Meet Robert and Evan   What is ALD?   Robert's 2001 Bone Marrow Transplant   It Runs in the Family   A Typical Day   A Parent's Perspective   You Are What You Eat   How YOU Can Help   Guestbook & Contact Info   Photo Gallery   Make-A-Wish Foundation®   Updates on Robert and Evan   ALD Resources	Updates on Robert and Evan This page will chronicle Robert's progress during his upcoming bone marrow transplant scheduled for July 20, 2001 and his year long recovery. Thank the Lord, Robert and Evan are doing well. Robert is in an extended transition program for people with disabilities at a facility called the Pinellas Technical Education College (PTEC) and Evan is a senior with many honors courses at Palm Harbor University High School (PHUHS). This is really a big deal for Robert and for me because only a couple of years ago,it would have terrified me to have Robert 14 miles away from me in case of a seizure, or some other type of emergency. He has had to come home only once since school started in August because he fell due to a couple of mini-seizures he calls "twitches", but otherwise, he gets up at 5:30 AM to catch a 6:15 bus, rides it to school, learns throughout the day, then comes home at 1:40 PM. the staff loves his gregarious nature and is very supportive of Robert. It is quite an exhausting day for both boys, because Evan is still up early to catch his 6:25 bus and to spend the entire day on a treaditional school curriculum. We are very blessed that both boys are doing so well and still pray for Robert's complete recovery from the incident that took place 7 years ago, when his arm became partially paralyzed and he had to go on seizure meds, but we KNOW how fortunate we are to have both boys still with us in each of their current capacities. We pray for you all to have a wonderful and Merry Christmas!! In Christ, Kelly, Joe, Robert & Evan Kelly Helenihi - Monday, December 12, 2011 at 15:01:54 (EST) Wow!! What a great half year it's been since I have last given an update and the excuse is the same as it's always been; we've just been busy living a full life with Robert & Evan and running the newly incorporated King & Helenihi/Acropenta business as Joe flies all over the country putting in phone systems for various companies. Robert graduated from high school, as you guys can see from the lovely pictures that our delightful webmasters, Laura & Christian put on the site. That was great, as Robert's grandfather, Sonny King, his Uncle Harris, & Cousins Barry & Melanie all came from out of town to view the ceremonies. Many people came from the Tampa Bay environs, as well, because none of us ever thought we would see this day come ten years ago when Robert underwent his transplant. Now we have to pray and help Robert figure out what he is going to do next with his life, as many opportunities are available for people with disabilitie in this community, thank the Lord. Robert also went to two high scool proms and is out and about just as much as I can drive him these days...more later, as usual, & much love to everyone who prays for us and has to deal with this disease. In Christ, Kelly & Joe Helenihi Kelly Helenihi - Wednesday, August 10, 2011 at 13:03:31 (EDT) Hi everyone, Well, yet again, it has been a busy half a year since our last update and we will be updating with more pictures soon, too. Robert is doing well and is in his SENIOR year in high school, if you can believe that example of how time flies! Evan is a busy junior in high school and is lazily making his way through said institution. We are blessed to have their Dad Joe, busily doing contract work with his company Acropenta, formed after he was laid off from Avaya in January of '09. The work is steady but no one wants to hire full time and pay benefits yet; thus, he has neen flying out of town quite a bit, with me being the ferrywoman to Tampa airport on a pretty constant basis. We thank the Lord for the work and are glad when we can have Dad at home for a few days. Keep praying for steady benefits during this healthcare crisis, please. It has been an up and down couple of years and Robert is still dealing with the partial paralysis in his left hand; his attitude is the best in the world, however,and we are praying for gainful employment for him after high school and that he passes a "standard diploma" GED so that more educational doors may be opened up to him. Evan has been getting lots of exercise walking the couple of miles from school to the library on a regular basis and will hopefully start volunteering there for scholarship oportunities. He has been in chorus since 7th grade and has sang with his high school's chorus at Disneyworld for three years in a row now! Robert is actice in the Fellowship of Christian Students and Athletes"(FCSA) club after school and both boys go to many school functions, so we stay pretty busy, praise the Lord! That's about it for now; we are just living with the "new normal" of being part of a small business and are simply taking every day as it comes and doing the best with it that we are able.Robert, when he turned 18, was approved for Social Security benefits back in September but that took the quantification and organization of 17 years of medical records, which was no small feat, for sure. Evan, Joe & I had to find other policies on the private market, so the insurance odyssey has lasted since July, but looks like it is soon to br concluded. Yay!! Every family member will literally have a different insurance policy, though. Any how, more pictures later and thanks to all of you who pray for this disease to be cured and for Robert & Evan to lead healthy, fulfilled, productive lives.We are praying for you also and for everyone who deals witha chronic disease in this world and for their caregivers. In Christ, Kelly Helenihi Kelly Helenihi - Friday, February 18, 2011 at 16:07:59 (EST) Robert got his cells NINE years ago today at 2AM, 7-21-01. What an amazing miracle he remains today!!!!!!! Kelly, Joe, Robert & Evan - Wednesday, July 21, 2010 at 17:20:54 (EDT) Robert went to his High School Prom as a Junior, and will graduate after the next school year. Evan will be a Junior this year. Both boys are enjoying summer vacation. As well, back in Apri, Robert got to fulfill one of his dreams to see both remaining Beatles by getting to go to Miami to see one of the three U.S. shows performed by Paul McCartney. What a wonderful time and how inspiring Sir Paul is at 68 years old! More later and sooner, Kelly & Joe Joe and Kelly - Wednesday, July 21, 2010 at 17:13:21 (EDT) Well, the holidays have come and gone and we are finally getting around to updating the boys' site. Robert and Evan continue to be healthy and happy. Robert contiues to do physical therapy for his left hand, and Evan has grown to be nearly as tall as Dad. Both boys are a big help around the yard and being teenagers are more than eager to help. Robert competed recently in the Special Olympics and won first place in the shot put, and came in third in the 50 meter dash. These results may be enough for him to qualify for the Florida State competition in Orlando, we will have to wait and see. Kelly and the boys went to see Southern Culture on the Skids at Skipper's Smokehouse last weekend and had a blast rocking out to the band. Please continue to pray for the doctors, nurses and families that face living with ALD and for the continued research efforts to cure this disease. May God contiunue to richly bless you. Joe and Kelly - Monday, March 15, 2010 at 13:12:30 (EDT) February? February was the last time I updated everyone on Robert & Evan and how our family is doing since Joe got laid off? Aargh!! Anyway, thank the Lord, the boys are doing fine and our wonderful web gurus at Magicbus.com, Laura & Christian, have put up more pictures of what all the boys are doing and how much fun Robert and a gang of friends/family had on the 8th anniversaty of his getting his bone marrow cells (7-21-09). Please look at them and expect more pretty soon. Summer is over, however, and the boys are back in school, with Evan being in the 10th grade and Robert being in the 11th grade now. School starts at a brutal 7:05 AM here, so the boys are up at 6AM and have to go to bed at around 9PM. They are not happy with that arrangement at all, but blessedly, this is the 2nd year that Robert doesn't have to have Hospital Homebound schooling. Yay!! Dad Joe, in his laid off status, has started a company called, Acropenta, with some of the other laid-off techs and it is slowly picking up business. He works teaching computer skills at night, as well, and the Lord has continued to bless us with medical insurance through the Avaya-Cobra program. Anyhow, I will wait until the boys can be with me so we can better update everyone on the great summer and last half of the year. I guess my updates should be shorter and more frequent.... Mmmm.. Kelly Helenihi - Sunday, September 13, 2009 at 21:54:20 (EDT) Well, we are rocking into the second half of the school year and the boys are doing well after a busy holiday season. We had my brother as a visitor and our friends from Live Oak,FL, Angie, Adam and Katie. It has been a hard year with the boys having to get up soooo early to make it to their first high school class by 7:05 in the morning; it is the first year, however, that Robert is has a full schedule with no hospital homebound and Evan is doing well in a traditional program, even though he is one of the youngest in the 9th grade class! Evan is also enjoying being a member of the robotics team, which takes him into school for long hours some nights. The kid has fortitude, especially for someone that has a whole lot of slacker in him sometimes, too. Robert is maturing nicely and is on an accommodation program which fits his needs nicely and allows him to go into the community for volunteering and job training opportunities. It is a special needs program, but not one for kids who are profoundly disabled, but maybe just a little more compromised than than their peers. Robert shines in it and is making really good grades without a lot of oversight on my part. On the unfortunate side the boys' Dad, Joe, has lost his job with Avaya through layoffs, but unlike many Americans in the same position now, has some severance cushion with which to "put food on his family", as our former president once said. As well, our medical benefits are