Now an inpatient

Happy New Year!  We are officially ringing in the new year at DHMC with hope and faith for a healthy 2008 and beyond.

Pam was admitted today.  She had a neutropenic fever last night (very mild) and they wanted to watch her today closely.  Her blood pressure is also on the low side, so they decided to keep her in full time.  She will spend the next few weeks here as we wait for the blood counts to slowly rise.  She feels pretty good right now, but is really tired and says it feels kind of like mild case of the flu. Fortunately we have plenty of college football to watch!!

I was able to scoot away today and go to Pico with the boys and their cousins.  We had a great time!

Pam says that when she gets up for her midnight vitals check, she will toast you all with Dick Clark.

Day +4

So I thought I would take you through a typical day in the life of Pam and I right now.  If you have ever seen the movie Groundhog Day with Bill Murray then you can already get a mental picture.  We wake each morning at the Residence Inn around 7:30 am.  I go down and get breakfast at the buffet and Pam slowly wakes herself up.  We head to the hospital (.5 miles) for our daily 8:30 check in.  We slide into the room that is designated for Pam (we use it daily on an outpatient basis right now, and she will eventually be admitted to it full time when the time comes) and they take a blood sample and vitals.  This dictates her daily regimen.  She gets hooked up to fluids because her blood pressure is usually low.  They add magnesium or potassium as needed, right now about every other day.  She also gets a chemo. called Methotrexate that supresses her immune system.  This all takes anywhere from 2-4 hours depending on how many fluids they give her.  We also have a check in with the doctor on call to examine her and just look for symptoms they are watching for.

At 9am every day Pam gets her morning dose of drugs:

Levaquin - antibactierial

Acyclovir - antiviral

Voriconazole - anitfungal

Nexium - acid reflux

Cyclosporine - immune supressant

She takes these all in pill form at 9am and 9pm daily.  We have a "Blue Binder" that we keep track of all pills taken and when they are to be taken.  My job is to check off that it was done.  Pam also needs to track all of her fluids in and out.  So we write down everything she drinks in fluid ounces, and measure all fluids out in ml.   We also write down everything she eats, her temperature when she wakes up and goes to bed, and any other things we notice.  So far her symptoms are fatigue, tingling and light headedness due to low blood pressure (90/54), and mild insomnia.

After the morning hospital visit, we head back to the hotel and get some lunch.  We then either go for a walk outdoors, or Pam takes a nap.  We watch TV, read, and plan for dinner for a couple of hours and then actually eat dinner (quite a process, as Pam's diet is restricted now for food safety).  We then try to find a movie on TV, or some football and then ease into bed.  At 9pm Pam takes her meds again and we retire for the day.

We wake up the next morning and do it again!  Every day that we get outpatient is great, the ability to change locations, get outside, and stretch out a bit is fantastic for Pam mentally/emotionally.  Hopefully we will get 3-5 more days of that.  We were actually able to drive up to Bethel yesterday and visit the boys for a couple of hours!  A great medicine for Pam and the boys.  She kept her Mask on and lots of hand washing!!

Day +1

The cells are in!  Go get 'em boys!!!   

The cells were infused yesterday afternoon and we now hold on for the ride.  It will take a few days for the effects to really start to kick in as the immune system is gradually tapered.  We may get to become outpatient today, which means that we will go .5 miles to the hotel and hang out there.  Pam is feeling pretty good today except for the fact that she didn't get much sleep last night.  The docs will be closely monitoring her liver, heart, lungs, and kidney function.  As long as they continue to do well and she does not run a fever, then we will stay outpatient.  We will obviously do whatever they tell us and be happy with it!  Looking forward to the New Year and all the happiness it will bring.

