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

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.

Day +24-Happy Halloween

It was so awesome to have Steven home.  I asked him how he slept last night thinking it would be awesome without anyone interrupting him, and he said he got up every 2 hours!  Not sure why be hopefully he will retrain his body to not get up for an invisible nurse.
A good friend left several boxes of disposable towels and a baby monitor on my doorstep yesterday!  Brilliant!  I've never seen these disposable towels before and they are perfect.  Steven isn't supposed to use a towel more than once.  The baby monitor is perfect for when we aren't in the same room.
I spent a good part of the day sanitizing dishes, cooking utensils, pots and pans.  What does he want for breakfast?  Toast.
I was a little nervous maintaining his Hickman catheter today.  It could be because we weren't in a hospital with a qualified RN standing nearby and a crash cart within reach.  It actually went well...he's still breathing, that's my confirmation.
He is pretty tired.  He wasn't expecting that.  We thought we would take a short walk around the block.  We didn't have to call MediVac but he was pretty done after that.  Baby steps.
Halloween has always been our high holiday.  Our neighborhood is so crazy amazing on this day.  Last year I gave out 500 pieces of candy.  I thought of so many things he could have gone as this year:  Mr. Magoo, Mr. Clean, a genie or Heisenberg from Breaking Bad.  Steven will stay inside this year with Koda.  He is supposed to avoid crowds, large numbers of people and close spaces with people.  My neighborhood qualifies for all of the above!  Happy Halloween!

Day +23-Welcome Home Steven!

Steven went home today!!!  He said it was surreal driving home.  But how did we get to this point???

Steven said the doctors would be arriving early.  I arrived at COH with an extra suitcase.  We accumulated a few extra things.  His WBC count dropped to 2.5 but his ANC was 1.6.

His nurse thought we were leaving so I started taking cards off the wall and packing his extra clean clothes.  The endocrinologist came in and said good luck.  The nutritionist came in and said good luck.  The pharmacist went over all our medications and said good luck.  The case manager came in and said good luck.  I went over to the pharmacy at COH to get the supplies to maintain the Hickman catheter.  No doctor.  I took a load to the car.  No doctor.  We watched a Patient Education movie about PICC/Hickman lines and I had another opportunity to demonstrate flushing his Hickman with saline and heparin.

The doctor finally arrived at 11:30am with an entourage.  She does her examination, answers my questions and signs the release forms.  We are almost free!

I pulled the car around, packed up and off we went!  The next phase, home recovery, has begun.

I stopped at our pharmacy to get 15 prescriptions.  Even though I told the Case Manager our pharmacy had to order one of the prescriptions, there was a failure to communicate and one of the GVHD meds were not available.  Luckily, our pharmacy is awesome and she found this medication at another pharmacy in town.  I bought the mother of all pill organizers and we spent 1/2 hour putting pills in little boxes, but who cares, he's home!

Day +22

Steven is still slated to be released tomorrow.  He received 2 units of blood this morning.  They gave him two units so he would not need more before Tuesday, our first scheduled clinic day post release.  He walked another mile, his 10th since being released from his room.
He has really done well and is hopefully spending his last night with the second wife.  He still has 2 pumps going so they aren't quite ready to totally disconnect him.
Tomorrow's schedule is, fluid.  He may be released, possibly at noon.  It's good to be flexible.  I'll drive to COH and hope for the best.

Day +21

Since Steven is slated to come home on Friday, I will need to prepare.  I'm having the carpets cleaned this afternoon.  COH gives you guidelines on what needs to get done before the BMT patient comes home...vacuum, dust everything including blinds, clean bathrooms, kitchen, clean carpets, etc...  The only reason I went back to work was to justify getting a housekeeper.  Just kidding, but I do love having one.  I despise cleaning and equate it to putting bamboo under my fingernails.  COH actually recommends you have your house professionally cleaned.  The patient is never supposed to clean or pick up pet waste, or...sounds like business as usual :)

I broke the latch on my front door before leaving for work.  Of course.  I have time for this.  It's the latch that your thumb pushes down on in order to open the door.  Double doors look so nice until you need to buy hardware times 2.  Timing is everything.

