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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

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For some reason this past week has been really hard. I have had frequent dreams of Ila and she is different ages in each and she dies in every one of them. I think of her so often and the memories are just hitting me so much harder than they usually do. I miss her so very much. I want my baby girl. I see her friends and they are growing. I have to remind myself when I talk to them that they aren't 7, they are now 10 year old's finishing 4th grade, not 1st. I want so badly to know what Ila would look like now, be like now. It's just been an overwhelming week. Now tonight it just has me wanting to write and more than that it has me wanting to rant and get on my soapbox and scream. I won't go as far as that, but I do feel that when I get like this it's for a reason and the words usually come that I think people need to hear and I hope my message may make a difference. With this is a photo I really felt the need to post. This picture has been a very personal one and I think I may have included it with a photo cluster only once quite a while ago on a facebook campaign for awareness. It was taken the morning I took her home from the hospital for the last time. She passed away the next day. The next statement which I added to her "story" above on this site will hopefully show why I felt the need to post it and the impact I hope it will make. Thank you as always for continuing to follow our journey.


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.


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Comments

21 Comments

Joyce Nosker
By Joyce Nosker
Keep up your efforts to preach what most people don't know about. Praying for you.
sarah jenny
By Jenna H
She was so incredibly lucky to have such a wonderful, devoted, loving mom. Isla had to survive and face things no one should ever have to face, much less a sweet and innocent little girl. But Jennifer, know in your heart that you made her world as happy and wonderful as it possibly could be given such a terrible disease for her entire 7 years. I am just so sad for your loss.
Sue Koslovsky
By Sue Koslovsky
Our little granddaughter, Kate, at the age of 2 years, 9 months, was diagnosed with stage 4, high-risk Neuroblastoma. She is completing Kindergarten this year and is on a schedule of scans every 6 months including bone marrow biopsies. I am sincerely sorry for the loss of your little daughter. Research and awareness of pediatric cancer need to be the focus of the American public. We had no knowledge of Neuroblastoma and its devastating effects on children until Kate was diagnosed. Please keep in touch and know that your faith in GOD and HIS love will give you peace eventually. Please know that your message about pediatric cancer will not fall on deaf ears. We pray for your courage and strength to be a messenger for GOD to spread awareness of this terrible disease. Sending love and positive thoughts from Kate's grandparents.
Kayla Dickhoff
By Kayla Dickhoff
I have a picture of Jocelyn like that..taken from the back as she sat naked on the floor. I had never seen so many bones sticking out of her before...maybe I just hadnt noticed.
I have the same problem of seeing Jocelyn's friends and how big they are! Kids who I know are her age, I mistakenly say "he's 7 right" or "she's 7"? And of course their parents correct me because they're not 7 anymore (like Jocelyn always will be), they're 9!!! That hits me hard some days.....other times its just going to school to be with her brother (who is almost done with k) and knowing that her school seemingly forgot about her! Jocelyn died July 6, 2013, right after she finished first grade. And for whatever crazy reason, I thought that maybe they'd honor her in last years year book. I mean, how can a whole school forget a girl so tiny yet so huge in personality!!! (Many times she was given a clipboard and pen and was responsible for writing down the names of kids who ran in the hall!!! And for giggles, many of the adult staff and teachers would run in the hall just to see what she would say to them!!! ;-) she was very good at the job she was given! ;-)

I wish we would have had the opportunity and privilege to meet ila and your family!!! She was a bit older than Jocelyn but I know they would have gotten along well! I like to think that they're friends in heaven!! :-)

Keep fighting for what you believe in Jennifer!!!! And let ila guide you when you're feeling stuck! And thank you for all you're doing to help fight childhood cancer!!!!

Sending hugs from one mom to another!
Kayla

www.caringbridge.org/visit/jocelyndickhoff
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Pam Lanham
By Pam Lanham
May God bless you and your loved ones. As you said, no one can understand what you've gone through unless they have traveled down the same road. My thoughts and prayers are with you as you bravely face each new day........
Rhonda Mathis
By Rhonda Mathis
Praying for God's overwhelming peace and comfort to hold you tightly!
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1 person hearted this
Rhonda Mathis
By Rhonda Mathis
Praying for God's overwhelming peace and comfort to hold you tightly!
kim hunter
By kim hunter
Ila was so brave. These children go through so much on these journeys.
Marti Carroll
By Marti Carroll
Oh Jenny, Ila often visit my heart, the stinkin' cute little bean
chuck bean
By
Always share, and we will always pray.