning yellow, so they started him on an antibiotic IV. She said this is a bacterial infection from the respiratory infection. She said it is common to get. So that is going to be yet another IV I will give him at home. They are not going to schedule his hernia surgery for another couple of weeks. They want him over this infection. The bad news is is will be another month at least before we come home. (sigh) Im trying to stay positive and upbeat. By the time I got Jack fed and bathed and given him his meds and hooked up to his IV's and washed the stroller and ate my dinner, it was 11:00. Jack and I both slept very well. Today we have to go back to clinic for a weight check. If he isn't gaining they will give him another 4 hours of fluids. Then we rush home to meet the physical therapist. Jack is so use to this. He was so good yesterday. Its like he knows to be patient and just go with the flow. He amazes me. Tuesday, August 26, 2003 11:10 AM CDT Good Morning: Gina asked me to do an update in that she and Jack are wiped out. He had a four hour evaluation session this morning. He saw Speech Therapy, Physical Therapy, a Child Psycologist, a Social Worker, a Hearing specialist and had a complete physical. To sum it all up, Jack is doing well for what he has been through. The biggest issue for him will likely be speech therapy and physical therapy. They want him to have both therapies two to three times per week in our house after he comes home. The therapist said he would possibly have less range of motion than a child who has never gone through all of this but that it wouldn't be a big deal so long as we really work with him to build back up after he gets off of steroids. He should be able to participate in sports and all activities that a "normal" child would do. Jack's speech development seems to be about where it was when we entered this process. This of course puts him behind because this all began about four months ago. The speech therapist said that the kids usually catch up as long as they get the speech therapy they need. Jack was really put through the wringer this morning. Gina said they were pushing him to run, had him climbing steps, rolling around on a ball and all kinds of things for four hours. He was passed out in his car seat when she called me. We are going to have a lot of work ahead of us. Jack's outcome will be directly linked to how hard we work with him and of course the continued blessings of God. I can't help but think of the original prognosis we received from the Doctor in Columbia - - a slow process of blindness, deafness, physical deformity followed by a slow death from infection. We can't lose focus of how God has provided for Jack. The "team" is meeting to come up with a therapy plan for us to take home with us when we leave. We will have to find local providers for the therapy Jack needs. Monday, August 25, 2003 7:32 AM CDT Good morning! This is Aunt Rhonda. Jack is doing better! He is still going to clinic everyday for fluids since he is still not eating or drinking too much. They still haven't scheduled surgery but we think it will be next week. Today is day 87! He will start having his tests to begin preparation for returning home. Hopefully, he will be home in 4 weeks. Me and MaMaw have spent a lot of time at the clinic with him and Gina this weekend. It is NO FUN. We have had a good time here. Jack is easy to entertain and he grins all the time. He loves books and Elmo....and Doritos. He is also eating about 6 popsicles a day! Friday, August 22, 2003 1:08 PM CDT Hello: Gina asked me to do a brief update for her. She and Jack saw the Nurse Practitioner this morning. Jack's rash is getting better and is responding to the medication. She listened to his lungs and they still sound clear. It is just going to take some time for him to beat the parainfluenza. Jack had only lost one ounce since yesterday so they didn't give him more IV liquids. If he has lost more tomorrow, they will probably give him some more IV. Gina said he is eating again and drinking and is acting more like himself. He has a lot of drainage coming out of his nose which we hope means it is not getting into his lungs. They have already scheduled all of Jack's one hundred day check ups and they would prefer not to cancel them assuming he is continuing to do o.k. They are going to try to reschedule his hernia surgery for the week following next week. If Jack doesn't have any more set backs, perhaps the delay in bringing him home won't be too significant. When you think of Jack, please say a special prayer that he will beat this bug that has invaded. Also, please pray for Gina. She is wiped out. Thankfully, as I am typing, her Mom and Sister are arriving in Durham to help her out. I am missing her and Jack terribly. Noah and I are certainly keeping busy but we long to have them home. David Thursday, August 21, 2003 2:26 PM CDT Hello. I know David updated everyone this morning, but Jack and I just got back from clinic and wanted to fill you in. His chest and lungs still sound clear. They did not do an x-ray. He lost another pound (now at 26) from yesterday. They are very concerned with this. His rash is much better today. We started another topical on him yesterday that seems to help. We are giving him a 2 hour anti-fungal IV here at home to help with the fungal rash too. Our main concern this morning was that his is dehydrated. They gave him a 5 hour IV of fluids to jump start him again. He was feeling very sluggish. But now after the fluids, he is talking again and playing and feels MUCH better. This makes me very happy. I get so worried about him that I almost make myself sick. Im going to fix his favorite foods this evening and hope that he will eat. He's not himself yet but much better. Please pray that this infection does not move to his lungs. Tomorrow my Mom and Sister fly in! I can't wait. It has been a month since Rhonda has seen Jack. I know she is anxious. Maybe with Grandma's cooking, Jack will eat up! Until tomorrow! Gina Thursday, August 21, 2003 7:17 AM CDT Good Morning: Gina called and asked me to update the page this morning. Many of you have expressed concern for Jack and we wanted to let you know what is going on. She called the Nurse Practitioner last night and made arrangements for the NP and Dr. Kurtzberg to see Jack first thing this morning. Gina is concerned because Jack isn't eating or drinking much - - he seems weak. We do not want him to get dehydrated. She is going in at nine this morning and they are going to give him some IV hydration. Furthermore, Gina is being insistent that they listen to his lungs daily and they agreed to do another set of chest x-rays to make sure his lungs are still clear. The doctor is optimistic that Jack will beat this but is glad that we are staying on top of things because it could develop into pneumonia which would be very bad. There is a breathing treatment that could be given to Jack but it would require him to be in a "tent" in the hospital for five days. We don't want to go back to the hospital but if it would help Jack we will do anything. Right now, the Doctor is saying this isn't serious enough to warrant the "tent" treatment. On a positive note, Jack slept well last night and Gina said he seems a little better this morning. She said his rash is better. Please say a special prayer for Jack this morning. He has done so well through all of this and we have faith that if God can make a transplant go smoothly, he can certainly handle influenza. Please pray that God will destroy this infection that has entered Jack's body and that he will get over this bug asap. There is a strong possibility that this will delay bringing Jack home. We of course are disappointed by that but we know that God will bring Jack home when he is ready. We are thankful that Jack caught the flu while in North Carolina as opposed to catching it at home. David Wednesday, August 20, 2003 7:42 AM CDT Good morning. Yesterday was clinic day. We left at 9:00 am and didn't get back until almost 7:00 pm. We have had a minor set back. Jacks rash is a yeast infection and he has parainfluenza. This is a highly contagious respiratory infection. He has to be in isolation here at the aptartment. We are not to go out unless its to the clinic. When we go to clinic he is immediatly put in a special room. He had a chest x-ray yesterday which showed his lungs clear. This can be very very dangerous for Jack if it gets out of hand. They are tempted to put him in the hospital for 5 days for a series of breathing treatments. They will make that decision today. Hopefully his lungs will stay clear. We have to go back this morning for a special anti-fungal IV. Needless to say, Im pretty bummed right now because this is going to delay our return to Springfield. At least he was here when he caught this instead of Springfield. The closest Doctor for us there will be in St. Louis. He is feeling better this morning I think. He still doesn't want to eat and lost about half of a pound. The Doctors say it is good that he caught this now as opposed to earlier because this is really hard to get over. Please keep him in your prayers for a speedy recovery. Monday, August 18, 2003 9:20 AM CDT Good morning. I guess if you read yesterdays entry, you know that Jacks surgery was called off. His rash is worse, especially in the diaper area where the doctors were going to operate. He has a horrible head cold and feels yucky. He did not sleep last night. The only person who slept was Noah. Since Jack is on a high dose of steroids to help with the rash, the side effects are restlessness and irritability. Plus add a bad cold and he was miserable. I feel the same way. David is at the clinic now with Jack. Hopefully he will get to see the almighty Dr. K. Jack is the sickest he has been since we have been here but to actually see here takes a great act. Hence you can sense my irritability and aggrivation. He doesn't even want to take his oral meds, so I don't know what they are going to do. I just hope they can reschedule his surgery soon and not delay us going home. Sunday, August 17, 2003 3:42 PM CDT Hello from steamy North Carolina - - Wow, when the sun comes out it warms up quickly. It looks like Jack's hernia surgery is going to be delayed. His rash is getting better but the worst area is right where they will make the incisions. The Doctor's conferred and suggested we put it off for a couple of weeks. It shouldn't delay our departure. No one really knows what the rash is. They don't believe it is Graft vs. Host rash because it doesn't present as GVH and doesn't respond to GVH treatment. This is good because GVH can be serious if it gets out of hand. They have run fungal cultures which have come back negative but then we are told the test isn't really reliable without really scraping the rash which they have not done. It is responding to the antifungal creams. It is much better around his neck and stomach and is starting to get better in the diaper area. The doctors are sure it will clear up. Apparently we all have fungi growing on us that our body handles, but wipe out your immune system and presto, you grow a good crop of something. Jack has also caught a cold. They are going to run a "viral battery" tomorrow or Tuesday to confirm that it is truly a cold and not something else. No one seems too concerned. Just something else to watch. They say he should be strong enough now to handle it. We hope so. Thanks to my Partner Jeff, Lisa, Kim and the Courts for allowing me to rearrange my schedule for the surgery that isn't going to happen tomorrow. I will probably need your help again in a couple of weeks. Please continue to pray for Jack and the people who are taking care of him. David Friday, August 15, 2003 7:49 AM CDT Good Morning! Yeah, today is day 76!!!!!!! David arrived yesterday, thank goodness, about 2 hours before the blackout. We went right to clinic to see the Doctor (waited two hours), because Jacks rash is getting worse. They aren't sure what is causing it and the cream they prescribed isn't working. It was 5:30 before we got back to the apartment and everyone was starved. David had eaten only his pretzels from the flight. We ordered a pizza and Ben and Jerrys. Healthy huh. We had a good evening together. Wednesday, August 13, 2003 8:51 AM CDT Good Morning! Yesterday was clinic day. We did survive, barely. We started the morning out early, only to end it about 8:30 last night. We arrived about 9:00 a.m. I had arranged for a rock-a-baby (volunteer babysitter) to meet us. She took Noah for a couple of hours which helped me tremendously. They rode the rail transit (train) all around Duke Hospital and Clinics, saw the helicopters and pilots who let Noah sit in one and gave him a pilot pin to wear, (he was on cloud nine), went to the MUDD house where the Dr's sit and drink coffee, and attended a birthday party in the lobby of the clinic. Meanwhile, Jack and I were miserable at the mismanaged and unorganized clinic and day hospital. If only they would let me run that place for a week I would have them on the ball and running scared, hee hee. After almost 5 hours we left. Jack did get his IV infusion and vitals taken, but no Dr. in sight. We went back to the apartment for a nap and some hot food and went back. We did see the nurse practioner and a "new" Dr. They said that Jack was doing good and that we were on schedule to come home the week of September 7. Hopefully around the 12th or 13th. They kept his meds the same but he does have a rash which is not the graft-vs-host disease. Thats good. We don't know what the rash is from but they are sending out some medicated creme today. We will just watch it and make sure it doesn't get any worse. Jack was extremely tired when we got home. I still had to hook him up to 2 IV's. I put him to bed and when they alarmed at 11:00 p.m. it didn't even wake him, or stir him. Noah and I watch little league world series and fell