Why We Should Pray Without Ceasing

"Not only does sin hinder prayer; prayer hinders sin.

The two are always opposed.

The more careless we are about sin, the less we will pray.

The more we pray, the less careless we will be about sin.

Both sin and prayer are powerful forces.

Which one is moving you?"

- Dr. Alvin Vander Griend

An Update & Request for Prayer: August 21, 2010

By the grace of God, He pulled me out of the ICU and planted me firmly in my own bed late last night! I was able to wean off of oxygen yesterday and my wise physician knows that I am safer at home - it separates me from exposure to more infections in the hospital; I sleep and rest better at home (much needed for my recovery); and the main IV drug to treat the staph "happened" to have an oral version that is equally absorbable. I made the transition from IV to oral Zyvox and was sent on my way.

My cough has improved but is still present and my temperature has returned today. The IV steroids that I required this past week for adrenal support, again, made my sugar levels out of control, so I have been receiving insulin. We arrived home late last night and I knew I needed to check my sugar and in my drug haze, I could not locate my monitor. So our best friends came to the rescue and brought a glucose monitor and strips up at midnight to me. I was so exhausted. Kevin and our friends prayed for me and they said I fell asleep while they were praying for me.

We will have to monitor my blood counts closely for the next couple of weeks - this Zyvox drug has multiple warnings for its use with patients with marrow suppression (ME). It can induce lactic acidosis which can be very dangerous, so we will be alert for those signs. I have to follow a strict low tyramine (amino acid) diet with Zyvox also.

Just as I began to have a moment of celebration of being discharged, my trusted oncologist of many years called me. He has supposedly retired :-) but has checked in on me most of this week from Maryland - even calling Kevin at 5 AM on the morning I was admitted. I can always count on Dr. M to be forthright and honest with me - traits I appreciate in my physicians. Although sometimes the truth is a challenge to digest, I believe it is imperative that no one sugar coats what might be ahead for me. He encouraged me that my family doctor and I need to begin some dialogue about my being putting on a ventilator in the future - because he stated, "Stacie, it is not a matter of IF you will be on a ventilator, it will be a matter of WHEN you will be on a ventilator." I realize that I have miraculously survived two serious lung infections in ICU in two months - a fungal infection and a staph infection. Just as easily, either of these infections could have taken my life.

It is never easy to consider, ponder and discuss end of life strategies, but I am making efforts. I have been walking around with my files with my living will, will, medical power of attorney, funeral plans, etc. for the most of the summer. I will pull these files out and try to put into words some of the most daunting planning that I will ever be asked to complete. The work has been difficult and often brings tears. I will persevere and finish these tasks as I will not leave decisions such as these for those I most love to make.

Fortunately, my nurse yesterday was Lissa. She is a 40 year veteran of that ICU department and she has cared for me for over a decade. She had a frank, open discussion about end of life strategies with me and answered some questions on ventilators, etc. for me. I know that God allowed her to be with me yesterday when I was faced with those considerations.

My NIH oncologist also told me that the splenic irradiation has been tabled for now. I knew in my heart that to begin the irradiation with infections present would be suicidal. I had hopes that the irradiation would offer some relief for me and possibly reduce the tumor load. However, I cannot risk killing myself to achieve those goals. Once again, the leukemia roller coaster is racing up and down so many hills, making swift turns from one concern to the next, and I am barely holding on for dear life.

Monday, I will return to the Cancer Center at 8 AM for my all day IVIG infusion. It will be difficult to do right now with feeling so poorly, but my doctor feels it is mandatory to have that immune support while I fight staph in my lungs and I agree.

Yesterday while I was at the hospital, my Dad and Mom came with the traveling version of a Cancer-versary party for me - a decorated tree with "14" decorations on it (since it was my 14th Cancer-versary this week). They had a plate of cupcakes and a beautiful praying hands necklace and journal for me. Thanks, Mom and Dad! I couldn't eat the cupcakes with my sugar running high from the steroids, but my nurses enjoyed them.

Your prayers are treasured.

5513 Days

5513 days. Fourteen years ago today, I was diagnosed with leukemia. In many ways it seems that I have endured this battle my entire life. I close my eyes tightly, focus, and my mind's instant replay cannot locate a memory of how it feels not to be sick or in pain.

