Tuesday, March 31, 2009

Spring has Sprung





Photograph copyright Stacie

Monday, March 30, 2009

Daffodils

"Daffodils"
by William Wordsworth

I wandered lonely as a cloud
That floats on high o'er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.

Continuous as the stars that shine
And twinkle on the milky way,
They stretched in never-ending line
Along the margin of a bay:
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.

The waves beside them danced, but they
Out-did the sparkling leaves in glee;
A poet could not be but gay,
In such a jocund company!
I gazed—and gazed—but little thought
What wealth the show to me had brought:

For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.






Daffodils are one of my favorite signs of spring. Yesterday, I captured with my camera, some daring daffodils, standing strong against freezing temperatures and raging winds.

Photograph copyright Stacie

Update & Prayer Requests: March 30, 2009

Praises for today:

1. The sensitivities returned for the second fungal infection (Penicillium). This mold is the same one used to make gorgonzola cheese. Amazing, it can do so much harm to me and all the rest of you are consuming it!

2. God truly intervened 3 weeks ago when my doctor had to select (without sensitivities) what drugs we should use to treat the infection. She selected the IV Micafungin and liquid Posaconazole. Today's sensitivities returned from the U of Texas and guess what the top two most sensitive drugs were to treat the Penicillium infection? You guessed it -- under the guidance of the Holy Spirit, God knew far ahead of what scientists would determine today, and the best drug choices are the very two I have been taking for the three weeks we have awaited the sensitivity reports. Thanks, God, for being my Physician and Protector who walks closely beside me.

Prayer Requests:

1. We are awaiting my lab reports from today to determine if the Neupogen is working and if I am no longer neutropenic. Please pray for my counts to improve.
2. Please pray that all goes well for my IVIG treatment which I will have on Wednesday.
3. Please pray for protection on our upcoming trip to Ohio State and for God to direct Dr. Byrd's recommendations for me.
4. Please pray for my strength and stamina. I am very weak and still losing weight.
5. The prognostic indicator for the leukemia that was run last week, returned with the highest level I have ever had (higher level meaning worse prognostics). Please pray this was a fluke and for this level to decrease.

CHFA - Congenital Heart Futures Act

Our oldest daughter was born with a ventricular septal heart defect. She weighed just over 3 pounds when she was born and is a part of the first generation of babies to survive congenital heart defects to adulthood. More research and follow-up of adults living with congenital heart disease (CHD) is needed.

Currently, there is a piece of legislation being presented, that our family asks you to support. This piece of legislation will allocate increased federal funding for the research in ADULT congenital heart disease through the National, Heart, Lung, and Blood Institute (NHLBI). It will also allow for funding to create a National Congenital Heart Disease (CHD) Registry that will allow researchers to follow infants born with heart defects who survive into adulthood-such as our daughter. There are several more areas in which this Act will allocate funds but these are the primary ones.

It is with immense excitement that I can say the Congenital Heart Futures Act was introduced on the Senate and House floors 2 weeks ago (bipartisan sides) on Capitol Hill by Senator Dick Durbin (D-IL). There is now Senate support and House support (both Democratic and Republican) for this Bill. It was given a bill number today and is moving forward very rapidly! For it is THIS bill that will provide the funding and research on treatments that will, more than likely, directly affect the life of our daughter and so many others…her future and many others who live with the complications of heart defects.

We have 20 states co-sponsoring this bill but would still like to see the other 30 states as a Co-Sponsor. If those of you who live in a different state from myself would like to email your Senators or Representatives requesting Co-Sponsorship of this bill-let me know. For the Congenital Heart Futures Act to become a LAW it MUST have majority support in House and Senate.

Below is the link on further information regarding the CHFA and the introduction of this Bill.

http://durbin.senate.gov/showRelease.cfm?releaseId=309944

Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House. It just takes a minute - here's how you do it:

1) Go to http://www.senate.gov and http://www.house.gov/ to look up your representatives and their email addresses
2) Draft your email - Here is a template to get you started.

3) Make your letter personal to you. The attached template has a place to add two or three sentences about why this legislation matters to you personally, and offers some samples to help get you started.

4) Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.

That's all there is to it!

If you are a constituent of Senators Durbin or Cochran or Representatives Space and Bilirakis, we encourage you to email or call their office and let them know how much you appreciate their leadership of this effort.

THANK YOU!

Saturday, March 28, 2009

An Update & Request for Prayer: March 28, 2009

A quick update ........

-After much confusion and difficulty, I received the Neupogen treatments I need for the return of neutropenia (low neutrophil counts that contribute to more infections).
-I have continued on the daily IV antifungal treatments. My veins are in horrific condition. I need them to be quickly restored.
-The sensitivities for the second fungal infection were not ready on Friday, as we had hoped. Therefore, it will be early next week before we know if medication changes need to occur.
- I am scheduled for my all day IVIG treatment on this coming Wednesday (not certain how I will receive both IV's if the IV antifungals are still being administered).
-I am scheduled to return to Ohio State to see my oncologist there the week after next.
-We are facing major decisions in the next couple of weeks.
-I need strength and stamina to return.

PLEASE PRAY!

Don't Worry 'Bout Me

I recently heard Alan Jackson's song, "Sissy's Song" - it brought tears to my heart and a message to my ears that I hope my family remembers when I die -- you don't need to worry about me. And I don't want to have to worry about any of you when you die -- make sure your hearts are ready and you have accepted Christ as your Savior and Forgiver of sins. It is all that truly matters in this short time spent on earth.

Watch the video at: http://www.youtube.com/watch?v=M1eLe52EH8k&feature=related

Why did she have to go
So young I just don't know why
Things happen half the time
Without reason without rhyme
Lovely, sweet young woman
Daughter, wife and mother
Makes no sense to me
I just have to believe
She flew up to Heaven on the wings of angels
By the clouds and stars and passed where no one sees
And she walks with Jesus and her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me

Loved ones she left behind
Just trying to survive
And understand the why
Feeling so lost inside
Anger shot straight at God
Then asking for His love
Empty with disbelief
Just hoping that maybe
She flew up to Heaven on the wings of angels
By the clouds and stars and passed where no one sees
And she walks with Jesus and her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me

It's hard to say goodbye
Her picture in my mind
Will always be of times I'll cherish
And I won't cry 'cause
She flew up to Heaven on the wings of angels
By the clouds and stars and passed where no one sees
And she walks with Jesus and her loved ones waiting
And I know she's smiling saying
Don't worry 'bout me
Don't worry 'bout me
Don't worry 'bout me

It Won't Be Like This For Long

This Darius Rucker song made me reflect on how quickly our three baby girls grew up. Treasure each moment with your young children while they are with you.

