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ila Jean’s Story

Cancer may have taken hold of Ila Jean's body and ultimately her life, but it never took her spirit. Spend one day in the pediatric cancer clinic and you will see the most lively spirits on this earth. I was so very lucky and thank God every day for the 7 glorious years I had with my little Ila Jean "bean".

Here is a condensed version of what she went through medically. For a more life changing experience, read her journal that I kept since shortly after she was diagnosed. I spilled out on the keyboard many a late night in the hospital and this became my therapy as well as a way I found to show the world a glimpse of what it's like to have a child with cancer.

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 round 5 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 3f8 antibody 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 and 10 were added as outpatient along with 14 days of radiation to her right hip. Scans again showed disease, however much improved. The 11th 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 was 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 3 months between scans without Chemo and the week of April 13, 2009 scans were clear. Still HAMA positive, she did Rituxan again in May 2009. 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 3 months and was clear until May 5, 2011 when Ila relapsed with a localized abdominal tumor. She had surgery at Sloan on May 16th. She finished 3 rounds of high dose 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, her little body wasn't strong enough to fight and 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 - 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

Along with numerous blood transfusions and infections and countless trips to the clinic. She had damage to her right optic nerve from the sinus tumor and was blind in that eye. Her heart showed no signs of any damage from the chemo. Her hearing exam in March 2008, showed high frequency hearing loss and she wore hearing aids.



Latest Journal Update

The End.

Childhood Cancer Awareness Month is almost over, although I continue to spread awareness where I can all year round. Tonight and tomorrow night I want to show the darkest sides of pediatric cancer. The end.
After Ila's second relapse and the one round of chemo she had done it was time to meet with the surgeon to talk about removing her tumors. As far as I knew, she had just three in her abdomen. When he pulled up the scan, we both looked at it in a state of shock. There were spots lit up all over it. I immediately knew and said aloud that it had spread. There were many more tumors visible on the scan. He left the room and in my heart I knew it was not good. He came back and I was brought into the Oncologist's office where I was told indeed she had progressed. This was the very first time Ila had ever progressed through chemo. It's a word that frightens every cancer parent. I held it together the best I could, being alone with Ila in NYC. I went to get her in the playroom. She was having fun as usual. It was her birthday week after all. She was very excited. It's not possible to put into words how you feel not knowing what to do next and your child's life hangs in the balance and there she is running around laughing and playing having no idea how very precious her life is. The next step is even harder. It is now up to you as the parent to decide what route you want to take because the medicine didn't work. Do you follow the advice of her doctor or find another trial to go after or another doctor or hospital to try. The decision you make may determine whether she lives or dies. Talk about pressure. To make it even harder, her doctor came back telling me he recommended a therapy that he didn't even think would work. Then seemed to think the trial I was looking into was the wrong choice. I didn't know what to do. So I prayed and I talked and I researched and I prayed and I made phone calls and talked to everybody that would listen. All the while I was watching her stomach get bigger from the tumors growing inside her. John came to the city and we decided to go for the trial I looked into. We thought doing a treatment that her doctor didn't even think would work wasn't the way to go. We should try a trial that she fit all the criteria for. It could be just the answer for her. So off to Maryland we went. John was there for a week or so then he went home. Left with Ila Jean alone, it was hard. She had to take this terrible medicine to drink every day morning and night for the trial. It was terrible to taste but it was the trial medicine and absolutely the entire reason we were there with her. She hated it and cried sometimes and I was so frustrated sometimes because I knew her life depended on it, I would lose my patience with her and yell at her to drink it when she refused. I still feel guilty for that. Still It seemed that her tummy was growing and that started to make me nervous. After our weekend trip home three weeks into the trial, I had her checked and the doctors seem to think her stomach may be growing as well. That night we went to a horse farm with the hospital and her leg that seemed to be getting weak the day before suddenly gave out on her and she fell for the first time. My heart knew something was very wrong. By the next morning she could barely walk on her leg and it was in pain. She also had developed a fever. Inpatient she went and scans and ultrasounds were done. Her tumors indeed had been growing and she was immediately taken off the trial. She was progressing rapidly now. Her leg started swelling from the tumors in her pelvis cutting off her blood return and she started to go downhill slowly. I was told she was not eligible for the other trial I wanted for her there and so I went online and researched every available trial she could possible qualify for in the entire United States. They were wonderful and looked into every single one of them.Two days later it was time. Time for the talk I never ever ever ever wanted to have. I sat in a room with three other doctors and was told there was nothing more they could do. She was progressing too rapidly to qualify for any study and was denied by all of them. The only offer came back from Sloan and that was for palliative radiation. Palliative, I knew what that meant. Keep her comfortable until she died. The pain in my heart in that instant was unimaginable. I called John and he came down on the next train. We packed up the kids and drove to NYC the next day. We arrived that night and first thing the next morning we went to the clinic. One of the doctors sat us down and started with 'I'm so sorry'. They only felt that the radiation would give her some pain relief and that we should take her home and do radiation in Albany so that she could be home with family. Then he said it again, 'I'm sorry.' and again and again. My God! He said it so many times I wanted to SCREAM!!!! Instead we cried and hugged and grabbed the kids as fast as we could. We went to the house, grabbed our things and packed the car as fast as we could and said our goodbyes to every one of our friends we could find, then we left the Ronald McDonald House for the very last time.


