|Posted on June 10, 2014 at 9:15 PM||comments (0)|
February 2014 - During this time while on the DMFO Elijah relapsed a 2nd time and now we have to do this again! Elijah went through a NANT trial including Bevacicumab, Cyclophosphimide, and another drug. We had done 3 cycles of this trial, and then did scans. Unfortunately another FAILED trial and this did not work either, and Elijah's Tumors/cancer had gotten worse.
Devastated once again. We moved on with the Chemo therapy we had done before. Irenotecan/Temolozolomide, which damages his stomach lining and takes weeks for full recovery. We had Just finished 1 round and 10 days to finally hold foods down.
And are being scanned before we start a therapy called "MIBG THERAPY" only done at UCSF California!
|Posted on February 4, 2013 at 10:50 PM||comments (0)|
Keeping the Faith No matter which way it goes.
In this Note. I state my fears, beliefs, and Faith! Just because I feel this way, does not mean my Faith is any less. I am human, and yes, we will feel these things, because we are human. There is so much death around me, and it never helps when I had a child who was on his deathbed. but to be more then thankful that what God has done for us already. I will answer your question now if you have it by the end of this story "WHy does God take some and heal some?" I will answer it this way to the best of my opinion.... I will say this a lot too... We live in a corrupt, and sick and dying world, and No one is immune to it... Since the beginning of time when Adam and eve sinned, we brought death into this world, by listening to the father of lies. so now there is eternal death. BUT JESUS came to bring LIFE, so when and if we die, we will spend eternity with him for those who believe. So when we get plagued with sickness and disease here on earth, that some may live and some may die, this is unfortunatly LIFE, but life itself. God is not happy that one should perish. He weeps with us, understands our pains, and helps us get through. So if one may die with cancer it is not because GOD wanted that person to die, but that we might turn to him in times of trial in sickness and in health before we die!!!
First off I would like to say, That I am super greatful, that I get to look at my son Elijah everyday, and be reminded how awesome my God is!! How He had kept his hand on Elijah this whole time through our journey and before and after. He has Never left our sides, and I am constantly reminded of his Glory by looking at my son. so many miracles he has gone through, even while he still had cancer, still amazes me to this day.
Some of you may not understand what I have to say unless you have been in my shoes, and experienced what we as a family experience. I write this to document and blog about our journey, so I can look back and say, Look what the Lord has done!! Or I remember that!!
Elijah, Grew something in his neck around October of 2010. I went to church myself since all 3 of my boys (including the husband) were sick. Elijah having a 3rd temperature, this time was different. When I came home He grew this massive THING in his neck, in a span of 3 hours. I immidiatly laid my hands on his neck and began to rebuke over whatever it was, in which I didn't know at that time, and began to speak to it to leave and decease and prayed over it! My faith immidiatly rose up. not knowing what it was. That night I gave Elijah Medicine to calm his fever and sent him to bed. All night I was up praying for Elijah. Something in my spirit told me something was wrong.
The next day It hadn't gone away. So I began calling everyone I knew, including the doctor to make a doctors appointment and to get prayer from everyone. I took a few pictures and posted it, to get a few opinions. I was confused and scared. but not as scared as to what was coming into our lives down the road. The Doctor wasn;t sure of what it was and made a few predictions of what he thought what it might have been and gave antibitotics, which did not help. at the end of October about 3-4 week later, the bumps in Elijah's neck grew bigger and bigger. so we were referred to an ENT in which turned and did a biopsy on Elijah. At this time, People were praying that it wasn't a tumor. Everyone around us had Faith and believe Elijah was alright!
I even had people come to me and believe with all their might and tell me that Elijah is ok. A week Later, after sending the biopsy samples to Lucille Packards Childrens Hospital, I recieved a call for me to come down to stanford and talk with doctors, in whom Did NOT want to talk to me over the phone.
At this time My stomach dropped, I felt sick, and I had feared the worst. I had so many friends and Family with support in praying for good news for Elijah. Yes there was Alot of Faith being spoken for him!!
Walking into the office where we had learned Elijah had recieved this cancer called Neuroblastoma. It took us over a week to finally remember and pronounce the word. we had never heard it before. The news spread fast. like lightining hitting a tree. I mean really fast, prayers began being liften up!
