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May
21
2021

May 20, 2021

Betsy has been out of the hospital for just over a month now, and is making great progress. Her treatment now requires that she go in every two weeks for 4 days of in-patient chemotherapy. Through it all she is staying incredibly positive and strong- like the Betsy we all know and love so much!

She just got out out of the hospital from her 3rd round today, and said she was treated very well in the hospital.  Although it is going well, the chemotherapy is wearing her out quite a bit, and she is feeling the physical effects of exhaustion & hair loss. We are focusing on making sure she gets plenty of food, water and rest.

But all of the struggle aside, we are all feeling very encouraged by her progress in just one month. She seems more optimistic than she has yet- she’s laughing more, and she has her wit and sense of humor back- it is truly wonderful to see.  A huge part of her progress is the strength in her left arm and hand. She is now able to lift her arm over her head, and her grip strength is steadily improving. She demonstrated this by picking up a glass today! This is something she couldn't even attempt a week ago. She also was particularly excited that she pulled herself up to standing using the edge of the kitchen sink. She said her balance and core strength are improving a great deal.

As of now, we are taking it one day at a time, but the doctors are very optimistic, and so are we.

She really appreciates all of the phone calls, messages, and home visits, as well as the extremely generous food train organized by some loving friends. It has been wonderful and helped to keep us going day by day by allowing us to focus on Betsy's recovery and care.

We all want to say thank you for your incredible love and support- Betsy feels it, we all feel it, and it is making such a difference.

 

So much love and gratitude,

 

Maria & the rest of the clan.

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May
10
2021

May 10, 2021

Betsy returned last Thursday from her four day inpatient chemotherapy session at St. Cloud Hospital.  The methotrexate residual levels need to be low enough to not be toxic and she needs to be monitored closely, thus the need to be hospitalized. This will be her future for the next year and a half. 

She generally has a positive outlook within her limited abilities but has not seen a great deal of return of function yet. The biggest change is that her voice has regained a more normal intonation. She can move her left arm much better but the fine motor skills of her fingers are still too limited to be useful. She has started reading her email more but it’s too difficult to reply much to email. She also has not yet returned to reading books. 

Betsy is very grateful for the strong outpouring of love and kindness that we have received from so many of you.  We look forward to being able to share better news as she improves. She would really like to simply walk around the backyard garden again as the return of warm weather unfurls the greenery and flowers in our backyard. 

April
20
2021

April 19, 2021

Eureka!  Betsy came home from the hospital today after a stay of one day short of a month.  This was a day earlier than expected because her methotrexate level came down in fairly quickly. She will go back in about 10 days for the next round of chemo.  As I said earlier, this will be a year and a half process.

She is very happy to be home and able to see family again. All three of the kids (Drew, María and Joe) came home on Saturday to welcome her. She is quite immobile and it will be a bit of a struggle until the changes are made to the master bedroom and bathroom. 

Betsy said repeatedly that she had great doctors, nurses, therapists and other staff at CentraCare. And we have truly great friends who have helped or tried to help us during this time. 

April
17
2021

April 17, 2021

Mayo pathology identified Betsy’s cancer as B cell lymphoma and they began chemotherapy yesterday (Friday) - no pussyfooting around now that CentraCare knows what the root cause is.   It looks like she will be hospitalized for four days chemo treatments twice a month for the next four months then one time per month for more than a year. Between treatments they will release her to come home, so it looks like she’ll be home next week for the first time in a month  

There are four tumors in her brain and they appear to be primary rather than metastasis from another organ according to the CAT scan.  According to the oncologists this is not very common in the case of lymphoma.  We are told that there is greater than 70% odds of good results with this type of cancer and this course of treatment.  According to the doctors the loss of use of her left side is more of a direct effect of the tumors rather than a flare-up of her MS.  We are hopeful that she’ll regain use of her left side as the tumors shrink.  (If you’re a praying person that will give you something to focus on!)

We will be remodeling our master bathroom and bedroom to accommodate a wheelchair in the event that this is our longer term reality and this is going to create a bit of a mess at home.  We will need a wheelchair-accessible shower, etc. We are hoping for her to regain her ability to walk and use her left hand/arm but we have to be prepared for the worst.

We will have to set ourselves up in a guest bedroom until the remodeling is finished. This summer will be a ton of work boxing up things and figuring out how to get Betsy equipped and moved about the house and properly attended to... it’s not the summer we had hoped for but it’s the hand we were dealt. 

The contractors are wonderful in giving us priority in their schedules to make this all happen.  And we continue to be amazed at how generous and caring our friends are. Betsy really feels the love and wishes that she could be more attentive to responding to texts and emails, but her disability makes it impossible. 

April
14
2021

April 14, 2021

Betsy had a biopsy performed by a neurosurgeon this morning and they were able to identify it as a form of lymphoma. We should know in about five days specifically which kind after the Mayo Clinic pathologists analyze it. After that we will get a plan established with an oncologist. 


Of course it’s bad news but finally we know what has been setting off her immune system response. We are so very moved by all of the wonderful responses from our friends and family. Betsy has not been able to keep up with her email due to her newly disabled left hand so please know that she feels the love from you all. 

April
10
2021

April 10, 2021

Betsy’s neurologist told us today that the plasmapheresis doesn’t seem to be making enough progress so they’re going to discontinue those treatments. They’re  still suspicious that it could be something other than just the MS. So, they will be taking a biopsy of the lesions on her brain and have the specialists at the Mayo Clinic analyze the tissue to see if there is an infection  or possibly cancer. it will take about a week to get the biopsy and results from Mayo. 

So, the waiting continues. 

April
8
2021

April 8, 2021

Betsy has had multiple sclerosis for about 27 years. After the first year of her diagnosis her MS settled down to be a fairly steady relapsing remitting type of MS with few exacerbation episodes. Her condition has very slowly declined over the years and it has affected her ability to walk due to weakness in her left leg and some weakness in her left hand but she managed to walk pretty well with a cane or a friend’s arm. In late February of this year her condition suddenly and dramatically got worse, leaving her unable to walk and take care of herself and she was hospitalized at Saint Cloud hospital on Tuesday, March 23.

She spent a week on the neurology floor and received IV steroids and then was transferred to the rehabilitation unit the following Tuesday where she received occupational and physical therapy from excellent staff. She had a strong will to work at the OT and PT exercises and initially recovered a very small amount of strength in her left hand but during the six days in rehab she lost all of the progress that she had made due to the persistent MS progression. 

She was transferred back into the hospital and has had a weak appetite and has lost some weight. Since her return she has been unable to do any PT and OT. The neurologist began a series of five plasmapheresis treatments that will remove the proteins/antibodies that are attacking the myelin (which coat and protect the nerves). The last of these treatments will be on Tuesday (April 13) and they are only a stop-gap treatment to help stabilize her. We still don’t know the longer term scenario for her. 

Because of Betsy’s uncharacteristically sudden decline the neurologists are likely going to repeat tests next week that previously were negative for other possible infections that could be causing her immune system flare up. 

I have been visiting her everyday, sometimes sharing her hospital meal. (Side note:  The St. Cloud Hospital makes very good beef dishes!) She has limited ability to text due to the lack of use of her left hand. She doesn’t have the energy to take phone calls either so please know that she very much appreciates all of the well-wishes. For now there’s not much that folks can do for her. Once she’s able to return home I’m sure that she’ll be in a better space to receive visitors and maybe you can take her for a spin in a wheelchair. 

Thank you to everyone who has reached out.