Sunday the 27th

Tia started chemo again late Friday night. The current schedule is to be on the 3 chemos (high Ara-C, low Ara-c and etopaside) for 5 days.

However, she has been running a high fever which may throw a wrinkle into things. She is sleeping now (Sunday at 2pm) and we are waiting for the results of the chest x-ray and blood work. Depending what the results are, the schedule may change.

We will keep you posted.

Thanks

Jess and the girls.
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Mondat November 21st

The counts are up! Tia's platelets are above 150,000 which means that she is strong enough for another round of high Ara-C chemo! She will be going back to City of Hope on Friday after we all celebrate a thanksgiving for which we all have something to be thankful for.

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Thursday, Nov 17

Tia's counts continue to rise. Platelets up to 58,000 from 40,000 (goal is 100,000 to get more chemo). White blood count up to 4,500 - needs to be at 5,000.  Getting closer!

 

HAPPY BIRTHDAY AVA!!!!!!!

 

thanks everyone

 

Jess

Tuesday Update

Here is the game plan.

Tia will be home until Sunday the 27th. While she is weak, she would love to have visitors (as long as you are not feeling ill).

I will be taking the girls (and Bobby) to Costa Rica for thanksgiving week but Tia's relatives and friends from back east are coming out to keep her company.

On Monday the 28th, Tia will begin the next round of treatment. Her counts are still very low and if they don't come up she will be too weak for another round of chemo. If that is the case, she will begin radiation. If she is strong enough, however, then she will do another round of chemo.

She has three indices that need to improve. First, her platelets which are at 40,000 need to be at 100,000 without any more transfusions. Second, her white blood count needs to be over 5,000 without help from the neulasta - it also has a ways to go. Third, what was that third thing... Oops.

She will be going back regularly to city of hope to have blood work performed and I will keep you posted on the results.

Root for high numbers!

Thanks

Jess

Sent from my iPad

Tia is coming home today!!!!

What more needs to be said.

Monday Nov 14th

Tia is up and around and doing great.  The tumor has shrunk from 31x26 to 11x8 - a drastic reduction. This is great news as it means the current chemo regimen of High Ara-C and etoposide is working!

 

She will hopefully be home by Thursday and should be home all Thanksgiving week before she goes back in for round 2, so please come by and visit!

 

Thanks

 

 

 

Sunday Nov 13

Tia's white blood count continues to rise. Yesterday it was at 1,200 and today it is at 2,200!

She is up and around and having friends come and visit.

The short term goal is to have her start eating tomorrow (she has been being feed by TPN for the past week) and have her home by Wednesday so we can all celebrate Ava's 17th birthday on Thursday.

Have a great Sunday

Sent from my iPad

Great news!!!!!!!

The MRI showed that the new tumor is reacting to the high Ara-C chemo and is shrinking.
We only have the preliminary results so I don't have the exact size yet but it is much smaller (that was the technical term used by Steve).

We are still very early on regarding the full schedule but it looks like she will be in the hospital for some or all of next week as her white blood counts move up. She would love to have visitors again starting on Sunday.

She will then be home for 1 to 2 weeks recuperating and having thanksgiving at home. We will then do another round of high Ara-C in December Depending upon how Tia's counts react the second round will probably entail additional hospitalization. Sometime during this second round they will try to harvest her stem cells for a future transplant.

The plan is to do the second round then follow that with 20 days of IMRT (radiation) and then do an auto stem cell transplant.

There are a lot of unknowns but tonight the entire Palermo and Ravich families are just enjoying the news and celebrating! Tia and I have a "rescue me" tv marathon planned while she has a lovely intravenous dinner of TPN and I have PB and J sandwiches. Given the news, it is like we are at a 5 star restaurant.

Thanks for everyone's support and celebrate with us!

Jess, Tia, Zoe, Rae, Ede and Ava

Sent from my iPad

Thursday Nov 10

It was a good day!

Tia started making white blood cells! While her count is lousy (200), the key is that it is above zero and rising. Let's recap. Yesterday her counts were lousy and the DOW was down. Today her counts were up and so was the market. As she gets her blood drawn at 4:45 (before the market opens), this could be the next great market predictor!

Tia made it through 8 rounds of methotrexate without losing her hair, however, after one round of high ara-c she is now bald. Luckily she has a nicely shaped head.

