I have started this blog for my niece, Marlee, who is in the hospital with (as of now) an unknown Neurological disorder/disease. She has been battling with this unknown “Monster” for the last month and has had 2 admissions so far. It is difficult and frustrating to sit back, wait, and watch what my brother-in-law’s family has to go through. I hope that through this blog and networking, Marlee’s story can get out, help offered, answers revealed, and at the very least, prayers said. My brother-in-law and sister-in-law have not been able to work for the last month because they have been caring for Marlee. Hospital bills, medical expenses, and other bills have been accumulating. I hope that this can provide some amazing support for them and ease their minds somewhat to help with the emotional and financial challenges that they will be facing in the months ahead. Here is Marlee’s story about the “Monster” inside her...

Marlee is 3 years old. She has 3 older sisters, Kayla (18 years old), Isabella (11 years old), and Jayden (6 years old). Prior to her inital hospitalization, Marlee was extremely active, very talkative, energetic, danced Tahitian, and was just like any other kid.

This was written by my sister-in-law (Marlee’s mother) about 2 weeks ago (and about 1 week after being discharged from her initial hospital admission):

"My daughter Marlee is 3 years old, 4 in June. We first noticed signs that something wasnt right about a month ago. Marlee started to limp on one side. It was like something was dislocated but she didnt complain about it. we noticed that she would fall out of nowhere. She would be walking and just fall. I told my husband that there was someting not right.

About a week later we noticed that she would repeat words in a sentence like she would get stuck. She would say "I want.. I want.. I want.." she would repeat it over and over again. Eventually she would get frustrated and give up or cry. She would have these "tantrums" crying and yelling for no reason. We also noticed that she wasnt sleeping well. She would have these leg movements at night that would keep her awake. We noticed that when we would talk to her she would zone out. After putting it all together we realized that something was wrong and this might all be related.

We had already scheduled an appointment for her leg to be checked out at Kaiser in the Minor Injury Clinic. We didnt want to wait a week for her doctor to see her. They did an Xray of her left leg. They didnt notice anything abnormal, and sent us on our way.

We were able to get an appointment the next week with her peditrician. We have never had Kaiser before so this was the first time seeing this pediarician. We explained to her Marlee's symptoms and she immediately sent us to the emergency room for a CT scan. She advised us if the CT scan came back normal that we would be admitted into the hospital for further testing, which we were. That night Marlee didnt sleep. She tossed and turned all night and had a tantrum that we couldnt control.

The following day, we were transferred to PICU at Santa Clara Kaiser. There they ordered an MRI and an LP. Marlee's tantrums seemed to grow more intense and lasted a lot longer. We were convinced that it was lack of sleep and she hadnt eaten at all. The night of the MRI I noticed Marlee was hallucinating. She would look up into the ceiling and laugh and point and say strange things like, "he looks like you mama, hims dead?" That was up until that point one of the scariest moments. I thought for sure she was possessed by the devil and was seeing dead people.

We had daily 10 minute visits from the doctors. They would ask how she did the previous night and take her vitals. It was frustrating to say the least. We were stuck in a room with our daughter who was slipping away, mentally and the doctors would only give us 10 minutes a day face time. The fourth day at in the PICU was the last day she communicated with us. We were talking about her favorite movie, Toy Story. We could tell that she was losing the ability to talk, so we were trying to encourage her at any chance we could. We asked her, Who's this? She responded the first two times "Buzz" and "Jessie" when we asked her who Woody was she had a total melt down. She began pointing at Woody over and over again and started to cry. The pointing turning into hitting the page and she lost it.

The nurses came in and said that its completely normal for her to act this way. The next day we were moved out of PICU and into pediatrics. The doctors advised us that all the tests they have done on Marlee were coming back normal, but just to be safe they wanted to give her a dose of IVIG. They sent away for the NMDA test and wouldnt have the results back for at least two weeks, but if she does have it the IVIG would help.... they hope! WHAT?? Marlee's tantrums began to get worse. The doctors started giving her Clonazepam. After two days they switched her to Versed to calm her from her tantrums. After another two days of Versed "as needed" the doctors decided to put her on Risperidone every 12 hours and Clonazepam in lieu of the Versed. Marlee's tantrums seemed to calm a little. She wasnt as violent, but she still had at least two episodes a day.

We encouraged Marlee to play as much as possible. She would just stare at us with empty eyes. It was like she was there but not there.... We took her to the playroom on the floor and she would play and walk around. The doctors took this as a sign as she is better. After only two weeks in the hospital she was released with her perscriptions of Risperidone and Clonazepam and a referral to see OT/ST/PT and a follow up with a Neurologist in a month.

