Tuesday, April 28, 2009

Going to the Chapel

This past Saturday, our family shared in the wedding of our daughter. This was the last of three daughters' weddings. Many years ago, when I was diagnosed with leukemia and looked at three young girls, I doubted that I would ever live to see them be escorted down the aisle by their Daddy. Their weddings seemed so far away and unattainable. The impossibilities of life become possible only through Christ.

Nevertheless, God had far different plans and He strengthened my faith and helped me to believe (and not doubt) that I would live to see my three beautiful daughter brides. He carried me through numerous, life-threatening scenarios and restored health to my body. He encouraged my spirit to never, ever give up, despite negative reports and a failing body. He never left my side, but escorted me through each day's challenges and victories.

As our beautiful bride walked down the aisle on Saturday, I wept. I wept because I knew that all of our daughters were raised and on their ways to lives of their own. I wept because of the awesomeness of my Heavenly Father and how He alone enabled me to live for these special days. Praises be to Him .....

Update: April 28, 2009

It has been sometime since I have updated the Blog. Our family has been in the midst of preparations for our daughter's wedding, so blogging has been tabled for awhile.

I continue to take the antifungal for the fungal infections I have been battling. My hemoglobin refuses to improve, so the fatigue, shortness of breath, and lack of stamina continue. Yet, I rejoice that I lived to attend all three of our daughters' weddings. God is good.

This Thursday, I will have my all day IVIG treatment at the oncologists' infusion center. Please pray that this goes well without complications or reactions.

We will leave the week after Mother's Day to travel to the National Cancer Institute in Bethesda, Maryland (outside of Washington, DC). Please begin praying for safe travel for us as well as clarity with regard to selecting the next treatment protocol for the leukemia.

Thursday, April 16, 2009


In this era of instant messaging and text messaging, most of you know what "BFF" represents. Best Friends Forever. I have been blessed with many best friends in my life - and all of you know who you are and what your friendships mean to me.

Today is the 45th Birthday (best friends can reveal such information about each other) of my BFF Dawn. The beautiful part of our friendship is that we have been friends since we were infants. I was born 5 months before Dawn. Our parents were best friends and we began playing together and chumming around as tiny babies. Few people can admit having a BFF for a lifetime. We are blessed to share such a story.

We have been through the high points of life and the very deepest, darkest moments of our lives. We have cheered for each other, prayer for each other, and cried with each other. We encourage each other and have noticed that when one of us is at our lowest point, the other is usually at her highest point. Isn't that just how God works in our lives?

So today, I wish a very HAPPY BIRTHDAY to my BFF Dawn! May God bless you and keep you for many, many more years.

A Prayer for Today: April 16, 2009

Almighty Father,

We come before You with grateful hearts. In the midst of difficulties all about us, we will praise You continually and with our whole hearts. May the songs of our hearts be pleasing to You, O Lord. May our mouths and our lives continually praise. “Let everything that has breath praise the Lord. Praise the Lord!” (Psalm 150:6).

“Oh, worship the LORD in the beauty of holiness! Tremble before Him, all the earth” (Psalm 96:9). May we worship You in spirit and truth (John 4:24), Father. You created each of us to praise and worship You. Remind us daily of how important it is for us to lift our voices in praise to you.

Our needs are many. However, today, we will focus on You as our Creator, our Savior, our Healer, our Protector, our Deliverer, and our Everything. We are confident that You alone know each and every need that each of your children has today. You are orchestrating the perfect plan and path for each one of us. We will trust in You.

Our souls rejoice at the mention of Your Name, O God.

In Jesus’ Name I pray. Amen.

Tuesday, April 14, 2009

An Update for Today: April 14, 2009

To update ...

I became neutropenic again, so I had another Neupogen injection on Saturday.

A plan is evolving at the NIH (National Institutes of Health - outside of Washington, DC) for me. Dr. W. at the NIH is a wonderful doctor whom I met during my NIH trial participation 1999-2003. He is the doctor that my OSU doctor contacted at the NIH to discuss my possible participation in their Revlimid trial.

Thankfully, it appears that Dr. W. is looking for THE best treatment plan for me and he is not solely looking to place me in his Revlimid trial. I value him being so open-minded and forward thinking.