Not a lot else new today. Tomorrow is the MRI and we will let everyone know the results.

Thanks

Sent from my iPad

November 9th

Today was not a good day. Tia's infection increased and she spiked a fever in the late morning. This caused her blood pressure to drop. On top of this, the infection in her stomach is extremely painful.

The doctors responded by using both broad spectrum and specific antibiotics for the infection and by starting a morphine drip for the pain. She responded well and while her blood pressure is still low, her fever is down and the morphine is alleviating the pain.

She is resting comfortably and watching Breaking Bad with her sister, Julie. She has seen 3 seasons so far this hospital stay. No doubt she will finish everything before she gets out, so we will need to come up with a new series for the next hospitalization. Suggestions are welcome. Her favorites from the last stays were Deadwood, The Shield and Damages so shows along those lines would be good.

This is day 15 since her chemo round of High Ara-C and her white blood count is still at zero. It should start moving up soon.  If it doesn't move up by day 21 we will need to figure something else out.

While she was not strong enough to have visitors today, she did have her decorator (thanks Kimba) come by to pick out fabric for curtains. You had to picture this. Tia couldn't have the fabrics in her room due to potential infections so Kimba would hold one up to the window and Tia would give a thumbs up or thumbs down. Amazing!


When I got there, I was hoping she was redecorating her hospital room but it turns out I am getting new curtains somewhere at Alma. It is good to know that somethings never change and she is still Tia.

While we have been fighting the infection battle since last Wednesday, we must not lose sight of the cancer war. Tia goes for her MRI on Friday so we are all very anxious for the results.

We will keep you posted.

Jess, Zoe, Rae, Ede and Ava

November 8th

Tia's counts are still not coming up.  While they usually hit their nadir (decent scrabble word) 14 days after chemo (today), the fact that they are not moving is slightly troubling. Therefore she is starting an IV treatment of immonuglobulin G (IVIG)

 

IVIG is given as a plasma protein replacement therapy for immune deficient patients who have decreased or abolished  antibody production capabilities, i.e., Tia. The IVIG is administered to maintain adequate antibody levels to prevent infections; therefore it confers a passive immunity. The treatment can be given every 3–4 weeks.

 

This is a tricky transfusion as there could be a number of adverse reactions. The most frequent reactions are fever, chills, pruritus (severe itching - an excellent scrabble word), or urticaria (basically hives, but another good scrabble word). These can usually be managed by reducing the dosage and spreading the IV over a longer period of time.

 

We are hopeful that with the IVIG and the passage of time since the last chemo, that Tia's counts will come back up by the weekend and she can come home.  If that is the case, she will have next week "off" and then hopefully begin the second round of chemo the week of the 21st. If you are in town during the thanksgiving week and can visit and/or stay over, please let me know.

 

Thanks and we will keep you posted.

 

Jess, Tia and the girls

November 7th

Monday morning

 

The antibiotics apparantly are working as the new blood tests are not growing any new infections! This means that the old infection is still there but under control as long as she stays on IV antibiotics.  Probably 10 days worth of IV antibiotics. She can do the IV antibiotics either in the hospital or at home - the determining factor will be what her white blood count is. At the moment, her white count remains very low (100) and therefore she must stay in the hospital for a while. Once her count gets up to between 500 and 1000 she can finish the IV regimen at home.

 

At a minimum she will be in the hospital through Wednesday, and most likely through Friday. So, if you want to visit, please let me know.

 

Friday still remains the big day as she gets her MRI to see if this last type of chemo is working to shrink the tumor.  Tia is convinced it is as her hair is falling out. Assuming it is, we will wait about a week after her counts come back and then start the second round of High Ara-C chemo. That would put her in the hospital for the second round during thanksgiving week. Again, planning that far out is prone to numerous changes.

 

Thanks for all the thoughts and prayers

 

Jess, Tia and the girls

November 5th

Hi
Tia just moved out of ICU. Her blood pressure is stable and while she still has a general infection,  the heavy duty antibiotics seem to have it in check.

We will meet with the doctors tomorrow to discuss when she will be strong enough to have the next mri and hopefully start chemo again. For now she is in room 5103 and would love to have visitors starting tomorrow. Remember, do not come if you are at all under the weather. Also, please email me when you would like to come so I can arrange a schedule.

