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Julia's Story
Julia (Juju) was only 5 years old when she was diagnosed B-Cell Acute Lymphoblastic Leukemia (B-ALL) and below is her story:
Julia had just turned five years old in December and by all accounts, she was like most children her age. She went to school, had lots of friends, and loved to play, sing, dance, jump, and run. She is incredibly social. She's been this way since she was a very little baby. We never knew what she was saying but she always had A LOT to say. She truly knows how to make people feel special and loved even if she just met you at Target. Her family recently started saying her superpower is making people happy and that could not be more true!
Juju has limitless energy! She is always on. From the second she was walking, she was running. Her mother, Grace Siegried, always jokes and says she is like a rubber band because there is never a moment when she's not moving. Her favorite thing about her daughter Juju is that she's always 100% herself. She is completely authentic, and Grace hopes it never changes.
Julia's personality and energy level suddenly came to a halt. She was weak and tired. She didn't want to walk anymore and slept a whole lot. It seemed like she could never catch her breath. She was always taking deep breaths which I attributed to anxiety. Her appetite was basically non-existent which was very odd because she loves to eat. She complained about pain anytime you would touch her. It seemed like all of a sudden she was just not herself.
Then came the nosebleeds that would not stop. The Siegfried family went to the ER and they said it was fine and they believed them even though deep down Grace felt something was wrong. Then she gradually became as pale as a ghost and all she wanted to do was sleep. She was complaining of ear pain, so Grace thought maybe she just had an ear infection. Juju never really got sick before so seeing her sick with anything was something very new for her Mother to see. Grace called the pediatrician again and for the last time, they told her to take Juju to urgent care (with disappointment as her Pediatrician did not see her once all the times Grace called with concerns, they pushed her off to Urgent Care once again). At this point as Grace rushed her to urgent care she had to be carried and she still thought she just had a bad ear infection. Juju’s heart was beating so fast that her mother could feel it through her winter jacket. Within minutes of being at Urgent Care, they told her to take Juju directly to CHOP (Children’s Hospital of Philadelphia) immediately. As you can imagine, Grace was hysterical on the drive up there. She didn't know what was wrong, but she knew in her heart that something was drastically wrong. Once in the CHOP ER, she explained all of the symptoms leading up to that moment. Within minutes of being there, the room was filled with doctors and nurses. The doctor brought Grace into the hallway and said, “We’re all really scared for Julia we think it is leukemia.” Grace explained that hearing those words would haunt her forever. Her body went limp and it felt like all air in her body escaped. Within the hour she was officially diagnosed with leukemia and the Siegfried family's lives had changed forever.
Fast forward to present day, Julia's Treatment Plan over the course of the next 2 and 1/2 years consists of receiving multiple rounds of different chemotherapies. The first 10 months is the intense front-line treatment before she moves into the maintenance phase. During front-line treatment, she will get a lot of lumbar punctures (where they inject chemotherapy into her spinal column.) She will have to forgo a combination of infusion, injection, and oral chemotherapies plus 1 1/2 months of steroids. This also includes 2 months (28-day course each) of an immunization drug (Blinatumomab). Blina is a 24-hour 28-day infusion. Her port will be accessed for the full 28-day dose while she wears a backpack with the drug being infusion through her central line 24 hours a day.
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Finally, after everything that this brave, beautiful, and courageous girl has to battle with in the next few years, she will start "Maintenance" which will last 1.5 years and will consist of daily oral chemotherapy, monthly infusion chemotherapy, and periodic lumbar punctures.
Julia's amazing Mother explained to us in her own words that "It has been a struggle adjusting to this new life to say the least. Some days I wake up and hope this is all a dream. If only that were true. A cancer diagnosis for your child is just horrible and I honestly thought I would never feel happy again. ​ Juju started feeling like herself a few months into treatment. The first 2 months were really hard. It was all very new and she just wasn’t herself again. She was on high doses of steroids that affected her mood and created pain/weakness in her hips and legs. All these side effects carried over into the next month. Juju developed neuropathy in her feet from extended steroid use and from one of her chemotherapies. She began physical therapy early on to help prevent permanent damage. She also needs to wear legs braces now to help give her strength and prevent falls. She has worked very hard in Physical therapy but her the last 6 months and has met all her short term goals like being able to get up from the ground with minimal support, walking up and down stairs on her own and even being able to lift her toes on her own. Even though she has made substantial progress she still has some long term goals to continue working on." She explained to us that "During this time we have had a hard time getting Julia to eat and she was losing weight quickly so now she gets formula feeds through her NG tube and we finally got her to her pre diagnosis weight! Julia had a severe allergic reaction to one of her chemotherapies a few months ago. We knew there was a possibility that an allergic reaction could occur with this medication so she was pretreated prior and monitored once we stated the infusion. Within 30 seconds of stating the infusion Julia went into anaphylactic shock and had to be given an epi pen. It all happened very fast and was scary and Julia didn’t even cry once. Because she was allergic to that chemotherapy she had to do a series of 6 chemotherapy muscular injections for 2 weeks. They were very painful and had their own side effects which resulted in her not being able to get her last dose. After that we went into a few good months. Julia seemed stronger and juju had so much more energy. She was running again, doing somersault, playing on the floor without the fear of not being able to get up on her own. We even started a little flower stand together. Juju and I make floral bouquets/arrangements together to sell at different pop up locations in hopes of being able to spread awareness of childhood cancer, donate a portion of proceeds to different foundations that mean so much to us now and to help bring joy and hope to others and ourselves. During this time Julia ended up with a central line infection with resulted in a week admission at CHOP. We were very lucky we were able to save her line with antibiotics. If you saw Julia you wouldn’t even had known she had a blood infection. She looked and felt completely fine! Even felt great! I had caught it early with a low grade fever and I’m glad I listened to my gut and brought her in when I did. While admitted Julia’s counts started to drop which we expected at this point in her treatment. With that being said she was still feeling great but needed several blood and platelet transfusions. Julia is enrolled in a clinical trial for an immunization drug called Blinatumomab. She was not randomized to it in the beginning of her treatment so we just continued with Standard of Care. This past week the drug was approved to use in high risk/standard risk cases. Julia meets the criteria to receive this therapy which will extend her frontline treatment by 2 months. She will start this drug on Tuesday, July 23rd and we will now have to adjust to a new norm for the next month or so which is a little scary for me because it’s so sudden but I know it will benefit a more positive outcome. With all this being said Julia has shown such strength and resilience well beyond what anybody let alone any 5 year old should have to. It makes me sad that she is missing out on a lot of her childhood and has to grow up so fast but I know this will make her so much stronger. Julia is a very special person. She makes such an impact on everyone that knows her. She was most certainly put on the earth for a reason! She makes this world a better place every second she’s on it."
