Thursday, December 29, 2011

Stop the presses - more good news!!

Tia is home!!

She will be getting the infusions at home (yes I will be learning how to hook up the IV's - so catch me when I fall down)

So this means no long days at City of Hope - just radiation Monday through Friday. We are back to driving in around 8am (for 9 am labs followed by 10 am radiation) and home by noon. Therefore, she will need only 1 driver a day. If you are available and would like to drive between January 3rd and January 20th, let me know.

As always thanks (we have lots to be thankful for tonight) and have a happy new year!

Jess and the girls
Sent from my Verizon Wireless BlackBerry

Thursday the 29th

Tia is coming home tonight!! Her counts are strong enough for her to be released but she still is positive for the fungal infection in her lungs and the yeast infection in her bloodstream.

Therefore, she will need to go back to the hospital everyday for at least the next month to get radiation and anti-fungals (including the dreaded ablecet)but she will be able to be home everynight. The best part for her will be no nurses waking her up all night to check for vitals and no IVs at night!!

Her days (beginning tomorrow) will roughly be as follows. Leave the Palisades between 7:45 and 8 to arrive at City of Hope around 9 (a little later on the weekends as less traffic). She then has labs and pre-radiation meds (valium). She has radiation from 10 to 10:30 and then at 10:30 goes back to the clinic for her daily infusions. At that point she will sleep for a while (double dose of benadryl does the trick) and she does not need companionship.

If you can drive Tia on this morning shift any day between now and January 20th, please let me know.

Between 4:30 and 5:30 she will be done with her infusions and will need to come back to the Palisades. To be safe, anyone who drives the afternoon shift should be at the hospital by 4:30. Once we do this for a while we will fine tune the exact time. Luckily for me, Santa Anita is open and only 5 miles from the hospital so ...

If you can drive the afternoon shift, please let me know.

And for those who have friends in Pasadena (or want to go to Santa Anita for a few hours)... and want to do a full day, let me know that as well.

I know it is the holiday weekend but if anyone who can drive Tia can get back to me, it would be helpful as I try to arrange transportation to make sure Tia gets to the hospital.

The girls and I wish everyone a healthy new year and thank you for all your thoughts and prayers.

Love to all

Jess and the girls


Sent from my Verizon Wireless BlackBerry

Sunday, December 25, 2011

XMas

Girls are at Laker game

Tia and I are going to watch from lovely Duarte.

Tia is done with 2 days of radiation and continues with day 3 on Tuesday. It has been going better than expected. Less than 20 minutes inside the mask the first two days. Let's hope it continues.

Her fungal and yeast infections appear under control but not disappearing yet. The fungal infection could last many more months. The yeast cultures have been negative the last 6 days. She needs to stay on ablecet till the 3rd. This medicine has some very harsh side effects so can only be administered in the hospital. Hopefully we can bring her home next week and then just come back to the hospital everyday for radiation and ablecet. Will know more on Tuesday.

We wish everyone a glorious holiday season and a HEALTHY new year!

Love to all

Jess

Sent from my iPad

Thursday, December 22, 2011

Thurs the 22nd (Radiation Day 1)

Tia started radiation today. She is so brave. She overcame her fears regarding the mask and realized she needs to get through this to get better and was heroic! We are sooooooo proud of her.

In addition, her blood work came back and her yeast tests came back negative for the 2nd straight day. This is good news in not only is the yeast infection not present in Tia's bloodstream, but Tia can have the PICC line reinserted and all the IV lines removed. The IV lines were really painful this time so having them replaced is a huge relief for Tia.

The radiation plan is to have radiation Mon-Fri until January 20th. She will get 180 rads a day for the 20 day period. The goal of lower doses over longer periods is to reduce the side effects (unfortunately, every treatment has side effects). Lymphomas react well to radiation so the lower doses should do the trick.

Hopefully Tia will be home starting next week so it is time again to let me know if you can drive Tia to City of Hope for radiation. Her appointments will be between 10 and 11 so plan on leaving the Pacific Palisades between 8:30 and 9 and returned between 12 and 12:30. Let me know your availability (jessravich@gmail.com) and I will coordinated a schedule.