Watch the video at:
http://www.youtube.com/watch?v=Z6JHXHWZLpU&feature=related

He didn't have to wake up
He'd been up all nite
Lay'n there in bed listen'n
To his new born baby cry
He makes a pot of coffee
He splashes water on his face
His wife gives him a kiss and saysIt gonna be OK
It wont be like this for long
One day soon we'll look back laugh'n
At the week we brought her home
This phase is gonna fly by
So baby just hold onIt won't be like this for long

Four years later bout four thirty
She's crawling in their bed
And when he drops her off at preschool
She's clinging to his leg
The teacher peels her off of him
He says what can I do
She says now don't you worry
This will only last a week or two
It wont be like this for long
One day soon we'll drop her off
And she wont even know you're gone
This phase is gonna fly by
If you can just hold onIt wont be like this for long

One day soon she'll be a teenager
And at times you'll think she hates him
Then he'll walk her down the aisle
And he'll raise her veil
But right now she's up and cry'n
And the truth is that he don't mind
As he kisses her good night
And she says her prayers
He lays down there beside her
Till her eyes are finally closed
And just watch'n her it breaks his heart
Cause he already knows
It wont be like this for long
One day soon that little girl is gonna be
All grown up and gone
Yeah this phase is gonna fly by
He's try'n to hold on
It wont be like this for long
It wont be like this for long

Thursday, March 26, 2009

A Spoonful of Sugar Helps the Medicine Go Down

The catchy tune "A Spoonful of Sugar Helps the Medicine Go Down", from Mary Poppins, runs through my mind some days. And I think about the spoonful of "sugar" that helps all of my medicines go down. That sugar is also known as our grandson, Lil Man. My days are filled with IV's, needles, medicines that make me feel worse than the problems they are treating, leukemia infiltrating my bone marrow, and infections threatening to invade my body.

Yet in the midst of the difficult days I am trudging through, a bright, gummy grin embraces my heart. Lil Man is sugary sweet and no matter the health challenge I am facing or the medicine I am taking, my little "sugar" helps it all go down much easier. I know that if I give up and give in right now (and that is such a temptation when living in a broken body), that he will not remember me. Another dose of "sugar" is the perfect remedy for each and every prescription medication thrown at an infection or the leukemia.

Thus, I take my daily dose of Lil Man along with medications molded by researchers' hands -- all in an effort to overcome and rise above menacing health challenges. Lil Man, my daughters, my family spur me on when the days are dark and the suffering is swallowing up my life.

Thanks to all of my spoonfuls of sugar .........

My Prayer for Today: March 26, 2009

Precious Father,

I echo the words of this chorus this morning:

I love you, Lord
And I lift my voice,
To worship You
O my soul rejoices
Take joy, my King,
In what You hear,
May it be a sweet, sweet sound in Your ear.

May each of us continue to praise You and worship You, even in the dark, trying days. May we never forget that You are the Lord of our lives and are worthy of every praise our lips can utter.

Forgive us, Father, for when we stumble and fall. You know our weaknesses. Undergird us with strength to overcome temptation and remind us to repent when we fail in our daily walks.

I thank you for the perfect peace that only You can give to each of us. The peace of God is a priceless gift. Continue to bless each of us with Your peace that passes all understanding.

I love You and praise You, Lord.
In Jesus’ Mighty Name I pray. Amen.

Tuesday, March 24, 2009

Update: March 24, 2009

(From Last Night): SORRY FOR ALL CAPS -- TYPING ONE HANDED WITH NON-DOMINANT HAND. MY IV IS RUNNING. WENT TO DR.'S OFFICE FOR BLOOD DRAW AND HOPEFULLY AN IV LINE TO BRING HOME. AFTER THREE STICKS, WE DID HAVE MY BLOOD FOR LABS BUT NO IV. OUR DAUGHTER CAME UP AND HIT ON THE FIRST TRY! THEN IT CLOTTED OFF BUT SHE WORKED AND WORKED AND HAS IT WORKING AGAIN. PLEASE PRAY IT WILL HOLD OUT FOR US.

THE SECOND FUNGAL CULTURE HAS BEEN IDENTIFIED - WE CAN'T BELIEVE BUT IT IS AN ENTIRELY DIFFERENT MOLD FROM S.BRUMPTII THAT WAS IDENTIFIED EARLIER. NOW PENICILLIUM HAS BEEN IDENTIFIED. WE SHOULD HAVE SENSITIVITIES BY THURSDAY OR FRIDAY AND WILL ADJUST MEDICATIONS THEN. TO UPDATE, THAT MAKES TWO FUNGAL AND ONE BACTERIAL INFECTION THAT I AM BATTLING.

We made it through the IV (only 4 sticks tonight - 3 at the doctor's office and the miracle vein that our daughter found!) My doctor is concerned that we are dealing with two fungi -- she really anticipated that this second positive fungal culture would show S. Brumptii like the first positive fungal culture. All things are possible. I am trusting that some of these medicines will be effective. However, there is a chance that I will have to be desensitized, yet again, to another medication or two. My family doctor just wrote -- liver enzymes were increased more and WBC, HGB, and platelets all dropped. We are still awaiting the differential to calculate my ANC to see if I need Neupogen.

(From Today): Praise for today - I am not neutropenic and do not require Neupogen! One of my nurse daughter's classmates, is driving 50 miles to our home tonight to help our daughter try to locate a new, fresh vein that might hold up for 2-3 days of infusions. I am so grateful for her classmates - several of them came and took care of me in ICU on numerous occasions. We are concerned because our daughter returns to Indianapolis to the hospital where she works on Thursday and Friday this week, so she will not be close by to help me as she has been doing nightly.

Monday, March 23, 2009

IV IQ Contest

Last night I had six veins collapse and/or infiltrate. It was terribly difficult on our oldest daughter (the nurse) who had to keep re-sticking me. I went to bed at 2 AM, having only received about 1/3 of the IV medication.

Since the IV challenge is escalating daily, I have decided to open an IV IQ Contest on my blog. To enter, simply post (by going to comments on my blog) your idea for making the IV work or other (atypical) means of taking this IV medication. Perhaps, you know a secret tip for making IV's successful in someone who has veins that run away when a needle approaches. One friend mentioned soaking in it, much like a bubble bath to absorb it. Last night, I actually told my husband I was ready for him to cut open the IV bag and I would just drink it. No one supported that plan of a desperate, vein-less patient.

The winner of today's contest will receive this prize: one day in the IV chair to take one of my treatments! Let's see your creativity, folks. The prize is taxable and must be reported on your income taxes, if you are the winner.

Disclaimer: These recommendations might be hazardous to my health.

Sunday, March 22, 2009

I Will Lift My Eyes

My friend, who is a missionary in Costa Rica, sent me this link today to the song "I Will Lift My Eyes" by Bebo Norman. Its lyrics were a timely, poignant reminder to me.

http://www.youtube.com/watch?v=Te0hy2YcLgg

These lyrics caused me to reflect on the words of the twenty-first Psalm:

I will lift up my eyes to the hills—
From whence comes my help?
My help comes from the LORD,
Who made heaven and earth.
He will not allow your foot to be moved;
He who keeps you will not slumber.
Behold, He who keeps Israel
Shall neither slumber nor sleep.
The LORD is your keeper;
The LORD is your shade at your right hand.
The sun shall not strike you by day,
Nor the moon by night.
The LORD shall preserve you from all evil;
He shall preserve your soul.
The LORD shall preserve your going out and your coming in
From this time forth, and even forevermore.

The "H" Word

The dictionary is bursting with words that began with the letter "H". Many of these words are ones which I would love to have attached to myself. Words such as Healthy, Happy, Healed, and Hopeful. This week I had a head-on collision with an "H Word" that I rather would have averted. The encounter with this specific "H Word" sent a shiver down my spine and startled my spirit.

When my husband picked up some IV medication, earlier last week, there was a label attached to the sack in which the medicine was packed. That label read: "Stacie - HOSPICE". That is the "H Word" I have been detailing - HOSPICE.

For those of you unfamiliar with Hospice, it is supportive care that is given to people who enter their final phase of a terminal illness. The care no longer focuses on curing or treating the terminal disease, such as cancer, instead it provides supportive care to make the person comfortable.

