One of a Kind

We just returned from an appointment with Dr. Shernan Holtan at OHSU and got some exciting news.  You all know Pam is one of a kind... we now have scientific proof ....

Bad News May Be Good News

To review:

• Two months ago, we learned that Pam's brothers, Mike and Mark were not suitable donors, even though each of them had a 50/50 chance.
• So, we have moved onto step 2: finding an unrelated donor from the bone marrow donor registry.  A month ago, at our last visit with Dr. Holtan, we found out there were 60 potential matches out of the 20+ million people in the bone marrow registry, and that chances were very good that Pam would find a suitable match.
• Today we found out that none of the 60 potential donors was suitable.

So, it turns out that 20 million people; including brothers Mark and Mike, not a suitable match with Pam.  She is one in 20 Million.

How Can This be Good News?

Since Pam can't find a suitable unrelated donor, she is eligible for a stem cell transplant from umbilical cord blood AND, the great news is that 2 suitable units of blood have been identified.

There are some disadvatages to the umbilical cord blood:  there is a small volume of harvestable cells and it takes longer for the immature stem cells to become rough and ready germ fighting machines.  So, cord blood transplant patients are generally in the hospital longer and have to take safeguards against infections even longer than other stem cell transplant patients.



Ready for Tapalaya!

The big advantage is that there is less Graft vs Host Disease (rejection) than there would be with an adult stem cell transplant.  Graft vs Host can be a very chronic condition requiring medication for many years, so having less Graft vs Host is a very good thing.

Also, this means that we can get on with the process right away AND she will probably not need to have another round of consolidation chemo.  We are expecting to get going before Christmas.

We are going out for dinner and music with friends Mort and Tina tonight at a New Orleans style joint we like called Tapalaya, complete with gumbo, jumbalaya, and beignets.  It looks like we have something to celebrate!

Giving Thanks Outside the Hospital

Whiteboard in Hospital
Happy Thanksgiving!!!

Pam's ANC improved dramatically, so she was discharged from the hospital this morning.  Four days seems like a long time.

As always, we are very thankful for the wonderful care she has received.  It is very comforting to know that she has access to world class care so close to our home.  We are very lucky.

Since Pam is still neutropenic, and can't be around a bunch of people and their germs, I am going to go to Thanksgiving at Don and Bonnie's.  I guess I will be eating for two.

Turkey in the Hospital

Pam feels OK, but Dr. Weinstein does not want to discharge her until her white blood count (especially her ANC), puts her out of the danger zone for infections. So, it looks like we will likely be spending Thanksgiving in the hospital.  I am sure it will be kind of nice in an antiseptic sort of way. 



Find Three Turkeys in the Picture

The nursing staff at Good Sam continues to be wonderful:  attentive, kind, and, most importantly, they make a sincere effort to laugh at my jokes.

Pam and I are both very thankful for her great care and for the support, kind thoughts, and prayers of all of our friends and family.

Happy Thanksgiving!


Deja Vu a Vu a Vu

Back in the Hospital

A not-so-funny thing happened on the way to get a blood transfusion this morning.  Pam developed a fever, headache, and swollen neck glands, so she is back in the hospital again.  As I write this, she is going through the now familiar process of getting admitted:  history, chest x-ray, cultures of blood and urine, and IV anti-biotics.

The Routine

This is getting to be so routine that Pam has a hospital bag packed and ready to go at all times.  We have a list of her current medications.  The admitting doctor was suitably impressed that we have everything in order.

Next...

She will be in the hospital for at least a couple of days. Hopefully, we can get the latest infection knocked down soon.  I am thinking we will need to stay away from people for a while longer, so we shall see about Thanksgiving.

Big Words and Tchotchkes

Some Big Words

Pam is feeling a little run down, as expected, since her last round of chemo ended last week.  She has anemia and has thrombocytopenia.  How are those for big words?  It means that she is low on red blood cells and on platelets.

Platelets are the cells that are responsible for blood clotting, so, naturally it is dangerous for them to get too low. A person with thrombocytopenia could bleed uncontrollably.  So, we are going into the hospital today for a unit of platelets. (They look like butterscotch pudding.)

