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Saturday, March 31, 2007 10:10 AM CDT

Happy Birthday Elijah!!!!!! I know it has been a while since I have updated. Dante and I got moved into our new home the end of February we are doing great. We are off to the beach to send Elijah some balloons for his birthday. I cant believe my boy would have been seven this year I try to imagine what he would be like but cant so i will continue to remember him as I can and love him will all my heart.I will take some pics and update the photos in the next couple of days. Love to all of you who still think of us and continue to keep us in your prayers. Love Jonel

Monday, September 11, 2006 10:32 AM CDT

Well we made it to Florida it will still be a few months before I am up and running right now Dante and I are staying with my parents while I look for work. My goal is to have us into our own place before christmas. I will update again when I have a chance to get to a computer. Love Jonel

Thursday, August 17, 2006 10:24 PM CDT

We have been very busy since my last update sorry for the long gap in updates. Summer was fun I fractured my ankle july 4th but it is all healed now. We participated in the 5th annual race for Virginia and friends Elijah was honored this year the monies raised are donated to the pediatric cancer research at childrens hospital. Dante and I are moving to Panama city Florida in two weeks we are very excited it will be a while before i can update again but as soon as we get settled i will tell you all about it . My email will stay the same for now. Thank you for checking in on us love jonel

Saturday, April 8, 2006 2:44 PM CDT

My beautiful boy today has been one year since you have left us to be with Jesus. I miss you so much it hurts. We took your brother on an easter egg hunt today and he wanted to remember you by doing something you enjoyed he chose to go bowling so Mom, Dad, Dante,Charlie,Aunt Audra, Uncle Josh,Krissy,Kate,Wendy, Amani,and Diannee spent the afternoon bowling we did have fun. Love Mommy


I wanted to say Thankyou to those of you who remembered our family today. It means a lot to me I will try and write later tonight about the rest of our day

Friday, March 31, 2006 6:46 AM CST

HAPPY BIRTHDAY TO YOU!!! HAPPY BIRTHDAY TO YOU!!!! I love you my beautiful baby boy. YOur brother has a nice day planned in honor of you birthday. I will update how it goes tomorrow Love mommy

Thursday, January 5, 2006 11:26 AM CST

Hi Baby boy, I know it seems like it gets longer and longer between my postings. I don’t really know why. I try to write I have so many things I want to say but my mind just shuts down when I try to let them out. I went back to the clinic on Tuesday for the first since you died. It was very hard for mommy but after I went I was glad that I finally went. It was nice to some familiar faces. I donated some of the games you got for your last birthday to the clinic I hope some of the kids enjoy them. We made it through our first set of holidays without you. It was very hard but they have passed. We took Dante to see WWE raw live wrestling last week. Boy was excited. Baby Josh is a year old now he started walking about a week before his birthday. Dante and Charlie are doing well they both are doing very well in school. You’re always on theirs minds they miss you too. The guidance counselor at their school has started a grief group at school, which has helped them a lot. I am still doing my grief therapy also it really does help me to be able to let my pain out. I think I would go nuts if I try to hold it all in. I am so afraid that everyone outside of our family has forgotten about you. It is important to us to keep your memory alive. You were such a joy to us. Sure you were stubborn and ornery but you made mommy whole and now there is this whole that I can not seem to fill no matter what I do. I remember how worried I was when you were born that I would not be able to give you and your brother all that you needed because it was such a transition going from one child to two. The transition of going from to two children back to one is so much harder. I try to be strong but sometimes I don’t feel like I do a very good job at it. Friends don’t call anymore. There are some family members that check on us regularly but there are so many that after almost 10 months still have not even acknowledged that you have died. I try not to be resentful toward them but that hurts it makes me feel like they did not love you or your brother and I. We are still trying to figure out what our new normal is I wonder if we will ever figure it out. But I do know that all we can do is take baby steps towards our future. I don’t know what to do will all of this love I still have inside of me for you. I don’t want it to go away but it does feel like it is just there and I feel like I should something with it. Does that make sense? I have decided that I am going back to school in the fall. I want to get into social work I am leaning toward the bereavement and grief side of it but we will see. I am going to go for now. I love you always Love Mommy

Wednesday, November 9, 2005 12:02 AM CST

My dearest Elijah, I know it has been a while since I have written but not a moment goes by that your not on my mind. As Thanksgiving approaches mommy misses you more and more. I cant get out of my mind how good you were doing last year at this time when mommy still had hope that we were going to beat Neuroblastoma. I have begun working on your brothers letter for 2005 and it hit me that you will never read the letters I wrote you the first 4 years of your life. I miss you more and more with each passing day. I am having a hard time feeling Thankful this year. Yesterday was 7 month mark since you have left this earth. I wish I could turn back time and we could of had more time together it just was not long enough. Dante is doing so good in 2nd grade he got his first report card he got straight A's. I Know you would of done good in school too. Buddy mommy loves you so very much. I'll miss you forever. Please dont forget to pray for all of the families that this disease touches. I will try to update more often it is just that it takes a lot out of me right now. Love Jonel

Wednesday, October 5, 2005 7:35 AM CDT

MY MOM IS A SURVIVOR

My mom is a survivor, or so I've heard it said.
But I hear her crying at night, when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.

