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.

Hospital Update

Robert is still in the hospital.  The doctors are pleased with how he is doing but want him to be in the hospital at least through Tuesday and then to hang around Houston for another week!  We have not yet heard the results of the bronchoscopy he had on Wednesday morning trying to determine what type pneumonia he has.  There has been no fever at all since his admittance to the hospital.  He still has no appetite and it is difficult to get him to eat anything but he does try at breakfast and has a Boost milkshake at lunch.    

Wednesday he started physical therapy and Thursday occupational therapy.  A dietician has been in also trying to encourage him to eat.  Robert has been sitting up in the chair for several hours a day and has walked his room (it is big) and the halls with the therapists.   

Robert will have another bone marrow aspiration and biopsy Tuesday morning.  He is scheduled to see his MDS doctor on Friday afternoon.

I can’t say enough good things about the doctors, nurses and staff at MD Anderson.  Everyone is so pleasant and upbeat, always looking for a way to help.  The nurses have been awesome.  

We ask that you continue to pray for a better appetite and strength so that we can head back to Mississippi soon.  

Hospital

Robert was admitted to the hospital this morning.  We came to the Emergency Center at MD Anderson about 3:30am because his fever reached the level the leukemia patient instructions say to come in.  He has had recurring low grade fevers in the late afternoons into the evenings for a little over a week despite being on antibiotics.   He will be here until at least Thursday; has to be fever free for 48 hours before he can leave. During the day, his temp is normal; usually starts between 4-6 until the wee hours of the morning.  He is on pretty powerful antibiotics.  Chest x-ray showed possibility of pneumonia so they have taken him for a Cat-Scan of his chest to get a clearer picture. Will update the blog as I know more.

Friday's Doctor Visit

Our visit with Robert’s doctor on Friday afternoon did not give us the desired results as far as our going home soon. Dr. K now wants us close by for two more weeks mainly because Robert has not recovered as quickly as he had hoped. He has been running a low grade temperature in the evenings which is of concern to the doctor.  He has remained too weak to travel or to do hardly any physical activity. His weight is down about 12 lbs since his hospital stay and his blood counts remain low. We had to go from the doctor’s visit immediately to the Ambulatory Treatment Center (ATC) at MDA for several infusions:  platelets, red blood cells, magnesium and fluids.  He also started a seven day antibiotic IV regiment.  We left the hospital at 10:45pm last night.  A really long day since we got there around 8:30 that morning.  The platelet count had dropped to its lowest level so the infusion was a big boost. The extra red cells have him feeling much better, energy wise today.  Robert has had trouble keeping himself hydrated and his appetite continues to be poor (although he has done better today).  The doctor told him to eat many small meals though out the day but nothing tastes good to him.  Also, his tolerance to strong oral antibiotics is not good so the doctors have changed these several times adding some, dropping others such that it makes it hard to keep track of what he is to take each day.  I have to have charts for everything.  Plus we are beginning to experience the “donut hole” of his Medicare drug plan.  I will be meeting with a pharmacist insurance specialist next week to discuss this.  

We  both want very much to get back home for a week or so but not if in constant fear of taking a turn for the worse without being close to Robert’s care team. For now we are still in a nearby hotel and Robert will be going to the ATC on a daily basis for some antibiotic infusions for seven days.  Of course, the every other day lab tests continue. 

We thank you for your prayers.  Please keep them coming.

Houston-Week Three

After meeting with the PA following Robert’s blood work Wednesday, we learned we will probably be in the Houston Medical Center district another week.  Robert’s counts have not started coming up enough for the team to feel comfortable letting us drive home.  Plus he is so weak that I would not feel comfortable driving that far with just the two of us.  We have started looking for an apartment for a short term lease since we will be coming and going so much in the future.

Robert is very weak.  We believe part of the problem is due to an antibiotic prescribed for him that he has never done well on.  His PA was surprised when she saw the dosage the hospital attending had prescribed when he left the hospital.  That medicine has been changed so hopefully we will begin to see a little improvement in his strength.  Today I rented a wheelchair so that I can get Robert from the hotel room to the front door of the hotel as we are really far from the elevator that leads to the front.  We take the hotel shuttle to the hospital so that we don’t have to worry about parking.  At the shuttle drop-off location, I pick up another wheelchair to get him around the hospital.  We meet with his MDS doctor Friday afternoon.

