AG-221 Medication Monthly Update

Yesterday I had my 28 day (every 4 week) evaluation and testing at MD Anderson. This one involved my blood tests early that morning, a bone marrow aspiration procedure, an echocardiogram with my doctor (medical team) visits.  For the most part it was a smooth morning with only about an overall one hour delay.  By 1:00pm we had checked out of the Rotary House hotel and traveled north to spend a long weekend with the Paul's.

While we do not have the results yet of all the above test, my blood counts continue to be good. Meeting with the medical team was most encouraging as they all continue to give us positive affirmations regarding how well I am doing. As for me, I continue to get stronger and feel better than I have in over a year.  I was approved to continue with the current course of medication using the experimental AG-221 medication. Friday I started my 9th cycle of the drug. Having very successfully completed 8 months I continue to be one of the best responding patients to this protocol.

Thanks Sarah, Ryan, Cason and Clare Paul for hosting us for the weekend. Also, thanks Dee Espey for traveling with us and entertaining us with your ways. Janine you are my life throughout all this adventure. Thanks for everything.

Continued Remission

Each day my strength improves.  My appetite is back to about 90% of normal, giving me much of the nutrition I need to continue in my recovery. Our last monthly visit to MD Anderson was April 2 and 3. My blood test results were very good. In addition to the routine blood testing I always have, this was a time to have another bone marrow aspiration. I also had a CT scan performed on my abdomen area due to the need to evaluate my liver, pancreas, gall bladder etc.  No significant issues were revealed in any of the testing. The bone marrow aspiration preliminary results showed my "blast" count was at 2 which is below the level of 4 when the blood cell factory gets out of wack. In other words my count is within the normal range of 0 to 4. My doctor's examination and evaluation was very good and he indicates I am still in complete remission.  Therefore, he approved my continued participation in the drug trial of the "AG-221". I am now in my 7th cycle of this therapy with excellent overall results.

On April 17th I had my mid-cycle blood tests at our local oncology clinic the results of which were very good, again. Virtually every blood count is within normal ranges. A small few indicators are a little low or high but nothing to be concerned about. The major counts, white and red cells and platelets are all within the normal ranges. This means my treatment is working very well. I have even gained back about 10 lbs in the past 6 weeks, a very good thing for me. My energy level is much better now as well. Gone are the days of extreme fatigue, fear of constant infections and bleeding without control. I have not had to have any blood transfusions since early October last year. That is a remarkable indicator since I was having frequent transfusions before then.

All in all I am better than I have been in over a year. While the treatment is not a cure, it is doing wonderful things for my quality of life. We pray for continued remission and even better days to come. Our next (monthly) appointment back at MDA is May 1 for a long day of testing with a doctor's exam.

Grace

Grace is that power granted one who does not deserve it. The grace of the Christian Faith, the "amazing grace" we sing about and the theology of grace puts it more in the definition of the life given us in Christ that we do not deserve. It is given us not because of what we have done to deserve it. Rather it was promised to us by God and freely granted. Bonhoeffer described it in much more details in his famous book "The Cost of Discipleship". He came up with the notions of cheap grace vs costly grace. Many of his writings are very difficult to read, not because of how he says it but because of what he says. Like Christ, he calls us to a life of discipleship, not as a means to an end but as the end to the means. We are expected to, required to live according to Christ because we are saved from even death and given eternal life. When we freely accept this grace but do not live a live worthy of that calling, we cheapen it. To live in Christ is costly and to that end we are his people, you and I.

Recently my mortal life was extended, once again. Honestly, I never thought I would survive more than a year with my condition as serious as it was. We were told I had between six and twelve months without treatment. After some very difficult treatment times with unsuccessful results things were looking very bleak. I was heading for a stem cell transplant or I would likely die in a few months. I even feared the procedure and it's heavy doses of chemotherapy would do me in anyway. What a change the past five months have been under the experimental drug we know as AG-221. An amazing grace of life when I deserve much less than most people has happened to me. If that doesn't make your skin crawl, it sure does for me. If you are not prone to believe then call it creepy. But if you believe in miracles you know that God has given me new life.

So this reflection ends with a new beginning. What is God calling me to do now? What does he expect us to be doing with the rest of our lives? More importantly, will we be like Joanah or will we do what he calls us to do? Will I go where I want to go, not where he wants me to be?

Prayer:  Father God.  Please call me to serve you wherever you need me the most.  Open my heart to you and clear my ears.  Amen.

Complete Remission

Yesterday Dr. Kadia said I am in "complete remission" from the MDS/AML we have been battling for over a year. This was not unexpected news because my test results this past month to six weeks were pointing in the remission direction. Last month Dr. Kadia used the word "remission" but not like he did yesterday. He believes I'm doing better than any of his patients with my condition. How relieved and excited we are!

We know this is not a cure. I will likely be on this drug for as long as it continues to keep me healthy. For now we are very grateful for this news and look forward to more improvement in the future. I need to get more strength, strength that comes from nourishment. My appetite continues to improve, slowly. It is a cycle of change I am trying to endure. I'm learning to eat different things that are high in protein and calories. Since my sickness begain I have lost over 40 pounds. This is weight I did not have to loose, so getting my strength up is closely connected to eating.  These are side affect issues for how my system reacts to this treatment. It is a learning process not without challenges. But all and all I am so happy to be producing good blood cells that appear cancer free, for now.

Thanks again for your continued prayers for us both.

Memories

As my recovery continues my long term memory is slowly returning.  I wondered if the various chemotherapy treatments I have had would permanently suppress my memory. Getting older also has taken a tole on all our memories, I suppose.

Last week Rachel visited while she tried to attend several Millsaps College committee meetings.  Rachel has often had an effect on my memory in a good way.  Maybe it is because she was such a big part of my life growing up.  So many of my recollections are not necessarily of Rachel, but of our family and the life we had together. I can remember details about people and places that most would think uncanny.  In fact, she was amazed at my memories because she was right there when the things I remembered happened but she did not have these memories. So it begs the question. Why can I remember such small often insignificant details of things that happened 50 years ago? How do I remember the places and the tiny details of locations? I really don't know the answer but usually enjoy these memories.

Because I have this memory for past times and the stories of our life growing up I enjoy "story telling" or story writing. Some of my memories often get confused with the stories that I heard from family members like my mother or an aunt or uncle or grandparent. So when I write or tell a story you may realize that I tend to embellish the truth. That's OK as long as I'm true to the people and places who were there. So it it that my memory of the classic Andy Griffith comical record album in the late 1950's is offered.  This record was done before the fame that he enjoyed on television when he was a country spun comedian and singer. I present one of the great story tellers of my youth presenting a classic:  "What It Was, Was Football"
It was my memory of our house in Meridian and the living room where the stereo console record player was located that brought back that Andy Griffith memory. We owned that record along with many others including a racy recording by Brother Dave Garner entitled "Kick Thine On-self". The five of us in my family would gather in the living room and enjoy listening to records together. Later, Daddy remodeled the house and added two new bedrooms and a bathroom. He also converted part of his basement workshop into a full-sized den complete with a wood burning fireplace. The new den was located directly under the living room upstairs so he installed two stereo speakers in the den's ceiling that were connected to the living room stereo. In that way we could remotely play our records and music without having to have a new record player in the den.

