Latest Updates (Archive)
Latest Updates (Archive)
Thursday, September 22, 2022 - 11:04am
I met with the care team this morning and they have utilized every tool in their toolbox to fight the inflammation that is overtaking Steph. We are focused on her comfort as she continues to fight. Her breathing is labored, but she is stable. She is unresponsive at this time, but in very good hands.
It is a blessing that today we had Steph's favorite nurse, Jules. Who just as I was typing this said that Steph had been on her mind the last couple days during her devotionals. When she saw her on the schedule, she knew it was the Holy Spirit. She then sang the most amazing rendition of There's Something Special About That Name that I have ever heard and then prayed with us both.
Thursday, September 22, 2022 - 6:10am
I am grateful this morning for the training and experience from hospice care for my dad. There is a muscle memory that is helpful in the physical care that makes caring for Steph "easier". I was able to help get Steph cleaned up and change the bed with fresh sheets for the day. Something simple that does make a big difference. Who doesn't love fresh crisp sheets? Doing my best to keep her comfortable and knowing that I am here and that all of you are cheering her on out there.
Thursday, September 22, 2022 - 4:35am
Steph's mom was able to stay with her from about 8pm last night which gave me time to head home and see the kids, shower, eat some food, and get some good sleep.
The focus remains on Steph's liver and the numbers continue to head the wrong direction. I will update again after I visit with the team today.
Wednesday, September 21, 2022 - 3:15pm
The team just stopped by for an update earlier today. They believe that Steph may be experiencing TMA (thrombotic microangiopathy) which is causing rapid inflammation throughout her body. They are going to be giving her Narsoplimab (I am pretty sure that is what they said, but will verify). It is still in the early phases of use, but has been effective at treating TMA. They are also going to insert a nasal feeding tube to assist in medication absorption and feeding if necessary.
Liver and kidney numbers remain fairly stable, but they are concerned about the cognitive issues and extreme tiredness.
EEG just came into the room to perform a brain scan study. They want to be sure to rule out any seizures or strokes that she may be having that we haven't been able to notice.
That is the game plan at the moment and I will update as I learn more.
Sunday, September 18, 2022 - 8:20pm
Steph has been admitted to UWMC and is starting treatment for her liver. More details tomorrow.
Monday, August 22, 2022 - 2:30pm
The liver has stabilized and the focus now is on her kidneys. They are starting IV diuretics today to hopefully get fluid moving through her system. The kidney team is keeping a close eye on things for the next 24 hours. If there is not improvement they may look at dialysis to give the kidneys some time to recover. Ideally the IV today will help and that won’t be necessary.
Sunday, August 21, 2022 - 10:00am
She’s doing better this morning, but they are still trying to figure out what’s going on with the liver and kidneys. She should have her echocardiogram shortly to check out the status of her heart (which by all symptomatic indications seems to have improved).
Her stem cell graft is officially in and doing really well! They are very happy about that as those new cells are already being put to work. There are a number of labs that should be coming in to rule out infections in the liver and kidneys. More specialists from those teams will be meeting with us today.
Saturday, August 20, 2022 - 8:30pm
Her potassium levels are high now. They did an EKG and hooked her up to a continuous heart monitor. They are giving her a breathing treatment with some medication to bring down potassium levels. Also getting some dialectic IV fluid and some insulin this evening.
Thursday, August 18, 2022 - 4:18pm
Hospital update: Steph is still feeling very fatigued and short of breath when doing any physical activity. She had an x-ray, EKG, and echocardiogram today to take a look at some possible fluid buildup around her heart. We are awaiting an update from the cardiologist team once they have a chance to review.
She is doing well overall, but is not able to move around much or eat much at the moment. Will update as we learn more. The great news is that her white cell counts are on the rise which means the new stem cells are getting to work!
Tuesday, August 16, 2022 - 1:40pm
Steph has been doing well, but very exhausted the last couple of days (to be expected). Last night she did hit the magic 100.4 degree temp mark and I took her in to UW Medical Center to be admitted. She has not had a fever since last night, so they have her receiving some antibiotics and are watching closely. At the 48 hour mark they will decide if she is good to head home. I am still awaiting her COVID test to clear before I can visit her at the hospital.
