Day + 36

"Patience is a Virtue"........

These words I heard over and over again growing up from my Mother!  I am so very grateful to her for teaching me how in the heat of a moment or while facing difficulty to take a deep breath! 

Some of Bill's numbers today took another slight dip!  In today's world of immediate gratification,  I am so reminded of  her reassuring voice " take a deep breath and remember all in God's time not ours"!

Thanks mom, for your wonderful example of a strong woman despite being in the midst of dealing with great challenges!

Day +34

We have had a couple of nice relaxing days at home.  Bill got on the treadmill for a few minutes today.
Molly fixed a nice dinner tonight in celebration of our 24th Anniversary!  Amazing how fast 24 years can go!!!!

Day +29

Northwestern Visit...............

Platelets up to 49,000    White up to 2.9   Red holding at 10.7

Bill is inching his way toward normal......... 

Next blood check in 7 days     Next Doctor visit in 14 days    Next Biopsy in about 30 days

Day +27

Happy Monday...........

White count up a little more which means Bill's immune system is coming back.  Red count stayed basically the same down 1/10 of a percent and his platelets went up a few thousand. 

So all in all still headed in the right direction.  Next check will be on Wednesday with Dr. Mehta at Northwestern!

Day +25

Dream day…

Bill woke up feeling pretty great!  Molly and I are enjoying the gift Bill gave me for Mothers Day.
Lunch at the Walnut Room, Jersey Boys and dessert at Grahams 318!     How spoiled and truly blessed I am to have such an amazing and thoughtful husband!

Day +24

Bit by Bit.............

White count up a bit
Red    count up a bit
Platelets down a bit  (but not low enough for a transfusion)

As my friend Betty reminds me....... Slow and steady wins the race!!!!!  Things are going in the right direction.  Platelets we expected to be down because they take the longest to kick back into gear. 

So next check will be on Monday and then Wednesday we will go back to Northwestern for a more comprehensive check! 

Thanks for keeping those positive thoughts coming!!!!!

Hope you all have a wonderful, relaxing and blessed weekend!!!!!!!

Day +22

Went for more blood tests................  I think this is going to be the new story of our lives.

Everything is basically holding steady!  We would like to see a continual up swing but know that may take some time!  We did get a chance to visit today with Bill's original Chemo nurses, Ted, Lisa, Shelly and Janet.  For many weeks we were seeing them each and every week, so it was nice to catch up with them.

Will keep you posted on Friday's blood results!!

Day +20

First Out-Patient Checkup after Transplant................

Went into the city today for the first out patient followup after transplant.  Labs were interesting....Hemoglobin is the highest it has ever been since beginning this journey.  11.0!!!!!!!!!
White count  is 2.0, platelets were at 12.  Bill then saw Dr. Mehta and everything looks good except platelets.  Those are always the slowest to start functioning again.  We then went for a followup with the Allergist.  They have now labeled him as allergic to 5 different drugs although they really don't know which drug he reacted to.  After that we went to the Blood Center so he could get his transfusion of platelets.  It was a long day..... left at 9 this morning and returned home at 5 pm.   
He will have his labs drawn locally on Wed, Fri and Mon.  We will then return to see Dr. Mehta next Week on Wednesday.  We all agreed to not try and get into the city next Monday because of the NATO Summit!!

So everything is still moving in the right direction!!!!!!!!!!!!!

When we arrived home a lovely box was on our front porch from one of our Arizona Angels!!!!!!!!!!!!!!!!  filled with amazing and thoughtful items.     We are continued to be blessed with angels watching over us!!!!

Day +19

Remarkable and  Unremarkable........

Recently I learned the medical terminology of unremarkable meaning "nothing to worry or be concerned about".  Today seemed to be pretty  unremarkable for Bill.  He is still sleeping a lot but seems to be getting stronger every day.  We walked this afternoon down AND around the corner! 

It was an extremely remarkable day for me in the good sense! Bill getting stronger and looking healthier.   Lovely day at church with Molly, very thought filled gifts from all my children.  Texts or calls from everyone!  A day to give thanks for so many REMARKABLE people in our lives!   
Thank you Lord for a beautiful, beautiful day!

Day +18

Battle Zone!

