Day +2

10/9/15 9:00am-Good Morning.  Steven received O- designated donor platelets this morning.  We are sure they are Ashley's!  How awesome is that!  :)  As Uncle Eddie says, "Clark, that's the gift that keeps on giving!".  And that it is, at least for their 3 day lifespan.  I have been receiving emails and texts from many of our friends that are driving here to donate platelets and /or blood and several are donating a second time!  Steven will need platelets for at least another week if not for 2 weeks, until he starts to make his own.  Steven also received a unit of RBCs.  The parameters are clear, he gets platelets when they fall below 15,000 and RBCs when his HGB is below 8.  We appreciate all of you!

We can't say enough about the love we feel for all the help we are getting from our friends and family.  Thank you!!

And speaking of, we just had a good friend come to visit.  It was so nice to see someone from home and to catch up.  Maybe next time, we can leave the room!  Thank you for coming!

11:00-So back to Steven's room....  There is a chair that converts to a bed if someone wants to sleep in his room.

Of course, if you are in his room, you have to wear a mask and gloves and that would be through the night as well.  And not only are you welcome to sleep in his room but you would have to use the bathroom outside of the floor by the elevators.  I say shenanigans.  It's not that I'm a prima donna.  We are from strong Midwestern stock, the people who grunt out a baby and continue to detassle corn.

My excuse is as caregiver, I have to be able to walk in the morning so I'll take a raincheck on sleeping in the room.  

Another factor to not sleep in the room, is the Arctic quality of the air...his choice.  He is allowed to request any temperature for his room.  The nurse calls environmental services and they adjust it from a remote location.  He is as happy as a clam with his 70 degree room.  I on the other hand, have been wearing a fleece.  Every man who comes to visit will not want to leave if there is a football game on.  

Home Comfort

10/7/15 8:00pm-For being sequestered in one room, the days really go fast.  I'm sure Steven won't be saying that after he has been here a few weeks.  The entire 6th floor is for Bone Marrow Transplants. There are 36 private rooms divided into 2 wings and unfortunately, every bed is taken.  When one patient checks out in the morning, another lucky winner checks in in the afternoon.

We are allowed to decorate but can't bring any plants or flowers and only certain balloons are allowed.  Ashley and I came up with a system to hang cards.  You will quickly see that we didn't excel in engineering or physics.  It works but it isn't pretty!  I hear a collective snicker from all our engineer friends!!

One of the helpful things we brought was a power strip that looks like an octopus.  Ashley and Steven read that there are never enough plugs in a hospital room and recommended bringing a power strip.  Because after all, Steven has to charge his personal iPhone, work iPhone, personal laptop, work laptop and iPad.  Why we didn't buy stock in Apple products in the 80's, I'll never know but always regret!

The exact name of this contraption is a Power Squid Outlet.  Steven bought it for Boy Scout Summer Camp.  That confuses me since I thought the Troop was camping in tents and where was the electrical outlet???  Hmmmm...  I'll have to figure that one out later.  The awesome thing about this Outlet is it accommodates any size plugs.  It's a pain when you have larger plugs on a traditional strip and it covers more than one outlet.  This is pretty brilliant.

We also brought photos to remind Steven of happier times and good things coming ahead.

Exhaustion and Nausea

10/8/15 2:00pm-All the chemo, drugs and low blood count finally took it's toll presenting in exhaustion and nausea.  It was totally to be expected but came on quickly.

While Steven was having fun reacquainting himself with lunch, I took a walk to the Wishing Trees. They are cherry blossom trees planted in 2012, a Japanese tradition. If you come to visit, these trees are in the front of the main entrance.  There are tags and markers for you to write messages and then hang on the trees.  Many messages are wishing there was no more cancer.  Most are personal tributes.

               

Day +1

10/8/15 9:00am-It was great to get here this early today.  I got to meet the endocrinologist, physical therapist and hematologist on the "team".  The physical therapist rolled in a recumbent stationary bike that Steven had to "ride" for at least 20 minutes.

We did a lot of research before deciding to seek treatment at City of Hope.  We were willing to relocate for the best possible chance of recovery.  No point in saving for retirement if there isn't going to be one.  City of Hope is one of the leading bone marrow transplant institutions having done more than 10,000 transplants.  They truly treat the entire patient and with the threat of GVHD will continue to monitor Steven for many years.  One of the early leaders said, "There is no profit in curing the body, if, in the process, we destroy the soul".  City of Hope started out as a TB sanatarium and is now on the cutting edge of cancer research with significant advances in modern medicine.  Every nurse, doctor, and staff member has been fantastic.

The title today is Day +1.  There is a countdown before transplant that includes chemo and GVHD drugs.  These days are minus.  The day of transplant is 0 and all days after are +.  The first 100 days after transplant are critical.  Due to low counts, the risk of infection is great and some patients have a variety of reactions due to GVHD.  As you can see, today is only day 1 so we have a long way to go! This is a marathon, not a sprint.  Next time, maybe he can just break a hip!  Just kidding!

