Tuesday, September 30, 2008

September Draws to a Close


Philip

Today we celebrate the first anniversary of our son-in-law, Philip's, kidney transplant.

Philip, we rejoice with you over the new life that you have been given. You endured the years in kidney failure and on dialysis without complaint. You continued to strive forward and work upward of 60 hours per week, even while on dialysis to support your family. Not many people could have achieved that.

Your bravery and courage as you faced the transplant were inspiring. Although our hearts ache today for Amber's family (your donor), we rejoice with you over reaching this one year milestone in such awesome health.

I praise God and thank Him for keeping you in His care. May you be blessed with a long, healthy, happy life. Celebrate life!

A Thank You To Family of Kidney Donor

A year ago yesterday, a family lost their 17 year old daughter in an automobile accident. Her grieving family made the decision to donate her organs. Fortunately, for our family, our 28 year old son-in-law (who was in kidney failure and on dialysis) was the recipient of one of her kidneys. I wrote this letter to her family.

To the mother/sisters who selflessly donated their daughter’s/sister’s kidney to our son-in-law:

Nearly a year ago, on September 29, our family received the long anticipated call from the IU transplant coordinator that a kidney had been obtained for our son-in-law. He was 28 years old and had been on dialysis for several years due to a genetic kidney disease called Alport’s Syndrome.(His brother also has this disease.) We made a hurried trip to IU Medical Center for the transplant performed on September 30, 2007. All the while, we knew that another family had suffered a lost of a loved one in order to give our son-in-law a new life.

He had managed to continue working full-time while on dialysis. His wife (our daughter) is a Type I (insulin-dependent diabetic), so their lives were consumed with medical concerns. Our son-in-law did well on dialysis while our family prayed for a long time for a new kidney that would be a perfect match for him. He had received one previous call from my transplant coordinator that a potential kidney had been found and after going through the excitement of that call, he was told it was determined that the doctors were not confident transplanting that kidney since he was such a young person. That was very disappointing. And while we prayed for a healthy kidney, in our hearts, we knew that someone would have to lose their life in order to give him a new life.

Our son-in-law recently received your letter (from donor's family). It was very touching and humbling. We hadn’t anticipated our response to hearing from the donor’s family, but it touched us deeply. Suddenly, we had a name and a life story to attach to the new kidney. I am so sorry for the loss your family had to experience to give life to our family. Your gift is a gift that we consider absolutely priceless and selfless. To tell you, “thank you” is so inadequate.

I pray that God has given you peace and comfort and strength to continue on without your precious daughter and sister. We can only imagine your grief and the empty hole that has been left in your family. It was encouraging to hear Amber was a Christian as our families are Christians as well. Our son-in-law has not have one complication during the transplant or recovery and he has never had one sign of rejection. Amber and Philip were a perfect match!


With gratitude beyond mere words,
Philip's mother-in-law

Monday, September 29, 2008

Happy 50th Birthday to My Friend Terri

Unfortunately, my OSU trip was today, the 50th birthday of one of my dearest friends, Terri. So, I am missing her party this evening as I recuperate from our long journey. I have known Terri for over a dozen years. We raised our daughters together and have many wonderful memories stored in our hearts. We crafted and baked ourselves crazy each Christmas. Terri is a wonderful, Christian wife and mother. She is inventive, creative, resourceful, faithful, joyful, peaceful, funny, hard working, and a faithful friend and prayer partner to me. I pray God will bless her and all areas of her life as she celebrates today and for many years to come. HAPPY BIRTHDAY TERRI!

Some Photos from OSU Trip



These are photos of the Ohio State University Medical Center where I see Dr. Byrd and a photo of the lobby of our hotel where we stay on these trips.




We've Returned from Ohio State

We have returned from our visit with Dr. Byrd. Dr. Byrd and his staff are very kind, professional people. I only wish the drive was shorter to consult with them. I met one of my CLL online buddies from Florida at OSU, so that was a neat bonus.

The skin lesion on my leg, (that has been biopsied twice) was determined by the OSU team to be a leukemic infiltrate. This means that the leukemia cells are now emerging through my skin. They took one look at the biopsy report and the lesion and didn't bat an eye that it was an infiltration. They said we could expect more, but to remain vigilant with any and all lesions (biopsy, etc.) due to my increased risk of skin cancer.

My hemoglobin had improved from 7 when I was last hospitalized in August to 9.8 today. I have made it during daytime hours without oxygen for the past few days. So that is a praise! The hemoglobin should be 12-14, so I still have a way to go for it to be in normal ranges, but it is nice to just be able to breathe comfortably on my own without oxygen.

