For three years, Ila Jean was our cancer free survivor. She fought through her first relapse on May 5, 2011. Still going through maintenance treatment Ila Jean relapsed yet again with on December 21, 2011. Ila battled with all she had left until God took her home to heaven on April 15, 2012.
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 round5 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 3f8antibody 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 and10 were added as outpatient along with 14 days of radiation to her right hip. Scans again showed disease, however much improved. The11th 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 is 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 3months between scans without Chemo and the week of April 13, 2009scans were clear. Still HAMA positive, she did Rituxan again in May2009. 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 3months and was clear. On May 5, 2011 Ila relapsed with a localized abdominal tumor. She had surgery at Sloan on May 16th. She finished 3 rounds of 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, 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 & 7/5,6,7/11 - 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
Dec 19, 2013 7:16pmI've been wanting to update all of you on how our family has been doing. We've been quite busy lately actually. I'll start with the kids. Monica is getting ready for the school play. She has a good part and her song is going to steal the show! I can't wait! She's been doing great with her singing lately. She's finding her voice and her style. There's something magical that happens to her when she gets on stage in front of a crowd to sing. She's got talent. I'm so proud. She is also one of two students picked from her junior high school for the All County Choir this year. She's very excited. So am I!
Howie is still paying his heart out on his sax. He is actually playing it as I type this. He is such a natural musician. He's got the rhythm and he's got soul. He's my jazz man. He also got chosen for All County but for band of course. My talented kids! His music teacher sees it too. He was generous enough to give him an old sax from his personal collection and the two of them are refurbishing it together as a project. It's beautiful!
John is doing well. He's been real busy working and helping me with the kids. He's the best husband and he loves us all so much. His neck is doing ok. He's got to be careful still and he gets sore, but he's doing pretty good.
Now for me. I am finally working again! I got a job as a home care nurse taking care of children. I am so happy and love my job so far. I have two different patients. One I see just one day a week, the other three to four days a week. It's been an adjustment getting used to working again and working later hours compared to my dialysis days when I got out before the kids did. Now I don't get home until after 6. John akes care of dinner now. It works. I love my work though. I went into nursing to help kids and now I finally am in a real way.
In regards to my recovery, well, I'm doing pretty good. I do have headaches again, but that is common and they are not nearly as bad as they were before surgery. I'm still walking. That's most important to me.
So on to Team Ila Jean. This year we did a Childhood Cancer Awareness float for out local Holiday Parade. It was a huge success and we made a very big impact. We put our big Gold Ribbon Tree on it and it glowed brightly. A few of us moms rode along with our kids. We all held signs with kids pictures on them. Us moms held our babies. Three of us held our angels. It was strange watching it hit people over and over. They'd be smiling and reading our banners and then the pictures until they saw "called home" and the smile instantly disappeared as they realized our child had died. BAM! Impact!! It worked!! The tree now sits in my front yard again this year. We wanted to put in one of our busiest malls, but we didn't stop to realize we needed a fake tree. So that will happen next year. So this is the picture of the tree that you can see from far down the street. It's so bright! Over 350 ribbons, each for a child fighting or a child in heaven.
So you might be wondering how we're handling Christmas this year. To be honest, we're doing much better this year. We are all filled with the Christmas spirit again and I think Ila Jean has something to do with it. She loved Christmas and although we have our moments and always will, we can't help but love and enjoy the season for her. I see and feel her everywhere. I know she's with me. With all of us. She still gives us little signs here and there and it always makes me smile. Most of all, I am thankful that I can still close my eyes and literally feel her in my arms. We're staying at home this year, just the four of us. I think we need to make a new Christmas tradition for just us to carry us on. So we're talking about different ideas. We'll see. It will be nice though. It's nice to be looking forward to it again this year.
Ila Jean has her own little Christmas trees this year too. I decorated her grave. Monica and I put a small tree with red bows and gold ornament balls with a gold dove in each of her vases on the sides of her stone. It looks pretty. I know she's smiling down on it.
So there you have it. Our holiday update. We're doing well and looking forward to Christmas. We wish all of you a very Merry Christmas. May you have a wonderful time with your family and friends making beautiful memories to cherish.
Guestbook signed 7 times today
ila Jean's CaringBridge site is made possible through donations. You can make a donation to CaringBridge.