Josie’s parenting journey of a 6-year-old kid with a critical illness

(Note: The picture above is not Josie’s kid)

When I first met Josie (not her real name), it was during a lupus support group forum. The topic for the forum was about Lupus Nephritis medications. A young lady raised her hand, and spoke of her 6-year-old daughter’s conditions. The girl has been diagnosed with lupus nephritis class IV, and is currently undergoing chemotherapy. The doctor mentioned that in the past it is a fatal disease. But now generally people could live with it up to 20 – 30 years.

“Do you mean she can only live up to 30s as she’s 6 now?” She sobbed.

That was almost eight months ago. That was the first time I met Josie.

These eight months made her much tougher, as I sat down and interviewed her. She is no longer the sobbing young mother who is helpless and needed another elderly lady to hold her down. I did not request for an interview until I was absolutely sure that she is comfortable re-living the agony when her younger daughter was diagnosed with Lupus Nephritis Class IV, an autoimmune disease triggered by the immune system’s attacks on the kidney.

It all started when Josie noticed that her daughter’s urine was cloudy. She brought her daughter, Meng (not her real name) to several pediatrics for numerous tests and diagnoses. Her protein and creatinine levels were unusually high, indicating that the kidney function was impaired. The readings deteriorated rapidly and became critical over a five-day period. Meng was diagnosed with Lupus Nephritis Class IV. Without immediate suppression, the immune system’s attacks on the kidney could cause severe, permanent damage to the kidney, warranting dialysis or even a kidney transplant.

Josie recalled the heart-breaking moments when she held Meng in her arms during the blood taking session. As her hands are tiny, the blood veins were not apparent, the hospital staff did not manage to draw blood after pricking one spot. They had to try different spots a few times. Meng was quiet throughout the session, not shedding a tear or even letting out a cry. Josie was the one shedding silent tears when she saw that Meng had to endure the pricks several times. She wished that she was the one taking the jabs instead of Meng.

How did she cope?

When Meng was first diagnosed with the critical illness, Josie cried almost everyday, feeling powerless and agonizing over Meng’s future. In spite of the tears, she did not despair. She did extensive research on lupus nephritis, joined various lupus groups on social medias, searched for lupus support for kids and contacted other patients where their lupus were diagnosed at child age. People around Josie recommended that she provide Meng with an endless list of supplements, medicines, and different doctors but she knew that she had to follow the nephrologist’s advice. She continued to search for alternatives that could help Meng. She armed herself with more knowledge so that she could give Meng the best chance to live life the fullest despite having lupus.

Meng had to go through six chemotherapy sessions to suppress her immune system. The session takes place every fortnight, and each session last for one whole day. When the sessions ended, Meng’s protein and creatinine readings have improved. However when she was discharged, she was in a temporary state of withdrawal. She was not as lively as she used to be. She spoke less to the parents, and did not want to go out to play in the playground. Neither did she cry or throw tantrums. She was just extremely withdrawn and cool. Josie was very worried, so she tried to play and spend time with Meng in-doors instead. Josie’s efforts paid off, and Meng’s condition has improved over time. She has gradually reverted back to her liveliness before the disease.

Sometimes the challenge came from within the family. Her 9-year-old elder daughter felt that ever since Meng was sick, her parents shifted all attention to her younger sister. It was not easy to explain Meng’s sickness to the elder daughter without sounding morbid. Meng did not look sick to the elder sister, and she did not understand why the parents could not have spent the same amount of time with her. She felt some level of unjust because she felt that she did not cause her sister to become sick.

It was a stressful situation but Josie decided that she would take things one thing at a time. She was considering other methods that she might be able to spend more time with both kids, and potentially an alternative career path. As a full-time career woman, she had to take family care leave to take her daughter to the doctors when needs arise.

Now Meng’s protein and creatinine readings have resumed to normal. Josie is still concern of Meng’s state of health from time to time, but she is now better equipped, and mentally tougher. She wishes luck and gives a pat on the shoulder to all parents fighting the war for and with their chronically-ill children alike.

May hope be with us, always.

Author: Li

This is a blog about the journey with my friend - Lupus, 500 days and counting after I was diagnosed. After I passed the initial stage of acceptance and moving on, it has been well so far. Whilst I have a full time job, I am also a writer for hire and could write just about anything. Contact me if you see anything that you like! View all posts by Li