October 7th Update

Hi everyone, it's Dawn here. 

Last week Dr. A had me redo my labs (with the big spike) to see what kind of results we'd get with only 2 weeks between tests. The full results were back by Monday. 


There was another big spike. 


Also on Monday (Oct 5th) we got a notification that Dr. A wanted a meeting with us. We figured there'd be a pivot and we were curious if I'd begin the Line 1 drug (as mentioned in our last post) or if he got compassionate permission for me to skip to the Line 2 drug. What happened surprised us too. 


He told us that we would look into and likely go ahead with a Stem Cell Transplant (SCT)! His reasoning is that both my heart and kidneys are stable currently and, although the proteins are increasing, he doesn't see evidence that the Amyloidosis is causing issues yet. This is an optimal time to do an SCT! 


It was quite a pivot and unexpected, and we've had to process it, but we are excited - and apprehensive too. 


Shortly after talking with Dr. A, we heard from Megan, the Stem Cell coordinator and we have a "family meeting" already next week! 


We don't have a timeline yet and nothing is in stone but this is big news! 


When I was first diagnosed in 2021 I was too sick to qualify for a transplant. So this is not only a good opportunity but also an encouragement that my body has healed enough that my caregivers feel I can handle such a procedure! 


It will be hard - we know that, and there are risks, but this treatment also has a good track record of giving an opportunity to be "stable" for a longer period of time. 


It feels a bit like I've been playing "crack the whip" - does that get played still? A line of people holding hands while skating and whipping the last person all around to try to get them to let go! 

It's me pulling the people sometimes, this and every direction, and sometimes it's me on the end, holding on tightly, not releasing my grip! 


For now we'll leave the update at that until we know more.  We'd appreciate prayers as we look into this and ultimately as a decision is made. Please pray for wisdom for us and my medical team as they walk us through this - and prayer for my supports, Andrew especially as he again needs to walk this road with me while simultaneously tending his other responsibilities. 


We are thankful that the Lord has carried us all this time, and we are so, so thankful that stem cell transplant is a possible treatment option.


"Cast your cares on the Lord and he will sustain you;

he will never let the righteous be shaken."

Psalm 55:22


Dawn's summer Zinnias

Comments

Post a Comment

Popular posts from this blog

Sickness and "drama"

The past 24 hours have been a whirlwind of events. This situation as Mom would refer to as her “drama” happened. On Saturday evening, Mom started showing symptoms that she was getting sick.  Last night Mom spiked a high fever and became pretty weak. After consulting with her team at Jurvinski it was decided that she should go to emergency and get checked out. She was a little dehydrated, her blood pressure was pretty low (although that isn’t too unusual for her), and their biggest worry now is that her oxygen drops when she exerts herself. They had her on an IV to help with her dehydration and ran some tests to ensure she didn’t have pneumonia.  After a 9-hour stay at the hospital, she is now home and resting and has to watch to ensure her oxygen doesn't drop more or she will have to return to the hospital. Thankfully, she doesn’t have pneumonia and just needs to rest now. Prayer Requests: Please pray for healing from this illness for Mom and that her oxygen levels will remain...
Read more

Treatment Fifteen

Image
Written by Alyssa. We hope you all had a very Merry Christmas!  Mom enjoyed some time with the whole family on Christmas Day, but it was exhausting for her. She slept for part of the day and then joined us for dinner and opening gifts in the evening, but had to rest again after a couple of hours. Although this made our Christmas a little different this year, we are all very thankful for the time we were able to spend celebrating together. Mom has continued to struggle with the effects of being sick over the past two weeks. She still has moments of feeling weak and sometimes has difficulty catching her breath after moving around a lot. She also has quite a cough that can’t be treated with any cough medicine because of her heart condition. Mom was able to have her Chemotherapy treatment today. They have her scheduled for treatments on Mondays in January, which is a welcome change after having Friday treatments for most of December. Today’s treatment was only a Chemotherapy shot and n...
Read more

Change of Plans

Image
Written by Alyssa. Well, this week has thrown a bit of a wrench in our plans. After Mom’s brief hospital stay on Sunday, Dad stayed home Monday and Tuesday so he would be around to assist her and monitor her fever and oxygen levels. Thankfully her fever has broken since then, but she still has to be careful not to overexert herself because this can cause her oxygen levels to drop too low. If her oxygen drops too much then she will have to go back to the hospital for supplemental oxygen.  Since Mom isn’t fully recovered yet, Dr. A has decided that it would be best for her to skip her treatment this week. This means she will have an additional week off from treatments than originally planned, with her next treatment on Monday, December 29th. Thank you for all your continued prayers. While this week was slightly scary, it is such a comfort to know that God is with us throughout it all. Prayer Requests: For healing and quick recovery from sickness for Mom and that her oxygen levels won...
Read more