But like the sands on the beach that never wash away,
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others...a smile of disguise.
But through Heaven's door, I see the tears flowing from
here eyes.

My mom tries to cope with the death to keep my memory alive.
But anyone who knows her, knows it is her way to survive.
As I watch over my surviving mom through Heaven's open door,
I try to tell her that angels protect me forever more.

But I know that doesn't help her or ease the burden she
bears.
So if you get a chance, go visit her and show her you care.
For no matter what she says, now matter what she feels,
My surviving mom has a broken heart, that time will never
heal.

Tuesday, August 30, 2005 9:54 AM CDT

Sorry it has been so long since I have written an update. I have been having a hard time writing. Thank you, to those of you who still think of us and stop by to see how we are doing and leaving us a brief message. Please say a few prayers for a few of our friends. Jamie "Beebo" is going to soon be gaining his angel wings please pray for a comfortable and peaceful transition for him. Comfort and peace for his family. Our buddy Isaac who will be going to CHOP for MIBG therapy to hopefully get rid of his neuroblastoma once and for all. Cater who's disease will also go away. And for my special friend gretchen who's son Alex he is also an angel and he should of started kindergarten today. Carrie who husband is fighting this disease also. And all of the other families in the world who are fighting, have fought, or are about to fight this damn disease. Love Jonel

Hello my beautiful boy, I know I have not written in awhile but I know you hear me when I talk to you. Today you should of started kindergarten. Mommy is very sad that I did not get to take you to school this morning I know you were looking forward to being a big boy and going to school with brother. You have been on my mind more than usual. I miss you so very much. Your brother started 2nd grade this morning he was very excited to being going back to school. I can not believe that it has been almost 5 months since you went home to Jesus. I know this is short but mommy will write again very soon I promise. I love you more than words can say. Until we see each other again you will always be in my heart. Love mommy

Tuesday, June 7, 2005 11:06 PM CDT

Hey baby boy well 2 months ago tonight was the last time mommy was able to read to you or played your favorite songs. I wish that night could of lasted forever. I miss your beautiful face Dante called me tonight he is with Daddy they are both missing you very much also. Mommy has been lost with you and Dante. I have not smelled you throughout the house in a few weeks that makes me long for you even more. It has only been 2 months yet it feels like forever ago since I have kissed your sweet face. Is Bunny with you? (his hamster). Mommy woke up last weekend and bunny had died I was so upset because I felt like I lost another part of you. Shade is keeping me company though we have been taking a lot of walks trying to get the days to faster. Brother will be home next Monday he is having so much fun with Daddy. I am off work until the new school year starts but I am going to start a summer babysitting job next monday. I went grocery shopping for the first time since you went to live Jesus and the people at the store probably thought I was crazy. The plums finally came in I know how much you loved them. I still have not brought my self to buy bacon and eggs yet that time will come someday. I cried the whole way through Wal-Mart I automaticaly started getting all of your favorite things and then I remembered they would not be eaten because you are not here and had to put them back I kept the plums and the gaterade though. I love you buddy. I wish you could come see me in my dreams just so we could spend some time together. This hurts soo bad. I try to be thankful for the time GOD gave us to be together but I can not help to feel like it just was not enough. I know I promised you I would be sad and I am not most of the time. There are times when I just can not help it and I hope you understand that. I miss you I dont think I could say that too many times. I love you Elijah David until we are together again we will always be in each other hearts. I miss you I will write again soon. Love mommy

Thursday, May 19, 2005 9:59 PM CDT

My beautiful boy. I am having a night of missing you so I thought if I wrote to you it may help me feel better. Mommy got a job this week. Dante misses you so much but I bet you know that. He wrote you another song tonight. I wish you could come back to us we feel so lost without you. Baby Josh is getting so big and he reminds me so much of you it hurts me sometimes. I want to hold you so bad. I want so much to understand why you could not stay with us. I know I promised you I would not be sad but it is really hard sometimes. I miss your big smile and those eyes your laugh who am I kidding I miss everything about you. I know we will be together again one day but that seems like eternity from now. Mommy is going to take a few of the gifts from your party and donate the to the clinic they are all still sitting in the dining room unopened where you left them. I think that some of the boys and girls who have to be at the clinic all day would enjoy them. Summer is getting close now and I cant help thinking about all the plans we had before you would of went to kindergarten in the fall. why couldn't this all be a bad dream and we could just wake up. I am gonna go for now the tears just will not stop. Always thinking of you and loving you until I see again. Love mommy

