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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

Happy 10th Birthday Ila Jean!

Today my baby girl turned 10 up in heaven. Instead of celebrating her birthday bringing cupcakes to her classroom in school, John and I brought balloons and flowers to her grave in the cemetery. Instead of singing Happy Birthday to her and watching her blow out candles, we sang Happy Birthday and then sat in silence wishing she were there to blow out a candle. It was an emotional day for each of us. Monica kept it more to herself today, only sharing it with a couple of friends. Howie on the other hand, decided to share it with everyone and wore his shirt with Ila's picture on it. He was able to share her with everyone as they all asked him about her. One of his teachers has a new baby girl that they named Isla, pronounced the same way. If you really never knew, it is "eye-la". So it was a nice day for him. He liked talking about her. This was a bit of a switch this year. Usually it's the other way around with the two of them. John and I just spent the day together for the most part. The cemetery was the hardest. It's more of a reality check for me when I go there. Strange in a way. I feel her so close to me all the time, but when I go there, I feel that gaping hole in my heart so deeply. So painfully deep. At least today I did, more than usual. I wonder sometimes if it's good that I let myself feel that pain so deeply. I usually protect myself from it so I can function. I guess I can only ignore it for so long.

This year we are once again collecting toys for Albany Med's Children's Hospital that we will deliver for Valentine's Day. This Saturday my house will be open to anyone that would like to bring over a toy between 2 and 4pm. At 4pm, for the first time ever we will be doing a balloon release in memory of Ila Jean. I always wanted to do that and decided this was the year to do it. I hope you are able to join us if you live locally and if not, I know you will be there in spirit. You could always get your own balloon and release it at the same time we do! Imagine that, balloons from all over the country if not other countries too, going up to the heavens for her birthday! She would love that! Double digits Bean! 10 years! I can't believe it. 10 years since she came into my life and almost 3 years since I held her in my arms for the last time. Seems like a dream.

Happy Birthday baby girl. I love you so very much my little bean.
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Comments

9 Comments

betty mclaughlin
By
DO U HAVE A FACEBOOK PAGE FOR iLA.?? I used to go to the cemetery in the beginning for my daughter.. but in the past yrs. it is less.. maybe one time a yr.. she was not a child she was 29 when she died ..its been this yr 17 yrs.. where do the yrs go .I know what it feels like.. Jennifer was not sick .. she met a bad death .. i didnt get a chance to say goodbye... gramma betty
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Gwen Haag
By Gwen Haag
Happy Heavenly 10th birthday Ila! I remember...
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Anne Costa
By Anne Costa
Happy Heavenly 10th Birthday Ila! <3
Anne & Noah
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Carolyn Crook
By Carolyn LeBlanc
Happy Birthday to your beautiful girl, a sweet angel we never met, and will never forget.
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emily welk
By Emily Welk
Happy 10th birthday Ila Jean!
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Rebecca Wright
By
You know that your little girl always has a special place in my heart.
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Kayla Dickhoff
By Kayla Dickhoff
Happy birthday sweet girl!!! I'm sure you've met my jocy! And I'm sure she's helping you celebrate for today is her brother Reid's birthday too! He turned 6 today.

We will be with you guys in spirit on your balloon release day!!! Those days are pretty special.

I'm glad you and your husband were able to share the day together. Sometimes sharing your grief with others is the hardest part of a day...

Thinking and praying for you all!!!

Love,
Kayla

www.caringbridge.org/visit/jocelyndickhoff
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sarah jenny
By Jenna Hoff
Your little girl sounds like such a little angel, first on earth and now heaven. I live in Canada and will think of your precious girl on her birthday.
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Kim Prokop
By
happy birthday in heaven Ila Jean!

Love from NY
Kim and team Hannah
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