Week 14 Plateau

1 Mar

I look back at this week’s events and I realize that we had a very full week.  No wonder we feel so tired.  Though I am unsure if calling this week a plateau period is appropriate.  Susie’s blood counts are basically the same a week from Friday.  Her platelets a week ago were 63k and WBC were at the bottom of normal, yesterday her platelets were 62k and WBC were also at the bottom of normal, but a lot has happened in the last week.  So while her blood counts are largely unchanged, life has not remained still.

GoertzCabinWe started the week preparing for our trip to MD Anderson.  We met up with some of Susie’s family at her mom’s home in Onion Creek.  It just so happened to be the day that the Austin American Statesman ran an article on her family, called ‘The Callahan Clan from Country to City‘.  It was a great article and everyone was a buzz.  There were multiple copies of the paper for people to share.  I tried reading it out loud to Susie, but there was just too much commotion.  So, I took pictures of the paper and read them to her later in the evening.  I think we used the article to kind of hide/ distract us from the anxiety that we were feeling about heading to Houston.  The story could not have been timed any better.

Monday came around too quickly.  We had all of our bags packed the night before.  So we just had to take showers, get dressed and make our way.  Of course, life would throw us a monkey wrench that morning.  When Susie finished taking her shower, she went pale and had a partial seizure.  She was very happy before the seizure, even singing in the shower.  The seizure was very different than her grande mal.  Her eyes got fixated and her jaw slacked.  She slumped into my arms, but no shaking of limbs or an initial moan.  It was shorter, lasting between 15-30 seconds.  She was a confused afterwards, but could respond with logical and coherent words.  While Susie rested and I talked with doctors, we were obviously delayed in our departure for MD Anderson.

Nevertheless, we arrived at MD Anderson in advance of Susie’s scheduled blood test and MRI.  We even got to hop the queue, so the doctors could look at her scans that day.  Susie on Tuesday, spent about 2.5 hours undergoing cognitive testing.  The testing was to gauge the changes in her thinking from before treatment to after treatment.  Susie then met with Dr. Yung and his staff.  We recapped Susie’s recent treatments and events over the last few months, specifically focusing on the last three to six weeks.  Susie also did a physical exam with Evalu, Dr. Yung’s APN.  Her balance is still off, strength is good and memory is challenged.  We felt the news from Dr. Yung was positive, specifically the part about the white area identified in an earlier appointment not looking like a tumor or brain necrosis.  The recent seizure is likely related to scarring, so her anti-seizure medicine is being increased.  Once her blood is recovered, we may consider accutane in maintenance mode.  For now our number one priority is to get Susie’s blood healthy. We are hoping she continues improve physically and mentally as she is taken off many of her treatment medicines.

We returned to Austin, as quickly as we could.  Susie continued her treatments like last week, sans Monday.  So, she had IV steroids on Wednesday and Friday and IV immunoglobulin on Friday.  Leora joined Susie for most of the afternoon on Wednesday.  Pearl was part of her school’s talent show that night.  Susie wanted to go, but was unsure most of the afternoon if she would be okay.  She was quite tired and slept a lot that day.  About a half hour before the show, Susie made the decision to go.  hobbit_ocarinaWe were so very tickled and proud to see our sweet daughter on stage playing her ocarina.  There were only two acts from her grade that performed.  Pearl even cut a few comical comments, making everyone laugh as she fumbled with her microphone and sheet music stand.  Pearl was absolutely brilliant.  We finished off the evening with dinner at Magnolia.  Considering three weeks ago Susie started showing motor decline there, it was great to see her able to eat without assistance.

Thursday was a quiet morning with no treatments.  Susan Steffes came over around lunch time.  She and Susie had a nice walk down the street to Josephine House.  Even with it being a bit chilly, they sat outside (next to a heater) and enjoyed the fresh air.  It sounded like the food was delicious, though the service was a bit discombobulated.  Nevertheless, they had a great time together and ended the visit looking through Susie’s vintage hat collection.  We had assistance from Yvonne, our sister-in-law via Charley, on Friday.  She joined Susie at Texas Oncology for the immunoglobulin treatment, had lunch with us and hung out with Susie and Pearl all afternoon.  Both of their visits were really nice and loving.

We ended our week with Thai food.  Susie was pleased she could eat (and enjoy) her coconut milk and lemon grass soup again.  We rented the movie ‘About Time‘, as Susie was able to watch ‘Guilt Trip‘ earlier in the week.  It was fun to watch movies again.  I wonder if we watch ‘About Time’ if it is better the second day for Susie, kind of like lasagna.  Maybe we’ll give that a try on Saturday or Sunday.  Nevertheless, we’ve passed February and are now on to March.

 

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