1, 2, 3..4, and 5!
Written by Dawn.
So there hasn't been much on this blog but life has still had its busy times here! We thought we'd do one post for the four events/occasions lol.
We had a very busy Thursday (Sep 17). Somehow I was double-booked to have my labs drawn at the same time as I had a follow-up appointment with my cardiologist! Not sure how that can happen with a computer program making the appointments, but it can! Long story short, we asked for the cardiologist appointment to be moved if possible but if it couldn't be, we'd work with what we have! Turned out we had to do the latter 
. (2). So I went earlier for my labs, hoping I could be done quickly. And that worked!
Labs at 8, (3) Cardiologist at 8:45 and (4) Dr. A at 9:45! That ended up being quite busy, but sometimes it's nice to get a lot done at once, right?! 
Labs are still coming back
My cardiologist said that according to the Echocardiogram that I had on the previous (1) Sunday, my heart condition is "stable". And that's good news that we are very thankful for! For me, one number made me VERY happy - previously, my heart function was at 49.8% ("normal" is 50-70%). This time my number was 50.6%, so I'm back in "normal". And that's what I had prayed for! While this is statistically insignificant, I appreciate that 1 point SO much and it really encouraged me to see yet another example of the goodness of God!
There were a few comments on my Echo report that didn't sound good like "could not be estimated...lack of adequate TR Doppler signals" and "decreases more than 50% during inspiration" --- sounded ominous but we learned that these are NORMAL!! 
After that appointment, it was time to see Dr. A for my follow-up appointment. There wasn't much to talk about there - we continue to watch and wait. Dr A feels that my immunotherapy infusions ARE doing a job but there will likely be a change in treatment coming up, especially if we start seeing big spikes with my Lambda cells.
One neat thing that happened on my echocardiogram day, which this time was on a Sunday. Specifically at the same time as our church service! I hate missing church, but it was a neat experience to participate in the livestream in the hospital waiting room! The hospital was quiet and we kept the volume low, but what a neat opportunity! Eventually, I was called in for my test and Andrew continued with our church service! The service was almost over when I was finished with the Echo, and I was able to re-listen later. Although I hate missing church, we are thankful for technology!
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(5) Infusion Day - Sep 22.
Written by Alyssa.
Well, we intended to add to this update today after Mom’s infusion because “there isn’t really much to say on infusion days”. Well that has changed a bit.
On Friday, the last of Mom’s lab results came in, which showed a significant spike in her Lambda cells (the problem ones). This spike prompted Dr. A to book another appointment to discuss future plans with Mom after her infusion on Tuesday.
Today, Dad took Mom to her infusion at 1, then they came home and had the video appointment with Dr. A at 3:30. Pretty much, the Dara infusions (Immunotherapy) aren’t working as well as the doctor hoped and aren’t keeping Mom’s numbers down. So Mom’s treatment plan is going to change. The doctor wants to have her do another round of labs next week and see how fast they are trending, and from there make a firm decision on how to continue treating her.
We are incredibly grateful to know that there are still treatment options available. Dr. A is trying to get Mom approved to use a 2nd line of treatment drug (rather than having to use the 1st line drug) because it is tolerated better, but the protocol is to use the 1st line one first. The goal of these drugs is the same as chemotherapy: to bring the Lambda cells back to the normal range. The reason the Lambda cells need to be brought back under control is that the higher they go, the more damage they cause to Mom’s organs.
So right now we don’t have any definite plans for the future, except that more treatment is coming.
While this news has been a bit disappointing, none of us are overly shocked. We have seen Mom’s Lambda cells rising and knew that a change was coming, but we of course were disappointed that they jumped up so much within only a month. Despite all our disappointments, we know nothing surprises God and are trusting Him as we wait for what comes next.
Prayer Requests:
Pray for patience and peace for Mom, and for us as a family as we wait for a definite plan.
Pray for Dr. A that the Lord would guide him as he chooses the best treatment for Mom.
Praise God that there are other treatment options available.
“I still don’t know it all, but I know someone who does - God. As the Creator of all that was, is, and ever will be, He knows circumstances I don’t and sees things I cannot. “Call to me and I will answer you,” He invited the prophet Jeremiah, “and tell you great and unsearchable things you do not know”(Jer. 33:3 NIV). There’s so much I need to learn!
He knows the deepest corners of my heart, my motives, my fears, my prejudices, even the ones that are hidden from me. “You have searched me, LORD, and you know me,” wrote King David. “You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways” (Ps. 139:1-3 NIV). What an incredible comfort to be known this way!
God knows the plans He has for my future. The days to come that are still a mystery to me are an open book to Him. “‘For I know the plans I have for you,’ declares the LORD, plans to prosper you and not to harm you, plans to give you a future’” (Jer. 29:11 NIV). I long for the grace to watch His plan unfold!
He knows all these things. I do not. And because He knows, I need to depend on His knowledge and lean on His understanding. Surrendering to this God who knows is a choice - a choice that rests with me.” -Excerpt from I Give Up - The Secret Joy of a Surrendered Life by Laura Story
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