Tuesday, April 26, 2005 8:04 AM CDT

Elijah, Mommy still can not believe your with GOD now. I miss you so much. I long to hold you even for a second. Everything seems like it happened so fast I think I am still trying to process everything that has happened. If it was not for all the pictures of you I would wonder if the last five years even happened. Dante misses you so much I am sure you hear him talking to you all of the time. I wish that we could of saved you it hurts me so bad that the only way we could stop the hurting was for you to be with Jesus. I will write again very soon. Mommy loves you

Tuesday, April 12, 2005 9:03 PM CDT

Our beautiful boy.
When will our tomorrow be?
We know you were too special for this world.
So brave to endure all that you went through while Mommy and Daddy were trying to make you better.

It was the hardest decision we will ever make but we knew we had to set you free.
We are glad there will be no more pain.
We pray now there is only joy and happiness.

Today our hearts are heavy and broken.
Yesterday we were afraid and unsure.

When our tomorrow comes we know it will be forever.

We love you, baby boy.

Mom and Dad

Saturday, April 9, 2005 8:22 AM CDT

Thank all of you for the prayers. The address of the funeral home is 127 W. Jefferson st po box 1522 Butler Pa 16003 You can view Elijah obit at youngfuneralhomes.com The services will be Monday friends will be recieved from 7-9 april 11 and a memorial service will be held at 9pm Monday. Love Jonel

Friday, April 8, 2005 7:49 AM CDT

My heart is broken as I write this update our beautiful son Elijah David King went home to the LORD at 6:30 am this morning. I will update with funeral arrangements as soon as we know the day of the service. Thank all of you for your prayers. Love Jonel

Thursday, April 7, 2005 2:24 PM CDT

Thank all of you for the prayers. Elijah is still hanging on. The seizures start every four hours so we have turned down the pain meds and we are using more phenabarbitol he has not been able to communicate with us since the the morning after the seizures began. He looks very peaceful and we have been reading him stories and telling him how much we love him and that he does not have to fight anymore he is just not ready to let go. My cousins have been wonderful at keeping dante busy. Elijah's dad is here with us and has been a huge help. I just keep praying for my baby to go home to Jesus and that breaks my heart but I dont want him sufferung anymore. I will try and update again soon Love to all of you Jonel

Wednesday, April 6, 2005 2:35 AM CDT

I just wanted to let you all know what has been going on. Yesterday Elijah began having seizures about 330 am. we finally got them under control we were using clonopin every hour but about 8 pm last night we were able to give him a meag dose of phenabarbatol(spelling ?????) he has been resting pretty comfortably since then. He lost his eyesite some time late yesterday afternoon. My heart feels like it is been ripped out of my body. I dont know how we are going to make it through but I keep praying for GOD to help us. Please pray that my beautiful boy does not suffer to much longer as much as i am going to miss him I want him to go home to Jesus so he does not suffer any longer. I need to get back to my baby boys side I will try to update agins soon. Please pray for peace and comfort for all of us Jonel

Saturday, March 26, 2005 7:13 AM CST

Thanks again for the prayers and stopping by to see how we are doing. We spent 5 hours at clininc Thursday get Elijah comfortable we switched him over to a PCA pump of diladid we also switched him over to complete hospice the trips to pittsburgh are just to for him. Dr Egler says we are down to weeks with our beautiful baby. I cant believe this is happening so fast. Please pray for peace and comfort for my baby I dont want him suffer he has already been through so much more than any child should have to go through. I am going to close for now and go back to cuddling I just wanted to let you all know what is happening I will try and update again soon Love Jonel

