Elijah Kelley

Just wanted to update everyone on Elijah. He is doing so much better now. He still has about 3 1/2yrs. of treatment to go but he is sooo amazing! He never complains and is always positive. I think God for that daily! He continues to be an inpatient at St. Francis Childrens hospital for a week every other week and goes in for outpatient treatments every two days when at home. It breaks my heart to think of all he has been through and all he has yet to do. Thank everyone so much for all you have done for us. We will never forget it! We want to thank our family, they have been amazing. We love you very much! A BIG THANK YOU to the First Baptist Church for the love offerings. They have helped more than you could ever know. I haven't worked since Eli's diagnoses last Dec.07, I stay with him. Without everyones help I don't know how we could do this. I also want to thank the highschool for everthing they have done for Elijah. We were worried he wouldn't get to graduate because he is unable to attend school because the chemo lowers his resistance to infections. He has been doing his work at home and the school has been very supportive! Thank you guys for everything,you are all GREAT!! I also need to thank everyone for the support and prayers when Eli was in the intensive care unit. He had a terrible bleed in his stomach lining from the chemo and required twenty four units of blood and seventeen units of platlets and was in ICU for a week then another week on the 3rd floor. He was unconscious and bleeding profusly! I was frantic!! My sister in law and brother in law Larry and Carol Howell and our neice Lacie Autry came right over. Stu Henderson was soon there and they prayed with me for hours! I know God sent them to us. If not for them I don't think I would have made it. Thank you all, You are wonderful people!! We love all of you.He was doing good, although not eating or drinking well for about a week when we took him in town to see the christmas parade. I noticed the right side of his face was drooping some and he was complaining of head and face pain.Before we could get him to St. Francis hospital his rt. side of his face was paralysed! After a ct. scan, a MRI ,and a spinal tap his drs.came to the conclusion he had Bells Palsy due to swelling and inflamation to the seventh cranial nerve! And within days we knew why- the shingles! Because of a very weak immune system the chicken pox virus that lays dormant in your body (obviously in his seventh cranial nerve in his head of all places)a terrible case of shingles errupted on his face,head, and in both ears.He was very sick and in severe pain.He was in the hospital ten days got to come home one day then was back in because he could not eat or drink.He got to come home for christmas then was back in the hospital the 28th. His nurses and techs came in his room and rang in news years with us at midnight! He was in the hospital all but 5 days in december.Since the bells palsy his appetite has been VERY poor.He was admitted to the hospital for his sceduled round of high dose Methotrexate chemo the last of january for what should have been six days.With this type of chemo he gets it over 24hrs. then they give him what they call a rescue drug to help flush it through his system so his tissue and organs are not exposed to it longer than the reccomened time. They gave him the first rescue drug and drew a methotrexate level and it was through the roof, higher than ever, so the gave him another drug that was the strongest they had with no better results.His kidneys were beginning to fail and his drs. were talking dialysis soon. I cant discribe the fear and the anger I had, I thought dear god what else does my boy have to go through.After numerous phone calls to all over the world to different specialist Eli's dr. came in and said we had a choice dialysis and treating his system failures if and when they occured and hope for the best or there was this [experimental] drug they has had wonderful results but was not FDA approved or available in this coun try! She said she had it on stand by to be shipped asap as soon as we said go but there was only one problem. Since the drug was not FDA approved our insurance [ bcbs] would not pay any on it and one dose was 60,000.00 ! She wanted me and Phillip to talk it over and let her know as soon as possible.I ask her where I needed to go and I would go get it,[like there was ever any doubt about it] !! She should know by now I am one crazy moma, and my baby will have what ever he needs one way or another ! She called right away and the drug was there the next evening... all the way from the U.K. !!! No wonder she laughed when I said I would go get it.It was slower than expected but it eventually worked PRAISE GOD!!! Thank you thank you thank you Dr. Hum for tirelessly making all the calls working so hard and fighting for my boy,we love you! Each of Elijahs drs.Dr.Kirpatrick, Dr.Bourland ,Dr.Mohamed, and Dr. Hum are all wonderful . We are so blessed to have them caring for Eli.He was in the hospital 3 wks before his level was down enough and his kidneys improved enough to come home. He was so sick. The drs. said his kidneys failed due to poor nutritional intake