He wrote over the weekend and as soon as my husband and I read his e-mail, we both commented how well thought out it was and how it appeared Dr. W. is truly looking out for my best interests.

He suggested:

-I come to the NIH and participate in all of the screening for the Revlimid trial (lab work, CT Scan, Bone Marrow Biopsy, PET Scan, Lymph Node Biopsy, Ultrasounds).
-I meet with the Revlimid trial investigators.
-I meet with Dr. M. (my beloved NIH doctor for many years) in the CLL Clinic at the NIH to discuss other CLL trials.
-I meet with a surgical team to discuss the pros and cons of surgically removing my spleen (Splenectomy).
-I meet with the transplant team to discuss transplant options.

It will be a challenging trip, especially given the loss of strength and stamina that I have had from battling these fungal and bacterial infections since January. The research nurse just contacted me and I may be traveling to the NIH in mid-May. I will keep you posted on trip details as they become available.

If you know me well, you know how much I detest flying. I do it, but I do not like it. So I need to be able to embrace flying (if God had meant for me to fly, He would have given me wings)!

I value your continued prayers as I seek God's perfect plan for me. If His plan is for me to do no further treatment, I want His strength and courage so that I will be able to embrace that option, knowing He has had the number of days ordained for me, since before I was born.

Friday, April 10, 2009

The Easter Story

From the garden of Gethsemane

Where Jesus knelt to pray

To the betrayal done by Judas

On that grim and fatal day.

From the mighty hands of Pilate

Who wished to let Him be

To the noble priests and leaders

Who refused to set Him free.

From the crown of thorns upon His head

And lash marks from a strap

To the weight of such a heavy cross

Placed there upon His back.

From the thief who hung beside Him

Crying, “Lord, remember me”

To the gentle words of Jesus

“Today, you’ll be with me.”

From the darkness of the noon time

As He died upon the cross

To the earth that shook and trembled

In response to such a loss.

From the cheering cries of soldiers

As they took His body down

To the caring hands of Joseph

A follower new in town.

From the tomb where He was laid to rest

In linen cloth of white

To the guards who had to stand close by

Throughout both day and night.

From the stone that blocked the entrance

As it gently rolled away

To the miracle that happened

On that third and final day.

From the baffled look of soldiers

As they peered into the room

To the startled face of Mary

When she found an empty tomb.

From the strange events that happened

As the guards all turned and fled

To the words that came from angels

“He has risen from the dead.”

From the frightened eyes of Mary

As she swiftly left that place

To the light that flowed from Jesus

When she saw Him face to face.

From the doubt of His disciples

When she spoke of resurrection

To the fear upon their faces

As He walked in their direction.

From the written word of scripture

He fulfilled in prophecy

To the eleven who had gathered

On a hill in Galilee.

From the words that had been spoken

Before He went away

To His ascension into heaven

Where He lives this very day.

From the Bible on the mantle

Tis the words you need to heed

To find wisdom in its pages

And a light to sow a seed.

From the death and resurrection

Of the one we hold so dear

To the coming of His spirit

Now that Easter time is here.

From the colored eggs and candy

And an orchid trimmed in blue

To the truth found there in Scripture

Christ Jesus died for you.

~ © Marilyn Ferguson ~

Thursday, April 9, 2009

Urban Dweller

Infectious Disease Appointment

Thank you for all of your prayers, words of wisdom, and suggestions.

I went back to Indianapolis today to the infectious disease doctor (ID). I will double the Acyclovir dose(antiviral). I am definitely going to be on the expensive antifungal Posaconazole for life. The ID doctor said that Penicillium, one of the fungal infections I have, can become invasive. He is concerned about that fungal infection being left without daily medication.

He and my trusted family doctor agreed for me to hold on adding Bactrim to prevent Pneumocystic Pneumonia. My CD4 T-Cells are slightly above 200 and he said that once mine dip below 200, we will have no choice but to add the Bactrim.

I am able to discontinue the Augmentin and Tobramycin (inserted into sinus cavities)today! Woooohoooooo. It has been six weeks and the ID doctor thought that was adequate.