Wednesday, March 23, 2005 7:59 AM CST

Hello everyone Thank all of you for the prayers. I am finally back online. We had a wonderful time on Saturday. I will be adding pictures of the party in a few days. Elijah was a little overwhelmed when he first got to the party. The Shiners clowns were there (5 of them). They were wonderful. I wanted to thank my cousins Kristy and Dawn for all of their help with the games and party favors. My neice Leena for singing a beautiful song to Elijah I know it was hard for you to hold in your emotions while you sang but you did a great job, My sister in laws Rayna and Adrienne for cooking most of the food, My sister Audra and Tina for the decorating, My Aunt Patti and Gram for making the macaroni salad, Lynn for the bread and butter, Gramma PJ for the apple pies and Rigatoni, My Aunt Char from California for the birthday banner she made for Elijah, My dad's friend Gary for the soda,And Walmart for donating the chicken. Thanks to everyones help Al and I were able to focus on Elijah and visit with everyone. Elijah had a lot of fun he even got out of his recliner a little while to dance for a few minutes. He spent the next two days in bed but it was worth it. He pretty much sleeps 19-20 hours out of the day anymore but we do enjoy the hours that he is up and awake. He does not eat too much these days and he drinks even less. We do seem to have a good handle on his pain he seems to very comfortable. It is just so hard to believe that a month ago if you did not know ELijah was sick you would of never known. We go to clinic on Thursday. I am afraid the trip is going to be to much so I dont know how often we will be going after this. We met with the hospice team this week his nurse seems very nice and very willing to help. The social worker was wonderful. Dante seems to be doing a lot better (Angel Kay's)Aunt lori thank you very much for your message to Dante it really helped him alot. The boys dad has been here a lot this past week and that has helped so much. I still dont know how I am feeling about all of this I think I am still numb but in my heart I know we made the right choice for ELijah. We did go get pictures taken a few weekends ago they will be in on Saturday I can not wait to see them. I am going to cuddle with ELijah I will update again soon. Love Jonel

Monday, March 14, 2005 1:04 PM CST

Hello everyone thanks for the thoughts and prayers they really help me. Sorry I have not updated all week I am having problems with my internet connection (it only works when it wants too) the cable company is supposed to be out today to get the problem corrected. So how are things going. Elijah is sleeping alot the nurse seems to think his pain meds to need to be adjusted because he is sleeping so the pain doesnt bother him as much this morning I asked him if that was why and he said yes so his evening dose will be adjusted and hopefully tomorrow he will want to get up and move around. His party is this weekend and I hope we dont have to cancel but if he is not feeling better there is no sense in having it. He doesnt really want to go downstairs and no one is allowed in the bedroom except for me. When he is awake he does not want anyone to talk to him. I just wish he would want to play just a little bit. He has always been such an active guy. Poor Dante does not understand he just want to be with his little brother and Elijah wants nothing to do with him. Everyone stops over to see Elijah and they have been bringing him little things and Dante is feeling left out. He told me yesterday that no one likes him any more and all they care about is Elijah. I have tried to help him to understand but at 7 years old should he be able to? I did sit down and explained to Dante that unless GOD blesses us with a miracle his brother will not survive. He took it hard but I was glad that he did show emotions and that we were able to talk about his feelings. I am so worried how he is going to handle all of this. I worried how we are all going to handle this. Elijah said to me the other day who is going to take care of me in heaven my parents and my brother will not be with me. Then he told me Dante is going to miss me ya know. I told him there are alot of angels who will take care of him until we can all be together again. Two years ago today Elijah was diagnosed with Neuroblastoma. I really believed that we would beat this monster. As far as myself I dont really know how I am. I did start counseling last week so I hope that will help. We will be meeting Elijah's pallative care nurse tomorrow. I still feel like this is on big nightmare and someone is going to wake me up any minute. (Boy do I wish that were true)I am going to close for now while I still have a internet connection. I will update again soon. Love Jonel

Tuesday, March 8, 2005 8:14 PM CST

Hello everyone It breaks my heart to write this update but I know we have made the right choice for Elijah. Friday we decided to stop treatment. He woke up with a black eye and a new lump on his forehead.It was really affecting his quality of life he was so sick for the temador and in his four year old mind he could not tell which pills were making him sick so he refused everything thing including his pain meds. We got together as a family and decided that we did not want to waste whatever time we have left being with Elijah chasing something that does not exsist. We are having a "celebration of life"/birthday party for Elijah on the 19th of March. His Actual birthday is March 31st and he will be 5 years old. He is still refusing to take anything by mouth so he is recieving his pain meds through a pump. He has talked so much latley about dying and GOD calling him home that I know the things Elijah has said to us were a major factor in our decision to stop treatment and bring him home to "live". I have gotten more kisses, hugs and I loves yous in the last 5 days that I can ever remember. Today all he wanted was for me to hold him needless to say I did not get much done around the house but thankfully my parents have come up from Florida. I am going to go for now I will update again soon. Please pray for peace and comfort for all of us. This SUCKS sooooo bad. Love Jonel

Saturday, February 26, 2005 4:51 PM CST

I have been trying to write this update for the last 4 days. Sunday we took Elijah to the ER for uncontrolable pain. We spent 4 days in the hospital. We were able to get his pain under control. Then we began investigating where the pain was coming from. Elijah has had more disease progression. He has lesions on his skull and the left orbit. We add the temadar this evening as per his phase 1 study. So please pray that this is what we need to finally kick this monsters butt. If the temadar does not help we have decided that we will discontinue treatment and enjoy whatever time the LORD lets us have our baby boy. I have so many thoughts running through my head right now I am going to close before I start rambling. Please pray that this chemo helps Elijah. I will be in touch soon