The carpet cleaners were at the house early and finished my house in 1 1/2 hours.  When they were done, I went up to Simi Valley to run errands.  I needed to get a thermometer for the frig, meat thermometer,  and new hardware for the doors.  One of my good friends texted me and asked if she could do anything to help me prepare for Steven's arrival.  No I'm fine, I have to blah, blah, blah and get new hardware for the front door since I broke one of the latches this morning.  She offered her husband's assistance and voila, he came over and changed them out for me!  I am so grateful and they look marvelous!  Thank you!


Steven on the other hand, had a great day.  He walked another mile and did 7 miles on a recumbent bike.  His WBC count is at 4.0!  They are continuing to ween him off the IV's and substitute pills.  He took 8 pills this morning!
One of my BFF's brought me bleach, cutting boards and sponges.  So awesome!  Thank you :)  She also offered to make a sign that I want to put on the garage doors that says, Welcome Home Steven!

Day +20

We are getting ready to blow this popsicle stand!  Not only is the bag of TPN gone but they just weened Steven off his Tacrolimus IV and was switched to pill form.  They were talking about letting us leave Saturday but now they are talking about Friday.  The whole 4-6 weeks seemed like an eternity on October 3.
The nutritionist talked to us when I got here.  It's worse than when you have a newborn.  All cutting boards, cooking surfaces, utensils, sponges, etc.. have to be sanitized in bleach water.  No honey, no uncooked meats (not a problem), no deli meats that aren't cooked, no bruised or damaged fruits/veggies, no leftovers after 48 hours, he has to eat cooked foods within 2 hours of them being cooked...  it goes on and on.  I have a little light reading to do tonight.  I will also be going grocery shopping for the first time since September.  Thanks to everyone who so graciously provided me food so I didn't have to survive on Ensure.  I literarily had zero time to cook.  I am grateful for all the meals, snacks, and beverages! :)  Thank you!
Steven's WBC count is now 2.4.  For some reason they didn't calculate his ANC today.  Platelets dropped to 77,000 from 89,000 yesterday which they said might happen.
Steven took the bait and went to the group recreational therapy today.  Yes, the one I envisioned being run by Nurse Ratchet with perfect order.  It's purpose is to keep the patient's minds sharp.  They played a card game called Corner Eights and Dominos.  Steven's mantra is compete intensely and win, even against other BMT patients.  They never saw it coming...
Steven did another mile and earned another foot.  He has had some swelling in his feet due to all the IV fluids.  That should go away as the IV's are discontinued.  He has taken advantage of walking when he isn't tethered to the "second wife".

Koda and cats...

Our neighbor has graciously been taking Koda for a walk or 2 every day.  We are thrilled and grateful!
Thank you to everyone who has offered to help us with Koda.
Our neighbor doesn't have a dog, she has cats…I love this picture of her kitty when Koda comes to visit.  This says it all….

Day +16, +17, +18, & +19

I have a little catching up to do!
Friday,  Steven's WBC count stabilized at 1.4 but his platelets started to increase to 25,000.  The doctor said it isn't unusual for counts to sit for awhile...they aren't concerned.  Steven is starting to eat a little more.  Apparently our WBC do more than fight infection.  The RN said that when his WBC count increases he will be able to taste more foods and he won't be as nauseated.

Saturday, WBC's still at 1.4 but platelets are now at 38,000.  Our doctor said the platelets will need to be at least 50,000 and ANC >1.0 before discharge.  His WBC and platelet count is higher than when we were hiking in Wildwood, before being admitted, with the dog, plague, pollen, unleashed pitbulls and anything else in a natural green space.

Sunday, WBC still at 1.4 but platelets are now at 50,000 and ANC is 1.0!!  While I'm looking for his luggage so we can leave, the doctor reminds us that the counts can drop at any time and increase again.  Because of this we are looking at returning to Duarte 2X/week after discharge.
Steven enjoyed the company of a repeat visitor.

Monday, so the WBC's woke up and Steven's count is 1.8 with an ANC of 1.0.  And the platelets are happy campers at 89,000.  He had to have a unit of RBC's this morning.  His RBC count has fluctuated quite a bit.  After discharge, he will most likely have to have RBC's which is why the Hickman will be left in.  Steven is getting close to his target numbers to be discharged.  It's crazy because the time here has gone quickly.  It is possible he will be discharged in the next week.
Steven enjoyed the company of another repeat visitor and platelet donor.  Won't you all be happy when you aren't coming to COH to donate!!