Tomorrow will be a week she has been out of the hospital and she doesnt seem to have gotten any better. She cries the WHOLE time she is awake. We havent gotten her to talk at all. She is still having tantrums. We had a follow up with her pediatrician and asked if the results have come back... NOTHING. No answers no suggestions, she just advises us to wait.......”

A few days after this was written, Marlee stopped eating and anything they could get her to eat, she threw up. After 3 days of not being able to hold anything down, she grew more weak and lethargic, was unable to walk, and was brought back to the Emergency Room on Thursday, March 21, 2013.

Frustrated with the lack of answers and the amount of time that went by with still no results from original tests, Christina and Bernard took her to Lucille Packard Children’s Hospital, despite their Kaiser insurance.

After being there for just a day and meeting many doctors and healthcare members on the team that would care for Marlee, a glimpse of hope came about that maybe, just maybe, they would finally get some answers. A repeat lumbar puncture was done since Kaiser still did not have any results ready or back from their LP.

However, being that they had Kaiser insurance, they were classified as a “high risk” patient (private pay). The second day after admission, many people came to talk to them about transferring back to a Kaiser facility. Christina and Bernard were happy and hopeful with the care they were receiving. But when asked for a 60% deposit for their hospital stay several times, they felt like they were being pushed to go back to Kaiser. They were also told that the IVIG treatment they wanted to restart on Marlee would cost them $20,000 for ONE treatment. They estimated that they could be there for 2 weeks with over $200,000 in medical expenses at their hospital. And, in their 2 day stay, already accrued over $50,000 plus doctor fees. Oh, and if they could pay the 60% deposit as soon as possible.... So, reluctantly and sadly, Marlee was arranged to transfer to Kaiser Oakland on Saturday, March 23, 2013.

 

 



Now to make the long story “short”. Marlee has been living with this unknown “Monster” inside of her for nearly over a month. The doctors are still baffled and awaiting results. So far, at Kaiser Oakland, Marlee has started IVIG therapy, had another CT scan, and started a new treatment of Rituximab.

As of now, there are 3 possible diagnoses of what they are thinking Marlee may have: Anti-NMDA Receptor Encephalitis, Neuroblastoma, or Opsoclonus Myoclonus.

• Anti-NMDA Receptor Encephalitis: 

It is a fairly new autoimmune disease where antibodies attack the body and brain and cause the brain to swell that was identified in 2007. Symptoms can include paranoia, mania, being dazed, personality changes, and being catatonic. Diagnosis is made with cerebral spinal fluid (CSF) and treatment may include: iv corticosteroids, IVIG, and immunotherapies. May be attributed to viral reasons or malignancies.

• Neuroblastoma:

Most commonly affects children under 5 years of age. It is a type of cancer that develops from immature nerve cells that may be found in several areas of the body. The abnormal cells grow and accumulate forming tumors. Symptoms may include: abdominal pain, changes in bowel movements, leg swelling, wheezing, chest pain, lumps of tissue under the skin, protruding eyeballs, dark circles around the eyes, back pain, fever, unexplained weight loss, and bone pain. Diagnosis is made through urine & blood tests, and various imaging tests. If a tumor is found, a biopsy is done. Treatment for neuroblastoma is chemotherapy, radiation therapy, immunotherapy, stem cell transplant, and/or surgery.

• Opsoclonus Myoclonus:

Myoclonus occurs most when movement is attempted, worsens with agitation or stimulation, but may be present at rest. The patient may appear tremulous or have jerking of the face, eyelids, limbs, fingers, head and trunk. Patients have trouble speaking, eating, standing, sitting, or sleeping, and exhibit drooling, rage attacks, head tilt, or other abnormalities. Children appear to be nervous, irritable or lethargic. May be caused from viral infections or tumors and occurs because antibodies that are trying to kill the tumors cannot distinguish between that and the brain. So the body basically is attacking the brain also. Treatments include: IVIG, chemotherapy, IV glucocorticosteroids, and Adrenocorticotrophic hormone (ACTH).

　

We are still playing the waiting game. Awaiting results from labs and scans. Meanwhile, the doctors seem to be attempting to use treatments that are used for many of the possible diagnosis. Marlee is being fed through a feeding tube in her nose, is non-verbal, does not swallow, stand, or walk.

As family and friends, we watch helplessly as Marlee seems to have little to no improvement and battles this unknown “Monster“ inside of her. But we pray that are prayers will be soon answered and we’ll have the crazy, energetic, playful, talkative, dancing Marlee back very soon.

Thank you for taking the time to read my niece’s story. We are grateful for prayers and well wishes. 



　

For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11