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, loved to play, sing, dance, jump and run. She is incredibly social. She has been this way since she was baby. We never knew what she was saying but she always had ALOT to say. Girl will have a whole restaurant saying bye to her by name when leaving.

She truly knows how to make people feel special and loved even if she just met you at target. We recently started saying her super power 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. I always joke and say she a like a rubber band because there is never a moment she’s not moving. My favorite thing about Juju is that she is always 100% her! She is completely authentic and I hope that never changes.

JUJU’S STORY PART II

Juju’s personality and energy level suddenly came to a halt. She was weak and tired all the time. She didn’t want to walk anymore and slept a 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 the sudden she was just not herself.

Then came the nose bleeds that wouldn’t stop. We went to the ER and they said it was fine and I believed them even though deep down I felt something was wrong.

Then she gradually became as pale as ghost and all she wanted to do was sleep. She was complaining of ear pain so I thought maybe she was just sick with an ear infection. Juju never really got sick so seeing her sick with anything was something new for me.

She then wasn’t able to stand on her own, she had absolutely no balance and kept falling.

I called her pediatrician again, and for the last time they told me to take her to urgent care. (Her pediatrician did not see her once all the times I called with concerns. Every single time I called they pushed us off to urgent. What an absolute disgrace!)

I rushed her to urgent care at this point she had to be carried. I still thought it was a bad ear infection. Juju’s heart was beating so fast I could feel it through her winter jacket.

Within minutes of being at urgent care they told me to take her to CHOP immediately.

I was hysterical on the drive there. I didn’t know what was wrong but I knew in my heart that something was really wrong.

When we got to CHOP ER they took us back right away. I explained to them all of the symptoms leading up to that moment. I didn’t think that they were all connected but they were and I will always feel guilty for not realizing sooner.

Within minutes of being in the ER, the room was filling with doctors and nurses. I was terrified.

The doctor brought me in the hallway and said “We’re all really scared for Julia. We think it’s Leukemia”

Hearing those words will haunt me forever. My body went limp and felt like all the air escaped my body. How can you say that? You don’t even know?!” But they knew…and I knew it too.

Within the hour she was officially diagnosed with Leukemia and our lives changed forever.

JUJU’S STORY Part III

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.

During this time we have had a hard time getting Julia to eat and she was losing weight quickly so she needed to get formula feeds through her NG tube and she finally got back up 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.

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 had so much more energy. She was running again, doing somersaults, 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 witch 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 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.