Tuesday

Tia just had a bone marrow biopsy. It went well and she is resting. We will get the results in 48 to 72 hours.

The results we have from the lumbar puncture are all negative so far. Meaning they don't know what is causing the infection. Her blood and platelet counts continue to be extremely low so hopefully the bone marrow biopsy will yield some answers.

Needless to say, Tia will be in the hospital for a while. I am going back east from Thursday to Sunday to see Zoe and celebrate my mother's 83rd birthday. If you can visit Tia while I am gone that would be great. Remember her white blood count is below 500 so if you feel ill at all, please postpone your visit.

Tx

Jess
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Sunday night

We don't have any definitive results. The preliminary results lead us to believe that it is not another lymphoma but we can't be sure. Tia's blood, liver and sodium levels are well below normal so we need to figure out what is going on right away.

Needless to say, Tia will be at the hospital for a while. She is remarkably strong and usually loves visitors, so please let me know if you can stop by. Her sister, Sarah, is visiting and I am going to leave a car out there for her, so if anyone from the Westside is thinking of visiting Monday evening, can I get a ride back?

Semi-funny story. So, after the lumbar puncture on Friday, Tia was cold so we wrapped a hospital blanket around her head. She had also taken a Valium before the procedure and was instructed to lie completely still for 2 hours. On top of that, she had a migraine so her eyes were closed.

So about 45 minutes into the 2 hour period, the neurologist comes in. He looks at her and starts talking to me. I ask questions about his preliminary read of the MRI and he states that it doesn't present as a lymphoma but rather as a viral encephalitis and until the LP results come back, we will treat it as such. He then states that in cases like this, the patient can be in a coma for quite some time. At which point I told him that Tia is not in a coma, just resting as instructed.

He then asks Tia to do some typical neuro exam things like push against his arms, lift her legs against his pressure... When he asked her to squeeze his fingers, I think she was a little pissed about the coma comment as I heard the doc exclaim, " ouch, that's enough". Like I said, she is one strong, tough lady.

Tx

Jess

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Friday Feb 24

Tia just got back from her lumbar puncture. She was a trooper. She has to lie flat on her back for 2 hours while the hole heals. She is very comfortable.

We are now waiting for the results to determine what is causing the new mass in her right temporal lobe. This mass showed up on today's MRI and wasn't there on February 13.

The most likely culprit will be viral encephalitis. All 4 doctors who visited today believe this will be what the ultimate tests show. As a precaution, they will start her on anti viral and anti seizure meds tonight. We won't know for sure, however, what it is for 2-3 days. The other possibilities are bacterial, fungal or lymphoma.

Also she is going to be getting ablecet which is a really nasty treatment for the fungus in her lungs. It may be a long night.

Hopefully things will start to show some improvement over the weekend.

The good news is that her spirits are good and she is loving the orange popsicles!

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Thursday Feb 23rd

Tia is back in the hospital. She went in for a routine check up and her blood counts were very low, she had a fever and her other counts were off. To be safe, they are going to give her a transfusion, some nupagen and antibiotics.

We will obviously know alot more over the next few days.

I am unable to be at the hospital on Saturday so if anyone can visit that would be great. She is in the ETC (the ER at City of Hope) but will hopefully get a room tomorrow.

We will keep the blog updated

Jess and the girls

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Drivers wanted!

Tia has a consult this Friday (17th) at 10am so would need to leave the Palisades at 830 and be back before noon

Also, on thursday the 23rd Tia has a picc changes at 345 followed up by a meeting with Dr Forman at 445. She would need to leave the Palisades at 230 and probably not be back till 630.

If anyone can drive either of these visits, pl let me know

Thx, Jess
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Monday the 13th

Great news!

The MRI and the PET both came back clean. Some scar tissue on the MRI but no lymphoma.

We will be meeting Dr Forman tomorrow and will still be looking at a stem cell transplant but for tonight it is just a celebration.

Will post more tomorrow!

Love to all

Jess Tia and the girls
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