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.