These two memories happen for me because I learned to unlock my memory by using a "key".

Mother's Chocolate Chip Cookies

The following post likely has little to do with my health...

My mother could make the best chocolate chip cookies I ever tasted. These morsels were the favorite of everyone in our family and continued to grow in fame and popularity as our family grew.  Over time we would get her to share her recipe and she usually would say she followed the one printed on the back of the Nestle's Chocolate Morsels (Chips) package.  We would do that and our cookies never tasted as good as her's.

In as much as I loved my Mother very much, I also grew to learn in time that she was a liar as far as her cooking went.  All of her great dishes that we loved so much never tasted as good when we cooked them following her exact recipes and instructions.  It was a running joke in the family that she had secret ingredients or techniques that she failed to tell us.  She loved knowing that we could never quite get the taste she could get.

Mind you it wasn't just her cookies. Her pimento cheese sandwiches (spread) was to die for! She made the best salmon croquettes and her homemade peach ice cream is a family classic. However, like so many good cooks of her day she was mostly using recipes passed down through the generations from family or friends and modified to suit the taste of the ones who would enjoy the results.

Sometimes, it was her technique that made things taste so good.  Or it was her cooking utensils or equipment that made the difference.  For example, while we pulverized our peaches in a blender she would use an old school, manual crank meat grinder to prepare her peaches. When you read her recipe it never explained to use a meat grinder. It just said to use 10 to 12 medium sized, ripe peaches, pealed and pulverized.  In the days when she perfected this gem the blender or food processor had not been invented yet.

So it is with the recipe for my health. Is it more about how to stay well than it is to get well? The science of this day and age, the great doctors and loving staff at JOA & MDA and the power of prayer have healed me. Well, maybe that is not totally true since I'm told my MSD can not be healed by mortals but it is still in remission.  Staying well is the challenge for me now.

The old school methods coupled with modern day's science could be the answer, I'm learning.  The best recipes are ones passed on from generations, modified along the way to suite our taste and to make them work better with today's ingredients. I sure could use some of Mother's Chocolate Cookies right now packaged in a gold fruitcake can.

The "Routine" Good

We returned home from a brief trip to the Houston area on Tuesday. The previous Friday morning I had my routine monthly appointments at MD Anderson. It seems strange to now refer to my visits there as routine. However, I suppose familiarity with my surroundings coupled with doing the same or similar things over and over makes for the routine. In my case, this is good.

The drug protocol requires visits every four weeks now that I have made it to the fifth cycle (each cycle being four weeks). So it was that Friday, February 6th found us waiting as usual for one test after another. Then we saw and were seen by our medical team who reviewed the test results giving us positive praise and results. To be as sick as I was, hearing routine good results is nothing short of a miracle. I pray for more of the routine!

Thanks again for all of your prayers and the many acts of kindness for which you continue to shower upon us.

Another Good Long Day

Yesterday was a long day of blood tests, doctor and research nurse visits and other testing. Most went well with very good blood test results. My White cell counts were up again this time within the "normal" range, a blessing. All but one blood test indicator was good. The only real concern was the count that measures my pancreas. It shot up very high to a point of concern. My doctor ordered an echogram scan of my abdomin, gall bladder and pancreas the results of which showed mild pancreatitis.  He said it was not very bad but to reduce my diet of fatty foods for about a week. This explains why I had a very bad intestinal stomach burning for a few days last week, we suppose.

All in all it was a good day because I continue to respond very well to the research study drug. Also, I was allowed to have my "PICC" line removed which was inserted back in July for all the intravenous chemo, transfusions  and other antibiotics I was getting. It was also being used for the numerous blood tests I was having but hopefully now that I will only be on a once a month schedule of visits to MD Anderson I want need it as much as before. It was a lot of trouble and expense to maintain so we are pleased to have that done.

We are back on the road again heading home. I get very tired from all the travel but rejoice in good visits with a very positive a prognosis.

Another Day, Another Year

We are sitting in the waiting room of the Research Lab at the MDA leukemia center prior to my 7:00am Friday appointment. This is supposed to be my 10 hour day of blood testing and other lab tests. We heard MD Anderson referred to by long time patients as "Most of the Day" Anderson where the M and D stood for your time to spend.  This morning is holding true to form since my scheduled time is for 7 and it is now 7:30 and the receptionist has just arrived.

So in addition to day light savings time (Not now), we enjoy MDA time! That's the change in your clock based on when you see your provider compared to when your appointment time is scheduled. Rarely do these times agree. Not that I am complaining, it's just the way it is here.

Hopefully, today wil be one of good results and that no other treatment will be required. Later this morning we see my doctor again for consultation and test review. Since last month's visit, we have made a list of questions and concerns for him. My biggest question is regarding long term prognosis and if the research drug will continue to be administered as it has been.

As time goes by new issues are discovered with the drug. Part of any study is evaluating these side effects. All of the participants like me get some negative effects that need documentation so we all can be advised. So each cycle we see what has changed and are required to re-sign consent forms, etc. This process is as important as the treatment. We will meet with my Research Nurse soon to do this and also to be given the next month's supply of drugs. At that time we turn in the empty pill bottle from last month and our completed daily diary of dosages taken. I am always required to to take the medication at a specific time each day and within a time frame "window"  

around eating and drinking. This is an unpopular time because for a three hour period I must "fast".

"Another day, another time...."

Preserving New Year's Memories

Several years ago I discovered some old video tapes. For you younger ones out there who are unaware, these were widely used in the 1980's to mid 1990's. It was the high tech method to record and later play back video things on your television (also an invention in the '40's and still used by older adults today). Like many of us I had amassed a large collection of TV recordings, movies and family videos made when the kids were very young. 

The VHS (Video) camera was also a popular gadget that seemed to replace the "old school" movie cameras of the day. I had both and was always at or ahead of the video technology of the times. So about 20 months ago I purchased a connector device that enabled me to connect a VCR player to my iMac computer. With software included, I began to transfer many of these family video tapes to digital format and store these on the computer.  This was a way to preserve these wonderful old images forever. 

The bad thing about tapes was how quickly these will deteriorate over time when not properly stored and cared for. My old collection was located in a few cardboard storage boxes in my outside storage shed. Extreme heat and cold for several years began to make these tapes loose their quality. Luckily I discovered this box of tapes before it was two late to digitize them. The process was very time consuming but quite rewarding because I began to reminisce about long forgotten events. I even discovered a small collection of 8mm and super 8mm movie reels I had made in the mid to late 70's also stored in the boxes along with the other video tapes. So I was able to rescue these treasures and digitize and transfer them to my computer also.