Thanks for your thoughts and prayers.

Jess 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.

Monday, December 19, 2011

Monday the 19th

Tia is soooo strong but can't seem to catch a break. Her blood cultures came back positive for yeast today. This means that her PICC lines must be removed and she will need to be on regular IV lines while they determine exactly which yeast it is and cure it. She will start taking ablecet again which has its own side effects.

It also means that they cannot harvest her blood at this time. So we are switching everything around and may start radiation this week or next and then look to harvest her stem cells.

Over the weekend she told me and the doctors that "there is something else wrong inside of me other than the fungus". Unfortunately, she was right. It is amazing how in tune with her body she is. This will be a good thing at some point as she will know when she is getting better before the tests prove it!

The key now is to get her healthy enough to leave the hospital. It seems that the longer she stays there the more she is exposed to bacteria, fungus and now yeast. Please keep her in your thoughts as we approach the holidays as there would be no better gift that having Tia come home.

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, December 18, 2011

Sunday night

It was a tough weekend for Tia.

She ran a fever for most of the weekend and was nauseous most of the time. Today she finally got some rest - in fact she slept most of the day.

Not much more to report until we see Dr Forman tomorrow.


Sent from my iPad

Thursday, December 15, 2011

Thursday Dec 15th

A mixed day - but mostly up.

The MRI showed that the tumor shrunk from 11 x 8 to 5 x 4. That is very good news.

During the night, Tia's left lung partially collapsed and was extremely painful. By this evening the pain was down significantly and she was strong enough to go for a walk.

Her white counts which were at zero on Tuesday increased to 400 on Wednesday and 800 today. This is excellent news as it will help her fight both the fungal infection in her lungs and the C-DIF.

We are still hoping to have her home by X-Mas but no Laker game for her!

Thanks

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.

Tuesday, December 13, 2011

Tuesday the 13th

A good day (finally)! The MRI showed the tumor in her brain is shrinking (we don't know how much yet) and no new tumors are growing. This is great great news.

Also, Tia had the CT-guided biopsy of her lung and made it through with only minor complications. She has a small air leak in her left lung and they are watching her in recovery at the moment. They do not think this will be an issue.

We will not know the results of the biopsy for 24-48 hours.

I watched the procedure and was mostly watching Tia's face and her blood pressure (no, it wasn't that I was afraid of fainting if I watched the biopsy and I will explain the procedure in detail later). She didn't appear to be in any pain throughout (that is why I was watching her face) and her blood pressure dropped at one point but was fine at the end.

She is resting in recovery and we go on to fight again tomorrow. She still doesn't want visitors but that (hopefully) will change soon.

Thanks for everyone's thoughts

Jess 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.

Monday, December 12, 2011

Monday the 12th

They found 3 nodules in Tia's lungs over the weekend and they think she has a fungal infection by the way they presented on the scan and by the pain they are causing Tia. To be sure (and to determine what type of fungal infection it is), they are planning to do a CT guided biopsy tomorrow. Tia must be awake during that procedure and will only be under a local.

They also found an infection in her abdomen (CDIF) which is being treated with a broad spectrum anti-biotic. What this means is that everything (harvesting, going home, radiation) must be put on hold while we deal with these issues. So for now, it looks like we will be spending the holidays at City of Hope.

Tia is holding up as well as she can, but the lung infection is extremely painful. Everytime she breathes it causes her pain. She is trying to find a comfortable position, but it is difficult. Right now she is sitting upright in a chair and is resting.

Tomorrow is the biopsy and the MRI.

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, December 10, 2011

Saturday the 10th

A very rough day. Tia's fever spiked up to 102 and she was in a lot of pain most of the day. We upped her morphine drip (from .5/hr to 1.5/hr) but we couldn't seem to get ahead of the pain, which has localized itself in her stomach.

She had a CT scan run to try to get to the cause of the pain. Based in part om the results of the scan, they are changing her meds tonight and we will have an idea tomorrow whether they can get ahead of this infection.

She is about to get some benadryl so hopefully she will get a good night sleep.