Because of the additional week in Houston and us going crazy in a small hotel room, we moved yet again to an extended stay hotel within walking distance to the hospital.  Of course, we are not walking but it is nice to know the hospital is so close.  We feel like we can breathe again having so much space.

Robert was able to sit up more today than he has the last several days.  He has eaten a little but not enough although I know this is all part of the side effects of his treatments.

Thank you all for your continued prayers.

Saturday Events

The end of week two in Houston brought a trip to the MDA Emergency Room for Robert.  He finished all chemo treatments on Wednesday afternoon.  He had been feeling okay, eating little portions and taking slow walks around the hotel property to regain some strength.  Sarah and her family came down Saturday morning so we could meet them at Hermann Park for a visit in an outdoor setting.  It was a cooler Houston morning and the perfect morning to be outside.  While standing in line to ride the train, Robert started feeling faint after feeling fine all morning long.  I was able to get him to a chair away from the grandchildren.  He began to feel even worse.  I had forgotten to bring his gator aid so Sarah was looking for him something to drink.   While she was gone, the manager of the closed park cafe saw Robert’s distress and asked what he could do to help.   I had him call the paramedics because I knew there was no way we could get him to the car.  The cafe manager got a towel and bag of ice to use on Robert and then he went to wait for the paramedics to get there so he could show them where we were.  He was a life saver.  He was late opening the cafe because of his help to us.  A truly wonderful young man.   Sarah was getting our car so she could follow us to the hospital which was less than five minutes away.  Ryan made sure the grandchildren got their train ride without being aware of what was going on with their G-Pa.  When the paramedics took Robert’s blood pressure, it was extremely low.  After getting to the ER, he was assigned a room and within an hour his blood pressure was almost normal again without any medicines or fluids.  I believe just being able to lay down helped him a lot.  But because of his medical condition, the ER doctor ran all sorts of tests before starting him on fluids.  His white blood cell count is almost nonexistent, his red blood cell count is still low and his platelets had dropped again since Friday’s lab work so Robert got a bag of platelets before we left the ER.  By early afternoon, Robert was feeling fine, hungry and ready to come back to the hotel.  Of course, you know you never get out of the ER in a timely fashion.  After eight hours of being in the freezing ER room, he was finally released.  Robert was able to walk from the car to the hotel room without any problem.  He was hungry; wanted a burger so I went to Five Guys and got him a cheeseburger.  I was so proud that he ate almost the entire burger.  We both slept fairly well last night.  Our Sunday plans are to do very little.  This episode is very similar to the one Robert had back in February after his first cycle of chemo in Jackson.  

Please continue to pray for strength for Robert and for tolerance of all the medicines he now has to take.   

Hospital Release

After spending five difficult nights and days in the hospital, Robert was released Monday afternoon.  He finished the five days of IV chemo but still had 5 more chemo treatments by injection.  Before we left the hospital, his wonderful nurses gave me the opportunity to give Robert the Monday afternoon injection.  Needless to say, I was a nervous wreck but did a good job according to Robert:)  Today I have given the 5am and 5pm injections without hurting him.  Only two more tomorrow and all the chemo will be over for this trip. I have to flush his PICC lines before the night is over.  This nursing duty is totally out of my confidence levels.   Robert still has to go for lab work three days a week and meet with his doctor on August 8.  The chemos have really dropped his counts even lower so he is wearing a mask when we are out in public and we are both washing our hands all the time.  He is feeling somewhat better; has been able to eat some food and is walking around to get his strength back up.

After 8 days at the Rotary House hotel (owned by MD Anderson and connected to the hospital by a skywalk), we had to move to a different hotel as the Rotary House was booked.  It is a wonderful place to stay; I have learned to book as soon as you know you are coming back and book for an extra week just to be sure you will have a room.  It is a very popular place due to the convenience and everyone there has a family member/friend in the same situation you are so there is a lot of sharing of stories and helpful tips.   All of the hotels in the Medical Center district offer medical discounts and shuttle service to MD Anderson.

Thank you all for your continued prayers.  As I have said before, we have a long road ahead of us.  