paid for the next year, which goes without saying, is quite the blessing. With what I've seen the Lord do in our lives, I'm not worried about some little ole job! Blessings to you all. There will be more pictures forthcoming of our adventures and of Evan's robotics exploits. I just wanted to get an update in and let everyone know that we are doing well and the only blip lately, thank the Lord, is Joe's layoff. Also, will you all pray for the O'Toole family? They contacted us through this blessed website and have an eldest son who will be starting the transplant odyssey in Minnesota on February 23rd. It turns out also, that they are the relatives of some very good friends of my Aunt Beth & Uncle Louis, who lost their son Brian, to ALD 14 years ago. Brian is the only reason that we ever even tested Robert and Evan; they are so special to us for this reason, aside from being some of our most fun relatives, too! Oh, I almost forgot, The Myelin Foundation noticed this website and will be linking to it. Yay!!! Maybe this disease will soon be cured and maybe the current stem cell trial on paraplegics will prove to be reparative for those like Robert, who are stable, but have some damage which keeps them from leading totally full lives. More later In Christ, Kelly Kelly - Friday, February 06, 2009 at 15:05:49 (EST) Hi everyone, Well, 6 months is a recorrd for even me, but it was a busy, fun summer and spring and I will send many pictures via my web gurus, so take a lok at those. The boys remain well, with Robert having very little seizure activity this summer. Evan and Robert both are adjusting to the most horrendous high school schedule, which starts at 6AM in the morning!! Every study says that this is the worst schedule for "the circadium rythyms of a teenager", but I figure farm kids had to do it, so the boys can get used to it, as well. Luckily, they have never had a lot of stimulus in their room, like TVs or computers, or even night lights, so when the lights are out, they actually go to sleep. I am not an early bird, however, so it's not like I'm loving it, either. On the upside, both boys go to Palm Harbor University High School, known as one of the best high schools in the country. Robert is being properly accommodated and Evan is on a traditional program and has joined the robotics club. When they get home, I will quiz them about the awesome summer we had and add those experiences to the updates. Both boys are looking forward to homecoming this weekend, but neither has a date. The Lord has worked so many miracles for them, I know that he will let them lead a normal life. More later, Kelly Kelly & Joe - Wednesday, October 01, 2008 at 10:01:33 (EDT) Well, time does fly when you're living life! We have been to Minnesota for a hospital trip since our last update; the visit was early in February. Evan loved the snow and proceeded to commune with it for two days. No one had to force him to go outside and get some activity, which is usually the case here in hot-waether country. We were able to stay with Joe's womderful accommodating third cousin Barry, and his wife, Melanie. They really jumped through hoops to make our always stressful visit as comfortable as possible; we so appreciate it! The Ronald McDonald house in Minneapolis is very nice and as comfortable as possible, but is also filled with kids who are much more immunosuppressed than is Robert; children who don't need exotic germs flown in from Florida. Robert's hospital visits included extensive neuropsychological examinations, an MRI, visits with the neurologist and the bone marrow transplant doctor. Lots of running around the hospital for two days, but hey, at least we were able to leave. Some of the neuropysch tests deem Robert "severely impaired" in many ways, particularly in the visual processing department. Thus, since we have been back to Florida, we have taken Robert to a Neuro-opthamologist, someone who deals with how the brain processes what the eye sees; basically brain to the optic nerve, not optic nerve forward. Blessedly, though, this doctor was right around the corner from my house. As far as Robert's neurological testing goes, his neurologist Dr. Charnas deems him stable on on side and exhibiting marked atrophy on the side which controls his left arm and hand. In short, he is quite damaged in some ways, but seemingly stable. We are just praying for stem-cell research to be able to fix this neurological damage and also people with spinal cord injuries and other debilitating neurological conditions. Robert is a happy young man living with parents who love him and help him in whatever way we are able, but he will probably need lifelong help and many of the options in life that we take for granted may not be available to Robert. This is a horrible disease and every person who knows that they are a carrier, or knows a family member with AMN, should not let it go forth another generation. Please, please communicate with your family! I can't be emphatice enough about that subject. Robert's brother Evan, thank the Lord, is asymptomatic and in a normal school program, but the doctors still don't know why there is this difference between people in the same family. We are just thankful that it is this way. In our family we hve Robert, Evan, and two grown men with classic AMN (the adult form) and Robert's cousin, Brian, who passed away in 1994 at the age of 14 after abad head injury seemed to set off the ALD. Brian is the reason we tested Robert or we NEVER would have known or dreamed that something this catastrophic was embodied in our "seemingly normal" young son. The earlier you can intervene, the better, if you do have a child with this genetic illness. The boys uncle with AMN, for instance, is in a Ph.D. program currently, so you don't know who will have cerebral, adrenal, or neurological difficulties. I am so thankful for what Robert and Evan are able to do, but this disease has been something that I have personally dealt with for 14 years now because I simply didn't know I was a carrier. Thank the Lord, I have been blessed with a supportive husband and good medical insurance and I am so thankful for what Robert is able to do and enjoy. It is hard not to wonder, however, what his and our lives would have been like without this disease. I know that this is a more metaphysical update than I normally give, but What Robert will do in his adult life has been weighing heavily on me lately. I will just keep my focus on Christ, on doing the best I can for Robert here and now, medically and dietarily, and living life to the fullest in the here and now. Please pray for us, look at the new pictures, and treat those you love with the utmost care. In Christ, Kelly,& Joe PS On the much lighter side of life, we just got back from seeing "Horton Hears a Who" and it was excellent! The boys didn't want to be seen going to a "kids movie", but I wanted to see it myself, so they were of course, willing. It never fails to astound me that "Dr. Seuss", Theodore Geisel who died in 1991 after enriching the lives of millions of children, had no children of his own. Joe and Kelly Helenihi - Saturday, March 15, 2008 at 14:21:03 (EDT) Hi everyone, Well, it has been the requisite 4 months, even though I swore I wouldn't let it go that long again. Robert's 6th transplant anniversary passed on July 21st. A huge "Yay"!!The boys are stable, which means fine and absolutely normal for Evan, somewhat compromised for Robert, but he's still a walking, talking, smart-aleck high-schooler. Robert is, thank the Lord, in 5 of six periods in high school. Since his adrenal crisis/paralysis in 12-04, that is the most "normal" school he has done, so another "YAY"!!!He is in some "on-level" and some remedial classes and school will always probably be difficult, but he is walking all over campus, keeping up his energy and feeling good about all the above. Evan, on the other hand, is on a later school schedule since he's still in middle school, but he has friends this year which he and Robert hang out with sometimes. I'm just so happy both Evan is able to do grade level work, especially when he turns it in! Anyhow, I do keep busy keeping Robert literate, but his teachers and his school understand his situation and we were blessed to have the happenstance of his vocational/scheduling specialist from middle school get a job at the high school he now attends. As well, Robert's math teacher immediatly noticed Robert's hand paralysis on the left side b/c he himself was born with three fingers on his left hand, too, so he had an immediate kinship with Robert. Even though Robert is below grade level and does struggle at things his brother finds easy, the Lord is always smoothing his path in so many ways. His Read 180 teacher is this cool, Jewish hippie chick kind of woman who absolutely loves him and is the antithesis to my type-A technique of rearing. The principal at Palm Harbor High, in this sea of Northern retirees, is also a fine Christian gentleman from Tuscaloosa, AL. Evan is in chorus for the 2nd year and is a smidgen taller than I am, at 5'6. I just wanted to let y'all out there know what is going on the boys' lives. Much, much love in Christ, Kelly & Joe Helenihi Kely Helenihi - Saturday, October 13, 2007 at 20:52:34 (EDT) Well, I think that was the longest spell we went without properly updating the boys' site. The pictures have been added all very recently, but I didn't realize that we hadn't written antthing since my birthday on 10-24-06. As you can see by the pictures, Robert and Evan stay pretty busy doing normal stuff, but of course, school is pretty hard for Robert and we struggle to keep him at a functional level of literacy. Thank the Lord, Evan is on par with all of his peers and does well with a little prodding to turn in his work. It's strange, though, Robert can hold a conversation better than many adults I know and has never been a child to despair over his condition, even with as cruel as middle schoolers can be these days. Evan finally got his black belt back in April, something for which he has worked toward for over 5 years. Aside from how well Robert and Evan are doing, it is nice to just live a normal life, which we are doing with a flourish, as you can see by our pictures! Would that we were able to live in Florida and actually BE on vacation, as opposed to actually having to live in a vacation