And speaking of the Hickman, I had a tutorial with Steven's RN on the care of his catheter.  It's a piece of cake... don't push a bolus of air in his line and you will be fine.  I'm good with that! Basically I will be pushing heparin/saline mixture in each port once a day to keep the lines open.  The sterile dressing will get changed once per week.

I'm into long term planning and requested the nutritionist come tomorrow to give me the ins and outs on cooking for someone after BMT.  There are a lot of rules.  One of the nurses thought cutting boards had to be cleaned with bleach.  I'm not sure I own bleach...  More on that after my appointment tomorrow.

Day +15

No blood products today.  He still has several bags hanging although they are weening him off of some of them like the TPN.  He ate a little more today even though he always feels "on the edge" of nausea.
We walked a mile together and earned another "foot".  No holding hands yet on the midnight strolls.  I'm afraid we always have a chaperone….the "second wife" better known as the IV pole and all of its hardware.

Physical therapy invited Steven to a group session.  It's more of the play games together to keep their minds sharp versus physical activity.  I envision the patients in One Flew Over the Cuckoo's Nest playing cards and one of them asking for his cigarettes and mayhem breaking loose….  The PT agrees that Steven is keeping his mind sharp by checking his work emails and participating in teleconferences, but he had to invite him anyway! :).

Day +14 - Out of the room!

So I get a text this morning, and I have to guess Steven's WBC count.  So I aim high, because I'm not a morning person, and accidentally guess correctly.  His WBC count is now 1.0!!  While we were doing the happy dance and Steven was putting his running shoes on, the doctor tells us the absolute neutrophil count (ANC) has to be 1.0 not just the WBC count.  There are 5 major types of White Blood Cells:  neutrophils, lymphocytes, eosinophils, monocytes, and basophils.
ANC is actually a calculation, not a direct count.  It basically assesses a patient's risk of developing nosocomial infections (hospital acquired infections) or opportunistic infections (like the dirt on our dog!).  Steven's ANC was 0.5.  The doctor thought by Thursday or Friday he could leave the room.

While we were sulking, the physical therapist comes in.  And he's like, "lets take a walk, the ANC will be 1.0 within 24 hrs.", and with that, Steven walks out of the room for the first time since October 3rd.
He had so much fun out in the real world (can't leave the 6th floor) that he walks a mile.  A mile at COH equals 8 laps.  For every mile you walk, you get a "foot" to put on a key chain.  This is how they track how much you are exercising versus watching the Cubs lose.  Another milestone and another day closer to leaving!

COH has so many programs for the patients.  There is even one for me, Caregiver's Companion Program.  When we first found out Steven had MDS, we signed up for everything.  None of this is about me, but the caregiver role is huge.  The first 100 days are critical, he can't be left alone.  I took a full time job in June.  His chances of having an issue are the greatest in the first 100 days.  Plus he will have beaucoup restrictions on the foods he eats, no leftovers, has to eat prepared food within an hour, etc…  I work full time now.  He will also need to go back to COH twice a week for check ups.  Did I mention I work full time now? :)

I will actually be paired with a seasoned caregiver who will help resolve any issues and answer any questions.  It's like having my own personal support group.  This program is part of Be The Match which is the National Marrow Donor Program based in Minneapolis, MN.  These are the people who found Steven's bone marrow match.  I will receive a call once a week after Steven comes home until his 100 days are over.

Day +13

Steven received a unit of RBC's this morning.  Nothing like a bag of oxygen carrying cells to start your day.  His WBC count has climbed to 0.5!  Now we are talking!  He ate an English muffin for breakfast.
Hoping to lose the TPN soon.

Steven actually had a busy morning.  The physical therapist came in and challenged Steven with walking in place for 2 minutes, balancing on one foot, and bending over.  I'm kidding, it wasn't challenging but at least it was movement…as much movement you can do in one room.
Lunch didn't go so well.  He ordered a nutritional shake one of the nurses recommended.  Let's just say after lunch they increased his dose of anti-nausea medications.

