December 24, 2013

Merry Christmas to all.

We had a surprise yesterday when we went to the doctors.  George was started on chemo three weeks earlier than planned.  His doctor does not want him to continue to slide as he has been doing.  The chemo usually has a positive affect right away.

This should help the kidneys start acting properly and help George to remain stable.

As of this a.m., he is fine.  No ill effects from the chemo at this point.  He has three twenty-one day cycles of one type of treatment and then another five or six weeks of something else.  Too much detail to grasp on one day for us.  Happy Holidays. j

December 19, 2013

Hi, George is home from the hospital.  He is much better.  His stem cell transplant is actually going well.  His light chains and amyloids are going down and his blood counts are good. 

The problem (this week) is that his kidneys still pee out all the good stuff and his systems are not supported, thus, the crashing.  This Monday when I got him to the hospital, his oxygen saturation was down to 69% vs 100%, and his heart was racing, and blood pressure plummeting.  Let's just say, everyone was excited to see him !!!

The new plan is for George to see the doctor several times per week and have blood tests to determine is he needs fluids, albumin, or blood.  This way he won't take a long slide before we catch him.  This should keep him feeling much better and allow him to get some energy back and get stronger for chemo in January.  His kidneys will actually start to work better over time as the chemo knocks out the remaining amyloids, but it will be a good year until he feels like a strong man again.

He is good today; more himself....giving me orders...obsessing on the small stuff,  and controlling as much as he can.  Thanks for checking in.  This is quite a journey, and he has endured so much.  It really helps us to know you are out there and sending up prayers and good thoughts.

We are rolling right in to Christmas....enjoy it. j

Dec. 17, 2013
Hi, Sorry to report that George is back in the hospital.  We had a good run of about 16 days, but he started to go down hill this weekend.

It appears that his kidney function is a little worse and because he doesn't make enough albumin, his blood volume gets low, causing all kinds of problems.

They will give him albumin and then probably a blood transfusion and hope to get things back in balance.  Doctors say this will be the dance until his light chains (the disease) go away and the kidneys start to recover.  Hopefully this does not alter the plan to start chemo on Jan. 7.

Happy Holidays.j

Dec. 6, 2013
Hi, Sorry I haven't been blogging.  Things got a little 'busy' but are calming down now.  George was back in the hospital and released the day before Thanksgiving.  He has had several trips back, which were scheduled, for hydration.

As of today, we've had seven days without a crisis, which is a record.  Hopefully it's a sign of stability.  He is at Youville House, and is pretty much isolated.  His appetite is getting better, and he goes for short walks up and down the hall a few times a day. His flock of children and others have been in to visit, which he really loves.

Right now we have a visit with his doctor in December, and chemo scheduled to begin Jan. 7, 2014 and go for about five months.  His doctor told us he will be back to 'normal' by October, 2014.  This is what we are going for.  Whatever 'normal' was, we'll take it back, anytime. Thanks for all the encouraging words, e mails, facebook comments, etc. 

Thursday, Nov. 14, 2013
George is out of the hospital !  He is 'dazed and confused' after four weeks in a room, but he will adjust.  He is settling in at Youville House in his little, sterile apartment.  The staff here all know him, and, as with anyone, will give him the royal treatment.  His diet is limited as he can't have raw fruits or veggies, or anything with bacteria, like leftovers, or even mayonnaise or jelly that's been opened previously.  He will have physical therapy as well as a good head shaving to finish off the chemo look. 

I expect the primary family will start visiting this weekend, which I know will cheer him up.  I won't describe how hard this has been, and we are now in a new phase, where we hope he will start to gain some strength and get a boost to his sagging morale.  Thanks all for caring.j
ps Happy Birthday, Virginia !!!

Tuesday, Nov. 12, 2013
George is back on track and possibly coming home at the end of the week.  He got out of his room for the first time since admission on Oct. 18.  He headed right for a big window with a view of Boston.  White cells are growing everyday.  Once he is home, he'll rest up and then start about five months of chemo in January, 2014.  He is looking forward to seeing sons and daughters, et al very soon. j

Monday, November 11, 2013

Thanks for all your concerns and for sending your white cell vibrations to George.  This weekend they started to grow, at last.  George's complications have complications, so it's been at a high price, but each day we hope the worst is over.  Today he can now come out of his sterile hospital room and walk the halls with a mask and gloves.  If he continues to progress and the other issues get resolved, he will be home at the end of this week.  Thanks for checking in. j

Wed Nov 6. George is much better tonight. An infection in his new knee is confirmed. he is receiving meds for it and blood thinners for the small clot. no white cells yet but we are hoping they arrive tomorrow. tag
hanks for checking in j

Nov. 6, 2013 - Monday was a rough day for George.  He spiked a high fever, legs swelled even bigger and his knee replacement knee was very painful.

Antibiotics seemed to help.  They found a small blood clot in his lower left leg, (knee replacement leg) and he now is on blood thinning injections, which is tricky since he has low platelets.

Overall, he seems past the crisis of Monday.  We are waiting for those white stem cells to start to grow.  Hopefully, today we'll get some news that he has started to produce them.  He is on the end of the average spectrum now, at day 15, so those white cells should be showing up soon. 

George is enduring a lot.  He probably won't be home this weekend as we expected.  Hopefully everything will start to level off and we'll see great improvement soon.

Thanks for checking in - your support is appreciated. j

Nov. 4, 2013

This is a journey.  Each day presents a new challenge for George.  Chemo has many effects on the body; and his kidney problems add complications.  Without going into detail, let's just say, we are in a day to day mode.  Everything he is experiencing is part of the process; some people have more complications, some people have fewer.  The staff at Tufts is great and respond to every issue.
If this week goes well, and we start to see some white blood counts, he may get to come home by the weekend.  He is usually quite medicated, as some of his complications have required pain control.  I'll keep you posted. Thanks for checking in.