culture and have to fit in real life around it. Speaking of life at it's realest, My brother, Hamilton King, just underwent brain surgery 4 days ago and is doing quite well, but please continue to keep him in your prayers so that his recovery continues to go smoothly. Much love to you all and keep up with the pictures; our dear friend, Laura and Christian at www.magicbus.com are the best at keeping them posted. Much, much love, in Christ, Kelly, Joe, Robert & Evan Kelly Helenihi - Sunday, June 17, 2007 at 13:39:40 (EDT) Sorry for the lack of updates to this site. All is still well with Robert and Evan. Robert is co-enrolled in a hospital homebound program and attends three elective classes a day. He is enjoying the social interaction they bring. School is very difficult for Robert at the higher levels, but the co-enrollment plan has helped and his teachers, moslty, are understanding of Robert's special educational requirements. Evan, thank the Lord, remains normal and is in a normal 7th grade educational program. More pictures and additions to this site will be forthcoming as Joe is currently enjoying a steep learning curve to help with the web site design tasks. Thank you all for your thoughts and prayers for our boys, and all of the families who must face this, and similar childhood diseases.Thanks for your patience with us!! Joe and Kelly - Tuesday, October 24, 2006 at 20:20:54 (EDT) Greetings all, we are finally updating our website for the boys again. Robert continues to improve and is on a different anti-seizure medication called Trileptal. He still takes Keppra but in a reduced dose. Robert had a really hard time adjusting to the Trileptal because it causes extreme drowsiness, uncoordination and really "knocks a kid out". What I have to do so that Robert has normal days is to give him Keppra in the morning, let him have classes or physical therapy and then at around 1pm daily I give him the Trileptal so that he can have a nap if need be. Because of this new med regimen, Robert is on a home bound school program coupled with daily art and computer classes at his middle school. Thus, he is able to not be too taxed by his meds and a full school schedule, but is able to see other kids and to interact with his peers. Anyhow, even with all of that, Robert is having great days and is a happy, funny, imaginitive young man. Evan is due for his annual MRI soon, and thank the Lord does not show any signs of the progression of ALD. This is a good sign and we are looking forward to a good report. PLEASE PRAY FOR POSITIVE RESULTS!! Robert is in good spirits and the family recently celebrated Joe's mother's birthday with a trip to Disneyworld to meet with Joe's sister and her two children. It was a fun time in a fun place, overall a wonderful time together. Robert was tired from his medication, but rode Space Mountain and a few other less intense rides and we saw a show at the Polynesian Resort at Disney World. Very Cool! We hope this message finds everyone well. The thoughts and prayers for our boys and all the families that are affeceted by ALD are a true blessing; please continue to pray for us and all the families who are affected by ALD. Jesus Christ has brought us all so far in this disease and in our spirits because of it. Love, Kelly, Joe, Robert & Evan Joe and Kelly - Monday, March 20, 2006 at 22:09:01 (EST) Sorry for the delay in updates. Robert has had progression in his seziures lately, but they are not prolonged and have not required a trip to the hospital. We are waiting for the latest MRI results taken a few weeks ago and blood tests have been sent away for testing as well. Evan, so far, has not shown any signs of this disease. We will have an update to this when Robert's latest tests come back. Please continue to pray for all those who are affected by this disease, thanks and God Bless you all. Joe and Kelly - Sunday, October 16, 2005 at 21:14:55 (EDT) Greetings, sorry for the delay in updates, so here goes. The 4 of us went to Arizona to visit Joe's aunt, Ululani, in Phoenix and we went sight seeing at the Grand Canyon, Meteor Crater and the Saguaro Cactus forest. We also went to the Grand Canyon Caverns, which is the largest dry cave system in the United States. We weren't in Arizona just on vacation, but were there because Joe's aforementioned Aunt Ulu has cancer and the kids had never before met her and Uncle Howard, so we were there for not such a good reason, but managed to make a vacation out of it nonetheless, as we have so many of our other medical trips. Robert was fine during the trip itself, but apparently picked up something during our travels and began to have an adrenal crisis the Sunday after we got back from Arizona. This time I was ready, though, and knew what I was seeing, so we gave Robert the emergency Solu-Cortef shot and some Tylenol and he was fine, but the same thing happened the next night and Robert had to go on antibiotics for some type of respiratory ailment, whereafter, he was fine. That took place just last month. But any of you out there who have never had to deal with an adrenal crisis must not only look for vomiting, but especially for shivering, as well. I was told that if this happened there would always be vomiting, but with Robert it was mainly shivering, so be forewarned. Robert continues to work his left side, he walks more normally now and is starting to get better control of his left hand and arm. The physical therapists are very happy with his progress and so are we, but we are just sad that he's had to go through so much in his life to begin with. Praise Jesus for his progress and for Evan' wellness!! Robert complains about the excersises but manages to get through with them. Evan is doing well also and thank God does not show any signs of the ALD in recent MRI pictures. Robert had a blood test last week for his post transplant follow-up and all of his levels were normal. Please continue to pray for Robert and Evan as well as all the families and boys who are affected by this disease, God bless you all. Also, two of Robert and Evan's classmates, sisters, were involved in a bad car accident a week and a half ago and one sister is still in a coma, so please pray for Jessica and Sadi Smith and for their fast recovery. In Christ, thanks for waiting for this update. Joe and Kelly - Wednesday, May 25, 2005 at 13:44:20 (EDT) Greetings everyone, this is just a quick update to let you know what is going on with Robert and Evan. Robert continues to have difficulty using his left hand, he can grip things but has trouble letting go, but he has come so far since he was in the hospital that the doctors are both surprised and amazed at his progress. Robert can walk well and is attending middle school in full days, despite the difficulties. At that, WE are both surprised and amazed. After his checkup yesterday, the Doctor didn't even need to take Robert's blood; he discerned that he was doing so well, so he goes back for another checkup in a month and Lord willing, all of the comparisons from Minnesota and All Children's in Florida will be good, but we thank Jesus Robert is doing this well after having such a crisis. He continues to maintain a positive attitude and doesn't quit. Robert also has physical therapy appointments in February, but Mom has been using her seven years of taking yoga with a rehab specialist to stretch and loosen Robert's body and to keep his muscles from shortening, much to his chagrin! He is doing so much better than when he first left the hospital in December and we thank all of you for your prayers that he regain full control of his left side. Both boys went to Chuck E. Cheese and had a great time with their friends , Adam and Katie, last Saturday night, so except for the mobility issues, life is quite normal. Evan is doing well and continues to be asymptomatic for this disease, thank you for those prayers as well. Thank you all for your contiued prayers to our Lord and Saviour, Jesus Christ, for our boys and for all who are affected by ALD and AMN, God bless you all. Joe and Kelly - Tuesday, January 25, 2005 at 14:14:38 (EST) Season's greetings. We thank everyone for the continued prayers for all the families facing this disease. Evan has been doing fine, no changes and his next MRI is scheduled for April 2005. We did have a bit of a scare with Robert recently. He started to have a fever, 102 degrees the morning of Thursday the 9th. To make a long story of trying to get to the doctor's office and having to call EMT instead, Robert had to stay at All Children's Hospital here in St. Petersburg until Friday the 17th because of Pnemonia and a temperature that reached 107 degrees. He is doing well now, and recovering from left side paralysis because of the seizure he had while he was so hot. The doctor's say that the paralysis should be temporary and that physical therapy should get him back to normal. Thank you for your prayers for Robert, Evan and all the families that face this disease. Help spread the word about this so other boys are not misdiagnosed and not treated in a timely fasion with the only known cure to date, which is a bone marrow transplant. Pray also for the doctors. Thanks, we will continue to keep you updated. Joe and Kelly - Tuesday, December 21, 2004 at 19:30:42 (EST) This update is to let everyone know that the boys are doing fine. Again, we are sorry that it as been so long since the last update. When things are going well, we tend to want to forget that this disease was ever a part of our lives; but more than that we simply get busy with the normalcy of life. The boys just got back from Minnesota on 9-11-04. Their testing was done on the ninth and the tenth. Evan concerned the neuropsychologists because of his attitude about school, so the MN folks are recommending a cognitive behavioral therapist so that Evan is able to talk out his difficulties with an unbiased ear. The docs emphasized, however, that, this change in behavior does not necessarily have to be disease related. Many children of transplant siblings seem to have a sort of post-traumatic stress reaction due to everything they've seen and been through, with the knowledge that the same may also happen to them. We have really tried to minimize this type of thnking in Evan. He and Robert are still on the oil and they have to watch their fat, but we try to help them to always dwell on the things that