We got home and there were friends there ready to give us hugs! And even though we had Faith, the reality was that My son got cancer. Did not mean that our faith was weak, it meant that we live in this corrupted, sick and dying world, that not even God's children are immune to what happens here on Earth, thats the reality!!
The reality also was, FEAR!!! Fear of not knowing the unknown. Fear of my child dying, fear of cancer. Fear of not knowing what to do!!!! In my head, I would think I would be the last person to have a child with cancer. It did not even cross my mind that having a son with autism, then a son with cancer. I even thought, How could God allow this to happen?
Throughout our Journey for the next 2 years, with chemo, radiation, 2 bone marrow transplants and antibody therapy, our story of Elijah spread throughout the world. many prayers for Elijah were being said in different countries! how amazing! in this proccess my Faith began to grow as I watched the reality unfold before my eyes! I have seen Elijah running around his bed during Chemo therapy, to the story of Elijah who stopped walking and ended up in a wheelchair and then began running from his wheel chair. to seeing the tumors just fall out of his neck during surgery. The reality is, FAITH HELPED!! So I believe there is a God and I Believe that Medicine and Doctors only treat the symptoms, but GOD HEALS!!
Jumping ahead to Being cancer free... Our journey continues...
And now here we are FEB. 2nd 2013 We continue to See the doctor every 3 months for our anual testings. Elijah continues to recieve MRI's, Xrays, CT-scans, MIBG's, Labs, Bone marrow biopsies. What I am about to tell you, take a moment and try to understand and put yourself in my shoes! Because it is not an easy road, it is not easy to continue to keep having the faith, really it isn't... Like i said before I am only human, and I have feelings, such as fear sometimes.
In the back of my head When we leave to go the childrens hospital, I have thoughts, thoughts of fear. What is going to happen during these tests? will My son relapse? Hope they don't find any tumors growing back!!?? The reality of ME being a mom, who wants to do everything to protect my son is that I get these thoughts of fear in my mind, because when I look back when we did not know Elijah had cancer, and everyone praying, he still got cancer. who is to say it wont come back?? YES, these are the reality of being human! as much as people want to tell me "OH he will be ok" or "Just keep the faith" Is not an easy thing to do. (easier said then done right?) It is tough, having to sit there for 6 hours in agony in thoughts with fear. I torcher myself sometimes, I shouldn't be doing that, but I do.
But All I can remember, is in the beginning when he was going through the same tests when we learned he had cancer, remember our pains, our hurts, our confusion etc etc. So when I go for these tests, this is still a trying time for me and my family. We have to go back and remember what kind of FAITH we had during his treatments! we are constantly reminded how much Faith is needed to help keep Elijah Cancer free!! And think to yourselves for a second.. WHAT IF HIS CANCER COMES BACK???? will I lose my Faith because it came back? NO!! or will I continue to trust in the Lord no matter the circumstance?? (yes!!) The reality is, we will get sick, but will you have Faith in God during our times of reality??? It is truly hard, every 3 months, when Elijah is undergoing his tests. So keep in mind that depression wants to set in, fear wants to come in... So when you do pray for us, be reminded it is hard to keep having the faith.
I will say this now, that I said all that.... FAITH OVERCOMES REALITY!!!! When my heart is racing, and I recieve anxiety when Elijah is undergoing his tests, I remind myself, GOD ALREADY HEALED HIM! If he can do it once, he will continue to do it! The reality is, Faith is the EVIDENCE of things hoped for... which means knowing God will do what's in the UNKNOWN!!
So instead of saying to us "Keep Having the Faith" or "He will be ok" Take a moment and pray, not only for Elijah, but for the rest of us, continuing on this journey with Elijah. It's never easy thinking about remission, and if it may return!! I know I must continue to keep having Faith. In the End He is Still cancer free! God proves himself to be faithful and true no matter the outcome, and he is still GOD... I don't need to be reminded to keep having the Faith, I already know, cause I live it!! I live by Faith! It is the only thing I hold onto. I will always continue to Speak HEALTH over my son no matter what the enemy throws into my head!! It aint easy is all Im sayin!!