A recreational therapist came and played a card game with Steven.  I'm not sure why I busted my rump on a biology and chemistry degree when I could have been a recreational therapist.  I didn't know there was such a thing.  Steven said the game was similar to UNO.  My idea of being a recreational therapist is playing racquetball in the patients room….

We have been married for 36 years and I just learned something about my husband, he has a perfectly shaped head.  You don't know that until they shave their head!  In the whole scheme of things hair just isn't that important.  It's a small price to pay for a cure.  Steven said he is auditioning for a "little brussels sprout" from the movie Major Payne.  I hope all the non-Scouters get the humor in this because we had a big laugh over it.  You'll have to Google it because I'm not technological enough to include the link.

Steven had a visitor today who would understand this reference.  Glad Steven still has his sense of humor!  That is one of the things that make him so great and something MDS can't take away from him.

Day +12 - Bald is Beautiful

Steven received a unit of A+ designated donor platelets this morning!  Thank you!!!  And his WBC's are up to 0.3.  It will be interesting to see if the WBC count rises exponentially.  If he increases 0.1 every day, he will get to break out of jail in a week and walk the halls.  Hopefully they will increase faster than that.

He actually ate a little more than a cracker today: jello and a cracker.  Yesterday he needed Compazine after eating the cracker because it made him nauseated.  I'm always sorry when I go on the internet and look at the side effects of the medications he is taking.  Even though it makes him extremely tired, he tolerates it well.  Today, he wasn't nauseated after eating…every day is a little better.  The doctors have been so spot on with all the symptoms including….hair loss.

The last couple of days Steven had a few hairs on his pillow, no biggie.  He said his hair didn't feel like his and it felt like straw.  Today there were many more on his pillow and the doctor said he should consider shaving it off.  So yes you guessed it, a woman came in and shaved his head.  We had been preparing for this, but he always had so much hair that he would have to get it thinned when he went to get it cut.  We were thinking a few would just fall out and he would still have more hair than many men his age.  But then I envisioned Lon Chaney in his role of Phantom of the Opera where he had this super thin hair where you could see his scalp.  Not wanting to be the Phantom, Steven embraced this aspect of chemotherapy and took control over his hair loss.  The loss was made more palatable since his WBC's are going up indicating engraftment.  The hair loss is minor compared to other side effects of BMT.

Anticipating this event, I bought him a Bears baseball hat and a Bears knit cap.  We will have a burning party when he is comfortable not wearing these anymore.  When we checked into the room on 10/3, we   asked what is now a funny question, is there a hair dryer in the room or do we need to bring one from home???

Bald is Beautiful as we continue the fight and prepare ourselves for the next challenge.  We couldn't do this without everyone's love and support.  Thank you!

Day +11

I was so excited to come in today and see that Steven's WBC went up to 0.2!  Don't pop the champagne yet.  Normal range for WBC's is 3.5-10.5 billion cells/liter or 3,500-10,500 cells/mcL.  With only 200 cells/mcL floating around, I see why the doctor wasn't impressed.  But this is the first sign of engraftment so for us, it's reason to celebrate.

When the new stem cells decide to unpack their bags, the WBC count will rise first, then RBC's and then platelets.  I love how they post the midnight blood draw on the white board every day.

We had a very special visitor today, our Pastor from our church.  Steven received Communion and the sacrament Anointing of the Sick.  Anointing of the Sick is a gift of the Holy Spirit.  Steven misses our Church Family and knows there are many people praying for his recovery.

I'm glad the Bears loss didn't raise his blood pressure so much that they would make us turn off the TV.
It was football…all…day...

Commenting on the blog

Hi everyone! It's Ashley.  My mom mentioned to me that a number of people have wanted to comment on the blog but had issues with that, so I thought I'd write a short post detailing what needs to be done.

Unfortunately, blogger doesn't allow you to post a comment anonymously.  What you would need to do is sign into your google account first (gmail), then go to the blog and you'll be able to comment.  If you don't have a gmail account, but would like one, it's very easy to set one up.  Follow this link: https://accounts.google.com/signup
Fill out the basic required information, choose a username and password, and you're all set! It's a free email service, and they won't charge you anything or ask for any credit card info.