What I forgot to mention last night was the delicate and incredibly hard task of telling Howie and Monica that we were taking their sister home and that there was nothing more the doctors could do for her. They were devastated. Their little minds had a hard time accepting it and understanding the full gravity of what it meant. I told them we would still do radiation and hope it helped some, but we didn't know if it would work and that if it didn't that she would most likely go to heaven where grandma and Uncle Pete and Grandpa were. The next hard part was that they couldn't tell Ila. They did a great job with that. right up until the end. I let them know how important it was to spend as much time with her as they could which is why they stayed out of school for her last three weeks of life.
Since leaving Maryland, Ila had not been able to walk with her right leg being so swollen. It was now twice the size as her left leg. When we finally arrived home, we had our appointment set up in Albany the next morning and radiology that afternoon. John and I had decided to hold on to a glimmer of hope. The hope that possibly the radiation would bring her to a place that would make her eligible for another trial. Any trial. So when I was in the radiology department getting ready for her simulation, I was concerned about the amount of radiation she would get to her abdomen, not wanting to cause problems for her in the future, where as, they didn't seem to think she had much of a future left. I put my blinders on that day. Sort of. That was on a Thursday. On Friday I took her in for her radiation and laid her on the table. I had to carry her in and out of the house, in and out of the car, in and out of the stroller to anywhere she needed to be. Over the weekend we celebrated Easter. She was couch bound all day. We had friends visit, she did pretty good and enjoyed the visitors. She was upset not being able to walk. With my blinders on, I just kept focusing on her getting through radiation and seeing where she'd be after the 14 treatments we had planned for her. On Monday morning we were back in the radiation room and I lifted her on the table. Tuesday the same, That night she was able to take a few steps. Her leg was noticeably smaller and almost back to it's regular size. The next morning it looked even better. What I didn't want to admit was how very weak she was getting each day. Again, my blinders were on. That Wednesday was a big day for her. We had what would end up being her very last outing. By limo after radiation, were picked up be a limo filled with friends and Howie and Monica and we went to the Pottery Place. She had developed what I would soon find out was c-diff and was in the bathroom every 15 minutes or so, but she was determined. She spent 2 hours painting two statues. A dolphin set and a goldfish. It was there that I got her finger prints done on the charm I wear on my necklace. She made it through the afternoon, falling asleep here and there on the drive home. I started to see she was losing her energy and getting too weak. The next morning it was even worse and she was getting sick, not being able to eat and vomitting. I got her to radiation and as I laid her on the table because she didn't have the strength to move on her own anymore I knew it was time to go talk to the doctor. I brought her up to clinic and told them it was time to stop the radiation. She had a fever and we admitted her. It was time to take off my blinders and see my baby girl in the true state she was in. Skin and bones, with a stomach that was protruding and growing by the hour it seemed. The dark circles around her eyes were getting darker and for the first time I let it fully sink in that she was dying. By Friday afternoon we were draining her stomach for her through her tube rather than feeding her through it and she was in and out of it. She talked about random things to me as if in a dream state. John came up that night and we told him it was time. He didn't want to accept it. That was hard. But we both knew it. She was slipping away and quickly. We made plans to take her home the next morning and set things up with hospice on Monday. At noon Saturday we left our "family" at Albany Med for the last time. I rode in the back seat home with her and carried her in the house for what would become the very last time. We had some visitors that afternoon and evening. I set myself up in a recliner in the living room holding her and decided I wasn't moving until... well, until I had to. We put her in diapers and she just lay limp in my arms. She was still opening her eyes here and there and responding a bit. By the next morning, there was very little response. During the week leading up to this day I had talked more and more about Marissa with her. This was one of her little friends she had a deep connection with that had died years earlier and she always talked about her and about her being in heaven. I talked to her frequently about Marissa in heaven and how beautiful it was there and how she could go there sometime and play with Marissa and see God and Jesus and her Uncle Pete and Grandma. That morning while she was still responding a bit, I asked her if she wanted to go see Marissa in heaven. She nodded yes. I told whispered in her ear it was Ok to go. She could go with the angels to see Marissa in heaven. She stopped responding shortly after and just after 5pm I felt her leaving me and then she took her last breath. I had hoped for a quiet peaceful passing. But it's not something you can prepare for. The heartache was too much to bare. John had left the house for the shortest time and it was then that she chose to leave us. All I could do was scream "NO!! Not now!!" John was home within minutes and I had calmed down and just hugged her tight and kissed her more times than I can count. As much as you think you are ready, knowing it's coming, that moment is more painful than words could ever describe.
What I can tell you is that as I laid her on the couch and cleaned her up and dressed her to leave our house for the last time, I noticed how incredibly peaceful she looked. She had a bit of a smile on her face. She looked so incredibly beautiful it was just amazing. God was with us. She was healed. The miracle had finally happened. At almost 8pm with the darkness outside, there were suddenly the sound of several birds chirping as if it were early morning. Ila loved birds. Everyone there just stopped and we all looked at each other. We knew she was ok.

