Day +106 - Day +112

1/26/16-Our clinic appointment is later today and there are many more people here.  We are waiting anxiously to see if Steven's WBCs have increased after two shots of Neupogen.  He already knows he will need blood, just by how he feels.

WBCs are up 0.4 for a whopping count of 2.6.  He will not get Neupogen today.  I am eternally grateful for this drug and everyone at Amgen, including Steven, who made it available and safe for patients.  When Steven started at Amgen in 1999, I was amazed at the life saving drugs they were devising.  I remember saying to him..."I hope we never need one of these medications...".  Never say never, this is from personal experience.  It was such a great company to work for with life saving drugs and top notch employees.

Then there is his HGB of 6.8...zzzzzzzzzzz.  This count makes me fall asleep it's so low.  It shows you how he has adjusted to this low of a count for a long time.  As women, we frequently walk around with a low HGB, and adjust to continue our wife, mother, sister, daughter, etc...activities.  For a 6'4" man to have this low of a count and get where he needs to go clearly shows how his body has adjusted to the situation.  He will get one unit today, that's 4 per month.  The doctor assured me it isn't too hard on his heart to walk around with that low of a count.   Giving him too many and we still have to worry about hemochromatosis, too much Fe, even though he is on Jadenu (Fe chelator).  We will now wait for the unit of blood to be ready.

The unit of O+ is here at 12:30pm, did I mention we have been here since 8:30am?  He is still typing as B+.  We have another 1 1/2 hour here and then will hopefully be able to leave before rush hour!

Day +101-Day +105

It's a week since we came to clinic and we are thrilled.  Just having an extra day back is huge for both of us.  I found a new place to wait for Steven when he is having his blood drawn.  Around the holidays, the waiting rooms were a hot bed of vermin and disease.  I don't mean what Steven has, I mean flu, colds, ebola.....sorry that was overdramatic!  There is a resource center for patients and caregivers.  It has a large variety of reading material and living room type chairs that make it a great place to wait for him.  It's quiet and not by the patient check-in and waiting areas.
Counts are still low...another shot of Neupogen and a unit of O- donor designated blood!  A nurse asked us if we were collecting the tags that say donor designated.  Ummm no, no one ever asked us that!  Yes we would love it :)  I'm glad they didn't ask us at the beginning of this process, we already park 3 cars in the driveway versus the garage.  I could have wallpapered the bathroom with all of them by now.....

Day +100

Where is the marching band?  Where is the parade?  Thursday was Day 100, the magical number, but it's status quo for us.  Steven's white cell count was too low to lift any of the restrictions.  We can't help but be disappointed.  They really put a huge emphasis on that benchmark but…it's all about the counts.  Hopefully his WBC count will be increased after receiving Neupogen.  The good news is we didn't need to go to clinic on Friday.  That is HUGE!!  No complaints but that's it for now, I have to wipe the dog down….. :)

Day +98

We will be seeing our doctor today.  He had rounds at the hospital so we saw the nurse practitioner the last two weeks.  The nurse practitioners are fabulous but there are still a lot of things they can't answer until conferring with the doctor.  I have many questions today.....have I mentioned that Thursday is Day +100?

Steven's Saturday was not great.  Luckily he feels much better today.  You never really know why he feels nauseated/exhausted, it's just part of the process.  We also have an appointment with the endocrinologist after being lectured on nutrition and diet last month.  They have assured us the increased glucose is medication related, but the guidelines are good reminders for healthy eating.  I commend COH because they really do treat the whole person, not just the disease.  I will remind the endocrinologist that Thursday is Day 100, just in case he needs to know…

Labs are back and counts are all down.  Steven will receive his first shot of Neupogen.  He knows more about it than his doctor does since he did antibody testing on it when he was at Amgen.  This drug encourages the bone marrow to produce more white blood cells.  The crazy nausea is probably due to GVHD.  His Tacrolimus and Serolimus (anti-rejection) levels are low so they don't want to decrease them further.  We will manage his symptoms and check levels next Tuesday.

The only thing that will change is we were given our doctor's blessings to go to clinic once a week.  The caveat is if Steven is uber tired at the end of the week (HGB is 8.0), we may need to return for a unit of blood.  It's good to be flexible...

Countdown to +100 Days!

It's Friday and we are waiting for clinic.  He is already scheduled for a unit of blood based on Tuesday's labs.  Next week, Thursday to be exact, is our +100 Day benchmark.  I want to ask (more like press) what might change at 100 days.  My top 2 questions are: do I still have to dip kitchenware in bleach water and do I still have to wipe the dog off every time she comes in from the outside?  I think Steven's top 2 are:  can I ditch the mask and can we go to Disneyland?  I already know the answer to the second question but it's always fun to see their faces when we ask.

HBG is 7.6, good call to order a unit of blood on Tuesday.  Steven's triglycerides are now elevated due to the meds so we get to take another medication.  It's good to have something else to think about.....  Other than that, labs are to be expected, notice I didn't say they are wonderful!  We have lowered our expectations and have become more patient with the process.  Platelets are still in the normal range, WBC's have again dropped but no one is concerned so I guess it's all good.

We are in the infusion room waiting for the unit of blood to arrive from the blood bank.  Steven will be getting another designated donor O+ unit of blood!  Thank you thank you!

Day +77-Day +90

We survived the holidays!  We were blessed to have our kids here and they were a tremendous help.  They put up our outside lights and then took them down along with our artificial tree (still no plant material allowed in the house).  Everything got packed away and put in its place.  I emphasize this because normally Steven and I do this task.  The kids really stepped it up and helped with cooking meals and taking Steven to his COH appointments.  A few things went by the wayside but nothing catastrophic.  It's interesting what becomes important when going through a major health challenge.
We also got away with only coming to clinic once during Christmas week and once during New Years week.  We were hoping that trend would stay but not the case....not yet anyway.

Both Tuesdays Steven got a unit of blood, designated donor blood from the blood drive!!  They were both O+.  He is still typing as B+ but either he has weird antibodies or the B+/B- units have antibodies.  Either way we are eternally grateful to everyone who has donated for Steven.

It's a zoo today, the Tuesday after New Years and it's raining (actual rain).  Steven's HGB is 8.1, not quite low enough for a unit of blood.  We will be back on Friday because he will need a unit of blood.  We are getting close to our +100 Day benchmark and asked the nurse practitioner what can we look forward to.  Everything is prefaced with, "well we will have to ask Dr. Nathwani.....".  I get this.  Healthcare isn't going to promise you the world and then have to back off of those promises.  They would rather give you a tidbit and build on that.  Honestly, we know things will loosen up at some point.  We have gotten this far and followed the rules, we aren't going to blow it now.

We did have one change in medication.  Steven's RBCs are still nonexistent so they have decreased one of the anti-rejection medications, Tacrolimus.  Instead of 3 tablets twice a day, he is taking 3 in the morning and 2 in the afternoon.  It doesn't seem major considering he is still on 15 medications but they are hoping this will give the donor RBC's a chance to increase.  We are pretty early in the BMT process so they don't want to decrease the anti-rejection meds too soon or too fast.