With all of the turmoil and transitions in my medical care these past two weeks, I cannot say I was shocked to digest the possibility that my care was being shifted to Hospice. Nevertheless, I was terribly troubled by this consideration. On several attempts, I tried to muster the gumption to contact my trusted family physician to see what she knew about this transition. Each time I tried to e-mail or call her, my fortitude failed. I knew by making this one phone call or sending this one probing e-mail, this "H Word" could be verified as now being a part of my diagnosis and future.

As days passed, the Holy Spirit began to reassure me. God's Word overruled the fear that the "H Word" had deposited in my mind and heart. I returned to a place of peace, knowing that "all things work together for good for those who love the Lord and are called according to His purpose". Slowly, methodically, God helped me to realize that the label, HOSPICE, that mortal man had attempted to stamp on my life, had no meaning to a God greater than any label or condition.

After all, I have gone a few years without treating and targeting the leukemia. Instead, I have been trusting and asking God for long life. My doctor has been providing supportive care -- immunoglobulin treatments to support my fractured immune system; Neupogen injections to support my bone marrow function; acupuncture to assist with my pain; the "anti's" (antibiotics, antivirals, and antifungals) to support me during time of infections; and alternative treatments that have assisted with sustaining my life in the presence of bone marrow infiltrated with 98 percent leukemia.

No matter the labels or the diagnoses that mortal man will attach to my life or my medical file, I am not going to die. Certainly, my fleshly tent of a body, will breathe a final breath one day, however, at that very second, I will begin living my eternal, healed life in Heaven. I shall not die but live!

In closing, I return to one of my favorite Scriptures:

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."

Saturday, March 21, 2009

Update & Prayer Request: March 21, 2009

Day 10 of the IV antifungals was infused at the hospital last night. I went to the IV Infusion Room and it was full of people (it is supposed to close at 5, when I have been scheduled, to keep me away from other patients). I looked at the nurse and she gave me a knowing acknowledgment. I sat down and she left the room. The woman next to me began coughing and tells me she has pneumonia. WHAT? I picked up my bags and walked out.

The nurse returned and I told her I would bypass my IV versus sitting in that room. She arranged for me to be put in a semi-private room with an elderly woman (non-contagious).

Today, I am making the transition back to at-home IV's. All of the IV supplies and medication arrived yesterday. I am still awaiting final culture ID and sensitivities to see if we are on track with these two antifungals selected by the infectious disease doctor and trusted family physician.. I am currently hooked up to the IV, in my pajamas, with my favorite quilt and laptop, all under the watchful eye of my oldest daughter (nurse).

I am very weak and need strength and stamina to return. Labs will be repeated on Monday, so please pray for these results. I am facing some difficult decisions this week, so I need discernment and guidance to make the right choices for myself.

Mighty to Save

A new favorite song of mine ......

http://www.youtube.com/watch?v=pYqogpLpC5Q

MIGHTY TO SAVE
by Laura Story

Everyone needs compassion
A love that's never failing
Let mercy fall on me
Everyone needs forgiveness
A kindness of a Savior
The hope of nations

Savior, He can move the mountains
My God is Mighty to save
He is Mighty to save
Forever
Author of salvation
He rose and conquered the grave
Jesus conquered the grave

So take me as You find me
All my fears and failures
Fill my life again
I give my life to follow
Everything I believe in
Now I surrender
Yeah I surrender
Shine your light and let the whole world see

We're singing for the glory of the risen King...Jesus

Thursday, March 19, 2009

Update & Prayer Request: March 19, 2009

Just home from the hospital and my IV antifungal treatment. The insurance case manager called as I was leaving for the hospital and it appears that the move back to home healthcare will happen on Saturday.

Praises for today: my platelets increased to 126,000 (still low but improved)! My hemoglobin is 11.1 (it has been awhile since it has been over 11 and while still low, I am excited about a hemoglobin of 11)! And I am not neutropenic, so no need for Neupogen tomorrow!

My temperature was up more today but I did feel a little better today. My liver enzymes had increased, so please pray for protection of my liver from these medicines. Also, my white blood count jumped by 30,000 to 140,000 (normal range is 5000-10,000) since Monday. I cannot figure that out since if the infection was resolving, the WBC should decline and these two antifungals both have side effects of dropping the WBC. So I am a bit perplexed about that increase.

Thank you for your continued prayers and encouragements. All of us will be great neighbors in Heaven one day! (I will have to bake all of you alot of cookies and deliver them to your Heavenly mansions, to repay all of your kindness to me).

PS - Please pray for a fellow Christian who received a cancer diagnosis this week. Please pray for healing, recovery, and comfort and peace for his family. Please pray for discernment for his physicians. God knows who he is because he belongs to Him.

A Prayer for Today: March 19, 2009

Dear Heavenly Father,

Praise the Lord! For it is good to sing praises to our God; for it is pleasant and praise is beautiful (Psalm 147). It is a privilege to present our praises to You, Lord. In the darkest hours, always remind us to praise You. The garment of praise will always lift the spirit of heaviness from our hearts.

Forgive us, Father, for we have sinned. We know that we can never live perfect lives and that we will fail You. Yet we rejoice today, knowing that You are always willing to forgive us when we are repentant. Forgive our thoughts, words, and actions that have not lived up to Your standards for Your children. Cleanse us, O Lord and make us pure.

Our hearts are concerned for Dr. Hamblin. We lift him and his family to You, Lord. You know precisely what they are in need of at this moment. If it be healing, relief from pain, comfort, encouragement, hope, or joy, we ask that you provide their specific needs. He has been a faithful, generous servant and has helped so many people, I know that You are near to Him and able to meet all his needs “according to Your glorious riches in Christ Jesus”.

Bring closure and elimination of these serious infections I am battling. We ask Your protection and healing over the lives of all of our family members. Grant them strength as they walk this battle with me. Open the eyes of our nation, so that Your truth is revealed in the midst of much deception.

I rejoice that in the midst of our most challenging life events, You are nearby. You understand when we tremble with fear or have concerns during the night. You break the chains that try to imprison us. You bring joy in the midst of the storms of life. You are ever present and ever faithful. Thank You for being our Savior.

In Jesus’ Name I pray and believe. Amen.

Wednesday, March 18, 2009

My Tears

God has a bottle and a book for His people's tears.
What was sown as a tear will come up as a pearl.


--Matthew Henry

IV Treatment Countdown


Tuesday, March 17, 2009

A Prayer for Today

Tend your sick ones, O Lord Christ.
Rest your weary ones.
Bless your dying ones.
Soothe your suffering ones.
Pity your afflicted ones.
Shield your joyous ones.
And all for your love's sake.
Amen.


--Saint Augustine

My How Things Change

Since my last post earlier this morning, much has changed.

Just heard from APRIA - who was to supply the medicine, IV supplies, pump, etc. They say ANTHEM BLUE CROSS BLUE SHIELD'S reimbursement is too low so they won't provide the supplies I need (I have been told that the oncologist and Apria are acting illegally to deny care to me while under contract to accept payment from ANTHEM). I am trying to find an attorney to help us sort this out and obtain the life-saving care that I need.

So, now I have to go to the hospital everyday for the treatments, and you all know what risks that pose to me.

Please, please, please -- prepare yourselves for these battles while you are still well enough to fight them. If you think you are insured, you might think again. Insurance doesn't seem to matter in this economy because if a healthcare provider doesn't deem the insurance reimbursement acceptable, they just deny you care.