Dr. Byrd and I have agreed upon a tentative plan (and I state "tentative" as we all know how quickly the best leukemia plans can change directions) to try to get me through the winter (flu season and increased risks for infection) without any heavy chemotherapy or other treatments. I will see Dr. Byrd again in December. His fellow said that "band aid" type treatments of things like high dose steroids could be used if my very enlarged spleen continues to increase and needs reduction. (Spleen is 10 cm below the left costal margin -- no wonder it feels as though I tote around a full term baby all the time).

Then the plan is to return in March to OSU (post-flu season) to readdress the topic of treatment with Revlimid (the treatment I declined in July because I was not comfortable being in an early phase of a clinical trial. More data will be available for consideration in March). There will also be a couple of other clinical trials opening in March, Dr. Byrd told me, as well as FDA approval of the drug Flavopiridol is expected.

Dr. Byrd and the fellow also talked to me about transplant -- they said we have to make all decisions in the context that I will be headed to transplant one day -- they said that every year advancements are made and survival rates improve. So each year that I can survive, is a year closer to a better chance to survive a transplant. I do not have a sibling match for a transplant, so we will have to turn to the National Donor Marrow Registry to find a matched unrelated donor for me. When that time comes, we may need to call on friends and family to be tested to see if anyone is an unidentified, secret "twin" to me! Wouldn't that be scary to learn that you are my genetic twin? YIKES!

Severe right hip and back pain flared up on Saturday, so the trip and walking were difficult. I look forward to physical therapy tomorrow to try to work out that pain. We appreciate your prayers.

This is a photograph of the front the Ohio State University Medical Center where I see Dr. Byrd and team:

Sunday, September 28, 2008

Ohio State Visit

We arrived in Columbus, Ohio, earlier this afternoon. I'm spending the evening researching some various treatment options, so that I will be well informed for my consultation tomorrow at Ohio State. The accommodations are very nice at the Hilton-Easton (a suburb of Columbus). The trip takes just under five hours to drive.

We had a pleasant drive over, beginning with an initial stop to visit Little Man. He was glad (as always) to see his Grampy and Grammy. He welcomed Grampy with yet another dirty diaper. (After our having three children in diapers at the same time, Grampy is quite skilled at diaper changing.) Little Man has "matured" into a Big Man today -- he lost what remained of his umbilical cord. I told him he is a "Big Man" now!

The trip passed quickly as I worked on writing a grant in the car. My husband didn't think I would be able to work on my laptop AND help him drive (I'm not certain what he was insinuating with that comment)!

Three other leukemia patients with whom I have contact via online support groups all have their appointments with Dr. Byrd tomorrow at OSU. It is possible we might have a leukemia reunion of sorts in the waiting room. It will be nice to have faces to put with e-mails. One patient is from Ohio, one from Florida, and one lives only about an hour away from us.

We ask for and appreciate your continued prayers for wisdom and discernment for me as I face and make difficult treatment and medical decisions.

Saturday, September 27, 2008

A Bridge Through Time


Photograph copyright Stacie








Thursday, September 25, 2008

A Prayer for Today: September 25, 2008

Jesus,

Today we praise You, Lord, for knowing us so intimately. We are ever-grateful that You alone know us, because You have searched us. It comforts us and we praise You for knowing “…when we sit and when we rise…..you discern our going out and our lying down; You are familiar with all our ways.” (Psalm 139) Our world is facing challenges and dangers everyday, but Your protection and peace comfort us.

We repent of our shortcomings, Father. In our humanness, we fail You and our fellow man. Forgive us, we ask. “Search me, O God, and know my heart; test me and know my anxious thoughts.” (Psalm 139) When the searchlight of Your Spirit shines brightly on our lives and hearts, we become acutely aware of those areas in which we are failing You. Prompt us to repentance and to strive toward living our lives that are pleasing to You. Whether it is unforgiveness, strife, doubt, fear, or pure unbelief, purge our lives of those traits that are displeasing to You.

We rejoice, Lord, that even though many of our bodies appear broken and beaten up right now, that we can be comforted to know that Your hands created these temples we reside in each day.

“For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body.”(Psalm 139)

Thank You, Jesus, for Your ever-listening ear. We are most grateful that You are near to us, Lord.

In Your Name we pray, Amen.

Wednesday, September 24, 2008

Request for Prayer: September 24, 2008

I have started the first component of the alternative treatment without complications. Please continue to pray for God to use this therapy in an amazingly, healing fashion. Also, we will be returning to Ohio State University's Arthur James Cancer Hospital this weekend. Please pray for Dr. Byrd to have wisdom and understanding for all of his recommendations for me. In addition, please pray for traveling protection for us.

Many of you will receive prayer e-mails from my dear friend, Tina. She has been such a faithful friend and recruiter of prayers for me for over 12 years. Usually, if Tina e-mails you, a new request for prayer has been posted on this Blog or I am hospitalized and in need of urgent prayer.