I have moved no further on making my treatment decision. I have received all of the clinical trial information from the NIH in Bethesda, Maryland (Washington, DC suburb) and hope to make a decision in the next two weeks. Please pray for God's guidance to intervene and walk me directly to the best treatment plan.

Wednesday, April 8, 2009

Ohio State Update

I have been too exhausted and confused to post to my Blog. The travel was harder on me than we anticipated -- yet another indication of how the leukemia is marching forward. We were blessed to share the days with our middle daughter who traveled with us.

The OSU team felt that, indeed, the CLL had progressed since my fall visit. My spleen is full of disease and extremely large and painful. I am battling neutropenia and platelets and hemoglobin are declining. Fatigue has worsened as have the infection numbers and severity.

Last fall the OSU doctor had recommended my doing the Revlimid (experimental, not FDA approved treatment) trial at OSU - and I made this trip thinking that I would leave OSU, most likely enrolled in this trial, if he had not changed his mind.

I first met with one doctor, he spent over an hour with me and answered all my questions. He told me I was going to have to increase all prophylactic attempts to avoid infection - -including NEVER being able to discontinue the Posaconazole ($6000 per month antifungal I am now taking). He also recommended that I double the Acyclovir I am taking to prevent shingles and add Bactrim (which I will discuss tomorrow when I travel to Indianapolis to consult with my infectious disease doctor). To begin Bactrim, I will have to first be desensitized.

I looked the first doctor straight in the eye and asked him if I was his Mother, what he would tell me to do and without blinking an eye, he said high dose Rituxan. He even went as far as to discussing with me how they would hospitalize me for the first week at OSU, etc. I totally (wrongly) assumed that he and my primary OSU oncologist had a new plan for me. He left the room and I was sitting there, pretty confident I knew what the treatment plan was going to be (so confident that I even had my date book out, making plans).

The primary oncologist came in and he (like his assistant) said my disease had really progressed and we needed to move forward with treatment. He then dropped the bomb - said he had been on the phone with the NIH and he would like me to consider going to the NIH in a Washington, DC suburb for their Revlimid trial. Not only was I shocked that it was not going to be high dose Rituxan, but also very confused and upset to consider all of the travel involved with NIH trial participation (I traveled in the past for several years to the NIH).

I asked about the chemotherapy Treanda and they told me absolutely NOT. The chemotherapy Fludarabine is ruled out. Campath is not an option.

I personally know the investigator of the NIH Revlimid trial from my travels there in the past. He is a wonderful physician and his research nurse has already e-mailed me the information on the trial. Unless something drastically changes, I feel no peace about this plan and I will never follow a plan without God's peace ruling.

I am so confused, upset, exhausted and perplexed, I can barely think straight. As a patient, to not have any of your consulting physicians be able to agree upon a treatment plan is absolutely maddening.

I appreciate your e-mails and prayers. Keep looking UP!

Saturday, April 4, 2009

Request for Prayer: April 4, 2009

Please keep us in your prayers. We will be leaving tomorrow to travel to Ohio State to see my leukemia specialist there. I am praying that he will offer helpful guidance to make this next treatment decision. I anticipate starting chemotherapy by the first of May.

We ask for prayers for safe travel; protection and care over our family we leave behind; wisdom and revelation for the doctor; and for God's presence to be nearby us throughout the next couple of days.

Please also pray for our little friend Hope (we call her Hopie) as she is having her tonsils removed on Monday while we are gone. If you would like to send her a message, feel free to post it on my COMMENTS link on the Blog and I will forward them to her!

I will update as I have time. Thank you!

Friday, April 3, 2009

Spring Serendipity

Photograph copyright Stacie

Wednesday, April 1, 2009

A New Season

I was not always a spring enthusiast. I awaited the snows of winter. I embraced the crisp autumn air and the rustling of fallen leaves. However, after years of being ill, I suddenly began eagerly awaiting spring’s arrival.

The grey death of winter suddenly erased clean by the emergence of spring color invigorates me. Barren brown trees, stripped of color, erupt with white blossoms and green buds. Skies, void of azure blue and fluffy white clouds, become bright and sun-filled. And yards, brown and dull without green blades of grass, become an emerald sea of new growth.