My husband even offered to pay cash to the oncologist to make up the difference each day and they said that would be illegal.

If anyone has leads for attorneys that help cancer patients, please e-mail the information to Tina or myself. If I don't fight through this now, they will keep denying care to the point, I will lay in my bed and die, waiting for the appropriate medications and care that my very sick body is demanding.

Prayer Request & Update: March 17, 2009

Much has transpired since my last update. The oncologists' office elected, midway through this cycle of treatment, to not perform my infusions at their infusion center. This has created much stress, confusion, and expense (we will pay out almost $1400 for this decision). Home healthcare has been an absolute disaster. The nurse arrived last night (after we had gone to the hospital and purchased the IV medication). She did not even have a needle to start the IV, a pump, anything. Supposedly, another supplier (who never delivered) is to provide all equipment. Fortunately, our oldest daughter who is working toward her Nurse Practitioner degree and who has a Bachelors Degree in Nursing was here. I had a bag of lab drawing supplies, so we used the butterfly needles from that to improvise. I blew out 4 veins and we relented and used the vein in the bend of my elbow (impossible to keep for three days, as was the home healthcare plan).

I don't know what we would have done without our "Nurse Daughter". She had an older professor in nursing school who had taught her to calculate drip rates and to do IV's without an IV pump. With her calculations and only regulating the number of drips, she completed my IV within 10 minutes of the IV's running on a pump. She said, at the time the professor made her learn that, all of her class was upset and said, "We don't need to learn this in the world with IV Pumps!" She is going to e-mail and thank that professor today for teaching her this skill!

I finished with the IV about 10:30 last night. Our daughter splinted my arm and wrapped it in an attempt to preserve the IV In the arm for today. Unfortunately, I awoke in pain this morning and knew the IV was in jeopardy. Since it was in my right arm, I only had my left arm (and I am dominantly right handed) to try to flush the IV, see if I could get a blood return, etc. I had no blood return, so I knew it was bad. So with my one left hand, I unwrapped the IV and took it out of myself this morning. (Not receiving IV's at the infusion center is a definite BAD IDEA, but I have no other option at this time except to be admitted to the hospital -- which is even a WORSE idea.)

My kidney and liver functions are normal! So that is my praise for today since both of these powerful medications have the potential to harm kidneys and the liver. Please keep praying for God's protection over these organs and my heart. My hemoglobin and platelets remained in my "normal, albeit low" ranges. This is also a praise that the medications have not caused dangerous drops in these counts. The only count a bit concerning is my neutrophil count and it had dropped by 30 percent since Friday. We will watch this closely to see if I need another Neupogen injection.

We are still awaiting the final identification and sensitivities for this second fungal infection. After all we have gone through to obtain the $6000 liquid medicine Pozaconazole and these IV's, could be in vain if the ID and sensitivities show other medicines would be more effective.

I continue on the Tobramycin sinus irrigations six times a day along with the antibiotic Augmentin, since I also have a bacterial infection.

The nausea and diarrhea have improved the last day or so. I know if I could get re-hydrated, my veins would cooperate better for the IV's. I broke my thermometer, so haven't been able to check my temperature. I need to get a new thermometer as I closely watch temperature as an indicator if the medications are working.

My friend Terri was with me all day yesterday. She comes to help me a couple days a month. I told her she had to go beyond the call of duty yesterday -- she was the administer of the sinus medication (nurse); she prepared dinner for us (personal chef); she helped me with the baby (nanny); she walked the dog (pet sitter); and cleaned my house! Now that is some multi-tasking.

Please pray:
-For quick, accurate culture ID's and sensitivities to become available quickly;
-For God to strengthen me as I am weak and weary;for Him to give strength to my family as I know they are weary of this long battle with me;
-For these medications to be orchestrating a major eviction of all dangerous organisms from my body;
-For discernment for me as I determine new options to receive IV's and treatments;
-For my vein access to improve so I won't have to have 3-5 IV sticks a day;
-For me not to have a drug reaction while at home without medical personnel;
-For me to be completely healed of infection and leukemia.

I appreciate your prayers and e-mail encouragements.

Saturday, March 14, 2009

Update: March 14, 2009

There is not much to update today. I received the IV antifungal treatment at the oncologist's office today. He had the chest x-ray reread since I am still coughing and there were no infiltrates of pneumonia but some possible signs of COPD (probably from chronic infection) the doctor surmised.

I am still having trouble with stomach upset from the medications and I was dehydrated today. The nurse had a difficult time starting the IV and I blew out three veins. I am trying to drink more tonight to avoid that scenario tomorrow.

I will have labwork done Monday to check my liver, kidneys and blood counts. Please pray specifically for my blood counts to be able to maintain themselves since these medications can cause declines in red counts, platelets, and neutrophils.

Friday, March 13, 2009

Confident Expectation

I believe God knows me far better than anyone else. He knows my thoughts, my ways, my moods, my needs, and my hopes. Today, I know that He is aware that my mind is clouded and confused from medication overload. And in His infinite wisdom, if He wanted to breathe a God-Word into my spirit, He probably knew that He would have to speak LOUD AND CLEAR for me to comprehend today. He might even repeat Himself, to be certain that I was listening.

When I opened my e-mails this evening, I had two e-mails, from two different people, with the exact same message.

Alan and Mary wrote:
Hold on to His hope! (confident expectation)

and Tina wrote:

I am hoping (confidently expecting) that this will work in a miraculous way for you.

God wants us to have faith and believe for the impossible to transpire before our very eyes. And when we have hope -- as these messages stated today -- we are "confidently expecting". Tonight, I ask those of you who believe and pray, to be hopeful with me and for me -- let us be "confidently expecting" for God to turn around a dire situation.

Hope walks hand and hand with faith and love in the Bible. This trio portrays the Christian walk like no other. May we portray these triplet traits in all that we do, say and think.

Prayer Request & Update: March 13, 2009

Dear Ones,

Thank you for your many prayers, words of encouragement and for sharing my requests with others who will believe, agree, and pray with us.

Today was Day 3 of the IV antifungal. I still have a temperature. The medications are causing diarrhea and my cough worsened today. After I finished the IV today, the oncologist sent me for a chest x-ray. I rejoice that I have learned it was clear. Thank You, Lord.

My body is very weak. The side effects of these antifungals are nearly unbearable and most of you know how many medicines I have taken over the past 12 years. I am not a medication wimp. Yet these two throw powerful punches and are trying to bring me down for the count.

There are many concerns and battles going on between doctors, my insurance company, and other details that I will leave between God and me. I need Him to iron out the complicating details for me. He knows the care and treatment I need, so I must trust Him to provide it for me.

Alan and Mary sent me this verse today. It spoke loudly to my soul.

"Then your light will break out like the dawn, and your recovery will speedily spring forth; and your righteousness will go before you; the glory of the Lord will be your rear guard.

"Then you will call, and the Lord will answer; you will cry, and He will say,'Here I am.

"And the Lord will continually guide you, and satisfy your desire in scorched places, and give strength to your bones; and you will be like a watered garden, and like a spring of water whose waters do not fail.

"Those from among you will rebuild the ancient ruins; you will raise up the age-old foundations; and you will be called the repairer of the breach, the restorer of the streets in which to dwell."

