Disease Progression and the Start of a New Therapy

Jason here.  It's been a while since our last update.  We've had a really good Winter, Spring, and Summer together.  We've packed in a lot of great family time, trips, and experiences together.  And, it's been a sweet time of stability and relative normalcy.  Linds has been her spunky, usual self (mostly) administering our lives again (haha).  About a month ago, however, Linds has started to feel some gradual, declining changes in how she feels.   

I resigned my position in December to take a part-time position with our clinic working remotely from home.  I've been exceedingly grateful for the opportunity to remain gainfully employed and maintain benefits while also having less work responsibility and more time at home to be available to Lindsey and the family.  For the most part, it's been a really good situation to provide our family the margin and extra attention it needed and continues to need. 

That being said, we've had a full summer together.  The boys have done swim team, Lindsey and I have been to the Caribbean and Europe, our family has been to the lake, the beach, and even taken a road trip through DC to NYC for a long weekend.  Lindsey was feeling well so we decided to go for some big trips and have some experiences.  

For the most part, Linds has felt well during a lot of the Spring and early Summer but, about a month ago, she started feeling a little more run down, a little less energetic.  Before our family trip to the beach in late July, Lindsey had a set of scans that revealed likely progression of disease as indicated in swollen lymph nodes at many body levels and some thickening of areas of her lungs.  At that time, the decision was made to switch Lindsey to a new therapy: to a new chemo regimen.  

Because we had the family beach trip and a subsequent long weekend road trip to New York already planned, the decision was made to arrange the start of her new chemo upon our return of those two trips.  So, Linds started her new chemo a week ago from Thursday, 9 days ago.  She's been told to expect that this chemo is a bit more toxic than what she's been on recently, and that she'll likely lose her hair again (which is always a major bummer).  

The new chemo will result in a nadir or low point of energy on day 4-5 after administration.  That unfortunately coincided with the first few days of school for our older three boys this week.  And, Lindsey did need to slow down as she felt the effects of the drugs.  But, she continues to feel depleted even now into day 9.  

Linds had a week follow-up on Thursday (as is standard) and her blood work revealed that her white blood counts and neutrophils are drastically low.  These numbers indicate a weakened and vulnerable immune system.  And, it totally jives with how Lindsey is feeling.  To address this, Linds is being given a drug for 3 successive days (given in shot form) to hopefully rev up her immune system and get it rebuilding the appropriate blood cells ASAP.  

In light of all of this, would you please pray for Lindsey especially right now?  We didn't expect her to be so low and so knocked down.  She's especially tired and weak.  And, she's suffering from two other acute issues: one is chemo related and the other is an unfortunate physical happenstance that's developed during the last year but can't be managed because she's on special therapy drugs.  The first is the expected side effect of chemo: a sunburn feeling along the mucosal lining of your body which, most notably for her, is within her throat and mouth.  Eating, drinking and swallowing are especially painful right now.  The second issue is a weird dental issue: she's cutting a molar, aka a wisdom tooth.  This is especially rare but, for whatever reason, Lindsey has a wisdom tooth that never came in while she was younger.  And, again, not sure why, but this tooth has decided to appear or move toward other existing teeth in the back of her mouth.  And, this causes a lot of pain.  She's seen an oral surgeon but removing a molar in an adult is not without its risks. There’s a chance that the wound wouldn’t heal and the gap wouldn’t seal for an otherwise healthy person, but the therapy drugs and bone drugs Lindsey’s on likely increase the risk of poor healing.  The fear is that a surgical resection would create a bigger issue and bigger infection vulnerability if a gap was created and it didn't heal and/or seal back over.  So, she's kind of painted into a corner with this.  Until this week, she's mostly been able to manage the pain with mouthwash and care.  But, probably because of the chemo affecting gum and mouth linings, she is in acute, tear-causing pain and can't seem to get relief for this at the moment.  

So, please pray for Linds and for relief.  She's hurting.  She's fighting through the pain but, when it hits, it's fairly debilitating in what you can continue to do while experiencing it.  Also, please pray that the immune boosting sequence of shots would work and not create further side effects like bone pain as this seeks to activate things in the bone marrow. 

Pray also for her spirits and for our family.  Kids back to school and establishing that routine has felt like a heavier than usual burden.  They've had some bedtime tantrums from all of the overstimulation I'm sure but it's just been a hard week.  And, I think the kids are perceptive that mom isn't doing well and it has a knock-on effect with how they behave, probably not having the developed emotional tools with how to process what they're feeling and observing.  (As if we as adults have all the tools...).  

Again, thank you all for your continued support through prayer, well wishes, food, playdates, and help in and outside of our home.  We continue to feel overwhelmed with gratitude for all of the support and overwhelmed with being able to thank and appreciate everyone sufficiently well.  But know that even the smallest things are greatly appreciated.  

Jason