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Juliana’s Story

Juliana was diagnosed with stage 3, group 3 Alveolar Rhabdomyosarcoma on 3/7/07. She had 6 weeks of radiation therapy and 14 rounds of chemotherapy. Julie relapsed on 3/17/11 and received another 12 rounds of chemotherapy and 5 more weeks of radiation therapy. Julie relapsed a second time on 6/5/12 and received 12 more rounds of chemotherapy and 10 more weeks of radiation therapy. She relapsed a third time 3/17/14 and after surgery that removed 90% of the new tumor had five more weeks of radiation therapy and four more rounds of chemotherapy. She was on maintenance chemotherapy when she relapsed a fourth time on 7/12/15. Juliana is currently getting more chemotherapy. Please keep Julie in your prayers!




Until Sunday, February 18, 2007 we had no idea there was anything wrong with our beautiful, happy, confident five-year-old daughter. She came into our room that morning complaining about a "bump" under her right arm. The bump turned out to be a swollen lymph node and we discovered the next day at the pediatrician's office that she also had a tumor on her right forearm. After x-rays and an MRI, we received that awful call from the doctor--it appeared the tumor was cancerous and that it had matastisized to the lymph node. The next two weeks went by in a blur as we drove back and forth each day to the hospital for exams, blood work, numerous scans, a biopsy and surgery. Julie's treatment will include weekly chemotherapy for 42 weeks, daily radiation for six weeks and possibly more surgery to remove the tumor after is shrinks.

We adopted Julie from Minsk, Belarus on August 26, 2003 when she was 20 months old. We believe that God placed her in our family for a reason. Had she remained in the orphanage in Belarus, she would not have received treatment for her cancer. Instead, God allowed her to be adopted into an American family where some of the best medical care in the world is within driving distance and surrounded her with many, many loving, caring family members and friends.

Latest Journal Update

More Chemo Scheduled

After spending seven days in the hospital with a neutropenic fever and severe, chemo induced, diarrhea Juliana was discharged on August 4th. She went back to the hospital this past Wednesday, August 12th for a scheduled bone marrow biopsy. When the doctor checked her counts, her platelets had fallen to 17,000 (normal is 150,000 to 400,000). He almost cancelled the biopsy because he was afraid she would bleed a lot, but in the end Juliana was sedated, the biopsy was performed (a large needle is inserted into both hip bones and bone marrow is withdrawn) and afterwards she got a platelet transfusion. Her blood work also showed elevated liver enzymes so she had to go back to the hospital Friday for more blood work. On Friday her platelets were much higher (71,000), unfortunately so were her liver enzymes (AST and ALT) plus her hemoglobin had dropped to 8.2 (if it's under 8 she has to get a blood transfusion). Her oncologist and I went through each of her medications and checked to see if they can cause elevated liver enzymes--all three of her chemo drugs, plus four other medications she's taking can cause this! Based on when the problem started and the fact that it's a drug Juliana has never had before, we think fluconazole (anti-fungal drug) is the culprit so I stopped giving it to her on Friday and also didn't give her Bactrim (preventative antibiotic) this weekend. In addition we are also starting to wean her off of dexamethasone (steroid) and gabapentin (neuropathy drug)

Juliana is feeling really tired (she's probably anemic by now) and her belly is hurting (we think because she's now constipated again from all the morphine). We tried stopping the morphine yesterday and so far she hasn't had any pain!!! Juliana is scheduled to have chemotherapy each day (Monday through Friday) this week IF her counts are all high enough and IF her liver enzymes are lower. The chemo has already been delayed a week so we really want to be able to start the next round.

Please pray that Juliana's liver enzymes go back to normal levels, her counts are all high enough for chemo this week and she remains pain free without morphine. We plan to do scans after she finishes this next round of chemo to see how much the tumors have shrunk.
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Comments

12 Comments

Leslie Ewing
By Leslie Ewing
This message is for Juliana's parents and siblings. First, thank you, Tammy, for keeping us up to date on this site, and thank you, John, for posting videos on youtube. These posts take time to make and post, yet you have an active family to take care of.

I just found Juliana's story last week, and now I care very much about this little girl and her beautiful family. My prayers are for you, her parents, that you find strength. I also pray for Juliana's siblings as they continue on their path to maturity.
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Shirley Bennett
By Shirley Bennett
I truly hope that Juliana's liver enzymes goes back to normal. She's a determined young lady I admire her so much. She's a fighter she will win this battle.
Jennifer Green
By Jennifer Green
Praying for Juliana's counts to be high enough for chemo, her liver enzymes go back to normal, and she is pain free without morphine.
Jennifer Green
c.o.l.e.'s prayer team
www.colesfoundation.org/
Nick Gouzoulis
By Nick Gouzoulis
My prays are with you.
BJ Miller
By BJ Miller
Many Prayers For You Ms Juliana!!! I Will Pray That Your Liver Enzymes Go Back To A Normal Level, And That You Continue To Be Pain-Free!!! You Are Such An Inspiration To So Many Of Us!! Much Love To You And Your Family.
Amanda Gilliams
By Amanda Gilliams
Prayers continuing~
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Gail Doyle
By Gail Doyle
Praying all is well with Juliana and she is feeling better
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Sandy Daron
By Sandy Daron
How tough. I pray Juliana's counts will be good for chemo and and taking her off the antifungal works to lower the enzymes.

Love ya,
C.O.L.E.s Foundation (Caring Openly, Loving Eternally)
Say A Prayer, Send A Smile, Make A Difference
https://www.facebook.com/ColesMakesADifference
www.colesfoundation.org www.kidsunitetofight.com
www.colespages.org Email: sandy@colesfoundation.com
Claudia Ketcham
By
Juliana, you are in my prayers. I am especially praying that your liver enzymes are better.
Suzanne Hirtle
By Suzanne Hirtle
Tammy. You are so strong. Juliana, you are even stronger.
Joshua was taken off bactrim when they thought he had relapsed. I am praying for high count numbers so that you can make it through this week!!!

You are in HIS hands