asleep on the floor. Jack slept all night without waking up, poor guy was exhausted. But boy do they feel good this morning. Very energetic. I feel sorry for the people who live below us. I know Im to blame for some of that because we play hide and seek and run around the apartment screaming. Sometimes I forget that Im an air traffic controller and not a day care service, HA! Well I need to give them baths and take a shower myself. Its raining again today so I guess we will stay in. Have a great day! Gina Monday, August 11, 2003 8:47 AM CDT Good Morning! We have had a very active and busy weekend. We haven't gone anywhere, we are just busy fingerpainting (big mess), playing trains, reading books and everything else that a four year old wants to do. It has rained (poured) everyday, so Noah and I have not been to the pool in a while. Jack is doing good. He still gets a two hour IV every morning and 2 two hour IV's in the evening. It is becoming quite challenging to keep him entertained in his highchair that long. He sees Noah playing and he wants to join in. Jack has discovered popscicles. He eats 6-7 a day. He loves them. He will walk to the refrigerator and stand there and cry until he gets one. I try to ignore him sometimes but he usually wins. His favorite ones are blue. His whole mouth, lips, tounge are bright blue. Its pretty funny. Friday, August 8, 2003 11:36 AM CDT Hello! The physical therapist just left. We are going to have alot of therapy here and when we get home. These steroids are reeking havic on Jacks muscles. His walking resembles that of a toy soldier. The therapist said that Jack has low muscle tone and she will show us ways to help build it back up. Next week p.t. comes back as well as speech therapy. What fun. Thursday, August 7, 2003 10:02 AM CDT Good morning! Well we are having a good time. Mom and Dad are here for the week. They are staying nearby in an rv campground. They spend the day with us and go back to their camper in the evenings. We are usually worn out by night. Noah is keeping us all very busy. Yesterday he and I went to see Spy Kids 3D. Today we are going to go to Chucky Cheeses for lunch (ARGGGHHHHHHH). I hope I make it out alive. Tuesday, August 5, 2003 5:00 PM CDT Hello: I am back in Springfield and childless. Noah is staying in North Carolina until I go back. It is a strange feeling being in the house by myself. I think Noah and I have become even closer this summer because we have been baching (sp?) it together for so long. It is good for him to be staying with Gina. I just have to keep reminding myself of that. Gina just called me as she was leaving clinic. Dr. K is out of town so Jack saw Dr. Shavoltz (sp?). He was so pleased with how Jack is doing and was very upbeat. He said we shouldn't be concerned about the atrophy to Jack's leg muscles. He said so many of the kids stop walking altogether. He was amazed at how well Jack is walking. Gina explained that we were used to a run so slowing to a walk was a big concern to us. He stressed that it is temporary. He will just have to build back up to a run. He has his first physical therapy appointment on Friday. We will learn exercises that will help him build his muscles back up. The Doctor stressed that he was so impressed with how well Jack is doing. We tend to forget that he has gone through chemotherapy, a lengthy hospital stay and has been on many strong medications. His blood test results were excellent. Gina doesn't have to go back to clinic again until next Tuesday. They reduced his steroid doses again and cut out some of his other medications. Next week they will switch him to an oral steroid so Gina would not have to give him any more IV medications if we could get him to take the magnesium. He spits it out every time so Gina still has to do that by IV. As always, we ask that you continue to pray for Jack. Prayers are being answered. David Monday, August 4, 2003 9:34 AM CDT Good morning: Friday, August 1, 2003 4:21 PM CDT Hello from soggy North Carolina. As I type, it is just starting to pour outside. Gina and I took Jack to see the Doctor who will do the surgery on the Hernia that Jack has developed. He is planning to do the surgery on August 18th. They swear it is not a big deal and will be done on an outpatient basis. They say that Jack's blood counts are high enough that it should not be a problem. We just hate to have him go through anything else. He has been through so much. Apparently a large percentage of the male patients going through this process develop hernias. All of the male patients we know have this same problem and have had it corrected. Otherwise, Jack is doing great. I think I am a good influence on his food intake. He seems to like junk food like I do. Last night Gina ran to the store and left me with Jack and Noah. Jack ate two popsicles, two Kit Kat bars and some Doritos. It is junk but at least it is calories. If Jack loses more weight, we are afraid they will put him back on the TPN. Jack's legs have gotten a little weak. One of the side effects of the steroids is that it causes the muscles in the legs to atrophy(sp?). The doctors say this is just temporary and will go away when he finishes the steroids. He should be off of the steroids after day one hundred. In the meantime we are working with him as much as possible to strengthen his leg muscles. We are supposed to have a physical therapist coming to see Jack but they haven't showed up or returned our phone calls. We have called Doctor K's staff about this several times but still no physical therapist. Like any large institution, this place isn't very well organized. The left hand doesn't know what the right hand is doing. It is amazing to me that they can perform miraculous medical procedures but they can't get a physical therapist to call you. Oh well. Jack really is doing great and his doctors are thrilled with his progress. What a blessing. We aren't updating the website quite as often because there isn't a whole lot going on right now. No news is good news for us right now. Thanks to my Mom and Dad for continuing to run the airport shuttle service and for taking care of our house while we are gone. I also don't know what I would do without you guys to watch Noah while Gina is here. Noah has had a great summer of garden tending, peach picking and just general goofing around. He is getting to experience how I grew up. Gina and I hope to slow our life down a little bit when we get home so Noah and Jack will learn more of the simple pleasures of life as opposed to being shuttled back and forth between activities. Please continue to pray for Jack. He is doing so well but there is still a lot of healing that needs to occur. Love David Wednesday, July 30, 2003 10:00 AM CDT Good Morning! Well Jack and I had a long, long day at clinic yesterday. Tuesdays are the day we see Dr. Kertzburg and she is in high demand. We arrived first thing at 9:00. They have to get Jacks paperwork, get his vitals and assign us to a private room that has a heppa filter in it. This is so Jack can take off his mask. We were in a room by 10. Here Jack gets his infusions. On tues. he always gets IVIG, which is an immune booster and virus fighter, (i think). He gets so many meds that I forget what is what. After that he gets all vitals taken again, and again, and again, to make sure he doesn't have an adverse reaction to the meds. They then kicked us out of the "clean air" room to a not so clean waiting room. Here we waited 3 hours without so much a word from anyone. Well, I have patience but Jacks had run out, (so had the doritos). So we left. Which is unheard of. You don't leave without seeing the Dr. I told the nurse to tell the Dr. that Jack would be back after a much needed nap and a hot meal. Hmph! So we went back at 6:00 pm and saw the Dr. (we were all smiles) and everything is all good. They are reducing one of his meds and prescribed two more pills I need to crush. ARGGGHHH! But Jack is doing very well. We were home by 7:30 just in time to hook him up to his IV pump. We are staying home today and chillin'. Monday, July 28, 2003 5:28 PM CDT Hello again! It was soooo great having Sam and Becky here. We had a really good time. I even got to show them the Duke Gardens. We fed the ducks and walked on some of the trails. Jack can go outside in the early morning before the sun gets to hot and the bugs come out. Thats fine by me because me and "bugs" don't get along to well. Especially the ones here. They just seem alot bigger here. Don't tell Noah, he will never go outside again, hee hee. Anyway, I fixed lunch for them. Sam had a "hamburger" while Becky and I ate soy burgers. Becky and I giggled all through lunch and Sam doesn't know for sure if his was beef or not, ha! We finally ate at Fosters Market (take out). We had that for dinner and it was so good. Sam took me to the grocery store to stock up and remind me to never let him go shopping again! He spent $128 on groceries. Im still trying to find room for everything. Noah will have a blast going through all of the goodies this week. Just keep them hidden from me. Those Krispy Kreme donout holes are calling my name! Bad! Bad! Hee hee. Again, it is hard to see them leave. Thats the worst part of it all. David and Noah fly in on Thurs. David and I will celebrate our 7th wedding anniv. this weekend (along with Noah and Jack). So much for a romantic dinner with the cheese balls flying from Jacks tray. At least we will all be together. When David goes back on Mon, he is going to leave Noah here! Yeah! I will have him for 10 days all to myself! I better catch up on my sleep now! David is on his way tonight to pick up Noah. They went to Dixon on Sat. to celebrate Samanthas 19th birthday, my niece, Rhondas daughter. Noah spent the weekend with my Mom and Dad. Dad had a baby calf in the back yard on the cattle trailor that they were bottle feeding. I guess Noah got a big kick out of that. That is until he tripped in the trailor and fell in 'you know what'. (me giggling) I do want to say a special thankyou to Noahs grandparents, Bill and Gondy Shuler and Stan and Lorene Hayes. They have helped amazingly with Noah this summer. They have watched over him and have taken the best of care. Not to mention the good food you have fixed for him, the weiner roast and trips to the farm to see the horses and cattle, going to and from pre-school, picking peaches and working in the garden, and all the other special things you have done to make this a great summer for him that he will never forget. I appreciate you and love you for that. I will write tomorrow after clinic. Hopefully Jacks med will continue to get weaned. Love Gina Saturday, July 26, 2003 3:44 PM CDT Hello from North Carolina, Friday, July 25, 2003 2:08 PM CDT Good afternoon! Jack and I just got back from clinic and cruising. Driving around town is a big outting for us. All of Jacks labs were good except for magnesium. I will have to give him an IV of mag tonight. He lost a pound since tuesday and his blood pressure was really low. I guess the medicine is working. Wednesday, July 23, 2003 11:55 AM CDT Hello! I know its been a while since I wrote last, but Ive been a little busy chasing Noah and Jack. We had a great weekend. David and Noah left yesterday but missed their flight in Chicago and had to overnight it there. They will get in Springfield sometime today. It was sad to say goodbye as usual. I love the company, but it is always so hard to go back after people leave us. Its like Im never going to get home. But one day I will be the one getting on the plane! I can't wait. Hopefully that will be in September. Sunday, July 20, 2003 1:33 PM CDT Hello! David and Noah arrived on Friday. They were delayed in Chicago for an hour, so Jack and I circled the airport many times. Around and around and around. But at least they got here. Jack was sooooo excited. He was laughing and clapping his hands. Ive been to the pool with Noah today and David is down there now. We have had a good weekend so far. Last night we drove for an hour looking for Eno River. We never did find it, but I hear it is close, hee hee. I know we were close. Tonight our mission is to find it. Friday, July 18, 2003 9:31 AM CDT Hello! Im so glad that this is Friday. Normally my days run together and I forget what day it is since they are all the same to me, especially when we were in the hospital. But, today Noah and David fly in! Jack and I will pick them up around 4:30. Jack will be so excited. Me too, Jack is becoming a Momma's boy. He is very clingy and sometimes cries when I walk out of a room. I really need a break. Soooo, David have a nice weekend, Noah and I are going to the pool, ha! Just kiddin', (not). Thursday, July 17, 2003 6:57 AM CDT Good Morning, and how is everyone today! Jack and I are doing good. Its a little quite around here since Mom and Dad left, (especially Dad). He and Jack had quite a time making funny sounds with their mouths. They arrived home safely and busier than ever. I think Dad is still counting the cows and horses, hee hee. Monday, July 14, 2003 11:51 AM CDT Hello! This has been a very good and active weekend. Mom and Dad have played and entertained Jack. He has had alot of fun with them. Saturday and Sunday, Jacks blood pressure was slightly elevated so they put him on blood pressure medicine. This is a very common side effect of the steroids that he is getting. As they cut back on the meds they will take him off of the b.p. medicine. Unlike Dads medicine, Jacks is a liquid strawberry syrup, ha. Good morning! It is so funny, as I sit here in my bedroom typing, I can hear mom and dad with Jack. They are lauging and talking loud. Jack throws a toy and say "uh-oh" and they pick it up, wipe it off, and give it back. They are having a great time. Jack loves the attention. He looks to mom to see if she is watching him and then he talks to dad. If I only knew what he was saying. And he is so serious when he talks, he