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August
22
2020

Moving Websites

Hey friends! 

One of my dear friends from college has set up a care community for us. Their family has been walking the melanoma journey for 10 years, so they have been a sweet source of support to us and able to uniquely relate to where we are. We are so grateful for all of the help you all have already offered. Covid has presented new challenges to accept help, on top of the normal difficulty in knowing how to ask for and receive help. We are grateful to Courtney for taking on the role of coordinating this new care community for us! She graciously wrote a more detailed explanation about this website and how to use it on the last Caring Bridge update (August 16). For simplicity’s sake, I will start using only that website for updates. I believe you can register as a member on our website, and you will be notified by email when we post personal updates . Courtney’s update below does a good job of explaining it in more detail and she has her contact info available if you need help!


Here is a quick update on my health and our family. I will have a set of CT scans on Monday. As long as I stay distracted and don’t think about these, I am ok. If I start to think about the scans, I honestly can get terrified. Staying distracted is key!
Every day is a bit different and there is no consistency or ability to predict how I am going to feel. On harder days, I experience side effects of treatment. The rheumatoid arthritis symptoms are still pretty significant, and I am still dealing with a good bit 
of pain. The adrenal fatigue, from the treatments, seems to have set in worse this past week. I have experienced fatigue in a new way. I also get headaches occasionally and waves of nausea at times. 
On a good day, it takes me about an hour to get going (from the pain and stiffness) in the mornings, and then I will have 4-5 hours of energy with not much pain. I have started to hit a wall after lunch needing to lie down for a few hours to make it through the evenings. On a good day, I might get another wave of energy to get through the evenings and be able to do something active with the kids and Luke. I have been spending my energy and the good days trying to focus on the kids and Luke. 
Thank you all for the generosity and love and support you are giving to our family. We will post all updates, including next weeks scan results on the new website. 
We truly appreciate your support! 

Love, 
Kira

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August
17
2020

August 16, 2020

To: The Stokes Family Army

 

Welcome to a new site that we are launching to help the Stokes Family. 

 

My name is Courtney and I am a friend from college and have traveled a similar trial. We were able to stay afloat with the love and support by friends and family. I know that all of you are desiring to help. My goal is to provide you with options, as we all work together to love this family well during this difficult time. 

 

This site will allow us to see needs that arise and can be met by local and distant people.

 

Meals and timed/scheduled activities will be posted in the calendar portion. Pink dots show items that can be volunteered for. Click the item to sign up or get details.

 

The notes portion will contain needs that arise that are not time sensitive, a list of ideas of how to bless the family, and areas you can use your own creativity to surprise them. 

 

The announcement section will contain new information for the family on how they are doing. 

 

Please feel free to reach out to me if you have any questions.

 

Thank you for partnering with us, as we surround this sweet family. 

 

The Body of Christ truly sustains.

 

Thank you for joining the army,

 

Courtney

 

This is a link to the new site. The above announcement is saved there as well. Please log in as a member, I will accept your request and then you can volunteer for specific positions. Their site is titled "Stokes Family"

 

Please email me if you have any questions corkyalv@aol.com. 

https://my.lotsahelpinghands.com/community/stokes-family-3/home

August
11
2020

August 11, 2020

Just wanted to add a quick update from yesterday’s treatment. I was able to rest a lot yesterday and slept well overnight. I have felt better today! The kids and I were able to get out in the yard for awhile this morning and they just left with Gigi. I’m planning to rest this afternoon while they’re playing with her. Thankful to say that all things considered, I’m doing ok today! Thanks for everyone praying for us and checking in on us! 

Love , 
Kira 

August
11
2020

August 10, 2020

Hope this finds y’all doing well. Praise the Lord that temps are not staying in the upper 90s anymore. So thankful for all the rain we have had. Whew. I had an oncology follow up and treatment this morning. My doc is going to consult with Rehumatology and see if there's an additional med we can use to help
decrease the inflammation/rheumatoid arthritis symptoms. We are still working to get lower on my steroid dose. As for the headaches, Ive been getting IV fluids with the last 2 treatments, and we think it’s a heat/hydration issue. Despite side effects, we are going to keep doing everything we can do to push through this year of treatment. I am still and will continue taking several medicines to help with the side effects. We will be doing another CT scan on August 24. The scans are typically every 3 months, but he said he's just doing it sooner in an abundance of caution since I'm on the higher dose of steroids, which may decrease efficacy of the immunotherapy.  I was tired and not feeling well after treatment today, and thanks to Gigi taking care of kiddos (on her birthday even!), I was able to come home and rest. My mom came over after a full day at work and helped with kids and housework. Our moms and Lukes dad help us out so much with the kids and all the things. I can’t imagine trying to do this without all of their support and help. A sweet neighbor /friend from church (who has a newborn of her own!) brought us supper tonight. Our church has started bringing us meals weekly. Our next door neighbors let us use their pool anytime. We have been the recipients of so much generosity in so many ways. It just stops me in my tracks to think back through all of the ways y’all have loved and supported us and given to us. People are constantly sending me notes and messages of prayers and thoughts and encouragement. We are well loved and well cared for and well supported! I’m grateful to be able to list so many ways that we are being loved on. Our new puppy has been a real gift from God to us! She is the best friend and such a good girl. She’s well behaved, trained, sweet, obedient, eager to please. We just love her and are so thankful for her! Thankful also for all of your friendship, support, love. 

Holding fast to this comfort as the next scan nears...