That steamy August day will never be forgotten. I can envision myself preparing for the appointment and singing over and over the chorus Sanctuary:

Lord, prepare me
To be a sanctuary,
Pure and holy
Tried and true.
With thanksgiving,
I’ll be a
Living Sanctuary
For You.

Driving into the cancer center’s parking lot, those lyrics still replayed in my mind. To lift my feet to walk into the office felt like I had lead feet. The racing of my heart reached a crescendo as the doctor ever so callously handed me a sheet of paper.....highlighted in yellow were the life altering words: Diagnosis: Leukemia. The words, “NO! NO! NO!” resounded in my mind but could not locate the pathway to my lips.

On our 20 minute drive home, my husband and I had to quickly decide what we were going to say when we pulled into our driveway to face our three young daughters. I knew without hesitation that we must tell them the truth. John 8:32 instructs us: “…..and the truth will set you free.” I detest lying and I never lied to my daughters, I was not going to be a mother of deception and most importantly, I was assured that “All things work together for good for those who love the Lord and are called according to His purpose (Romans 8:28).” Even on this darkest day, hope and goodness would emerge.

God has answered that musical prayer I sang repeatedly that morning of my diagnosis. He prepared and continues to prepare me to be a LIVING SANCTUARY FOR HIM. He has given life days and years beyond what anyone predicted for me. Just this morning, my nurse asked me how I have the peace and hope that I do in the midst of such a medical prognosis of having “months to a year” to live. And I replied, “Because I know how wonderful my eternal destination will be!”

Would it have been easier not to have trudged this path? Most definitely.I have had thousands of blood draws and painful tests and procedures. I have traveled tens of thousands of miles in search of the world’s best doctors. I have nearly died multiple times from numerous infections and drug reactions. And I have read and researched thousands of pages of medical journals, textbooks, and studies.

Yet, if I had not walked down this dusty trail, I never would have known the depth of the love and relationship that I have with my Heavenly Father. I read this quote this morning, and it is quite applicable to my life passage:

"Perhaps one reason God delays His answers to our prayers is because
He knows we need to be with Him far more than we need
the things we ask of Him."
- Ben Patterson

God has answered uncountable prayers for me. A brief recap would include the multiple times He has reached down and grasped me from death’s claw. Also, He multiplied those 3 years I was told I would live when diagnosed into 14 years of life to watch our daughters grow, graduate, marry and to become a Grammy. He allowed me to mature and age from a 32 year old young mother to an almost 47 year old grandmother with a few grey hairs and tiny wrinkles. I would have applied moisturizer if I had known that death wasn’t going to knock at age 35!

God, the Potter, has taken the lump of clay known as Stacie and has molded and refined me through these trials. He knew trials such as these can devastate people without faith, however for His children, God knows that life’s fires refine us to be more like our Heavenly Father. Until I breathe my last breath, I pray I will grow to reflect my Savior more and more.

I am certain that this topsy-turvy voyage my family has sailed together has been life altering and challenging. I am also certain that nuggets of goodness have emerged. GOD will allow GOOD to emerge from tribulations when we remain obedient, faithful, hopeful, joyful and grounded in Him. Some of the golden life nuggets that I have witnessed from our family’s journey include …..

Our oldest daughter is a nurse (almost Nurse Practitioner) and her nursing skills are a reflection of all the exceptional nurses who have cared for me and are void of the nursing skills that lacked in compassion and competency. Her patients’ families often comment on the care that she extends to her patients’ families. For many long years, she was that young daughter who sat in the hospital with me. She understands the needs that families possess and the needs of her patients. She has battled a lifetime of congenital heart disease and I see her with the same passion for research of her condition and advocacy for the disease on even the national level as her Mom possesses.

Our second daughter (by only three minutes) has strength and determination and fortitude as she copes with her own health challenges as a Type 1 diabetic. She, too, researches her disease, locates reputable physicians, and engages every resource available to her. I hope that something I have implemented as a chronic disease patient has touched her own spirit. She has translated her own trials into her work with many other diabetic patients as a Registered Dietitian. Young, newly diagnosed diabetic patients have often been touched by our daughter’s own experiences. Recently she told me of a young girl who was brought by her mother for a consultation with our daughter. She, too, had been diagnosed as a Type I diabetic and was full of anger and frustration. Her body language told our daughter that she was angry to be in her office. After our daughter shared her own journey and the young girl could see a successful, beautiful diabetic living life fully, she softened. And when the consultation ended, she told our daughter, “You are the coolest dietitian I’ve ever met!” Another life changed.

