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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

A New Transplant Plan

It's been over two months since I've updated this site--we've been very busy!! First, Juliana had a very Happy 14th birthday on December 4th. She celebrated with her family and a few friends and had a party at a ceramic shop. She also had a very Merry Christmas!!

Since I last updated her oncologist decided to change the chemotherapy protocol (since she had such bad GI side effects from her last round of irinotecan, vincristine and temozolomide). She had a round of topotecan and cyclophosphamide the week of November 30th to December 4th and just finished another five days of these two chemo drugs yesterday. The new protocol still has nasty side effects--fatigue, loss of appetite and VERY low blood counts (she needed 5 blood/platelet transfusions after the last round), but it causes no GI problems.

On December 30th Juliana had a PET/CT scan which showed that although more than 90% of the original large tumor was gone, there was a small (2 cm) new tumor near her right rib cage around T12. She had a needle biopsy on January 8th that was positive for cancer. She can't get a bone marrow transplant unless she has stable or decreasing disease so after talking with her doctors at both Sinai and Johns Hopkins hospitals we've decided to do radiation therapy to the new sight. She has a planning/simulation scheduled for the radiation therapy on January 20th and should be starting therapy the following week. She is going to get electron therapy this time since the new tumor is close to the surface and also this therapy can be compressed into as little as 5 sessions (instead of 5-6 weeks for photon therapy).

We have also (finally) got some good news from overseas. Juliana (and Kristina's) birth mother, Irina, was tested in Belarus (we now have a Belarusian doctor working with us) and we found out on Thursday afternoon that she IS A MATCH for Juliana. Unfortunately she needs to start a new "government" job the beginning of March so she needs to travel and be home before then. (Belarus is a communist dictatorship--if she doesn't take the job they have "given" her she'll be fined a lot of money.) We spoke at length with the nurse coordinating the transplant at Hopkins yesterday and have come up with a plan. The entire schedule hinges on Juliana getting a new PET scan on February 10th (six weeks after her last one) which shows stable or decreasing disease (it can't show any new disease). IF that PET scan is good, Irina will arrive on February 15th and have a blood test done at Hopkins on February 16th (this test can ONLY be done in the US and results take three days). Assuming good results for this test, Juliana will be admitted to Johns Hopkins on February 19th to start a week of chemotherapy and a day of full body radiation therapy. Then, Irina will have the procedure to harvest bone marrow on February 26th and it will be taken upstairs and given to Juliana the same day. Irina will return to Belarus on February 29th and Juliana will remain in the hospital until her bone marrow recovers and her white blood cell counts are high enough to safely leave. After discharge we'll have to stay in an apartment close to the Hopkins for about another two months.

Please pray with us that everything works out--as you can see there are a lot of things that MUST all happen for this plan to work!!
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Comments

16 Comments

Rebecca Douglas
By Rebecca Douglas
I am so sorry you are going through this again Juliana. I know you must get discouraged and exhausted and I do not think that is surprising. It is ok to feel that way sometimes, but keep on fighting and maybe this time will be the last. Hang tough, Juliana. You can do it! I will be thinking of you and your family.
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BJ Miller
By BJ Miller
Many Prayers For ALL Things To Work Out In Juliana's Favor!! Prayers For Juliana To Show Positive Results From Treatments, And For Your Beautiful Family And Maddie As Well!!
Lindsey Huff
By Lindsey Huff
Hey Juliana
I'm praying for you to get better what's ur address so I can send u stuff as In gifts
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Nick Gouzoulis
By Nick Gouzoulis
My thoughts and prayers are with you. God bless you.
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Suzanne Hirtle
By Suzanne Hirtle
I am SO EXCITED, not to hear about the new tumor but to hear that her mother is a match!!!! I have been praying for her and have been keeping my Bible study updated!!!.
I am glad that it is only 5 days for this treatment not endless weeks of radiation!!! February is just around the corner! Can she or you, Tammy, have visitors once she is out of the hospital or while she is in? Thank you for the update. Like I said I have been praying for Julie or Juliana.
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Bonnie Ermilio
By Bonnie Ermilio
WOW, John! I amazed at how you get things organized and done. I'm praying that everything goes the way it's supposed to go. I'm sending LOTS of hugs, love and prayers to Juliana!! Who will be staying with Juliana for the two months?
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Claire Newton
By Claire
I have been following your journey for YEARS, sweet Julie, and my heart still swells when I see you. You have stolen my heart, and I love you more than words can express. You are a miracle, a hero, and a blessing from God.

Much love, now, forever, and always...
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Kate Blais
By Kate Blais — last edited
Prayers to Julia and the entire family.
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Shirley Bennett
By Shirley Bennett
I will pray I want this for her she is so deserving! Juliana you are a special gem! Keep strong and keep the faith. I love you sweetheart.
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