they can do, as opposed to the things that they can't, or what might happen to them in the future. Evan is a kind soul, however, and he is at the age, unfortunately, where kids really try to pick on one another. Gone are the days where someone can beat up a bully and stop their activity once and for all. Evan is such a sweet kid that he seems to be the magnet for abuse, but we are trying to deal with this situation, so please pray for him and for us. Robert's MRI didn't change, which is good, but we hope that it will improve over time. Some of his test scores declined slightlt, but he wasn't taking the Attention-Deficit medication he had been on previously, either. Basically, he is navigating through middle school well and getting along quite nicely. We'll have more later about the boys' vacation to the Redwoods in Northern California and how we made it through all of the hurricanes, but that's it for now. Thank you all for your constant prayers and thank Jesus that we are all doing well here in the plywood capital of the world. In Christ always, Joe, Kelly, Robert & Evan. Joe and Kelly - Monday, October 04, 2004 at 13:49:44 (EDT) May Jesus bless us all. Robert and Evan continue to do very well; they are out of school now and are enjoying summer vacation. We have managed to see three movies this past week alone! Frivolous fun, but it is so nice not to have to worry about living in hospital rooms, sitting in doctors' waiting rooms on a regular basis and not being able to swim with the kids in the beautiful Florida Springs. We both know that we will never stop marveling over the ability to live a life that most people take for granted. We are sorry that it always takes us so long to update our site, but it gets so busy when everyone is well and living a normal life. Robert and Dad's trip to Minneapolis in March went well, we give many thanks to God that his hearing, vision and cognitive abilities remain strong. He has a hard time with schoolwork, but we help him in any way we are able. Robert graduated from fifth grade and it was such an emotional event because he had the same teacher for two years in a row and we all got so attached to one another. Thank you for all of your hard work and accomodations for Robert, Mrs. Kavouklis!! Robert's end of the year activities included a fifth grade picnic, a trip to Weeki-Wachee Springs for a day of swimming and a school chorus "Peace concert" performance. Back in March we were fortunate to get to hear former President Jimmy Carter teach Sunday school at tiny Maranatha Baptist church in Plains, Georgia. It's free for anyone who gets there early enough, they don't charge latecomers it's just that there is no room, and it is so cool to see the former President of the U.S. preach the Gospel. Please, everyone who reads this, pray for the folks who sign the guestbook here. People need to stick to what works in order to live life to its fullest. We are fortunate that the many prayers that have been said for our boys have been answered, but Christ would still be our Savior even if our earthly lives didn't turn out the way we expected. Evan and Robert are tentatively scheduled to return to Minnesota in July. This is necessary for evaluating where Evan stands in progression, if any, and how Robert is doing post transplant. Both boys are still on Lorenzo's Oil, Evan to prevent the disease and Robert because he is partially engrafted. It doesn't hurt, therefore it can only help. Evan so far has shown no outward or inward signs of ALD progression, thank you Jesus. Robert continues to show improvement and a lack of disease progression based on the MRI's done in March. We are scheduled to go to California in the middle of June on vacation to see the Redwood trees and to visit Joe's cousin Ronny in Portland, Oregon. It is such a beautiful area; we want to give the boys the perspective of seeing a land like God made it and seeing the world's largest living organisms. God bless you all, thanks for the prayers for all those who face this disease. Joe and Kelly - Wednesday, June 02, 2004 at 21:03:06 (EDT) Greetings all. We went to Fairview University Medical Center in Minneapolis MN. in early December with both Robert and Evan for the MRS (Magnetic Resonance Spectroscopy) and Neuropsych and developmental testing. Evan shows no progression of disease at this time, thank the Lord. "Not a blip on Evan", Dr. Shapiro, the head neuropsychologist, says. Robert is a bit of a different story, however. Don't become alarmed all who have been following Robert and Evan's story. This is a truly unique situation in the annals of ALD transplants. We thought that we would go up there and get the "fly, be free" clean bill of health for Robert because he is 30 months post transplant, but apparently the Drs. saw something on the MRI scans and noticed some differences on Robert's neuropsych testing. Oddly, Robert's vision has actually improved and the part of the brain wherein the disease started has improved as well, praise the Lord, but Robert's Drs. see some changes in the front that they don't know whether to attribute to long-term prednisone use, dead cells sloughing off, or whatever changes the brain may undergo in the course of healing after such a traumatic medical procedure. The folks in Minnesota haven't seen Robert or Evan in 13 months, so their response when pressed them for answers was simply, "we just don't know, we've never seen this before", where one part of the brain is improving and another seems to be different. That is, they've never seen what the're seeing in the course of 20 years of ALD transplants. There is still an issue with Robert's partial engraftment and his not having the benefit of a full graft, but if his graft weren't working then it would not be logical for one part of his brain to improve. Thus, the doctors want to see Robert back in MN in March just to be sure that they follow his progress closely. At this point in his recovery from BMT, and any remaining issues he may have related to ALD, Robert's hearing and eyesight remain perfect as extensive testing when we were there proved. He is going to public school and has only been sick three times this year, none of which required hospitalization, halleleujah! That is a huge praise report in and of itself. Speaking of grafts, another specific prayer that I had been petitioning the Lord with was for Him to strengthen Roobert's graft and to keep him healed. Last week or so ago I found out that Robert's engraftment percentage had moved up from about a third of donor cells to over half on one measurment (monocytes) to nearly half on the other measurment(neutrophils). Lord willing, Robert will be healed from all of this health-related turmoil and go on to live as normal a life as he is living now; it will only be with Jesus, though. Please continue to pray for these and all the other boys who are afflicted by this dread disease, God Bless you all and thank you for keeping Robert and Evan in your constant prayers. Please pray for Robert to have a great visit in March. Joe and Kelly - Thursday, February 19, 2004 at 23:27:10 (EST) Just a quick note to let everyone know that things are going well. Robert and Evan's recent MRI results were fine, and we should be going to Minnesota in a few weeks for follow-up tests. There will be a more substantial update at that time. The boys are back in school, and having a great time. Thank you all for your continued prayers for us and all the other folks who sign the guestbook who face this disease, God bless you all. Joe and Kelly - Monday, September 22, 2003 at 18:03:36 (PDT) Hey y'all, we've got a favor to ask. Please pray for a negative disease progression prognosis for Robert and Evan as they endure yet another MRI test. They will be tested here at home on Wednesday and hopefully only Evan will have to go to Minnesota for the advanced study. Robert will be able to stay here if no significant changes are found in his brain scan (MRI). Evan, asymptomatic so far and in no need of a bone marrow transplant at almost 9 years old, is participating in an advanced study which requires a more detailed "picture taking" of his head with an experimental MRI machine. This test is available only at Minnesota's Fairview University Medical Center. These semi-annual tests will help the doctors to more acurately diagnose ALD and hopefully lead to earlier treatment of ALD prone boys. We have had a wonderful, and thankfully uneventful, time since April, our last update month. Currently the boys are getting the most fun they can out of summer vacation. As you all know, last year at this time, Robert was still in partial isolation and was prohibited from swimming in our lovely Florida springs and taking part in many other activities that people take for granted. As a precaution, Evan was unable to do these activities, as well. This summer, however, the Lord has seen fit to give us a normal, wonderful summer of leisure activity. In May, as many of you know, Robert, Evan, Joe, Kelly, Grandparents, Elaine and George, Joe's sister, Carolyn and her two children, Erin and Garrett, were able to go on a seven day Disney cruise! We went all over the Eastern Carribean, to Disney's private island in the Bahamas, Castaway Cay, and generally enjoyed ourselves with no illness whatsoever. The latter was particularly significant in that, when this cruise was scheduled, Robert had just been in the hospital with another bout of hemolytic anemia and Norwalk virus was making it's virulent rounds through many criuse ships, including the very one we were scheduled to sail upon. In short, I was scared to death to have Robert out in the middle of the ocean, without his regular doctors for seven days, but I specifically prayed that we would have an "uneventful, normal" vacation, and that we did, praise Jesus! Robert and Evan had their own room keys and practically ran the place. It was an absolutely wonderful vacation, compliments of Joe's mom, Elaine, who insisted that we all go on this cruise, and paid for the whole affair. Additionally, we just got back yesterday, (7-6-03) from a nine-day vacation in Trenton, NJ, the home of one of Joe's high school friends, Victor Brubaker, who was our hotelier, guide and general host as we visited the lovely Northeast during it's beautiful, lush summers. We and the boys enjoyed their time in Trenton in Vic's awesome victorian