Wednesday, February 16, 2005 1:32 PM CST

Hello everyone, Not much to update. Elijah continues to do well with the drug. We will be adding the second drug on the 27th of February as long as the bone scan on the 25th does not pick up any disease progression. We had a bad week last week with pain in his left thigh and had to double his dose of pain meds but the pain went away as quickly as it started so I am hoping he hurt it somehow. He did have an X-ray which came back normal :). For Valentines day I took they boys to the movies we had a great time. I will have to remember to take a blanket for Elijah the next time we go he was chilly. I will update next week after the bone scan. Please dont forget to pray for all of the families affected by this disease. Also checkout the link for Lunch for life. Give up lunch to help save a life. It really is worth it. Love and prayers to all. Jonel

Friday, February 4, 2005 7:29 PM CST

Well I finally got my computer back online so I will be able to update more often. The study opened and Elijah got in he started taking the OSI-774 last Saturday he seems to be doing well with it. I was worried he would not take it but with a little complaining he is doing a great job. I am so proud of him. He has gotten quite tall in the last 2 months and after 2 years of wearing the same size shoe we bought new shoes because we had to not because mommy was tired of looking at them. I am going to go I will update again very soon. Just want to leave a quick note and let everyone know that Elijah did get in on the study and things seems to be going well so far their seem to be very few side effects bothering him. On the 29th of this month we will add the 2nd drug which is 5 doses of temoliziode (unsure of the spelling) it is also call temadar. He will take the OSI-774 everyday as long it at least keeps the disease stable. I will update again soon. Love Jonel

Wednesday, January 12, 2005 9:11 AM CST

Elijah had scans on Monday. He has been having pain and night sweats so we decided to do scans a month early. I am so glad we did. His CT scan is still the same which is good news but his bonescan showed a new bone lesion on his right hip and a possible new lesion in his left orbit area. So we have to do an MRI to try and determine if it is infact neuroblastoma. We have a meeting on Fri Jan 14th to discuss further treatment options. I know this news could of been so much worse. But I am terrified of what all this means. I try not to think about it but how can I not everytime I look at my baby boy I just want to grab him and run as fast as I can hoping we could out run this damn disease. Overall Elijah seems to be doing well. He is such a special little guy. We are almost all settled in with our new living situation (at my sisters house). Elijah and Dante now have a new baby cousin his name is Joshua he was born on December 27, 2004. Elijah is so proud of the baby. He wants a baby brother or sister but mommy just wants Eli to be her baby. I added a new picture of Elijah holding the baby. Dante continues to do well in 1st grade. He has adjusted very well to switching schools making new friends. Please continue to pray for all of the families that are fighting, have fought, who have won, and especially those who have lost to this damn disease. Love to all of you. I will update as soon as I know what our next step is and the MRI results. Jonel

Monday, December 6, 2004 8:00 AM CST

It has been quite sometime since I have last updated. Elijah is doing well he will be beginning his 6 round of chemo. We have had quite a crazy month. That is the main reason I have not updated for so long. My grandfather was very ill and he gained his angel wings at 6:30 am on Thanksgiving morning. I am so thankful he is no longer suffering. Dante and Elijah have seemed to deal with it pretty well they have had lots of questions. We knew he was making the transition from life to death. So I was able to let the boys spend a lot of time with him. When he got to the point where he could not remember them I was thankful they were able to have said good bye. I do not know what the plan of action is for Elijah. The cytoxin/topotecan seems to be doing well for him. I dont know if it is going to continue this way but I pray it will. Both the boys are doing well in school and they continue to love it. I can not believe the year is coming to an end. I am still so afraid of what the future holds for us but I do continue to have faith that whatever GOD's plan is we will be OK. Thanks for checking in on us. Please don't forget to pray for all the families that hurt because of this disease. Love to all of you Jonel mom to Elijah

Wednesday, October 13, 2004 4:19 PM CDT

Just wanted to give a quick update about Elijah. His counts were finally up to start chemo so he began his 4th round of cytoxin/topotecan on Mon. He handles the combonation pretty well. He does sleep a little more often during his 5 days of treatment. But that does make for a happier Elijah. He is loving headstart more with each passing day. Dante is still doing well in first grade. They are both getting in to watching football with their dad. It was hysterical the other day ESPN was on (all day I might add)and everytime they went over the game hightlight from Sundays games. ELijah was cheering and clapping and I could not get him to understand that they were recapping the games lol. Got run we are going to my sister in laws for dinner. Love to all you and do not forget to pray for all the families affected by this disease. Jonel

