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

Day +31, +32, +33, +34, & +35

It's a month post transplant.  A good friend commemorated this day, I would not have remembered!  In general, time is going quickly.  There is a lot to do, all inside the house.  Lots of cleaning and laundry (can't wear the same thing twice and needs to use a new towel every day).  I'm relearning how to cook for a young immune system.  I feel bad because Steven is nauseated every day 24/7 even though he is on several anti-nausea medications.

We went to the cattle call…I mean, clinic on Tuesday and his WBC and platelet counts are normal!  But as anticipated, his RBC count has fallen again.  They told us he would need more platelets while at COH and more red blood cell units after we were home.  So right.  He may need a unit when we go to clinic again on Friday.  There is also this tussle between the Swede B+ and the German A+ blood types.  The German will win but in the meantime there may be hemolysis resulting in one tired man!  The stairs are not kind to this dropping RBC count as well.  The blood drive at Holy Cross Church on December 13th (8am-2pm) is coming at a really good time!!  Thank you to everyone who has signed up!

We received a call today regarding Steven's glucose.  It's been on the high side largely due to the medication.  We need to see the endocrinologist next week.

Thank you to my "man sitter"!  It's good to go to work, for me and for Steven :)  Reinforcements are coming soon, the kids for Thanksgiving then my sister from Illinois.  We will be at 100 days before you know it :)

Day +28, +29, +30

We are at our second clinic post discharge at COH.  I would describe this as a cattle call but if you are less direct than I you might call this a fine tuned machine.  There are a gazillion people that come through here for clinic.  You have to stand in line to register (moo), sit in the Main Medical waiting room until they call you name (moo), go to the laboratory to have your blood drawn (moo), come back to the waiting room to pick up your caregiver (moo) and find your way to the clinic, of which there are 4 (moo).

I'm hearing a woman next to me talk to someone about her husband who also had a bone marrow transplant and is at Day +85.  She said he may have to have surgery because he may have a fungal infection in his lungs.  Reminds me I need to dust today...

Because the majority of people who are sitting here and in clinic, are immunocompromised, if you cough or even try to stifle a cough, you will get 106 (random number) dirty looks.  There is a box of masks at every turn and you better pick one up so they don't light the torches and run you back out to the parking lot.  The most common things in day to day life now have become a hazard and potential life threatening substance.  I'm not talking about my sarcasm, I'm talking about dust and dirt.

I'm still waiting for Steven to emerge from the laboratory.  I have to laugh because once they see he has a Hickman catheter, the lab personnel can not draw from this line.  They have to get a nurse or doctor to do it.  On Tuesday, he had to go to the main hospital and have a paramedic do it.  Why don't we just start out there since we know he has one?  No clue.  It sure is a life saver to have it, maybe I should say a vein saver.

Steven is done with his blood draw.  Apparently, there is a separate blood drawing area, VAD or Vascular Access Device, for patients with a Hickman or PICC line.  He should of been able to go there on Tuesday but someone was having an "event" and they weren't letting anyone else go there.  His blood was drawn by an RN who had a BMT in 2000.  She told Steven it must be a record to be let out one day short of 4 weeks at COH and that he looks farther along than Day 30.  He really is doing well but I notice the differences....

Top 10 Things about City of Hope Bone Marrow Transplant

#10-Your lucky if you come from a large family, you will most likely know your donor, find a donor faster and have a quicker recovery!

#9-Watch out for the first chemotherapy, it's a doozie.

#8-Take your own Wii!!

#7-No eating or drinking in patient's rooms, lobbies, or at the hospital so plan on eating dinner at 10pm, European style.

#6-Plan on losing 5-10 pounds..I'm talking about the caregiver.  The main parking lot isn't anywhere near the hospital.

#5-They are correct when they say the first two weeks after the transplant will be the worse.  Prepare yourself.

#4-When they say you may experience some "GI symptoms", what they mean is that when you see the flash, duck and cover!

#3-All of the nurses are amazing, qualified and fantastic!!

#2-You will drive 123.2 round trip miles a day times 28 days for a grand total of 3449.6 miles...minimum.  Buy stock now in the gasoline companies.

#1-Stem cells are the gift of life for MDS patients-consider registering at Be The Match.

Day +25, +26 and +27

We spent the weekend learning limits...  Even though his counts continue to go up, he is extremely tired and has low stamina.  We didn't really expect that considering his RBC count is close to normal.  Plus, you think you are exercising in the room at COH and you are earning the "feet" after every mile, but you really aren't exercising!  They commented before we were discharged that some patients aren't able to climb stairs for 2 months...hell no!  We were prepared for that but Steven goes upstairs to sleep at night.

Eating is an adventure.  Because there are so many restrictions on food preparation and consumption, I feel like I've never cooked before.  I'm questioning how I handled meat already in the freezer and tossed most of the open containers in the refrigerator.  I asked my better half what he had a taste for.  He said chili.  That would of been the last thing I would have thought to make for him but ok, I can do that and follow the rules.  Need I tell you he had nausea that night, and he is still on nausea medication!  Monday he only had peanut butter on raisin bread, cottage cheese and grapes.

Today, Tuesday, is our first clinic at COH.  He had labs drawn in the morning and then a 15 minute appointment with our physician.  His counts are starting to look great but you wouldn't know it as tired as he gets.  The doctor is not concerned about his lack of stamina and said the nausea could be GVHD.  We will see him again on Friday.  Initially, we will be going twice a week to clinic and they had us scheduled through the first week of December.

Steven is taking part in a study on CMV, cytomegalovirus, post transplant.  It's a phase II study to test the effects of a vaccine to keep CMV from erupting post transplant.  Many of us have been exposed to CMV which causes flu like symptoms.  The virus sits latent and sometimes rears it's ugly head on immunocompromised patients causing complications.  The concerning complication is that it targets certain cells in the bone marrow.  It's a blind study meaning we don't know if Steven is getting the vaccine or a placebo.

When we were done with clinic, they started "making" the vaccine.  That took almost 2 hours.  They gave us a pager so we would know when to go back when the vaccine was ready.  The nurse gave Steven Tylenol and had to wait 15 minutes before administrating the vaccine, which was one shot in the arm.  After 30 minutes, they will come in and do vitals.  Assuming he doesn't break out in rash or stop breathing (come on, I'm kidding), we will get to go home.