Love every single one of you and thank you for trying to understand!!! GOD BLESS YOU!
|Posted on August 13, 2011 at 3:00 AM||comments (0)|
I went into the Drs conference, confident, hopeful, and full of faith! I came out beaten up bruised and saddend... But first off let me start by saying, that this foundation may be shaken, but I SHALL NOT BE MOVED!! for I stand on solid rock and each time the enemy throws darts at us, the word of God our sheild protects us from those firey darts. and with bad or good news my faith, hope, and trust will always be in the Lord.. The enemy tries to tear me down, and he is losing!
so with that in mind...
Elijahs Legs : with the xrays coming back clear and normal I still was concerned because he complains of pain in his ankles especially in his right ankle.. there is NO swelling or any show of infection... but Why was he still Limping, with all that I can do as home remedies.? The Drs. proceeded to say that they want to enforce MIBG test (which he goes in Wednesday to get in the injection to light up his bones and thrusday he goes under scan, 3-4 hours) This MIBG is to scan and see if there was a re-occurance of spreading cancer into his legs... YES, the drs said there could be a chance of cancer spreading to his legs... HOW? u ask? well let me tell you how, than tell you what i said about it.
Neuroblastoma is fast rapid growing cancer.. and tumors grow really fast, if there happens to be 1 microscopic cell that still Lingers around can graab onto the bone and begin to grow.. and grow fast enough to start damaging in a week or more... With all that chemo and 2 transplants, how can that be? Dr Twist told us that she has seen this happen and its not uncommon.. theres a 50/5o chance that this could be the case she mentioned... neuroblastoma cancer cells are very complicated... and IF (not claiming it, but for example to explain) IF he were to get cancer in his legs, theres not much they can do, chemo cant help it, basically saying its not curable!
I quickly turned and said to the dr "I DO NOT ACCEPT THIS!" I wont accept he has cancer in his legs.. I told her Im gonna keep a positive attitude and create the atmosphere of Faith and believe he does NOT have cancer in his legs... I said we are not gonna speak it into the air and The dr Agreed and believed with me!! so that was that!! So Elijah will stil get the MIBG test next week!
RADIATION : I was so dead against radiation.. I mean if we avoid radiation that causes cancer why give it? this was my understanding of radiation.
I went in saying The drs cannot change my mind, i have made up my mind already, and ronnie and I both mutually agreed we both didnt want to do it.. it didnt seem nessiscary since it was only a preventative and the dosages were so small that it would'nt make too much of a difference..
What Im about to say, some of you may not understand.. God works in ways we may not always understand... But Gods ways, are not always our ways! So with that being said. The spirit of God checked me in the middle of our conversation, and In this checking I felt an abundance of peace from the Lord. I distinctly heard him say "My ways are not your ways" I have a plan and your fleshly wants and desires cannot get in the way of my plan" and I heard "follow protocol" I knew this was from the Lord, cuz first of all I was totally dead against radiation in the first place, and my want was not to get it, and yes i was following my feelings on this decision and not really hearing God in this... I finally heard his voice speak to me on this specific subject... So I had talked with Ronnie and it was confirmed we will follow through with radiation.. You have to remember that this dosage he will be getting is NOT damagable, the worst that can happen is dry throat or swelling in glands.. but thats it.. Its not enough to Cause A secondary cancer, which the chemo Elijah had already had actually causes secondary cancers like lukemia, and not the radiation, and it wont accell the percentage of making the ratings higher for lukemia or anything! I feel so at peace and comfortable at making this decision, ok really i Did'nt make it, God made it for me!!
MAINTANANCE THERAPY: Maintanance therapy includes us being home for 2 weeks, than being impatient down here at LPCH for 2 week.. Home will be a oral pill he will take everyday, with blood checks consistantly... and than 2 weeks at hospital with chemo being entered into his central line as like before.. but very low dosages.. WE HAVE 6 MONTHS OF THIS!!!!!! so the end isnt quite near!!! we still have many more hurdles to jump, as long as theres not mountains to climb.. hurdles to jump are much easier!!
Coming Home : Coming home is not going to be when we thought it was going to be.. God has his plans and I trust him... So because of Radiation will start the end of august or beginning of September, we can only visit Home for right now, but we stay here locally.. I am planning on coming home for 2 weeks before radiation is to start!! Than maintanance therapy we will be here for a month for trial testing to make sure he doesnt have any bad reactions or sicknesses.. than OCTober we will be hom for the 2 weeks back and forth....
