Day +180, Six Months Post Transplant!

“Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.

JEREMIAH 29 : 12 – 13

Clif has been home for a little over a month now.  We are all adjusting to an ever changing health environment.  It has not been easy but we are all very glad DAD is home.   His attitude continues to be good and he is determined to win the race.  

His weekly routine incudes; Monday/Thursday visits to City of Hope (COH), and Tuesday/Wednesday/  Fridays he does Speech Pathology, Occupational Therapy and Physical Therapy at Winways Rehabilitation in Orange Park Acres.   

The hospital visits each time include a visit to the VAD (Vascular Assist Device).  Here is where the picc line is serviced.  Back on February 3rd, 2014 when Clif first arrived at COH a picc line was installed into his right upper arm to push or administer all needed medications in fluid form and also to pull blood draws.  He has a single line/double tubes which means 2 seperate access lines can feed into the blood stream.  The picc line itself is a line that runs straight to the heart for immediate access into the blood stream.  Each Thursday the device is cleaned and redressed.  The device will remain until we are absolutely certain we are in the clear.  Once finished with VAD we head over to Dr Snyders office, our oncologist for review of the blood counts that were just drawn minutes before and to discuss any existing or new symptoms (like a recent infection on his elbow).  This place has got it together!  These visits also include an in depth review of all blood counts, if something is minutely off in his blood, modications are made to the myriad of drugs and supplements taken.  Steroids, Immune Suppressants and Magnesium have been the most volatile.  

Clif has had some struggles this last month.  Several falls and one visit to emergency for observation.  Because of this, all walking requires a shadow, that means someone is behind him every step he takes.  We have hired an in home health care assistant (Lazelle, a wonderful Philippino helper) she comes at 9pm and leaves at 9am Sunday through Thursdays.  Clif is not sleeping well and  in order for me to give him my best, I need to get some sleep.

The Graft vs Host Disease (GVHD) is still attacking but we are managing it from home.  The Prednisone used to fight it after long term use weekens the muscles, especially in the upper quads of his legs making it a very difficult task to recover and rebuild strength in his legs.  So, while a fall risk and able to be home, sit out front, do homework with William, have meals with all of us, and slowly reclaim his life, careful mobility and strict discipline and obedience to NOT WALK AROUND SOLO  from Clif is required.

Folks, its not been an easy road and we continue to ask you to pray for all of us.  Charlie is adapting to College life, Sydney is now preparing College Apps and William has had some struggles at school but we are working diligently to improve his academics.  I am holding down the fort, my grip is strong and my strength comes from quieting my heart, sitting still and listening, it is not always easy.  Time is spent first thing with The Lord, it has been life sustaining to me personally.  I have found that a quiet spirit is of priceless value, stillness has allowed me to accomplish much in my days.

Thank you also for bringing meals, Clif has had some great food since being out of the hospital and we are all very grateful.

Our faith is deep and we are pressing on towards the goal of a God Willing full recovery!!!

Let us run with Patience.  Hebrews 12:1 (KJV)

Day +145, "Celebrating and Praising Him Who Is Able To Do Immeasurably More Than All We Can Ask or Imagine"

“When I called, you answered me;

you made me bold and stouthearted.

May all the kings of the earth praise you, O LORD,

when they hear the words of your mouth.”

Psalm 138:3-4

Clif is scheduled for discharge this Tuesday, September 23rd, 2014, Praise God!!!

As I write this; many many thoughts swirl around in my mind.  Today is 145 days past the day Clif received his German stem cells, it is 231 days since he was admitted to the City of Hope.  It will be just about 34 weeks since he has slept in our bed, stood in our kitchen, pet Buddy & Cocoa our dogs, picked up his socks, got a glass of water from the refridgerator door, used our bathroom  and many other simple comforts that he will experience very very soon.  Clif is coming home, Hallelujah, yes their will be much rejoicing when he steps across the threshold of our home!

A recent week long trend of good blood counts has rewarded us with a departure that we have anticipated for a very long time.  We have possibly turned a major health corner, a corner we have been waiting and praying to see.  