God chose a different life path for our youngest daughter. As passionate as her twin sisters are about their medical careers, our youngest daughter cannot look at blood, despises all medical procedures and followed a career in marketing and advertising. She has gained a heart of compassion through our journey. She is touched by the homeless man on a bicycle with his homeless dogs and offers a drink or money. The young widowed father with small children stirs her spirit as she watches them lose their mother to cancer. She arranges a trip to an amusement park for them and pays for them to go. She is touched by the mother cat with baby kittens who arrive at her backdoor, cold and hungry. And as the mother of our Lil Man, I see her love, dedication, passion, and care of him to reflect the same mothering attributes I felt toward our three daughters.

And due to our perseverance and God’s mercy, I am now a Grammy. Just as I promised God that I would teach my children about Him, I promised God to teach Lil Man about Him. I am blessed beyond measure as I serve with a servant’s heart as our grandson’s Nanny and am able to teach him about the God Who is my everything. He isn’t even two yet, but these are some of the baby steps toward God he has made:

--He picks up his little Bible and says, “Bible”.
--We ask him to say prayers for Grammy and he folds his hands in prayer.
--I ask him who Jesus’ Daddy is and he replies, “God”!
--When asked where does God live and he points upward and says, “Sky”.

Our family is replete with conquerors. I am thankful for those who have traveled this journey with me – family and friends. Even though I celebrate my 14th Cancerversary in the ICU today, I am very, very blessed.

John 10:10

The thief (Leukemia) does not come except to steal, and to kill, and to destroy.

I (God) have come that they (Stacie and her family) may have life, and that they may have it more abundantly.

Reflections on Forgiveness

"It is the truth that those who forgive most shall be most forgiven."
- Josiah Bailey

"Let all bitterness, wrath, and anger, and clamour, and evil speaking, be put away from you, with all malice; and ye be kind to one another, tenderhearted, forgiving one another, even as God for Christ's sake has forgiven you."
-Ephesians 4:31-32

"Those who hate you don't win unless you hate them, and then you destroy yourself."
-Richard Nixon

"I firmly believe that a great many prayers are not answered because we are not wiling to forgive someone."
-D.L.Moody

Update & Request for Prayer: August 18, 2010

I have been quite ill and have not updated my blog as I should. Due to my prayer recruiters, Tina and Dawn, I know several of you have learned of this latest bout of struggles. Thank you for praying.

THURSDAY

Ear pain resulted in ear infection. Biaxin started.

SATURDAY

Felt worse. Fevers increased and cough was productive. I suspect the return of the fungal infection when I was hospitalized in June.

SUNDAY

Cough, fever, chest congestion and my oxygen levels worsened overnight. I went to the hospital and they performed a chest x-ray, blood cultures and other labs. My doctor was out of state and she is the General of my medical team. I was determined to not be admitted with her away. I began having trouble breathing and shortness of breath.

Later Sunday evening, my doctor called much to our dismay, a staph infection was found growing in my lungs. She consulted my Infectious Disease Doctor and we returned to the hospital to begin a third antibiotic. I did not have a drug reaction and we returned home around midnight.

MONDAY

I saw my doctor and the lab managed not to provide the staph ID and sensitivities by 5 PM. It was a difficult day - I spent over 2 hours at the doctor trying to sort everything out. I had numerous calls with the insurance company and specialists.

My pulse was up to 137 on Monday evening with continued fevers and the ID Dr. was concerned about that - I was told if my pulse went higher or did not begin to decrease and if symptoms continued to worsen, they would admit me.

At five minutes before five, the insurance came through with approval for oxygen for home use.

I went to bed not feeling well and awoke with chills at 1 AM (early Tuesday morning). Chills and my related symptoms could indicate septicemia (infection in bloodstream). Kevin rushed me to the hospital at 2 AM and I was again admitted to ICU.

