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.

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.

No Disneyland for us...

10/6/15-Right before our world was turned upside down, I took Steven to Disneyland for his 60th Birthday.  I wanted to do a surprise party but he isn't good about letting me know when his business trips are.  When I told him I wanted to do a party, he was all for it but we were going to wait until the kids were home for the summer and could be there too.  That obviously didn't happen because you would have been there!  To celebrate such an awesome event, we went to Disneyland and stayed at the Grand Californian.

Ashley and Erik bought us park hopper passes for Christmas.  It was glorious!  Disney is such a class act. Once they found out we were celebrating his 60th, it was red carpet all the way.  Steven thought it would be a great idea to get season passes.  I don't want you to think I am a pessimist.  I consider myself a realist and with a pending diagnosis, I didn't think that would be a good idea.  He insisted and not wanting to ruin his fun, we bought season passes.  And you guessed it, we never used them again.

After he was diagnosed, his hematologist said no Disney for you!  As disappointing as that was, it made perfect sense for us to not go in light of his immunocompromised system and all the great measles carriers out there!  I promise not to get on my soapbox on immunizations.  You know what I think.....  Do you know he will have to repeat all his childhood immunizations in a year?  That's a long time to not go to Disneyland when you live in southern California.

Our 36th Anniversary

Happy Anniversary Steven!!  We won't forget our 36th anniversary!  Steven looks good; the doctor said he looks like a visitor instead of the patient.  He has finished his Keflex (preventive antibiotic after Hickman placement) and Allopurinol (decreases uric acid from chemo).  The chemo is done but now they are hanging bags of steroids and the all important anti-nausea bag of goodies.
Ashley's post was very complete so I don't have much to add.  We drove home at 9pm, got gas (I'll be putting on 120 miles/day-cha ching!), and Ashley is making us dinner...at 11:13pm.  We are pretending we are European and eating late.  She is going to make dinners and freeze them for me.  No time to cook right now.  I was going to tell you how I came up with the title but it's almost time for this caregiver to eat and go to bed.  I will explain tomorrow.

An interesting anniversary

Hey everyone!  This is Ashley checking in.  My mom worked all day and is now stuck in that beautiful LA traffic, so thought I'd fill you all in on my Dad's day so far.

First of all, I wanted to wish my amazing parents a happy anniversary.  I'm sure this isn't exactly what they had in mind for it, but in sickness and in health, right?  After taking care of some things around the house (by things around the house, I mean picking up what felt like 5 months worth of dog poop in the backyard) I drove down to COH to hang out.  Dad had a physical therapist come in who's going to work with him while he's in the hospital to keep up his muscle tone and balance, and make sure that he doesn't sit on his butt watching tv all day every day.  They're happy with his baseline fitness level, except for balance.  I'm 99% sure he's where I get my coordination from I guess.  I brought our Wii from home and the staff at COH was awesome sending someone from tech support out to hook it all up to his tv, so we had fun playing Wii sports.  Well, I had fun playing every game on there except boxing.  My Dad KO'd me in 10 seconds every time, not even joking.  I wish I could say I was letting him win...

I then went to donate platelets for him at 12:30.  It was a really easy process.  You fill out some paperwork, and if you're donating for my Dad you put his full name- Steven J. Swanson, and his birthdate- 5/12/55.  I went and sat down on this bed with all these heated blankets and they first test your blood to make sure you have sufficient platelet, hemoglobin, and iron levels to donate.  After that, they put 1 needle in your arm that's attached to 3 different tubes.  Your blood drains into 1 tube that goes down into a centrifuge, while the second tube delivers saline and heparin, an anti-coagulant (this makes sure your blood doesn't clot in the machine).  The centrifuge then separates the platelets from the rest of the blood cells, which are then transferred back into your arm via the third tube.  It's crazy that they just need 1 needle in 1 arm now, as opposed to having a needle in each arm like they used to do.  It took about 2 hours from start to finish, and it was honestly pretty painless! Given that my Dad's platelet levels are about 20,000, and normal is between 150,000-450,000, it's probably good I got that done!  Thank you so much to those of you that have donated platelets already.  That's amazingly thoughtful of you, and we truly appreciate it!  When my Dad gets a platelet transfusion, his bag will have a yellow sticker that says "Directed Donor," and we'll be reminded of your generosity.

Now we're just hanging out watching the Seahawks-Lions game, marveling about how it must be nice to have a QB that doesn't throw ints every 5 minutes.  Thank you for all your well wishes, thoughts, and prayers.  Everything is much appreciated.