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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

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We got through another Christmas season without Ila Jean here physically. However, I felt her with us in spirit. She kept me company while I was sick with the flu. Yes I literally got the flu on Christmas. So I spent a few days quarantined in my bedroom. All alone, I thought about her a lot. I had her baby doll with me one afternoon. I just felt her very close to me the whole time. I always do. I guess being alone with no distractions helped me realize how very close I still feel her with me. I am so grateful for that. I thought about her grave often too. I meant to go there and put flowers in her vases for Christmas and just never got there. The one time I did in early December, one very cold night, the inner vases were frozen solid in place. Honestly, I haven't been back there since. It's not that it's hard for me to go there. It isn't at all. I like to go. It always makes me feel close to her. That's why I started to wonder why I don't go there more often. I have friends that visit their children's graves almost daily. I never did. Granted, I used to go quite often in the beginning, but not for long. Just when I started to feel the tiniest bit of guilt over this, I realized something. She is with me. I feel her with me so very strongly, that I don't need to go there. All I have to do is close my eyes and I can feel her in my arms or laying beside me cuddling. God gave me 7 years with her to build such a strong connection to her that nothing can break it. Not even her death. I miss her dearly. To watch her dance and run and to hear her voice. What I wouldn't give to smell her beautiful skin. I so wish I could have seen what she would be like as each year passes. But. The gift I have is to hold close to my heart my precious baby girl, forever 7 and forever my little girl. Memories only of her being little. No other memories to cloud those. With those, memories that break my heart, but all part of her and what made her so very special.

Our family is doing well overall, despite the constant little bumps in the road that always seem to pop up for us. Monica is doing great! I am so unbelievably proud of her right now. She got the part of Queen of Hearts in Alice in Wonderland at school. She joined Student Council and is running for President. this past week she submitted her essay for the Smart Scholars Program for high school. I really feel it in my heart that she will be accepted. If she is, she will be a college student as well as high school student starting this summer with her first college course at our local community college. By the time she graduates she will have earned 24 college credits!!! At no cost!!! Please say some prayers that she gets in!!!
Howie is doing great! He is still playing his sax. He took it upon himself to make some changes in his schedule to get into an honors class for biology and into a night school class for spanish so he is now able to play in concert band as well as jazz band. He is a very determined boy who wants to go to college for music. His goal is to be a professional sax player!! I am so proud of him for finally stepping up and taking on more responsibility for himself.
John is doing well an busy with work. He and I are feeling the cold. Him with his neck fusion and me with my neck to skull fusion. We make a really good pair! I am still at my job and loving it. Dealing with some health issues as usual. I was diagnosed with Diabetes type II last year and this week was put on metformin. I was not happy about that, hoping to control it with diet. Who was I kidding. My sweet tooth is ginormous! Now I am seriously getting on top of it. There is no way I will go on insulin. I also started having trouble with my right knee and just to make me feel old, got diagnosed with arthritis. Oh well. Par for the course.

So coming up soon is Ila Jean's birthday on February 4th. This year would have been a big one for her. Double digits. I can't believe it will be 10 years since she came into our world. Once again we will be collecting toys for Albany Medical's Children's Hospital for the kids there on Valentine's Day. Anytime between now and the 12th, you can drop off a toy to our house. We'll have an open house to celebrate Ila on the Saturday after her birthday, February 7th with a balloon release at 4pm in the park across the street from our house. I hope, if you're local, that we'll see you there!

Love you Beans.
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Comments

8 Comments

betty mclaughlin
By betty mclaughlin
does ila jean have a facebook site. so more can know about toys being given to the albany medical childrens hospital. i am glad you have other children. so you dont have to always think about your loss. i am glad they are doing good. and hopefully flu time is over. gramma betty
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Mary Ziegler
By
Jenn it was so nice to get an update and read about your wonderful family, you must be so proud! Ila has such an enormous spirit, we feel her and think of her all the time.

Love you all and we hope to make it for Ila's birthday celebration <3
Love,
Mary
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Gwen Haag
By Gwen Haag
I remember...👼
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chuck bean
By Chuck Bean
Do take care of yourself you can make the sweet tooth subservient to your will. I work in a nursing home and see the long term effects of diabetes NOT taken care of, and it is not good. Also the arthritis will improve with a less "sugar" diet. I know you can do it, blessed by the update and God's hand on your family.
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Keri Dezell
By Keri Dezell
What a beautiful and touching entry. I am
so incredibly grateful that you are feeling a sense of peace, although I'm sure your days are far from easy. Your strength and your positive outlook are to be admired as you still contend with so much but remain strong and appreciative none the less.

May GOD's grace be yours always.
May you always feel you beautiful baby girl with you.

❤️🙏
Keri & MY FRANKIE
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sarah jenny
By jenna
You don't know me, I am just a stranger on the internet. But I am so touched by your comments about your beautiful daughter. You are right, she will be with you always in your heart.
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Annabeth Gos
By Annabeth
What a beautiful post. Thank you for sharing. Happy soon-to-be Birthday, Ila Jean!!!
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Sara Bohan
By Sara Bohan
It is wonderful hearing about how well you are doing. There is no doubt in my mind that Ila Jean is with you. I have never felt that you have to go to the cemetery to feel close to a loved one. They are always close to us and in our hearts. I wish I lived closer to come to your open house to celebrate Ila Jeans's birthday. I know it will be a beautiful day. Keep looking up! Prayers, love & hugs!
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