Colossians 1:9-12

"For this reason we also, since the day we heard it, do not cease to pray for you, and to ask that you may be filled with the knowledge of His will in all wisdom and spiritual understanding; that you may walk worthy of the Lord, fully pleasing Him, being fruitful in every good work and increasing in the knowledge of God; strengthened with all might, according to His glorious power, for all patience and long suffering with joy; giving thanks to the Father who has qualified us to be partakers of the inheritance of the saints in the light."

Tuesday, September 23, 2008

I Believe in Angels!

Hebrews 1:14:
"Are they (angels) not all ministering spirits, sent out to render service for the sake of those who will inherit salvation?"

Some background information for my readers to consider before reading about my experience today: Many of my readers know that today I have been planning to begin the new alternative treatments that I have been discussing with the University of Washington researcher. In addition to the two treatments that I am beginning this week, the researcher also stated that I could take Pawpaw http://en.wikipedia.org/wiki/Pawpaw .

As with past treatments, I always pray and ask the Lord to give me a sign that I am to proceed with my intended plans. I trust His ways far more than my ways, therefore, I always ask for God's help and guidance. Thus, I have been intently praying the last few days for God to give me that sign that I was to proceed with today's plans to initiate treatment with these two new products.

Fast forward to around noon today: I needed to take Vitamins C and E along with a spoon of a dairy product such as a natural ice cream or yogurt to aid with the digestion of the new treatments. I went to our local pharmacy and purchased those three items. I returned to my car and was leaning over the console, attempting to put my ice cream in a cooler so that it would not melt on the drive to my doctor's office (where I was scheduled to take the first treatment).

Suddenly, I sensed that someone was watching me. I sat up and there was an elderly woman with snow-white hair peeking in my driver's side window. Although startled, I smiled and asked her, "May I help you?"

And she replied, "Would you like to buy a bag of Pawpaws?"

At that very moment, the connection had not been rendered between my heart and mind and I told her I didn't think so. She walked around the side of the building and I had my "ah ha" moment. I had been praying for a sign from my Heavenly Father and I believe with all my heart this was an angel He sent to ask me if I needed a bag of Pawpaws (the third element of this treatment protocol)!

I put my car into gear, knowing that I wanted to find my "Pawpaw Angel" and purchase that bag of Pawpaws she had offered to me. And she was nowhere in sight. I circled the building and there was no elderly woman, no car or truck selling Pawpaws from the tailgate or trunk, no one.

I immediately called my husband, Mom, daughters, and best friend and told them about my encounter. We were all reassured that an angel had truly been in my midst, sent to comfort, reassure me, and to provide that "sign" that I had been praying for all week. After all, how many times have you gotten into your car at CVS to have an elderly woman ask you if you'd like to buy a bag of Pawpaws?

And as my best friend and I reflected on the phone and realized how foolish it all sounds to be battling cancer and have a combination of a plant from China, a fatty acid, and a Pawpaw plant taken with a spoonful of Haagen-Dazs natural vanilla ice cream to battle leukemia. We were both reminded that Jesus moistened some mud with his saliva and patted it on a pair of blinded eyes and they opened and were able to see again.

Isaiah 55:8 “ 'For My thoughts are not your thoughts,
nor are your ways My ways,' says the LORD."

I confidently proceeded to the doctor's office and took the first product of the protocol, knowing that it would not harm me.

Monday, September 22, 2008

Family Heritage III

This photograph is of my husband's great-grandparents (maternal).

Family Heritage II

This photograph is of some of my maternal grandmother's family members.

Family Heritage


I believe this photo would have been taken in the late 1930's of my mother-in-law, her parents, and siblings.

Drumroll Please......

Can you hear the roll of the percussionists as I make this announcement?

I completed the IVIG without complications today. I am feeling poorly tonight with nausea, headache, and light sensitivity. These are not unusual side effects from infusing thousands of people's immunoglobulins into my veins. It appears that some of the new "visitors" must not be welcome in my system.

And now the announcement requiring the drum roll .....

Tomorrow, I will begin the alternative treatment that I have been discussing with researchers at the U of Washington. Another alternative treatment will be introduced on Thursday. The product being introduced tomorrow is an ancient herb used in China to treat malaria. Traditional medicine is running out of options for me. Given that there is no clear cut path for me to follow into conventional therapies, I have elected to pursue this treatment path. I have been in contact with other leukemia patients who are using these products with success (one has seen substantial shrinkage with his spleen and my monstrous spleen would welcome some shrinkage)!

Please agree in prayer with me that I will not have serious reactions to these products and that All Mighty God will touch and work through these products to induce relief and healing for me. Also, please agree for God to continue to provide the resources to purchase so many products that our insurance is not covering for me.

I Will Trust

Another prayer partner of mine, Lynda, from our CLL online group, posted this photograph on our site. It was taken at the Canaan in the Prayer Garden in Phoenix, Arizona. Right now, I do not understand why my body is rebelling and suffering as it currently is and how it has for the past 12 years. Yet, I know and I trust that He alone understands and therefore, I WILL TRUST HIM.