By early afternoon yesterday, I had been safely desensitized to IV Zyvox for the staph in my lungs and IV Tobramycin to add coverage in case my worsening is related to septicemia. The sensitivities are still not here so they could change both these drugs. Oxygen support was such a relief. I was struggling to breathe and talk, so I knew I was in trouble.

WEDNESDAY

My doctors have been in this morning. My counts are already diving due to marrow suppression worsened by infection and these powerful drugs. The Zyvox (IV antibiotic for Staph) had a warning about marrow suppressed people and Tobramycin always reduces my counts. Once again, we must weigh risks versus benefits. My WBC was 60,700 yesterday and is 38,900 today (and that decline is with IV steroids that always INCREASE my WBC). My ANC required a Neupogen injection at noon and I will continue to receive it since we expect further WBC declines. I was hoping to receive IVIG treatment tomorrow but that doesn't appear to be happening. Zyvox is infusing as I type. Once this IV is in, the Tobramycin will be started.

My Hemoglobin has fallen by 2 points with just one day of these drugs. My NIH oncologist forewarned me that blood transfusion support might be required. Infection always suppresses my marrow somewhat, so hemoglobin prayers are needed. My platelets have declined as well.

They took a urine sample overnight for culturing - not symptomatic but with ongoing fevers we cannot leave a stone unturned. Also, another sputum sample was taken for a silver stain to look for PCP again - I imagine that will be a send out lab. The lab has failed to identify the staph infection or provide drug sensitivities. Their shoddy performance is alarming to me when these results dictate life saving decisions for me.

Please pray:

-For the infection(s) to be identified and drug sensitivities to become quickly available
-For me not to require blood transfusions
-For me not to be dependent upon oxygen
-For additional infections or hospital acquired infections NOT to develop
-For me not to have drug reactions
-For God to direct all decisions made on my behalf and staffing chosen to help me
-For strength and courage for my family and me

That is the update for today. Continued prayers treasured.

Accolades

This has been a summer of accolades and recognitions for me. I have joked that usually people begin receiving such recognitions when they are about dead or are dead. I have never been focused on worldly recognition. Rather, like the Nicole Nordeman "Legacy" lyrics states: "I want to leave an offering, a child of mercy and grace who blessed Your name unapologetically. And leave that kind of legacy."

Most importantly, I want to be remembered for my steadfast faith in God Above throughout a life punctuated with much pain and many problems. I want Him to be recognized and glorified through all that I do.

Some of you might recall that I was named the "Cancer Survivor of the Year" in June. Kevin and I appeared in the national Coping with Cancer magazine (July issue) in conjunction with their Survivor Day coverage.

The nonprofit I previously directed featured a tribute to me on the front page of thier newsletter last month. And the other nonprofit where I served as Program Director has named an annual award after me that will recognize outstanding servants of the ministry.

Lastly, I submitted some of my photos to the new cancer center. They wanted to use patient photography as art in the new center. Three of my photographs were selected. The private room where I receive all of my treatments is the "Stacie Room" with my photograph on the wall and Stacie usually residing in the chemo chair!

I am thankful for the gifts and talents that God alone has given to me. I would be nothing apart from Him.

"Legacy" lyrics:

I don't mind if you've got something nice to say about me
And I enjoy an accolade like the rest
You could take my picture and hang it in a gallery
Of all who's who and so-n-so's that used to be the best
At such'n'such ... it wouldn't matter much

I won't lie, it feels alright to see your name in lights
We all need an 'Atta boy' or 'Atta girl'
But in the end I'd like to hang my hat on more besides
The temporary trappings of this world

I want to leave a legacy
How will they remember me?
Did I choose to love?
Did I point to You enough To make a mark on things?
I want to leave an offering
A child of mercy and grace who blessed your name unapologetically
And leave that kind of legacy

I don't have to look too far or too long awhile
To make a lengthy list of all that I enjoy
It's an accumulating trinket and a treasure pile
Where moth and rust, thieves and such will soon enough destroy
Not well traveled, not well read, not well-to-do or well bred
Just want to hear instead, "Well Done" good and faithful one...

An Update & Request for Prayer: August 14, 2010

I continue to run fevers and have been neutropenic this past week. I have received three Neupogen injections and they have given my neutrophils a boost. It always concerning to run fevers in the presence of neutropenia. Please pray specifically today for God to tend to any infection that might be undiscovered.