Got blood and platlets twice the following week as an out patient and some stern threats of a feeding tube if by his next visit he wasn't eating(he had lost 71 lbs.at that time) like his mom he had it to lose but not like this, enough is enough.That was the first week in march.He was admitted for another round of chemo, was in the hospital for a week, came home but this time wasn't eating hardly anything and was sick ALOT. He had clinic visits every other day where he received blood and platlets.The drs. were trying different meds for nausea and even a med to improve his appetite still nothing worked.Had a clinic visit two weeks ago friday and was scheduled to be admitted the following tues.for another round of chemo. but the dr. said his weight had to be up or atleast stable.Tues we arrived to check in for treatment but he had lost another 5lbs.! The dr. was very rough on him. All four drs. discussed it and they told us they could not safely give him his chemo. because his body couldn't handle it. They told him it would kill him if they did then they just flat out told him he was going to die without treatment or from malnutrition either way he was going to die! They were admitting him and putting a feeding tube in his stomach.Needless to say that took my breathe and I thought I was going to fall in the floor! But Elijah spoke up and actually argued with the drs. promising he would do what ever he had to do to keep from getting a tube in his stomach, that was the most I had heard him talk in a week!! As they were argueing I was praying to god for strengh and help ..and all of a sudden I felt peace.This was happening for a reason and he was gonna be ok.For once believe it or not I actually just shut up and didn't argue and told Elijah and the dr. that I would do what ever I could for him in any way but if he didn't try I was bringing him right back to the hospital for the feeding tube he was not going to die for any reason and I didn't want to hear that ever again. Well they called the dietician had a meeting and decided to give him two weeks to gain weight and improve his lab work and kidney function and wrote him a prescription for a supplement drink that has 350 cal. per 8 oz and told him to drink [and keep down] a min. of 6 bottles daily.Oh I forgot to say at this time his total weight loss was 98lbs.!! He had a spinal tap and received the chemo in his spinal fluid got two units of blood and one of platlets and was sent home.We talked on the way home and the dr. scared him enough that he started drinking the supplements that evening! He is determined not to get a feeding tube and to cont. his treatment protocol.It was a very hard first few days but now he just drinks them without being told and I haven't had any problem with him,.he is even taking his pills without me standing over him begging!!! Tues.clinic visit was GREAT ! He had gained weight,his blood work looked good, he didn't need any blood or platlets, and his spinal fluid came back clear !! He takes a form of chemo. daily called gleevec specifically for his type of leukemia and now they have him on two more types a day but he is doing great THANK GOD!! We go back in the hospital tues. for another check up and to schedule his next inpatient chemo..Please say a prayer all goes well. My boy is a true miracle. God has seen him through so much this year. His doctors call him their "Miracle Boy"!!! For those that dont know Elijah was diagnosed with a very rare form of leukemia called Philadelphia Chromosome positive acute lymphoblastic leukemia Dec.18th,2007. Nothing has been the same, but we trust God and know he is taking care of Eli and theres nothing he can't do and Elijah will be just fine.He has missed so much this last year and a half. He missed half his junior year and all of his senior year.Because he is on such a severe treatment protocol the drs.don't want him exposed to alot of people because his immunity is so low they said school is out of the question. Once again I want to tha nk his teachers and everyone at the school , Sherry has even called the hospital several times just to check on him. It always makes him smile.I am so sorry I am just now writing this, so many people has ask about him. I just haven't been able to hold a thought long, my mind drifts off in twenty different directions.I haven't been out in public much except for when they have ran me off a few times because I was getting on everyones nerves so I dont see many people, but please know that I think about everyone that has helped us every single day. This is every parents nightmare,but with the lord we will get through it.It has forever changed me. Please don't ever take anything or anyone for granted because your life can totally change in a min.I just have alot of guilt about not talking more and letting people know how much they mean to me and how thankful we are. I hope each of you are blessed over and over !!! This sun. april 19th is Elijahs 18th birthday!! Happy birthday!! You may be taller than me but you will always be my baby.Your family loves you very much and we are so proud of you !!!!
Once again Thank you all so much and please keep us in your prayers. Oh and thank you Lea and Brenda for the snacks you brought to the hospital (the chocolate did help)! Sorry it has took so long to write this. Been alittle crazy ha ha .I am terrible with a computer and I type with one finger! But please know I think about all everyone has done for us daily, and we love and thank you all so much. May God bless each of you!


