Thursday, June 26, 2014

Day +56, Forging Ahead

“So do not fear, for I am with you; 
do not be dismayed, for I am your God. 
I will strengthen you and help you; 
I will uphold you with my righteous right hand.”
ISAIAH 41 : 10”

The above verse is a passage that Clif has memorized and uttered many times over the past 12 years since this affliction began.  It has always given us something very tangible to hold on to.  

Yes, we are in need of further "unexpected" prayers.

This past Monday in our quest for reaching and sprinting for the goal of Acute Rehab, a bone marrow aspiration and untrasound of the abdomen were performed.  I believe these tests were probably precursor necesseties to attempt to close out our case and move us into the new venue of Inpatient Rehab most likely at Huntington Hospital in Pasadena.  

The Bone Marrow results returned and we continue to be Leukemia free.  Praise God!  The ultrasound results revealed an enlarged spleen. This is being addressed, and until I have further concrete evidence I'm not quite sure what the path of treatment will be.  This may or may not keep us here longer.  

I apologize for such a delay in posting.

Wednesday, June 18, 2014

Day +50, Making Progress

My Hope comes from Him.  Psalm 62:5

Prayerfully, we are nearing the goal; to discharge soon.   The last few days we have seen a healthier looking, sounding and feeling man!  

Being uncertain of the next steps, there is a good possibility that Acute Rehab may be coming soon.  That means Clif will possibly transfer from City of Hope to a place that he will stay to rehabilitate.  The process of reversing the atrophy in the legs is taking longer than I would have ever thought.  We are still  working on getting up and down from the bedside.  Yesterday, Clif was hoisted from a sitting position onto a chair that is made of thick PVC plastic pipes, durable and perfect for sitting and taking a shower.  It's been about 50 days since he has had the luxury of taking a shower, another simple indulgence that put quite a smile on his face.

A metal hanging triangle was placed above his bed to allow him to use his arms to lift himself and sit up more freely.  Yesterday, he was showing me his muscles that have developed in only a few days of having that installed.  I highly recommend in a sitiuation where one is bed bound like Clif to have this installed, it will speed recovery and strength!  You need upper body strength when getting up on your feet, to pull yourself up onto a walker.  Core strength follows.

Clif is doing well!  The Saran Wrap, was less evasive than thought.  He still wears it, but in segmented places on the body, the places that need the most attention.  But it has worked beautifully.  His skin currently looks 20 years younger.  Meds are reducing or exchanging from iv drip to pill form.  The blood counts seem to fluctuate and platelets are still needed daily, another reason why a medical rehab facility may be in our future.  Platelets can only be distributed by a medical facility, which might rule out at home physical therapy.  

Clif has a great appetite and is eating and drinking all of his diet.  He is regaining lost body weight and looking more stealth.

A field trip to Tustin, CA today for our sons graduation ceremony today was ruled out! The doctor was brutally honest with me and would not entertain any discussion of taking Clif offsite.  Fortunately due to technology, it will be live streamed right to Clif's tv in his room.

Grateful for your prayers!

Friday, June 13, 2014

Day +44 Post Transplant, Saran Wrap & Relocation

On Wednesday of this week, for the first time in over 45 days, Clif with assistance was seated in a wheel chair and we went out to the lobby and sat and talked for an hour.  Being free from his room of white walls and a view of the roof tops of the neighboring medical bldgs, we enjoyed the view from the 4th floor lobby.  It was pleasant!

Tonight (Thursday) before bedtime, Clifs body was wrapped in Saran Wrap!  Today, a dermotologist was inspecting the rash that has developed over his entire body, the treatment; two different creams and wrap him in that plastic wrap you use to keep your foods fresh.  For the next three days, Clif will undergo a very creative method to help heal the skin and prevent scarring and itching.  The wrapping will be changed 3x a day, yes he will sleep in it, he will rehab in it and pretty much most of the time be sealed tight from exposure to whatever.....I am certain some really great jokes will arise from this.

We have also been relocated back to the 6th floor!  Since telemetry (heart monitoring) is no longer necessary he was moved back to the transplant floor.  This is the 9th room we have had since the beginning of our stay.

