| Tuesday, January 11, 2000 at 12:03 AM (CST) Hi well tomorrow, we go for Jordyns' weekly check-ups. I believe I wrote last time that she would only have to go to Childrens' every other week, they changed their minds, we still have to go every wweek, so one extra triop, I am not thrilled, but I am going to talk to Dr.Dindorf and see if we can go to every other week, maybe she will let us, maybe not. Wither way we are over half way their so I am not going to coomplain. i would like all of you to pray for a little girl who has AML, and had her BMT a day after Jordyn, her name is Jade Pasley and she has relapsed and their is nothing medically they can do for her now, so she will be leaving us and soon becoming one of the many little angels. Please pray for her body to become healthy through one of Gods' many miralcles, and if not to give her family the comfort I am sure they need. Jade has a twin sister, who also had AML, but is now in remission, Jillian. i am sure that if she does pass, Jillian will feel her loss more than anyone, they say twins have a special bond. Thank you all for your prayers for Jordyn, she is doing well and is a happy girl. We finally have our own computer, so she is anxius to get on here and try it out! Keep praying for our little girl, adn for all the other families out there who have to fight cancer and all the other diseases out there in this world. Tuesday, January 11, 2000 at 04:53 PM (CST) Hi well great news on Jordyn. Her counts are wonderful! Her WBC is 5.3,ANC is 4187, and here plateletts are 226,000!She is on day +54, and they want her post transplatn bone marrow asperate and biopsy done Feb 2! They will do her skin biopsy and lip biopsy on Feb.8! Feb 26 is day +100.We are now just over half there! Jordyn was in a great mood while we were at the hospital, she was playing,teasing, and just being our little charming Jordyn while the nurse and Dr.Singer were in the room! It is so wonderful to see her putting her charm on them!:) Now on to a sad note, we went and checked on Christopher today, he is in the PICU, he is retaining fluid, and has a horrible rash, and has been vomitting bile. They think he could have Graft Versus Host stage 3 or 4, they are going to do a scope of his stomach,a nd that should give them a better idea. They are thinking that they may only have another month with him. Please pray for this little boy. While we were in his room all he did is cry, his eyes are swollen shut. It doesn't look good. I guess as his mom,Sonia, told me today, God is running short on Angels, and needs Christopher. Please go visit his web-site and give what ever support you can to him and his family. His link is at the bottom of the main page, just scroll down and click on Hargraves. Also,I asked all of you to pray for Jade pasley, I haven't heard how she is doing, but please keep her in your prayer list. i will end this on a bright note, John Manly, who we know from Walter Reed, came in to Childrens for his 2 nd BMT, will be getting released tomorrow! I heard that his counts are great! We are so happy for him and his family. Keep praying for Jordyn and know that we love all of you.Please add all of these wonderful children to your prayer list, and pass on their condition to as many people as you can and have them pray for all of them, including Jordyn, of course! Saturday, January 15, 2000 at 06:25 PM (CST) Hi everyone I have sad news to report, Christopher Hargrave has passed away.He recieved his ANGEL WINGS at 11:30 am .I was honored to be there with him and his parents,paternal grandparents,and the drs and nurse from Walter Reed when he passed away. Gary and Sonia have some very difficult days and weeks ahead of them and I ask that you pray and send them all your love.Christopher was a true fighter, he fought to the very end, but left this earth very peacefully.Parents should not have to bury their children,but that is where they are right now.They plan on having a funeral after his autopsy is completed,then they will have him cremated.They are doing an autopsy to find out exactly why he did die, if it was the HLH that came back or something else.For those of you who do not know, HLH is a rare blod disease, and they do not know a lot about it.So they hope that from the results from the autopsy they will find out more about this disease and hopefully learn how to treat the disease. Please keep praying for Christophers parents,Gary and Sonia and their family, they need all the support you can offer! Please keep Jordyn in your prayers too. They will keep Christophers web-site up until Jan 24,and then they are deleting it, so please go visit it, and sign the guest book.It is www.caringBidge.com/dc/hargraves Sunday, January 16, 2000 at 03:35 PM (CST) To all of you out there who read my message from yesterday, you know that Christopher Hargraves has passed away.If you did not see the post please go into Journal History and you can read it there.I do have the Hargraves address, so