I hope Lynda won't mind my posting on my Blog this poignant photograph that she shared. It is a powerful reminder to each of us.

Treatment Day

Do you ever notice how time will pass quickly when you are not looking forward to an event (treatment day at the oncologists' infusion center)? And, conversely, time drags by ever-so-slowly while waiting for an anticipated event (Lil Man's arrival).

Well, 28 days have flown by quickly and today, I find myself receiving my treatment that is supposed to enhance my immune system. This IVIG treatment costs over $8000 every month. If my insurance carrier would only give me that $8000 per month for world travel versus IVIG, it would be a much more pleasurable use of funds.

When I consider that one immunoglobulin IV requires literally thousands of blood donors to produce it, I have mixed emotions. This one immunoglobulin treatment requires thousands of blood donors to produce it for me. So I am filled with gratitude and and gratefulness for the people who donate life blood for patients like me. Yet, it is a bit disturbing to reflect on that many different people's blood flowing through my veins.

As a side note, we dined at a Chili's Restaurant in Indianapolis last night. We noticed that Chili's is a great supporter of St. Jude Children's Research Hospital (Memphis, TN) where children with leukemia and other cancers are treated. We once lived in a Memphis suburb and watched first-hand the wonderful work that was performed at St. Jude's. On September 29th, if anyone dines at a Chili's Restaurant, they will donate 100% of all profits that day to St. Jude's. Dine out and help a child with cancer. (Online donations also accepted on their website for this vital cause!)

For more information on Chili's : http://www.chilis.com/ourcommitment/default.asp

For more information on St. Jude: http://www.stjude.org/stjude/v/index.jsp?vgnextoid=f2bfab46cb118010VgnVCM1000000e2015acRCRD

Sunday, September 21, 2008

Request for Prayer: September 21, 2008

Please uplift me in prayer tomorrow as I will return for my 8-hour treatment (IV immunoglobulins). Pray against any serious reactions and that the blood product will be pure and free from any infections, etc.

Also, we have friends who are leaving on sabbatical to China. Please pray for them and their family as they embark on this new adventure. I believe they are leaving tomorrow, so I know that they will be on my heart as I receive this treatment.

Thank you to all of my prayer warriors -- you are great and I love all of you!

Saturday, September 20, 2008

Early Morning Visitors

Ouch, my late night of not feeling well and blogging was not a good idea. Early this morning, two of our favorite visitors arrived at our home. Lil Man brought his Mom to visit his Grampy and Grammy. We have all voted and it's unanimous: Grampy is the baby "hog"...... when he's around, it is a battle to get one's time with Lil Man.

Naturally, Grampy went for Lil Man and was proudly toting him around the house, trying to teach him his telephone number (we are a family of over-achievers) and then the noise! Fear struck in Grampy's eyes and heart. He knew that sound and rumbling from his past parenting experiences. It was dirty diaper time. Our daughter and I told him that it was his project from there on. He insisted Lil Man was too tiny for Grampy to change, but we didn't waiver. And off they went to the nursery. He hadn't lost his touch and in no time at all, Lil Man was clean and happy (but still didn't quite have his telephone number memorized)!

Living Through Others' Journeys

If my health permitted, I would travel all of the time. There are so many places I want to visit and experience. As a youngster, my parents jokingly referred to me as, "Let's Go" because I always wanted to be on the go. I have slowed to a creeping, crawling pace for the time being. Thus, for now, I enjoy hearing and seeing photos of others' travels.

One of our daughters and son-in-law have been in Nevada. They have experienced the Grand Canyon and Las Vegas. Our daughter went alone on the daring rides atop the Stratosphere. Below I have pasted from their website, descriptions of some of these rides this daring daughter rode over 1000 feet in the air. (She did not inheirit this daring spirit from her Mom.)
Read these descriptions of what our daughter subjected herself to:

Big Shot - Shoots passengers straight up 160 feet at 45 mph (over 4 Gs) until they are 1,081 feet above the Strip.
X-Scream - A giant teeter-totter that propels you 27 feet over the edge of the Tower, 866 feet above the ground.
Insanity, the Ride - A massive mechanical arm extends 64 feet over the edge of the Tower and spins you at a force of 3 Gs for a truly mind-bending experience.

Our son-in-law, the baseball guru and ultimate St. Louis Cardinal fan, was delighted to meet in person former Cincinnati Reds' players Johnny Bench and Pete Rose. He is returning home with an autographed baseball.


This photograph was taken from an airplane window of the Grand Canyon.



They stayed at Planet Hollywood. This is a photograph of their hotel.

Such is the life of the travel reporter, who from the comfort of home, through her Blog, she reports on the travels of others. Perhaps, one day, I will be on the road again.