One of my favorite discoveries was two tapes from 1988 to 1992 that contained a few New Year's Eve parties Janine and I attended with about 10 to 15 good friends/couples.  Some of them had long since moved to other cities and a few are no longer with us, today.  It's not that we were big partiers back then. In fact neither of us drank alcoholic beverages except that I would enjoy a beer or glass of wine on such occasions. When the "ball dropped" over Times Square Janine and I were always sober. Since it was only 11:00pm in Jackson trying to stay awake another hour until our New Year rolled in was difficult for us because we rarely stayed up that late. But we thoroughly enjoyed these times with good friends ringing in the New Year.  These old videos showed our fun and also revealed how, with the passage of time, we had changed much like the old recordings had begun to deteriorate.

As we approach yet another New Year's tonight, I will probably be in bed asleep by 9:30 or 10:00pm at the latest.  The body and mind want let me "party" like I once did. But the memories of ringing in past New Years still holds a fond place in my heart. May you all have a fun, safe night whether with friends or family. Preserve your memories and look forward to a better year in 2015 for us all.

Family Makes A Big Difference

I have felt better today than I have in a very long time. My sinus crud has just about stopped. My appetite steadily improves each day. Having Grandchildren around lifts my spirits.  James, Taylor, Helmi and Mo arrived last night after their long trip from South Carolina where they picked up Helmi.  Immediately our house was once again transformed into to a "home" with all the warmth of the Christmas holidays. After opening gifts, I went to bed about 10:30 pm.

This morning we went to worship services and took Helmi and Mo with us. They were the stars at church and the only two children who participated in the Children's Time with our associate pastor. We were once again greeted by many well wishers who we had not seen in a long time. It was so good to make our third straight worship service.

After being able to spend Christmas with Sarah and her family we now have had a complete Christmas by being with all our children, grandchildren and spouses. While we could not all be together at the same time this year it was still a great Christmas. Six months ago I wasn't sure if I would see another Christmas so this was wonderful to behold.

Christmas Eve

Yesterday I had blood test on day 15 of cycle 3 of the AG-221 test drug protocol. For the first time in several months my White Cell count rose to a very good level. That count had been slowly trending upward for several of my last tests over the past two weeks. This time it jumped up very quickly to 3.5. It is still below normal but so much better than before.

The White blood cells are the ones that fight infections. Because my counts have been so low for so long, my doctors have me taking several strong antibiotics, antiviral and anti fungus medications. While this helps to prevent infections, the side effects often make me sick in different ways. Hopefully, I may be able to get off of, or at least lower some of the dosages in the near future. We already know that my bone marrow "blast" are in remission. This latest blood test results means my "factory" is producing good cells again. With that my healing should continue.

On this evening before Christmas I am filled with the Joy of the season.  We attended the Candlelight worship service at The Woodlands United Methodist Church with Ryan, Sarah and Cason Paul. It was a beautiful, contemporary service with over 2,500 people in attendance. That many people hearing God's message, singing Christmas hymns, and sharing the light of Christ was truly amazing. 

As my recovery progresses and my healing increases I am mindful of the gift of prayer and the light of Jesus shared by so many.  Thanks for giving me the strength to join in this beautiful time with you, oh God. Merry Christmas!

Christmas Wishes

Dear Briarwood Church Family,

Janine and I are grateful for the numerous cards, phone calls, emails, letters, gifts, visits and especially your continuous prayers.  We miss being in worship, Sunday school, Wednesday night fellowship, circle meetings (especially Robert) and all that we love about being with you in person. You have kept us on the top of your concerns far longer than you or us ever imagined would be necessary. Yet, you continue to show us your unconditional love.

Thank you from the bottom of our hearts. You are our partners in our health struggles and without you, we would be lost. God has blessed Briarwood with an abundance of Saints and Angels who care for the sick and weary with grace and dignity.  We are so fortunate to be a part of such a loving, caring congregation.

Likewise, He has blessed us abundantly and continues to watch over us, love us and care for our daily needs. You are true disciples of God’s love, power and grace.

We love you all,

December 20, 2014

I recently sent the above letter to our beloved church family.  However, I know that it could just as well have been penned to everyone who knows us and has been part of my healing improvement. Your  love and prayers do matter so very, very much to us.  Yes, we are fortunate to be a part of such a loving, caring family.  God has showered us with friends who refuse to forsake us in our hours of darkest despair just like when you were with us during the times of great joy in our lives.

2014 has been a difficult year for our family.  From my awful diagnosis of MDS to the tragic death of Fran and Amelia's dear sister Susan Mayfield, from the loss of her beloved husband Bill to the terrible news of our cousin Johnny Watts' death in his house fire we have felt the anguish of misery.  Yet as we approach the celebration of Christmas I am thankful that we have such a loving God who provides as much goodness in our lives as we can likewise deserve.  From the miracle of Christ's birth to the terrible death he experienced on the cross, for his life on Earth that filled so many of his followers with hope and love to the salvation of his resurrected power we rejoice in this season of Christmas love and joy and giving.

My prayer is that we will see a brighter New Year in 2015.  May we then sing and dance with praise and wonder and joy even though our hearts are filled with sadness.  We are called to minister to those whom Christ loved and served during his short time on Earth.  We carry his Cross now and God loves us more than ever before.  May your gifts be to the lowliest of his people to the greatest.  Let us give hope where there is hopelessness, love where there is hate, laughter where there are tears of sadness, peace where there is war and the abiding power and goodness of God's love and grace shared to all we come in contact with on a daily basis.  

Merry Christmas!

Cycle 3

We had a great check up at MD Anderson today. Though Dad has been battling a cold/sinus crud since Thanksgiving, he's been feeling better and better this week (I think Texas suits him well).

His lab work and most recent bone marrow tests show that the drug he is on is WORKING and his MDS is still in "remission". Most of his blood counts have been steady rising since he started the drug. His white counts and the others that we all really watch for infection jumped right after the protocol started but had been steadily sinking. They appear to finally be on the rise again which, we were told, is what they expect to see and what we hope to continue to see.

The doctor was very pleased and said he doesn't have many (any?) patients with counts as good as Dads. He told us that the drug Dad is on is still very much the topic of conversation at their big conference that he attended this week.  They are seeing 30-40% response and while that may sound low, for a cancer with no cure, this is great. 

Mom and Dad will head home tomorrow for a few days then return again the week of Christmas for their last "day 15" check up.  Starting in Cycle 4, its just a monthly visit so we all are looking forward to less time at MD Anderson (though what an amazing place, and it does sort of feel a bit like home to Mom and Dad now).

--Sarah

Hoping for Better Days

Since we got home last month my expectations of getting back to a more normal routine just didn't happen.  Instead of being able to get out and see friends and attend church services, it was more of the same periods of home bound isolation.  I developed a lingering period of nasal congestion with an ugly cough and the yucky feeling of having the winter crud. To make matters worse, my old ingrown toe nail got infected again so I had to have more treatment on it. Recovery is taking very long with daily Epsom Salt foot (toe) soaks and wound dressing changes.  (Janine's workload never ends.)

The positive side was that we were home for Thanksgiving. Janine prepared a wonderful, traditional meal with turkey and our favorite dishes.  James, Taylor and Mo came up from Hattiesburg and spent several delightful days with us, adding family warmth and love to our home for the holidays. Even though I was under the weather, their presence was so special and enjoyable.