if any of you would like it please e-mail me personally and I will send it to you.i will not post their address,because who knows who may stumble across this page,and I want to respect their privacy. E-mail me at [email protected] Tuesday, January 18, 2000 at 01:33 PM (CST) Hi I just wanted to let everyone know that Christophers' funeral will be on Friday.They will be meeting with the Funeral Director to scheldule the time,I will update you on the time then.The funeral will be at: Hines-Rinaldi Funeral Home 11800 New Hampshire Avenue Silver Spring,MD (301)622-2290 For directions call them and they can give them to you. Tahnk you for all your prayers for the Hargraves. Jordyn is doing great,she will be at Walter Reed tomorrow,to get her IVIG.Please keep her in your prayers,along with Sonia and Gary Hargraves. Wednesday, January 19, 2000 at 04:33 PM (CST) Hi everyone I will first start off with day +62 BMT update.Jordyn went to Walter Reed today and recieved her IVIG,and is doing great!Her counts are wonderful. WBC-8.4 Crit-29.1 Hemoglobin-10 Plateletts-166 ANC-5900 She is feeling and looking great,the only kind of bad news she has is that Jordyn has developed some little bumps on the top of her head.We called Childrens and this is what we were told:there are more or less three possibilities:clogged hair folicles,a Herpies Symplex,or a form of GVH (graft versus host disease).If things aren't looking better or are worse we will take her in to Childrens on Friday. Pray that it's the clogged hair folicles. Now on the news of Christopher Hargraves funeral: It will be on Friday,Jan 21,2000 at 1:00 pm(1300).AT: Hines-Rinaldi Funeral Home 11800 New Hampshire Ave. Silver Springs,MD for directions call the funeral home at: (301)-622-2290 I know that the Hargraves would apperciate for all of those who are close to come and pay your respects to Christopher.Also,I have been asked about flowers or cash donation.I have talked with Sonia and she said they will need help paying for the funeral,and will take donations to be donated in Christophers name to the HLH foundation to help find out more about this disease that Chris fought so hard against. Thank you for all of your prayers for Chris and for Jordyn.i will keep you updated on the little bumps,pray they are nothing! Sunday, January 23, 2000 at 06:37 PM (CST) Hi everyone, well we took Jordyn to Childrens' on Friday to find out what the little bumps on her head were, and they were what I suspected: clogged hair folicles,aka in-grown hairs!Whew!!!! She is doing great, but because we took her to Childrens' we were not able to attend Christopher Hargraves Funeral.We were able to stop and give our condolences before hand and say our good-byes to him. They had many flowers there and they were all so beautiful, he was a very loved little boy,and I am so honored to have known him! Also for those who would like to send a donation to Sonia and Gary to help them pay for the funeral and other expenses here is the address: Sonia and Gary Hargraves c/o Parents and Children Fighting Cancer PO BOx 59694 Walter Reed Army Medical Center Washington, DC 20012-9694 Also if you would like to donate to the HLH foundation which is the disease that Chris had here is that address: Histiocytosis Associtation of America 302 North Broadway Pitman, NJ 08071 1-800-548-2758 www.histio.org Please make the donation in Christopher Hargraves name,THANK YOU! Thank you for all the prayers for Jordyn, we feel them everyday! :) Also the prayers for the Hargraves means so much,keep sending them! WE love you all and will update again on Tuesday after we go to Childrens on Tuesday for her weekly check-up there! Wednesday, January 26, 2000 at 04:20 PM (CST) hi well we didn't make it to Jordyns' check-up yesterday, because of the bad weather. I think we probably got over a foot of snow! I have the addresses for donations to go to Gary and Sonia Hargraves and to the HLH foundation. To send a personal donation to Gary and Sonia please send it to the following address: Gary and Sonia Hargraves c/o Parents and Children Fighting Cancer PO Box 59694 Walter Reed Army Medical Center Washington DC 20012-9694 If you would like to send a donatin in Christophers' name to help the Hisiocytosis, that would be wonderful, they are not funded by the Federal Government, so they depend soulfully on donatins. Histiocytosis Association of America 302 North Broadway Pitman,NJ 08071 call: 1-800-548-2758 e-mail: www.histio.org please send the donation is Christophers' name! Jordyn will go to Childrens' next Tuesday for her check-up and the following day, Wednesday she will go to WR for her IVIG and bone marrow biopsy and RFLP, the RFLP will tell us if hte donor marrow has taken and how much of it has taken, pray for 100%! Well, unless something comes up I will give an up-date next Tuesday on Feb.1,2000!Have a great week! |
| Jordyn after BMT...saying Goodbye to a Special Friend |
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