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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 progressing 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 showing No Evidence of Disease!! 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. Shortly after she again became HAMA positive so she continued with scans every 3 months as we waited for her level to come down. Round 6 and final round of 3f8 was finally 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 to remove the tumor at Sloan on May 16th then started her first round of high dose chemo. She finished 2 more rounds of high dose chemo at Albany Med and stem cell harvest back at Sloan. Ila developed PCP pneumonia in Albany and was transferred to Sloan in mid August where she recovered. She did her first round of high dose 3f8 but was HAMA positive 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. Back at Sloan she progressed through one round of standard chemo. After not many promising options, we chose to bring her to the NIH in Maryland for a clinical trial where she progressed and didn't finish the first 23 day cycle. With not one option left in the country due to her rapid progression, we took her to Sloan to discuss radiation where they advised us to take her home. Less than 2 weeks later, 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 & central line placement 7/5/11 stem cell harvest over 3 days 2/2/12 - g-tube placement

Along with numerous blood transfusions and infections and countless trips to the clinic, she was inpatient over the years for days and weeks at a time. Sometimes with only weeks, days or even hours in between admissions. She grew up in the hospital. 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. Because of the hearing loss she was in speech therapy from the time she was just 2 years old.

Ila Jean weighed 33 pounds at her 18 month check up just 3 weeks before her diagnosis. Granted she had a tumor we were unaware of. When she died at the age of 7, she again weighed 33 pounds. Cancer is a vicious disease that will strike anyone at will no matter age, race, gender or class. I was aware of the horrors of cancer in adults having lost my mother and many other older relatives, but was like many others in being minimally aware of children with cancer. It was sad to see them and their bald little heads. Pay attention for the moment, feel bad, want to support, then move on to more happy thoughts and my life. Until the day it was my child. It can happen to anyone and it can happen to you. Don't shy away. Be aware and stay aware. Support the movement to bring childhood cancer to the forefront and get the funding and support it so desperately needs. Don't find out when it's your child sitting in that hospital bed and there are no options left to save them because there isn't enough money going into research for better treatments that could save their life.

Latest Journal Update


I feel I'm sinking into the daze the holidays bring every year now. I'm here. I'm in the moments and participating, but a part of me is in a bit if a daze thinking of Ila with every little thing. Tonight was the kickoff to our holiday season with our city's Christmas Parade. I was looking forward to it and happy that Howie would be in it with his jazz band for the first time. Once I got there though, all I could do was think of Ila. She loved the parade. She should be here. So that made aa but harder to relax and enjoy, but I tried. Unfortunately, it didn't last long. Some rude people crossed the street and stood right in my line of view next to me. I asked multiple times for them to back up, sit down or move with no luck. Howie was Iun the front Iof the parade so I got up took his picture and sat back down to attempt to enjoy the rest. Quickly, my tolerance dissipated and I realized I had to leave before I made a scene. I have no tolerance sometimes for people with no brains or manners. So not the best kickoff to the holidays. I let the girls hang for a while and went to a friend's store down there and chatted but grabbed them and went home before the parade was over.
Thanksgiving will be quiet as usual. Just the four of us. Of course there should be five and that will be on my mind all that day. Not like it isn't most of the time anyway. The following week, my mother-in-law moves into our flat downstairs. The bright side! I am really looking forward to that. The kids will li 've seeing grandma and pop every day too! I'm hoping that's when the spirit of this Christmas pops out. We have new decorations this year and plan to do lots more than we usually do. The best part this year, is John's sister is coming up from Virginia with her family to stay with us over Christmas!!! Babies in the house again!!! Oh how I wish Ila were here for this. She would be over the moon with her little cousins. So as much as I am finally looking forward to Christmas once again, I will no doubt be in that daze the whole time. Ila should be here.
Her spirit is here. She is always with me and I feel her. But it's not the same of course. I want to see her face light up. I want to hear her sing carols and open presents. I want to hug and kiss her.
Just felt the need to post. Not sure why. But a glimpse of my heart to share.

Love you Bean.
49 people hearted this



Kim Prokop
By Kim Prokop
Always thinking of you and Ila....xoxo

Love from NY
Kim and team Hannah
Stephanie Bledsoe

Your words resonate with me... I have a house full of boys and it's great seeing them grow and their excitement for the holidays. We're decorating the tree Friday. This time of the year is also bitter sweet without Aisy, missing her and imagining how she would be at this age, and seeing all the things as she would have loved them. In that way they are always with us, but man is it tough. Wishing you a very happy Thanksgiving and Merry Christmas! Love, Stephanie
Joyce Nosker
By Joyce Nosker
Praying for you.
Sangye Hatchion
By Sangye Hatchion
Sending you love and prayers for strength and peace, Jenny. Remembering Ila Jean with a smile, a chuckle and a wish that she were here for us all.
Annabeth Gos
By Annabeth
Thank you for sharing. A glimpse of your heart is valuable.
Karen Hohertz-Jacobs
By Karen Hohertz-Jacobs
Hugs and prayers...glad you share what your heart is really feeling and about. We all remember Ila Jean too...
chuck bean
By chuck
Thank you for the precious gift of your openness and vulnerability.
Keri Dezell
By Keri Dezell
So glad you posted. Your heart never lies. So glad you listened to it.
Prayers that you continue to feel your Ila with you when your Christmas spirit Pops out... and I believe it will. I think Ila's going to see to it.
Mary Ziegler
By Mary Ziegler — last edited
Thank you for sharing. I wish there were words I could say to help or make it better. Ila was the most amazing girl and I know she will be right there with you, celebrating and filling your holidays with her immense spirit and love. We love you all.
Janet Erdman
By Janet Erdman
Jenny, I am glad you posted. I think of you often. I know the holidays are hard. You are an amazing Mom and you do so much for others. Take some time for yourself. Sending a hug.