Today, marks the first time I have felt somewhat better in over a month. I apologize for not keeping this blog up to date lately. Maybe I can do better as I start to feel better.

As for my MDS condition, things are progressing well with the treatment.  I just completed the 28th day of the second cycle of the experimental drug.  My routinely monitored diagnostic test have been good, even though my red and white blood cell counts were not as high as we had hoped. We will be back at MD Anderson midweek through Friday for more testing and begin the 3rd cycle of treatment if my results are still good.

Homeward Bound

This has been a very good 6 weeks.  I started my study drug clinical trial chemotherpy with better than expected results.  Almost every week, my lab test results have continued to improve. Today marks the start of the second monthly cycle of the treatment. It will once again be a long day of testing with another bone marrow aspiration later this afternoon.

We will leave Houston tomorrow morning after we check out of our apartment. We plan to go see Sarah and family tomorrow and probably will spend the night at her house and get an early start heading home on Wednesday. My next return to MD Anderson is scheduled for Monday, November 24th so we get an approximate two week period at home. After six weeks consecutive in Houston, this will be a welcome respite.

I have been feeling pretty good most of the time since my last post two weeks ago. I still do not get as much restful sleep as I would like but hope this may get better once I'm home, in my own bed. Likewise, my appetite is not as good as we would like. Home cooking should be the ticket for this as well.

If all works out during our first few days at home, maybe I will be able to get back to seeing friends more often, attending Sunday school and worship services and getting back to more routine parts of life. 

Week #2 Good Results

Monday was day 15 of my 1^st cycle of the experimental drug known by us as “AG-221”.  This was another long day of testing with 9 blood draws, an EKG, chest x-ray and a bone marrow aspiration.  The first blood test review that morning was very good. This was the first time since my initial diagnosis in February 2014 that my White Blood Cell count was up to a “normal” range. (This count more than doubled from a week ago).  Also, my Red Blood Cell and Platelet counts, while still lower than normal, were significantly improved.  We were thrilled at such a good report!  This seems to indicate the experimental treatment is working for me.

It was ironic since I had felt very poor on Saturday and Sunday with nausea, diarrhea and extreme fatigue. Early Monday morning prior to my first appointments, I was feeling so ill that I almost cancelled my day of testing knowing how difficult over 12 hours of this is on me when I feel healthy not to mention the toll it would have with me feeling sick. However, we toughed it out and went on for as long as I could.  As the day went on I felt strong enough to continue and finished on such a positive note of encouragement. Hopefully, they can get this nausea, diarrhea and fatigue under control and it is not a long-term side affect of my treatment.

Mentally and emotionally, I'm very encouraged. We still have a long way to go with my treatment and understand setbacks can happen. For now, we just have to believe in the healing power of good science and our faith in God who makes all things possible.

Successful First Week

Another one of the marvels of this cancer journey is the actual travels we take.  As often as we can, we prefer to ride the shuttle bus that is offered as a “free service” by our apartment complex for residences.  Since we are less than 2 miles from the Texas Medical Center District, most, if not all of the riders of our shuttle bus have some connection to one of the hospitals or medical clinics. Patients like us as well as a variety of health care professionals and students can be found riding the shuttles everyday.

This is a somewhat unique experience for us.  The last time we rode buses for any period of time was when we were in junior high school riding the bus everyday to and from school.  Now living in a large city is the real difference maker. Mass transit was always been a term associated with strange places like New York City or Chicago.  So for us, riding the shuttle back and forth to MD Anderson has been an interesting experience. First of all it beats driving our own car and then having to park. Parking is only available in the medical district in large, pay lots and garages.  The garages near or attached to MD Anderson cost $12 per day with a $5 minimum.  So if you will be there any significant length of time, $12 per day gets expensive.  So it just makes more sense to ride the free shuttle.

Secondly, the wear and tear on your vehicle, not to mention on your mental state, can get to be difficult when you have to fight the local Houston traffic. The shuttle drivers handle this task so easily. Finally, the most interesting part of riding the shuttle is the people we encounter.  This journey is not just a brief hop to and from treatment.  It is a trip of shared experiences, new mutual friendships and complete strangers placed into brief encounters with each other. 

Yesterday, we witnessed such a moment of kindness by our driver.  One of the passengers was a young woman, medical student who apparently rides the shuttle daily.  The driver knew her name and even knew some personal things about her. On this day the student needed to stop at a different building in the middle of a busy block to meet one of her advisors. She told the driver she would get off at a nearby stop and walk across the street to her destination.  The driver insisted she not try to cross the street in the middle of a block so she took her to the nearest intersection of the building’s location not even on our bus route.  She told the student “I don’t want your momma calling me from Chicago about you getting hurt on my bus route”.  This was such a sweet thing to hear and see.  Two people from completely different worlds being so nicely connected, if ever so briefly.

Maybe this is what my cancer journey is really all about.  I travel to get treatment for an incurable disease hoping to live longer and find even greater cures along the way.  Healing is more than what meets the eye.  It is the precious moments of life’s journey that gives us cause to pause and reflect on what life is all about, in the first place.

So far my new medication is helping.  I have not experienced any significant poor side affects. My lab tests are improving sooner than we had expected.  If things continue like this we may be able to go back home to Mississippi in a few weeks.  We will continue on this course of medication and close testing until November 10^th.  Then we hope the medical team will allow me to continue taking the trial medication from home.

A Long Friday

Day -3, -2, -1. That's not so much a count down as it is the way my study kicks off. The official start of my 28 day cycle begins tomorrow, Monday, October 13th. However, yesterday was Day-3. On that day I took my first dosage of the drug at 10:30 am after 8:00 am lab tests. Then I was monitored very closely for the next 10 hours until 8:30 pm. So we were at MDA for over 12 hours, yesterday. It was a long, tiring day with hourly lab tests. I was given one dose of the drug, 10 blood draws, 5 EKG's and 3 urinalysis tests.

Yesterday was Day -2. It was a much shorter day with a single blood and urinalysis test at 10:30 am. Likewise, today, Day -1 will be a single testing day at 10:30 am. Then we begin the 1st study day tomorrow morning early at 7:15 am.

Those of us at MDA who were recently added to the study were required to do these days -3, -2, & -1 in order to see how we would react to the drug's toxicity. They also wanted to give us higher doses of the drug to put us at the same dose level as participants who have been in the study, previously. They would have gone through a 28 day cycle at lower levels then moved up to the higher doses like I will be taking. Since we are the first humans to receive this drug, the protocol is very tightly controlled and regulated. Other than for the inconvenience of having to spend so much time at MDA, it was uneventful for me with no side effects. 

Over the next 28 days I will take the medicine once a day, mostly from our apartment. Monitoring will be done in the clinic, but on an easier schedule of about  once to twice a week. As with my pre-study testing, post study testing will be done with another bone marrow aspiration/biopsy among others. The goal is to see better bone marrow resulting in improved blood counts. Then we see where to go from there.