Thanks again

Jess/Tia and the girls

Remember, remember the 5th of November

Saturday morning

Tia's blood pressure is up above 90 and she is off blood pressure meds. She does have an infection (the classification is gram negative) and will need to stay in the hospital for a while. The doctor thought it could be for a week to 10 days but that could change. Also, she may just stay in and go straight to chemo next week if the MRI shows that the tumor is shrinking.

The good news is that while they don't know exactly what the infection is, given that her BP is up and her fever is down, they don't expect it to be a really bad infection. Her white counts remain virtually at zero however, so no infection can be taken for granted.

We certainly wish we could be out of the hospital today to celebrate with our friends the Byer's (wedding), Friedman's (bar mitzvah) and Ressler's (bar mitzvah). We can't wait to see the photos of the happy events!

I am making Tia watch hours and hours of horse racing this weekend as it is breeder's cup. Luckily, she enjoys the ponies.

Tia can only have limited visitors in ICU and all the girls are coming today. Starting tomorrow she can have visitors, so if you want to visit please email me so I can make sure we don't run too far afoul of the hospital rules on visitors. Next week she should be back on the regular floors, so visit away!

As always, thanks

Jess and the girls

November 4th night

Today was a very rough day but Tia is now stable and comfortable in the ICU.  She had been running a fever and had extremely low blood pressure most of the day but with 4 heavy anti-biotics and 2 blood pressure meds they appear to have a handle on the infection.
 
She will be in the ICU for a few days and then the hospital for a few more.
 
Ede will update the blog everyday during this period.
 
Thanks
 
Jess

November 4th

Friday Tia was moved to the ICU today as some complications set in from the after effects of the high doses of chemo she had been taking. To summarize, she has no white blood cells so any infection can be very serious. She spiked a mild fever on wednesday and had a lot of pain in her abdomen.  As we wanted to make sure everything was covered they saw her on Wednesday and started her on flagil and then they admitted her yesterday and gave her a number of different antibiotics. Her blood pressure continued to drop and her fever did not abate. As there is only so much they can do on the regular floors they moved her to the ICU this afternoon so they can administer higher doses of dopamine and other blood pressure meds. The pain has now abated and her blood has recovered somewhat (to 79 over 37 to 85 over 41). She is extremely alert mentally and was just on the phone redecorating some rooms in our house. Unbelievable. The plan is she will remain in the ICU until her blood pressure stays above 90 without the meds. Then she will be moved back to the regular ward. At the moment she cannot have visitors other than family but as that changes I will let you know. Keep her in your prayers. Thanks Jess and the girls PS they just gave her more dopamine and her BP is up to 102. It is more volatile then the market!

November 3rd Update

Hi
 
Tia is going to go back in to the hospital today as her white blood count (specifically her ANC) is extermely low. While not unexpected, due to the high Ara-C regime she was on, we want to make sure that she does not get an infection.  At this point we are still on the same schedule of having scans run next week and then making a decision about next steps.  She is in good spirits and really loved having all her daughters home last night.
 
In other news, Rae is home for the weekend. Also, Ede has created a blog archiving my emails. If you missed an email or want to comment or ask questions, go to tiaupdates.blogspot.com and register.
 
Thanks everyone and once I know how long she will be in, I will let everyone know.
 
Lastly, we want to wish Mike and Meredith a wonderful wedding and we are sorry we can't make it.
 
Jess, TIa and the girls

September 25th

Tia will be going back into the hospital this Wednesday for round 8 as she had to postpone last week due to her having a cold and being unable to recieve chemo.  I will bring her on Wed and hopefully she will be home on Sunday. 

 

She would love to have visitors Thurs- Sat at city of hope (preferably those arriving around meal times with food!) so please let me know if you are able to visit.

 

This is the last treatment in the hospital for this round and after the at-home chemo the first week of October, we go in for lots of scans to see how successful this round was and what the next steps will be. Keep your fingers crossed.

 

For all those who celebrate, have a Happy NewYear and an easy fast and to everyone, thanks for all your wishes and thoughts.