home, saw the Liberty Bell in Philadelphia, as well as Constitution Hall, where the Declaration of Independence was signed. We were guided through NYC by Vic's competent roomate, Mike, took the Staten Island ferry, where we saw the Statue of Liberty, an exhaustive walking tour of NYC, went to the top of the Empire State Building, and walked through Central Park, saw the NY Stock Exchange, Wall street, Times Square, Broadway, etc. We had a wonderful, normal time and the boys did great with all of the walking. They wore us out! Please continue to pray for all the families affected by this dread disease. Read the guest book and pray for the affected families of ALD, but ignore the weird messages from those that want you to invest in schemes and propositions of dubious merit or credibility. God bless you all. Robert and Evan's MRI's are Wednesday, July 10th, at 2pm. Please pray for their continued stability. In Christ, Joe, Kelly, Robert & Evan Joe and Kelly - Monday, July 07, 2003 at 23:21:06 (PDT) Sorry it has been a while since the last update. Things have been pretty normal since then, but there are new developments with Robert's engraftment that warrant reporting. Robert's blood results for platelets, white blood cells and hemoglobin are all in the normal range, even for folks who never had a transplant. His hemoglobin was 13.7, for instance, and he had not been to the doctor since January (We got scolded for that one)! These results are the best we have seen for him since before the July of 2001 transplant. The measure of engraftment, how much host (Robert) versus donor did drop in one catagory of measure and increased in the other. In October of 2002 his Monocytes from the donor were 51.2% and Neutrophils were 28.8%. The most recent results drawn on Feb. 26, 2003 were Monocytes 28.0% donor and Neutrophils 35.7%. Thus, at about a third, his engraftment is lower, and we are all praying that he has enough of the transplant left to fight the effects of the ALD. The doctors tell us that graft loss is something that generally happens rapidly when a graft is entirely lost, but that they expect Robert to stabilize. What his graft is doing is somewhat odd to the medical community, but our nurse coordinator said that ALD boys with lower engraftment have continued to maintain normal function. Normalcy is our prayer. Robert continues to do very well in other aspects, and is like any other 10 year old. He rides his bike to school, about half a mile, one way, two times a day, goes to school all day with little difficulty and plays with his friends thereafter until it is time for homework, dinner, bath and bed. Evan recently started riding also, as opposed to being dropped off by car. Both boys go to karate three or four times a week, an expense that may seem a bit of a splurge, but that helps with mental focus, as well as physical agility. We are so thankful that Robert and Evan are both living normal lives as running, playing, little boys. They are both pumped up on Jesus and health food! As well, Robert and two of his classmates recently won an award in the district science fair. Theirs was an experiment which tested the rates of descension for parachutes made of different types of material. Their award category of "exemplary", we were told, was the highest in achievment. We go to the awards ceremony tomorrow night, April 23rd, 2003. Yay!! Evan and Robert are scheduled for MRIs to be done locally, and pending those results, Evan will still have to go to Minnesota as part of the ALD study, but not necessarily Robert if no changes are seen. Please continue to pray for Robert and Evan, and for all the boys and families with this disease. We recently read in the paper that mice with MS, a more common demylinating disorder, have been successfully treated with stem cells. We pray that this hideous disease will disappear altogether. Please sign the guestbook and email us if you have any questions. Thanks, God bless you all. In Christ, Joe, Kelly, Robert & Evan. Joe and Kelly - Tuesday, April 22, 2003 at 21:38:11 (PDT) Greetings. This website has lost some of the updates, May 2002 through Feb. 2003. If anyone has a cache copy of these updates please email them to kelly@aldboys.com. We are looking for them to add back to the site. Robert is doing well and has not had any serious side effects from his transplant. He and Evan continue to do well, and show no progression of the ALD.We are waiting for Robert's latest DNA test, which will show his engraftment level. He was 51% donor cells as of 10-02. We pray that he is maintaining engraftment. Please, please, pray that he and Evan continue to do well. Evan's endocrinology test is aso due, so please pray, as well, that he stays stable, too. Robert gets up earlier than any one in the house, makes his bed, makes his breakfast (until I get up and add some healthy food to his diet!), all so that he can ride his bike to school. He and Evan are walking miracles! They both do Karate and are orange(Robert) and blue(Evan) belts, respectively. We are so thankful! Sorry it took us so long to update you all, but we appreciate your interest and especially your constant prayers to Christ for us. Sometimes you get too tired and worried to pray and we have always depended on y'all to lift us up. Thank you for continuing to do so. Much love, in Christ, Kelly & Joe Joe and Kelly - Sunday, March 09, 2003 at 21:02:40 (PST) Greetings. We are back in Florida after our visit to Minneapolis. Suprisingly, when we arrived at the Ronald McDonald House Saturday evening, 4/13, many people crammed the common areas downstairs to celebrate the Grand Opening for the new addition to the house. We felt great to be invited to the celebration, after getting checked into one of the new rooms. Especially due to the fact that we endured the construction noise of the new addition last summer, when we were across the alley at the Tairrie house where our apartment was, for Robert's transplant. This noise made for many sleepless early mornings, beeping, hammering, etc. This house now holds over 40 families and is tricked out with TV rooms, a gym, many playrooms for the children and all sorts of other ammenities for families undergoing these types of extreme stress while their children are ill. Siblings are welcome and each family gets a small, suite-type apartment that will sleep eight people in case relatives want to visit. All for only ten dollars a night! We are definitly plugging this place, so remember to put your spare change in those Ronald McDonald house bins whenever you go to McDonalds. This party was an excellent kickoff for the week of testing that lead to the great reports we got back on Robert and Evan today. While we were up there the Neuropsycholigists and neurologists told us that Robert is doing "better than we could have expected" and "hasn't deteriorated at all". In fact, many of his tests improved, with some staying the same. This was the best news ever! We just today found out about Evan's MRI and thank God it is not showing any signs of "active ALD" disease! His neuropsychological testing went extremly well, also. We are very happy and feel blessed to be providing this praise report to you all. We know that we wouldn't be here all living together in our house as a happy, whole family without Jesus Christ and the constant blessing of so many people lifting us up in prayer. If the Lord wills and is merciful, we will be able to continue in that fashion. Robert's blood levels, specifically the hemoglobin, have normalized and we are tapering his steroids. After about 2 months we are directed to begin the cyclosporine (CSA) taper (again). He is currently taking 1.1ml of CSA twice a day, and is down to 5mg of prednisone in the evenings. We had hoped that his engraftment level of 51-77% donor cells would have come up but, thank the Lord, it didn't drop any. The current level of engraftment is sufficient to produce enough enzyme to fight Robert's illness. Please continue to specifically pray for those cells to go up and for Evan to stay so well he won't even need a transplant. Also, please lift up in prayer all of the other families and their children who are suffering through life-threatening illnesses and sometimes painful medical treatments. It may sound cliche', but be truly glad when you are able to live in your own home and not have your emotions determined by medical tests. There is a whole other world of people living in hospitals who have to make a home out of a medical wing and have to live life attached to IV poles. Please remember them as you go about your day and always be thankful. God Bless you all, and thank you for your prayers. Joe and Kelly - Thursday, May 02, 2002 at 04:59:18 (GMT) We are very happy to report that the treatments of Retuximab and prednisone have been successful in getting Robert's hemoglobin counts to 12.0. His other blood counts were good, as well. Another DNA test will be done around the first of April when the Retuximab drug has worn off some, because it affects white blood cells and the DNA test is based on white blood cells. Please specifically pray for the results to improve to greater than the 75% donor cells that he showed back in February. Thank God for the answer to so many prayers in his behavior, his great blood counts and his general demeanor. Robert is such a little man now. His situation has kind of pushed him into a greater maturity than he has shown previously. Both boys are full of fun and laughter, they continue to wear us out with their youthful exuberance and comic antics. Please take time to view the guestbook, there are others who are faced with the decisions we have had to make, our prayers go out to all. Robert is in the process of tapering off of prednisone, a steroid, and his CSA, an immunosuppressive drug, remains at 1.1ml. We all are going to Minneapolis during April 13th through the 19th for Robert's 6 month(it's been 8) checkup and to have Evan's MRS (Magneto resonance spectroscopy) done. please pray for great results! Robert did not need to check in at exactly 6 months, and this schedule fits better with Evan's checkup as well. Please continue to pray for us, and for all the boys who are aflicted with this disease. God bless you all. In Christ Always. Joe and Kelly - Monday, March 25, 2002 at 00:40:45 (GMT) This is just a quick note to let everyone know Robert is out of