My daffodils trumpet the arrival of spring. Early, in their emergence from the still chilly soil, the yellow and white petals signal that better days lie ahead. Tiny, yellow forsythia buds promise to clothe the bleak branches of the forsythia bushes. And the shrill whistles of the blue jay and the robin awoke me last week.

With the exception of going to doctors’ appointments or treatments, I have not left our home since a few days after Christmas. Each year, flu season forces this quarantine. I long for a trip to the grocery store or to sit down for dinner in a restaurant, after over three months of doing none of these normal, life events.

I cannot tell you the depth of what the blossoming daffodil means to me this year. It signals new life – a new life that I seek for my broken body. Resurrected from the death of winter’s soil, the daffodil is fresh, vibrant, and full of life. I seek that same resurrection of my fleshly body and a new life season of health and vitality.

God's Still Small Voice

I am not a materialistic person. If a tornado raged through our neighborhood, the only material possessions I would truly miss are my photographs and keepsakes from our daughters. Furniture and wardrobes can be replaced. However, the photographic memories stored in my photo boxes, frames, and memory cards are irreplaceable. They allow me to return to years and events gone by and relive precious events and occasions.

If you know me at all, you know that I do have a current obsession – I have taken nearly 2000 photographs of our grandson in six and a half months! We have photos for every holiday, no matter how insignificant. I have taken photos for events that are not considered holidays, but are events any Grammy would think are worth remembering. For example, first spoonful of cereal, first time sitting up,and his first ride in the stroller, just to name a few.

One night a couple of weeks ago when I was very sick, I looked in my handbag for my camera. (I carry it with me so that I never miss a photo opportunity with our grandson!) And to my dismay, my camera was not there. Flashbacks to the too-many-to-count photo shoots of Lil Man raced through my mind. Hardly any material loss would have been more devastating than that of my camera with all of my Lil Man photos from birth.

The search began. My husband searched through our vehicles, thinking the camera had slid out of my purse. My mind rewound through the past days’ activities – I had been at the hospital everyday, so the possibility existed that it had exited my purse there. We searched through my tote bags, drawers, cabinets, under the couch cushions, and about anywhere that you might suggest. Nothing. The camera and memory card were gone. I was devastated.

I crawled into bed with a heavy heart. I was exhausted as it was well after midnight. I prayed. I told the Lord how much those pictures meant to me and how they could never be replaced. I asked Him to help me find my camera. Almost instantly, I knew the Holy Spirit had spoken to my spirit these words, “Look under the bed.” My body rebelled and wanted to stay in bed. I was sick and tired and disobedient. I remained in bed and again, “Look under the bed” radiated through my spirit. I reasoned. I hesitated. I thought to myself, “Why in the world would my camera be under the bed?”

Then I realized that the Lord was answering my prayer. I jumped out of the bed and knelt beside it. Lifting up the bed skirt, I poked my head under the bed. Lo and behold, there was camera planted far under the bed. Never would we have found that camera.

The lost camera object lesson taught me several valuable lessons:

1. God is interested in the smallest details of our lives.
2. God hears and answers prayers. He wants us to ask.
3. When we are still and free from distractions, we can best hear the still, small voice of the Holy Spirit speaking to our spirits.
4. Sometimes when we least feel like obeying that still, small voice of God, the rewards are the greatest when we go ahead and act in obedience.
5. God sometimes uses the answers to very small prayer requests (a lost camera) to remind us that He is equally willing and able to hear and answer the larger prayer requests (salvation of loved ones, healing of broken bodies).

Missionary Prayer Requests

Please find time in your day to pray for Jessie, my friend who is a missionary in Costa Rica. Last night she sent this letter and prayer requests:

Friends and Family,

This Saturday, 20 high school students and 8 leaders will be taking off for El Salvador for our Service Project. Kids will be making a difference in the lives of El Salvadorian families as they build houses for deserving families. Leaders will be making a difference as they invest in kids' lives all week. We will share the gospel with them each night at Young Life club, and talk through doubts and questions in small groups. We are prepared for God to be making the incredible difference in kids' and leaders' lives as we experience Him through serving and living in community. Please join us in praying for kids to connect with God and His unconditional, total love for them - making the eternal difference.


Prayer focus for April 4-11th Service Project:
- God's love to be undeniable in kids' lives
- Safety and Health