Physical Therapy (PT) has been going very well.  Clif now wears Nike cross trainer shoes to walk the halls with his trusty walker that needs to be painted and customized with flames painted down its metal framework!  This past week PT has included practicing getting into a car.  Clifs first request as he approached the car was, "Can I practice sitting on the driver side"?  it was quickly squashed!  His reply, "Well I guess Doreene can drive me to work", hmmmmmm like I haven't done enough driving already!  This was revealing of where his mind is.  He remains on many drugs, ones that would prevent anyone from driving!  Although disappointed, he completely understands and will continue to wait patiently as life slowly returns some of the benefits he has not been able to enjoy.  PT will become much more rigorous, our hope is to immediately begin a very regimented schedule to reclaim the old body, "give it some new upgrades" but operate with an entirely new source of fuel, German Jet Fuel!

Health still has concerns;  fluid accumulation is still our main issue, elevated blood pressure is being addressed, pain in the tailbone area from a recovering bed sore continues to scream for the most attention and a few other things.   Fortunately, we will monitor these things on an outpatient basis, with bi-weekly visits to begin immediately this Thursday.

Today, the forecast is good.  God has been beyond gracious!  Friends and Family,  you have held us up and we are grateful.  We look forward to celebrating very soon with all of you!

A Dry Run!

“Do you not know?

Have you not heard?

The LORD is the everlasting God,

the Creator of the ends of the earth.

He will not grow tired or weary,

and his understanding no one can fathom.

He gives strength to the weary

and increases the power of the weak.

Even youths grow tired and weary,

and young men stumble and fall;

but those who hope in the LORD

will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint.”

Isaiah 40:28-31

Day +130, The Battle Continues.........

Blessed are all who wait for Him.  Isaiah 30:18

In our last update we shared an upper/lower GI was being performed to hopefully shed light on why Clif was having a large degree of stomach cramping, abodmenal distention (again) and plumbing issues.  The findings were nothing.  There has been a great degree of mystery the last 2 weeks but today we feel a new discovery was made.

Dr Ali, one of our "Team 5" of oncology/transplant doctors shared a new word; Serositis.  He explained this was a manifestation of GVH.   Serositis is the medical term for an inflammation of the lining of the lungs, heart, or abdomen and abdominal organs.  In a nutshell, Clif is accumulating fluids again around these areas.  The treatment;  marketly increased steroids over the next 3 days and administer a new drug called Rituximab (Rituxin) delivered once a week via IV for the next 4 weeks.  Prayerfully this issue will not slow his progress made with Physical Therapy.

Today, he was introduced to the Viking Lift (see picture below), a piece of equipment with wheels and a sort of Jumpy harness that allows Clif to walk with a walker but be a little lighter on his feet.  It continues to require 2 assistants but definitely gives a more liberating feel to the art of walking.  Yes, it is much like the jumpy swing we all used with our babies, only it is not stationary this one travels.

Good friend Steve Fodor just couldn't stay away.  He joined us this week as an inpatient and Conqueror of "Colorectal Cancer"!  He is a very dear friend and we continue to pray for his successful recovery.  

“I wait for the LORD, my soul waits,

and in his word I put my hope.”

Psalm 130:5

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

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

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!

Day +83, Improvement

“Trust in the LORD with all your heart

and lean not on your own understanding;

in all your ways acknowledge him,

and he will make your paths† straight.”

Proverbs 3:5-6

Trusting Gods hand in all that has happened and continues to happen has not been easy.  But I must say loudly, it has been the hand that has sustained both Clif, myself and our family through this almost 6 month stay at the City of Hope!  Do I think it is a City of Hope?  Absolutely!!!

Clif has been here in ICU for now 17 days, this is our 3rd stay in this unit.  I have seen amazing things here and I cannot say enough positive comments about the care and treatment received.  

Since the last update, 6 more liters of fluid off the abdomen and 754cc's of fluid off from around the heart and lung area.  He looks very good and is improving.  He complains of some chest pain, so I will ask for another ECCO just to confirm nothing is building up again around the heart.  I am told it is common to have this type of pain after draining like this occurs.

Physical Therapy and Occupational Therapy are back!  Memories are a little scrambled but some of the most recent ones of what he doesn't remember are worth the loss.  

The doctors collectively believe the fluid build up is caused from Graft vs Host.  In slang language; Clif has a 28 year old, untamed wild horse living in his barn.  The problem is everytime we think we get him harnessed and somewhat tamed, he busts out of his stall again and messes up the barn.  The graft is attacking the host!

Thank you again for continueing to pray us!