“Let us hold fast the confession of our hope without wavering, for he who promised is faithful. - Hebrews 10:23” 

He who promised is faithful! 
Love, Kira 

July
31
2020

July 31, 2020

Hey friends! We are so grateful for all the love and support and everyone checking in on us. This last treatment has offered far more to endure than the 2nd one. I have battled migraines, weakness, fatigue, severe muscle cramping overnight, and the joint pain has been a bit worse than before treatment. I have had to get IV fluids twice in clinic. The SC summer heat is not helping a thing right now, especially for someone who lives to be outdoors.  One week to go until my next treatment. Time flies when you’re having fun, or something like that 😜  Our 8 year old dog passed away unexpectedly at the end of June, after our 17 year old cat passed away in Feb, so we have been dealing with major voids around here.  The kids have had a hard enough time with our rigid quarantine,  and losing our dog just tipped everyone a bit. We adopted a new friend on Sunday! Her name is Sullivan April Stokes, “Sullie”. Will post some pics of our sweet new girl. Sullie has been such a blessing to our hearts! It’s been really fun for the kids to have her to play with and be silly with. Her companionship and having her around has already filled some of the void. We are longing for cooler days and being able to play with friends again! We’re continuing to do our best to stay creative to help the kids through this time of quarantine at the same time that we endure my health issues. Thankful for grandparents who live nearby and help with /play with the kids. Thankful for all of our friends and family and church family and all the various means of support and care y’all show us in this strange season.  

Praying through the following this week as the days have been long and hot and monotony has become more constant. 

“Set your minds on things that are above, not on things that are on earth”. - Colossians 3:2

Love, 
Kira 

July
14
2020

July 14, 2020

Wanted to give a quick update from my last treatment. I just finished my 4th follow up in a week today, so I wanted to wait until after all of these to update!  Overall, this one went far better than the first. I am still on a fairly high dose of steroids, along with 3 other meds, to treat the multiple joint inflammation, and am still dealing with what seems to be a new baseline of moderate joint and muscle pain/stiffness. Even so, it is far better than my first treatment. We hope this new baseline is temporary during immunotherapy. That said, the new baseline currently is tolerable enough to get through the year of treatment, with the different meds I am taking to counteract the inflammation and pain. I have good days and bad days with the pain and fatigue. My blood sugars did stabilize with some drastic diet changes and med changes. Surgically, I have recovered well and not had any of the major complications we were praying against! We are still hoping to taper my steroid dose down, and discussed today a new taper schedule which is even slower than slow 😜 so hopefully it will go better. Please pray I can taper down to 10mg from 20mg. I also have my next treatments coming up on Monday, June 20, then again August 10, and every 3 weeks after. Thanks for the phone calls and letters and gifts and meals and flowers and love and support and prayers! We are so so grateful to know the love of a large group of supportive friends and family. 
The kids are doing ok. Sadly, with Covid cases spiking like they have, we are still quarantined. We have been trying to swim everyday and go for lots of golf cart rides to break up the days. We are homeschooling again this year, so we have also started lessons back which also helps break up the days. My big kids have loved FaceTimeing friends, so let me know if your kids want to FaceTime with mine! We love y’all. We miss fellowshipping with you.  I am attaching a few photos from recent happenings. 

“Let us hold fast the confession of our hope without wavering, for he who promised is faithful. - Hebrews 10:23

Love, 
Kira 

June
17
2020

June 17, 2020

Excited to say that I had my first clean scan today! Hallelujah! The last 4 months have held 7 scans, 2 surgeries, 3 biopsies , and 3 path reports. This was our  first one that showed no evidence of disease! Sweet relief. Thank you all for praying and staying in touch. My blood sugars have been stable and I’ve been able to stay at 20mg of prednisone since changing the way I was taking it. Goal is 10mg so will continue to try to taper as the rheumatology medicine has time to work. Next treatment is June 29. It will be 3 week cycles of IV infusions for one year, with scans every 3 months. We are so relieved to have a clean scan! Hallelujah! Please pray that I would tolerate the immunotherapy this go around. Photos are of flowers from my gardens that have brought us all so much joy recently. I found Collins walking around our yard picking flowers the other day and it warmed my heart so much. 

He will yet fill your mouth with laughter, and your lips with shouts of joy .  - Job 8:21

Hallelujah! 

Love , 
Kira 

June
13
2020

June 12, 2020

After having such a tough time with hypoglycemic episodes from the time I woke up until lunchtime, for several days, I spoke to my endocrinologist Tuesday, and she had a few suggestions that worked amazingly well! I haven’t been chasing blood sugars since Tuesday morning and they’ve been mostly stable. Wednesday and today have been good days! I’m so grateful to be able to say that. And- please keep praying, but I did go back down on my steroids to try to get closer to goal and have made it longer this week than I did last week on the lower dose, even having a good day today! So thankful to report this. Please keep praying about the steroid taper. As I taper from steroids, the rheumatology medicine has time to work also to treat the generalized, debilitating, joint pain. On Wednesday, the kids and I went for an easy stroll around the block, and then we went swimming for a few hours! We played board games and of course obligatory movie in the rain (nap for the littlest) to cap off the good day 😍. My spirits were good and we all enjoyed each other so much that day. Today was mostly gardening (because the weather was a suprising treat!) puzzles and board games, and my spirits have been good today also. Next week is my scan on Weds morning and follow up Friday. I am trying to stay really distracted from the scan, because when I do think about it, I honestly am scared. I am taking these thoughts captive and not dwelling there, but I am scared. The line between stage 3 and stage 4 feels very fragile now, but, as my dear friend tells me, “Because of past mercies, we are bold to pray for present needs.” 

I have been reading through 1&2 Peter this week and am grateful for “His precious and very great promises”. “The Lord knows how to rescue the godly from trials”. 2 Peter 2: 4& 9 

Photos are of the kids on Wednesday- the littlest is such a snuggle bug/lap baby- and always has been! She is rotten and so adored! Also pics of flowers from my garden. I love a kitchen full of fresh flowers 😍 

Love, 
Kira