October 29, 2013
George is holding his own.  Everything is going as planned with his treatment.  The chemo and transplant have an affect on one's body, and he is experiencing the effects.  He usually has several IV's going, with albumin, potassium, calcium, etc., as his body doesn't keep these due to his kidney problems.  Hopefully, once the white blood cells start to kick in, his kidneys will start to respond and start processing out the bad and keeping the good.  It won't be an overnight cure, but hopefully enough to get the fluid out so he is more comfortable.  He is also usually medicated with IV Adavan, which helps him stay calm throughout this.  The good news is he doesn't seem 'sick' they way they described he could be at this time in his treatment.  Thanks for checking in.j

Hi, George is doing as well as can be expected.  The stem cells were transfused Tuesday and Wednesday.  It's quite a lot for the body to endure.  He is being given lots of supplements that his body doesn't maintain on its own due to the kidney issue.  The challenge is to keep fluid down enough to still support his kidneys, but not so much that it affects his heart and kidneys.  The effects of the chemo and transfusion should start to really kick in this weekend. Cards can be sent to Tufts Medical Center  860 Washington St. Boston, MA 02111 Unit North 8.  I'll keep posting to report how he is doing.  Thanks for caring.j

Chemo has begun. Sorry for the delay in posting. I needed some private time with my friends Ben and Jerry. George tolerated chemo well. Another round today. Tues and Wed are the days the healthy stem cells go back in. He will feel pretty bad by next week at this time. They are getting the fluid down and hydrating him where he needs the fluid so he feels pretty good. Phone calls welcome he has his cell. Love to all j

Good news today. George is holding his own and is on schedule for a week from tomorrow to be admittd to tufts bone marrow transplant unit for two days of chemo and a stem cell transplant. He is his usual positive self and happy to be back on track. thanks for checking in. j

George is home in Cambridge.  He was discharged from Tufts Medical Center yesterday after receiving some much needed potassium, albumin and calcium.  His condition is complex, as his kidneys do not filter properly, and his potassium and albumin get depleted, which has consequences.

Unfortunately, this setback caused his doctor to postpone the chemo and stem cell transplant for a week.  At this time, he won't be going back into the hospital until Oct. 18.  As you can imagine, George is disappointed, but determined to rest up and be ready.  Thanks for your kind thoughts and e mails. j

George had some complications arise and is spending the next few days at tufts keep him in your prayers so he is cleared for the transplant j

Friday October 4th

Tuesday October 1st

George gave himself the last injection today .after four hours on the apherese machine we waited two more hours for the lab to confirm he had exceeded the goal of producing over eleven million stem cells. Next he had the central line removed. Nice people at the neeley cancer center. Thurs and fri are cardio and renal consults. if all goes well George will go into the hospital on Oct 11 for chemo and the infusion of his stem cells. George says he is feeling as good as possible. fatigue is the biggest issue thanks for keeping track of us.

big day

Today George had a central line placed in his chest. that was followed by lab tests. his shots worked very well and he responded really well producing lots of white cells.  This afternoon he was set up on the machine to take out his stem cells. they use the central lines to remove the blood and then to send it back. they harvest the stem cells.  It was a three hour process. tomorrow another session. George remains in good spirits  somehow .  Thanks for all the messages and encouragement.

Friday, Sept. 27, 2013

Today was George's appointment to have a cardiology consult and get his first injections of Neupogen which will make his bone marrow produce white blood cells.  He will inject this for about seven days.

I thought I'd put on my big girl pants and drive us into Boston for the visit.  We've taken cabs other times, as I didn't have enough courage to drive and go to these appointments.

I don't know where they moved the Kneeland Street exit from I 90, but, after circling Logan Airport, and driving all the way back to Cambridge, we ended up in a cab anyway, and 45 minutes late.  Fortunately, our stem cell nurse is great and worked around us.

George will inject daily until his tests indicate he has produced 10 million stem cells that can be taken out (also next week) and readied to be infused back in when he is hospitalized in October.

We go back to the hospital on Monday, (using the gps) and they will insert a catheter in his chest so they can use a central line for the chemo.  If his counts are good, they could start the apheresis (harvesting cells) on Monday.

George remains in good spirits (except for the tour of Logan, but who can blame him) and does a lot of resting.  His worst complaints are fatigue and all the fluid retention in his legs and arms.
He will see a new nephrologist on Monday as well, and hopefully, can get some more meds to reduce the fluid retention.   More to come.

Thanks for all the well wishes. j

George has been approved

Hi, Thanks for your concern about George and me.  If you are reading this, you already know that George has been diagnosed with a rare blood disease, Amyloidosis.  If you look it up, he has the primary or AL type.

Basically, in layman's terms, his stem cells are making Amyloid, which gets into his blood and can destroy the organs and systems.  It's a hard disease to diagnosis, because it is insidious until a major organ is affected.

In George's case, it was his kidneys.  The good news is, other organs seem ok and there is a world renowned specialist at Tufts Medical Center.  We are under his care.

The plan now is that George will take injections that will help produce many stem cells, starting Sept. 27.  Then he will go through a process to harvest a million cells from his blood.  This is a two or three day process on an out patient basis.

He is scheduled to be hospitalized at Tufts Medical Center on Oct. 11, 2013 for chemo and a stem cell infusion of his own cells.  After that, 100 days of laying low to avoid infection.

Right now, George is in the best mood you could expect from someone in his situation.  He is not in pain, but always fatigued.  The issue with his kidneys causes swelling of his legs, feet, arms and face. 

You can e mail him at jgparsons921@gmail.com.  He will be learning to use e mail and Skype!
Thanks for your concern and prayers and wishes.j