Category: Amyloid

Amyloid, family, Stem Cell

December 5th 2005 Stem Cell Prep

jaynepike

Tom woke up this morning not feeling too well and was officially diagnosed by Dr. Mom with a “stress” throat. He spent the day with his Aunt Peggy, my youngest sister who always come through for me no matter what!!

Another growth hormone to start the day and George is then hooked up. Now this machine is really cool – it was invented over 30 years ago by an IBM engineer and it has worked so well only minor modifications have been made since then – it’s an automated blood separator device that operates on a centrifugal spinny thing – OK, I’m tired. Basically, it separates George’s blood and places all the useable parts into pouches using the catheter’s input and output valves. Joanne wheeled the machine into George’s room around 8am and finished around 1:30 pm. The platelets and stem cells are then picked up by Missy, who is in charge of freezing (imagine those nick-names!).

The stem cell count came back at 2 million – exactly the goal for the day! The goal for Tuesday will be 3 million. Then there will be enough for the stem cell infusion after chemotherapy.

Some news we did learn today – for the chemotherapy and stem cell infusion, George will be staying at Boston Medical. The current dates are still January 2nd through January 5th, 2006.

Whenever I am feeling overwhelmed (hmm, all the time?), only need to pause and think of all of you keeping us in your thoughts and prayers – thank you!!

Amyloid, Boston Medical Center, Diagnosis, Stem Cell

December 2nd 2005 – Stem Cell Collection

jaynepike

Over 2 million served…….

Yup, that’s today’s stem cell collection count!

So here’s the last few days:

Friday – December 2nd

George’s first day at Hotel BMC (aka Boston Medical Center). He was given a lovely suite with a great view of the Prudential building and a cozy welcome basket (ok – it was really a little pink plastic tub with toothpaste, soap and moisturizer). On the menu today was a tasty lunch of G-CSF, a natural growth hormone designed to stimulate blood growth in the bone marrow. It was so yummy, George had more for dinner.

Poor George with his state of the art double lumen catheter and the first thing done in the cardiac wing is an iv placement! All in all, a truly uneventful day! I love these kind of days!

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Saturday – December 3rd

George’s second day at BMC and he’s going bonkers. The sixth floor is being renovated and I think if his heart monitor could pick up waves that far, he would be there with a level and a power tool. More growth hormone injections. Some of the anticipated side effects are starting – headache and flu-like pains.

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Sunday – December 4th

George did have a fever today, but that is another potential side effect of the growth hormone. Each day his white blood count and potassium levels are checked. The goal is to increase his white blood cells to an extremely high level – normally, WBC (short for white blood counts for those of you not in the biz) are in the 4.00 to 11.00 range. George’s are now 34.60.

Amyloid, Boston Medical Center, Diagnosis

November 27th 2005 – week in review

jaynepike

And so it begins….. here’s a recap of our week!

Wednesday, November 23rd

Tom had a great tour of the Amyloid Clinic at Boston Medical; Dr. Mike was able to spend time with him and answered his questions – like “how are you going to get it out of my Dad’s heart?”. Tom also found more vending machines.

Next George had his echo cardiogram done and Tom and I played tic-tac-toe in the waiting room. The echo took longer than usual – the first technician starting clucking and went to get a more senior technician. He also clucked and brought in the head of radiology to look at the echo. Now George is in the room with three cluckers who are all talking about his heart. Having a Y in the middle of my name makes me want to ask questions. George does not have a Y so we don’t know what the clucking was about but will find out on Monday.

The fashion accessory of the Thanksgiving season is a heart monitor that George needed to wear for 24 hours.

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Thursday, November 24th

Off to Connecticut to George’s daughter’s home. George’s two oldest kids (from his practice marriage) and their families, George’s ex-wife, former in-laws, and his former extended family. I am working on my Karma points.

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Friday, November 25th

AM trip to Boston Medical to return the heart monitor and meet with the most wonderful nurse practioner, Katie Fisher. She reviewed the entire treatment plan and walked us through what to expect in simple terms. Then back to the office where I did cry a bit at my desk – see phase 1 of the treatment plan.

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Saturday, November 26th

My sister, Peg, threw a leftover bash for my family. Everyone in my family brought something for George – from a case of Ensure to the largest bottle of Tums to anti-bacterial wipes! We all said good bye sobbing.

The treatment plan – phase 1

When we met with Katie on Friday, she explained that the normal treatment protocol is all out patient. In George’s case, his team has decided that George is at high risk for cardiac arrest and death at several stages of the treatment. They have decided that for the first phase and possibly for all of his treatments, he will stay at Boston Medical. Now this is actually good news – the team can monitor him with better diagnostics that I have at home (like poking him every few minutes – are you ok?).

What can we expect over the coming week?

