For three years, Ila Jean was our cancer free survivor. She fought through her first relapse on May 5, 2011. Still going through maintenance treatment Ila Jean relapsed yet again with on December 21, 2011. Ila battled with all she had left until God took her home to heaven on April 15, 2012.
On August 28, 2006, Ila Jean was admitted to Albany Med Childrens Hospital with a mass in her abdomen.Scans that week showed disease in her femurs, right hip bone, L4vertebrae, sphenoid bone, left occiput, a large tumor filling ¾ of her abdomen and a tumor in her sphenoid sinus cavity. On 8/30/06 the tumor biopsy showed stage IV Neuroblastoma with n-myc amplification and poor shimada. Her bone marrows were heavily involved and her central line was placed. She started her first round of chemo the next day. After round 3 she had her stem cells harvested. After round5 her abdominal tumor was removed and a g-tube was placed. After round 6 her sinus tumor was removed then she had round 7 of chemo. At that point we decided not to do transplant and to go straight to 3f8antibody treatment at Sloan. Scans after round 7 still showed disease present in her hip, skull and spine as well as bone marrow, so Sloan added the 8th round of chemo. Scans again showed disease present on our first trip to Sloan in her skull, hip, bone marrow and a new spot in her upper right arm. The doctors were discouraged and round 9 and10 were added as outpatient along with 14 days of radiation to her right hip. Scans again showed disease, however much improved. The11th round of high dose inpatient chemo was added. Scans again showed improvement so the doctors added round 12 of chemo. We started 3f8treatment with beta glucan at Sloan on 8/20/07. Ila reached HAMA after each of the first two rounds of 3f8. After 3f8 she had radiation to her hip, abdomen and skull. She was put back on chemo as maintenance to prevent her from relapsing until her HAMA level came back down. After 4 more rounds of chemo (16 in all), our prayers were answered! On February 7, 2008 Ila was declared NED!! She was also HAMA negative. She finished 3 more rounds of low dose chemo bringing the grand total to 19 rounds then went back for scans which were clear in April 2008. She was still HAMA negative. She got 2 rounds in of 3f8 with GMCSF. She also completed 2 rounds of Accutane. On July1, 2008, Ila is once again HAMA positive. On August 4, 2008, she was put back on chemo to try to lower her HAMA. After 2 rounds she was then put on a new trial using Rituxan with Cytoxin to lower HAMA. She then came home for round 22 of chemo. Two weeks later she was HAMA negative and received her 3rd round of 3f8 in which she experienced her worst pain to date including 2 trips to the Urgent care for fevers with one admit to the hospital. To our surprise she was HAMA positive 2 weeks later and she finished her 23rd round of chemo.Scans in January 2009 were clear. She was also HAMA negative and finished her 4th round of 3f8 on January 23rd. Ila was HAMA positive again and went back on Accutane. For the first time, Ila went 3months between scans without Chemo and the week of April 13, 2009scans were clear. Still HAMA positive, she did Rituxan again in May2009. She had round 5 of 3f8 June 28, 2009. Round 6 and final round of 3f8 was done the week of April 5, 2010. Ila scanned every 3months and was clear. On May 5, 2011 Ila relapsed with a localized abdominal tumor. She had surgery at Sloan on May 16th. She finished 3 rounds of chemo and stem cell harvest. Ila developed PCP pneumonia and was transferred to Sloan in mid August where she recovered. She did her first round of high dose 3f8 but HAMA'd after. She did 14 doses of radiation to the right abdomen and then went home to start 1st grade. She did rituxan but it did not bring her HAMA down as we had hoped. In the meantime scans in November were clear. Ila relapsed again on 12/21/11 and progressed through one round of chemo. She progressed through the ALK trial at the NIH and after some radiation at Albany Med, she went home to heaven.