THAT IS IT FOR NOW!
God is in control! thats all that matters.. He has Elijah and is taking care of him!!! Thank you Lord!
|Posted on May 22, 2011 at 12:00 AM||comments (0)|
After all the tests were done, we found out, that there was no evidence of Neuroblastoma anywhere in his body!!!!!!!!!!!!!!!!!! WE KNOW he is cancer free... Unfortunatly the Drs havnt claimed it yet, so therefore we must follow protocol (which would be wise to do so) and we are recieving (HIS OWN) Bone marrow stem cells infusion (aka transplant)!!!
He has been randomized to 2 transplants but after all is said and done, we wont have much to do afterwards!!
So we Just Got done with the Second Transplant. and within a Week, Elijah is at full complete Healing.
Because the transplants were so strong, Elijah grew Pain in his legs and had stopped walking, I had to carry or stroll him everywhere, cause he was in too much pain.The doctors were concerened about him growing more cancer cells in his legs, so they proceeded to do some testing.. but before the testing, My parents came down which were practicing their healing ministry God had called them to do. They had laid hands on elijah, prayed for him, and In an instant he was walking and in fact running around the Ronald Mcdonald house.. I have never seen an instant miracle in my whole life, I just grabbed him and balled into tears crying because how gracious and Majestic our God is! we went into tests and came out with no signs of any cancer growing in his legs... THANK THE LORD!
We had to do 12 days of Radiation and the first 2 days, Elijah was in extremem amount of Pain, because his Lymph nodes swelled from the Radiation... But after the 2 days, Elijah had NO side affects and continued to be healthy all throughout the 12 days of this. That flew by fast... This Massive mountain is out of our way!!! We will Start Maintanance therapy Sometime In October 2011, about a Year ago when his Lymph nodes grew! this will be 6 months of meds with 2 weeks at home and 2 weeks at hospital, back and forth!
About In October of 2011 we got a call after some tests before starting Maintanance therapy. This call was telling me to come back to do more tests, because they found something small and discrete in his legs... so we came back to do some testing, all the while prayers went out, cause we had the scare they may have found cancer back... Was actually scar tissue from and old tumor no longer there. God once again taken whatever was there and removed it out of the way. On that same day the Doctor Claimed Elijah Ronnie Mainville Cancer free, and he is in remission!!! SUCH JOY Ov erflowed my soul! In 10 months (less than a year) God took us through, brought us through, it has been a journey and I celebrate LIFE today and everyday I have here with my son Elijah! It came from 20% chance of living to CANCER FREE!!! woohoo! Makes me cry as I type this out! God is our healer, our comforter, my strength and shield! That when this sick and dying world brings on pain and sickness and disease God as my only HOPE in this world has heard every single prayer that was said for Elijah..
All the claiming of being cancer free out of those who have Faith for this little boy has worked! such a boost of Faith this has given our family!!
December - 2011 - 2 cycle of maintanance therapy.. Includes (amnesteem) - which is accutane, IL-2, and an antibody! This treatment to maintain his cancer to stay away has been the worst for him. He has fallen into depression and sickness... but I know when this is done he wont be in this state anymore. I wanted to quit protocol twice already. But we are taking every measure so he would never relapse... Neuroblastoma is a fast pace rapid growing cancer and it takes one cell to spreadin a matter of days! maybe months! So we are working on keeping him comfortable til Maintanance therapy is over in April of 2012. than we will be done with our treatments and protocol!! I CANT WAIT!! God has done so many things for us. He still gets all Praise and Glory for being who he is, and for helping us in times of trouble!!!
Greener pastures are just ahead, and I know God has great things in store for Ronnie and I and our family... I know partly what its gonna be, he has shown me a few things that will happen in his will! I cant wait for that either...
May 4th 2012 - Victory tears flow down my face, as the doctor shakes me hand and says congratulations!!!! You guys are all done.. no meds or labs .. dont have to visit til august... I really feel completely and totally free!!!!! Praise the Lord!!!!
Praise the Lord For Healing Elijah!
|Posted on November 25, 2010 at 10:55 PM||comments (0)|
One day, Back in October of 2010. I had left my boys behind with daddy, while I went to church. The boys had a simple cold for the 3rd time in october, seemed to never end that month.
