Tuesday March 13

Went to UCLA to see another specialist today. He was very helpful and ran Tia through a number of interesting tests. No further results yet so we are still unsure as to why her counts are low (and not improving) and she is extremely fatigued. She can barely walk 10 feet without having to sit down and catch her breath.

We go back to City of Hope every Monday - Wednesday - Friday for Ablecet infusions. It is a full day but if anyone can drive, please let me know as I will need help next week (this week is covered with her sister Lou in town - she has been really great with Tia).

This week we will also be doing another PET SCAN to get a better idea of the white masses that are in her right and left frontal lobes.

We pass each day trying to get Tia to eat and walk a little and just wait for some answers. Hopefully we will get some answers this week.

Thx, Jess
Please consider the environment before printing.

This e-mail message and any attachments are for the sole use of the intended recipient(s) and may contain confidential information. If you are not an intended recipient, or an intended recipient's authorized agent, you are hereby notified that any dissemination, distribution or copying of this e-mail message or any attachments is strictly prohibited. If you have received this message in error, please notify the sender by reply e-mail and delete this e-mail message and any attachments from your computer system.

Thursday

Nothing new on the test results. Tia continues to have virtually no blood count but they can't figure out what is wrong. So, we decided to bring her home to recuperate for the weekend and then do another lumbar puncture on Monday and run more tests.

After fighting to get her discharged, I got a call that we have a gas leak at our house. Really? I am almost ready for locust and hail soon.

So, Tia is spending another night at the luxurious City of Hope.

We rearranged stuff so she will get her lumbar puncture tomorrow and hopefully be home sometime tomorrow provided the gas leak is resolved.

Keep smiling

Sent from my iPad

Wed Update

The new MRI showed that the mass in Tia's right temporal lobe has not grown since February 24th. It hasn't shrunk much either, but no one believes it is a cancer. As all of the tests (viral, fungal and bacterial) have come back negative, the prevailing thought is that the mass is a virus that just hasn't showed up on a test yet.

Tomorrow we will have another MRI of Tia's optic area to try to figure out what is causing Tia's virtual blindness in her right eye. Again, her sight is not getting worse, it just isn't getting a lot better.

Needless to say, Tia is antsy to get out of the hospital. Provided nothing shows up unexpected on tomorrow's MRI, Tia will come home either late tomorrow or Friday. Her counts are still very low so she will need to go back to the hospital every other day for blood work and maybe transfusions. But she will be up for visitors, provided you are healthy!

To blow off some steam, Rae, Ede, Ava and I (and Dylan) went to the gun range tonight. Yes, I did shoot the best.

Let's hope for some good news tomorrow!
Please consider the environment before printing.

This e-mail message and any attachments are for the sole use of the intended recipient(s) and may contain confidential information. If you are not an intended recipient, or an intended recipient's authorized agent, you are hereby notified that any dissemination, distribution or copying of this e-mail message or any attachments is strictly prohibited. If you have received this message in error, please notify the sender by reply e-mail and delete this e-mail message and any attachments from your computer system.

Sunday update

All the tests have come back negative. So we still don't have any idea what is going on. The neurosurgeon is coming tomorrow so maybe he will have some answers.

Her blood work continues to be very low but at least her liver tests are returning to normal.

Tia is being a trooper but it is unbeliveably boring for her. So if anyone can visit during the day this week with new/exciting stories (or movies to watch with her) that would be great.

Rae and I had a great visit with Zoe in Boston on Friday and with my mom and dad in Florida on Saturday. We are on our way back to LA so will visit with Tia tomorrow.

Will keep the blog updated with any news.

Thanks

Please consider the environment before printing.

This e-mail message and any attachments are for the sole use of the intended recipient(s) and may contain confidential information. If you are not an intended recipient, or an intended recipient's authorized agent, you are hereby notified that any dissemination, distribution or copying of this e-mail message or any attachments is strictly prohibited. If you have received this message in error, please notify the sender by reply e-mail and delete this e-mail message and any attachments from your computer system.

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
Sent from my iPad

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

Sent from my iPad

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!

Sent from my iPad

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

Sent from my iPad

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
Please consider the environment before printing.

This e-mail message and any attachments are for the sole use of the intended recipient(s) and may contain confidential information. If you are not an intended recipient, or an intended recipient's authorized agent, you are hereby notified that any dissemination, distribution or copying of this e-mail message or any attachments is strictly prohibited. If you have received this message in error, please notify the sender by reply e-mail and delete this e-mail message and any attachments from your computer system.

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
Please consider the environment before printing.

This e-mail message and any attachments are for the sole use of the intended recipient(s) and may contain confidential information. If you are not an intended recipient, or an intended recipient's authorized agent, you are hereby notified that any dissemination, distribution or copying of this e-mail message or any attachments is strictly prohibited. If you have received this message in error, please notify the sender by reply e-mail and delete this e-mail message and any attachments from your computer system.

Thursday January 26

Met with Dr. Forman today and got the game plan.

Tia will be home and getting stronger until mid February when she will get an MRI and a full body Petscan. She will only have to go back to the hospital every Thursday until then, so if you are available to drive, please let us know.

We fully expect the results to show no visible cancer remains in Tia. Nevertheless, the protocol is to go through an auto stem cell transplant - and this is consistent with our current thinking. The harvesting will most likely begin in late February with the chemo and stem cell transplant taking up the month of March.

As we don't expect much to report until we get the results of the scans, this will hopefully be the last blog for a few weeks. No posts equals nothing new to report.

Have a few great weeks and GO GIANTS!

Sent from my iPad

Monday the 23rd

Tia is home and getting back to her routine. We are all very thankful.