Ila has had:
7 ultrasounds, 35 CT scans, 3 bone scans, 27 MIBG scans, 13 MRI's, 5 central lines, 2 PICC line, 2 porta cath, 25 Bone marrow biopsies/aspirates, 25 xrays, 8 ECHO cardiograms, 34 doses of radiation to her right hip and abdomen, 14 doses of radiation to her skull, 5 doses radiation to left chest, 27 rounds of chemotherapy, 2 rounds 3f8 antibody w/glucan, 6 rounds 3f8 antibody w/GMCSF, 6 rounds Accutane, 1 round high dose 3f8, 3 rounds Rituxan/Cytoxin, 42 doses ALK inhibitor, 10/31/06 & 7/5,6,7/11 - stem cell harvest, 12/18/06 - abdominal tumor resection & g-tube placed, 1/18/07 - sinus tumor resection, 7/9/09 - repair of gastric fistula( from g-tube removal), 5/27/10 - port-a-cath REMOVAL!!!,5/16/11 - resection of abdominal tumor relapse, 7/5/11 stem cell harvest over 3 days
Feb 20, 2014 3:09pm1 Peter 1:3-9
A Living Hope
“Blessed be the God and Father of our Lord Jesus Christ! By his great mercy he has given us a new birth into a living hope through the resurrection of Jesus Christ from the dead,and into an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who are being protected by the power of God through faith for a salvation ready to be revealed in the last time. In this you rejoice, even if now for a little while you have had to suffer various trials, so that the genuineness of your faith—being more precious than gold that, though perishable,is tested by fire—may be found to result in praise and glory and honour when Jesus Christ is revealed. Although you have not seen him,you love him; and even though you do not see him now, you believe in him and rejoice with an indescribable and glorious joy, for you are receiving the outcome of your faith, the salvation of your souls.”
There is no right or wrong way to grieve. It is a very personal journey that is unique to each and every one of us. Even two parents losing a child, will grieve differently. It is up to each of us to find our way through the darkness and into the light again. That largely depends, in my opinion, on our personal relationship with God. Every soul on this earth has it's own personal relationship with God. There may be turbulence in that relationship, but God is always present and never leaves us. Every human being at one point or another in their life on this earth, is faced with trials. Some worse than others, some more trials than others. All of this is within God's plan for us. There is a lesson to be learned in all that we live through. I truly believe this and always have.
2 Corinthians 4:17-18“For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary,but what is unseen is eternal.”
As a child of God, I was given freewill. In this free will I have the ability to do right or wrong according to God's laws. Within this free will, however, I am able to praise my God in my own personal way free of judgment by those that may praise him in other ways. What matters most in this life is that you know God. That you love God. That you honor and praise God. That is my own personal belief that I am entitled to.
God wants to see us choose him.Therefore I believe we are given trials and tribulations to teach us and to show us that in turning to God he is always there for us. He wants us to rely on Him.
Lamentations 3:31-33“For men are not cast off by the Lord forever. Though he brings grief, he will show compassion, so great is his unfailing love. For he does not willingly bring affliction or grief to the children of men.”
Though we often turn to God in grief with anger and a want to understand, we also look for comfort,knowing it is only through him that we will find peace again. As a human, it is nearly impossible to avoid our instinct to be upset,angry and hurt because we just don't understand why something horrible has happened. In losing my child, I want so very much to understand. As humans, we can talk to each other and give answers to one another for the most part. With God, it isn't always so clear. I have my own beliefs and reasons for what happened with my little girl. That is how I have made my peace. I am at peace. But just because I am at peace with God over Ila's death, does not mean that won't struggle with the human aspect of wanting a definitive answer. Does this mean I am mad at my God? No. I have no anger,though some may feel I do. What I suffer from is the frustration of not knowing exactly why she had to suffer with cancer and die at the age of 7. So I pray to God and talk to God every day to help me make my peace with this.
Psalm 34:18 “The Lord is near to the broken-hearted, and saves the crushed in spirit.”
Psalm 71:20-21 “Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up.You will increase my honor and comfort me once again.”
Isaiah 41:10, 13 “Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. For I the LORD thy God will hold thy right hand, saying unto thee, Fear not; I will help thee.”
I am saved. As a child I accepted Jesus Christ as my Lord and Savior. I will be granted eternal life in heaven with Him. I may not be perfect, none of us are. We all have our own trials to get through and survive. I believe as long as you turn to God and ask for his guidance and help and love, you will receive his promises. We all need to turn to Him to get through everyday of our lives and the choices, situations and hard times that we all face. As long as we do not lose sight of Him, we will be ok.
I may not go to church every Sunday or live my life in as holy a way as I should. But I try to get closer to God every day. I turn to Him for everything in my life. Only God knows me and where I stand with Him. Only God. So I ask that I am left to practice my faith in the way I see fit and through the way I pray to God to help me. I know God's ways and what He expects of me.How I deal with that is between me and my God.
Do not cast your judgments on me. Save them for those who know no God.
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ila Jean's CaringBridge site is made possible through donations. You can make a donation to CaringBridge.