The cough continues and we are still awaiting the fungal culture results from my bronchoscopy on June 24th. Can you believe that?

My spleen continues to grow and grow and grow. It causes a great deal of discomfort and sleeping is nearly impossible.

I continue to research and ponder if/what treatment I should consider. I was leaning toward the metronomic chemotherapy (reduced doses infused 24 hours a day), however, I now believe that splenic irradiation might be more survivable. Two of my beloved and trusted oncologists have been advising me from afar about this possible option. I located a German trial using splenic irradiation with leukemia patients. I did not realize all of the biological possibilities that radiation might induce. And I am talking favorable possibilities. In this study, 22-38 percent of the patients achieved remission. That might sound like poor odds to you, but they are amazing odds for an end stage leukemia patient.

I will continue to pray for God to make the path I am to pursue crystal clear. I anticipate if I decide to treat, that we will move toward treatment by September.

Temporary

"For we know that if our earthly house, this tent, is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. For in this we groan, earnestly desiring to be clothed with our habitation which is from heaven, if indeed, having been clothed, we shall not be found naked. For we who are in this tent groan, being burdened, not because we want to be unclothed, but further clothed, that mortality may be swallowed up by life. Now He who has prepared us for this very thing is God, who also has given us the Spirit as a guarantee. So we are always confident, knowing that while we are at home in the body we are absent from the Lord. For we walk by faith, not by sight. We are confident, yes, well pleased rather to be absent from the body and to be present with the Lord" (2 Corinthians 5:1-8).

As I watch myself and so many Christians struggle against overwhelming trials and tribulations, I remind myself that we struggle on earth because this is not our home. We are lost foreigners with our true citizenship in Heaven ("For our citizenship is in heaven, from which we also eagerly wait for the Savior, the Lord Jesus Christ (Philippians 3:20). 2 Corinthians 5 presents a comparison between the temporary "tents" we reside in on earth and the lure of our eternal Home.

If asked today whether we would prefer living in a tent or a building, how would we reply? There are few, including myself, who would long to reside in a tent. Tents are temporary, they leak and break, and they are easily moved. Tents are not known for being comfortable and permanent. Conversely, buildings are permanent, not easily shaken and they offer the comforts of home that many of us experience. Paul uses this passage of Scripture to compare the body to our permanent homes in Heaven. There just is no comparison, is there?

I don't know about you, but my "tent" is not worthy of an overnight camp-out in my backyard. It is being destroyed and ravaged by cancer. Paul tells us that we "groan" in our "tents". As long as we reside in our "tents", we are "absent from the Lord" and our Heavenly destination. No wonder this life is so challenging.

Verse 8 of this passage states: ".....to be absent from the body is to be present with the Lord." I am convinced we struggle too much to maintain these earthly tents. People dread death - even Christians. Yet, when we remind ourselves of this verse, and know that once we are dead (aka absent from the body) that we are going to be present with the Lord, we can do no less than rejoice. Everyday we need to remind ourselves of this fact and then death will lose its sting and will pale in comparison to the promise of eternal life.

Lately, the Mercy Me song "Only Temporary" has been a favorite and a lyrical reminder of the teachings of this Scripture.

Don't let the situation get to you
This is not a hill worth dying on
Don't let these circumstances tear your heart in two
Soon enough this chapter will be gone

What's insurmountable today
Will surely one day fade away

CHORUS:
There's a reason why this world just don't feel right
Cause we are strangers who are simply passing by
In light of all eternity
It's only temporary

This place was never meant to be my home
Not comfortable in my own skin
Which may explain some of those days I feel alone
Standing on the outside looking in

But you're not hearing me complain
Cause I'm already on my way

This place was never meant to be my home
Not comfortable in my own skin

Link to the the music video for this song: http://www.youtube.com/watch?v=dZhCmvOhlKs

One of my life verses has been 2 Corinthians 4:16: 18: "Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal".

No matter the depth of our pain and suffering and heartache today, we are assured that these are temporary afflictions. Don't give up - on yourself or on God. Don't doubt that you can wade through your difficulties. Don't forget that despite the intensity or long lasting of our heartaches, that they are "only temporary".