almost frowns. He cracks me up. Friday, July 11, 2003 4:44 PM CDT Hello: David Here. Gina is busy entertaining so I am doing the update. More good news today. As many of you know Jack has had to have transfusions of plateletts every few days. We are very excited because his platelett counts have been holding steady and actually increasing on their own this week. The Nurse Practitioner said this is yet another very good sign that he is engrafted and making his own red blood cells. They have completely taken him off of growth hormone so he is producing the cells on his own. His White Blood Count is also doing what they had hoped for. It is dropping to normal levels but not at a drastic rate. Another sign that his body is regulating itself as opposed to needing hormones. Gina says Jack is really enjoying having Grandma and Grandpa Hayes visit. He is very active and having a very good time. Please pray that Jack's recovery will continue. He is doing so much better than what we had even dared to hope for. We are praying that he keeps improving daily so he can come home when he hits day 100 (September 7th). Gina wanted me to say hello to everyone at the tower, our friends at church and our other friends and family. She misses everyone so much. Right now we are talking about switching places so Gina can come home on July 31st through August 4th. She doesn't really want to leave Jack but realizes she needs to come home if only for a few days. The only downside is that we won't be together for our anniversary on the 3rd (7 years). We will have to celebrate when Jack comes home. Noah and I are going back down to NC on the 18th. Noah has been such a trooper through all of this. I think that he is learning some good lessons. Well enough for now. Keep praying - - David Thursday, July 10, 2003 10:10 AM CDT TODAY IS A DAY OF CELEBRATION!! I just received Jacks test results on his donor match. Jack is more than 99% donor cell! They said they did not find even a trace of Jacks cells. It is almost impossible to ge 100% donor engrafted, but they said Jack is as close as you can get. This all means that Jack is HURLER SYNDROME FREE! He is growing the new enzymes he needs to live a full, long and healthy life. I am overcome with emotion today. This is what we have been waiting for. And today my parents are flying in!! woo hoo!!!! Forget the veggie burger Dad, we are going to celebrate in style, Pizza!! Just kidding, I guess I better buy him a steak. Gosh I am so thankful for Gods answered prayers and for everyone who has been praying for Jacks success. I just cannot believe it. The nurses at clinic today were so excited and said that Jack has done about as good as he can. Wednesday, July 9, 2003 3:55 PM CDT Hellllloooooooooo!!!!! Sorry that I haven't written but I am chasing Jack around allll of the time. We have been really busy. I can't tell you how much fun we had when David, Noah and Rhonda were here. We got to go to the pool 2 days in a row, have picnics, shop, eat out, it was like we were a family again. We did not go to the Duke Gardens though, it is so stinkin' hot here. Whew! Poor Jack. Everytime he steps foot out of this apt. he has to wear his face mask. It is so hard to breathe out of and then put the heat on top of that. We were in and out of clinic today in less than 2 hours!! Woo Hoo! They have cut back on some of his meds. The 2 hour IV that he normally gets at clinic everyday is now given by a pill that I have to crush and make him eat. The first 2 came back up. I have to be really creative with what I mix it with. They cost $2 a piece and given twice a day. Thats after insurance! His appetite comes and goes. He is still on liquid food 12 hours a day, given at night. Im getting the hang of things now. No more running to the other room anymore. It would be silly now that there isn't anyone here but us. ha. Tuesday, July 8, 2003 7:39 AM CDT Gina asked me to do a brief update because she was heading off to clinic with Jack. This is the day that Dr. Kurtzberg sees her patients so it could end up being a long day at clinic. Jack is still doing great. His white count continues to go up so they decided to completely withdraw the growth hormone he was being given to promote cell growth. They will monitor his count closely to see if he is maintaining appropriate levels without the hormone. Noah and I got back to Springfield really late last night. It was such a bummer to leave Gina and Jack. I was there for 10 days following Jack's discharge and I guess I really "reattached" to them. That may sound strange, but it is not as hard to leave when I have only been there for a couple of days. Noah came down on the Fourth and was very good. He really likes it there now that Jack is out of the hospital and back in the apartment. It was like we were sort of a "normal" family again. Noah didn't want to leave either. We were tempted to let him stay but with Gina going to clinic daily, that is really not an option. Maybe later. Today is day +39 so if all goes well, Jack could come home in 61 days. Please pray that God will protect Jack from any possible infections, viruses or other bugs. Jack is feeling so good right now that sometimes we forget how fragile he is. A simple cold could be catastrophic for him. Gina may do another update late today if she gets any news from the doctor. Gina's Mom and Dad are going to Duke on Thursday. Gina is so excited, she and Jack haven't seen Grandma and Grandpa since Easter. Please pray that they will have a safe trip. As always, we are very appreciative of the prayer support we are receiving. So many things have worked out for us that we know that it must be God's hand. David Saturday, July 5, 2003 8:31 PM CDT Happy Fourth! Sorry this is so late but we have been very busy this weekend. Rhonda and Noah arrived at 1:30 yesterday, and I don't think we have slowed down. We have had an awesome weekend so far. Jack is feeling very good. And ohh you should have seen his face when he saw Noah. He sqreams and shakes his hands like the hulk. He gets so so SO excited. We have laughed more this weekend then ever. Rhonda has been a big help watching the kids while David and I went to dinner tonight. Of course we had to be back by 6:30 to start his IV's for the night. We spent the morning at clinic and got out on record time and then rest of the day at the pool. This was my first time all summer, I wore baby block spf 50, hee hee. We bought a bunch of fireworks yesterday and shot them off last night and we ended up having a gathering around us to watch. Noah really enjoyed that. Rhonda and Jack watched from the window. We were to go to Dukes firework show but I guess they decided not to have one. We waited on the top deck of the parking garage for 45 minutes and no show. Thats ok because we had our own with Noah. Its not the same as being in Springfield but as long as we are all together it doesn't matter. Tomorrow should be about the same; clinic, swimming pool (with a picnic). The weather has been perfect. I will write more tomorrow! Good night, Gina! Thursday, July 3, 2003 11:44 AM CDT Hello Friends and Family: We got out of clinic today in record time. Just under three hours. I guess throwing a fit does pay. Actually, they just didn't seem to be quite as busy today. We didn't see a doctor today but the nurse practitioner said that all of Jack's counts look great. His white blood count was down today but it was supposed to be down since they are cutting back his steroids. They basically wean him to the point where his body can maintain normal levels without the aid of outside steroids. The Nurse Practitioner said things couldn't be going any better. Jack is playing and becoming very active. In the evening we hook him up to his IV meds at about 7:00p.m. He no longer wants to stay in his high chair so we follow him around carrying the portable pumps. It can be a challenge at times. We have been getting the scoop on where to park to watch fireworks tomorrow night. Noah and Rhonda will be here and we promised Noah that he will get to see some fireworks. There is a fireworks show at the Duke Stadium. The nurses told us the best place to view it is from the top of the parking garage where we go to clinic every day. So that is our plan. Happy Fourth to everybody. We wish we could be home to do our typical picnic and to attend the James River Assembly Fourth of July Celebration. We miss you all. David Wednesday, July 2, 2003 3:41 PM CDT Jack is helping me type in the update today. I am blaming any errors on him. He is fascinated by the computer. He is doing great. He slept well last night and actually ate breakfast this morning. They cut his TPN (liquid food) in half yesterday so he seems to be more hungry. We can't wait until he is off of the TPN. It is the hardest IV that we have to do. They also cut back some of his steroids and cut his Lasix in half. The clinic was a zoo today. What should have taken two and a half hours took over five hours. They lost our paperwork and then the pharmacy couldn't find the doctor's orders for Jack's meds. Jack was so good until the very end. He had finally fallen asleep for a nap and a nurse came in to check his blood pressure. He threw a fit like I have never seen. We had to calm him down so his blood pressure would go down and we could be released. The nurse thought something was wrong but I explained to her that he was just mad. We put him in his stroller and he started waving bye-bye and his blood pressure went right down. She told us to make our escape. To put it mildly, clinic is crazy. I can't believe they are not better organized. I am really concerned about Gina trying to do it by herself next week. Some parents have told us that if your child throws big fits that they will work you in quickly. We may be out in record time tomorrow. Thankfully after day 45 Jack won't have to go every day (assuming all is going well). Tuesday, July 1, 2003 1:19 PM CDT Hello!! Gina here. Wow, what a transition it has been the last couple of days. I mean it. I have been so busy learning how to administer Jacks meds or chasing after him that I haven't had time to update. Not to mention that we just got our phone hooked up again. Our phone number is the same (919) 383-8043 and our address is 722 White Pine Dr. Durham, NC 27705. Saturday, June 28, 2003 3:12 PM CDT Hello: Well Jack is officially discharged from the hospital. He had his confetti party and everyone cheered for him as he walked out the door. We actually had to pick him up and carry him because the cheering and clapping scared him. He didn't know what to think. I don't think he realized what was going on until we put him in the car and the car seat. He just grinned from ear to ear when he got in his car seat. He is having a great time at the apartment. He is walking everwhere and is talking and jabbering constantly. He is happy to be out. The home health nurse is coming morning and evening for a couple of days until we get the hang of things. He still has a few IV medecines for now. However, most of the time he is not on IV. He likes the freedom of not being hooked up to a machine. The meds should get easier as we go along. He is still on the liquid food which runs over a 12 hour period at night until he starts eating more regularly. The routine will be easier once he gets off of that. Jack's WBC was over 17 today so they will start to further wean him from hormones. We just wanted to let you know all is going well. We moved to the new apartment today and it is so much better. It is spotless and the air conditioning actually works properly. Our new address is 722 White Pine Drive as opposed to 701. Our telephone number stayed the same. Getting discharged is a huge step in the right direction, but please keep up the prayers. Please pray that Jack will fight off any bugs he might get exposed to now that he is out of the sterile environment.