Wednesday, October 6, 2004 1:02 PM CDT

I know I keep saying I am going to update more often and then I don't and for that I am sorry. It just seems like the days and weeks get the best of me. Elijah is loving headstart which I am so thankful for. He have yet to begin round 4 of his chemo his counts are taking a long time to come back this time. We had to cancel his bone marrow aspirations due to low counts. Elijah is having leg pains again so we have decided to do another round of chemo before they are checked. He did have his CT Scan and it came back good it even showed improvement to the nodes in his groin. I am very Thankful to at least know that the chemo has worked on something and I will continue to pray that his bone marrow will clear. Dante is loving 1st grade and so far doing very well this school year. He wanted to play football this year but did not tell me until after sign up was over. So I told him he could play next year. Elijah is looking forward to the spring he wants to play T-Ball. With the boys both off to school during the day I have been trying to keep myself busy. I wanted to go back to work but our social worker at the hospital did not think that was such a good idea due to the fact of lack of flexability. So I have become an AVON representative. I am also looking into to doing medical billing from home. Elijah is excited that the weather is getting colder because he can wear his snow boots again. He wanted to go out and play the other day so he puts on a tank top, shorts,jacket and his snow boots. I was laughing so hard that I could not even make him change his clothes. I just let him go out and play. Again I would like to thank those of you who check it on Elijah. Please pray for the families that are affected by this disease. Love to all of you Jonel

Friday, September 10, 2004 6:55 AM CDT

Sorry, it has been so long since my last update. Things are going well Elijah is currently doing his 3rd round of cytoxin/topotecan combo. He seems to be responding very well to this chemo. Elijah started headstart on Wed. he really seems to be enjoying spending the day with other children his own age. Dante started first grade on Tues. he really loves school and I hope that will continue through his school years. Elijah will be having a CT Scan and Bone marrow aspirations done toward the end of Sept. to see how well he has actually responded to this chemo. I want to thank all of you who have been praying for Elijah and all of the other children and husbands who are fighting this monster. God Bless all of you. I will try to update a little more regularly. Jonel

Monday, August 9, 2004 9:15 PM CDT

Elijah began his second round of cytoxin/topetecan today. He seems to being doing pretty good he has not had any complaints since he finished the 1st round so I am praying that means it is working. I belong to an online support group for families affected by neuroblastoma. And just this week we lost two precious children to this disease. So if you would please say a prayer for Alex and Simon's families I can only imagine the pain and grief they are feeling. I try so hard to stay positive about Elijah's treatment but sometimes it is so hard when I know of so many children that have been made angels because of this disease. Everyday my heart breaks for those families and then I wonder will my Elijah become an angel. I think the not knowing what the end of this journey will be is the worst. So if you all would not mind take a minute to pray for all of the families that have children it treatment and for those angel parents also. I will write again soon.

Thursday, July 8, 2004 11:24 AM CDT

Hello everyone. Sorry it has ben so long since I have updated. I have been having a hard time bringing myself to write this update. We found out on the June 24 th that Elijah has relapsed in his bone marrow and there is some new lymph node involvement in his groin area. We started chemo on Tuesday of this week. We are doing it at home. Elijah is not feeling to good today. We had a rough night last night. Please pray that we will be able to get this beast back under control and that it will disappear forever. I will update again soon. Jonel

Friday, April 16, 2004 12:37 AM CDT

It has been quite a while since I have updated and I am sorry for that. Due to things that we had no control over Elijah did not make it to NY for antibodies. We decided to stay home and start an expirmental study. So we did all the scans and the results came back that they can not find any disease in ELijah. The doctors will not say that he is in remission but that this is great news and we should celebrate. So we are!!!!!!!!!!! Elijah is now taking accutane and has the worst mood swings I have ever seen. But thankfully he only takes it every 2 weeks. Elijah is doing really well. He celebrated his 4th birthday on March 31st. Thank you all for your prayers. I pray that the lord will bless Elijah with one of his mircales.

Wednesday, February 11, 2004 2:55 PM CST

Just wanted to give a brief update on Elijah. We made it to NY for scans all of which came back pretty good. We will be leaving on Sunday to go back to NY to begin antibody treatments on Monday.

Wednesday, January 21, 2004 9:40 AM CST

Hello everyone. Sorry it has been so long since I have updated. Most of you know we never made it to NY. Our flight was canceled due to the weather. So we decided to drive there and broke down 250 miles from home. We made it home safe and sound 3 days later. I am still waiting to hear when his appointment will be rescheduled. I was hoping that we would be leaving on sunday the 25th of January. We are going by train this time. Elijah is doing great. He is gaining weight, his hair is growing back, and he has really enjoyed the last month without treatment (or so he thinks anyway), we started him on accutane until we get to NY. But he does not know he is taking it so it is going smoothly for the time being. I will update again as soon as I know when we will be leaving. Again thank everyone for the prayers.