If you want to visit during the week, please 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.

Friday, December 9, 2011

Friday Update

Tia seems to be slightly better. A little less in pain but her counts refuse to come up. They may not come up for another week so we need to be patient.

Ava, Tia and I are watching Happy Feet 2. So funny. Thanks to our unnamed benefactor (you know who you are--thanks soooo much).
Tia had a bunch of tests, ultrasounds, xrays... run in the last 2 days and so far so good. The big day will be next Tuesday when we have another MRI. Keep your fingers crossed.

Tia is strong enough for visitors so please email me (jessravich@gmail.com) if you can come and visit. Just let me know some days/times that work. I would love to schedule a visitor for each morning (930 to 1130) and each afternoon (2 to 4) for the next 10 days.

As always, thanks

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, December 8, 2011

Thursday the 8th

Tia is still in a lot of pain.  We upped the morphine and benadryl so she has been sleeping a lot more - which is good as we just need to get through these days and let her white blood counts rise. Unfortunately, the WBC count is still negligible.
 
She has a slight fever and an elevated heart rate. So they did and EKG to be sure all was ok - it is.
 
Also her liver enzymes were elevated based on the last blood draws, so she is about to go have an ultrasound to make sure everything is OK. I will update the blog when we hear the results.
 
The goal is still to get her WBC up so she can harvest her stem cells next week so she can be home before the holidays.  Keep you fingers crossed!
 
thanks
 
 

Wednesday, December 7, 2011

Dec 7 update

Another horrendous night and day. She is in a lot of pain and her counts are still at zero. She is on a morphine drip and all we can hope is that she can sleep for most of the day and get through these stretches of time with as little discomfort as possible.

Will keep everyone posted on a daily basis till she is on the mend.

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, December 6, 2011

Tuesday the 6th

Happy Birthday Zoe!

Tia had a really rough 24 hours. Her counts are basically at zero and therefore she is not only prone to infection but also in a lot of pain. She is on a morphine drip but she is still having a tough time. She is a fighter and she knows we are all thinking of her.

Given her counts and the rawness of her mouth/throat, she is now being fed completely through her PICC lines.

Hopefully her counts start moving up soon

I am heading out to the Hospital later today and will post an update if appropriate.

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.

Friday, December 2, 2011

Friday Update

Good news - Tia is feeling better, her fever has broke and therefore (from a fever point of view) she would be able to come home on Monday. She may not be coming home, however, if her counts drop as we won't want to take the risk of an infection. If that is the case, she may just stay at City of Hope through Christmas.

Here is what is currently the schedule for Dec/Jan/Feb (yeah, another 3 months).

December - She immediately starts to get Nupagen (to force the stem cells out of the bone marrow and into the blood stream) and some scans and bone marrow tests to insure that she is cancer free (other than in her brain). That WILL come back clean!

After it comes back clean she would have a Hickman put in so they can harvest her stem cells. For those who want the #s, her white blood count should be above 10,000 and her CD34 count needs to be at least 10,000,000 (meaning there are 10,000,000 stem cells floating around her bloodstream). Once she reaches these #'s (think right before Christmas), they will harvest 2,000,000 stem cells. This could take anywhere from 1 to 3 days. Hopefully she is home by Christmas for a week of recouperation.

January. The month of radiation. Most likely everyday for 4 weeks. This will be out patient so she will be driving back and forth to Duarte everyday.

February. A month or so in the hospital as she gets roughly 10 days of some new chemos (will tell you more when we know exactly) and then it is DAY 0 - the reinsertion of her stem cells! She will then need 2 - 3 weeks to make sure the transplant took and if everything works out she will be home by the end of February. Just in time for the NCAA as she is a big fan.

Have a great weekend everyone

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, December 1, 2011

Thursday Dec 1st

Tia remains in the hospital as she is fighting an infection and fever. Although she has completed this round of chemo she will not be released for a while longer (until they get the infection under control).

She has remained positive and her new ability to meditate has really helped. At this time, she is not up for visitors but hopefully will be by the weekend.

Will keep you posted

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.