3 hours I was away, I had come home to find Elijah Mainville my 3 year Old Son had grown some massive lymph nodes in his neck, within a span of 3 hours!
I freaked. When I had taken him to the Pediatrics Dr. He had told me just by the examination that they were just swollen lymph nodes, and that sometimes this does happen when a bacteria (fluid) get into lymph nodes. He gave us Anti bacterial medicine and sent us home, said they should decrease in a week.
3 weeks had gone by and after seeing the ped, DR over and over, and him telling us that Elijah was ok, he finally refered us to an ENT DR. who at first wanted tp up the dose of Meds we were already taking. in 3 days we were seen again, and the ENT DR started to get concerened that there was no results, he though in his mind "This could be something else" GEE YOU THINK?
So finally he ordered a biopsy to be done on the lymph node! I had a Gut instinct something wrong was going on (I mean these nodes were MASSIVE!) so I asked the Dr to Send the same Sample of the Lymph Node to Lucille Packards Childrens Hospital In palo Alto California! He complied with my request! In the mean time he was trying to diagnose what these nodes were doing. we came up with a few explinations as to like "CAT SCRATCH FEVER" number one because Elijah had a small cat scratch on his shoulder, on the same side as the swollen Lymph Nodes and when we get CSF our nodes tend to swell, so we had thought it ws that or it was a possibility it could be!
A week goes by, Elijah started getting a cold again, and this time he was producing a High fever! i kept it hidden (or down) with childrens tylenol, as when we treat all our kids for fevers! the next day after Elijah having a 102 temp we get a call from THE ENT DR, and the pathologist where we live could Not find anything, of course they did not test for Cancer, they dont have the practice obviously to do that extesnive research, as every pathologist SHOULD HAVE!! anyways, the same day I c got a call from DR CLAIRE TWIST from LPCH at stanford hospital saying they need to see us right away in the Blood Disease and Cancer center! Immidiatly my heart dropped into my stomach and I felt sick! with trying to keep a positive thought in my head, we proceeded to the hosptial with Elijah going for the ride.
On November 5th 2010, Dr Twist (whom is a Neuroblastoma specialist) said that the Pathologist At LPCH had found Cancerous Cells in his Nodes, and they would have to do extensive research to find out how much and where he has it. On this day he was proclaimed a Neuroblastoma Cancer child! This was the day of actual Diagnosis.
It was a tough day! Of course! We went home because Elijahs Fever was down and to normal when we were at Drs Office. They had told us about the protocols and procedures and what happens when he gets a fever, and for me to call if he had a fever! So comes the weekend and Elijah ends up having the 102.5 temp again, and they asked if we can come (drive 3 hours) to the ER in LPCH at Stanford.. ok so an overnight packing happened, and little sleep. A Quick drive to hospital.
It was so kaotic when we got there with Drs everywhere, nurses, Elijah being poked right and left for Blood draws and cultures etc etc. It was hard to comprehend al that was going on, this all happened so fast! He was soon admitted into a room and plenty of meds!
The next day we had talked with Drs. And they decided to go for the testing which included “Bone marrow scan and Biopsy” CT scan” MRI” another Lymph Node Biopsy in the neck, and a few more!
A week later (still in hospital) we found out the results and they were :
Neuro Blastoma Cancerours Tumors Stage 4 Cancer. And the reason It became stage 4 cancer is because he has a Massive Tumor growing in the skull ¼ of it growing on top all the way thru the BONE itself and ¾ of it at the bottom of the bone pushing On top of the brain (NOT A BRAIN TUMOR)!
He had massive cluster of cancerous tumors in his neck. And 90% of His Bone Marrow were covered in head to toe of small detectable tumors!
We quickly had started chemo therapy and the plan was 2 years of Chemo plus recovery chemo! This was the original plan! He would be getting chemo every 3 weeks (once a month basically) The first Night Of chemo (I stayed with Elijah in Hospital everyday) was the hardest for me, it was worse than the day we found out he had cancer.. As I watched them Hook him up to Chemo (the strongest kind of Chemo) I was hurting inside, and felt week and helpless, as a mom that’s the worst you can feel for your child! I cried so hard I can barley breath, this was truly the hardest night in my whole entire life knowing they had to inject POISON to kill this disease!