Hope this helps!  Sending love from MD to everyone who's been donating blood and platelets at COH and in their communities, cooking for my mom, visiting my Dad, helping with Koda, organizing the blood drive, and sending their well wishes.  We so appreciate all of you, and I can't thank you enough for your support.

Day +10

Steven received AB designated donor platelets this morning!  Thank you!  We know they are donor directed when they have the manilla tag on them.

Our AB friend is the universal recipient versus O who is the universal donor.  The AB blood type comprises less than 4% of the population.  We have some very rare friends!  Platelets are not type specific meaning you can receive anyone's platelets no matter their blood type.

Since the new stem cells haven't kicked in yet, Steven's blood type is still B.  When the donor stem cells start setting up shop, he will most likely be AB somewhere in the transition to becoming A.  Basically he is a blood bank nightmare and they are only giving him O blood.

Three of our good friends donated platelets this morning and he had two visitors.  Thank you!
I am in awe at the people who have driven to Duarte to donate for Steven.  You have to love the 210.  I haven't made a trip here yet and not seen an accident or an accident waiting to happen.  I'm starting to see the same cars during the week, we wave at each other...the Jersey kind of wave.  You really have to be on your "A" game driving here.  At any point, the traffic comes to a screeching halt, for no reason.  I don't know if I want to watch the move LA Story with Steve Martin or if I want to see if there are flights to Duarte.

One of the programs they have at COH is called Change of Scenery.  They understand that it's hard to be sequestered in one room waiting for cells to engraft.  There is a picture in each room that they change for you every two weeks.  They peel the picture off the white board and put up a new one of your choosing.  This is the excitement we have been reduced to...

Can't wait for his WBC's to climb to 1000, then we get to leave the room and walk the hall!  Any day now.

Day +9

No blood products today.  We had another gracious visitor after she donated platelets!  She was the bearer of some Wii games also :)  Thank you to those who have loaned us games.  I hope in a day or two Steven will be up to playing again.  He is a little better every day.

My good friend also told me that when you donate, they give you a tracking number.  You can actually see if Steven gets your blood products or if someone else does.  Modern technological advances!  

We really appreciate when you tell us you donated here at COH.  Before Steven was admitted, we asked the donor center to let us know who will be donating for him so we can send them a thank you....  Rest assured your personal information isn't going to be divulged to anyone including us.  Due to HIPAA regulations, we are not privy to that information, even though you are donating for Steven.  But interestingly if you donate at the blood drive on 12/13 and we are standing there, we will know that you donated.  That would be a small snafu in HIPAA's regulations.  I'll apologize for the generic thank you you will be receiving but the good news is, the donor center will mail them all out for us.  I've heard nothing but good things about everyone's experience at the donor center!

Day +8

Steven received platelets this morning along with a yummy TPN chaser.  He was more alert and talkative than yesterday but who isn't when they are watching Thursday night football!  For the first time in 4 days he ordered food, ginger-ale and crackers.  The crackers were still sitting on the table when I left, maybe tomorrow.

He had a great dream last night about a fire truck driven by a demonic woman (I'm sure that was me), a car with kids in the back seat, something about his cell phone melting into a rainbow of colors......  I want whatever he is getting in his IV.  WOW!

We had another wonderful visitor who donated platelets and then came over to say hello.  We are seriously amazed at the gracious outpouring of blood/platelet donors, cards, dog walkers, gifts, food, and prayers from our neighbors and friends.  We are speechless at the generosity and appreciate all of you!
This is like the movie, It's A Wonderful Life, except without the table of money at the end!   :)
Our table is full of other wonderful things.

And lastly, I want to thank the person who tried to buy over $1000 worth of electrical equipment on line using our credit card.  Thank you for giving us something else to deal with.  Any ninny knows I totally rewired the house yesterday…maybe you could have gotten away with it if you had bought $1000 worth of plumbing supplies.  Get your own credit card.  Thank you to Chase who denied this thief of his purchase.

Day +7

Steven received O+ blood this morning from a designated donor!  Thank you!

He continues to get TPN.  They have told us it is perfectly normal for patient to stop eating at some point.