This was the projected day for Bill to come home so we are grateful he was able to leave the hospital a few days early!  It is difficult to be home though without the safety net of all the nurses keeping their eye on him!  He has been getting light headed in the mornings which worries me!  We monitor his blood pressure which seems ok.  His heart rate is still low( in the 40's) so that may be the culprit.  Cardiology said nothing to worry about (easy for them to say).  This morning the sheets looked like a battle zone.  His platelets were 22 on Thursday so my guess is they are now back into the single digits.  He has a skin tear on in arm and scratch on his hand.  For the rest of us these would just scab over but his lack of clotting ability just keeps them oozing!  Molly said we should have stock in Bleach the way I am constantly bleaching everything!!!!!  I will be glad when Monday comes and we go back to Northwestern for his first followup!

Day +17

No News is Good News............

I really have nothing much to report today.  Bill continues to rest a great deal.  He is beginning to adapt to his new life style of relaxing.  Initially it was difficult for him to realize he can not start cleaning the kitchen, do the laundry, or take out the trash.  I assured him once his immune system is back I will GLADLY let him take back all of the household chores!  I keep using July 1st as an arbitrary date but we will see!  I am so extremely grateful  for Molly.  She has been truly amazing in stepping up to help.  We continue to be Blessed in so many ways!!!!

Day +16

Yesterday was a Beautiful Day........

The sun was shinning when Bill got his first breath of fresh air after almost three weeks locked on the 15th floor of Prentice Hospital.

We arrived home about 3:00 p.m.
Drove up to a beautifully manicured yard compliments of our amazing neighbor, John.
Greeted by our 4 legged friend, Maxwell all happy and groomed compliments of Pat and Elaine, more neighbors and friends and Molly our amazing daughter.
Walked into a clean and organized house compliments of our amazing daughter, Molly.
Had a delicious home cooked meal prepared by again of our amazing Molly.

Complete with one of her delicious cakes!!!!!


Today Bill slept in late then we headed to get his blood draw from our local oncology office.   A bit of a confusion as to which tests needed to be run.  Linda, Bill's favorite phlebotomist, took enough tubs to cover everything.  I then called the transplant team so hopefully we now have that covered for next week.  His hemoglobin went UP!  TO 10.1 and this is without a transfusion yesterday!  Platelets at 22 which is a bit low considering he had 2 units transfused yesterday.  Hoping they will hold up until Monday when we head back into the city.
He was able to stay awake for the Family Feud so is napping now getting ready for dinner and Wheel of Fortune!

All in all a pretty darn good day!!!!!

I just received a text from Aimee's husband.  She is Day +8 today and he said had a very rough day!  The good news for her is Justin, her husband, is now well and able to be by her side!  Please keep those prayers coming for Aimee to get through these very rough days quickly and start seeing her numbers go up!!!!!!

Kay

Day +15

GOING HOME!!!!!!!!!!!!!!

The team just came in!!!    After examining Bill, Dr. Mehta started walking out and said "see you tomorrow"  then turned around with a big grin!!!!!  Nice to have a Doctor who is really smart, personable and with a sense of humor. 

They are going to give him 2 units of platelets this morning to tank him up before leaving.  So breakfast, platelets, good byes to the amazing medical staff and some of our new patient friends.  We are leaving behind Scott and Aimie who are Day +7 and Don day +6.
Hoping when they see Bill going home it will encourage them as they bottom out and struggle with the side effects. 

I can not adequately put in to words how this experience has changed our lives.  It has been difficult, emotional, scary, etc but it has also been a blessing.  We have been blessed with so much love and support, we have seen the goodness in some many people, God has provided us strength and the realization of how very fortunate we are.  Thank you seems so trite but we both thank you from the bottom of our hearts for your continued prayers and love as we now move into the next phase of Bill's Journey.

Bill and Kay

Day +14

Good News:

His white count with the help of Neupogen is 2.1
He is coming off all IV medication because he can now swallow well.
His rash is improving
His toe is looking better.
He is back to watching his game shows!

Not so Good News:

We have decided to stay at least one more day.
His heart rate is still low with some dipping into the 30's (getting a cardiology consult today)
He needs a platelet transfusion

So today we will get all our ducks in a row for going home! 

Day +13 Add On

Well a bit of a glitch today!  

Bill's heart rate dipped a bit so now they are hooking  him up to a portable EKG that someone is monitoring at all times.  This may delay going home but it is very reassuring to double check that everything is good to go before going home!!!  My guess is that with all the pre meds they give him before transfusions he is just VERY relaxed!

