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.