Isaiah 58:8-9, 11-12

A Good Soldier

I have tossed and turned all night. My body is rebelling against infection, leukemia and multiple drug reactions from powerful drugs. These medications that have been added to fight the fungal infection are proving to be more difficult to take than any chemotherapy I have taken. The oral medication feels like liquid fire as it pours down my throat. All night I have remained in a constant state of nausea and malaise. The battles rage inside my armor of skin. Medicinal bullets fire away at the fungal enemy. As the enemy is targeted and killed, the death of fungal cells emits confusion and chaos. War has been declared against these invaders. As they taunt and tease and threaten my life, I have been reminded overnight that I must re-equip for this battle. It is a battle far too great for my flesh to fight.

I receive a daily e-mail and today's arrived a short while ago. What an appropriate reminder for me. Gloria Copeland writes:

"Endure hardness, as a good soldier of Jesus Christ."
(2 Timothy 2:3)


Times of hardness are inevitable. You need to know that. It's true that we've been redeemed from the curse, and there's nothing Satan can do to reverse that, but he is going to challenge you on it.

So don't be surprised when things get tough. Times will come when you have to stand strictly by faith, when you'll have to speak and act as though what God says is true even when you can't feel it or see it happening around you. There will be times when everything looks terrible. That's when you must endure hardness as a good soldier.

Let me warn you, living by faith is not something you try. It's a lifestyle. You do it when it's hard. You do it when it's easy. You do it all the time because you're not doing it just to get in on the benefits. You're doing it because you know that faith pleases God (Heb. 11:6).

Things may get a little rough at times, but let me assure you, you'll always come out on top if you endure hardness as a good soldier. If you refuse to faint and fall away, you will have the victory. The only defeated Christian is the one who quits!


After reading this and realizing that I am going to have to outfit myself for this life battle, like no other, I noticed the Verse of the Day on my Blog:

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” (Romans 8:28)

As I prepare myself to battle as the "good soldier", I have been given the second memorandum that ALL of this, somehow, someway, is going to work together for good. God's Word promises me that. I cannot fathom with my own logic how this will work together for good, yet I will trust with my spirit that His Word is the Ultimate Authority on everything and It is true.

I am a victor. I am a conqueror. Tonight nothing in my fleshly armor feels victorious. My senses report to my brain that I am far from a conqueror in this battle. My senses report that the enemy has surrounded me, hemmed me in all sides, and has left me little room to escape. However, I cannot and will not rely on my senses to determine my destiny. I will leave my future in God's Hands. His hands are the only ones that I trust.

Romans 8:37-39 reports the final outcome of this battle. I am a conqueror, a vanquisher.

"No, in all these things,we are more than conquerors him who loved us. For I am convinced that neither death nor life, neither angels nor demons,neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord."

Thursday, March 12, 2009

A Brief Update: March 12, 2009

I feel badly and am very, very exhausted. I had several e-mails and comments from some of you wanting an update. I was at the oncologists' infusion center from 9:15 to 2:30 today. I had my first full dose of the IV antifungal and my first dose of the oral Posaconazole antifungal (the liquid gold product that is costing over $6000 per month). With the Posaconazole, I had blurred vision and my mouth became very warm. These concerns repeated tonight with the second dose. I am so heavily medicated that I detest this feeling - I treasure a clear thinking mind. I don't have time or patience for a fuzzy, drug clouded mind. Why anyone would ever decide to use illegal drugs is beyond my wildest imagination? I hate feeling like this. The medications are in control of my thinking and actions.

I am still running a temperature. The new fungal sample should have arrived at MD Anderson in Texas sometime today. Please pray that the financial details can be arranged for me to receive the treatment at the same location on weekends. I do not want to go to the germy hospital on weekends. Please pray for the infection to begin quickly resolving and for all of my major organs to be protected from all of these powerful medications.

My prayer for tonight .... Psalm 91

Psalm 91
1 HE WHO [a]dwells in the secret place of the Most High shall remain stable and fixed under the shadow of the Almighty [Whose power no foe can withstand].

2 I will say of the Lord, He is my Refuge and my Fortress, my God; on Him I lean and rely, and in Him I [confidently] trust!

3 For [then] He will deliver you from the snare of the fowler and from the deadly pestilence.

4 [Then] He will cover you with His pinions, and under His wings shall you trust and find refuge; His truth and His faithfulness are a shield and a buckler.

5 You shall not be afraid of the terror of the night, nor of the arrow (the evil plots and slanders of the wicked) that flies by day,

6 Nor of the pestilence that stalks in darkness, nor of the destruction and sudden death that surprise and lay waste at noonday.

7 A thousand may fall at your side, and ten thousand at your right hand, but it shall not come near you.

8 Only a spectator shall you be [yourself inaccessible in the secret place of the Most High] as you witness the reward of the wicked.

9 Because you have made the Lord your refuge, and the Most High your dwelling place,(A)

10 There shall no evil befall you, nor any plague or calamity come near your tent.

11 For He will give His angels [especial] charge over you to accompany and defend and preserve you in all your ways [of obedience and service].

12 They shall bear you up on their hands, lest you dash your foot against a stone.(B)

13 You shall tread upon the lion and adder; the young lion and the serpent shall you trample underfoot.(C)

14 Because he has set his love upon Me, therefore will I deliver him; I will set him on high, because he knows and understands My name [has a personal knowledge of My mercy, love, and kindness--trusts and relies on Me, knowing I will never forsake him, no, never].

15 He shall call upon Me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.

16 With long life will I satisfy him and show him My salvation.


WITH LONG LIFE HE WILL SATISFY ME!

The Six Thousand Dollar Pyramid


Do you remember the television game show, THE TEN THOUSAND DOLLAR PYRAMID? This is a photo of THE SIX THOUSAND DOLLAR PYRAMID. This is what six thousand dollars will buy you nowadays - six bottles of Noxafil (Posaconazole) antifungal to kill fungal infections. This is a one month supply of this drug that I am to take for six months.

Posaconazole Trivia:

1. Where is this expensive drug produced?
2. In what form is this drug?
3. What does Posaconazole taste like?

Trivia Answers:

1. Ireland
2. Liquid
3. A combination of dirty socks, spoiled milk, and rancid anything. (Granted I have not tasted any of these items, but it gives you a description of what life on Posaconazole tastes like.)

Wednesday, March 11, 2009

A Prayer for Today: March 11, 2009

Precious Father,

I will praise You with my whole heart. In the dark before dawn, I will rejoice at the mention of Your Name and I will praise You. You are a very present help in trouble.

Forgive us, O Lord, when we fail You. Know our sorrow when we fail to honor and obey You and Your Word. Purge our hearts of unrighteousness.

We lift Dr. Hamblin to You, O Lord. We are ever grateful of his guidance and the contributions he has made to find a CLL cure. He is quick to praise You and credit You for Who You are and what You do. Go to his side this week as he recovers. Remove pain from his body. Bring a God-breathed peace and rest to his body and soul. Provide exceptional medical care for him by each person who is assigned to tend to him. We ask that anything not normal, be removed from his body and allow him to be given a clean bill of health.

Psalm 60:11 tells us that the “help of man is useless”. So we come to You, laying our burdens at Your feet. Bring a speedy recovery to all who are suffering with problems in their bodies. Bring good results to all awaiting test results, such as my Dad. Continue to work in the midst of those receiving treatment such as Randy. Bring continued good reports.