Friday, January 2, 2004 12:23 AM CST

Happy New Year to all!!!!!! Sorry it has been so long since I have updated. Elijah is doing great. He finished his radiation. We were approved to go to Memorial Sloan Kettering. Elijah and I will be leaving for New York on Tuesday Jan 6th. He is scheduled to have scans done January 7th, 8th, and 9th. Hopefully we will start antibodies the following week. I will keep you all posted. Again Thank you all for the prayers.

Monday, December 8, 2003 9:18 AM CST

Sorry it has been a while since I have posted. Things have been up in the air about Elijah's next phase of treatment. So I realy didn't know what to write. I figure it won't hurt to let everyone know what is going on. Radiation is going well he is almost finished with we has to miss two days last week because we all had the stomach flu so he will finish on Friday. We are still trying our best to get him to NY, but have run into some insurance problems. Seems that because Elijah has medicaid they will not pay for out of state treatment without having it deemed a medical necessity. So we are waiting to find out it if they are going to approve it or not. I am really praying that they do. But if not we will find some other way (I hope). I guess if nothing else we can take him to Philidelphia I have heard they have some wonderful doctors and treatments there also. So while we are waiting to see where he will be going we are trying to come up with something treatment wise to hold him over so his disease does not take over again. On a lighter note I took the Dante and Elijah to see Bob the Builder live this weekend. They had a ball I will be updating the picture page soon. We also had a snow storm this weekend. I bundled them both up Friday night and we went out to have a snowball battle. We had a lot of fun. Well that is all for now. I will update again as soon as I know where we are going and what the plan is. Have a Happy and safe Holiday.

Saturday, November 22, 2003 8:37 AM CST

Just want to a brief update on Elijah. His Bone Marrow results came showing tumor cells so it looks like this night mare will continue for a while longer. One of Elijah's oncologist has contacted Sloan Kettering in New York to see if Elijah is eligible for one of their studies called 3f8. So we will continue with radiation on Monday. He will also be starting accutane on Monday in hopes that it will mature the neuroblastoma cells. Hopefully we will hear back from Dr. Kushner (at Sloan Kettering)by Monday.Well that is all for now.

Wednesday, November 19, 2003 7:34 PM CST

Just wanted to give a quick update on how Elijah is doing. We have finally finished post transplant scans. I don't have all the results back yet. On friday Elijah had his broviak removed and the surgeon felt around the area in question and said he believes it is a hernia, so we will be doing further investigation into that area. Elijah finished his physical therapy and is doing much better. We met with the radiation therapist yesterday. He will be starting radiation on Monday Nov.24. He also had his hearing checked again and he will be getting a hearing aid for his right ear. Audiology also wants to keep a closer eye on the left ear right now his hearing on the L side is border line normal. Elijah is running around like any other 3.5 year old eating us out of house and home lol. He has gained 3 lbs in the last month. He has also been enjoying home based headstart program where the teacher comes to the house once a week. He really enjoys playing board games, cutting, glue projects, and drawing. Elijah and Dante are getting along really well. Well that is all for now I will update again on Monday and let you all know how radiation therapy went.

Thursday, November 13, 2003 4:51 PM CST

Just wanted to give a brief update on what is going on with Elijah. For the past week we have been doing scans to see if there were any changes after transplant. I do not have all of the results yet. The bone scan was the same as the pre transplant scans it is still showing slight uptake in one area of the spine and both hips. He had disease in these places at dx. but the doctors seem to think that the bones are still healing and that is why they are still lighting up. Let's pray that is why. The cat scan showed that the 4 lymph nodes have not changed. So he will also be getting radiation to those areas along with the orginal tumor bed site. We meet with the radiation therapist on Tues. Nov.18, 2003. The Cat scan also showed a possble hernia in the right groin area. He is going in the Operating room tomorrow so they with investigate that area, along with that his broviak will be removed they will leave his mediport in incase they want to do further treatment he is also having his bone marrow checked. We will be home tomorrow after he recovers. The echo cardiagram results overall were good but gave us something else to worry about.I don't know exactly what the number is in reference to but in the results they always give us a n the beginning his as at 47 it is now down to 35 if it goes below 32 he will have to go on sometype of heart meds. So we will praying for that to either stay the same or start to climb back up. I will make a brief post tomorrow to let everyone know how it went and to let you know what we find out about the groin area. Thanks to everyone for all of the prayers. Goodbye for now