Troy and Pam

Day -3

Today is day -3 which means that we are 3 days from the cell infusion. That will happen on Wed. the 26th and is considered day Zero. Every day after that gets a + (+1, +2, etc) in front of it. It got harder for Pam today. She is wiped out and looks tired and pale. She is already in bed since 6pm. Today she got the second drug in the chemo regimen and then it followed with 4hrs of hydration. This dosage was also accompanied by several other drugs to help with naseau, bladder, and immune system. So lots of foreign material pumped into her today. We are hoping to still go home tomorrow after the chemo. It should be finished around 4/5pm and then we can head home for a day "off". We will then come back down early on Wed. to get ready for the cells that will go in around 2pm or so.
Pam continues to be a shining light in a situation that no one should ever have to endure.
We will post again after the infusion.
Troy

What a difference a few hours makes. AKA:Here we go...

So...We got a phone call on Tuesday afternoon (shortly after Pam did the blog update) and were told that the procedure was being moved ahead. So as I write this, Pam is hooked up to her first dose of pre-transplant chemo. We are at DHMC and will be here until Christmas Eve day. They will then send us home for X-mas eve and X-mas day. We will return on the 26th for the transplant (Dougs cells get infused). Right now we are outpatient, staying at a Residence Inn across the road from the hospital. That will continue for this first round of chemo until the 24th. When we come back on the 26th for the cells, Pam will be admitted. She will stay in the hospital for at least 2 nights. If everything is going well then they will let her become an outpatient again and stay at the hotel (She will need to be down here for about 4 weeks). If (when) she starts to run a fever, have problems with fluids, not able to eat, blood counts or pressure gets to low, then she will be readmitted until they feel she is well enough to go home.
Why the hurry up? Originally it was going to start on the 17th and we thought we would be here for x-mas. Then they thought after the 1st most recent PET that they might hold off and see if the chemo kept reducing the amount of cancer. Then when Dr. Meehan looked at the most recent PET scan(2nd) and all Pam's records he and his team decided to move ahead as the cancer is not going to reduce any more.
Bottom line is they did a great job of getting us in here for a faster treatment, and planning the "off day" for X-mas. (thanks Idalina)
So here is our Christmas/Holiday card for this year:

Merry Christmas and Happy Holidays from the Paradee Family, Here's to a HEALTHY and HAPPY 2008!!!!!

quick update

hello all -
almost two weeks has passed by quickly since the last posting .... filled with MANY appointments, tests and consults during the week and socials on the weekends.

Dec. 10th - our PET was ok; not much change from the Nov. PET - no more receding, but no growth really either. The chemo's work is done. Now it's the transplant's job.
A week of labs, tests, consults, throw in a head cold and bad case of flabitus (?) in my arm, piano/violin recital, three holiday parties, and a snow storm ..... 10 days passes quickly!

We have an appointment with Dr. Meehan on Thurs. and should have our plan laid out then. ALL these test results (PET, x-rays, blood, urine, heart, lungs, dental, PAPS.....) play an EXACT piece of the plan. As well as meeting with many potential members of the team (transplant dr. and nurses, radiation oncology, infectious disease...) that's why it's not quite so simple as giving an admit date)

Most importantly!!!!
Dec.17th - Doug harvested!!! and it went great!! It really is absolutely amazing all that is about to transform out of this!

More to come later in the week
Enjoy the sparkles in the snow or sun shining from the sky , where ever you are
Lots of love-Pam

The Plan is starting to come together

Hello everyone. We have started to get some dates down for the transplant. We met with Dr. Meehan yesterday and walked through some of it. It looks like it will be after Christmas!! Yeah! He seems to think that waiting one more week will not be critical. (he reserves the right to change his mind after he sees the PET scan). In the meantime Pam will have her "workups" done up here in Burlington. EKG, cardio-pulmonary funtion test, lung capacity test, etc. She will also have another PET scan to see what the cancer is doing. The hope is that it is continuing to recede from the Chemo she is recieving now. Her brother (Doug) will be harvested on the 17th of Dec. and they will freeze his cells and hold until they have prepped her for transplant. Right now it is looking like admittance will be on Dec. 31st (New Years Eve).
We are preparing for the long road ahead, but are happy to have a few weeks to partake in some holiday cheer.
Please remember how valuable each and every day with your family is during this hectic season, ignore all the small stuff that just doesn't matter!
Troy and Pam.