Friday, June 27, 2003 11:30 AM CDT The day if finally here!!!!!!!!!!!!! Jack will be discarged around 2:30 eastern time today!!! I am on my way to pick David up at the airport. We have so much to do today. I am loaded down with meds. and IV's. A nurse will be coming in the morning and at night for a while to help get set up and used to things. It is hot and VERY HUMID here today. Jack was at 14.0 today and is feeling good. He is ready to leave the hospital and so am I! The way things look, we will moving to the other apartment tomorrow. I am anxious to get settled. Well, I have to get ready for a PARTY!!!!!!!!!! Bye Thursday, June 26, 2003 4:38 PM CDT Hello Friends and Family: Jack is doing great today. His White Blood Count was up to 12.5. Dr. Kurtzberg came by and said she is confident that Jack is ready for discharge. Gina is sooooooo ready to get out of the hospital. Jack should be out and at the apartment this time tomorrow. Wednesday, June 25, 2003 5:06 PM CDT Hello: A brief update. Jacks WBC was up to 8.5 today. When I talked to Gina, Jack was unhooked from his IVs and had been walking the halls. They are getting him ready to go on Friday. When we take him to the apartment, he will be off of the IV during the day. We will have a portable pump at night to take the nutrition. That may not last for long because Jack was showing a lot more interest in eating today. He may also need some meds at night via a portable pump. Most of the meds are now oral. Tuesday, June 24, 2003 5:58 PM CDT I just got off of the phone with Gina and I wanted to do a quick update. All is well. Jack's WBC was up slightly to 6.9. The Doctor was in and said he is ready to be realeased. He is scheduled to be released on Friday. I am flying down on Friday morning and we will take him to the apartment Friday afternoon. One slight complication is that we will be moving to a different apartment in the same complex on Saturday. Our upstairs neighbor's shower was leaking through our bathroom ceiling. To further freak us out, I was cleaning the furnace filter on Saturday and discovered moisture and what I thought to be possible mold around the furnace. Jack can not be around mold. To make a long story short they have an upstairs apartment in our same building that just opened up. The manager agreed that it would be better just to move us to that apartment. As she explained, North Carolina is very moist and sometimes the air conditioning in the downstairs apartments doesn't really run enough to totally dehumidify the air. This is further complicated because the apartment we are in is completed shaded by large trees. They are repainting the upstairs apartment, putting in brand new carpet and she has assured me it will be spotless and have no moisture issues. The manager actually suggested the move which was really nice of her. A lot of transplant patients live in the complex and she understands that they can not be exposed to anything. We really appreciate her understanding. Please keep praying that Jack continues to do well. He is starting to eat a little bit. He seems to like salty things. The Doctor said that for some reason the kids prefer things like cheese and crackers as opposed to cookies and the like. He won't eat an Oreo but he loves cheese and crackers. Go figure? David Monday, June 23, 2003 4:37 PM CDT Hello!!!!!!! Jacks cells are 6.8 today!! Yippeeeeeee! Yahooooooo! I can't believe it. He had the body rash yesterday and rosy cheeks, so he was really busy growing cells. I took David and Noah to the airport this morning and they made it back to Springfield by 1:30 today. We had a GREAT weekend. The weather was awesome and the humidity low. I really enjoyed myself so much. Noah and I sat by the pool and had a picnic and blew bubbles and chased them, went to the museum, took a loaf of bread to the gardens and fed the ducks, ate out (mmmmmmm) and laughed at each other all weekend. He was so good and sweet. We had a volunteer to sit with Jack a couple of times so we could have family time. We went to toys-r-us and bought a baby bed and mattress, and everything I already have in Springfield for Jack. What am I going to do with everything when we leave here. It's like furnishing another house. Im sure we can donate alot of stuff to other families in our same situation. As of right now, our discharge date is.............Friday!!!!!!!! Dr. K is alittle frustrated with me because we were to go tomorrow. But they require both parents to be here because it is a big day and a little stressful and overwhelming. We asked for Thursday and then Friday, so we won't change it again, promise! The nurses and staff have a big confetti party and cheer as you walk out of your room and down the hall to leave. I get emotional just thinking about it, because I never imagined we would be leaving here so soon. The avg. is 55 days and we have been here 32. It is going to be awesome to hold Jacks little hand and let him walk out of here on his own. sniff sniff. I know David was alittle bit reluctant to leave here but Im ready. I know how to change his caps, draw meds, flush lines, now what is their 24 hour hotline number for help. hee hee. God has surely blessed us, given us strength we didn't know we had, and freed Jack from a horrible disease. Have a GREAT day!!!! Gina Sunday, June 22, 2003 9:14 AM CDT Good Morning. David here again. Jacks white blood count took another big jump up to a whopping 4.4. He is doing great. He slept well last night and was bright eyed and bushey tailed at 6:45 a.m. I could have slept in. He is doing fantastic. The Doctors are still talking discharge. We are actually trying to push the date back. We want to make sure Jack is reaaaaaaaally ready. We are also a bit intimidated by the thought of administering meds and doing blood draws. Gina has been doing it and feels like she will be ready in a few more days. We think they will push his discharge date back to Friday for us since they have empty rooms up here. We are hoping our Best Buddy can come by today because it is absolutely beautiful outside. Noah loves going for walks through the Duke Gardens. It also wears him out. He is being really good but a hospital is no place for a four year old. Gina and I have been basically taking shifts in Jack's room. Noah has been in the room some but he just can't stay for very long. Please keep praying that things will continue to go great for Jack. One simple infection could throw him for a loop. Thank you all so much for your prayers - - It has made a huge difference. Better go now. I have a baby bed to put together and an apartment to sanitize today. David Saturday, June 21, 2003 8:08 PM CDT Sorry to be so late posting to the site. We have had a great day. Noah and I agreed to be bumped for free tickets yesterday because the next plane was only 1 1/2 hours later. That plane had mechanical problems so we ended up not getting here until almost nine o'clock. We had a good time. I can't believe how patient Noah was in the airport. He likes to people watch and ask questions. I can't believe how great Jack is doing. He is back to his old self. I stayed with him last night. He woke up a couple of times and I enjoyed the opportunity to hold him. He wasn't really crying, he would just start playing the musical panda attached to his bed. This morning we played peek-a-boo. He laughed so hard it brought tears to both of our eyes. It is so good to hear him laugh again. He is doing great. Best of all his White Cell count was up to 3.6. Keep growing cells. He really does seem ready to be discharged. I just don't think we are ready. We are going to try to put the Doctor off until the end of next week. The unit isn't full so there is no one waiting to get in. We want him to have every chance to grow stronger before we check out of this place. We have been so blessed. We just don't want to rush anything. David Friday, June 20, 2003 7:13 AM CDT Good morning! Jacks white cell count is 3.1!!!!! He is doing great! The doctors told us yesterday that he could leave the hospital by tues or weds of next week!!! Oh my gosh!! I wasn't ready for that! As long as he continues to do good and doesn't get a fever or infection we will go to our "Durham home" next week. AAAAGGGGGGHHHHH!! I need to buy a baby bed, a mattress, have the carpets cleaned, spray for bugs (spiders are everywhere in N.C.) have the apt. sterilized, buy groceries, and...... oh my list goes on. Wow. David and Noah fly in today and go back on Monday. I talked to Dr. Kurtburg and asked her if leaving on thurs would be ok, because I don't want to rush it. Jack and I are in a sterile environment here and I just want to make sure everything is perfect when we leave. She said not a problem and that most families do the same thing. Whew. Besides, David won't be able to get back here that quick. I really need him here because we have so much stuff to take to the apt. and lots, LOTS of medical supplies to take. The discharge nurse is going to come by this morning to start talking about everything when we get out of here. I could become a certified nurse when I leave here. This is great news! I never imagined we would be able to leave this early. Today is +21 days post transplant and they told us the average stay is 55. Jack and I are going to be busy today making cards with stickers and crayons and tracing our hands. We might even get the tounge depressors out and make some picture frames, minus the saliva, hee hee. Keep on praying for a smooth transition and no infections. Noah has had a cough this week so he can not be on the unit to see Jack. He will have all summer at the apartment to play with him. Have a great weekend! love Gina and Jack! Thursday, June 19, 2003 11:27 AM CDT Hello everoyone!! Jacks white cell count day today is 2.4!! My feelings and emotions are speechless joy. We slept great last night and have had a great morning. We already took our walk and ride in the hallway. Physical therapy and occupational therapy were here to work and play with Jack, but they took one look at him walking in the hallway waving at everyone, that they turned around and left. They said their work is done. Im just so pleased and grateful that Jack is so strong and happy. God is an awesome God and has carried Jack through everything. Wednesday, June 18, 2003 3:58 PM CDT Doctor Kurtzberg has not been in yet today. Dr. Martin was always in by 1:00 or 2:00 in the afternoon. Dr. Kurtzberg is Jack's primary physician but also has the responsibility for being the director of the entire stem cell program. She is an awesome doctor - - Just very busy. Jack's white blood count was up to 1.9 today. His combined count was somewhere over 1400. So it sounds like things are continuing to go well. The only concern today is that Jack had some stomach pain earlier and threw up. They have completely weaned him off of the Morphine and we are trying to reintroduce him to regular food. We are guessing that he just isn't quite ready to start eating yet and may be having some side effects from ending the Morphine. I think Gina is in better spirits today. She is just really missing everybody. Just from my few days and nights in the hospital, I experienced the feeling of being completely disconnected from the world. I truthfully can say that I could not do what Gina is doing. The four walls would close in on me very quickly and send me over the edge. She is incredibly strong and dedicated to Jack. Tuesday, June 17, 2003 6:04 PM CDT Sorry so late doing the update. The Doctor did not get by until after 6:00 p.m. Jacks White Blood Count was down a little today to 1.4. The doctors told us it would fluctuate. As Gina has mentioned, they use a formula comprised of several blood counts to determine if Jack has engrafted or is engrafting. If that formula results in a number over 500 for three days in a row, they consider him to be engrafted. Jack's first day was in the upper 600s and the past two days have been in the 900s. Thus they consider him to be engrafted. This is what we have been shooting for. The Doctor's believe Jack is over the hump but they don't consider him to be out of the woods until day 100. We have a long way to go but things are going as well as possible. Please keep praying. We believe prayers are being answered. Gina wouldn't want me to mention this but she is getting worn slick. She has been in Durham since Easter Sunday without a break. Please pray for God to give her strength. We are trying to plan a time to switch places so she can come home for a few days. She has mixed feelings. She desperately wants to come home but isn't ready to leave Jack. The Doctors' are thinking that Jack may be able to be discharged to the apartment in the next couple of weeks if everything continues to go well. He has to start eating consistently and get off of the some of the IV medications. They are moving toward that goal. That is all I know for now. Thanks to each of you for your prayers and support. David Monday, June 16, 2003 10:14 AM CDT Hello!! First I wanted to tell my Dad, Happy Fathers Day and I love you very much. I wish I could have been there but it sounds like Sam and Becky took good care of you guys. Jack is doing wonderful. His white cell count today was 1.8. I am speechless. I just am amazed at how well he has done. He really had none of the side effects they warned us about. I am almost obsessive with his care. The nurses have commented on it even, but in a good way. I just can't imagine if I didn't do his mouth care every other hour or wash his bedding Daily, or give his a bath and scrub him, or rub him with creme from head to toe 2-3 times a day. I change his diaper every other hour with creme and powder too. Ok, so I'm obsessive compulsive but he has not had one mouth sore or bad rash of any kind! He is such a trooper and can take anything. As Rhonda knows, it is a 24 hour job with him because there is always something to do or wash and you just don't get to sit down until he sleeps. I wouldn't have it any other way. Rhonda was a big big help to me. Jack was in the best mood ever this weekend and he and Rhonda had a very good time. Jack laughed and babbled non stop. He is even saying a couple of new words. Rhonda and I got to go eat out last night. Thay was great. Of course we talked about Jack the whole time, hee hee. Today the nurses are teaching me how to change out Jacks lines and give him medicine and draw blood. I know, you are all thinking, "Gina, drawing blood?", but I did. I think Im ready for nursing school. Well, I took Rhonda to the airport at 6 this morning and already had my morning nap. Rhonda bought the new James Patterson book for me so maybe I can get a chapter or two read today. Also, David, Happy Fathers Day to you too! You are the best caring, loving and patient father ever. I love you, respect you and admire everything about you. God has heard our prayers and has carried Jack through the toughest part of this journey. Now I just pray for his continued success, strength and for a speedy summer. Our target date is September 7. That is 100 days post-transplant. We still have alot ahead of us, but as Jacks doctor told me yesterday, he is over the hump!!! Again thanks to Courtney and the Nascar gang for visiting, that was AWESOME!!!!!!!!!! Gina Sunday, June 15, 2003 9:13 AM CDT I'm baaaaaaaack....it's Aunt Rhonda. HAPPY FATHER'S DAY! We need a BIGGGG drum roll today. Jack is at 1.1!!!!!!!! Talk about a celebration! He is very active today and I am already worn out. He doesn't have a rash today and is already down for his morning nap. Whewwww! Now I can have a Diet Coke and relax for a few minutes. Everyone is very excited around here because Jack is doing so well. He will still have some rough days, but for the most part he is over the hump. Yipeeeee!!! He will get his morphine lowerd today. We are trying to get him to eat more so he doesn't have to get his nutrients through the IV. He and Gina slept good last night. Gina didn't even know that the nurses had come in and changed