Love you all,
Robbie Kelley & Family
Phillip, Elijah, and Katelyn

This page is devoted to Elijah Kelley, the Barnsdall teenager suffering from a rare form of leukemia called Philadelphia Chromosome Positive Acute Lymphoblastic Leukemia. He is the son of Phillip and Robbie Kelley. These postings are from Robbie, who doesn't go around computers!

Two funds have been set up to help the Kelleys with their massive expenses:

1. Elijah Kelley Benefit Fund, c/o First Baptist Churchm PO Box 939, Barnsdall OK 74002

2. Elijah Kelly Benefit Fund, Osage Federal Bank, c/o Pat Swearingen. PO Box 908, Bartlesville, OK 74005

HAPPY BIRTHDAY, ELIJAH

Every last student in Barnsdall schools, it seemed, was wearing red on Friday as they gathered near the football field to wish Elijah Kelley a happy 17th birthday.
Elijah, whose birthday is Saturday, has a rare form of leukemia and is undergoing intense treatment for the disease. He is the second Barnsdall High student in as many years to face a fight with cancer; in July, Nathan Cosby died after a long battle another form of cancer.
The school event on Friday kicks off a weekend of poignant fundraisers. On Saturday, the Assembly of God will have a fundraising breakfast for Elijah, and a garage and bake sale will follow at the old Runyon Theatre in Barnsdall, 5th and Main.
Also on Saturday: A fundraising crappie tournament at Copan Lake for Overflow Inc., the charity Nathan Cosby inspired, established to help children with cancer in eastern Oklahoma. Call 661-3033 for details about that.
At Elijah's event on Friday, elementary-school kids released more than 100 red and blue balloons to honor him, and wore red T-shirts that announced: "Elijah You Don't Stand Alone." The sale of the T-shirts raised more than $2400 for the Kelley family. Elijah's mom, Robbie, cried as she accepted the check from schools Superintendent Rick Loggins.

An update:

Elijah Kelley's 17th birthday is coming on on April 19, and his classmates, friends and relatives are planning two days of celebration and fundraising for the Barnsdall teen who is suffering from a rare form of cancer.
Barnsdall Schools will kick off the weekend on Friday with a balloon release, birthday cake and other activities. The school is currently selling Eli Kelley T-shirts – red ones, since that is Eli's favorite color – and proceeds will be donated to Eli and his parents, Phillip and Robbie Kelley, to help with vast expenses they are facing.
Elijah has been diagnosed with a rare type of leukemia that has a chromosome present in the blood called the “Philadelphia chromosome.” His treatment, which is quite intense, is expected to take at least three years.
On Saturday, the First Assembly of God will host a breakfast benefit for Eli, and others, including Andy Smith and Janet McCloud, are hosting a huge benefit garage and bake sale at the old Runyon Theater at 5th and Main Streets.
To donate garage sale or baked goods, call McCloud at 857-8407 or call Andy's Affordable Merchandise at 847-2163. Both numbers are in 918-land.

What follows is Robbie Kelley's first "post."