An Update & Request for Prayer: August 4, 2010

I offer my apologies for the delayed update. I have pondered and prayed over this update for many days (weeks). My leukemia journey has been sliding down a precarious pathway for the past year or so. If someone had told me when I was diagnosed, 14 years ago (on this August 18th), that my disease course would be so rocky, I would not have believed it and probably would have given up years ago.

This has been a perfect example for all of us to live each day fully and not to put off until tomorrow what we should do today. I encourage each person reading my blog to live life fully and to treasure each today, no matter your circumstances.

More importantly, if there is someone reading these words and who has yet to make Jesus the Lord of his or her life, I encourage you with all of my heart to make that commitment. “For whoever calls on the name of the Lord shall be saved” (Romans 10:13). Throughout this lengthy battle, I would not have survived the stress and strains without the presence of my Heavenly Father. For the hundreds of days that I have spent in ICU, I have rejoiced for all of the times He has reached down and rescued me and blessed me with more days with those I love. Of the most importance is the knowledge that I have my eternal destination determined. Death is not final for those of us who have confessed our sins and acknowledged Jesus as the Lord and Savior of our lives. When I exhale my last breath, I will be transported in a blinking of an eye to the throne of my Father. As these earthly days become more and more challenging, my new life in Heaven gains appeal. No pain. No tears. No heartache. No suffering. I will run on streets of gold to my mansion. The heavenly voices of the angelic choir will fill my ears. The presence of God will be beyond my comprehension.

Isaiah 43:2: “When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you.”

As I pass through these waters, I am not going to be burned. Everything in my flesh is trembling and confused and at times, overwhelmed. Yet, my spirit remains steadfast. To update my blog, I will have to type many negative findings and updates. These are the opinions of mortal men and women and we must never forget that our Lord reigns and He is the God of the impossible. I will never give up on a miracle slipping down from the Heavenlies to me. If that is not His plan for me, my soul is secure and I am ready for the heavenly journey ahead. God always knows best!

Despite the ICU stay in June and subsequent 21 days of IV antifungals, in the past two weeks, I have had three positive lung cultures return (AGAIN). I continue to have a productive cough, fevers, and some shortness of breath (especially on a day like today with a heat index of 117 degrees). It is difficult to believe this, but I have had some sort of infection every day since early September 2009. That is ten months – over 300 days -- of nonstop infections. Just the infections alone and their treatment are very draining to me. Such is life with a ship-wrecked immune system.

When I battled viral and bacterial infections early in my leukemia trek, I was always told that they would be relatively simple to diagnose, treat and recover from when compared to these nasty fungal infections. I believe that wholeheartedly. I better understand why so many people die from fungal infections when I see cultures taking 4-6 weeks and sometimes longer to provide identifications and sensitivities on the cultures. We will re-culture me this week to see if other pulmonary infections have developed since I remain symptomatic.

Recently, I have had several fungal skin infections on my trunk. We have been watching a new patch of something abnormal on my right cheek. Today, my doctor did a scraping of that to determine if that is fungal in nature. We will wait ………

The leukemia beast is rearing its nasty head – I have worsening of all B-symptoms - symptoms that oncologists follow that indicate disease advancement. Night sweats, fevers, splenomegaly (spleen is over a foot long in the longest dimension and it misplaces other organs when it is this large). My liver is also enlarging (hepatomegaly). The fatigue and pain levels have diminished my quality of life. In addition to the leukemia, the IV steroids I required in the hospital caused weakening of my muscles and despite going to the gym four nights a week prior to the hospital admission, I struggle with normal daily activities.

The doctors do not believe I can survive splenectomy (surgical removal of spleen) due to my infection risks and I still cannot locate a team that will attempt low dose splenic irradiation. After reviewing 20 years’ worth of studies on leukemia and low dose splenic irradiation, I still believe that it could have value to me. But who wants to listen to me?

I have consulted with several of my leukemia specialists and the consensus is unanimous – if I do not treat the leukemia, it will kill me. If I do treat the leukemia, an infection will likely kill me. One doctor told me it is not a matter of “if” an infection will kill me, it is “when” an infection will kill me. Another trusted specialist told me, "Untreated, you are going to succumb to infection sooner or later. Treatment might kill you sooner." We are so accustomed to medical science always having an answer for our health challenges. This situation is what some would deem in earthly terms - being between a rock and a hard place.

