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.