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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

Riding the Waves...

I read a post on facebook that is making the rounds regarding grief. It's from an older gentleman responding to a young person who just lost a dear friend. Comparing grief the the shipwreck and the crashing waves as you hold onto pieces of the wreckage. He states how the waves change and don't come as often, but that they can still leave you breathless and holding onto the wreckage for dear life. I've been thinking about this a lot this week. What comes to my mind when I think of my own experience,is that I don't like to feel like I am surviving a ship wreck. I want to feel like I am surfing those waves. Although, never a surfer, I have always had a fascination with it. If I had lived in the right place, I could see myself out there, growing up on the waves. To me,I am riding that board every day. Some days, I'm just floating on my board, basking in the sun. Calm waters that are relaxing and let you enjoy what is around you. Other days there are those small waves you can ride easily. You get wet, but you dry off quickly in the sun again. Waves come here and there that are a bit harder to ride and can leave you falling into the waters crashing around you, but you like the thrill of the ride in the end. Then once in a while, you get the big one. The wave that is just too big for anyone to ride without crashing. You hold onto your board and do your best to get that ride,but the wave is too steep and you fall hard, tumbling under the water as it crashes over you. However, you come up for air and although breathless and gasping, you do get your breath back and hop back on that board and ride again.


He talked about scars, representing the depths of the love shared with those lost. Growing to love and appreciate the scars which show how well you loved and lived with those who have gone on to heaven. I feel like I have scars like that but I like to think of it with riding those waves. It's the love you shared with those lost that gets you on that board after each fall.That love was so strong an deep that you keep riding those waves for the rest of your life. The waves, no matter how small or big, can bring you down, but the thrill keeps your spirit alive. Their spirit alive. That feeling of the thrill is where you experience that depth of love you have for that person. A love so strong, you'll always get back up to ride again.


I prefer to be a surfer. Riding my grief, not surviving it.


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Comments

11 Comments

e welk
By e welk
Such a beautiful analogy. Thank you so much for your insights, you always put your experiences into words so well. Especially with the difficult experience of grief, which is so misunderstood by those not going through it. Praying for you as you ride those waves.
christina murray
By christina murray
Love you Jen. God always helps you see it through to the end of that wave. Love you much!!!!
Sangye Hatchion
By Sangye Hatchion
Incredibly beautiful. Thank you, Jenny
rick kroeger
By Rick Kroeger
Well said! May the peace of a calm ocean be your's.
sarah jenny
By Jenna
What a touching post, so beautiful
It made me cry. Ila Jean would be so very proud of you.
Sarah Tabor
By Sarah
Did not know Ila personally but she made an impression on my life. Love your description.
Valerie Heck-Hoppes
By Val :)
I would love to read the article too! Thanks for posting...
Mary Ziegler
By Mary Z — last edited
What a beautiful description Jenn. I can see Ila enjoying the surf with you <3
Sara Bohan
By Sara Bohan
Jennifer, you most certainly are a surfer!!! Prayers, love & hugs!!!
Gwen Haag
By Gwen Haag
I will always remember...👼