the hospital, his levels are at 5.5 hemoglobin, which is low, 8 to 9 is good for him. Please continue to pray for his recovery, and the people who have signed our guest book who have sick children. Thank you and God bless you all. Joe and Kelly - Tuesday, March 05, 2002 at 04:26:10 (GMT) On Feb. 15th we had to admit Robert to the All Childrens Hospital again here in Saint Petersburg. He was running a fever and had thrown up several times. He was also quite pale and when they did blood tests at the hospital his hemoglobin count had decreased to 3.1, normal for him is around 9 and for most folks 11 to 14. He could barely walk and had a heartrate of around 150 because his body was trying so hard to oxygenate itself due to the low hemoglobin. He had been acting tired, but we had no idea that he was in this condition. The doctors concluded that the cause of Robert's low hemoglobin was autoimmune hemolytic anemia. This serious complication is sometimes seen when patients are tapering off of their immunosuppressant drug cyclosporine, or when they have had a virus; Robert was both on his taper and had a recent virus. He was given a total of 3 pints of red blood cells from Sunday to Tuesday, and after 3 treatments of immuno-globulin, Robert has stablized at a hemoglobin of around 4. The last two hemoglobin tests have resulted in increases in his counts, 4.4 being the last one at 9am this morning. His platelets have dropped, though, and the doctors are still concerned about his overall condition. We have been staying overnight with him on alternating shifts, and will continue to do so until the doctors tell us it is safe for him to come home. Another DNA test was done to make sure that Robert's graft is still doing well. Please continue to pray for a complete recovery, for a strong graft, and for him to live a normal life if it is the Lord's will that he do so. Robert has been getting irritated and discouraged because of these long hospital stays and from being taken away from his friends and school. Some of the irritability is from the steroids he has been administered to control his hemoglobin from dropping anymore, but it is also a result of having undergone more in his life than most adults have had to undergo.Please send encouraging cards, if you will, because they help lift Robert's spirits. I'm so sorry that we didn't update this sooner, but we had no idea that Robert would be in the hospital this long. We pray that something hasn't happened to his engraftment and we wish that you would, as well. In Christ, Kelly, Joe, Robert & Evan Joe and Kelly - Monday, February 25, 2002 at 21:53:15 (GMT) Thank you all for the prayers, they are working. We have begun to taper Robert's CSA, or cyclosporine. CSA is an immune system suppression drug that keeps the host, Robert, from fighting the graft, the bone marrow, until it gets established. Since it is the main immunosuppresant that Robert's new system has to tolerate, getting off of it with no measurable signs of Graft Versus Host disease, or GVHd, would be a big step in Robert's ability to mix with the general population. It is another one of those crucial times in a bone marrow transplant patient's recovery. The CSA taper is scheduled to conclude, Lord willing, at 20mg on March 20th. We must watch for signs of GVHd, the sympoms are documented and if they appear, will lead to more treatments including a prolonged CSA schedule and or steroids. Let's pray that this doesn't happen and that Robert and his donor were a successful enough match that the graft is strong, but not harmful, to it's recipient, Robert. Robert has had some itching lately and this may be mild GVHd, or it could be the extra hairs he grew while on CSA, falling out. We apply lotion to the dry skin and give him children's benadryl tablets if he is really itchy. Oatmeal baths, ground oats liberally applied in a warm tub, also help the itching. We like seeing signs of his graft working, but these symptoms are still mild and, Lord willing, the will remain so. Other crucial times in a transplant patint's recovery period are his six -month DNA test and follow-up visits to Minnesota. If steadfast protocol were applied; Robert would have gone back to Minnesota late in January. However, despite two three-day hospital visits in the latter part of January, Robert was allowed to remain in Florida until Evan is scheduled to go back for his check-up in April. Halleleujah for that! We came to Minnesota in the green and glorious summertime, but travelling there in January is quite a different can of peas, to say the least. In the next week at his check-up, or maybe this week if we want to overnight mail it ourselves; Robert's DNA test to show the level of engraftment will be done down here, with the blood sample sent to Minnesota in either case, because they have all of the DNA information on Robert's donor. PLEASE PRAY MOST OF ALL THAT HE REMAINS FULLY ENGRAFTED!!! The viruses he had affected his blood counts somewhat, but the folks down here and in Minnesota found his results to be typical of a kid with a virus and not of dire concern since Robert was given great care at All Children's Hospital in St. Petersburg while he was ill. All of the bacteria cultures taken while Robert was a patient there came back negative as well, so after three days of strong antibiotics and at least thirty-six hours of not having a fever, he was released on both occasions. Thank the Lord, he plays, beats on Evan, rides his scooter and acts like a normal ornery child. Eating is still an issue, but Robert does drink Boost to supplement his diet with vitamins and protein. He seems to be enjoying fried food and pizza after having been on a special diet for so long, but hopefully we are not indulgent to the point that it is detrimental to the boys. Robert needs a healthy diet to recover and Evan doesn't need lots of fat. Joe is teaching the boys chess and they are becoming avid board game enthusiasts, although we haven't finished a Monopoly game yet. The boys' teacher for the homebound student program, Mrs. Terrero, comes three times a week and stays two hours at a time. They seem not to be falling behind in their schoolwork and they miss their classmates, but I don't think they miss the regimentation, whether they realize it or not. The schedule for Robert and Evan's office visits start on April 15th at 7am for Evan in the Magneto Resonance Spectroscopy machine, which is sort of like an MRI only stronger, and more detailed in the 3 dimensional mapping it can do of the brain. Then both Robert and Evan are in and out of their various doctors' offices until 2pm. On the 16th we start at 9am with the neuropsychologists, who extensively test the areas of the brain which are affected by ALD, and are done by 2 or 3pm. Then the 16th and 17th there is more detailed neuropsych testing scheduled to determine motor coordination and perception skills for both of our boys. We wish to offer many thanks for the prayers and continued praying for Robert and Evan and the grateful parents of these wonderful children. We were just sent e-mail from two parents in Michigan, Sue and John Conklin, whose ten-year old son was just diagnosed with ALD and may have to undergo a bone marrow transplant. Their younger son will also be soon tested for the disease, as well. They are scared and we know how they feel. Please pray for the Conklins when you pray for Robert's DNA test and Evan's continued wellness. Thanks so much! In Jesus! Kelly, Joe, Robert and Evan. Joe and Kelly - Wednesday, February 13, 2002 at 08:56:55 (GMT) Thank God the visit to the doctor last Wednesday, as well as the visit two weeks before, showed that Robert's platelet count was up again. This week marks a half year since his transplant. The CSA, which is an anti-rejection drug, will be taperd off from the current 180ml to zero by the middle of March. This is the drug which primarily suppresses Robert's immune system and makes it easier for him to get sick, so Lord willing, the tapering down will go smoothly. In addition, it is also a significant time, as the symptoms of Graft versus Host disease could become visible. Please continue to pray for Robert's recovery. Today, for the first time in quite a while he wasn't feeling too good and he says his stomach hurts. He is also very sleepy and has slept most of the morning. Please pray that he feels better soon. Thank God that these prayers are answered, and God bless you all. The boys also still love getting mail since they are not in school and still feel rather isolated. If you have the time and the stamps we'd greatly appreciate hearing from y'all. Joe and Kelly - Wednesday, January 16, 2002 at 18:41:37 (GMT) Sorry we have not updated this in a while, Robert is doing well, he had a slight drop in platelet count due to a virus. He is getting over the virus and has been feeling better every day. Thank God he has not needed to be hospitalized since we have been back in Florida. Happy holidays to all, thank you for your continued prayers and God bless. Joe and Kelly - Thursday, December 27, 2001 at 04:17:06 (GMT) We are back in Florida! Robert is doing fine, we have appointments next week with the lab and doctor(s) that will be following up his transplant. There are many things to do after being gone from here for five months. Both Robert and Evan will be home schooled for the rest of this year, the teacher comes next week. Thank you all again for your steadfast prayers, God bless. Joe and Kelly - Saturday, November 03, 2001 at 17:43:46 (GMT) Look out Florida, here we come. Kelly, Robert and Evan will be home on Saturday. Joe will be back Monday, after driving the 1600+ miles that separates MN from FL. Thank God for this wonderful praise report and the continued good health of Robert and Evan. Evan had his MRS (magnetic resonance spectroscopy) test this morning as well as neuropsycology testing. So far, everything is as normal with him as can be expected. He will have to come back to have testing done again in 6 months. Thank you for your prayers and God bless you all. Joe and Kelly - Friday, October 26, 2001 at 16:40:03 (GMT) We are one step closer to Florida. Today, at the clinic, Robert's Platelet level was 118,000. Moreover, his PIC line was removed so he no longer has to contend with the tubing, clips and valves hanging from his arm. He will still need blood drawn for testing, but