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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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It's been a while since I have been on here. I think the longest pause in entries yet. It may be like this more often as I am going to be putting my writing skills to work. I have finally figured out what direction I want to take in writing my book. I have been trying to figure it out for years. I knew in my heart I am supposed to write, but just wasn't sure about what, or should I say, in what direction, with what purpose or point. I was simply talking to some co-workers this morning when I realized it all comes down to one word, WHY. As soon as I said it, it clicked. It was like it all came together instantly and I knew it in my heart, that this is what God wants. I knew he will be guiding me as I write this so I can help others. That is all I have ever wanted to do. I am getting very excited now and just trying to think how to start. It's a colossal task, but worth it. I know that through it I will also find more healing. I can feel it coming. Please keep me in your prayers as I start this new journey.

On the homefront, things are good. Howie is doing very good in high school and Monica is loving her last year at her school where she has been since kindergarten. She is excited to start play practice this week as she got the part of the Queen of Hearts in Alice in Wonderland. Howie is busy with jazz band and doing great on his sax as usual. We just spent a lovely Thanksgiving in Virginia with my sister in law, her husband and little Amelia Bean. It was a lot of fun getting to know Amelia now as a toddler. We also spent some time with Ila's true love, Kieran and his parents. Always a great time there. We're all looking forward to a nice Christmas at home this year. My sister, Kathy, and her husband are staying with us, coming in from New Hampshire, so that will be a lot of fun. I haven't had a Christmas morning with her since we were kids.

Work is going great for me. I absolutely LOVE my job and everyone I work with. It feels great to like going to work! It helps seeing so many cute kids every day too! I can't believe I have been there over 8 months already. This year has gone by so fast. I had wanted to do the Gold Ribbon tree this year in the mall and at my house and in the parade and ended up not being able to do any of it. It was too complicated to get into the mall. I was too late getting into the parade and at this point I just don't have the time or energy for the tree in the front yard either. What it comes down to is that Team Ila Jean may need to become a legitimate non-profit in order for me to do everything I want. Yet, working full time makes it so much harder to do everything I want. Still trying to figure it all out. In the meantime, however, Monica and I are once again going to do our cookie sale for Cookies for Kids Cancer this month. Last year we raised $325 and I hope we do as well if not better this year. I'll post the info below. Next up in February will be our annual Toy collection for Ila's Birthday and then it's all about St. Baldrick's which will be held on May 2nd this year. John has been growing his hair since the 2013 event and it's down to his shoulders! We hoping to raise some big bucks to shave his hair this year!

Thanks for continuing to check in on us. We appreciate your thoughts and prayers.


Christmas Cookie Fundraiser - local only for home delivery. Sorry I am unable to do shipping, but will gladly accept donations!

$15 - 2 dozen

Chocolate Chip
Snickerdoodle
Sugar
Ila Jean's Mix (all 3)

email orders to teamilajean@yahoo.com

I have a giving page on the Cookies website but it's not working at the moment. I will post it soon.
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Comments

4 Comments

Joyce Nosker
By Joyce Nosker
God be with you in your writing!
It's wonderful to read that you love your job. Hope you bring in tons for the cookie orders.

www.caringbridge.org/visit/larrynosker
Sandy Daron
By Sandy Daron
Jenny,

I am soo glad things are going well. I bet your book will be great!!

Happy Christmas season!

Love ya,
C.O.L.E.s Foundation
(Caring Openly, Loving Eternally)
www.colesfoundation.org
www.kidsunitetofight.com
www.colespages.org
Email: sandy@colesfoundation.com
Terri Joos
By Terri Joos
Praying for your family this Christmas season.
May God bless & keep you all.
Hugs, Terri
Deborah Scully
By Deborah Scully
Your book sounds amazing. Only someone who has walked this road is qualified to write a book on " WHY". I can't wait to read it. Merry Christmas.