Jack's diaper. Jack got to talk to Grandma and Grandpa Hayes today...actually all he did was laugh but at least they got to hear him. Gina has a volunteer coming at 4:00 and we are going out to celebrate Father's Day.....on Sam....HA. Saturday, June 14, 2003 11:15 AM CDT Good morning! Aunt Rhonda here. Jack's cell's are raging out of control at .7! Yeeeeeeee-hawwwwwww! OH MY GOSH! Jack had special visitors today. The pit crews from the Jeff Gordon and Terry LaBonte race teams. Whoooo hoooo! We had so much fun. They loved Jack and said that they had been keeping updated on his web site. They were so excited to see him. They brought gifts for all of the children and a ton of food and snacks. I even got a NASCAR shirt. Needless to say, Gina and I were excited to see them! They are very caring people and help a great deal with the children's unit. Friday, June 13, 2003 11:38 AM CDT Hello, and how is everyone today? Jack is doing good. His cell count is still 0.4. Thats good because they said that it may go down before it goes up again. They are weaning him off of the morphine and hopefully will take him off of it this weekend. I think that is great! He doesn't really need it, I don't think. He is his old self today. Playing, throwing toys just so I will wipe them off and make my hands even dryer from the alcohol pads, playing patty-cake, and saying "daddy" all of the time. I walk around the room saying "mommy, mommy, mommy" and he laughs and says "daddy daddy daddy". Hmph. The Doctors love checking in on Jack and seeing his smile. I think they are amazed and delighted because at times this ward can get pretty gloomy. Again, there are kids from all over the world here right now. We have met some really great people. Please continue to pray for Jacks cells to continue to grow, for him to remain strong and healthy and infection free. Rhonda should be here around 11:00 p.m. tonight. Uh, sorry, the apartment key is here with me. I'll see you around midnight? hee hee. love gina Thursday, June 12, 2003 8:18 AM CDT Good morning!! Jacks white cell count is........0.4!! Today is day +13. Just 87 more to go. Jack slept good last night. We did have a bit of a scare this morning. Jacks blood pressure gets low at night, but this time his oxygen level was really low. They gave him some oxygen for about an hour and seems to be doing fine now. They did a chest x-ray on him, and im still waiting for the results. They just want to make sure there isn't any fluid on his lungs. I guess I was tired because I slept through the whole thing. The nurse said there was 4 people in the room, lights on, x-ray machine, and I slept!! Thats o.k. because Jack slept through it too, hee hee. David and Noah made it home last night, boo hoo. I was sad last night. I hated to see them go. I just wanted to go home so bad. But as long as Jacks cells are growing, everything is alright. Who is watering my flowers.....Noah. Hey Rhonda, I found this great little sidewalk cafe that serves latin-american food. We will have to try it this weekend. I can't wait for you to get here. I better get a volunteer for a couple of hours. Oops, my coffee is done. W00-hoo! I better go check on Jack, he sleeps alot. I had him in his highchair this morning and we were watching cartoons and playing patty-cake and he fell ASLEEP! Poor little guy, he is working overtime making those cells. Grow cells grow!! Thank you God. gina Wednesday, June 11, 2003 6:56 AM CDT Yipeeeeee!!! God has been so good to Jack and is answering our prayers. Jacks white cell count today is.... drum roll...0.2!!!!!!!!!!!I can't believe it! He is so strong and is doing amazingly well after everything he has been through. I know he doesn't feel good and he is getting enough morphine to knock me out, but he is still giving a smile and saying "BYE" with a southern accent. Im overjoyed this morning. I counln't wait to tell someone, so I knew Stanley Hayes would be up early, 4:30 a.m., so I called. I know Popi Shuler is awake so I better call him too! I was showered, hair done, make-up done, laundry done, drank coffee (im getting hooked), all by 6:00 a.m. I couldn't go back to sleep. Jack slept all night without waking up. I don't think I moved. Noah has been keeping me really busy. We went to see Finding Nemo yesterday and we played outside most of the day. He has been very good but very busy. David and Noah leave to day and Rhonda will be back for the weekend (I will leave a map in the truck, hee hee). Well it's going to be a great day today. The sun is shining and JACKS CELLS ARE GROWINGGGGG!!!!!!!!! I better go and drink some more coffee before Noah gets here, we are going out for a picnic and play ball at the gardens. David has done an awesome job with Jack. He has rubbed creme on him to lighted the body rash, (which is almost gone today), he has given him a bath, mouth care, held him allll night, and stayed with him so much so I could spend time with Noah. THANK YOU!! I just wish he and I could have some time together. But, we did get some family time together and laughed and had a great time. Please keep praying for Jack to stay strong and for his cells to continue to grow. Today is +12!! God is Awesome!!! gina Monday, June 9, 2003 2:49 PM CDT The big news today is that Jack has a trace of a white blood count. It was .1 today. It has been showing zero since he completed his chemo. Everyone says Jack's transplant so far has been text book as to how it is supposed to work. His rash seems to be a little more severe today. They have been giving him high dose steroids (they call it a steroid pulse) to keep down the fever and to aid engraftment. The doctors feel that he is showing all the signs of engraftment. As they warned us, the steroid pulse has made him irritable. I stayed with him last night. He slept most of the night in my lap. Everytime I would lay him down, the nurses would come in to check something and wake him up. Then he would want to be held. It seemed easier just to hold him. We have been told that the engraftment process is actually painful. It causes an aching in the bones. The rash makes him itchy and the steroids make him irritable. Altogether, not real pleasant. The Doctor's say Jack is quite the trooper. He isn't screaming or having fits, he just isn't acting like himself. He still says bye-bye whenever anyone leaves the room but he absolutely did not want to walk today or even ride in one of the wagons. He has a morphine drip during this period of time. We can push a button to increase the dose if he seems uncomfortable. Sunday, June 8, 2003 1:27 PM CDT Hello from Duke. Jack had a high fever last night and this morning. It ranged from 100 to 104. Gina stayed at the hospital last night so she didn't get a lot of sleep. Jack is developing a rash and a slightly runny nose. The Doctors are very pleased. Fever, rash and a slightly runny nose are classic symptoms of engraftment. The doctor said we should start seeing white blood cells coming back soon. I said, I just hoped they would be the donor cells as opposed to Jack's cells. The Doctor said he wouldn't be getting the rash if it was his cells coming back. The way he put it, "somebody elses cells are growing in there" This made us feel very good. We certainly are not out of the woods but the doctors say things couldn't be going any better. Pray for the cells to keep growing and for infections to stay away. We have a rock-a-baby coming for a couple of hours this afternoon. We are going to go eat some real food and take Noah to the bookhouse (Barnes & Noble) Noah is being better than we expected other than a few ugly episodes. He and Jack are watching a Thomas the Tank video right now. I have to sign off for now. Jack is wanting to take a nap so Noah and I have to get out of the room. As always, thank you so much for your prayers and help. Love David, Gina, Noah & Jack Saturday, June 7, 2003 3:31 PM CDT Hello! The Doctors were just in to see Jack, which he is running a fever of about 101, and they think.....He Is Engrafting!!!! Grow cells Growwwwww! They also said he is doing reallllly good. That is music to my ears. They really are amazed that he has not had any side effects yet. I just pray things go well in the days ahead. I am so thankful for all of the prayers being said everyday for Jack. A fever is good for engraftment, just as long as it doen't get too high. He is just so thrilled when he sees Noah. I know he would love to chase him and follow Noah everywhere he goes. Today we had a volunteer come and sit with Jack for about 3 hours while we took Noah to a really cool Museum. We went on a train ride and played and laughed and got rained on. We went into the bathrooms and used the hand dryers to dry our hair. You can imagine what our hair looked like! BOING! Curls everywhere. It is so damp and humid here, there is no use for my flat iron. David and Noah went back to the apt. to take a nap and get refueled. Noah and I are going out to eat tonight and then I will stay with Jack. I don't think David and Jack got much sleep last night. The nurse was a little loud and turns on the lights all of the time. I am really enjoying Noah. He is so full of energy and ask a million questions. Please pray for Jacks cells to grow and a good nights sleep tonight. Love Gina Friday, June 6, 2003 2:53 PM CDT Greetings from the South. Noah and I had a great flight. He was very good. I spent the night with Jack last night. He woke up about every couple of hours and on the hours when he didn't wake up, the nurses would wake him up. A hospital is not a place to rest. The Doctors just came to see him. They said they wish they could Zerox him because he is doing so well. They said he is such a pleasure. He is alert, happy and active. We went for a walk in the hall and played some hoops. He is feeling really good. He does have fever periodically but he is supposed to. All of his labs were perfect. We are so thankful that it appears he is being spared the worst side effects of the chemo. He has no mouth sores, nausea or diaper rash. He is losing his hair but hey, bald is beautiful. He really does look cute once you get used to it. We have a long way to go but things are going well. Thank you all so much for your prayers and all of your help. Gina and Noah have been to the Duke Gardens today and they have been riding the little train that runs between the Duke hospitals. Tomorrow we have a "rock-a-baby" volunteer coming. We plan to take Noah to a "hands-on" museum they have here. Jack was so excited to see Noah. He just started squealing when he saw him. Gina is going to take Noah to Cracker Barrel tonight and fill him up with biscuits and jelly (one of Noah's favorites). Thursday, June 5, 2003 10:59 AM CDT Yipeeeee!!! David and Noah arrive today, (9:30 p.m.). I can't wait. Jack is doing so good. He is soooooo energetic today. He is feeling so good that they are taking him off of morphine because he does not need it. Im so happy. He is takling non-stop, clapping, smiling and throwing his toys. God is so good and has heard my our prayers. I know that every day will not be like this, but the doctors are so pleased with everything. He had mucositis for about 2 days and has not had it in about 4 days now, soooooo hopefully its GONE! Today we are at day +6!! His pillow was full of 1/2" inch blonde hairs this morning, sniff sniff. It will be a matter of days before he is bald. Thats ok. He didn't get hair until about 9 months anyway, and I love his big bald head, hee hee. Im still amazed at how many people are visiting Jacks web page, THANK YOU!!! Please pray for Jacks good days ahead and sunny weather for me and Noah!!! By the way, it stopped raining and is beautiful today in good ole N.C. Gina Wednesday, June 4, 2003 7:47 AM CDT Good morning! Today is +5, yeah!!! Jack is doing much much better. We found out the reason he had been feeling so restless and yucky the last couple of days. His hemogloban (blood) was very very low. We had an error in lab reports. It showed his levels high when actually he was low. So once they gave him a blood transfusion it was like my little Jack was back. It was amazing, he was laughing and clapping. I am going to watch that a little closer. He was a good cuddler through it all. Last night we got a good night sleep. He is still running a fever off and on of about 101. I hope that means he is engrafting and growing cells. Rhonda left yesterday. She took the truck to the airport so David and Noah will have it tomorrow night when they get in. I didn't want to leave Jack 2 times by going to the airport. Anyway I didn't give the "best" directions for her, tee hee, so she got a close up view of downtown Durham. She did make her flight though, barely. Sorry Rhonda!! It was great to have her here to help out. She is the best!! It is raining again. I hope it clears up because I have lots of plans for Noah. Happy Birthday to Jacks buddy Matthew, who turns one! Matthew is another Hurlers baby on the unit. (only 2). We have known Matthew and his parents Eric and Peggy Sackett for 6 weeks now from the clinic. Matthew is a twin, of which his brother did not inherit Hurlers. He was transplanted one week ahead of Jack. Please keep him in your prayers, he is a cutey. I want to tell a special thanks to Noahs grandmas for all of there running around and keeping Noah. He will keep you busy. THANKS!! Grow cells grow!!!!!! Gina Monday, June 2, 2003 4:07 PM CDT Hello!!!!!!! This is Aunt Rhonda. I am doing the journal entry for today. Jack is doing good considering everything he is going through. However, he tires very easily and isn't laughing very much. He still loves to watch Sesame Street though. I stayed with him this afternoon while Gina went to the apartment and slept. He was pretty restless and didn't really sleep. He laid in my arms and watched TV most of the afternoon. I also spent a lot of time picking up toys that he would throw. Anything that touches the floor has to be wiped with