God's Sense of Humor

Having to pee in a cup has always been a challenge for me. Men just don't pee on demand like women can. We also don't hold it on demand either. So there is a very short window of opportunity for me and a urine analysis. I'm reminded of the time in 1971 while going through out processing trying to leave Vietnam. The US Military had instituted a policy that required all returning service personnel to have a drug urine test prior to going home. In my case, we first traveled to one of three out processing centers know as transit centers. Typically you stayed there anywhere from one day to one week, depending on how many solders were being processed in or out. I left RVN in September 1971 when a large withdrawal of troops was beginning so it took me about 3 days in the transit area before my flight manifest was assigned.

So the very first thing you do upon arrival at the transit center is go into a large latrine area for the urine sample to be collected. Mind you, this is no simple urine analysis procedure. Far from it! Peeing on demand while standing at a large urinal that resembles a horse feeding trough with guys on either side of you doing the same thing and with MP's standing above you on guard platforms holding M-16 rifles while watching you carefully is not the best way for me to pee in the cup. The pressure of knowing that if you can't pee, you can't leave Vietnam is unbelievable. And so it was as I stood there for what seemed like an hour doing everything possible trying to make it happen and I'm dry as a bone. Mentally I'm writing the letter to my parents and Janine telling them I may be delayed a day or two longer because I can't pee in the cup. 

The whole reason you are watched so carefully while doing this nasty task is so that you can't swap your "sample" with someone else's, thus avoiding drug detection in your system. I didn't do drugs, I just couldn't pee on demand. Still can't!

So it is with God's great sense of humor that I offer this story. Throughout my entire ordeal since January 2014, I have never been required to give a "sample" for urine analysis. That changed last Friday and yesterday. One of his angels in medical scrubs hands me the bio-hazardous baggy with the infamous little cup inside and instructed me where the bathroom was located. I told her I do not like surprises especially when it comes to my being required to pee on demand. You see this is not easy for me. So I tell her about the Vietnam thing and figure she will have sympathy on an old sick veteran. She didn't even know where Vietnam was nor that we ever fought a war there.

Luckily, I had forgone my urge to go about 30 minutes prior to getting to her area of the clinic. Equally as fortunate for me was that I had consumed some Gatorade earlier as well. So this time I made it without too much trouble. I was however a bit concerned that my output was not enough for their lab to use, but I gave it my all. I wonder if that is why they made me do it all over again the following day (yesterday). 

God smiles in mysterious ways!

We Made It In The IDH2 Study

Just a quick update to say that I was accepted into the IDH2 Study. I started with preliminary testing today and will continue more test for several days next week. We are scheduled for my first treatment (pill) on next Friday or Monday October 13th.

The protocol is pretty intense with numerous tests along the way, in addition to the actual treatments. So we will be in Houston at least 6 more weeks, if not longer. I hope to post much more as the days go by.

Apartment Search

We haven't lived in an apartment since 1975, the year we moved to Jackson. (Except for a temporary apt. stay after the '81 flood.)  Prior to that, apartment living and the search process was a common task during our first four years of married life. Now nearly 40 years later securing an apartment has been challenging, if not interesting, to say the least. For the most part we have been "looking" sight unseen from our home in Jackson for temporary, furnished places in the medical center area in Houston. Phone calls, internet searches wth photo/video views, friends and family referrals and listings from our MDA social workers have been our main tools. For the most part we concentrated our search on the places that offer subsidies to Cancer patients. So we got on several wait lists but could never get anything confirmed. 

The biggest deterant to the process has been not knowing exactly when we would need to move in. My condition just does not lend itself to proper planning. So having grown weary of this process and the emotional stress that goes with it, we decided to be more proactive and look in the temporary, non subsidized market. We set Friday, October 3rd as our move in date regardless of the uncertainty. This resulted in several strong choices in more desirable locations with better amenities. The furnished places that allow short term leases are expensive but very nice. So we secured a place in the Medical/University (Rice) area and have signed a month to month contract. We travel today back to Houston for appointments at MDA on Friday morning and will move into the apartment Friday afternoon, barring any changes in my schedule.

So it's "On The Road Again" for another day of enjoying the highways and byways of Mississippi, Louisiana and Texas. We will miss our MS home and friends for now but want miss all the travel back and forth to Houston. I'm going to get me some cowboy boots, a 10 gallon hat and a book that teaches how to say words like riiiiiiiight and tiiiiight correctly. "Go Texans" but not "Aggies" this week-end!

    

New Treatment Options

We traveled to MDA on Thursday and spent the night at the MDA Rotary House to be close to my clinics for the Friday blood tests and appointment with Dr. Kadia. I was also able to meet Lori Griffin, our Stem Cell Transplant Coordinator, that Friday morning after my blood draw.  She and I have talked on the phone several times but we wanted to put a face with a voice. She is a delightful person and was so accommodating to us. Her latest news was that the potential donor had requested a different sample collection site than the original one in their enrollment on the registry. This puts a further delay in getting the transplant done anytime soon according to Lori. Unfortunately, they can't tell us how long or when we can proceed.

Doctors Kadia and Jones (transplant Dr) have collaborated on a different plan. Neither one of them want me to do another round of the chemo that was in my current trial because it left me with such a hard recovery and the next round could jeopardize my having the stem cell transplant any time soon. Since the above donor delay will likely delay things anyway, it seemed a good time to try to get me approved for the new "study" we noted in a prior post under "Change of Plans". Also, this new approach is appealing since it is not chemotherapy but a medicine aimed at a very specific genetic cell group. Likewise, the side affects appear to be far less than chemo effects me. During our appointment with Dr. Kadia he advised that I was the next person on the wait list to become a part of a new study presented at the 2014 American Association for Cancer Research (AACR) Annual Meeting AACR that showed promise for a new targeted therapy for acute myeloid leukemia (AML) as well as patients with High Risk MDS. The drug, called AG-221 (Agios), is targeted to the isocitrate dehydrogenase- 2 (IDH2)-mutant protein expressed in AML. This is the IDH2 inhibitor believed to be the source factor in the progression of my disease.

If all goes well I should get a slot by sometime next week according to Dr. Kadia. Then we will go back to MDA to begin the preliminary testing in preparation for my treatments. This is now scheduled for next Friday, October 3rd provided I get an open slot by then. We will be having a minimum stay of 28 days. The protocol consists of a daily oral dosage of a pill that can be administered by us where ever we are staying. Unfortunately, that can't be at home in Jackson because we must be blood tested and closely monitored by our MDA team according to the study guidelines.  

So it looks like we are seriously looking for an apartment or extended stay housing instead of the expensive daily rate hotels we have been staying in during our shorter stays. We are on the wait lists for a few near the Medical Center that offer assistance to Cancer patients although it's unlikely we can get into one of these on such short notice. Likewise, some of these require a stay of three or more months. Since we may not get to the transplant phase for several months we are once again in the "unknowns" of logistical planing. We are hopeful something can be found to meet our needs.