Will keep you posted!

Day +13

GREAT NEWS!!!!!   white count .8   so we are 75% sure we will be homeward bound tomorrow!!!!

The rash has gotten a bit better where it started and a bit worse where it is traveling.  They believe it will continue to resolve with the help of steroids and the fact his white count is going up.

They are giving him transfusions all day today in anticipation of leaving tomorrow and lasic to get rid of some of the fluids.
  
We are going to meet with the discharge coordinator to make sure I have the right meds to take home since they have changed them frequently due to the rash.

Since he needs blood draws every other day I also need to make sure we have that in place before leaving.

Chaplin Jeannie just stopped by because she heard the good news.  She saw the concern about leaving our well monitored environment on my face but assured me they are all only a phone call away! 

I know Bill can't wait to sleep in his own bed. 

Thank you again and again and again for all the prayers that have helped get him through this phase.  As we transition  back home I will continue to blog as frequently as there is something to report.  It is my hope and prayer that as time goes on I will have less and less to report but will always keep any information flowing.  We will ALWAYS hold each and everyone of you deep within our hearts and in our daily prayers of Thanksgiving!

Love,
Bill and Kay

Day +12

Sorry this is getting posted the day after.  Yesterday was busy  white count went up to .3.  So Dr. Mehta said if white count continues to go up and no other complications Bill can probably come home early in the week.  I panicked a bit because I still had not had the carpet cleaned.  I jumped on the train back to Geneva to get the house ready!  So all the linens are washed, every surface disinfected, and carpets cleaned.  I brought the car back so will be be ready to leave!     Molly drove home last night!   SOOOOOOO glad she is home!  Put a GIANT smile on Bill's face!

Day +11

Upward Bound..........but a Rash of a Day!!!!

When the team made rounds this morning Dr. Mehta walked in with a big smile and said well your white cell count has improved 100%.    Yesterday he was .1 today .2!!!!!  Normal is between 3.5 and 10.5 so there is a way to go.  His platelets were down to 10 and Hemoglobin up to 9.5.  These are distorted numbers since he has been receiving transfusions so they really are not his cells we are counting but the donor's cells.  All of his neutrophils, lymphocytes, etc are still tltc (too low to count). 

Today's major challenge is his rash.  He has had a small rash on and off for about 4 days.  They have changed his antibiotics several times.  This morning it was taking over his neck and upper back.  The team feels confident it is a reaction to a drug but trying to determine which one may take some doing.   By noon today the rash has taken over completely covering his head, chest and arms and back to the point where his back is completely one red blotch.  They are loading him with IV Benadryl and increased his dosage on his pain meds for the throat  ulcers so he is sleeping a lot.  This is a good thing  to help  pass the time quickly. 

Hospital Allergist just came and now she is going to speak to the attending physician and together they will make a recommendation to the transplant team of which medication to stop.  The balancing act here is to find another medication to cover the same bacteria group.   Hopefully they figure this out soon!  The good news is they have him so loaded with antihistamines so he is not scratching so they not too worried about this becoming an infection yet.

Here is some stem cell transplant trivia:

The preservative they use to freeze the stem cells has a VERY strange smell.  It is referred to as Creamed Corn.  The really strange thing is this smell stays with the recipient for about 24hours.  The entire room reeks of this smell but the person can not smell it themselves.  When we are walking the halls is is very obvious passing each room who just received a new immune system!  People receiving donor transplants are very lucky if their donor is local and the cells do not need to be frozen saving those around them from this unusual odor! 

Bill is all comfy in bed under his blanket awaiting the Kentucky Derby!!!!!

Day +10

Today is the Bottom!!!!!!  That means in theory now everything starts looking better!  Bill's blood counts should start going up,  his side effects should start diminishing, and they should start talking about going home.   He said it seemed a little easier to swallow this morning and refused to be put on a pain pump.  Although when I mentioned ordering breakfast I got a HUGE dirty look!  It is a combination of being repulsed by the thought of food and the painful throat!   I must say my skin has definitely thickened up these past 2 weeks!!!!!I told him going into this he gets a pass on everything until July 1st!!!! 
He got a big smile on his face this morning when he saw his day nurse is Alex.  She was his nurse for several nights earlier and he loves her thorough, quiet nature.  I call her the church mouse.  She is the only night nurse that would already be at work in the room before I would wake up. 