Robert said he is willing to be stuck once a week. His main concern was being able to catch the NFL football the Vikings gave him 2 weeks ago. Several team members came to visit children in the hospital and were handing out signed game balls. Without having to worry about the PIC line in his arm he says he won't drop as many passes. We plan to play catch in the parking garage later today, it is cold and windy outside. He is really getting good at picking up 5 and even 10 yard passes. Now that the PIC line is gone we will try longer passes. Thank you all for your prayers and thank God for answering. God bless you. Joe and Kelly - Thursday, October 25, 2001 at 18:14:52 (GMT) Monday's clinic visit was the best one yet! Robert's DNA test from last Tuesday shows 100% donor cells. We have another appointment on Thursday to get the rest of the day 100 results, and for checkout consultation. All indicators point to our being able to return to Florida this weekend. Kelly and the boys will fly back, possibly on a Corprate Angel charter flight, or a non-stop Northwest flight. Joe gets to drive the minivan back. Thank you all for your steadfast prayers for Robert and us. God bless you. Joe and Kelly - Tuesday, October 23, 2001 at 16:03:56 (GMT) Good news! Robert is out of the hospital and is doing great. His blood counts are very good, and his platelets are at 101,000. This means that he is making his own and is closer to the normal range of 150-300,000. Please pray for his DNA ingraftment test results that are due in about 3 days. God Bless you all. Joe and Kelly - Tuesday, October 16, 2001 at 18:14:22 (GMT) We had to take Robert to the hospital late Thursday night. His temperature went up to 103.8 on the thermometer here at the apartment. The oncall doctor told us to bring him to the hospital for monitoring and to start a course of antibiotics. When we got to the hospital his blood pressure was low, and his temperature was 103.5. Cultures of his blood have so far proven negative for any specific bacteria, and as of this update Robert will be able to leave the hospital Monday. The doctors are going to determine if he needs to continue with the antibiotics, and if so, we will administer them after Robert is discharged. Thank you all for your continued prayers, God Bless you. Joe and Kelly - Monday, October 15, 2001 at 05:46:49 (GMT) Our clinic visit today showed that Robert is making his own hemoglobin (red blood cells) and platelets. Both levels show significant increase since his clinic visit last Thursday. His white blood cell count of 3600 means that he is not fighting any infections, elevated levels can be undesirable at this point. His platelets were measured at 80,000, up from about 53,000 just four days earlier! Halleleujah! The day 61 DNA engraftment test was reanalyzed and the donor engraftment showed 80 to 85 percent. These, combined with Robert's energy level, have persuaded the doctors to decide that the day 100 tests can be done on Friday, day 85. This is incredibly good news, but of course, we won't be home until we get home. THANK YOU ALL for the steadfast prayers. May God bless you all for the support you have shown Robert and us during this time. We cannot convey how much the cards, prayers and financial support have helped us during this time when we have felt like strangers in a strange land. Y'all have made it possible for us to get Robert fast food when his appetite was at an ebb and he wanted to consume little else but Taco Bell food and Domino's Pizza. Y'all made it possible for us to take the boys on some nice outings before we became consigned to hospital life; you made the highlight of Robert and Evan's day their trip to the mailbox. Most of all, though, everyone kept praying for us. Please keep doing so, as we have for you all. Evan will have his MRS (Magnetic Resonance Spectroscopic) exam before we leave; this is an experimental research study for asymptomatic ALD boys to monitor early biochemical brain changes. Please pray for Evan and this test. We hope that they won't have us up here again for a repeat performance, but if we do, the sooner the better, as you all know. Again, God bless you all and thank you again for your continued prayers. With love, from Kelly, Joe, Robert & Evan. Joe and Kelly - Monday, October 08, 2001 at 23:05:29 (GMT) The results of Robert's recent DNA test to see the percentage of donor vs. host white blood cells done on day 61 indicates 74% donor cells to 26% host cells. This is a bit less than the day 21 test results or 95% donor cells. The doctors say that the recent infections that Robert had to fight off mobilized what's left of his own immune system to make these extra white blood cells. This is not necessarily a bad thing; mixed white blood cells will continue to police the blood stream and the donor's cells will make a difference in that they will produce the enzyme that Robert needs to combat the affects of ALD. Robert needs everyone to pray that the donor bone marrow continues to provide white blood cells. These new cells are vital for producing the enzyme that stops the ALD from getting worse, and in some cases reverses damage that has already been done. We thank you all once again for your prayers and support, God Bless. Joe and Kelly - Friday, September 28, 2001 at 13:06:41 (GMT) Robert was discharged from the hospital today. He has 3 antibiotics left to take, these are administered through his new PICC line. We are learning many things about nursing, specifically the operation of homecare intraveinous devices. The PICC line is basically a tube with 2 ports on it that goes into a vein in Robert's right arm. We attach thick skinned pressurized ballons containing the antibiotics to one of the ports on his PICC, and in about 30-45 minutes the antibiotic is delivered by the difference in air pressure. These are administered concurrently, 3 times a day. Before, during and after each antibiotic ball, the line needs a saline flush, plus a heprin (anti-coagulant) lock at the end of each of the daily dosages. Robert's last course of antibiotics will end on Sept. 31st, 2 of the 3 end in 4 days. The Hickman line was removed in surgery, at the same time the new PICC was put in on Thursday. The doctors tell us that if he does not have problems with the PICC, he can keep it for the duration of his time here in Minnesota. This is day 63, of the 100 days post transplant that the doctors require us to stay here in Minnesota, and they say that the PICC could easily last until October 28th, day 100. Robert also had his second DNA blood test on day 61. That particular test takes three days, at least, to get the results and it lets us all know the level of engraftment that the new bone marrow undergone in Robert's body. He had what the doctors considered to be a case of graft-versus-host-disease(GVHD) while in the hospital. This appeared in the form of a sunburn-like rash. GVHD can cause problems, but it is a sure sign of engraftment. Please, though, in your prayers, ask for all donor cells to be present in Robert' DNA test and for him to stay out of the hospital, if it is the Lord's will. Thank the Lord Jesus that we are all four home this evening and THANK YOU ALL so much for your continued prayers and support by sending cards to Robert and Evan. The highlight of their day is going to the mailbox. Joe and Kelly - Saturday, September 22, 2001 at 01:21:44 (GMT) Better news. Robert has not had a temperature over 100.5 since 6:45am on Sept. 17th. He is scheduled to have his central or "Hickman Line" removed tomorrow at 9:00am because the doctors feel that the line may be infected. The surgery was originally scheduled for sometime after 1:00pm yesterday, but they moved him back to tomorrow due to emergency surgeries yesterday. After he has the central line removed they will give him what is known as a PICC line in his arm. This will stay in for about 3 days, then he will get a new central line again. If he continues to have temperatures below 100.5 they will let him leave the hospital, maybe as early as Friday, to stay at the apartment. He will still have to go to the clinic, and continue on the 4 different antibiotics he is currently taking as a precaution against infections. Thank you all for your continuing prayers, God bless you all. Joe and Kelly - Wednesday, September 19, 2001 at 15:10:39 (GMT) This update is to let everyone know Robert is staying in the hospital, he is still having higher than normal temperatures that indicate some underlying infection. The doctors think that his central line, or 'Hickman Line', may be harboring a staph type of bacteria. The doctors want to replace the central line, where all of his meds are delivered and blood samples are drawn. This may happen soon. We can take Robert outside the hospital twice each day, between 10a to 2p, and 6p to 10p. We walk him back to the apartment and he and Evan play checkers and battleship. Keeping Robert active is good for his recovery, and the doctors are encouraged to see him out and about. Thank you all for your prayers. God Bless. Joe and Kelly - Monday, September 17, 2001 at 22:56:17 (GMT) On Friday afternoon, Robert's temperature went above the 100.5 degree threshold that the doctors watch for signs of infection and subsequent fever. At 100.8 we treated this with Tyleol and waited. At 101.6 degrees late Friday night the on call doctor instructed us to readmit Robert to the hospital. He is still there as of this update, and is doing well. His temperature fluctuates, but the nurses do not let it get to high and monitor him closely. He will have to stay in the hospital until he goes a full 24 hours without temperature readings higher than normal. He has a slight cough and a stuffy nose, and he may be fighting off a virus of some sort. The doctors say that it will take longer for Robert, and BMT patients in general, to fight off common viruses that the rest of us can easily combat. In other words he may be in until sometime mid to late this coming week. Thank you all for your prayers and God bless you, Joe, Kelly, Robert and Evan. Joe and Kelly - Monday, September 10, 2001 at 00:36:37 (GMT) Robert was discharged from the hospital today, ahead of schedule. He is doing much better and is playing and laughing like nothing happened. He has a couple of appointments with the doctors tommorow so I will keep this brief. Thank you all once