Day +59 - Day + 76

Every week has been the same, two blood draws and 15" clinic visits.  The nurses that draw from Steven's Hickman line have been really great.  They usually have an interesting fact or words of wisdom.  The nurse today said it is actually a good sign when you have signs of GVHD.  It indicates the donors cells are strong and will have a good chance of a successful transplant.  Steven has a few mild signs of GVHD so I guess it's all good.

We are hoping we don't have to come to COH on Christmas, not that it isn't fun or anything:)  Since our usual clinic day is Friday, they will decide today if we can get by with one clinic day.

The labs are back and Steven will definitely be getting a unit of blood today...hopefully from the blood drive!  Everything is down again, including WBCs, which we now know is a normal cycle.  The first time that happened we were slightly freaked out...in a respectful, professional way :)
Getting a unit today should keep us from having to come back to COH on Friday.  It will be the same drill next week, clinic on Tuesday, possible unit of RBCs, no clinic on New Years Day...hopefully.

We left the house at 7am and made super time, got here at 8am.  I am reminded of the movie Papillon where Steve McQueen says to the guards, "I'm still here you bastards!".  Yep, it is 1:15pm and we are still here.  Steven's RBC unit is ready but there are no chairs available for the transfusion.  Apparently everyone and their second uncle twice removed is here today to avoid the holiday.  We were just asked to go to the HEM Infusion Center.  All of you wonderful, gracious people who donated here at COH know exactly where we are at.  This is where Steven received his major league chemo the week before he was admitted for his transplant and where the donor center is.  We were thrilled to come back over here because they are private rooms versus the clinic area where it is one big room with 6 chairs.  It's actually fun to be back here.  There was so much ahead of us when we were here last, it's a lot more relaxing to be here again and updating the nurses on how everything went.

The unit has been hung and guess what.....it's a Directed Donor Unit from the blood drive!!!

So awesome!!!!    Thank you :)

Hopefully we will leave before rush hour but we are happy to not come back on Christmas Day so no complaints!  

Leaving at 3:45pm.....ish :)

     

City of Hope Blood Drive

A blood drive was held at Holy Cross Catholic Church in Steven's name.  Graciously organized by our good friend, it was an amazing event!

We asked Steven's doctor for permission to go.  He thought about it and agreed people would most likely be healthy since they were donating blood.  I brought Steven thinking he would stay for an hour or two... I was going to take him home and come back to thank everyone.   This was actually the first time Steven went anywhere besides City of Hope since September.

We talked to so many people we knew and haven't seen in so long, it was awesome, almost like a reunion. I was amazed at the people we didn't know who were there to donate.  We both have donated blood so many times, but didn't think about people doing it for us.

Before you knew it, we were there almost the entire blood drive!  We were free to do normal things like talk to people outside of our home...what a concept!  I really didn't fully appreciate that time until now.  Steven was exhausted but being there with all of you lifted his spirits.

The City of Hope crew was fantastic!  Our utmost gratitude to Holy Cross Church, our wonderful and supportive Monsignor, and our amazing friend and organizer of the drive.  We know it was a lot of work and appreciate everything that was done to make it happen.  And what about all the people who came to donate!!!!  It's an uber busy time of the year and 75 people signed up to donate.

We are humbled and honored for the outpouring of support.  City of Hope received 60 usable units.  Those that Steven can use will be set aside in his name with the rest going to grateful City of Hope patients. And believe me, none will go to waste!  It really is the gift of life.  Thank you, thank you, thank you!!!

Day +56 - Day+58

12/5/15-Blood draw, clinic with nurse practitioner, endocrinologist.....Steven will need another unit of blood today.  That's two this week.  The iron chelating medication has to be mailed from a pharmacy in east LA.  I think I mentioned to a couple of people that I won't be picking it up....I have my limits!

12/8/15-Sickness brings out the best and the worse in people.  This covers parking, waiting in line, waiting for their blood to be drawn, waiting for their clinic appointment,...did I mention waiting?  Even though there is a sign asking people to not enter COH if they have a runny nose, cough, fever, flu or cold, the number of people that enter anyway has to be high.  I shouldn't be so judgmental right???  They probably all have allergies....  I feel like I need to be autoclaved when we leave to go home.

It was so great having my sister here.  She cleaned, cooked, did laundry, basically if it needed to get done it got done!  The kids start coming home in less than a week for Christmas so reinforcements will be here again soon.

Day +52-Day +55

The bone marrow results indicate there are no reticulocyte or erythrocyte precursors in the bone marrow....meaning the ABO incompatibility issues continue.  Even though Steven was plasmaphresed while at COH, there is still a war going on and until the GVHD drugs are decreased,  his RBC's will continue to be low.  Needless to say he will be receiving a unit of blood today!  The blood drive in a couple of weeks is coming at a perfect time!!  He will also need to be on an iron chelating agent since it looks like he will be getting blood regularly.  The doctor said the decreased RBCs  will take 3-6 months to turn around.  Steven is so early in the process (I feel like we have been doing this forever) that they won't consider lowering his GVHD drugs for a few months.,  Like I said early on, this is a marathon not a sprint.  His WBC's have increased and his platelets are still normal so that is good news!
The kids are gone but my sister is here from Illinois.  She didn't get to my house until noon and has already vacuumed, dusted and planned dinner....it's good to have reinforcements!!  More fun on Friday.  We see the nurse practitioner and the endocrinologist after our regular appointment.