So.......  today he gets a red blood transfusion, hemoglobin is 8.0.  His absolute neutrofils are still too low to count.  white blood is .01 and platelets 12.    These are the magic numbers we monitor and once they start approaching a normal range consistently is when they start talking about going home.  We have spent 11 days and nights here so far. Bill's coping mechanism is to get in the zone!  Mine is to envision this is a luxury hotel without room keys!

Thank you for all the prayers!!!!  Please know how much they are appreciated and I see their power.  Bill's throat is improving and I was able to walk a few laps with Amy last night!

Kay

Day + 9

Ok............ sorry for the detour yesterday but we are back on track today!  . 

Today is looking a little better than yesterday.  The team decided to put Bill on all IV medication so he does not need to swallow the millions of pills.  They changed his antibiotic in hopes that his hives would improve and it seems to be working.  He was able to eat some jello and soup today so that is a definite improvement from yesterday.  He is struggling to keep his eyes open today but I am hoping when Family Feud comes on that might change.  His blood pressure is back to normal and his temperature has improved. 
It is my hope that yesterday was the bottom and he is now on his way back up!

So please keep those prayers coming and please add a special prayer for Amy.  She received her transplant yesterday.  Her husband started running a fever a few days ago so he had to leave and she is going through this by herself.  She is REALLY struggling with side effects from her chemo and radiation.  Despite how completely horrible she feels when I peek in on her  she still can manage a smile and always thanks me for coming to check on her.  What an inspiration Bill, Amy and others here are to those of us who wish so very much we can help them feel better but can only sit by and pray their discomfort passes quickly.

I just had a long conversation with Lauren, a relatively new nurse on this floor about how difficult it is to not be able to really do anything to help someone sometimes.    It is difficult for me to put into words  what a life changing experience this has been and continues to be for us.  Sometimes I forget how unimportant the silly, sometimes pathetic work stuff really is.  But then I look at Bill or Amy or Scott or Don and see them fighting through some REALLY tough stuff and it sure puts thing into prospective.

Thank you all so VERY much for those prayers, love and never ending support!

Day +8

Sorry I am late in getting today's information out.  It has just been one of those days........  One that we expected but hoping would not come.

To quote my guardian angel   "Things have to get worse before they get better.  Fever and sores developed today as the doctor predicted.  Please say a little prayer this all passes quickly."

They do an amazing job here at Northwestern and kick into high gear.  As a precaution they put Bill on iv antibiotics, took blood cultures and chest x-ray to rule out anything other than this just being a typical result of his white blood count being too low to count so his body is fighting back.

Bill's answer:         Sleep and wake me up when I am all better!!!!!

Thank you everyone for those continued prayers.

Bill and Kay

Day +7

Well today the shoe dropped but so far  it appears to be only a slipper!!!!

Bill's hemoglobin dropped below 8 so he is receiving a couple units of blood today.  His platelets are still at 17 so they will probably give him those tomorrow.  Platelets are nice because they can transfuse them rapidly.  The Hemoglobin takes about 2 hours per unit so he has been napping all day while receiving those.   Hopefully after this long nap he will be ready to hit the hall for a few laps!

His white count is down to 0.3 so this is where they now monitor him very closely for any sign of infection.

His appetite is pretty much non existent but he does seem to still like his salty snacks every once in awhile. 

During his nap I ran across the street to have coffee with ,Carolyn, the previous transplant patient I referred to in an earlier blog.  It was so wonderful to see her in person and how well she is doing.    She filled me in on some of her experiences and I caught her up with Bill.   She just recently made contact with her stem cell donor!  What a beautiful gift this complete stranger has given her.  Every time Bill receives blood I am so grateful to the person for taking the time to do the selfless act that is keeping him going!    It turns out she was in the same room Bill is in now!!!!!  What a very small world we live in.

So from here on out we wait .............and watch for his numbers to go up and stay up!

So MANY people have asked us "How can I  help?  What can I do?"  You all are providing us with so many prayers, an abundance of love and incredible support. We continue to be Blessed!   Perhaps, though you might consider going to donate blood!  It is such an amazing gift to the person on the receiving end!

Bill and Kay