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 Hi this is my first web page so bare with me. I am a mom of 4 wonderful children. One girl and 3 boys. Their ages are 21,18,15 & 14. My kids are my world. They have always been wonderful children. Always been very healthy so I thought until something happened to my oldest son who is now gonna be 19 this month. On July 14,1997 my son Arthur, who at the time was 17 years of age had come home from work that night after working 8 hours complaining his legs were bothering him. I had told him to take a hot shower that maybe he had been standing on his feet to much and that could be the reason why his legs were hurting him. He had done as I told him to. Later that night after we had gone to bed and been sleeping for an hour I was awakened with the sound of my son Arthur screaming so loud and calling for me to help him. I ran into his room and all he kept screaming was,"mom help me, please help me". He was having muscle spasms in his legs. I put ice packs and hot packs on his legs until he had calmed down. I finally got back to sleep and it happened again, the screaming for help. It sounded like someone was murdering my child. It happened again 2 more times during the night. The next morning I got up and went downstairs to make coffee and called my friend to come over. Arthur came down the stairs and grabbed a hold of the stairs and started shaking and crying saying to me,"mom help me something is wrong". I put Arthur in the car and took him to the hospital where the emergency room doctor had done a visual check on him and came back to the room he was in and asked me if they could do blood test on him so I said yes. It seemed like we were there for hours before the doctor came back in and said to me,"your sons doctor would like to see you in his office to tell you the results of the test". So I thought well he is gonna tell me Arthur has lime disease so no big deal it is treatable. Not realizing that our whole world was going to come tumbling down on us. I got to the doctors office and he called me in a room and said to me,"your son is dieing from kidney failure", I told him that this isn't true and started crying. I went back to the hospital were Arthur was still at and told him about it. He started crying ,he was speechless I told him we will make it through this. We ended up taking Arthur to another hospital the next day that could deal with him being put on dialysis. The doctors there had told me the toxins were so bad in his system that if I hadn't got him to the ER when I did he would be dead. They had suggested getting my other 3 children tested so we did. My daughter who was pregnant at the time was fine, my 15 year old was fine and then they tested my 14 year old and told me he was in kidney failure to. It was like a nightmare, I just wanted to wake up from telling myself this couldn't be happening to my children. They have always been healthy and now I am facing the thought of 2 of my children in kidney failure. Arthur and Earl have been seeing doctors since then in Boston. Arthur was diagnosed with Senior Loken kidney disease and Earl was diagnosed with Lawrence Moon-Biedl syndrone. Arthur was on a kidney waiting list, he had been doing dialysis three days a week for 4 hours a day. Finally after waiting almost 2 years on March 3,1999 I was sitting in my dining room talking with my daughter when I recieved a phone call from the hospital in Boston looking for Arthur. I asked them what was wrong and Patti, the woman in charge of dialysis, says to me,"how soon can you get Arthur, here we have a kidney for him". With hearing that news I started screaming and crying. I told her I will have him there as soon as I could. So we got the ambulance crew in our town to take him to Boston for us, were I met him later. At 1 am on March 4 the transplant started. I couldn't sleep I was so nervous about all of this, worrying what if something went wrong, being a mom you worry about everything with your children. Finally at 9 a.m. the surgeon came out and told us everything went fine the kidney took and Arthur was ok. So he was taken to the ICU floor where he spent 8 days then he was moved to the transplant floor where he spent another three and a half weeks. With the ups and downs of the kidney possibly rejecting and getting his meds regulated it was hard on all of us. I am glad to say Arthur is home from the hospital now and so far everything is going great. My son Earl and I were told on Monday March 29,1999 that he will have to have a transplant asap. He had hopes on going to Florida this summer to spend some time with my family but now that has to be put on hold. The disease that Earl has causes blindness to. Earl has been diagnosed as being legally blind since he was 7 years old so life for him has been hard enough. Earl hasn't been able to do a lot of things that boys his age should be doing. He has always wanted to play certain sports that he is not allowed to play. Earl is a very bright and intelligent child. If it wasn't for his hearing he wouldn't know a lot of things that he does know today. I just thank god that our prayers have been answered for my children. With everything that has happened in the last 2 years it has been hard on the family. We just take our lives one day at a time now never knowing what is gonna happen for us the next day. I had for a long time since this has happened wondered if I had done something wrong while I was pregnant with my kids knowing that I had taken good care of myself and never doing drugs or drinking while I was pregnant. The doctors have told me not to blame myself for what has happened to my sons that it was something I had no control over. There our times that I still cry for what has happened to my boys knowing that I can't make them feel better when they are feeling ill. When we have our babies safe in our arms and we think they are healthy life could not be any better than that. When you don't know that your child has a silent disease and it hits you like a ton of bricks it feels like your whole world has come tumbling down. If there is anyone that knows anything about these 2 silent kidney diseases please let me know your in put about it through my e-mail at cj_01966@yahoo.com.
