Sarah-Marie Henson Trusting: 1 Day at a Time

First post: Dec 7, 2018 Latest post: May 17, 2024
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of encouragement, but most especially, we value your prayers lifted to the Lord Jesus, on our behalf. Thank you for every expression of love and concern!

This chapter in Sarah-Marie's story began in February of 2018. After three hospitalizations for asthma that fall and winter, she suddenly developed severe pain in her knees, puzzling both her doctors and us. After multiple tests, she finally had a diagnosis - Avascular Necrosis, often caused by high steroid use. Sarah has had asthma since infancy, but rather than outgrowing it (as was predicted), it has worsened through the years. The standard treatments for severe asthma are steroids - both Prednisone and Solu-Medrol. Sarah has had much of both.  

We quickly discovered that even physicians know very little about this rare disease. After a failed surgery and the top orthopedic surgeon at UAB Hospital saying he could not help, we made an appointment with a trusted orthopedic surgeon at St. Vincent's, one we've used multiple times in our family, asking, "If it was your daughter, what would you do?" His answer?  "Get her to Mayo." 

Believing this to be the answer to our desperate prayer, asking God for guidance in how we should proceed, we applied for an evaluation at Mayo Clinic in Rochester, MN. Before that process was completed, Sarah suffered another severe asthma attack and we found ourselves back in the hospital. This time, the attack was life-threatening. High doses of Solu-Medrol were unavoidable, and even so, she was placed on a ventilator for three days. In the midst of it all, she missed her baby brother's wedding - a heartbreak for her.  The Lord graciously brought her off the ventilator and her asthma was controlled enough to return home - but only on continued high doses of steroid. All involved hated the steroid use, knowing it causes AVN, but there was absolutely no other choice. Rather than living with her and Nozomi at their house, as we'd been doing since this all started, this time we brought her home to our house.  She once again resumed the Mayo screening process, and was accepted, being scheduled for a 7-10 day evaluation. She was evaluated by both the Pulmonary and Orthopedics Departments, after which a team of doctors, including her Pulmonologist here in Birmingham, discussed together the best treatment options.

Mayo’s Pulmonary doctors said she was at the peak of care possible; they did not have anything to add. At that time, we were aiming for a bone marrow transplant into the knees.  That required 10 mg of oral prednisone or less per day for a minimum of five weeks.  We have been aiming for that requirement over these past years, but every time we got close to that goal, she would have another serious attack and the whole cycle would start all over again.

In 2019, Sarah had approximately 15 ICU stays, due to asthma.  Each required high dose solumedrol use that significantly impacted her AVN.  With no other options available, at the urging of Sarah‘s pulmonologist, we moved to Gulf Breeze, Florida in February 2020. It was to be a trial move, for one year, to see if the salt air would make a difference. Towards the end of the summer, Dr B. advised us to make the move a permanent one. So we began the long process of emptying our home of the last 24 years, and getting  it on the market. We hoped to have that accomplished by the first of 2021, at which time, we would begin to search for a home, somewhere along the Alabama coast. Per Dr. B’s counsel, we looked for a home within blocks of the ocean, not miles. It was a seemingly impossible task.

We ended up leasing a home in Gulf Breeze, Florida, where Jimmie was able to find employment at a Pensacola hospital, with the plan to stay there one year to see if it made a difference.  Since moving to Florida, her care was transferred from Mayo Rochester to Mayo Jacksonville.  The new surgeon told us the delay in getting the bone marrow transplant was now too long.  It would no longer be helpful.  Instead, knee replacements, which they’d been trying to delay due to her age, would now be our only option.  

However, in 2020, it was discovered that she has 5+ vertebrae fractures, including some that may affect the spinal column.  This had to be stabilized before any knee surgery could be performed.  Mayo Jacksonville would handle the knee replacements once the spine was stabilized.  

Additionally, in 2020, we learned that Sarah-Marie has posterior subcapsular cataracts (starts as a small, opaque area that usually forms near the back of the lens, right in the path of light), also caused by the unavoidable high-dose steroid use.  This type of cataract often interferes with your reading vision, reduces your vision in bright light, and causes glare or halos around lights at night. This, along with the ptosis of both eyes, needs to be corrected.  In the meantime, Sarah’s vision continues to decline. 

Sarah-Marie’s Hematology team is also working to improve her immune system with monthly IVIG infusions.  She has responded slower than was hoped for, but we continue to work with Dr J. on this issue.  

As of December 2020,  these are the known surgeries Sarah needs in 2021:

—> Spinal Stabilization- 1 to 3 surgeries, depending on the final number of fractures determined that need repair 
—> Bilateral Knee Replacements
—> Eye Ptosis and Cataract Surgery in both eyes 
—> Potential Hip Replacement (right)

In the upcoming months, we are unsure of the amount of medical finances Sarah-Marie will need.  For 2021, we will be partnering with Help Hope Live.   We are excited about this change, which will allow for tax-deductible gifts in addition to giving help with fundraising and account management.  Stay tuned for more information as we make this transition.  

Sarah is now completely confined to a wheelchair and daily struggles with debilitating pain. While life in a wheelchair has been a hard adjustment, it's the uncontrollable pain that has seemingly brought life to a screeching halt. We covet your prayers as we continue to seek God’s grace, mercy, and wisdom for the next step - one day at a time.

Discovering that the salt air was beneficial for Sarah, we decided to make a permanent move, choosing to look for a home back in Alabama, rather than Florida.

We are in your debt for the many significant ways you faithfully shower on us your love and support, most especially for holding up our arms in prayer when we no longer can.  May the Lord bless each of you - in just the ways He knows you most need!

_______________________

May 2022 Update:
The details of our continued journey can be found by reading through the journal. In a nutshell, we are now living in Magnolia Springs, Alabama, where the Lord has provided a house well-suited to create a “tiny house“ for Sarah and Zomi in a three–bay garage space. We are nearing the end of that project now and hope to see it completed at least by the end of this summer. The other requirement for choosing the house was that it be within the high salt concentrations in the air. A salinity map gave us the areas to look in, and when this house showed up, we grabbed it. 

The spinal stabilization was finally completed. The replacement surgeries have not been done yet, and she may need further surgery in her eyes (not sure yet).

And on a very positive note, she no longer uses the wheelchair inside the house, except for crisis times and when she leaves the house. We are so grateful for that significant blessing!

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