 

thanks

 

Jess & Tia

October 11th

Hi everyone

 

We got the preliminary results back from the MRI and CT Scan and they are not great.  There is a tumor (whether it is new or part of the old tumor is yet undetermined) in the same region of her brain.  It is only 11 mm in length but it is apparently chemo resistant.  The next steps are to begin Intensive Modulated Radiation Treatment (IMRT) as soon as we can.  The current plan is that we are leaving tomorrow to NYC to see Dr Morton Coleman (and Rae, some friends and the Book of Mormon)  and then go up to Rochester to see Dr Richard Fisher and spend a few days on our farm. These gentleman are experts in this field and are colleagues of Dr Forman - our main doctor.  While Tia and I are 100% sure they will agree with the next steps of IMRT, it will be comforting to hear their concurrence.

 

The IMRT should begin next week with planning and mapping and the actual radiation should begin the following week.  It is currently the thought that she will have 3 weeks (Mon- Fri) of radiation followed by another round of MRI and CT scans.  Hopefully the radiation will eradicate the cancer and we can then be back on the track of prophylactic chemo sessions followed by a stem cell transplant.  Obviously, everything is in flux until we get the scans back after the IMRT.

 

Once we start the radiation I will be looking for volunteers to drive Tia back and forth to City of Hope on certain days.  The actual radiation time is minimal each day. If you are available starting the week of the 24th, please let me know.

 

As always, thanks for all the support and thoughts

 

Jess, Tia and the girls

October 31st

Hi

 

Tia is on her way home! 

 

She finished 5 days of high Ara-C, low Ara-C and etopaside late yesterday afternoon.  She handled the drugs remarkably well during her hospitalization, other than being physically fatigued. She also vacillated between being very lucid/sharp and being out-of-it and forgetful. I am trying to figure out in which state she was ordering all this new jewelry - hopefully the latter even though I am afraid it was the former.

 

The fact that she is now sharp mentally leads everyone to believe that any strange behavior she was exhibiting (like changing her voice mail to Birdie from Tia) was due to the fact that she was being affected by the pre-meds and the chemo and that we shouldn't read more in to it than that.

 

The chemo she is now taking will continue to work for the next week.  Unlike her last treatment (methotrexate), which had a rescue drug, these drugs stay in her system and continue to work. Therefore, her blood counts will be effected throughout the week. The drop started on Saturday as her WBC count dropped from above 8 to 6 to 3. We will go back to the City of Hope on Wednesday for some blood work, a shot of neuelasta (which will help the white blood cells rejuvenate) and probably a blood transfusion.  The thing to be most worried about is if she gets an infection. Therefore, if she gets a fever she will need to be readmitted.  

 

The plan is to monitor her this week at home (come visit if you are not sick, especially over the weekend as Ede and I will be in Iowa) and then at some point next week take another MRI.  Hopefully the MRI will show that this chemo has had an effect on the tumor's growth and we will then go back in to the hospital around the 14th for another week of chemo.

 

As always, thanks for your thoughts and prayers.

 

Jess, Tia and the girls

 

October 22nd

Hi

First let me thank everyone (old friends and new friends) who helped us meet with so many wonderful doctors and researchers during the last week.  What we found out is that not only is Tia unique (well, I guess we all knew that) but so is her cancer.  No one has seen a case exactly like hers.  Therefore, there are lots of different opinions as to the next course of treatment and even more regarding the follow on course.  Whether we go to radiation first or chemo? And if we do go the radiation route do we do whole brain or IMRT? Or do we use a gamma knife in lieu of radiation? Or do we wait for an exciting new phase one trial in high intensity ultrasound? And what do we do after the first round...

As we made the country-wide research trip we kept looking for that low-risk, high-reward solution.  We basically set up a 2x2 matrix of risk and reward. We knew we didn't want to be in the high-risk/low-reward box and were hoping to get something in the low-risk/high-reward box. Unfortunately all options seem to fall into the other two boxes. We thought this would be the case before we went off, but still wanted additional information. 

Our meeting with Steve was on Friday at noon.  I went in to work early on Friday and for all those with Bloombergs you know there is always a daily quote.  As I logged on to the Bloomberg on Friday, the quote was "Advice is what we ask for when we already know the answer but wish we didn't". Weird.

We have come full circle and concur with Dr. Forman's advice of starting IMRT (radiation) at City of Hope with Dr. Wong next week.  We go in on Monday at 8:30 to start the mapping of the radiation fields and all the prep work and hopefully start the actual radiation later this week. Once I know the schedule I will send a separate email to all of you who have indicated you can drive with Tia.  The current plan is to do 4 weeks (20 treatments) of radiation - so that will be most of the month of November.