Clif is eating very well, getting PT Rehab 2x a day and overrall feeling pretty good.  The intestinal bacteria he has been fighting since transplant has tested negative twice now, one more test will be performed or is possibly in the works and if it tests negative he will be considered clear.

Many meds have been removed, he is regaining strength and we continue to have great hope for a full recovery.  
This picture was taken last week before the rash and swelling.  A good visit with business partner Dave Newton!

Graduation for our son Charlie is next week, not sure what that holds for Clif.  One of his nurses, Sobha who I spoke of months ago, she was the one who informed us of our 10 point match, she has become a very dear treasure.  She has offered to ride along to graduation and care for Clif should he need any medical assistance while parked on the field at the graduation ceremony!  Still holding loosely but praying continuously that this might be a field trip that he can take.

Talk of near future rehab and what that might look like outside the walls of COH is in the works, will keep you posted.  

Let us continue to haggle with God for his mercy and healing for Clif.   

“Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.”

1 Thessalonians 5:16-18

Saturday, June 7, 2014

Day +38, 39 & 40 Post Transplant, Rehab & Graft vs Host

Rehab is underway!  The upper body is coming around much faster than the lower, patience is required.  Physical Therapy which takes place diaily,  brings in 2 and sometimes 3 guys to work with Clif, since his leg and core strength are virtually gone, they lift him from bedside to standing.  Standing up in one position is taxing but we are seeing progress.

As Clifs body becomes more familiar with his new dna, or better said his donor dna  becomes more familiar with his body, not all is expected to be harmonious.  Graft vs Host (GVH) is the most frequently talked about symptom at this stage of the game.  GVH is expected yet it is unknown in how it will present itself.  Like any new relationship, the exciting newness of the dating phase has calmed a bit and now the reality of body chemistry accepting or rejecting is taking place.  

Clif started swelling on Friday and a rash immediately followed.  By Saturday he swelled up to such a degree that his eyes were barely opening.  Sunday showed some mild relief.  As these symptoms began, the counter effects of different drugs to treat symptoms also began.  This is GVH, so we are told.  The doctor said this is about the time when one will start seeing effects of the transplant.  

The orchestration of delicately balancing drugs and adding new drugs is here.  This is what City of Hope is known for, their ability to manage and navigate bone marrow post transplant medications.   Please be praying that their wisdom is equal to or better than the task ahead with Clifs current and possible future symptoms.

“Many, O LORD my God,
are the wonders† you have done.
The things you planned for us”

Psalm 40:5

Tuesday, June 3, 2014

Day +34 & 35, DNA Change, Nasal Tube Extubated and Catheter Removed

Yes, much is happening very quickly!

Last Thursdays DNA testing was performed and returned showing Clifs Blood DNA is 100% from our German donor!  As best as I can explain, Clifs new bone marrow, now creates new blood cells that are all the same as our donor.  His saliva, tissue and teeth however will remain the same as always.  So in a nutshell, you and I when we get a swab in the mouth cheek area, our dna will match up to our own blood.  Clif however will show 2 seperate dna's, one from saliva (revealing his old dna) and one from blood (revealing the donors dna).   Sorry if I am being very wordy here.

The nasal tube running down to his stomach was removed yesterday.  Clif passed the swallowing test late afternoon yesterday and has graduated to eating foods that are pureed.  Although his appetite is still very low because he has been and still is receiving TPN (nutrition in an iv line), he will be weaned from the TPN to bring his diet back to solid foods.  

Finally, the Urine Catheter has been removed this afternoon.  Challenging as it may be since Clif is unable to stand, relieving his bladder is our next hurdle.  Please pray everything works as it should.

Clif has been working with Physical Therapy to get him up on his feet.  Each day we see a little progress.  His room has been a swinging door of medical personnel of all types.  He counted in the night a total of 9 different people entering in between the hours of 8pm and 6am.  Yes, fabulous treatment, but you absolutely get no rest at this point.

He is still very weak and we very much covet your prayers!  God has been amazingly merciful in our last 4 months, and not a day goes by that we give thanks for all that we have!

“May those who delight in my vindication
shout for joy and gladness;
may they always say, “The LORD be exalted,
who delights in the well-being of his servant.”
My tongue will speak of your righteousness
and of your praises all day long.

Psalm 35:27-28