Day +76 & 77, Prayer

"He knows the way that I take,  when He has tested

me, I will come forth as gold."  

Job 23:10

Slow but sure progress has been the path for the last 10 days, however new pain has arisen,  uncertainty of its cause and many more tests and scans .  Yesterday, Clif was having terrible pain in his entire abdominal area, a procedure was performed by needle to remove fluids that were building up (3+ liters).  One of the complications for the last 6 weeks has been an irregularly large and distended abdomen.  

An ECCO was performed, CAT scan, Ultrasound and X-rays yesterday.  

Something I failed to mention on the last blog was that Clif was intubated when readmitted to ICU back on July 5th.  Fortunately, his kidneys have been strong and no dialysis was required.  July 11th, the intubation was removed! , the next day he asked for a bagel with peanut butter &  jelly and a piece of turkey on top, yes this is something he likes.  Although, unable to give this, we took babysteps and introduced popsicles and ice chips.  Slow progress was continueing.

So today, we wait expectantly on The Lord to reveal and prayerfully heal.  The next couple of days I am asking for very specific prayer;  to determine the cause of pain and to relieve it!  for all internal unknowns to be revealed & treatable and for continued forward progress.  

“Trust in Him at all times, you people;

Pour out your heart before Him;

God is a refuge for us.

PSALM 62 : 8 (NKJV)”

Day +70, ICU Stay #3

“May God be gracious to us and bless us

and make his face shine upon us.

Psalm 67:1

On the evening of July 4th Clif spiked a fever of 101.9 and was having a problem breathing.  Protocol on transplant patients is to order blood cultures when a fever exceeds 101.5.  This is a very good plan.  Because of this plan Clif was diagnosed very quickly with a blood infection called Gram Negative Bacteria which caused Sepsis.  There are many strains of this bacteria and treating it is not usually that easy.  He was actually diagnosed with 2 seperate strains. The antibiotics used are effectively treating and reducing the infection.  The origin of these bacterias is not exactly known; could be from the bowel, the picc line or the bed soar, for examples.

Early morning July 5th at 2am Clif was transfered to the ICU unit.   At about 3:45am he went unresponsive.  I am assured this was not cardiac arrest.  However, do to a very low to no pulse reading, CPR was administered.    

Since this event, Clif is improving.  He was never sedated but because of the toxicity of bacterias in his blood, it acts as a natural sedative and he is slowly coming out of it.  There is some fluid around the heart but they are not concerned and feel it is from the chest compression performed when the initial "Event" occured.  

Please continue to pray for his total recovery, again, Nothing is impossible with The Lord!

Day +63 & 64, Vaccination's, Enlarged Spleen & Rehabilitation

This week Clif was given 5 vaccinations, the exact same ones a brand new baby gets!  It's been 24 hours since injections were given and no allergic reactions have occured, good news.  More often, vaccinations are given at about 12 months post transplant.  The reason for early injection will be explained in more detail below.

Enlarged Spleen;  We mentioned last week that the ultrasound revealed an enlarged spleen.  We have discovered that his spleen began enlarging when Nuprigen was increased a few weeks ago to boost his White Blood Cell production.     Since this discovery, we are holding off as much as possible in using this drug.  It's still necessary at certain points when his counts are too low.  Remember, WBC's help fight infection and we still have the lung issue, aspergillus which is currently under control but we don't want that to become a problem.   Unfortunately, what they thought was a distended abdomen and excess fluid was also his spleen enlarging.  By the time we learned this, concerns started to mount of what the next step should be.  A Splenectomy is definitely a possibility in the future.  If indeed that should happen, Clif needed early vaccinations.  Our doctor is tilling the soil and preparing for what might possibly happen and being vaccinated is necessary.  We are 50/50 on whether the removal of the spleen will occur and if it does, Clif needs to get stronger.    

This has been a difficult week for both of us.  We were moving in the direction of a rehab hospital and hopes of coming home were in view.  When the recent findings of the ultrasound took us to such disappointing news, neither one of us were prepared to deal with this.  We still do not know the path of treatment we will be taking.  We are waiting and trusting the wisdom of the team of drs and surgeons on our case.

Rehabilitation continues;  although not able to stand on his own, Clif works diligently and daily at strengthening his entire body.  

“Because you are my help,

I sing in the shadow of your wings.

My soul clings to you;

your right hand upholds me.”

Psalm 63:7-8