11:30am-One of Ashley's very good friends has come to take her to LAX.  I cannot believe she has been here a week.  Many of you have texted, called and emailed her coordinating numerous events to help us negotiate this blip in life.  I can't thank her enough for all she has done to help Steven and especially me.  I am so grateful for her help! She did everything from making dinner, to picking up Koda poo, to grocery shopping, and serving as support system extraordinaire!

I almost forgot to post this amazing video she took of the stem cells going through the tubing last night.  It is a short video but if you look carefully you can see the cells.  After most of the product was transfused, they flush the bag several times to get every last one of those amazing cells.  It is during this flushing that you can see them.

Well, it doesn't play for me either.  I have to consult my IT person after she lands in MD!  Sorry about that!- UPDATE: Ashley fixed it...because she's amazing. This is definitely not her writing this...It's easier to see on the phone, but what you're looking for is white specks flowing through the tubing, which is illuminated by the green light.  Pretty awesome.

Stem cells in the building!

10/7/15 8:30pm-The stem cells have arrived fresh from Germany! They were recounted at COH and there are 5 million of them.  Steven said that there are supposed to be 2-10 million cells.  His numbers are right in the middle.  He is getting Acyclovir and GVHD drugs currently.  After that he will get hydrocortisone and Benedryl and then the stem cells!

10:15pm-And here they are, life saving stem cells!  We couldn't be more thankful!

    

                 

It will take an hour for the cells to be infused.  They are transplanted using gravity versus through the IV pump so as not to damage the cells.  Now go and populate and be fruitful!

Happy "New" Birthday!!

10/7/15 12:00pm-Steven's nurse came this morning and says, "Happy New Birthday!!".  So apropos!  This will definitely be a birthday to celebrate next year.  Everything is on schedule with the cells still arriving at 7pm, to be infused at 9-10pm.  The chemo did it's job, his WBC count is down to 100 cells/mcL.  Lots of room for the stem cells to move in and set up shop.

Before we arrived (at 6:00am!!), Steven received his first bag of designated donor platelets!  They were typed B+.  What this means is, the platelets were from one gracious person who came to COH to donate for Steven.  Thank you, thank you, thank you!

4:30pm-The social worker just checked in.  When we came here for the first time, we had to meet with a bevy of people including a social worker.  They asked a bazillion questions, how do you feel, are you anxious, what support do you have when you go home, etc...   I wanted to answer these questions either sarcastic or funny but they aren't asking me!

5:00pm-We are watching the Cubs/Pirates wild card game.  I'm a Cubs fan and Steven is a White Sox fan.  I wonder if he will be a soccer fan after his stem cells populate.      

As you might imagine, it is going to get boring being in one room for 4-6 weeks.  When his white cell count gets 1000 cells/mcL he will be allowed to leave the room (with a mask of course) and can walk the halls.  I have flashbacks of the scene from One Flew Over the Cuckoo's Nest of Chief breaking out and running to freedom.  We aren't going to do that but it is a thought...
Ashley thought of an excellent way for her dad to entertain himself and get exercise while sequestered-she brought and set up our Wii.  The physical therapist who came in was quite impressed.  Apparently there is a Wii on the floor that all the patients have to share.  It's a great way to exercise and move around, because don't forget, Steven has been tethered to an IV pole since the day he was admitted.  I want to come up with a name for the IV pole- something other than "second wife".

The Night Before Transplant and all through the house….

10/6/15 5:15pm-Here is a pop quiz...

Quiz question #1: What do you get if you transplant an A+ donor with a B+ recipient who has uber anti-A antibodies?  Hemolysis!!  Steven was well tethered to a plasmapheresis machine when we arrived tonight.  They were replacing his 6100 ml of plasma with 5500 ml of Albumin.  The last thing we need is stubborn Swedish anti-A antibodies fighting with German A antigens.

Quiz question #3:  What will his blood type be?  He will now be A+.  Will I really have to explain to anyone how our kids are all B+ or O+ when their mother is O+ and their father is A+??  Only a bunch of science geeks know their blood type.  We had no idea Steven could receive bone marrow from someone with a different blood type.

Quiz question #3:  What else was plasmapheresed out besides anti-A antibodies?  We held a vigil for 60 years of wonderful antibodies and plasma proteins.  Hopefully I won't have to find a pediatrician to repeat all the childhood immunizations, although he will have to have them all again.

 

Steven will receive an allogeneic transplant, cells coming from a matched unrelated donor.  So where are the stem cells now?  The gracious German donor received Neupogen 3-5 days ago.  His stem cells were harvested (could take 1-4 days) and taken to a lab to be cleaned and counted.  The stem cells will be flown to the US by medical courier around 7pm to LAX.  The courier must stay awake, gently rock the bag of cells every hour, and keep the bag at a specific temperature.  The cells will be taken to City of Hope where they will be cleaned and counted again.  I forgot what Steven said about how many cells were acceptable, it was in the millions.  Some poor lab tech going 1, 2, 3, 4, ……  Steven will receive his new stem cells around 9-10pm.

Thank you to everyone who have already donated platelets at COH, donated blood, set up a blood drive (save the date-December 13), offered to bring over food, prayed, is thinking about us, will take care of Koda, visited Steven at COH, and have kept in touch!  I apologize that I haven't been able to answer everyone but will hopefully catch up soon.