The book of James instructs us, “For what is your life? It is even a vapor that appears for a little time and then vanishes away.” Prioritize our calendars and schedules, Father. Help us to live our lives as though today could be our last. Life is fleeting and we need Your guidance so that we do not waste a moment. In the midst of great need, continually remind us that we are here to glorify You and Your Name. Remind us of the lost souls who cross our paths each day. Let us have Your heart for the materially poor and those spiritually destitute. Help us not to spend our energies and resources on living the American “dream” – let us strive to use these energies and resources to reach the world for You.

I love you, Lord. In Jesus’ Mighty Name I pray. Amen.

Very Urgent Prayer Request: March 11, 2009

I am very ill and in a very serious predicament. Please forward this request to others who will pray.

I need people to intercede for me as never before. Another fungal infection has grown out on culture - this can be life-threatening to someone with little immune function, like myself. This growth has occurred in the presence of my taking a strong antifungal, Itraconazole and two antibiotics.

UPDATE:

I returned to the oncologists' infusion center today. They began yet another IV drug today (Micafungin) - I will have to go everyday, seven days a week, for a minimum of 3 weeks-- for this IV treatment.

Another very strong antifungal will be started tomorrow - it is oral but the pharmacy ran it through on the drug card and our co-pay was $5000 per month -- yes, five thousand. Fortunately, the Lord has provided and a lady at the insurance company over-rode the co-pay -it should arrive by noon tomorrow. I will have the IV in the morning and then be desensitized and begin the second antifungal (Posaconazole) tomorrow afternoon.

We need a HUGE breakthrough. I need the fungal infections to be stopped and not allowed to spread further (as well as the bacterial infection I am fighting). These drugs both impair marrow function and cause drops in platelets, red cells and neutrophils -- these are all counts I am struggling to maintain due to the high percentage of leukemia impeding marrow function. Please pray that God can preserve my marrow function and prevent transfusions, etc.

And both of the new drugs can cause kidney and liver complications, so believe and agree with me that my organs will be guarded by Him. I will be having labs every couple of days to closely monitor the counts.

I shall not die but live and proclaim the works of the Lord ......

Tuesday, March 10, 2009

Orange Beach



Another of our daughters and son-in-law are in Orange Beach this week. Here are a couple of their photos they sent to me. They went parasailing 600 feet over the ocean today, so I hope to get some of those photos to share.

Monday, March 9, 2009

Prayer Request & Update: March 9, 2009

Please continue to remember me in your prayers. I ran a temperature last night. I went to my family doctor's office this morning for labs -- they just called and I am neutropenic again. So, I am going at 4 PM for another Neupogen shot. I had a reaction to the last one, so please pray that I will tolerate this. My WBC had increased by 10,000 since last Thursday, so it is difficult to say if another infection has taken up residence (despite being on 2 antibiotics, an antifungal, and an antiviral) or if the leukemia is on a proliferation spree.

Jamaica



One of our daughters and son-in-law are vacationing in Jamaica. Here are a couple of their photographs I received last night. Wishing I was there .......

Sunday, March 8, 2009

Prayer Shawl


Power of Prayer and Perseverance

I have to share with you the events of this morning. I had been awake since 5 AM this morning. I looked back at my Blog before I typed this and I posted at 7:59 AM this prayer request: "Please pray for me to have divine revelation and great peace about the treatment I should pursue."

Growing more and more groggy, at 10:34 AM, I posted a sketch of Jesus' face with the heading "HE IS LISTENING". Then I drifted back to sleep. I awoke a few minutes ago and my husband told me of visitors we had while I slept.

If you ever doubt that God isn't at work or listening, I urge you to read this. A man and woman who live probably 45-50 miles from me, had learned of my battle against leukemia. They have never met me and I have never met them. They had felt impressed to pray for me. They had e-mailed me twice and both times the e-mail was returned to them as "undeliverable". Today, they did not allow Satan to stop them on the mission God assigned to them. They drove miles to our home to personally deliver a print-out of that e-mail (which had my e-mail address exactly correct). My husband met them while I slept. We are touched beyond words to express our gratitude to Alan and Mary.

May I share their e-mail to me (deliverable by two faithful servants, yet denied delivery by our "reliable" e-mail systems). Please read what I asked for in my early morning Blog update and prayer request and then absorb the first paragraph of their e-mail from Ephesians. This e-mail from Alan and Mary had been typed on March 3rd, I prayed for His divine revelation earlier this morning and then this hand-delivered e-mail arrived to me this afternoon:


I pray "that the God of our Lord Jesus Christ, the Father of glory, may give to you a spirit of wisdom and revelation of the knowledge of Him. I pray that the eyes of your heart may be enlightened, so that you may know what is the hope of His calling, what are the riches of the glory of His inheritance in the saints, and what is the surpassing greatness of His power toward us who believe. These are in accordance with the working of the strength of His might...." Ephesians 1:17-19

We have been keeping watch of the fiery trial that you have been fighting, and been praying for you. As Mary Ann had e-mailed to you, I felt an impression from the Lord yesterday that we should come pray for you, but for quite obvious reasons, that is not possible right now. I asked God to show me last night more clearly what we were to do. One thing that quickened my spirit was some time ago, when you shared your experience with the story of the woman who was healed from her bleeding by touching Jesus' garment.

In the Gospel of Matthew 9:20, it says she touched the fringe of His cloak. If you look up the Hebrew word for fringe, it is 'tsiytsah' and it means a 'floral or winglike projection, i.e. a fringe or tassel'. If you follow the root meaning on back it stems from a word that means to bloom, blossom, twinkle, flourish.

His garment was actually His outer cloak, which would have been his prayer shawl, There is much symbolism and rich meaning in the woman touching the tassel or fringe of the corner of Jesus' prayer shawl.

Stacie, God can use any vehicle to transport prayer. He made everything. We would like to anoint this prayer message to you via e-mail for God's awesome Grace, Mercy, and His Shalom for completeness to surround you and to bring complete healing to body, soul and spirit, We pray that you will know the 'hope' (confident expectation)of His calling, as you reach and touch the fringe of His cloak.

Grace, love and peace to you from our Lord and Savior Jesus Christ.
Alan and Mary


I am humbled and speechless. Is it not amazing that God would speak to virtual strangers about my needs? Is it not just like our Father to impress upon believers' hearts, my deep longing and faith that He will heal me as He did for that lady who suffered with the issue of blood for twelve years (despite the reports I have received)? Is it not like the Holy Spirit to speak to hearts and spirits and to arrange the details of this morning?

The prayer shawl is beautiful and holy. Its presence is anointed and richly symbolic to me. As I cry out during the night for God to touch and heal my body, I now have a tangible tassel, fringe to touch as I reach for the "hem of His garment". Many times, I tell my Father, "I am reaching, I am reaching for that hem." My spirit can picture its white and blue linen cloth, wrapped around my Savior.

In closing, my mind returned to the Scripture in Numbers 15:

Tassels on Garments

37 Again the LORD spoke to Moses, saying, 38 “Speak to the children of Israel: Tell them to make tassels on the corners of their garments throughout their generations, and to put a blue thread in the tassels of the corners. 39 And you shall have the tassel, that you may look upon it and remember all the commandments of the LORD and do them, and that you may not follow the harlotry to which your own heart and your own eyes are inclined, 40 and that you may remember and do all My commandments, and be holy for your God. 41 I am the LORD your God, who brought you out of the land of Egypt, to be your God: I am the LORD your God.”