disinfectant. Anytime I touch anything or go out of the room I have to use antibacterial soap. It's hard to get used to doing that. The doctor came in and checked Jack and said that he was doing great and everything is the way it is supposed to be. His vitals are good also. He looks really good with his new hair cut. He is going to be put on a morphine drip since he is having some pain from internal sores from the chemo. The staff here is great! Everyone is very caring. Well, I have to go disinfect some toys. I go home tomorrow and David and Noah will be here in a couple of days. Bye Sunday, June 1, 2003 5:16 PM CDT Hello! Today is day +2!!! Jack is doing really good. He is keeping the nurses entertained. I picked up Rhonda yesterday at the airport. I think she is quite taken with our living arrangements because she really hasn't commented on it much. Jack was so excited to see her. Today we got to get out for lunch today. This is the first day is hasn't rained in 2 weeks, so we sat outside and enjoyed the sun and 70's weather. Rhonda watched Jack for me so I could get out and run around a little. When I got back, sniff sniff, they shaved off Jack's hair. I just could not stand to see if fall out. He has peach fuzz now and is so adorable looking. On a sad note, a one yr Greek baby died Friday from complications of Sanfillipo Syndrome. The family also have a 3 yr old who is getting his second transplant on Tuesday. They have been here since January and do not speak english. Please keep them in your prayers. Well Rhonda is back with Chinese food, so I better eat before Jack wakes up. I will update tomorrow!! love Gina Friday, May 30, 2003 3:28 PM CDT Halleluha!!!! (spelling?) Jack's transplant has finally happened. He received about 2 oz. of stem cells from frozen unbilical cord blood. The doctors said it was an excellent match with a very strong cell count. So now all I can say is..... grow cells grow!! Here is how the process went. Reinfusion of stem cells is a simple and painless procedure that took place in Jack's room. The stem cells were thawed and delivered in a bag similar to that of other blood products. The stem cells were infused through Jack;s central line, (much like an I.V. drip, but much faster). Jack was placed on a cardiac monitor and blood pressure cup during and after (every 5 minutes) the transfusion. It causes a funny taste in Jack's mouth (pew), much like that of creme corn. The whole room smells like that and will for about 24 hours. Transplant day is a time of celebration! We got our picture taken and a certificate. The doctor told Jack "Happy Birthday, welcome to your new life". Jack is now 0- blood type, where as before the transplant he was A+. Isn't that a mind boggler. It did not change his DNA. I held Jack in my arms the whole time and he just layed there, not moving, but just observing everything. He was SO good. David called right as they were hooking him up, and he stayed on the phone the entire time so he could be part of the experience. We cried and laughed. This is the day we have been waiting for. Its all in Gods hands and we pray for new cell growth. I will get new pictures up as soon as I can. This has been a GREAT day. We both were showered and cleaned up by 8:00 this morning for the big day. They were supposed to have done the infusion by 11:00 but of course we were delayed but thats ok. We still looked good, tee hee. Ok, I have GOT to find an air freshner. Jack is asleep but breathing through his mouth. God has made him so strong and resilient, it just amazes me. He keeps me strong. Rhonda flies in tomorrow, YEAH! I will talk to you then! Gina Thursday, May 29, 2003 10:13 AM CDT Hi there!! Jack had a great night. No fever. Slept very well. I slept well. The bed and I are getting along much better. Now if I could get a pillow that wasn't plastic. Everytime i move I make a crinkling sound. Oh well, I have that to look forward to when we go home. Jack got his nose NG tube out today. He was soooo excited. To celebrate we went on a wagon ride. He is tiring easily. After about 10 minutes he was done. But at least he smiled and made truck noises the whole time. brrmm brrmm. No more chemo today!!!!! He gets 10 hours of ATG today, but the dr said since he did so good last night, that he should do good tonight also. On a sad note, a leukemia patient passed away last night. Pray for his family. There are only 16 rooms on this ward, so we all kind of get to know each other. There were 3 discharges yesterday, Yeah! So this weekend we should meet some new friends. Tomorrow is transplant day!! Jacks white cell count is 0.9 today. He pretty much is wiped out. Thats good though. We want him to be 0 so he can start growing new cells. Pray for a good evening and a successful transplant. Love Gina Wednesday, May 28, 2003 11:42 AM CDT Hello. Yawn. Jack had 105 fever but he slept through it. They gave him Benadryl and Tylenol and it knocked him out. Unfortunatly I was awake. They checked his temp and blood pressure every 15 minutes. He must have been really relaxed because his pressure went down to 60/20. His appetite is gone and energy level is really mellow. He still smiles and says hi and bye to everyone who comes in. He is really handling things so well. Im so proud of him. I left my bed down today so I hope to nap with him. Jack is getting his LAST dose of chemo. YEAH. He gets more of ATG for 10 hours tonight. This is the drug that gives his the fever and really knocks him off his feet. Tomorrow is what they call a day of rest (except he still gets ATG) and then friday is Transplant Day!!! His EKG was good today. David went home yesterday and I guess Noah was up waiting for him at midnight. Grandma said she could hear him in bed singing London Bridges. I guess they ate ice cream in bed until late. Hopefully, (hint hint, nudge nudge) David will update the photos on the website. We have some really great ones of Jack here at the hopsital. Hopefully we will go on some wagon rides today before they hook Jack up to ATG. He is a trooper! Please continue with the prayers! Adios! ciao! Gina Tuesday, May 27, 2003 10:42 AM CDT Dear Family and Friends: Gina is letting me update today. I slept in Jack's room last night. He slept really well except for the fact that the nurses come in and mess with him every couple of hours. I slept well also but it is certainly not as restful as sleeping in your own bed. Jack is doing well. They will be doing an Echo (sp?) on his heart this afternoon. One of the rare but possible side effects from the chemo is heart damage. His heart sounds good but they are very cautious to check everything. He also starts three days of ATG in prep for transplant. Most children run a high fever (103 - 105) and have hives while on ATG. They also give him Benadryl, Tylenol and antibiotics to counteract the side effects. The next few days will likely be tough. He will probably be sleeping a lot and feeling bad. Jack made a big card for me to take back to Noah when I leave late this afternoon. It is hard for me to leave but I feel better knowing that Gina and Jack are surrounded by friendly and caring nurses. There are families here from Greece, other parts of Europe and Hawaii. We are not the only people dealing with separation. Aunt Rhonda comes on Saturday and Noah and I come back on June 5th. We are still on track for transplant on Friday. Please pray for things to continue to go well. Also please pray for strength for Gina. The routine here is exhausting to say the least. Monday, May 26, 2003 10:20 AM CDT Hello! David stayed with Jack last night and they both slept very well. I slept like a rock for 10 hours. I don't even think I moved last night. Jack has taken to his face mask very very well. We go on lots of wagon rides and truck rides in the hall way. Its quite a balancing act really. We are pushing the wagon, pulling his I.V. cart, making sure the mask stays on. And you know me, Im a fast driver, and the faster we go the more Jack laughs. He got another EKG this morning and it is normal. Right now he is sleeping and getting his chemo at the same time. His white cell count showed a decrease today, so, as sad as that makes me, the chemo is working. By day +1 or +2 his count will be 0. Jack is happy and smilley. I just can't help but look at him and get emotional, knowing what is going on in his little body. The doctor said everything is going as good as it can. His appetited is diminishing as well as his energy level. David and I got in trouble yesterday from his nurse. Apparently we aren't supposed to be eating in his room. We popped popcorn. Nice smell. Oh well, now we know. Last night David and I walked to the Duke Gardens while Jack took a nap. Right now David is there jogging and getting some fresh air. As for me, I just got my hair cut and styled. They have someone here once a month called "salon day". Now if they could just find someone to do manicures and pedicures. HA! We are going to have a great day today. Jack has new crayons and paper. We are going to make Noah a card. Thanks for the prayers, they are working!! love gina Sunday, May 25, 2003 10:29 AM CDT Good Morning! Well it's almost noon here and its STILL raining. David and I did get to go out for a nice long walk last night. It did clear off for a while. It has been great having him here, I've missed him so much. Jack has had 16 chemo treatments in four days. He is doing great. His appetite is decreasing but he is feeling well. He had an EKG this morning and it came back normal. YEAH! Toaday he starts another form of chemo which he gets once a day for an hour. Today is -5. Everyday we count down with day 0 being transplant day, which is friday. Then we start counting plus days. I can't wait for the +'s to start. We slept well last night. I am going to try and talk David into staying tonight. He looks at my "bed" and just shakes his head. He is 6'3, not a problem. tee hee. I think my appetite is coming back now, im eating fritos and diet coke for breakfast, yum. We talked to Noah this morning at my mom and dads. He is really intrigued with this cemetary (Memorial Day) thing. A million questions my mom said. They had a family gathering yesterday with my moms family and today they visit my dads side. Hello to all, wish I could be there. Well its Jacks bath time so I better get David his supplies, Ha! Just kidding, I better not overload him, he may not come back. Yesterday afternoon I went to the apt. for a nap and then I was going to Wal-mart. I was only going to be gone for a couple of hours. I slept for 5 hours!!! I guess I needed it. David thought I was driving back to Missouri. Anyway, I didn't get to Wal-mart. I think I will stop trying, especially after my "lost wallet" episode. Keep praying for good results and mild side effects. Love Gina This is David, Just wanted to say Hello. I have an increased respect for what Gina is doing. She went out for a few hours yesterday and I was so glad to see her when she got back. There is constantly something that needs to be done and Jack doesn't really get to nap here. We keep reminding ourselves how thankful we are that this treatment is available. It is very difficult but we view it as a blessing. I will never again forget to thank the Lord for every "normal" day I get to experience. Thank you all for your continued support and prayers. Things are going well here. It is just a long process. Love David. p.s. Gini, thanks so much for letting us use your laptop. Saturday, May 24, 2003 9:42 AM CDT Dear Friends and Family: Gina and I are both going to update today. I am so glad I am here. I have missed Gina so much. I can't describe the feelings I had when she met me at the airport. A traffic cop had to run us off because apparently we were hugging in no stopping zone. I was scared to see Jack but it was a relief because he is doing so good. He was asleep last night when I got in but I got to see him. This morning he reached for me and said DaDa. We made one mistake, as he was going down for his nap, I opened the door and he saw a wagon go by. He was screaming for a ride. Gina said last night he wore his mask and rode for about 30 minutes. The nurses were amazed that he took to the mask so quickly. He seems to understand that if I want out of the room, I have to wear the mask. We did his mouth care routine this morning and he just opened up his mouth like a little bird waiting for a worm. He is being so good. Gina just commented that she is so glad we are here. There are people from all over the world here for transplants. HI!! This is Gina. YIPEE! YAHOO! Im so happy today that David is here. I guess we will be going on lots of buggy rides today. Jack slept good last night and had a bath and was sitting in his hich chair when David walked in. He just squeeled. Well Im going to go nab David and catch up on stuff. I might even go to the apt for a nap. It would be nice to take a shower by myself without jack pulling back the curtain and playing peek a boo with me or throwing all of his toys in the tub. Bye!! PS... Jack got a blood transfusion last night, just because of all of the blood they have been drawing for his labs. He took it like a pro (ok, he was asleep and didn't know) Gina Friday, May 23, 2003 10:03 AM CDT Good Morning! Jack is sleeping right now after watching and singing with Elmo all morning. He didn't sleep to good last night, he was really restless. The Dr. increased his anti-seizure meds and he said that might cause him to be restless. He was right. We did sleep straight through from 4-8. I talked to David this morning and he is packing his bag and i will pick him up around midnight, YEAH! Jack and I don't have alot planned for today. We thought we would stay indoors since its still raining, HA! The nurses fight over who gets to care for Jack. He is really pleasant and happy and plays peek-a-boo with them. We are going to work him wearing a mask today so we can go into the hallway and go for