Steven had a visitor today, our good friend from my Small Church Group bearing cards/gifts.  She came to donate platelets and brought a gift from our parish friends, a Prayer Shawl.  There is a group of women that make these beautiful Shawls for those who need extra prayers!  It was blessed by our Monsignor and also by my Church Group.  It is a very meaningful, powerful gift of love.

This picture doesn't do it justice.  It is burgundy, white and several shades of blue.  Magnificent.  He loves it-thank you, thank you!

I feel like we turned a small corner.  He was a little more awake and we actually played 2 games of Yahtzee.  He isn't up playing Wii yet but I know he will be soon.  The doctors/nurses all say we are right on schedule.

Day +6

Platelets are still low so Steven received a unit this morning.  Still getting Benadryl because of one hive when we were getting platelets at our local hospital.  If you indicate you have had a reaction or an allergy to anything, be prepared to have the Scarlet Letter placed on your forehead.

Years ago, Steven had hives after taking Tylenol Cold & Flu, so naturally when they ask if you are allergic to anything, he mentions that.  We talked to so many people (educated professionals)  about what could have caused the reaction and decided it was an inert ingredient.  So jettison to City of Hope.

Are you allergic to Tylenol?  No, I had a reaction to Tylenol Cold & Flu.  How do you know you aren't allergic to Tylenol?  Because I take Tylenol all the time.  But you had a reaction to Tylenol Cold & Flu...  We need to talk to the pharmacist...  We can't override the computer program...
After all the back and forth, he became the proud owner of a red Allergy wrist band for a medication that they will not be giving him nor one that is even made anymore.  Better safe than sorry...

Since this is the third day Steven has not eaten, he will start getting TPN, Total Parenteral Nutrition.  I love reading about all the possible side effects because he has all of them already!!!

Hmmm, doesn't look like something we would have a glass of wine with.  I associate this with the elderly on their death bed, neither of which he is.  Hopefully he will feel better soon so he can eat.  I think today was a little better :)  Steven also had a visitor which is awesome!  

                          

Day +5

It's hard to believe Steven has been at COH for 9 days...not that I'm counting.  We are slowly working into a routine.  I went to work today, came home, let the dog out, and drove to Duarte.

I'm afraid to report it was another miserable day for Steven.  The evil effects of chemotherapy just won't go away fast enough.  The good news is, none of this is unexpected.  He is totally wiped out and slept most of the day... which is a good thing.  It's all part of the process.

Steven's platelet count dropped below the magic number and he received donor designated platelets this morning.  If you donated in the last 5 days, they were your platelets!  Thank you! :)

The nurses are preparing us for a fever spike.  Between his low WBC's and stem cells that are setting up shop, he will most likely get a fever.  Since the threat of an infection is always possible, they will draw blood cultures and give him prophylactic antibiotics even though the fever is an expected occurrence.

The next shift has started and it's time to drive home.

Day +4

My mother said there would be days like this…  Yesterday evening was very rough.  No one should have to go through this.  Today isn't much better but the doctor said he would start to feel better in a couple of days and that the first 1-2 weeks are the worse.  It's hard to see someone you love go through this but I believe in the process and know it will get better every day.  Thank you for everyone's thoughts and prayers!  And thank you for driving to Duarte to donate platelets/blood!  He will most likely be receiving platelets tomorrow, maybe they will be yours! :)

Steven hasn't eaten today.  More anti nausea and Lomodium medications.  Since day 1, everything gets measured, in and out or his body, and I mean EVERYTHING.  They are constantly checking kidney function because of the toxicity of the chemo and GVHD drugs.

The good news is the Bears won by 1.  The day could have been worse. :)  What would we do without DirecTV and Sunday Ticket??

When he wants to take a shower, he has to be untethered from his Hickman line.  That gets taped up with a bag and secured with tape since it can not get wet.  The PCA comes in and changes all the bedding while the patient is showering.  You can bounce a quarter off the bed.  I think they send the PCA's to boot camp so they can learn to make perfect corners.