Needless to say, I am delighted to not be taking another round of chemo right away, yet apprehensive about the new study and whether it will work for me. I guess you can say we have become health care pioneers in this journey. I've often wondered what it would feel like to be a "Guinea pig", so now I will find out.

Waiting For News

I contacted my Stem Cell Coordinator, Lori Griffin, at MD Anderson yesterday to see if we had any word yet about the donor being available for the transplant. She had not but told me it takes several days to a few weeks because all communication transpires between her and the national transplant registry officials.  They do all the communicating with the donor  to keep them anonymous. She hoped she would get word before we go for my next chemo treatment on September 25th. 

That appointment may get postponed since Dr. Jones and Dr. Kadia know how hard the first round of chemo was on me. They want me healthy as can be expected before either more chemo treatment and/or the transplant process begins. Sometimes it seems like a "catch 22" in that everything is dependent on my "Blast" percentage as well as my strength. That blast number dropped to 4% right after my last chemo treatment, indicating it worked. However, 3 weeks later, without more chemo, the blast went up to 8%. It's very likely that by the time of my next appointment the blast may be right back too high to do the stem cell transplant. Thus the "catch 22", more chemo weakens me so that I may not be able to do the transplant but the reduced blast from the chemo make the transplant more possible. Hopefully, we can overcome this dilemma soon.

As for my overall recovery at home, things are going very well. My appetite is almost back to normal and I've gained back about 10 lbs of the 20 lbs I lost during the 5 week ordeal of my treatments and the pneumonia occurrence. So my strength is better and I'm more stable in my standing and walking, too. I still get tired very easily when I do too much. Later in the day to early evening are still my worst times of fatigue. But I'm encouraged as each day brings more and more strength. I need that so I can do more exercise to get my muscles strengthened as well.

So we continue to wait for good news about the transplant.

Traveling Home Again

We're on our way home again, having stopped along the way in Ruston, LA about 6:00 pm. Janine was tired from the drive and a lack of peaceful sleep the night before. Like Sarah she worried about what would be said by my Doctors. After the good news however, we didn't get on the road until about 12:30 so we needed to stop and rest instead of pushing our trip home in one day/night. I was very tired, too. We both crashed into bed about 8:30 pm and didn't move until 5:30 am (well not counting bathroom breaks throughout the night).

If you haven't read Sarah's post yesterday, please do. She put into words the best description of my Dr. visits. Thanks again, Sarah. You're the best daughter, EVER! She has become our recorder, our "sponge" soaking up every important detail that often goes unheard by Janine and me. Really, her post was longer than most but far more informative than I could ever write.

Once again, we look forward to getting home and resting for a bit. The travels (all by car) get tiring. We could fly, but to us, that would be even more stressful. Driving also gives us the freedom to take more "stuff" with us. When we go to MDA for appointments and treatments we never know for sure how long we will be there. So we pack with a lot more clothes and other necessities that could never happen if we flew. 

Recently I commented on decisions we need to make about important matters . Now that our treatment plans have become more focused and we just about have a timeline set, we know we now need to secure long-term (3 months or more) housing in Houston, in or very near the Medical Center area. They tell us to always be less than 20 minutes from MDA. Given Houston traffic, that is about 5 miles or less from the hospital and my clinics. We are enrolled on three apartment wait list that offer low rates for people in cancer treatment. Some are even free but these have long wait list so we likely will need to seek other options. Always unknowns to deal with!

So yes, we go home, rest, fatten me up while getting me fit and take care of household matters, again. We are happy and thrilled to be where we now are but still apprehensive about our next steps. God is good!

MATCH

Today was a good day.  I had a rough night sleep, anxious about what they would say at the appointment today.  I'm my mother's daughter, I worry.  I was trying not to get all excited about the "Perfect Match" that Dad's transplant coordinator (Lori) told him about on Monday.  I was trying to prepare myself that the Bone Marrow Team would tell us Dad was not well enough for the transplant.

But all that changed about 9:45.  Prior to our meeting with Dr Jones and Team, Dad did a pulmonary test and did pretty well for a guy with COPD, probably a bit of lingering pneumonia and still recovering from chemo.  Mom and I could barely keep up with him walking around the hospital from the lab to the cardiopulmonary center to the Stem Cell department.  Such a change from 2 weeks ago when he was slow moving walking with a cane.  He was walking like that guy that used to walk 10ks!

Dr Jones PA (Richard) confirmed all the good news we'd heard from Lori and also said he'd (barely) passed the lung function test for the clinical trial they want to put him in... the STEM CELL TRANSPLANT trial. He's ready, we have a perfect match, its time!

Dr Jones spoke with us at length and answered all our questions.  He would like to push the Transplant Center to make this happen FAST, like in 4-5 weeks.  He's trying to keep Dad from doing another round of maintenance chemo so that he can continue to gain weight and can continue to exercise and can continue to get stronger.  He needs to be STRONG physically.  He doesn't care about Dad's blood counts (that are low)... he's going to kill all those before the transplant anyway.  He just needs dad to fatten up and get his lungs as healthy as he can.  We can do this!

He explained that dad fits well into a clinical trial that they are studying using existing combo of chemo but in a different sequence that they believe will improve effectiveness while reducing toxicity.  Since Dad had such a rough go of the last round of chemo, is older, etc, they think this is the right path for him.  He has to have 50% lung function and he squeaked in at 51%.  They think that will continue to go up as he continues to gain strength so they are not worried he wont qualify.

We will also have to wait to make sure his Leukemia doctor doesn't object and thinks he's okay to go 4 more weeks with no chemo.   It's possible he could still start the new drug if that works out but we don't know any details on that yet.

Lori will let us know this week on dates.  They will ask the Transplant Center, who will work with the donor, to get this done as soon as possible.  If all goes well (the donor could have conflicts that require us to push back), we are thinking Dad will be back in about 3.5 weeks to start his final preparations and then a week of chemo.  The Transplant would then happen after the chemo and we'll go from there.  It's looking like Mom and Dad will have a Houston Thanksgiving and Christmas and we'll say goodbye to 2014, ringing in 2015 on the road to being cancer free!

We should know more details by the end of the week.

Today... we are excited and focusing on the end game... a cure.  We know that this process is going to be HARD on Dad physically and emotionally.  It's going to be hard on the rest of us in different ways.  The remainder of 2014 is going to be rough.   But today, we are looking to the future.  To more family vacations.  To many more years of memories.  We are relishing in hearing the Dr say things like "you'll be seeing us for check ups for the next 4 years" instead of things like "6 months untreated".

More later!

--Sarah

Three Days of R & R

We are tired. Janine has been working like a dog tending to me and doing everything imaginable.  Having three days off to spend with Sarah, Ryan, Cason and Claire will be a great treat and diversion. We left MDA around 10 am this Saturday morning and drove up to their house, arriving a little after 11 am. I wish we could go home now but we have appointments on Tuesday of next week with the Stem Cell Transplant Team. We are so grateful that Sarah and Ryan live close by. When Ryan built their house he added an extra bedroom suite complete with a full private bath room on the ground floor for guests. We affectionately call it the "Mississippi Room" because it is decorated with memorabilia from Sarah's home town, Jackson and from our beloved "Dalewood" Lake near Meridian. When we visit them it becomes "Neanie & G-Paw's room, however. Thanks y'all for letting us stay with you for a few days.