Thursday, November 13, 2003 4:51 PM CST

Just wanted to give a brief update on what is going on with Elijah. For the past week we have been doing scans to see if there were any changes after transplant. I do not have all of the results yet. The bone scan was the same as the pre transplant scans it is still showing slight uptake in one area of the spine and both hips. He had disease in these places at dx. but the doctors seem to think that the bones are still healing and that is why they are still lighting up. Let's pray that is why. The cat scan showed that the 4 lymph nodes have not changed. So he will also be getting radiation to those areas along with the orginal tumor bed site. We meet with the radiation therapist on Tues. Nov.18, 2003. The Cat scan also showed a possble hernia in the right groin area. He is going in the Operating room tomorrow so they with investigate that area, along with that his broviak will be removed they will leave his mediport in incase theywant to do further treatment he is also having his bone marrow checked. We will be home tomorrow after he recovers. The echo cardiagram results overall were good but gave us something else to worry about.I don't know exactly what the number is in reference to but in the results they always give us a % in the beginning his % was at 47 it is now down to 35 if it goes below 32 he will have to go on sometype of heart meds. So we will praying for that to either stay the same or start to climb back up. I will make a brief post tomorrow to let everyone know how it went and to let you know what we find out about the groin area. Thanks to everyone for all of the prayers. Goodbye for now

Friday, November 7, 2003 8:18 PM CST

Our journey into this nightmare they call Neuroblastoma began on March 14, 2003. About a month prior to diagnosis, Elijah began having diarrhea, low grade fevers, and complaining occasionally of belly pain. I had a reasonable explanation for all symptoms (I thought). He was almost 3 at the time. We went away the weekend before Elijah was diagnosed, he was miserable the entire time. Monday morning I called his pediatrician and took him in to see her. He had strep throat we were told that sometimes when toddlers have strep throat it causes belly pain. After we left the doctors office we went to visit my parents. They were moving to Florida that day. The next morning when Elijah woke up he could not walk, move his head or neck. So off to the ER we went. We have a hospital about 3 blocks from our house. The doctor there automatically thought it was meningitis so he had them administer IV antibiotics. He then spoke to Elijah’s doctor and she wanted him transported to Children's Hospital of Pittsburgh. When we got to Children’s they first thought meningitis also, but did not do a spinal tap because the antibiotics were already given. But they did say they did not think that was it because they way he could not move his head or neck was opposite of someone with mengeistist. Next, they suspected that the strep had gotten into his blood stream and went to the brain however a blood test ruled that out. By now a puzzled team of ER doctors could not agree on anything they wanted done and told us that they had no idea what was going on but that we would not be leaving the ER until they figured it out. My response was good thing because we are not leaving until we know. Our day had started around 11:30 am. It was now around 7 pm. A surgeon was our next visitor, he told us he wanted a CAT scan done he was pretty sure Elijah’s appendix had ruptured. I was praying for my baby to be OK. Around 11 that night we finally went up for the CT scan. After the scan I had my sister sit with Elijah and went outside to call my husband I was gone about 5 minutes when I came back she told me the doctor was looking for me. So I was thinking it must be his appendix we are going for surgery. They came back in and told me to sit down. That is when I first heard the word Neuroblastoma. I can honestly tell you the first of what they said that night is a blur. He was admitted to the hospital and the next morning we met the oncology team. I really do not remember much of my first conversation with them. Elijah was now having test after test done to see how far the cancer has spread. Every test came back with more bad news at one point I asked them could they offer us any good news because I did not know if I could handle any more bad news. Our good news from diagnosis was that none of his organs had been affected. On Friday March 14, 2003, Elijah went into the OR to have biopsies of the tumor, bones, bone marrow, and to have a double lumen broviak (central line) placed for chemotherapy. The tumor was too big to be removed it was attached to all the main arteries in his back and wrapped around all the organs in his abdomen. The next morning we were moved to 8 North in the hospital, which is the pediatric oncology and bone marrow transplant floor. He began his first round of chemotherapy that afternoon. He has since had 6 rounds of chemotherapy protocol A3973. A complete (keep your fingers crossed) tumor resection. Been hospitalized three times for infection and neutropenia (SP?), which occurs because of his blood counts is low from the chemotherapy. One hospitalization in ICU for septic shock for those of you who know about septic shock it was pretty terrible. He has also had 16 red blood cell transfusions, double that amount of platelet transfusions, and 1 plasma transfusion. In September he went on his MAKE A WISH trip to Disney World. The whole family went my husband, Elijah’s 3 oldest siblings Channing 17, Chanelle 15, Albert 15 (twins) :), my husband’s children from a previous marriage. And our other son together Dante 5. And most recently he had a Stem Cell transplant. He is now 38 of transplant and doing pretty well. I will have another update soon this is getting kind of long winded. Honestly after going over the days leading up to diagnosis I am emotionally drained. I will be posting some pictures of our trip to Disney and the rest of our family soon.

Friday, November 7, 2003 5:25 PM CST

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