And speaking of the Hickman line, I will learn to "maintain" it when Steven goes home.  Most BMT patients get a picc line (peripherally inserted central catheter) placed at the elbow.  It is inserted into a vein via X-ray.  Steven needed a Hickman (named after it's inventor) inserted because he had to be plasmapheresed, it is larger.  It is also inserted into a vein but it exits his chest wall and is stitched in place.  There is a little more risk of infection with a Hickman.  Both are used for blood draws, blood products and chemotherapy/IV fluids.  I will have to attend a class to learn how to flush the line with heparin and change the dressing, which is more involved than I ever thought changing a dressing would be.  I'll have to demonstrate in order to pass muster and get a hall pass to leave.  I'm up to the challenge and won't think about how close this is to his heart!

Day +3

I returned home late last night to find a shrine reminiscent of when Princess Diana died.  Well not quite, but there were cards, food/drink, flowers, and an adorable stuffed German man in lederhosen!  I felt very loved and I appreciate all of you.  Who hung the German man on my door?  :)  Thank you to all!

We had another visitor today, another gracious platelet donor!  It's so nice to see someone from home visiting.  It's 100+ degrees in Duarte today with crazy traffic so I know it is an act of love and we are grateful.  Traffic is bad because President Obama is coming, Dodgers have a playoff game, and there is a soccer game between Mexico and USA.  Timing is everything!

It was good to catch up on laundry this morning, including Steven's.  We bought one of those pop up hampers for his room, like the one we all bought our kids when they went to college.  He is allowed to wear his own clothes.  He can wear a hospital gown if he wants but most of the BMT patients wear their own clothes.  I'm glad there weren't special instructions (and surprised) for doing his laundry.  Since his immune system is brand new, I wouldn't have been surprised if they made me wash in Dreft.

COH is very good at slowly giving important information and not overwhelming the patient or caregiver all at once.  That does cause me a little frustration because I like to see all the cards on the table and then come up with a plan.  It doesn't work that way for BMT, mainly because there are so many things to know and so many moving parts.

One of my favorite conversations with our COH doctor was, "Do you have pets?".  Yes.  We have a dog.  Silence.  So is this going to be a problem?  Silence.  "Is she an inside dog?".  Yes, she is a husky/golden retriever mix.  "Does she sleep in your bedroom?".  Actually she sleeps with us on our bed.  At this point I thought I was going to have to put her to sleep by the look on everyone's face.  She is a big, rugged, goof of a dog.  I started thinking of ways to "save her" and thought I would have to drive her to Texas in the middle of the night to stay with our son until we would be allowed to have her in the house again.  Good thing we aren't going to have to do that!

Because Steven's immune system is so new, our beautiful pup may not enter our bedroom.  She will be banned from that room but luckily not banned from this earth!  I will need to wipe her down when she comes inside and wipe her frequently.  Steven will need to wash his hands after touching her.  The problem is not the dog but soil and dirt.  Simple organisms we are in contact with daily become a huge problem to someone who is immunocompromised.  My housekeeping score card will be the subject of another day.  

Day +2-P.M.

4:00pm-It's a constant changing of the bags-Tacrolimus (immunosuppressive drug), Sodium Chloride, Acyclovir (anti-viral), platelets, red blood cells, etc, etc, etc...
Smells definitely trigger the nausea, but right now it is under control.

Played Wii bowling...until I won.  Then switched to archery...until I won.  Then switched to light sabers and played several games of which I lost every single one.  I highly recommend if you find yourself sequestered for any length of time in one room to bring a Wii.  We've had one for years and hardly played it, in fact we only have one game!  My good friend is offering to bring a few others so we don't look so pathetic playing the same game.  Her daughter said we could borrow them until Steven was well enough to drive and buy his own.

8:00pm-A huge shout out to the Marriott Courtyard in Monrovia.  They have special rates for City of Hope families that include breakfast.  They also offer a shuttle service to and from COH free of charge.  It was a great hotel and I appreciated the convenience and good night sleep.  Maybe next time I'll sleep in the chair....not!

Steven is incredibly tired.  They take his vitals every 4 hours around the clock so he doesn't get a good nights sleep.  His Vitamin D is low and he was given a supplement....well no kidding.  That's what happens when you don't see the sun for any length of time!

Lunch time

Noon-If you come to visit, we can tell you how crowded the 210 is from his room.  It's a great view on the 6th floor.

When he is allowed to leave his room, we can sit in the lobby where the view is gorgeous.

      

Time for a nap, lunch and maybe a game of Wii bowling.