Thursday, October 23, 2014
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)
at 6:07 AM