Red blood cells carry the oxygen in our blood stream.  When you become anemic, of course, you begin to get very fatigued.  We are going into the hospital on Sunday to get "topped off" on red blood cells.  (They look like, uhhh ... blood.)

Pam calls this "going to Jiffy Lube to get my fluids topped off", and it is all expected as part of the chemotherapy. 

In the week to come, her white blood cell count will begin dropping off and she will become neutropenic, so she will be prone to infection.  She is on some prophylactic antibiotics now, and we will watch her closely for signs of infection. We have learned to always have a thermometer close by and I will take her to the hospital immediately if she starts getting a fever.

Out with the Tchotchkes

More tchotchkes = more places for dirt to hide, so we are storing non-essential knick knacks, brick-a-brack, souveniers, treasures, keepsakes, and other assorted cute things that Pam loves as the first step in making sure that everything is easy to clean.  (I am attempting to stifle a cheer here.)

When she is in the hospital for her bone marrow transplant, I will get the condo super clean because she will be neutropenic for quite some time after being discharged.

More adventures to come.

Numbers Game

Friends and Family....

We had some discouraging news today.  Dr. Holtan at OHSU told us that Pam's brothers, Mark and Mike, are not a match for the bone marrow transplant.  Each of them had a 50% chance of being a match, but this is a case where 50 + 50 does not equal 100.

So, Pam will have to get her transplant from someone in the national bone marrow registry.  Dr. Holtan told us that out of 20 Million people in the registry, 60 of them are potential matches with Pam and chances are very good that at least one of them will be an excellent match for Pam.

This whole process of finding a willing and appropriate donor from the 60 potential matches, then collecting the donated stem cells is going to take some time.  Since Pam can only go about 5 weeks without chemotherapy, she will, more than likely, have at least one more round of chemo and possibly two more rounds before she can finally get the transplant.

So, wild guess, I don't believe we are going to get the transplant done before the end of the year.  BUT, good news, I am wrong all of the time. Ask anybody. I hope like hell that my streak continues.

Stem Cells and Things That Go Bump in the Night

Last Round of Outpatient Chemo?

There hasn't been a lot to report since my last post. Pam has just finished what we hope will prove to be her last round of chemotherapy before she goes into OHSU for the bone marrow transplant.  She has tolerated the chemo just fine so far.  She went through the same process as the last round: chemo at the clinic Monday, Wednesday, and Friday followed by application of a pump after each session, which gave her another dose of chemo overnight each night.

She will start feeling the effects soon.  She will be fatigued from anemia and prone to infection from neutropenia.  She will need some blood and platelet transfusions.  Hopefully, we can get through this round with no infections or hospital stays.



Glamming Up Before the Party

Other Important News

Halloween

We went to Halloween party at some friends and got the grand prize for best costume. Pam was wearing an outrageous wig, but she kind of somehow pulls it off.



What a Handsome Couple!

My TV

 Got our new TV from Amazon.  Worked right out of the box.  It is awesome.  What a relief!!  I can sleep at night now and my stomach is no longer tied in knots.

 

Getting Ready for the Transplant

So far, everything is unfolding as we were told:  Pam had a couple of prelminary blood tests, her brothers Mark and Mike received a kit to take a mouth swab for DNA testing, those kits have been returned, and we should know the results shortly.  If either Mike or Mark prove to be a good match, great!  If not, we may be to rely on the bone marrow registry for the donor stem cells.

OHSU on Monday

We are going in for our second appointment with Dr. Holtan at OHSU tomorrow.  We may even have the results of the DNA tests by then.  Regardless of the source of the stem cells, Pam will be getting some more tests done, and we will be going to a class for bone marrow transplant patients before she is admitted to OHSU.  I am sure we will know a lot more about the details and get a clearer picture of the timing of all of this when we visit Dr. Holtan.  I am still guessing Pam will get the transplant sometime in December.  We shall see.

More adventures to come.  I'll post another update after our appointment with Dr. Holtan tomorrow.