If all goes as planned we will finish up at MDA sometime mid to late Tuesday morning and head back home until September 25th, when we travel back for treatment. The likely possibility of having a stem cell transplant in the near future is very encouraging. We know that process will change our lives for several months, having us move to Houston for a minimum of three months with numerous trips back and forth after that for about a year.

We have major decisions to consider as we approach all of this. Do we sell our Jackson house and permanently move to the Houston area? Leaving behind our church family and friends would be unbearable. Yet we can't afford to maintain two homes so far apart at this stage of our lives with constant travel back and forth between the two. Decisions!

In spite of our many concerns, I remain optimistic that God has a plan for us that we have never imagined. He will provide us with strength to do what he wants us to do. I just pray that we will have the courage do his will, not our own desires.

IDH2

To follow on Dad's last post, what I heard Dr K say is that dad has an IDH2 mutation and that a very new drug study has shown great promise. It's an IDH2 inhibitor that is not toxic like chemo.

I found these two articles that explain this drug and the positive results.

Maybe this will be a door opening to a more tolerable treatment!

http://www.fiercebiotech.com/press-releases/new-agios-clinical-data-ongoing-phase-1-trial-ag-221-continue-show-complete

http://www.onclive.com/publications/obtn/2014/June-2014/IDH2-Inhibitor-Shows-Promise-in-AML

Science is pretty amazing!!!

--Sarah 

Change of Plans

We met with Doctor Kadia earlier today than originally scheduled. His nurse called this morning and ask me to get my labs done this morning which got me in to see the Dr about 2 hours earlier, also. He decided to hold off again on my chemo treatments for two more weeks. So we will be able to go back home on Tuesday after we see the Stem Cell Transplant team that morning.

For now I am currently in the Infusion Clinic receiving two units of red blood cells and two units of Magnesium. We started this about 5:30 pm so in 4 hours or there about we should be released to go back to our hotel. So the "roller coaster ride" continues. Saturday, Sunday and Monday will now be off days so we plan to check out of the hotel tomorrow and go spend this time with the Pauls.

A new development was revealed by Dr. Kadia today. He said a new study was being done which he thinks I could qualify. I don't remember all the details but it sounds most encouraging. It was described as being in the experimental stages with only 15 patients nationally in the study. He said there are a few more slots available so he was going to see if  I could qualify and get admitted. Apparently, my specific cells have an infection that can be treated with a new drug in the study that only a few people like me have. This is a far less invasive drug than I'm currently on. He thinks continuing on the trial may still be necessary but if I can get approved for the new study in a few weeks we will try that first. So we are hopeful this can come to happen. It may be a long shot because many other people throughout the country will be trying to get included. So stay tuned!

El Chaparro Mexican Restaurant

While we sat in the long drive in line at the What-A-Burger in Jackson, just before we hit the road to Houston, I told Janine I wanted to travel the "Southern Route" via I55 South to I10 West coming into Houston closer to MD Anderson than if we went our usual, Northern route. You would have thought I told her the "sky was falling". Janine doesn't handle change very well. She likes the familiar, even when it's 50 miles or an hour longer than trying something different. So as we started out heading south on I55 I could feel her uneasiness growing and her protests getting stronger at my decision. When we turned onto the brief stretch of I20 West before I55South branches off towards South Misssissippi she decided to stay on I20 heading towards Vicksburg, our normal route. After all, she was driving, so it was her call. When you are at the wheel, logic prevails, even if the facts are against you. She is wiser than most.

So I started calculating the cost of her error in judgement and quickly discovered we should make it to Sarah and Ryan's house in Wood Forest by 5:30 pm., if we wanted to wait out the Houston rush hour and get in a brief visit with them and our precious grandchildren. It was at that moment that I thought of my favorite Mexican restaurant, El Chaparro. It's real close to their house so I figured we could meet them there, if they didn't have other plans. I sent Sarah a text message about the possibility of this without first asking Janine. Why rock the boat again with the "queen of change"! After about 5 minutes, Sarah replayed she was meeting her girl friends for supper but that Ryan and the kids would like to go with us to El Chaparro. (Not surprising as it is one of Ryan's favorite spots, as well.) Now that I had it set I broke the news to Janine. She laughed because she was now off the hook for whimping out on the change in my route choices.

We met Ryan at the house at 5:30 pm as planed. After a brief visit we left to get gasoline in route to the restaurant while Ryan picked up the kids from the day care. We all met at El Chaparro a little after 6 pm.  It was a delightful time, the kids were in great form and behavior. They have grown and blossomed into wonderful children, adorable and so very smart. Claire sat in her "Neanie's" lap  

the whole hour we were with them. They just bonded, warming each other's hearts and souls. It is beautiful to behold. Ryan, Cason and I enjoyed our meals and "man" bonding, as well. Thanks Sarah, we missed you, sort of.

I Hear Them All - 911 Remembered

I know my words may not be well received by many of you but I am compelled to write anyway. This song by Dave Rawlings beautifully says how I feel about our need for peace. On this 13th anniversary of 911 when we remember the terrible losses our people suffered at the hands of terrorist it's easy to call our nation to arms, once again. But please also remember the many sons and daughters, husbands and wives, brothers and sisters who have been lost and the countless ones who will be in harms way when they are called back to unnecessary, winless conflicts in the Middle East.

"I hear the crying of the hungry in the deserts where they're wandering Hear them crying out for Heaven's own, benevolence upon them.Hear destructive power prevailin', I hear fools falsely hailin'

To the crooked wits of tyrants when they call

I hear them all, I hear them all, I hear them all

I hear the sounds of tearing pages and the roar of burnin' paper

All the crimes and acquisitions turned to air and ash and vapor

And the rattle of the shackle far beyond emancipator

And the lowliest who gather in their stalls

I hear them all, I hear them all, I hear them all

So while you sit and whistle Dixie with your money and your power

I can hear the flowers growin' in the rubble of the towers

I hear leaders quit their lyin', I hear babies quit their cryin'

I hear soldiers quit their dyin' one and all

I hear them all, I hear them all, I hear them all

I hear the tender words from Zion, I hear Noah's water fall

See the gentle Lamb of Juda sleeping at the feet of Buddha

And the prophets from Elijah to the old Paiute Wovoka

Take their places at the table when they're called

I hear them all, I hear them all, I hear them all

I hear them all, I hear them all, I hear them all

I hear them all, I hear them all, I hear them all"

Anticipation

We are sitting in the waiting room at JOA on Wednesday morning, having just had my blood drawn for my twice a week CBC tests. One of our favorite nurses, Angela, did the blood draw. I will see a different nurse next to discuss the test results. It normally takes between 15 to 30 minutes after my blood is drawn before my results are available. This morning, the clinic is busy with a lot of chemo patients so this may be a very long wait.

