Tuesday, August 26, 2014

Day +120, A Picture Is Worth A Thousand Smiles!

“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.”
JOHN 14 : 27”

Pictured above is Joe Maiolo bringing the joy!

We've had a few more challenging days, both physically and mentally.   "Recognizing Change" is the  banner over my head, literally.  When appointed caregiver, you actually become an extention to ones body and their mental perspective in some cases.  For Clif, since he has been here for so long and taking such a variety of drugs, one is likely to get confused, lose track of time or sometimes hit rock bottom.  Many of the drugs that are meant to help with anxiety, nerve issues or even help you sleep all affect the mind.  So when we see the mental behave out of the norm, the red flags go up.  A slight form of depression was starting to reveal itself, but I think it's been addressed quickly with much wisdom and thought.

A blessing this past week was having Holly here, Clif's sister from New Hampshire.  I must say, she is insightful with her observation of the mental.  Her husband Peter, an ER doctor has also been an extra benefit and their collective wisdom has been comforting for myself and has allowed the three of us to make some pretty good deterrminations that have benefited Clifs overall health.  Having them to turn too daily has made us a great team!  God really has provided some extra special support in this area.  I am truly thankful.

Clif had an upper and lower GI yesterday, results will be forthcoming.  Having recent and new abdominal pain called for further investigation.  With this, his appetite has decreased over the last week and we have seen a bit of weight loss.   Being creative on the food menu has also become increasingly boring!  We need to be gentle on the intake, so any thoughts on gentle menu items safe for the intestinal system are completely welcome.

As he continues with rehab, he attempts to take "one step up".  Jose pictured to the right of Clif has a certain gentle spirit and the strength of Hercules!  Knowing this, Clif trusts him completely to be his strength.  Yes, we will leave here with people who have deeply touched our lives and that we will keep in touch with.

Thank you all again and again for encouraging us to win this battle, for praying for our strength and courage, for routine emails and texts that keep us integrated with people, for meals in abundance to the house and for bringing joy and company and much more.

“You are my refuge and my shield;
I have put my hope in your word.”
Psalm 119:114

Saturday, August 9, 2014

Day +108, Some Good News

“Your word is a lamp to my feet
and a light for my path.
PSALM 119 : 105”

Praise God for good  bone marrow results!  

The cellular content that makes up the marrow looks healthy and appears to be producing all donor cells.  This is very good news.  We are still waiting to see how much fibrosis is in the marrow, but the current cellular and fat percentages that are in there look good.  There is some fluid in the sack around the heart but it is a small amount and they are not concerned.  The aspergillus in his left lung is slightly improving, not currently concerned.  The spleen is reducing in size, there is still a possibility of removal but we will watch and pray that God continues to heal it on its own..  There are no traces of leukemia, big sigh of relief.  There are intermittent stomach aches possibly from an ever growing menu of food items or could possibly be gvh.

God willing, things are winding down on our stay.  We are fast approaching 7 months.  Since Clifs platelets remain low and the need for transfusions continues daily, the idea of moving to a lower level of care type facility or an Acute Rehab hospital will not happen yet.  The goal is to get him medically healthy enough to relocate to a facility that can whip his physical body back into shape.  So as we remain, we will continue to work diligently at strengthening and relearning the body to do the things it needs to do; like walk.

Rehab continues daily, a walker is placed in front of Clif and from his bedside each therapist places a hand on a belt that is placed just under his chest, on Clifs count of 3 the three of them gently lift him to his feet, he grabs the walker, steadies himself and once standing and knees gently pressed in by one of the helpers the very careful first step is made, slow but steady as we go.  Someone follows  behind him with a wheel chair to be a safeguard for him if he is getting to tired and to give him a break when he needs it.  Progress is being made.

Thank you all for a very happy birthday last week for Clif!  His spirits were lifted and it took 3 days to read through all the uplifting and encouraging notes.  There were many happy tears.

Another mile stone has come, I will be taking our son Charlie to ASU Polytechnic on Monday, a very exciting yet saddening moment, I was very much hoping Clif would be on this road trip!

One last thing, two days ago Clif made his first visit outside the walls of City of Hope in 6 1/2 months, what you and I take for granted he was able to enjoy in a very moving way.  

“My heart is steadfast, O God;
I will sing and make music with all my soul.”
Psalm 108:1

Sunday, August 3, 2014

Day + 97, Happy 53rd Birthday Clif!!!

“Be on your guard; stand firm in the faith; be men of courage; be strong.”

1st Corinthians 16:13

Yes, today August 4th, 1961 your friend Clif Fincher turns 53.  He shares this same day and year with President Obama!  If you want to text him a bit of encouragement or wish him a happy birthday that would be a great gift.

A huge "Thank You" too Lee & Associates in Orange for hosting a very successful blood drive in Clif's name,  we understand somewhere around 60 people donated, truly a blessing and what a selfless sacrafice!

Clif has been making good forward progress.  Although a bit frail in his appearance his determination to press on and finish strong is impressive.

It seems the focus this past week has been to get as much fluid off his person as possible.   A diaretic drug call Bumex has been given daily since his departure from ICU, I think he has probably lost 10-15 pounds in just fluids in the last 2 weeks.  

Some health specifics include;  the spleen continues to decrease in size, another big encouragement knowing a splenectomy will probably not be part of our future.  Clif continues to need blood products  daily.  Rehab has been tough, rebuilding quad strength is the primary goal.  Steroids which have been given daily since transplant are harsh on the muscles.  When our most recent battle of GVH appeared, a dramatic increase in steroids took place.  A gentle weaning back is happening but the cost of all of this is weakness to his muscles.  Clif is also off TPN (nutrition on an iv drip)  his appatite has been hardy and a favorite food right now is Vanilla flavored home made protein shakes, a good 450 calories in each one.    Pain meds are being reduced daily which has been tricky, the goal is to get him on all pill form drugs and eliminate all iv drip drugs.  Some pain meds like fentanyl only come on a drip, this drug is very friendly to the brain (little to no confusion or delusion), whereas dilauded reaked havoc on Clifs mental abilities, we will definitely keep that drug at a distance.  A CT will be performed soon to give assurance that the abdomin is free and clear of any concerns.  He also continues to take anti fungals for the continuing lung issue that was discovered way back in February.

Our hope for Clif is to be deemed medically ready for discharge, soon!  We are uncertain of our departure, but we do know that rehabilitating Clifs body will become our next mountain that we fully expect to conquer!  Although still unable to walk, we are in the planning stages of what to do next, inpatient or outpatient rehab will take place God Willing very very soon!!! 

Doctors continue to be amazed by Clifs progress, he truly has been an "Extraordinary" patient.  

Never lose Hope!