×

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor ila Jean with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

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

Another year gone by...

Yesterday marked 3 years since Ila Jean went to heaven. I think the days leading up to it were actually harder than the day itself. The memories of each day and the events that happened leading up to that last day. It was all a bit too much at times. Yesterday I felt a calm. A peace within me. I know she's ok. I was sitting in my lounge in the backyard "talking" to her and I had let my mind wander to thinking of ideas for fundraising and awareness and when I realized my thoughts had drifted away from her, I stopped and told her I wanted to talk to her. Then I thought for a moment and decided that maybe the thoughts I was having were from her. Just then, I felt her hug me. I truly did. I remember the feeling so well. I love my angel so very much and I know she is with me always.

So we'll continue to ride this rollercoaster of ups and downs. We love the thrill of the ride just as much as Ila Jean always did. With the scary parts, we know there will be thrilling and fun parts to follow. That's what life is all about. Enjoying all of it. She showed us all how to do that in her short 7 years. We continue to try and live every day like she did.

I love you baby girl. My sweet little bean.
heart
47 people hearted this

Comments

7 Comments

Annabeth Gos
By Annabeth
Oh Jennifer. What a wonderful, touching post. I am so grateful you could feel Ila hug you.
heart
1 person hearted this
Diane Lucas
By Diane Lucas
I always remember with a smile the post about how adamant Ila Jean was when she insisted and said "I boy".....she was so stinkin' cute!!!
heart
1 person hearted this
Gwen Haag
By Gwen Haag
I will always remember your angel. 👼
heart
1 person hearted this
Sangye Hatchion
By Sangye Hatchion
Sending you love and prayers for peace. I will always miss Ila Jean.
heart
1 person hearted this
Sarah Gouzoules
By Sarah Gouzoules
Thinking of you all and remembering your Ila!! Hugs!! Sarah C.O.L.E'S Prayer Team www.colesfoundation.org
heart
1 person hearted this
Janet Erdman
By Janet Erdman
Hey Jenny,
I am thinking about you and your family. Ila was so special. She did teach us all how to live. You are a wonderful Mom, Jenny. Thanks for continuing to share. I care.
heart
1 person hearted this
Sara Bohan
By Sara Bohan
Sending loving prayers, love & hugs!
heart
1 person hearted this