He is my God and He will deliver me. And as the root meaning of fringe states: bloom, blossom, twinkle, flourish -- I await new life, new bone marrow, a new immune system, a new life to "bloom, blossom, twinkle and flourish".

He is Listening

The Link of Prayer

It is amazing to watch how my request for prayer traverse the globe and are forwarded on and on to other believers. A friend of mine, Mary Ann, has been faithful to forward my requests to the prayer team at her church. Weekly, this group is praying for me. (Thank you Donna and prayer warriors.)

She wrote this week, asking that my prayer warriors and I pray for a young woman named Jessica. She writes:

"Jessica is about 24 now. Nearly 2 years ago, she had a battle with Ovarian Cancer. It was pretty bad, but she made it and was Cancer Free until around Thanksgiving. She attended Nursing School throughout her illness & treatments. They have now found it in her abdomen & she has been in a terrible fight ever since. Horrible reactions to Chemos, etc, Stacie knows all about that. She is about half way through her treatments, I THINK. Her treatments are so terrible & life-threatening, that they hospitalize her for them, but she stays sick the whole time, during and between treatments. I believe there is great power in it, when we pray for someone else in a similar battle. So I asked them to pray for Stacie, and I'm asking Stacie to pray for Jessica."

So, as each of you remember me, please remember this young woman, Jessica, in your prayers. She is about the age of our three daughters, so I cannot imagine the heartache of her parents as they watch her endure this battle. Let us agree:

Father God,

We praise You that we can approach Your throne boldly on behalf of Jessica. You are her Creator. You know the inner workings of her body, far better than any physician. This day, I ask, in Your Name, that the Holy Spirit reveal the perfect treatment plan for Jessica. We ask that you perform the impossible in her body and that this disease will not be meant for death but will be turned around and used for Your glory. Bring comfort and pain relief to every cell in her body. Comfort and peace I speak to Jessica and her family. May they feel Your arms tightly wrapped around them. I speak to the mountain of cancer in her young body and ask that it be cast into the sea. Speak encouragement into this situation. I thank You and believe that we will learn of Jessica's improvement, speedily! In Jesus' Precious and Priceless Name I pray. Amen.

Later, I received this e-mail from Jessica's mother:

Please let Stacie know we will keep her in our prayers. We will pray the antibiotic washings will kill the infection once and for all. We will pray for her to be relieved of battling the constant infections as a result of the leukemia. We will pray that she will be healed completely and for her life to return to normal.. We will also pray for the Lord to bring her rest, comfort and peace while she battles this illness. We feel for her.... I can't even imagine battling the disease for as many years as she has! We also realize, as with Jessica, that the Lord is by her side...holding her hand as she continues her battle. He will give her strength and hope..
Thank you and we love you all!
Jerry & Susan, Jessica & Linley

An Update & Reflections: March 8, 2009

Not much newsworthy to report to my Blog Buddies. I continue on the medications and pray that the infections are resolving. It will probably be another two weeks or longer before we have the next fungal cultures back. On Wednesday, I will have more labs drawn and determine if I need another Neupogen injection to boost my infection fighting neutrophils or not. I am very, very weak from this last 6+ week infection battle. The weakness is not helped by medication side effects and the low hemoglobin.

Once I can emerge from these infections, I must face my most difficult treatment decision of this lengthy cancer battle. I anticipate entering into the next rounds of chemotherapy by early May. Choices are limited and dangerous. I know I cannot make this decision without clear, precise guidance from the Lord. Please pray for me to have divine revelation and great peace about the treatment I should pursue. The leukemia specialist at Ohio State told me at my last visit that it will be a "challenge" for me to survive standard chemotherapy, given the level of immune suppression I have combined with the drug reactions and amount of leukemia in my marrow (98 percent). I return to Ohio State in early April.

Nothing is impossible for God. By believing this statement, I can move forward despite the dire and dreary predictions and reports of mortal men. God has spared my life over and over and I have lived more years than any doctor ever believed possible. By God, through God, and with God, He has sustained me. I know that HE alone knows the best course of action for me. I need to have my mind and spirit free of doubt and fear so that I can hear the Holy Spirit whisper into my soul, the path I am to follow.

Thursday, March 5, 2009


Since the past six or seven weeks have been a battle against germs, I found some humor in this cartoon that I found at NursingCenter.com. It gave me a face and personality for Moldy S. Brumptii or possibly Moraxella.

Update: March 5, 2009

I finished my IVIG in a little over 8 hours today. All went well without reactions. My Neutrophils continued to hold in a less dangerous range, so I did not have the Neupogen today.

Concerning though, my platelets dropped to 89 (normal 130-400)and my hemoglobin was in the 9 range (normal 12-16) - no wonder I have been so exhausted and pale. Hoping to avoid blood transfusions. It is difficult to discern if the (1) leukemia is further impacting the marrow function; (2) the ongoing infection is suppressing marrow function; or (3) one of the drugs I am taking is causing these declines.

For now, I am free of medical procedures until next week. YIPPPPPPPPEEEEEEEEEEEEE!

(Except for the six daily large, looming syringes of Tobramycin injected up my nose. The nurse who gave me that today aptly noted that the amount of liquid that went in was not equivalent to the amount of liquid that drained back out. I told her that must mean my head is empty and it is being retained inside there somewhere. Does that make me a bubble-head?)

Thanks for praying!

“ Fear not, for I have redeemed you;
I have called you by your name;
You are Mine.
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."

The End of A Nation - Sound Familiar?

"You cannot multiply wealth by dividing it. You cannot legislate the poor into freedom by legislating the wealthy out of freedom. What one person receives without working for, another person must work for without receiving. The Government cannot give to anybody anything that the Government does not first take from somebody else. When half of the people get the idea that they do not have to work because the other half is going to take care of them, and when the other half get's the idea that it does no good to work because somebody else is going to get what they work for, that is surely the end of any nation's future."

--Abraham Lincoln

Wednesday, March 4, 2009

Enquiring Minds Want to Know



Since enquiring minds want to know ... I am posting some information on the application of Tobramycin (powerful antibiotic) that I am doing straight into the sinus cavities. The photos show the supplies needed and what one dose of the medication looks like (two large, filled syringes). I have to receive 6 of these syringe-fuls of medication put up through my nose each day. Since I try to keep my Blog one that does not have to post disclaimers, I will not post the photos of the actual procedure. :-)

My chemo nurses said they drew straws the other day to see which one had to give this to me. The short-straw nurse told me as she pushed all of this into my sinuses, with my eyes watering and trying not to choke, that she felt terrible to put me through it. When she finished, I told her, "Dana, what you did could save my life." I hope that made her feel better.

It is such with our Christian walks. Sometimes God allows us to go through very difficult situations. And He must be looking down on us, with tears in His God-eyes, wishing He didn't have to see us endure the moment. Yet, deep in His heart, He always knows the temporary pain or trial or tear will work for our greater good, if we continute to seek Him and trust Him.

A Prayer for Today: March 4, 2009

Abba Father,

I rejoice at the sunlight of this morning. I am reminded of Your might and power as the sun warms our planet. I am reminded of Your mercy as You regulate the sun’s temperature so that life survives and not perishes under its rays. I am reminded of your omnipotence as the intricacies of our universe remain consistent under the authority of Your Name.

I praise You for life. The air in my lungs and the beats of my heart are not taken for granted. I worship You, Alone, Abba Father, because apart from You, we are nothing. With Your Word and Your companionship, we will not let our hearts be troubled during difficult times. You are the Way, the Truth, and the Life and You are all that we can completely rely upon.