UPDATE!!!!!!!! Since I have done this web page Arthur has been in and out of the hospital twice now.I am happy to say so far he is doing great. The kidney is finally working better now.UPDATE!!!!!!!! Earl had a kidney transplant on Aug.19,1999 he came through his surgery ok at least we thought. The next evening on friday at 5:00p.m. he was rushed back down for emergency surgery where the doctors had to remove blood clots from the arteries going into the kidney. I almost lost my son that night. Earl came out of surgery and the surgeon had told me that we need a miracle because they were not sure that the kidney was even gonna work. Earl was taken back to ICU where he spent another 8 days he was also put on a breathing machine. It hurt me so bad to go up their to see my child laying there with all the tubes and IV's in him. The doctors had kept him sedated for 6 days so he didn't know anything that was going on. Earl was then moved to a private room where he spent 4 more weeks in the hospital I am happy to say he is home. Earl is getting better a little at a time but it is like I have told Earl we are gonna have to take life one day at a time. Earl can not return to school for sometime he will be tutored at home until then. He misses his friends at school. I want to thank all of my family and friends who have been there for my children and I. This year has taken it's toll on me with everything that has happen. People say to me how can you do it with 2 kids going through this I just keep telling them they are my children and I have to do it for them. I brought them in this world and I am responsible for them so I will always be there to help. People have said to me that they don't think they could do what I have done and that they couldn't handle it but if you love your kids then you can do it. I have been told that I am a strong woman but there are days that I just want to give up because it is very hard to go through this. My kids have always found away to make me smile even when I am so upset with all of this. I thank god that I still have my kids around. My sons father's, brother had donated a kidney to Earl and I will always be thankful to him for saving my sons life for the rest of my life. My son Arthur is now 6 months post transplant and is doing well he has had his problems but he is better now. My son Charlie who is 16 years of age has been a wonderful help to me he is only a child to me still, but since all of this has happen it seems to me that he has grown up more he understands what is going on with all of this. My daughter and grand daughter moved to florida in April. She has been calling and talking with me helping to calm me down through all of this. I miss them very much. I will keep the page updated as things progress with my kids. UPDATE!!!!!!As of October 29,1999 Earl and I were informed by his doctors that his kidney has stopped working he will be going in for surgery again on November 12 to have the kidney out. Earl celebrated his 15th birthday today. Earl will then stay on dialysises until another kidney becomes available for him. Earl is being put on a donor list it could take up to a year for a kidney to become available. If anyone is willing to be tested for this they can contact me at my e-mail address to get any information on how to be tested for this. UPDATE!!!!!!!I was tested for a possible kidney donor for my son Earl. I had been told I was a match for him.I went through most of the testing that had to be done and before the final 2 test were to be set up for me I was informed by the doctors in Boston that I can't be a donor now because I have kidney problems myself. I have to see a doctor in Boston on the 16th of February to find out what is wrong with my kidneys. This news hit me really hard knowing once again I can't help my child. Earl is in the hospital again for another infection in his chest catherter. Earl wants to have a fistula done on his arm so he can go to the beach this summer and hopefully nomore infections. Earls doctors in Boston have put his name on a hold for a cadavor donor because of his infections. This has been so hard on him at times he still tells me mom I can't take living like this anymore and all I do is give him hugs and tell him we will get through this some how we will make it.
UPDATE!!!!!! I found out that my kidneys are fine for now and I have been put on some medicine to supress my blood pressure in my kidneys. UPDATE!!!!! My younger brother has been tested as a donor for Earl an he is a match . He has one more test to go ( my brother ) before the date for the kidney transplant is set. I will keep you informed on the date of Earl's surgery and the results.To my brother Louis who is doing this donating to his nephew I will be eternally gratful to you for possibly saving my sons life. I feel as if god has sent Earl an I the miracle that we have been praying for since this all started. Louis I love you and always have loved you. Don't know how to say thank you for saving my sons life just know as your sister I really appreciate everything you are doing for us.UPDATE!!!!!!!! Earl will have a kidney transplant on Tuesday Feb. 13, 2001. Earl is so excited about this transplant. I know everything is going to go very well with this transplant.
UPDATE!!!!!!! Earl had his transplant yesterday and thank god it took. Earl's new kidney started working the second the doctors released the clips. Earl and my brother Louis are doing great. They were both up walking today and complaining they are hungry. I would like to thank each and everyone of you who have prayed for us and you are also in my prayers. I want to say many thanks to the dialysis unit at the Bostons Childrens Hospital. I want to also thank the team of surgeons and doctors at the hospital too.
For Kelly ,Arthur,Charlie,Earl and my granddaughter Justine, I love you all very much and will always be there for you. With all my love, Mom and nana
Louis you are an angel in my eyes that god has sent to us for help. We are close as it is being family but I know this has brought us closer. You have been through alot yourself with the lost of your beautiful daughter at a young age . I know she is watching over you and she is smiling down on you for what you have done for her cousin giving him a second chance in life. I love you....Love your sister Connie UPDATE!!!!!! It has been sometime since I have been on here to update my page. Since the last update Earl is doing great from his transplant. It has been one year now. Earl has had a couple of scares with possible rejection but it wasn't anything. Earl has returned to school full time again. I am proud to say he is an A, B student in school. Earl is doing so great we are planning a permanant move back home to Pensacola, Florida. My son Charlie has been right there for suppport of Earl and myself through this all. Charlie graduated from school last year and he has been pushing Earl to get his diploma also. Earl is looking really great . Earl looks so healthy again thank god. I will add new pictures of Earl and Arthur as soon as I get them. My brother Louis who donated the kidney that saved my sons life is doing great also. He is back to work and living a happy normal life also.
UPDATE!!! Since the last time I updated this page Earl is almost two years post transplant and doing really great. We have since moved home to Florida. Earl is enjoying his life again and having fun here in Florida. We are all very happy again. It seems like the cloudy days have gone from our lives. We know that there is always a chance of him rejecting his kidney in the future but for now Earl is happy and very healthy again. UPDATE!!!! On November 19, 2004 my son Arthur Passed away from kidney failure. Arthur was 24 years old. It has hurt me so much to know that he lost his life at such a young age. Arthur is missed by many loved ones. I am still having trouble accepting that my child is gone and I will never see him again. As for my son Earl we went to the doctor on March 13, 2005 and we were told that he is starting to reject his transplanted kidney. How much more can we take? I have always been told that God only gives us as much as we can bare well let me tell ya I can't bare anymore. I am having to stay strong for Earl and also deal with the greif of losing Arthur how much is a family suppose to take. I will keep updates on Earl as much as I can.
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