07/07/2026
The update you have all been waiting for. Or so we like to tell ourselves. š
Honestly, not a whole lot has changed recently, but things have slowly been on the up swing. This has lifted spirits around here, and has been such a blessing.
Darcie decided (in her words) to keep up her practice of being a princess and keep her wound vac for a few weeks. She loved the one-on-one attention from the home health nurse and didnāt want to let it go. We laugh because the nurse has been a lot closer to Darc than even I have been able to be over the last couple months. Truthfully though, we are really so thankful for her expertise and for listening to all of our concerns. She has been an incredible advocate for Darcie with all of the specialists. Bless her kind heart for putting up with our shenanigans this entire time!
The wound vac has really helped to heal Darcās incision from her lymph node site. As of last Wednesday, the dermatologist oncologist said to take the vac off, and start to pack the wound. There is still a spot that is about two inches long and about 1cm deep that we are trying to get to close by using a wet-to-dry gauze. Packing the wound has been a new experience and it is incredible to see it working. I can now add this skill to my resume! Haha.
Today, we saw the plastic surgeon and she said that the flap on Darcieās foot, and the donor site on her wrist are looking amazing! She did debride the little graft on her foot. The tissue under the graft is promising and looks healthy - meaning that a new graft will not be likely. As the plastic surgeon was debriding the site, she noticed some draining. She pushed on the flap and found that there was a hematoma underneath. The plastic surgeon is a tiny, mid to late 30ās, Asian woman. She is probably 4ft 11, and maybe 100lbs on her most bloated days. This woman used her entire body weight to push on the flap to release the hematoma. Darcie earned a badge of honor when the plastic surgeon told her to say something when she is in pain because she is so stoic. Good to know that the flap can take that kind of pressure and survive to tell the tale. Darcie is now on an antibiotic and the swelling in the flap has began to shrink.
She said that Darc is healing incredibly quickly. She gave the all clear to get rid of both braces, and has okayed both hand and foot movements without weight restrictions. Darcie can now relearn how to walk! It has been about 8 months since the last time that she walked normally. She is excited to push herself to learn how to walk again, but it will definitely be a process. She tried to put weight on her foot today, but has realized that her foot and ankle are very weak. The mind game of being able to use it is basically an entire puzzle that she gets to work through to remind herself that her foot is hers and is able to be used. We were talking about her foot yesterday, and she explained to me that she feels as if it belongs to someone else and has been planted on her body. I cannot begin to imagine that feeling, but it does make sense. Her foot has been so swollen and unusable for so long that Iām sure she will have to reintroduce herself to it and probably take it on a date to get to know it again.
Last Tuesday, she had her first immunotherapy infusion! Even though her IV pushed back at the beginning, the infusion was successful and she got a good first dose. The immunotherapy that she is doing is Keytruda. I donāt watch TV with commercials, but I guess it is often on commercials in black and white with very serious actors. We are really hopeful that it will help her immune system learn that the cancer cells are bad and will attack them. We were originally told that immunotherapy would be every 3 weeks, but insurance approved the treatment for every 6 weeks! Less pokes, same amount of medication.
We have heard from all of her specialists recently. They have been having conversations about this silly NUT carcinoma. The commonly used phrase that we have heard from them is still, āThis is an extremely rare and aggressive cancer. We need to get treatment started ASAP.ā Not sure what has recently lit fires regarding treatment, but me and the home health nurse are doing our best to heal her wounds so that she can start chemo and radiation. I guess Darcie is helping too. For chemo, the plan is Cisplatin. According to google, this is a āplatinum-basedā medication. Even the doctors are on board with the princess mentality! ;D Right now, radiation and chemo are planned for July 13th - next Monday! This could possibly be pushed back a week depending on if her foot has completely healed. She will continue to have labs drawn to make sure that her body is functioning how it is supposed to and that she doesnāt need treatments for the treatment side effects.
We have had our twin boys for our parenting time the last week, and have made Darcie come and do all the things with us! We have taken her out to our garden as we have pulled weeds, attempted a fire at our fire pit, went to see Toy Story 5 with our Get Out Passes (If youāve never heard of these, look them up. They are amazing and provide a very affordable way to do so many fun things across the state!), we have gone to a zoo, a family BBQ for the 4th, lit sparklers, and cleaned the kids bathroom (EW!). I have officially earned my driverās license for her wheel chair after almost dumping her out of it multiple times at the zoo. Seriously, pushing wheelchairs help build arm, leg, and core muscles. Too bad she is on her way to not needing it anymore, I guess that means that I will have to head back to the gym. Sacrifices will have to be made for her healing, I suppose. Haha.
For the locals - the bowling fundraiser is scheduled at the bowling alley in Brigham City on August 1st. We will be there with Darcie Strong bracelets and lots of cool people. If you are so inclined to donate any items to this fundraiser, please send us a DM and we can put you in contact with the individuals who are organizing the event. Come see our cute local celebrity - Darcie!
Also - if you would like some cheap entertainment, Darc is looking for someone to transport her and to hang out with during her treatments. A sign up sheet (yes, we are old people and use signup sheets) will be posted for those who would like to be considered for the position. We are thankful for anyone willing to take a day, or a few days during the next 7 weeks to make sure her princess vibe is upheld. I will make sure that snacks and meds are packed and she wears her tiara. Also, she would you know that she can wipe her own ass. IYKYK! š¤£
Anyways, we are so thankful for all of you! Keep sending the love, prayers, vibes, thoughts, and good juju this way as it is clearly working! Till next timeā¦ā¦..