Thank You Thank You Thank You
Elijah Kelley and his family would like to thank everyone so much for all of the cards, phone calls, donations and especially prayers. We would also like to thank the First Baptist Church and the Free Will Baptist Church for the love offerings they gave to help with expenses, also The Assembly of God Church, The First Baptist Church, Barnsdall Schools, my wonderful brother and sister-in-laws, nieces and nephews and all of the volunteers who put on the chicken benefit and noodle dinner for him. We were so overwhelmed! God has truly blessed us with you wonderful people. We would also like to thank both the elementary and the high school for the donations, prayers, cards and calls to the hospital to check on him and just to let him know they are thinking of him. I know he feels isolated and alone. Those notes and calls mean so much to him.
Elijah is spending a lot of time in the hospital right now and we stay with him at all times. His dad and sister drive down most every night to see us. Without the help we have received we don't know how we could continue to do this. We have not worked since Elijah's diagnosis. He was diagnosed the week before Christmas with a very high risk rare form of leukemia called Philadelphia Chromosome Positive Acute Lymphoblastic leukemia. Saint Francis Children's Oncology Hospital has seen only one other case like this in the last decade! Therefore the protocol they have him on is severely intense. His plan of care has been complied not only by the three wonderful oncologists that care for him at the Children's Hospital at St. Francis but they are also in alliance with the Children's Oncology Group (C.O.G) which is a network of nationwide oncologists, hematologists, cancer researchers and professors in genetic and cellular research. He is on a plan of care used most recently at St. Jude's, M.D. Anderson, and the most prominent research hospitals in the world. He takes a fairly new form of chemotherapy daily called Gleevec that was specifically designed for the Philadelphia Chromosome Positive Leukemia. Praise God for this amazing medicine!! He is also admitted in the hospital every 20 days for however long it requires for that "recipe'" of chemo that is due at that time. He receives different combinations of chemotherapy every twenty days sometimes two different kinds, sometimes five different kinds. They have to be given in different combinations and rotations to help prevent resistance to them. Elijah also has spinal taps with chemo inserted directly into his spinal column and bone marrow aspirations every two to three weeks, this is to continue for approximately 3 1/2 years. For instance this last month he went in for a 'terrible recipe" and was in the hospital for sixteen days finally getting to come home for three days on chemo pills among numerous others and daily injections by me to help his blood count build back up, only to have to be admitted again for six days this time for another round. Thank the Lord it was not as bad, although never pleasant.
In between hospital stays he has to go to the oncology clinic at St. Francis for blood work and if needed whole blood or platlet transfusions every two days. This has been a very hard time for our family. I want to please let you know just how thankful we are for everything everyone has done for us. We will never forget it. I pray none of you ever has to experience anything like this. Our world has changed forever. We had become very laxed and was living way to worldly, forgetting what we knew all along, that our Lord is here for us and has always been here for all of us. It has been the hardest thing in the world for me to give my son to God. I want to fix it, make it better and make it all go away but, I know I cannot do this. But I know the Lord can! I have fought with fear, anger and anxiety daily. The devil surely comes against you every chance he gets when he knows he has lost you to the Lord. And I know my Lord has healed my son!
During this time with Elijah we have had many talks. He is so strong and positive all the time. He takes care of me mostly. Sometimes I cannot help but cry when he is so sick no matter how hard I try not to show fear or worry in front of him. He just tells me to please don't be sad and worry, he knows it will all be ok and that he has to go through this so he can help others by telling them he did it and they can too and to give them the encouragement they will need so badly. He tells me his plan is to help other kids with cancer. The other day in the hospital Elijah asked one of the nurses we have gotten close to, if anyone was there that needed anything that we could do to help them with. There was a boy who had just turned 14 that week that also has leukemia that has had a very hard time that lives over two hours away. His mother also stays with him during hospital time. His mom told us his friends at school got together and sent him a portable Playstation and over the last few he had played that game over and over when he was feeling up to it. He had only the one game that had come with it. Hearing this Elijah found out what he liked and later that day asked me to get his billfold for him. I did and he handed me his money he had received for Christmas and gave me specific instructions to get Derrick a P.S.P. game and to give the rest of the money to his mother for help with food while staying in the hospital. I told him I would find a way to do this for them, that he did not need to spend his money, that it would get done. He was not having that, He insisted on using his money saying "What do I need it for? I have everything I need. God takes care of us, surely you have seen that mom, over and over," all the while looking at me like wake up mom we are blessed and are suppose to help others! I am so proud of him. He has been through so much and the treatment for this cancer is 3-4 years long. Then after the 3-4 years of chemo he will have to continue to get spinal taps and bone marrow aspirations every 2-3 months and blood test every few weeks to monitor for relapse (which will never happen in Jesus name !!!) for the next five years, The only thing is he doesn't get out much. When he is home it is after an intense round of chemo and his counts are so low he cannot be around a lot of people for fear of infection. They give him a few days to build back up his blood, then it all starts again! Thank God he has such a good gracious attitude, like I said he consoles me when I think I can't take anymore. Well we just got home today (Sunday) and we go back Wednesday, it is 3:30 AM and everyone is finally asleep and I'm up writing this. I definitely have my days and nights mixed up. I couldn't go any longer without letting everyone know just how much you mean to our family and how thankful we are for you all. We also want to let our family know how much we appreciate everything you all have done for us. This has made us realize what we have and to never take anything or anyone for granted. We love you all so much. We ask that you please continue to stand strong with us believing for total healing for Elijah. He tells us the Lord has a plan for him. He is suppose to help children with cancer. He is going to have an awesome testimony! Please continue to pray for Elijah and our family. Me, Phillip, and Katelyn need strength and guidance and please pray for nothing but good news and for all of the doctors to be in awe and amazement at his great progress every single day. May God bless each of you (He will you just have to believe and have faith). God wants us to have life and to have it abundantly and he does not lie. Once again thank you so much.

God Bless You All,
Phillip, Robbie, Elijah and Katelyn Kelley

Comments

[Marvin Ross]

Greetings from Wi!

When is Bigheart Day this year?
The last Saturday(5/31?) or the 24th?

[Louise Red Corn]

Bigheart Day this year is on May 24.

[Rae]

I will be praying for your son. How is he doing now since April. Psalms 118:17 is the verse I claimed for myself . Hope to hear much more about this young man's courage under fire. What doesn't break him will make him stronger. God bless you richly Rae

[Nancy]

I wish him well. Keep positive attitude. I know I'm going through chemo myself, but for a different type of blood cancer. I know what the 20 day schedule is like. Keep your chin up and keep smiling.
Wishing you well.

Nancy

[Nancy]

I wish him well. Keep positive attitude. I know I'm going through chemo myself, but for a different type of blood cancer. I know what the 20 day schedule is like. Keep your chin up and keep smiling.
Wishing you well.

Nancy

[katelyn]

He is such a good person with a big heart!! love ya bub!!