Have a great weekend

Jess/Tia and the girls

Monday October 17th

Hi

 

It has been a heck of a week.  We went back east and through the help of friends (both old and new) we were able to visit with Dr. Morton Coleman.  He is a wonderful man and helped us think through our options and next steps.  Combining his visit with everything we discussed with Dr. Stephen Foreman (our main doctor who we love and admire), we think we have a game plan. Unfortunately, there isn't one path to follow with guaranteed results. Rather, there are a number of choices - each with its own set of risks and rewards.

 

From everyone we met with and everything we know, the first line of attack (methotrexate and temador) was clearly the way to go. Unfortunately, Tia's cancer is resistant to this line of attack. Given that the two chemos she took are vastly different, it is likely that other chemos will also not be effective. Therefore, the second line of attack will be radiation.  Here is where the first choice must be made.

 

There are 2 main thoughts on radiation.  Whole brain radiation and IMRT (intense modulated radiation therapy - or pinpoint radiation).  The pro to doing IMRT is that it is limited to a specific part of the brain and therefore the possible damage to brain function is limited. The con to IMRT is that if there are other, undetected cancers inTia's brain, it will not irradiate them and they will continue to grow.  The pro to whole brain radiation is obviously its prophylactic effect.  The con is the possible diminution of brain function.  As Tia and I both believe the words "radiation" and "brain" should rarely, if ever, be used in the same sentence, and on advice of most of the doctors we have seen, we are opting for IMRT.  We will fly back to LA tomorrow and meet with the radiation oncologist on Wednesday with the plan of starting radiation therapy on Monday the 24th.  For those who have volunteered to help drive Tia, I will send a separate email and schedule once her times firm up later in the week.

 

After radiation, there are 3 main thoughts on the next step.  Again, there is unfortunately not one path that is both low risk and high reward.  The first path is to do nothing and just monitor Tia.  Obviously this entails no risk immediately as there is no operation, but if a cancer should reappear we have used the 2 most effective treatments (methotrexate and radiation) so we will be left with a number of less desirable alternatives.

 

The second path is to do another auto stem cell transplant.  The risk of mortality/morbidity of the operation is minimal since they are using her own stem cells and there is no risk of rejection.  The problem is that she had an auto transplant back in 2006 and obviously her stem cells have an issue as she continues to create cancers. So, we may go through the auto stem cell transplant and not decrease the likelihood of a caner reoccurring.

 

The third path is to do a mini-allo (3rd party) stem cell transplant. The risk of rejection makes this a much more dangerous procedure, but the rewards are also much greater.

 

As we do not need to make a decision on this until after radiation, we are still weighing our options but leaning toward the mini-allo transplant.

 

Through out all this, Tia has been strong. When she gets down, we chat about what we have gone through and what we have to get through. While there are lots of possible outcomes, there are 2 major ones - the cancer beats Tia or Tia beats the cancer. If the cancer were to beat Tia, then it is important for Tia to get up every day and make the most of that day with friends and family. Similarly, when we realize that Tia has beaten the cancer, then it would have been foolish for her to have wasted days fretting over something that didn't come to pass. So, again, it is important for her to get up enjoy the day with friends and family. Since, regardless of what happens, the actions for today should be the same, it is therefore our plan to make the most of everyday.

 

With that in mind we had a great week back east.  We saw dear friends for dinner on Wednesday and Thursday and a play ("Book of Mormon") on Saturday.  Rae got to join us for Thursday and Saturday (as she fit it in between travelling to Barcelona and hopefully getting an education at Penn).

 

On Saturday night we went up to our farm and had a wonderful party for lots of Tia's family and friends here yesterday. It was loads of fun even though I got demolished in football and the Brewers lost (Tia was devastated).  

 

Today we are hanging around the farm as Tia is gathering "exotic" fruits like apples and concord grapes to load up the plane tomorrow as I guess they don't have such things in the backwaters of the Pacific Palisades.  We will be home tomorrow so anyone who wants a taste of these rare delicacies can stop over and visit Tia later in the week.

 

Again, thanks for all your thoughts and emails.  They really mean a lot to Tia and all of us.

 

Jess, Tia and the girls.

 

PS - I can't help throwing out a promo for our friend Alan's movie (And They're Off) which is premiering Saturday at the arc light in Hollywood at 5pm.  Go see it when it is available!