1 Year Diagnosed with Lupus

On March 8, 2018 we received news that Scarlett had Systemic Lupus Erythematosus. After being told there were no cancer cells in Scarlett’s bone marrow we were anxiously waiting for answers and hoping for the best possible outcome. I will never forget Dr. Syverson and Mauriello walking with us to the staff only area where the doctors’ room was to privately talk about her diagnosis. We agreed to have a kidney biopsy which did confirm she had class 5 lupus nephritis. At this point, Scarlett was still on the oscillator and continued to have a poor chance of survival.

I have had several people ask me if I was angry that she was initially misdiagnosed with JMML. I have to definitely say no. Lupus is known as the great mimicker. I have read other lupus blogs that have said it initially did look like cancer for them as well. Scarlett’s oncologists also said to us that her presentation was not typical for JMML because her spleen was not enlarged, and only her lab results met the criteria. Scarlett did have 5 days of chemotherapy for leukemia which she did seem to respond to as the chemotherapy did suppress her immune system and eventually she had cyclophosphamide chemotherapy to treat her lupus.

Scarlett’s lupus diagnosis changed everything. She was still critical with a very guarded prognosis, but it gave us hope. Lupus could be treated and a plan was put in place to treat her with cyclophosphamide chemotherapy and high dose steroids. Eventually she was also treated with rituximab and did respond to treatment. Scarlett made a recovery that many thought would be impossible. Now we are facing the long term aspects of having a child with lupus.

Scarlett is constantly catching every little bug going around. We are hoping that next year when she’s farther out from her chemo that it won’t be so bad, but she will still need to be on mycophenolate which suppresses her immune system. Getting a definitive answer as to what she was up against was a turning point for us. Pulmonary hemorrhage in lupus is very rare and there are no published case studies in this happening in a child as young as Scarlett.

My hope for Scarlett after receiving her diagnosis is that she’s able to live a long fulfilling life. She is already loved more than words could express. Her story has touched so many people. We have to have faith that Scarlett will make it to adulthood and have normal life experiences. The day she graduates high school, college, etc. there will be no one bawling more in the audience than me. Scarlett is a little lupus warrior. She has now been living one year diagnosed with lupus but I just believe she will continue to amaze us for many more to come.

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