Monday, November 28th – We meet with Dr. Sam, George’s cardiologist, who will explain all the clucking and then we meet with Dr. Seldin, who is the head oncologist at the Amyloid Clinic. Dr. Seldin will also have the long awaited “calendar”, but we do have some preliminary dates (which are subject to change).

The first event is the insertion of the catheter that will be used to provide medications, draw blood, etc. – so there’s no need for an IV. The current plan has this happening on Thursday, December 1st. On Friday, George will be admitted into Boston Medical to start the growth hormone injections, which last for four days. This stimulates the bone marrow to produce more stem cells. On the fourth day of the injections, the stem cell collection begins. This will last for two to three days, depending on how much is collected.   Each day of the stem cell collection, blood is drawn from the catheter and processed through a special machine. This lasts from 8:30 am to 1:30 pm; by 4:30 pm, the team knows the count of the stem cells (I guess the little suckers are hard to count!). The total need is 5 to 7 million stem cells but George, being an over-achiever, has vowed to give 8 million!

The second part of the treatment plan, which begins with the chemo, may not happen until January 2nd, but hopefully will know on Monday.

Part of writing this is therapeutic for me, so thanks for being such a good listener. Also I can’t express how much your support, understanding and good wishes have meant to me and my family. This journey totally sucks, but knowing that you are all on my side gives me such strength.

Amyloid, Boston Medical Center, loving wife

November 21st 2005

jaynepike

We spoke with the doctors at Boston Medical Center Friday night and it has been confirmed; George does have primary cardiac amyloid.

So what do we do now? This week the focus will be putting together a calendar for the treatment plan; based on tonight’s conversation, the treatments may start as early as the week after Thanksgiving. As soon as the calendar has been finalized, I’ll send out a copy. Hopefully there will be one day that Tom can come into the hospital with us – he’s very curious about the treatment rooms and where his Dad will be “fixed” and I think he’s heard that there’s new vending machines in that building….

What can we anticipate over the next months? First, it will be really, really bad. Then it will just be really bad. After that, plain old bad and then, the sky turns blue and flowers blossom and things will be start to be wonderful again. So, we will have a dark winter but it will turn into a beautiful spring.

We have been overwhelmed with offers to help in any way. Well, now’s your chance!! George will need distractions during the treatment and recovery. Books on cd would be wonderful! If you have any that you are done with, I know that George would enjoy the diversion.

Let’s pause for a moment and remember all the positive things – we have a diagnosis, there’s a treatment plan, we live in the best location to be sick and we have all of your support. Knowing that all of you are praying for George’s health is such a gift. However, if you would like to send me chocolate, that would be a nice gift too.

Amyloid, Boston Medical Center, Diagnosis

November 13th 2005

jaynepike

What a week!

On Monday, it was the heart biopsy; on Wednesday, it was a skeletal survey. And the good news is — the skeletal survey shows no sign of bone destruction so we can rule out aggressive multiple myeloma – hurrah! The heart biopsy is still officially in the lab — results for all of these tests should be available by the end of this week. At this point, we are working with the amyloid diagnosis but remain cautiously optimistic that it is in the very early stages.

Personally, I think that all the prayers are working!

Friday night George was feeling a bit off and our fab neighbor, Dot, took his blood pressure. It was on the high side so we decided a midnight jaunt to Boston Medical was in order! Boston is so pretty at night and traffic is so much lighter! Made my best time yet – clocking in at less than 30 minutes! Since George just had the biopsy on Monday and there’s something about the term “amyloid” that made the E/R team want to keep him overnight for observation. I kind of like looking at him too so I can understand their reasoning.

Just so you know, I did not cook on Friday night!

On Saturday morning, Drs. Young, Younger and Youngest visited and determined that George was a man of mystery! They poked and prodded but finally decided to release him late Saturday afternoon. Tom and I spent the afternoon with George and explored the whole hospital. Tom is quite fond of vending machines so that was our mission – to find all the vending machines in the hospital! Am thinking we did a good job since I am out of quarters and one dollar bills.

Thanks so much for all your best wishes, prayers and support.

Amazing Friends, Amyloid, Boston Medical Center, Diagnosis, family, loving wife

November 7th 2005

jaynepike

Today was “heart biopsy day” for the Pike family.  Imagine a flexible straw being inserted into your neck – then into the straw goes the tiny little saw that actually makes a ZZZZ sound as it removes little pieces of your heart.

The team working with George today was amazing!  They made George feel so comfortable with their jokes and medications!  Then it’s off to the lab.  A special red stain, called Congo Red, is used to determine the presence of amyloid.  The results should be back within a week.  The heart biopsy results and the skeleton X-Ray will be the final pieces of evidence needed to determine George’s treatment plan.

The day was long; we didn’t get home until a little after 5:00 pm.  George is sleeping now and I have to say that my heart is weary too but knowing that you are all supporting and sending us warm thoughts keeps us going!

thanks for keeping George in your prayers