a wagon ride. Have a great Memorial Weekend. Hey Mizzou controller, make me proud and have fun ( you know Im the PMC) ask RS or QR, they know what it means. Bye! Thursday, May 22, 2003 10:08 AM CDT Good morning!!!! Jack had a great night last night. He and i slept about 10 hours. They actually had to wake me and Jack at 4:00 to give him his next chemo treatment! He is taking it by mouth really good. I wrote yesterday that he gets chemo every 8 hours, but it's actually every 6 hours at 10 and 4 morning and night. Today they increased his dosage, yuck. We are finally getting somewhat of a routine. He throws a toy, I run and get it, wipe it off, and give it back to him. He thinks its pretty funny. I won't need to visit the gym for a couple of days, ha! It is hard to remember to wipe everything off before i give it to him. Even if I scratch my nose or touch my hair (frazzeled), I have to wash my hands. Very important. Today is a good day so far. My spirits are good, everyone is coming by to say hi or drop something off, like a high chair finally, but I feel in charge again and settled. Jacks appetite is not as big because of the meds but he still wants his Honey Comb. Im running out of suckers, (dum-dums) hint hint to Aunt Rhonda, tee hee. Today is Noah's last day of pre-school and they are going on a picnic. Hi David, can't wait to see you tomorrow! Now which airline is it again? Between you and Rhonda, I can never remember. I will just circle the airport until you see me! Hey SGF ATCT, no delay tomorrow night! bye Gina Wednesday, May 21, 2003 3:25 PM CDT Hello again. Jack is doing really good. They did not have to put the tube down his nose as long as he takes the chemo by mouth. So far so good. He takes it every 8 hours. We each got about 3 hours of sleep last night. Just as he goes to sleep its time for more meds or blood pressure or something. Me and my cot were turned upside down by morning. I think I scared the nurse, Ha! I will get used to it, I actually layed there and cried and then started laughing at how silly I looked with my head in a cabinet, (where the bed folds into). Pizza Hut delivered for all the families today for lunch. yeah! Right now Jack is sitting in his chair and singing with Elmo (our 5th time today). Everyone has stopped by today to see Jack and the contageous smile he has. He is so uplifting and keeps me smiling. Our address and room number is on the home page and our personal phone number is (919) 681-5214. Thanks Gini and Jeff Briggs for the laptop!!!!! You are so generous to let me borrow it. It keeps me connected to the real world. It is supposed to rain 5 inches today, good day to stay in, huh. OK, bye for now, Jack says a big HI. He really is doing good and is so brave and calm. Thank you God. Gina. Tuesday, May 20, 2003 8:29 PM CDT Well, we are here. I am sitting in my pull-down bed and Jack is in his bed. I can see the IV lines dangling, I think he is trying to unhook himself and make a quick escape. Everything has gone fine. Im alittle overwhelmed with everything right now. They have given me so much information and instructions. Jack has been given anti-seizure medicine and many more I'm not even sure of. I asked how long he will have to be hooked up, because I was having to follow him around everywhere he went, and they said "until he goes home". Sooooooooo, I am going to be busy busy busy. He already tripped over his IV cart and took a head dive onto the hard floor (BIG bump). I think it hurt me much more than it did him. Im not sure who cried the hardest. This is going to be really hard but I have Jack and Jack has me. I don't think I have ever seen him as happy and feeling as good as he is now. He is so much fun and smiles constantly. This morning I took Rhonda and Noah to the airport and got them on there way. It was so hard to say good-bye. Jack has pictures of Noah everywhere in his room. He is so brave and tough. The good thing about this is he will not remember any of it. He walks to the door and says "bye-bye". I tell him, no baby, we can't leave this hallway for a very long time. Tonight I think he knew I was feeling a little blue and he put my face in his hands and just hugged me for the longest time. He is such an angel. Well, this is one day down, and one day closer to going home. Im so happy this day has finally come. Jack gets his first chemo an 4:oo am. They are going to give it to him by mouth and see if he will keep it down, if not then they will put the tube down his nose. Thanks for the prayers. Love gina
Monday, May 19, 2003 4:03 PM CDT Great news today! Jack is to show up at the 5200 unit tomorrow, the pediatric bone marrow and stem cell unit. I am so ready to get the ball rolling. We met with the nurse coordinator today to sign the consent forms and to go over all the meds that Jack will be taking. Tomorrow they will put a tube down his nose, which will actually carry the chemo for the first four days. They will administer this starting at 4:00a.m. weds. and everymorning thereafter for 8 days. He will also be getting alot of meds to offset the side effects and seizures that could happen. It is very important to sanitize everything that we take to the unit. I have to wash our clothes 3 times, wrap in plastic and then put in plastic storage containers. His toys have to be wiped with an antibacterial cleaner and bagged also. There is alot of preparation but I will be ready. Rhonda and Noah leave tomorrow morning for home. I will have to have them at the airport by 7 a.m. It will be sad to see them leave but Jack and I have alot ahead of us to keep us busy. David will be here on Friday night, I can't wait! Today Noah and I spent alot of time together. We went to a really great museum and went on a train ride. We had such a good time and laughed at everything. Things are really starting now and will get pretty scarry for us at times, so please continue the prayers for mild side effects and fast healing. David and I have given God full control and authority over Jack and we pray for strengh and understanding. All things through him. Gina Sunday, May 18, 2003 8:32 PM CDT Hello! Wow what a busy weekend we have had. Jack and Noah have played (and talked) non stop. They are really having a good time. Jack follows Noah everywhere he goes. Rhonda has helped me SO much. She has really had her workout chasing after them, they really keep us hopping. She is so funny, today she was going to throw away the ice from her cup into the sink, and instead threw it all over the kitchen counter, she put both earrings in one ear (we didn't notice until the end of the day), and now I think she is beginning to talk to herself. Ha! We have laughed alot. It was great having Sam and Becky here too! I drove them all over the university and the Durham area, (all 6 of us in the explorer) we ordered pizza and hung out in the apt., and ended the day at Ben and Jerry's for icecream. It was fun. David has free minutes on his cell phone, so he calls and gets updates on what is going on alot. Today we went to the mall and got pictures taken at the Picture People and then cooked dinner in. It is STILL raining here and is cool outside. Jack is still doing great and looking forward to our phone call Monday morning from Dr. Kertburg about his admission on Tuesday. Keep your fingers crossed and say a prayer. Well Im exhausted and I need to get Noah BACK in bed. Rhonda bought him a cool frog night light and he is mesmerized by it. Love Gina Saturday, May 17, 2003 9:21 AM CDT YAHOO! Noah and Aunt Rhonda are here! We picked them up at the airport last night and 10:30. Noah was so excited and was talking non stop. Jack squealed with delight when he saw Noah. It was after midnight before I could get them to bed. Sam and Becky missed their flight in Memphis due to weather delays, so they will not get here until 1:00. Jacks clinic visits are going good. No problems, he is getting use to everything now and will let them change bandages without a fight. It is rainy here today but that won't stop us from having a "super-duper" day, as Noah says. Im so happy but it still isn't the same without David. I hope you enjoy your weekend David and enjoy the quiet time, we miss you. Have a great weekend everyone, and pray for Jacks admission on monday or tuesday. Love gina Thursday, May 15, 2003 7:29 AM CDT Good morning! Jack's visit to the clinic yesterday went ok. He has some redness and swelling around his central lines. He has 2. They are big lines so i guess it just takes time to heal. If its not better today they will prescribe an atibiotic ointment for it. I just want it to heal before they start the chemo. He is so good and brave everytime they flush his lines and change all of the bandages. His shunt incisions are healing very well on his head and his stomach. He has 6 bandages in all. Some will come off today. Well last night I made a good impression to my neighbors. We were on our way to wal-mart, (how exciting) and I couln't find my wallet. Long story short, I threw it away with the garbage, which was in the big cannister by the parking area. Yes, i had to dig through it to find my garbage and then dig through that bag, all the while Jack is giggling for some reason. I did find it, thank goodness, but not without at least 90% of my neighbors seeing me and walking away very fast. I smiled, dusted off my hands and went to wally world with the best of them. Jack was still laughing, I think he had something to do with it being in the trash. Today we meet with the doctors who performed his surgury last week, and back to clinic again. Have a good day and watch what goes in your trash can! gina Wednesday, May 14, 2003 3:37 PM CDT This is David. I just wanted to do a brief entry. First of all, I just wanted to thank everyone for their prayer and their support. Gina and I couldn't get through this without the help of friends or family. We are so appreciative of all of the help that has been given. At this point, we are just waiting for a bed. Please pray that several of the children that are close to being discharged from the ward will be able to go home. I can't imagine how anxious those families must be to leave and we are very anxious to be admitted. Gina called me earlier and told me that the nurse that saw Jack today was a little concerned that his incisions around his central line looked pink. Please pray that he is not getting an infection. Again, I just felt compelled to say thank you for all you have done. This is a very difficult time for us but we are trying to keep our thoughts focused on how thankful we are that there is a treatment for Jack. Gina is feeling very alone right now but she is being very strong. I know it is hard for her to be in a strange town and a strange apartment with no one else around. I am so proud of her. I am so thankful that she is going to have plenty of company this weekend. David
Tuesday, May 13, 2003 9:17 PM CDT Hi again. This is my second entry today but I just had to comment on and thank every one for checking in on the website. Over 7000 hits. Unbelievable! This is overwhelming to David and I. Please continue to leave journal entries, I look forward to reading them every single day. They are so uplifting and I feel like they connect me to you when I am so far away. THANK YOU!!!!!!!!! Gina Tuesday, May 13, 2003 11:12 AM CDT Hello! The weather here is gorgeous today. Jack and I take alot of walks and alot of naps. The days are getting longer it seems. I really hope he gets admitted soon, because this waiting and sitting in an empty apartment is getting old. I'm beginning to talk to myself,HA! I do have friday to look forward to. Noah and Rhonda fly in at 10:30 pm, and Sam and Becky arrive at midnight. Yeah! I have company! I can't wait to see Noah. Well everything else is going good. Gotta go, I have Poo books to read and blocks to play with. Gina and Jack ps. It will be nice to see everyone else too! Monday, May 12, 2003 11:50 AM CDT Hello! I hope everyone had a nice Mothers Day! Jack and I had a great day. After we went to clinic we ate breakfast with Aunt Rhonda and then took her to the airport. It was great having her here, we had alot of fun. Jack and I went out for a Mothers Day dinner. We laughed and giggled the whole time. He is so much fun right now and is feeling so good since he got the shunt. We are still praying that Sunday there will be an available room for Jack. Right now they are full but are anticipating some vacancies. I forgot to give everyone our new address: 701 White Pine Dr Durham, NC 27705 (919) 383-8043 cell(417)880-8200. Good day to all and spend some quality time with your kids today. Hi David and Noah, I love you and miss you. gina Saturday, May 10, 2003 1:01 PM CDT Hi everyone! It has been great having Rhonda here. We have laughed alot and enjoyed our time. Jack goes daily to the childrens clinic to have his lines flushed and his bandages changed. Everything looks good and is healing well. We had his picture taken yesterday in a little fire truck, his favorite. Having Rhonda here gives me a chance to walk and work out. This is a great stress reliever for me, also with my daily yoga workouts. Happy Mothers Day to all! Thanks for the prayers and thoughts, love gina. Thursday, May 8, 2003 1:06 PM CDT Hello! I just wanted to let everyone know that Jack is doing awesome. He slept for 10 hours last night and didn't make a peep. (so did I). He is so brave and such a trooper for everything that he has gone thru already. He just keeps smiling. I just picked up my sister Rhonda at the airport. Im so so glad that she is here. We are going to cook a good dinner in the apt. tonight and stay in, (ok, so she will be doing the cooking). This will be the first meal in 3 weeks that i haven't eaten out! We go to the clinic everyday for a check-up and to have his central line flushed. Other than that, we are trying to keep him germ free and just waiting to be admitted. Hello David and Noah! I