Over 1000 people came to say their goodbyes to our baby girl. She touched so many peoples lives. It was an incredible and emotional experience to see how many people loved her and our family so much. Like I always say, all you had to do was look into those beautiful blue eyes and that smile and you were hooked.

We ALL love you Ila Bean.

This last day of September, Childhood Cancer Awareness Month, I ask that you take the memory of Ila Jean and all the other children you may know and keep them close to your heart in everything you do. Know how precious each day is and every child is. Do something, ANYTHING to help fund more research for better treatments for childhood cancer. Don't put it off. 46 more children were diagnosed today and it's too late for 7 more children today that died. They need you. They need everyone, to take notice and help.



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Comments

12 Comments

Marge Castee;
By Marge Casteel
We want you to know that we continue to hold you and your family in our prayers. - Family of Jameson Casteel (02/13/1997 - 10/21/2009)
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Joyce Nosker
By Joyce Nosker
Sorry I missed this post until today.
Thank you for sharing the horror of the living and dying of your child who suffered greatly from neuroblastoma. Ila will always be beautiful. Lifting you in prayer tonight.
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Nigel Burrell
By Nigel Burrell
Ila will always remain a beautiful angel. Praying for you all from the U.K.

Nigel xxx
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Raquel Coleman
By Raquel Coleman
Love your family.... & miss everybody dearly. Thanks for your desire & commitment to help spread pediatric cancer awareness! You're awesome!!

Sending bunches of love,
Antoinette, Raquel, & baby sis Mariah
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Kristen Maguire
By Kristen Maguire
<3~As I said before, thank you for sharing Ila with us! Your family has taught us that we need more to help the children with cancer and never, ever take our life for granted! Thinking of you all!
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Carolyn Crook
By Carolyn LeBlanc
What a sweet strong girl, I'm so glad she had friends and family she knew she was going to see in heaven. Thank you for sharing her remarkable life.
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andrea BATTISTA
By andrea BATTISTA
Thank you for sharing your story. I know it's not easy. Ila and Ryan are playing and are at peace :) thanks again for your msg
(Ryan McCormick's aunt)
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Janet Erdman
By Janet Erdman
I will always remember ila and the time she told the Dr. that he should come back later that evening to see you! I went to the 9th floor at Sloan last May to take some prom dresses. I thought of you and ila. Your family touched my heart.
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Anne Gouin
By Anne Gouin
Thank you Jenny for sharing again such a brave and intimate time for you and your family. Thank you for reminding me what is real. Your angel Ila is beautiful. With you in prayer and love
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Mary Ziegler
By Mary — last edited
Thank you for having the courage to write this. Ila is forever a part of our lives and her story will continue to change lives and the world. Love you all...
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