We got the written results of the MRI from January 6th. They show that there are no new lesions or edemas (yeah!). They also show that the old lesions are roughly the same size (6x3 vs 5x4). While we wanted them all to be gone, we must remember that this MRI was taken on day 10 of the radiation.

Radiation is a cumulative process and therefore the last 10 days (and even beyond) have more effect than the first 10 days. We get another MRI next week and are hopeful of a completely clean slate!

We see Dr Forman on Thursday and we will post anything we hear after.

As always, thanks
Please consider the environment before printing.

This e-mail message and any attachments are for the sole use of the intended recipient(s) and may contain confidential information. If you are not an intended recipient, or an intended recipient's authorized agent, you are hereby notified that any dissemination, distribution or copying of this e-mail message or any attachments is strictly prohibited. If you have received this message in error, please notify the sender by reply e-mail and delete this e-mail message and any attachments from your computer system.

Tia is home

What more needs to be said

Will post more later

Please consider the environment before printing.

This e-mail message and any attachments are for the sole use of the intended recipient(s) and may contain confidential information. If you are not an intended recipient, or an intended recipient's authorized agent, you are hereby notified that any dissemination, distribution or copying of this e-mail message or any attachments is strictly prohibited. If you have received this message in error, please notify the sender by reply e-mail and delete this e-mail message and any attachments from your computer system.

Monday the 16th

Tia is feeling better. The combination of compazine and reglan appear to have helped with her queasiness and her pain is also moderated.

She is up and about and has even been eating a little.

All in all a good weekend. She has had the help of her friend Denise who came in from the east coast and her brother, JC. Thanks to both of them for being there!

Today starts the last week of radiation, so let's all hope it goes well.

Thanks again for all your support.
Sent from my iPad

Friday the 13th

Not much has changed. Tia's pain fluctuates through the day from barely tolerable to horrendous. They have put her back on a morphine drip (as opposed to oral) to supply a constant dosage throughout the day. Hopefully this helps.

Today is day 15 of radiation. Five more to go and then we get the MRI to see how effective it has been.

Ede, Zoe and I are off to Florida for 2 days to celebrate my Father's 83rd birthday.

Tia's friend, Denise, and her brother JC will be with her this weekend. She is blessed to have the support of her family and friends. It means a lot to her -- thanks from all of us!

Sent from my iPad

Wed January 11

It has been a miserable 48 hours as they cannot seem to moderate Tia's pain level. She is on a lot of morphine and sleeps a good part of each day but even that is restless and uneven.

I wish there was better news to report but at this point we still do radiation each morning and then try to make it through the day with as little discomfort as possible.

Although she is often asleep, she does like to see friendly faces when she wakes up so if you are in the area and want to stop by, please let me know.

Say a prayer

Thx, Jess
Please consider the environment before printing.

This e-mail message and any attachments are for the sole use of the intended recipient(s) and may contain confidential information. If you are not an intended recipient, or an intended recipient's authorized agent, you are hereby notified that any dissemination, distribution or copying of this e-mail message or any attachments is strictly prohibited. If you have received this message in error, please notify the sender by reply e-mail and delete this e-mail message and any attachments from your computer system.

Monday the 9th

Another set back-- Tia has shingles.  For those who don't know what shingles is, it is a very painful virus. After you get chickenpox (which Tia has had), the virus remains inactive in certain nerves in the body. Shingles occurs after the virus becomes active again in these nerves years later. In her case the reason for the virus becoming active again is that her immune system is weakened.

 

The pain associated with her shingles is concentrated mostly on the left side of her back and that is where the shingles rash is located.Unfortunately, at times this pain is excruciating.

 

The normal course for treating shingles is acyclovir.  She was taking that orally for the yeast infection in her blood stream but in a moderate dose.  They have now increased the dose and made it in IV form.  In addition, they put her on neurontin which helps control pain associated with nerve diseases.

 

This course will continue until the pain is gone.  Most likely she will remain in the hospital all week and be home by the weekend.

 

Will keep you posted

 

thanks

Sunday

Some good news. Tia's pain is way down and the Giants won.

They think she has shingles (which would explain the terrible pain). They added a new med (neurontin) which seems to be working.

She will still be in the hospital tomorrow but hopefully will be coming home sometime early in the week.

Will keep you posted.

Thx, Jess
Please consider the environment before printing.

This e-mail message and any attachments are for the sole use of the intended recipient(s) and may contain confidential information. If you are not an intended recipient, or an intended recipient's authorized agent, you are hereby notified that any dissemination, distribution or copying of this e-mail message or any attachments is strictly prohibited. If you have received this message in error, please notify the sender by reply e-mail and delete this e-mail message and any attachments from your computer system.

Saturday night

A very rough 24 hours as there seemed to be no way to get ahead of her pain. They tried some new pain meds yesterday and this morning, but nothing seemed to work.

Finally about 5pm tonight a combination of morphine, ativan and benadryl got her to a restful sleep.

The good news is that the MRI showed no new growths and no edema and the xray of her abdomen (where all the pain is) showed nothing alarming. This leaves the doctors stumped as to the cause of all the pain.

All we can do is treat the pain one day at a time and hope we find some combination to get her a more permanent relief.

Thanks

Jess and the girls
Sent from my Verizon Wireless BlackBerry

Birthday. January 6th

Not the best birthday. Tia slept most of the day other than being awakened for radiation this morning and an MRI in the afternoon. They are scanning her to see if the radiation caused an edema in her brain. If that happened, then it could explain a lot of Tia's recent symptoms.

We will have the results of the MRI back later tonight and I will update the blog at that time.

I know a lot of you have been calling and texting. Tia just hasn't been up to answering the phone. Hopefully she will be up to it this weekend.

Thanks

Sent from my iPad