love you and miss you terribly. Gina Wednesday, May 7, 2003 8:45 PM CDT Dear Friends and Family: Tuesday, May 6, 2003 2:02 PM CDT Well it has been quite a day, starting at 5:00 a.m. Jack got his internal shunt and central line put in. Both procedures went very well with no complications. The doctor that did the shunt said that Jack had a lot of pressure in his head. He should feel much better. The central line is placed in Jack's chest. The doctors and nurses will use these lines to draw any blood and to administer the chemotherapy and medications. They will stay in until Jack can come home to Missouri. Jack will spend the night at the hospital and will likely be discharged tomorrow. We are still on target for admission on the 18th. When we toured the transplant unit a couple of weeks ago, one of the Hurler patients was in ICU and not doing well at all. We found out today that he is now doing great and is being discharged to an apartment here in Durham. We are so happy for him and his family. This also brought home to us that we will likely have many up and down days. Monday, May 5, 2003 2:33 PM CDT Hello! I have enjoyed Noah soooo much these last couple of days! I almost forgot how much energy he has and how much he talks. He has been really good and loves his "summer vacation" home. Jack was absolutely thrilled when he saw Noah, and he follows him everywhere he goes. I saw an airplane fly overhead today and it kind of put things back in reality for me. I miss Springfield and I just wanted to say hi to my friends at work, SGF ATCT, HI! Well, Jack goes in at 6:00 a.m. tomorrow for his shunt and central line surgury. He will be inpatient for a couple of days. David and Noah leave early weds morn and then aunt Rhonda comes again on Thurs, YEAH! It was great having her here last week. Now maybe we can actually stay up and talk when Jack goes to bed. In the hotel, when Jack goes to bed (at 8:30), we ALL go to bed. Until tomorrow! Pray for a successful surgery, Gina. Sunday, May 4, 2003 2:04 PM CDT Thank you all so much for your messages. Gina and I get a great deal of strength from the support and prayer. It is great to be here together but also difficult. Setting up the apartment is a relief from being in a hotel, but a reminder of the long trail ahead. We are having a good time together but setting up a household in a strange town is odd. I wish I was bringing Jack and Gina home as opposed to setting things up for them to stay. As of right now, the plan is for Jack to get his shunt in on Tuesday. They will also put in his central line. The plan is to admit him to actually begin the chemo on the 18th, 19th or 20th. Of course we are pushing for the 18th. The Pediatric Stem Cell Unit had a fund raiser on Saturday. It was nice to see everyone outside of the clinic setting. The people here are wonderful. We are starting to learn our way around Durham. We have only been lost once this weekend. I just wanted to give you a short update and again say thank you. God Bless. David Friday, May 2, 2003 12:27 AM CDT Oh my gosh, i'm so excited! Jack and I are leaving for the airport to pickup David and Noah! It has been 13 days since I have seen Noah. My emotions are going crazy. Jack had another spinal tap this morning because his pressure is so high. He was getting sick alot yesterday and holding his head and I knew the pressure was back. We move into the apt. this weekend and have nothing else planned but fun stuff with the boys. Thanks for the journal entries, they keep me going! gina ps. Jack has carried David and Noahs picture all morning, I know he is excited too! Thursday, May 1, 2003 10:09 PM CDT I just got of the phone with Gina. She had neglected to tell me a piece of good news. They confirmed a donor for Jack today. It is umbilical cord stem cells from a baby boy. It is a 5 of 6 match (they consider 4 of 6 to be good). The match also had an extremely high enzyme level. She said they usually find levels in the 50's or 60's and this match had levels in the low 80's. The doctor indicated that they normally prefer to match boys with boys however the only disadvantage is that after the transplant it takes longer to tell if the cells that are growing are the newly transplanted cells or if it is Jack's cells coming back. The goal is to have Jack's cells completely wiped out and to have the new cells take over. Generally the new cells do take over so that shouldn't be a problem. I wanted to express how blessed we feel to have such wonderful family and friends. Even if we don't get the result that we want, God has made it clear to us that we have been blessed. David Thursday, May 1, 2003 4:14 PM CDT Dear Friends and Family: Gina asked me to do the update because she can't get to a computer. We were very bummed out by the fact that Jack needs the shunt. I just got off the phone with a member of Jack's medical team and she assured me that this is not such a bad thing. It does not mean that Jack's prognosis is worse or that the disorder has progressed more than they thought. She said that it is just a fact that some of these kids have pressure issues. She said sometimes they don't develop the pressure until the transplant process has begun. It is much more serious to have to do surgery during the transplant process than to do it before. They are going to place the shunt on Tuesday and install his central line at the same time. This is good because he only has to go under anesthesia one time. They then want to give him ten days to recover. Therefore, he will not be admitted to begin the transplant process until the 18th or 19th. This delay is frustrating but one of the very first things they told us is to not get tied to a schedule. Each child presents with a different set of circumstances and every procedure is dependent upon a doctor's schedule. The good news is that all of Jacks other tests have gone well. The child psycologist evaluated his development and said that he scored very high. His hearing was also tested and is very good. We have decided to not be frustrated by the delay because it is all out of our hands. We are trusting in God and the doctors to do what is right for Jack. Noah and I will be leaving tomorrow to go to Durham and coming back home on the 7th. Jack should have his surgery on the sixth so once again, Gina will be having to deal with a lot by herself. Please continue to pray for Jack and our family - - especially Gina. She is being so strong. Wednesday, April 30, 2003 8:08 AM CDT Good morning! Well yesterday didn't work out like I wanted. Jacks pressure in his brain from the spinal tap was extremely high. They will definelty have to put in a shunt to relieve his pressure. It will run from his head through the brain, down his neck and into his stomach. Yuck! God is really making me strong, because normally I would be passing out right now. They say its not a big deal to have this and it will be easy on Jack. Aunt Rhonda flew in yesterday!!! YEAH!!! We bought stuff for the apartment and went out to eat. Today we meet with the child psychologist, ear nose and throat specialist and then with Jacks Dr Kertzberg. Another full day but at least Rhonda will be with us. We are going to the Duke Gardens for a picnic tonight and to take pictures. This is 55 acres of beautiful landscape flowers and waterfalls. Today is Noahs 4th birthday! Happy Birthday Noah! I can't wait to see him and David on Friday. Its been 12 days since i've seen Noah. Thank you so much for the encouraging notes and your prayers. Gina Monday, April 28, 2003 2:34 PM CDT I thought we were going to have nothing to do today but we have been busy. We went for a walk in the nearby Duke Gardens. The Gardens are beautiful. June the Nurse Coordinator has called three times to add additional appointments and tests, so things are filling up. I got a wonderful suprise, Aunt Rhonda got on line and found some good last minute tickets to Raliegh-Durham. She is flying in tomorrow morning and will stay over night. That news really lifted my spirits. Our biggest concern right now is Jack's spinal tap. It is scheduled for 9:30 tomorrow morning (Eastern Time). We are praying that Jack will not need a shunt. We trust the doctors but we really don't want Jack to have to go through the shunting procedure. Please pray that a shunt will not be necessary. Sunday, April 27, 2003 9:24 PM CDT Dads Perspective: Well I am back home. Leaving Gina and Jack at the airport this morning was very difficult. Gina is being so strong. I am so impressed by her. I know she is torn up but she realizes that we have to take care of things at home also. Noah and I did one of his favorite things tonight. We ate at Sonic and went to the park until sunset. It was bittersweet without Gina and Jack. Thank you all for your messages of support. It is especially encouraging to hear from the parents of children who have had transplants. I guess it is true that if it doesn't kill you, it makes you stronger. I know Gina and I have a new perspective on life and what is important. Jack doesn't have any tests tomorrow but has a spinal tap on Tuesday. Please pray that the results of that test are good. The purpose of the test is to see if he will need to have a shunt placed in his head prior to transplant. Saturday, April 26, 2003 3:24 PM CDT We spent today trying to find an apartment. We had a very hard time deciding whether to rent an apartment or just keep staying in a hotel. We were able to find a nice apartment that is only 2 miles from the hospital. They agreed to break all of their rules for us and gave us a three month lease with an option to extend it monthly. They gave us a really good rate compared to what other things go for here. We know we will be here longer than three months but we didn't want to commit to a six month lease. Many places wanted a one year lease. We thought it was best to go ahead and get an apartment now because anyone who can come down to help will have a free place to stay. Secondly, it will be a more homey place for Gina and Noah to stay when I am in town. There are nice play areas for Noah and the Durham Forest trail system has an access point there. We figured that with what we are spending on hotels, it would be about the same cost. Friday, April 25, 2003 2:37 PM CDT Dear Friends and Family: We finally found a library here at the hospital that will give us access to the web. After Jack is admitted we will have internet in his room. We just got to read all of the messages you have sent. They mean the world to us. We are so thankful that there is a treatment for Jack's disorder but when we see what he will go through, it is very scarey. For some reason we thought the nurses and doctors would do everything while we would be observers. That is not the case. Gina will be required to be in the room with Jack as a caregiver twenty-four hours per day. She will get some short breaks from our "best buddy" When I am here, I will give Gina a break as much as I can. I will want her to spend as much time with Noah as possible when we are here. In addition to your prayers for Jack, I ask that you pray that God will give Gina strength and health. This is going to be very tough but we have faith. Your prayers are making a huge difference for us. We have been told that they have found excellent cord blood matches for Jack. Until next time. Love David Friday, April 25, 2003 8:09 AM CDT Yesterday was another full day for us and Jack. We met with a child psychologist who thought Jack was right on track and wanted to take him home. He was sedated for an hour long echocardiogram and EKG. The cardiologist said his heart was in very good condition, just a little thickening of the valve, which is consistend with Hurler Syndrome. Wednesday, April 23, 2003 3:26 PM CDT Wow, we have had so many doctors appointments already! Jack has had his MRI, 15 blood tests, chest x-ray, long capacity test (where they make him cry), nasal cavity test, eye exam, medical history, physical exams, plus meeting with a lot of different people in their role of Jack's treatment. All tests have come back normal except for the eye exam, which he has corneal clouding. We took a tour yesterday of the pediatric transplant unit. This was completely overwhelming! They have their own air filtration system and private hallway in the hospitals. There are 16 rooms on the ward with children like Jack or with cancer or leukemia. The rooms are very small with a TV/VCR and a small bed for me, which resembles a cot. I am required to stay with Jack 24 hrs. a day. I will be assigned a volunteer buddy who will come 4 hrs. a week to sit with Jack so I can go see some daylight. Monday, April 21, 2003 10:29 AM CDT We finally arrived at Duke! Jack was so good all day and loved flying. We found our explorer at the airport and loaded it to max capacity. We found our hotel and checked in. We then drove around and familiarized ourselves with the area. Duke is REALLY big. We feel like it is a safe area for us to stay in. There are many restaurants to choose from however, we ate at Jack's favorite, KFC. Jack slept great, as well as me and David, and our hotel is across the street from the childrens hospital and clinics. We are off to our first appt, MRI. Until later, please continue to pray for Jack. Gina Thursday, April 17, 2003 10:37 PM CDT We are just getting ready to leave for Duke Medical Center where Jack will undergo a stem cell transplant. The first couple of weeks will be testing on an outpatient basis. Jack will likely be admitted to begin the actual process on May 6, 2003. We will update this website as we have the opportunity. We are feeling very overwhelmed at this point. The Doctors and staff at Duke have assured us that things will seem less overwhelming once we get there and get settled in we will have a better grasp of what to expect. Please pray for Jack and our family. Please check back for additional updates.
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