Today, I uplift a brother in Christ who is facing a new diagnosis and upcoming surgery next week. Reveal Yourself through Your Spirit to him, his family and his medical team. We pray for perfection through this surgery – eradicate every harmful cell and prevent all infections or complications from occurring. He has the mind of Christ, through You, and I am asking that the Lord of the Universe, encourage, comfort, strengthen and provide peace to his inner being. Let this recovery be swift and amazingly miraculous. We are trusting and believing, You, O Lord.

Only by Your stripes, are we healed and rescued from such dangerous foes as sickness and disease. Protect each of our lives from the brutality of serious infections and other complications. Restore families, lives broken by addictions, grant traveling mercies to our children this next week or two, and let each of our lives be a reflection of Your love, healing, forgiveness, and power to those who do not know You yet, Father.

My thoughts are not your thoughts.
Nor are your ways My ways, says the Lord.
For as the heavens are higher than the earth
So are My ways higher than your ways
And my thoughts than your thoughts.
So shall My Word be that goes forth from My mouth.
It shall not return to Me void.
But it shall accomplish what I please.
(Isaiah 55:8,9,11)

Thank You for hearing our prayers and petitions. We are looking to You, trusting that Your ways will always be better than our ways. And that the promises of Your Word, which we cling to, will not return void.

In My Savior’s Precious Name I pray, Amen.

Update & Prayer Request: March 4, 2009

The results ......

According to labs at the University of Texas, MD Anderson, Moraxella catarrhalis is the bacteria growing from sinus cultures - It is resistant to Cipro, so I discontinued that drug last night. It is beta lactamase positive but appears that Augmentin is one of the sensitivities (I was desensitized to Augmentin last week). This is such an unusual organism, that the lab notes that there are no guidelines regarding interpretation of susceptibilities, etc. Tobramycin is also a usual moraxella sensitivity, so I remain on that. Decisions will be made based on clinical improvement if IV or other antibiotics will be added.

The fungal sensitivites (S. brumptii) were discussed with the lab director at University of Texas. He said first of all this is a rare mold and we need to confirm its presence on a second fungal culture before making antifungal medication changes -- If thaose changes are necessary, then he would suggest posaconazole and perhaps in combination with the Cancidas. I will remain on Itraconazole to prevent a systemic fungal infection from the intensive antibiotics I am taking.

IVIG was bumped up to tomorrow with these infections present, insurance will pay for it every 3 weeks versus every 4 weeks and my ANC will be rechecked to see if I need Neupogen. So tomorrow will be a 9 or 10 hour day.

Your prayers and loving messages are precious to me. I definitely need to see a breakthrough on my behalf. I probably have 50 percent of the strength I had last week and that concerns me when I become so weak. This report is a testament to what difficulty a compromised immune system is having to fight very rare, unusual organisms. Please pray that everyone interpreting these cultures and related data will be given God-breathed understanding and wisdom.

Sunday, March 1, 2009

Real Estate Transfers: Trading Tents for Mansions

2 Corinthians 5:1-8

“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.”

When we are absent from the body (a kindly way of saying dead, kicked the bucket), the Apostle Paul tells us in this passage of Scripture that we will be present with God. What an encouraging reminder to believers! Just because the doctors pull the white sheet over our heads, there is no reason for concern – Christians will immediately take up residence in their Heavenly mansion.

The prospect of death of the earthly body (tent), that we reside in daily, has little appeal to most people. For many earth residents, the worst possible event they can imagine is the death of themselves or their loved ones. I must be a peculiar resident, as death to the physical body is not the worst possible scenario in my humble opinion. I know I am Heaven bound based upon my confession of sins and acceptance of Christ as my Redeemer, Forgiver and Savior.

Personally, the thought of one of my loved ones dying and not knowing if he or she had accepted Christ and sought forgiveness for his or her sins, is the worst possible event my mind can wrap itself around. I cannot imagine my grief to watch a loved one die and not have assurance to his or her eternal destiny.

None of us are certain of the day or hour of our last breath. That is why we must not tarry. We must be prepared. Our sins must be forgiven and we must have confessed with our mouths that Jesus is the Lord of our lives. We must believe. He knows we will not be perfect. He is well aware of how we will fail and sin, even before we commit the transgression. Yet, He still maintains a Heavenly Home for us as we struggle through life on earth.

To release myself or a loved one at the moment breath leaves our lungs into the hands of our Father is not the end, by any means. Death of the physical body is simply relocating from these temporary, flimsy, tents of bodies we are now residing in for our permanent, Heavenly homes. It is the best transfer ever to be experienced – a move up to the best neighborhood imaginable. Real estate values are not a concern in Heaven. Properties there are as priceless today as they were before the economic upheaval. We won’t have to be concerned about the neighbors – we will all be redeemed and forgiven. Our mansions will be custom built by God Himself (and I doubt the roofs will leak).

Reflect upon these Scriptures if you have any doubt that when your heart beats for the last time if you will have a Heavenly Home awaiting you.

Romans 10:13
For “whoever calls on the name of the LORD shall be saved.”

I Timothy 2: 3-4
3 For this is good and acceptable in the sight of God our Savior, 4 who desires all men to be saved and to come to the knowledge of the truth.

Ephesians 2:8-9
8 For by grace you have been saved through faith, and that not of yourselves; it is the gift of God, 9 not of works, lest anyone should boast.

Acts 16: 31
31 So they said, “Believe on the Lord Jesus Christ, and you will be saved,

John 3:15-21
15 that whoever believes in Him should not perish but[b] have eternal life. 16 For God so loved the world that He gave His only begotten Son, that whoever believes in Him should not perish but have everlasting life. 17 For God did not send His Son into the world to condemn the world, but that the world through Him might be saved.
18 “He who believes in Him is not condemned; but he who does not believe is condemned already, because he has not believed in the name of the only begotten Son of God. 19 And this is the condemnation, that the light has come into the world, and men loved darkness rather than light, because their deeds were evil. 20 For everyone practicing evil hates the light and does not come to the light, lest his deeds should be exposed. 21 But he who does the truth comes to the light, that his deeds may be clearly seen, that they have been done in God.”

Update & Prayer Request: March 1, 2009

James 1:4
But let patience have its perfect work, that you may be perfect and complete, lacking nothing.

STILL waiting on lab reports. So, all we can do is believe this wait is instilling patience in us that will work to our best interests.

My husband and I were up most of the night, watching for drug reactions. I am taking medications almost every hour around the clock right now. We are so exhausted. I need to sleep but the steroids are preventing sleep.

Unless we have "breaking news" the plan is for me to go to the oncologists' office tomorrow to check the peak and trough levels of the Tobra (levels must be carefully monitored since Tobra can cause deafness and kidney failure). So I will have blood drawn for the trough (lowest level) then they will administer the Tobra treatment and them draw a peak level (highest level).

I will also have my IgG (immunoglobulin) level checked to see if are moving up my all-day IVIG treatment from next week to this week. And we will have a stat CBC so that we will know if I need Neupogen treatment tomorrow to increase the neutrophils.

We are doing everything in our power to give my body assistance in fighting these serious infections and to keep me out of the hospital with so much flu in our community, but I am just about too sick to be doing all of this outpatient. I need to see a breakthrough quickly or they will admit me to the "slammer" (my "affectionate" name for the hospital).