June Update

Last week we enjoyed a nice (but cold!) week camping, which was a relaxing break from the flow of work and appointments. 

This week has us back to reality, with labs on Monday morning and an appointment with Dr. A in the afternoon. Mom felt pretty good after she and Dad talked to the doctor and were able to discuss the stem cell collection process plans. Dr. A says he is happy with Mom’s bloodwork results that had come in at the time of the appointment. He also said that although the Lambda cells are increasing, they are still within “normal range” and aren’t increasing exponentially. His plan is to collect the stem cells from Mom while she’s pretty healthy and cryo-freeze them for the future if a transplant is needed. 

He reassured Mom that this procedure is fairly straightforward and not painful. Mom is nervous about the catheter that will be put into her neck for the retrieval procedure. The doctor assured her that if she needs it, he can prescribe meds to lessen her anxiety for the procedure. Part of her anxiety is PTSD from her surgery in 2022, when her artery was accidentally severed and needed emergency repair. The catheter insertion will be done at the same clinic.

Mom’s stem cell retrieval is scheduled for July 16th and 17th, with the preparations for that beginning in the days prior with mom going for daily shots that will make her bone marrow produce extra stem cells.

Fun fact: Amyloidosis patients can donate their own stem cells (called "analogous") as their stem cells are healthy from the marrow and go wonky after that. 

Leukemia patients however need donor stem cells as their stem cells are wonky right from the bone marrow. 

Tuesday meant it was time for Mom’s June Immunotherapy appointment. The clinic was running behind and both mom and dad forgot to bring their books. Whoops! But they were able to keep themselves entertained while they waited. In the end Mom got her treatment and then they headed home. 

Next week, Mom has two appointments scheduled. The first on Monday is a meeting with Dr. A and the stem cell coordinator. This will likely give us more information about the stem cell retrieval process. Then Friday, there is a family meeting to go over the particulars of the retrieval process with us kids. 

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Some people have asked us when this new treatment starts and how it works. Well, I thought I would try and explain. One important thing to note us that this treatment has two parts - part one is the Retrieval process, and the second part is the Transplant.

First, Mom will be given shots which she will have to go to a clinic daily to recieve for five days before the retrieval process starts. These shots will make her body produce extra stem cells.

On the 16th, Mom will be admitted to the hospital. They will first put the catheter in her neck for the retrieval process, and after that they will begin cycling her blood out of her body and through a machine to remove the stem cells and then return her blood to her. They hope to retrieve 2.5 million stem cells. At the end of each day they will have a lab assess how many stem cells have been collected and if they haven’t retrieved the 2.5 million, then they will try the next day again to collect more until they have reached that amount. They expect this to take 2 days.

After the stem cells have been collected, they will be cryofrozen until they are needed for a stem cell transplant treatment. This process is sort of like preparing for a “rainy day” in a way. Because Mom’s blood levels are currently in a stable range, this is the best time to retrieve the stem cells. 

Whenever Mom’s blood levels go above the stable range then Dr. A will likely call for the stem cell transplant to happen. This will involve Mom being admitted to the hospital again and being given a high dose of chemo, which will destroy all her existing stem cells and then later being given her own stem cells that were collected and cryofrozen. This chemo will cause her to lose all of her hair. There is currently no date for the transplant to happen. 

The stem cell transplant acts as almost a “factory reset” to Mom’s system. After the transplant Mom will have no immune system, and so we will have to be extra careful to avoid illness. She will have to go to a day clinic daily for two weeks afterwards so they can check that she is doing okay. 

 

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Thank you for your constant prayers and words of encouragement. 

Prayer Requests:

1.  Mom has been working through some anxiety related to the stem cell retrieval and eventual transplant procedure. Please pray that she can be filled with peace as she prepares for this process.

“Because you are my help I will cling to you. Your right hand upholds me.” Psalm 63:7-8

Your right hand upholds me on a beaded bracelet.

Written by Alyssa and Dawn.