At the same time I felt the Spirit of God grow inside me, I instantly felt an overwhelming response of strength! I had chosen to NOT accept this! I will not accept sickness and disease in my Child. Jesus Christ had already been beaten and bruised and bled on the cross for our healing.!!! This was already done, I just knew I had to believe it and Accept the report of Jesus Christ and his Blood! So every Chemo Elijah had received from here on out (I laid hands on the bags of chemo and BLESSED each one)
We have had to have Thanksgiving in the cafeteria with family coming to visit! Not my ideal TG but you make due! Ronnie (my husband) had to take weeks off of works using up all his vacation time PPO and PTO and his sickdays (wait?) … ANYWAYS! Sleepness nights became a part of everyday living, and missing my older son CAYDEN who is 5 yrs old and has AUTISM! I have been an at home mom since I was pregnant, and this was also the hardest thing to do, is to have to sacrifice my time with my older son to be with Elijah! Ronnie had to become a Worker and a House Wife/Mom/ DAD in this process!
3 months into Chemo we noticed dramatic results of the Chemo, because of the Blessing of Christ he dramatically had his swollen lymph nodes decrease in size! Not only that, but he hadn’t gotten sick at all with this chemo he was receiving! (knocked on wood) – (the cross is the wood).
After knowing that his lymph nodes (tumors) in his neck had decreased the Drs wanted to find out if anything else was decreasing, so we went ahead and did more testing! The testing shown that the tumors were starting to decrease in size. Even the one in his skull. So we kept on path of chemo and changed his chemo meds on the 4th cycle (4th month) we were warned this chemo may make him sick, so we prepared as best as we could!
In the meantime things at home began to develop as far as community outreach was going! Elijahs story began to be told around the world for prayer! He story was on a tv evangelist prayer group, he was all over facebook (“Elijah Cancer support Group”;), by word of mouth, friends in high placesd and friend in low places began to talk! Friend in other countries around the world started praying! Our count at 4 months after diagnosis was over 10,000 people praying for Elijah! CANCER NEVER HAD A CHANCE TO SURVIVE!! My little man became a celebrity per say. A benefit Dinner was held on Jan 15th 2011 for raising money for Elijah! After all that was said and done over 800 people had attended, had a few music groups and skits, and raised just about 18k! an overwhelming response! To this day we are still receiving money from people who are helping! Gods provision has not ended for us!
At the benefit dinner we had announced after all the testing that elijahs Tumors in his neck were 90% gone, and that Thursday before the dinner we had found out the Elijahs Bone marrow went from 90% covered to 0% covered! All the detectable tumors in Elijahs bone marrow had decreased to nothing!
The tumor in his skull had decreased 30% but is still resting on the brain with no puncture to the brain! YAY!!! God was doing amazing miracles in my son! People would look at Elijah and ask, if he is stage 4 why isn’t he sick? I would say, Let me tell you why!!?? Because it started with FAITH! Faith in Jesus. To even question God as to why, who, what, when where, and not even a possibility! See My beliefe is EVERY GOOD and perfect thing Comes from God, this is what the scripture says. I don’t Believe God gave us to this road to teach us a lesson or to tech us to learn how to have more Faith! But in this time of trouble and trials of sickness and diseases I have LEARNED to fall on Christ and trust him. We tend to limit God and what he can do. I know God can speak and it happens! So therefore I believe as I also see it happening!
Elijah, Last week 3/15/2011 had gone into surgery for a ENT surgeon to remove the tumors in Elijahs neck.. We had recieved EXRAYS on the tumors in his neck and we found out that the Tumors had grown around the corated artery leading to his brain, and 5 other nerves.. Of course this was upsetting because the risk the DR had to take to remove them was damagable to Elijah.. he could have Ruptured the nerves or corated artery cause stroke, brain damage or damage to any of these nerves!
Sooo... We prayed for Elijah to have a miracle!! When the Dr went into Elijahs Neck, The Dr was amazed at what he saw!! God had released the Tumors off the artery and nerves.. there is no damage to the nerves or artery!! and the dr put it in LAME MANS TERMS (It was a piece of Cake!!) he said!! well not really that easy but he cleared it all out!!!!!!
God had removed all the surrounding tumors off of everything! this was a true complete miracle straight from God himself! The drs were amazed!!!