again for your continued prayers, God bless you all. Joe and Kelly - Thursday, September 06, 2001 at 00:02:35 (GMT) We were hoping that the next update to this would be as positive as all the others so far. Robert had a reaction to the CSA (cyclosporine) which is a necessary medication he must take to suppress his immune system while the donor's immune system grows. This reacion was what the doctors termed a "mild seizure". It was very frightening and I will spare you the details. The doctors are not concerned, they said that this can happen and is an unfortunate side effect of this particular medication. It happened at about 3pm on Sept. 3, Kelly and I took him to the emergency room per the on call doctor's instructions. He was admitted back to the hospital and will probably have to stay there until Thursday or Friday. He is doing well, and feeling stronger as the hours pass. Initially he was weak and disoriented but the doctors say that these symptoms are temporary. As of this writing he is meeting their expectaions for recovery from this type of reaction to the CSA. This was difficult to type and I should suspect for all of you, hard to read. Please continue to pray for Robert's recovery and continued good health. Thank you all and God bless. Joe and Kelly - Tuesday, September 04, 2001 at 19:28:02 (GMT) Robert's clinic visit today showed his white cell count at 5000! He had platelets added, but that is to be expected for at least the next 2 weeks. This is just a quick note to let everyone know that Robert is doing great and our family is very thankful for all the prayers and support of our friends and family. To all the folks who have boys affected by ALD who sign the guestbook in support of us, we will keep you in our prayers. We encourage everyone to read our guestbook and pray for them as well. Thank you all and God bless you. Joe and Kelly - Friday, August 17, 2001 at 16:50:47 (GMT) Very excellent news! The results from the genetic screening test came back today as 95-99% donor cells! This means the new bone marrow has taken hold and is working! Robert's levels of white blood cells were measured on Sunday at 3900, up from 2100 just two days before, on Friday. This increase was without the use of growth factor drugs! His platelets did not need replenishing; they were at 50,000. If the platelets drop below 40,000, for instance, he needs to have more added. The platelets are the last cells that the new bone marrow will manufacture; they are responsible for repairs to the body's tissues, so he may need more in the future. For now, all is going very well, thank you all for your support and your steadfast prayers. Robert's not out of the woods yet, so to speak, but seems to be getting closer to the tree line every day. God bless you all. Joe and Kelly - Monday, August 13, 2001 at 14:33:08 (GMT) Robert is being discharged from his hospital room today and will stay at the apartment here until his 100th day after transplant, October 27th. He has not had a fever for the last 3 days and his white blood cell counts are around 3000, normal range is 5000-10000. We will have to take him to the clinic every day for about 2 weeks to make sure he is ok. So far he is doing very well, thank you for your prayers, God bless you all. Joe and Kelly - Wednesday, August 08, 2001 at 12:26:13 (GMT) Thank the Lord and everyone's prayers, Robert's white blood cell count was measured at 1000 on August 1st! The doctors are excited and happy about this, as are we. To give some comparison, a person who's immune system is "normal" has a white blood cell count of 5000 to 10,000. The Neutrophils, which are important components of the white blood cells, were 96% of that measure. This is awesome. These "counts" have been helped by growth hormone, but our doctors and other knowledgable medical personnel are quite pleased with Robert's progress. Thus, he is doing very well, but please keep praying because according to our optomistic doctor, "this is the first of many hurdles", Robert will overcome before he is completly healed from this rigorous procedure. One of the most important tests will occur on Robert's 21st day after transplant (nine days away!). This test will measure whose cells are growing, the donor's, Robert's, or both. We want full donor engraftment, with none of Robert's 'original' cells returning. Please make this your specific prayer, full donor engraftment, with none of the negative complications, such as dangerous graft vs. host disease, infections, viruses and fungal disorders, for instance. Robert has already had many of the expected side effects of the medicines necessary for this transplant. Some of these include high blood pressure, hair loss(we shaved his head before it got too messy), and some irritability that is due specifically to steroids that are necesary to stimulate bone marrow growth. These are all side effects to be expected, according to our doctors. We encourage everyone to keep praying that he will come through this successfully. Thank you all once again for your vigilance in prayer, letter writing and card giving. The cards and letters are posted all over Robert's hospital room. Thank you, thank you all. Always In Christ, Kelly, Joe, Robert & Evan. Joseph and Kelly - Wednesday, August 01, 2001 at 22:25:57 (GMT) Hi everyone, I spoke with Kelly and she told me that Robert is doing great! He has only had two bouts of throwing up: once during the radiation treatments, attributed to a dinner of cheese pizza and orange juice, and once after the bone marrow transplant, due to taking his pills on an empty stomach. Otherwise he is cheerful and active and seems to feel pretty good! The doctors and nurses continue to be charmed by his sunny disposition! They will start checking his immune system 7 days after the transplant, with the big test at 21 days after transplant. The best case is that the donor's bone marrow grows and Robert's original bone marrow doesn't. Please continue to pray for this to happen!!! On another front, Evan has been having tests done as well and has shown a VERY SLIGHT biochemical change on his MRS (similar to an MRI). The doctors feel that the change between the MRS done in Florida in March and the recent one could be due to the fact that the machine there in MN is much newer and more powerful. Please keep Evan in your prayers as well. I'll keep posting updates as I get them. Kelly wants everyone to know how much she and Joe appreciate all the emails and letters, good healing thoughts and most importantly your prayers. Laura - Thursday, July 26, 2001 at 12:27:01 (GMT) Today is July 20 and Robert will be receiving his Bone Marrow Transplant at 12:00 midnight Central Time (1:00 am in Florida). He had his chemotherapy treatments on Saturday and Sunday; Radiation twice daily on Tuesday, Wednesday, and Thursday; and one dose of radiation on Friday. Joe says he has not suffered ANY side effects from any of these treatments and is chipper and active, making jokes and enjoying all the attention he is getting from the nurses. He has not lost any of his hair and is, as Joe puts it, "typical Robert". Please remember to pray tonight for Robert. The BMT procedure itself is very similar to what Robert has already been experiencing the past week. He has a line in his chest through which he receives his various treatments. They will switch the IV bag to the donor bone marrow for his final infusion tonight at 12:00 CT. Joe says that it is a very good sign if Robert continues to be his happy playful self for the next two weeks. Please ask everyone you know to pray for Robert's complete recovery. Laura - Friday, July 20, 2001 at 15:49:34 (GMT) Hi all, Robert's transplant date has been postponed for three weeks. Evan has contracted shingles. Because Robert has been exposed, the doctors feel its best to postpone the transplant until they are sure that Robert doesn't have it. The new dates are as follows: July 13 - Robert is admitted to the hospital and his line is inserted. July 14 - Chemotherapy starts. Robert must go to the bathroom every 2 hours to prevent a harmful buildup of chemicals in his bladder. July 15 - Second and final day of chemotherapy. July 16 - First day of radiation treatments begin. twice a day. July 17 - Second day of radiation treatments, twice a day. July 18 - Third day of radiation treatments, twice a day. July 19 - One final radiation treatment in the morning. July 20 - Bone Marrow Transplant. I'll keep posting updated information as I receive it. Joe is having a time with his laptop connectivity, so I'll be playing go-between for now. Evan has been admitted to an ALD study there at the University, so he has been going through neurological tests as well and will have an MRS tomorrow. Keep those prayers coming! Laura - Thursday, June 21, 2001 at 15:48:15 (GMT) Hi everyone, I just spoke to Kelly and got their new address in Minneapolis, which I have added to the website. They've rented a small apartment close to the hospital and have been busy getting settled in. Robert has had his pre-transplant tests and everything looks great! He had not had any changes since their visit in March AND the doctors said he was the BEST Bone Marrow Transplant candidate that they've seen in awhile!!! Kelly told me that they've been exploring the area as much as they can before the transplant and following recovery / isolation period. The boys enjoyed a day at The Mall of America amusement park, ventured up to Canada for the day, and even saw a moose! She's enrollled Evan in a half day school program at the hospital and he will be able to visit Robert everyday. I'll be posting Robert's transplant schedule on the website shortly. Laura - Monday, June 18, 2001 at 20:31:22 (GMT) Kelly, I just heard back from the donor center and we are all set. The outpatient evaluation is as we had tentatively planned. We will need to have you here in Minneapolis to start the work up on 6/11/01, we will plan on admitting Robert on 6/22/01 and the actual transplant will be 6/29/01 I left this message for Joe at work as well. You were asking about the donor: the only information I am allowed to give you is the bare bones. he is a 34 year male donor. Stacey Stickney Ferguson, the social worker, will now be in touch with you to help with lodging here, etc. Kelly - Thursday, May 17, 2001 at 11:57:41 (GMT)
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