I had a difficult time with IVIG a couple of weeks ago. Since an allergist developed my current protocol (heavy premedications and an eight-nine hour infusion), I have tolerated IVIG well. That was until last month. I was very ill during the infusion and then later that night, the infusion site developed a hive-like rash. It had to happen on a Friday night when my three main physicians had all left on vacation! I spent the night popping steroids and Benadryl and applying prescription strength steroid cream to the rash and lo and behold, Dr. Stacie had it taken care of before the sun rose the next morning. We are trying to determine if the Opsite material that covered the IV site contained latex. If I am developing a latex allergy then we need to determine this.

I have a plan for today – notice I type “I”. I still need additional prayer about this plan as I am not 100 percent certain that all of the details are in line with God’s plan and I do not want to step outside of His direction for my life. My consultation today with my trusted family physician helped me to finalize some of the outline of this plan. I want God-breathed details and guidance to fill in the blanks of my outline. I am going to attempt – if I can secure some help – to return to the strict protocol I was following prior to my hospital admission. It is exhausting to coordinate the strict dietary guidelines, exercise, supplements, etc. and is something I cannot do on my own. My doctor went as far to say that even if I must hire someone to help me, this is about saving my life and that is what I will have to do. This protocol is from the Integrative Cancer Center I visited in Chicago in April. My family doctor believes I need to focus on regaining strength and supporting my fractured immune system. My CD4 T-Cell counts are lower than an AIDS patient right now and that opens an entirely new can of worms for me with regard to infection risks. I recently read in the Christian magazine, Charisma, an article about a missionary’s work with AIDS patients in Africa. They had seen increased CD4 T-Cell counts in these patients as they administered a product containing sea minerals and other natural products. I am trying to track down this missionary and the product to inquire if I can obtain it in the States and if he believes it will help non-AIDS patients who have T-Cell defects. Reversing my spiraling trend of falling T-Cells would be of great benefit to me and would result in fewer life threatening infections.

I had been considering an European protocol that used low dose chemotherapy agents Fludarabine and Cytoxan with elderly leukemia patients who were too weak for standard treatment. Most faired extremely well on the protocol and I had even discussed it with the Italian trial investigator. However, once we learned of the very low T-Cell count (and knowing that Fludarabine is the ultimate enemy of T-Cells), I have had to stop and reconsider that protocol. The Cancer Center in Chicago discussed fractionated chemotherapy with me. This is used in other countries and uses doses as low as 1/5 of the standard dosage of chemotherapy to treat end stage patients. Some protocols infuse the drugs with a pump over many days versus over a few hours to help limit toxicities. Makes perfect sense to me.

This has appeal to me and seems quite sensible. Yet, I am all too familiar with the inflexibilities of the USA’s medical system and insurance companies. Once I decide upon which chemotherapy agent I might consider using in fractionated doses, then I have the task to convince doctors and the insurance “gods” to orchestrate and pay for the protocol. So much to accomplish and so little stamina to do it!

The Mercy Me song “Hold Fast” has offered immense encouragement to me this summer. The lyrics remind us:

To everyone who's hurting To those who've had enough To all the undeserving That should cover all of us Please do not let go I promise there is hope

Hold fast
Help is on the way
Hold fast
He's come to save the day
What I've learned in my life
One thing greater than my strife
Is His grasp So hold fast

Will this season ever pass?
Can we stop this ride?
Will we see the sun at last?
Or could this be our lot in life?
Please do not let go
I promise you there's hope

You may think you're all alone
And there's no way that anyone could know
What you're going through
But if you only hear one thing
Just understand that we are all the same
Searching for the truth
The truth of what we're soon to face
Unless someone comes to take our place
Is there anyone?
All we want is to be free
Free from our captivity,
Lord Here He comes

You Tube Video Link: http://www.youtube.com/watch?v=uWejcH0JWTc

So, I am holding fast. For my family and friends who read this, who might shed a tear for me, let me encourage you that we are not alone. God remains very near to each of His children even when the day is the darkest and our hearts are the most troubled. Hold fast, my dear ones, hold fast.

(And thank you so much for your prayers and encouraging posts!)