Update from Janine 7-26-2014

I haven't felt like writing or doing much of anything lately so Janine is updating here for a while:

Robert has been in hospital at MD Anderson since Wednesday afternoon.  He is now a participant in a clinical research study.  He is receiving two types of chemo; one by IV once a day for 5 days and another by injection twice a day for 7 days.  He is losing his appetite already, has experienced the nausea feeling, and generally does not feel good.  His blood counts continue to drop.  All of this is expected side effects of the treatments.  The first 24 hours in the hospital were pretty hectic and he didn’t get much sleep.  Friday was calmer and he slept on and off most of the day.  Saturday morning was a bit rough but he is feeling a tad bit better this afternoon. He  even felt like taking a shower!  I had to go to a training class on “Central Venous Catheter Dressing Change” this morning.  Each caregiver is required to go to the class twice and then demonstrate to the Infusion Therapy team that I can do the flush and dressing change.  This will be interesting!  Robert does have an infection in his big toe from an ingrown toenail that has been treated by the MD Anderson podiatrist.  It is looking a little better but with his low low white blood cell count, it is of concern.  We were told he would be in the hospital from 7-10 days then would be out-patient for another week.

On Tuesday, Robert, Sarah and I met with the Stem Cell Transplantation team.  We were all very impressed.  We are proceeding with the plan for Robert to have a bone marrow transplant once a suitable donor match has been found.  His siblings will be the first to be typed for a match; if neither of them are a match, the National Bone Marrow registry will be explored for a match.  

There will be a lot more bad days before there are good days.  MD Anderson Hospital is a wonderful place.  Everyone has been so nice.  Have a feeling we are going to get to know a lot of the folks really well.  

Review, Summary and New Chapter

Review and Summary:
About six months ago I was diagnosed with  myelodysplastic syndromes (MDS) which is a cancer of the blood. My three major blood cells: White, Red and Platelets are all low causing symptoms of extreme fatigue, susceptibility to infections and being prone to easy bruising and bleeding. I have been under the care of an oncologist who put me on a regiment of chemotherapy injections administered for 7 consecutive days, once a month for 4 months. Very little, if any improvement was found after these treatments.

New Chapter:
Last week we traveled to MD Anderson Cancer Center in Houston, TX (MDA) for further evaluation and testing. My initial tests there (blood and bone marrow and examinations) confirmed my MDS diagnosis and showed my conditions is still not good, even a bit worse than when I was first diagnosed six months ago. My new doctor also reaffirmed the initial treatment was a correct first step and recommended a new course of action in the upcoming weeks. This may involve a different chemotherapy regiment and possibly a stem cell (bone marrow) transplant in the not too distant future. I am also being evaluated for one of the MDA clinical trials which will begin next week.

While this all seems rather scary, we remain optimistic for a positive outcome and look forward to the "miracles" MDA with God's help or is that the other way around? Anyway, the next few weeks will be adventurous what with all the bigness at MDA Houston and their medical expertise. We begin with about 10 days of travel, hospitalization and rest & recovery. Keep us in your prayers as we embark on this step in our journey.

MD Anderson On the Horizon

After my June 23, 2014 appointment with Dr. Young we discussed the possibility of a referral to MD Anderson Cancer Center in Houston for an evaluation and second opinion from there MDS experts. She felt this was a good time for our going there since we had finished my last treatments over a month ago, things were not improving and my system was clear of the chemo treatments.  Apparently MDA likes to evaluate new patients after other treatments have finished. My first of two days of appointments begins on Tuesday, July 8th. If all goes well my last appointment will be on Wednesday after I have completed a variety of tests and lab work. Then I get to see my doctor for consultation, examination and evaluation on Wednesday afternoon.

We plan to travel to Houston on the Sunday before my appointments on Tuesday so we can get in a visit with Sarah, Ryan, Cason and Claire at their home. Since we will be driving long distances we will likely need to spend a few nights along the way going and coming.  We will also stay in a hotel for two nights near MDA on Monday and Tuesday. Long travel is not something I do well with these days so this is going to be an adventure.

Transitions

As June 2014 draws to a close we transition to changes in my health care plan.  May 2014 concluded with the completion of my fourth and final round of chemo (Vidaza) injections. Once a week I had my usual blood test on Mondays. The results were not as good as we had expected, but at least my major counts had not gotten significantly worse.  For the most part things stayed about the same, with slight fluctuation from week to week. My physical strength and ability continued to be weak and mentally my attitude waned as I struggled with what the future held for us.

Faith is a funny thing when faced with uncertainly. If I were truly faithful my attitude would always be solid, positive and upbeat. I have to keep reminding myself that God is in control. He directs the work of the doctors, nurses, lab technicians and all others in our health care network. So when things don't seem to go as well as I had hoped it's easy to get discouraged.