Day +48 - Day+51

Happy Belated Thanksgiving!  We hope you had a great day with family and friends.

Tuesday's clinic was one I wish I didn't miss.  The kids are home and are taking their dad to COH for his clinic visit.  This was great but I wanted further information after talking to them.  His counts were still low and the doctor wasn't sure why.  Many possible causes, so many that to cover all their bases, Steven had a bone marrow biopsy, on the spot.  Hopefully we will get those results today.  He also received a unit of blood.  He probably needed two but they want to be conservative so he doesn't get a high iron level.
  

Just saw the doctor.  Bone marrow results not back yet.  CBC counts are the same...drawing more blood for other possibilities.  Ordering a new medication that our insurance doesn't cover, oh good.  They said they are not concerned about the counts.  It sometimes happens and it makes sense.  It takes blood cells120 days to regenerate and we are not even 60 days post transplant.  Steven is still B+ meaning the donor cells are a little behind in producing RBCs and the RBCs in circulation are still Steven's.  This is the reason for the Blood Drive in December :)  WBCs are low but stable and platelets are normal.  Also getting a chest X-ray for a dry cough that he has had for 2 weeks.  Maybe we will catch a little lunch before seeing the endocrinologist this afternoon.

Went to the cafeteria to get lunch and we had to really think about what he could eat.  Nothing under a warming lamp, no lunch meat unless it's heated to 140 degrees, how hot is the soup?, is there honey in this dressing?,...  He ordered a hot dog, I felt like an abusive wife to pay for a hot dog but it was hot and followed all the food criteria.  He ordered a Sprite before I could say maybe not a good idea before meeting the endocrinologist...  

The chest X-ray is normal.  Doctor said he could have a virus, nothing catastrophic.  Waiting for the endocrinologist.

Day +40-Day +47

It's the holiday season.  I haven't posted anything in a week.  Last Friday, Steven's counts all went down.  They added two tests to look for antibodies on his RBC's, one of which is a Coombs Test.  We will get those results today.  Steven explained to me that it isn't unusual for the WBC's to fluctuate because White Blood Cells migrate into tissue and other parts of the body hence taking them out of circulation.

We did find out the results of the Chimera Test that was drawn last week.  The last time I heard the word chimera, it was in reference to our daughters over the top 6th grade mythology project at St. Leo the Great School in NJ.  She did a paper mache project of a chimera which was quite large.  It took two garbage days to rid our home of this beast.  Here is an explanation of the chimera related to bone marrow transplants from Seattle Cancer Care Alliance:

"A Chimera was a creature in Greek mythology usually represented as a composite of a lion, goat, and serpent. Contemporary use of the term “chimerism” in hematopoietic cell transplant derives from this idea of a “mixed” entity, referring to someone who has received a transplant of genetically different tissue. A test for chimerism after a hematopoietic stem cell transplant involves identifying the genetic profiles of the recipient and of the donor and then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue."

With that said, Steven's chimera test showed that he has 100% donor cells in circulation.  He could still have some of his cells in his bone marrow.  The only way to tell what is going on in there is to do a bone marrow.  They are still saying we don't need one at 30 days, the normal time to do one, because he counts seem ok for the time being.  He will get a bone marrow at the magical 100 day mark.

Steven's Coombs Test is normal.  They are going to blame the decrease in RBC's to medication and are suspending the prophylactic antibiotic Bactrim.  

Day +36, +37, +38, +39

Another morning in beautiful downtown Duarte.  A blood draw and then clinic visit.  Besides all the regular tests, they also drew blood to run a test that tells how many cells have engrafted in the bone marrow.  Usually, they do a bone marrow at 30 days post transplant but since our counts have been increasing they won't do one until 100 days.  We are seeing a nurse practitioner again today because our MD is doing rounds at the hospital.
Steven's WBC and platelet counts are in the normal range but his RBC's have dropped again.  His glucose remains high and his A1C is now elevated.  The A1C tells you if the glucose has been elevated the last 3 months.  When we were still at COH, the endocrinologist said it was due to the meds but we will be seeing him again the week after Thanksgiving.  His creatine is creeping up so the RN will be talking to our MD and calling later.
Steven can be left for an hour if I'm 15 minutes away.  I hear Aretha Franklin singing "Freedom" in the Blues Brothers movie.  I ran...I mean, walked briskly, and did a few errands and actually saw people I knew.  I miss those small but significant social moments.  Even more importantly, Steven is doing well considering what his body has been going through.
It's nothing short of a medical miracle to obliterate someone's bone marrow and introduce a strangers stem cells to make a new functioning bone marrow.  We aren't going to do anything to jeopardize this gift of a second life.  We will be following the rules and do as we are told even if it feels like we are on house arrest.  This will be a first for me, following the rules.  Cooking for Thanksgiving will be....interesting.  Everything has to be ready at the same time.  Good thing I will have reinforcements to help.  We are up for the challenge.
The nurse practitioner called and they are going to adjust one of the GVHD meds to keep the creatine in the normal range and maybe even lower his glucose.  It's a balancing act that will continue for a long time.
Our most awesome friends who used to live across the street but now live in Florida, are sending Steven a joke a week.  It's such a great idea!  They are a very clever family and we miss them very much.  Here is one of the jokes:
What do you get when you divide the circumference of your Jack-O-Lantern by it's diameter?
Pumpkin Pi