My anticipation is whether or not we will be able to leave tomorrow for MDA for my Friday through Tuesday treatments. Last week we got postponed because my blood counts were too low for me to do the next round. So today we face the same possibility. Janine wants us to go no matter what my counts show because we really need to talk to my Doctors about several things. As usual, she is right!

On a positive note, I spoke with my MDA Stem Cell Transplant Coordinator, Lori Griffin, yesterday. She told me they have two very strong match possibilities, one of which has already been contacted and has submitted their blood to my team for further testing. She was very optimistic this one will be an exact match, but could not say for sure until the blood testing is completed this Friday or next Monday. So our "anticipation" is for this outcome, as well. I try not to get too excited because it is such a specific science, and the process may rule this person out, even if they match due to any number of reasons. The other strong person for a match has not been tested yet, so they may only get contacted if the first one is not a match or ends up being unavailable to donate. That process is very donor dependent. We are pretty much at their mercy and just have to patiently wait for the coordinator to get everything lined up. We also set up a new appointment with Dr. Jones, our Stem Cell Transplant  physician for Tuesday morning of next week to further explore the process and be more closely examined to get me healthy for the coming transplant.

We are now home from JOA with the latest blood test results that were not improved, even a bit lower than on Monday of this week. Luckily, it didn't take as long as I thought. No infusions of red blood or platelets were needed, too. So we just continue gettting ready for tomorrow's road-trip to Houston with "Anticipation".

Appointments Postponed

We were in the process of packing and loading the car this morning for our MDA Houston trip, when I got a call from my doctor's nurse advising me to wait a week before going back out there. It seems my blood counts, taken here at Jackson Oncology over the past week, were not good enough for me to withstand my next chemo treatments. So we get an extra week at home, a mixed blessing. On the one hand we wanted to get this second round done now, but understand the delay. Otherwise, having this extra week allows me to get my strength and counts up to a better level. Plus, we both need this time to rest more and to better organize our household matters like paying bills, paperwork filing, house chores, etc. While this past week was a much needed rest for us, we really didn't get near accomplished what we wanted to get done. After the long 5 weeks at MDA we were so exhausted we took our time recovering and put off some things that we can now get done.

As for me and my health, I'm still in the fight. My blood counts remain low and the numerous medicines for infections I am taking make me very unstable everytime I stand or stay on my feet more than 4 or 5 minutes. My breathing is also labored at these moments.  The common side effects of most of my drugs cause me issues ranging from dry skin to nausea not to mention dizziness, extreme, fatigue and even my mental concentration, at times.

Janine has been able to go back to work on a limited basis. She still won't let me stay at home alone. For the past few days, her sister Dee, has been here helping out tremendously.  She really has been a blessing for us in so many ways, freeing us to get even more rest and Janine doesn't mind leaving me  at home alone when Dee can be here. Thanks Dee!

Finally, keep your cards, letters, calls, visits and prayers for us coming. We love being in touch with what's going on, especially when we are gone for extended stays. More importantly, these "gifts" give us comfort, joy and draws us closer to you all.

My Guardian Angels

With constant testing, examination and treatment, I have become very weary of this illness. However, it's so encouraging knowing My Guardian Angels are participating in my care. The spiritual vehicle used by God to assign comforters, defenders, care givers and protectors for us can not be casually dismissed as irrelevant. For I believe that God chooses mortals as guardian angels, too. So it's the spiritual guardian angel and the mortal ones that live in our presence. God breathes life into both and each has a role in my care.

Unseen, spiritual angels can be difficult to comprehend when my faith is shakey. Knowing and believing opens our hearts to God's power and goodness. They connect me to God more than I deserve. We do see through our own eyes the faces of our mortal care giver angels. Some are so familiar that we don't think of them as angels, at all. Rather, they are medical staff, family and friends who treat us with care, encouragment, compassion and prayer. I can not do this struggle without you all. You are worthy of my highest praise and gratitude.

We have been at home for eight days and I'm feeling better. My appetite is coming back, but my strength has not gotten much better. After spending five weeks in Houston hotels and the MDA Hospital, being in our own surroundings has giving me a renewed appreciation for "home". I love our supporters who call, visit and provide us meals and gifts. Their presence gives us warmth and comfort. Getting local church and community updates from our friends and loved ones is a blessing to both of us.

I'm taking several strong antibiotic, antiviral and antifungal medicines. My body is weak as a result. Dizziness and unstable walking is my latest issue. I'm using a cane to help with my balance as I move about. Often, I get winded from doing simple tasks, like showering, shaving, brushing my teeth, etc. When I stand for more than 5 to 10 minutes my body gets weak and my breathing gets labored. I want to believe the strong medicines are causing most of my issues. However, fighting and preventing infection is of utmost importance, so I continue following my medical team's advice, for the most part.

Four days from now we go back to Houston for my second round of chemo treatment. We do not look forward to this trip. If all goes as hoped, we may be back home in about a week. Since the chemo I will be taking is lower in strength than my first round of treatments, I hope my recovery is easier. If not, our stay my be longer than a week.

Finally, my Angel Janine has sacrificed much of her normal life for the past seven months caring for me. Her strength, demanding presence and constant care giving is a beauty to behold. She gives me all my necessary home medical care from getting my medicines organized and administered to changing my PIC line caps and dressings. She has administered chemo shots, as well. None of this comes easy to her, but she does the necessary things to keep me on the healing path. She still finds time to do all the household chores we both used to do. She does it all! My illness defeats me without her love and care. Angelic solider she remains. I Love You.

Home

A quick update that we arrived home safe and sound Saturday late afternoon.  Robert did very well on the trip.  We are both tired but are so happy to be in our own place for a couple of weeks.  

Jail Break!!! Some good news!!!

Dad's bone marrow results showed his blasts were 4%!!! Anything under 5 means he's in "bone marrow remission". His blood counts are still low so not complete remission but it's good enough to GO HOME!!

It's only for two weeks, then back to MDA for round two while we wait on a bone marrow match!!

Another small -- but bigger -- victory!!

Released from the Hospital

Dad was discharged today.  He's doing better but still very tired and weak.  He's been working with physical therapy while in the hospital to regain his strength and she recommended he get a cane to help him walk.  

Mom and Dad are back together at the extended stay hotel near the Hospital. He's on strong antibiotics and anti fungal medications.  One of the medications is super expensive so until they get a price reduction approved, he'll be going to the hospital to receive it via IV every day. 

We will meet with his MDS team, Dr K and staff, on Friday afternoon to get the results of the bone marrow test and hopefully figure out when he'll let Dad go home for a couple of weeks.  So hard to go day to day without a plan but this is the path that we are on while we wait for a Bone Marrow Match. Cancer doesn't really like to make things easy or simple.

We have a long journey ahead of us but we are enjoying the small victories.  Hoping and praying that Dad won't see a hospital bed until its time for a transplant!  Thankful I live/work close enough to visit, bring supplies, give hugs, etc.  

Keep praying!

--Sarah
Save a Life!  Join the Bone Marrow Registry.