Wednesday, August 3, 2022 - 9:00pm
We are HOME! The kids came out wishing Steph a happy birthday, which was a great homecoming. We are exhausted and looking forward to a good night’s sleep. Back to the clinic tomorrow morning for labs.
Wednesday, August 3, 2022 - 5:05pm
Stem cells have all been infused. There were 4 bags of cells and each took about 10 minutes to feed. Steph had moments of being flush, nausea, and some confusion, but it went well overall. She did have a slight reaction about 15 minutes after the infusions, but has been doing well and resting. They took some blood cultures and are keeping a close eye on us, but are not expecting anything else at this time.
They will continue to check vitals every 30 minutes for the next couple hours to keep a close eye on her.
The orange you see her with is to help with the smell/nausea that is caused more so by the preservative used when freezing the cells than the actual cells themselves.
Wednesday, August 3, 2022 - 12:35pm
Radiation is complete and we are back to the 5th floor to begin hydration and pre-meds in preparation for the stem cell infusion. Steph's feeling good!
Wednesday, August 3, 2022 - 11:10am
Steph is hanging out with this giant radiation robot now. Procedure should take 30-40 minutes.
Wednesday, August 3, 2022 - 8:30am
Labs complete and Steph is now getting a few hours of hydration via IV as well as a magnesium infusion in preparation for her total body irradiation scheduled at 11am. We will head downstairs to the radiation office around 10:15 to get remeasured and prepped for the hour long radiation treatment.
Tuesday, August 2, 2022 - 9:30pm
Tomorrow is the big day! Here is what the schedule looks like:
6:30am - Lab Tests
7:00am - Hydration infusion (3.5 hours)
10:30am - Remeasurement for Total Body Irradiation
11:00am - Total Body Irradiation (1 hour)
12:00pm - Follow up with Radiation Oncology Doctor
12:30pm - Infusion of Blood Stem Cells (6.5 hours)
2:00pm - BMT Team Visit
I will post updates throughout the day here and maybe even a livestream if I can figure it out.
Friday, May 27, 2022 - 6:00pm
ALL R3 Induction treatment plan is starting as I type. This treatment is one - 28 day cycle of chemotherapy (see schedule below).
Saturday, April 30, 2022 - 6:30pm
We are in room 8004 to begin round four (2B) of the Hyper-CVAD treatment. This is the most private room, but also the one with the worst view. :) That will just encourage Steph to make her laps around the floor for a view of the bay at the end of the hall.
Today we watched Julie's soccer game where the Red Dragon's got their first win! It was an exciting 2-1 game. Julie played goalie during the second half and had a great block to keep the lead. It was a wet one, but we came mostly prepared (I forgot to wear my boots).
We celebrated with some pancakes at IHOP and enjoyed some downtime at home before heading into UW Medical Center. Steph will begin her first treatment at 10pm and should be discharged around Wednesday.
Monday, April 11, 2022 - 7:00pm
Lumbar puncture was a success although more of a challenge as scar tissue builds in the area. Peter was able to visit today and was excited to see mom and walk some laps around the floor with her. My mom made some potato cheese soup this evening and I brought an insulated mug full out to the hospital for Seph for a reprevive from the hit or miss hospital offerings.
Treatments are continuing and Steph is tenatativily scheduled for discharge on Thursday.
Sunday, April 10, 2022 - 3:22pm
Julie and I were able to visit Steph this afternoon. She is about to have another lumbar puncture for CFS testing and chemotherapy treatment.
Saturday, April 9, 2022 - 8:45pm
Steph is back at UWMC 8SA for cycle three (2A) of treamtment. First chemo starts at 9pm. See got a room with an amazing view this round!
Monday, March 21, 2022 - 3:45pm
Steph just had another lumbar puncture treatment. Went fairly smoothly and she was a trooper considering the muscle spasms she has been dealing with. You can join us in prayer that those would clear up. She is getting a new dressing on her PICC line now, and then should be able to rest freely the rest of the day.
Saturday, March 19, 2022 - 7:10pm
We are back at UWMC for cycle two! Steph now has the "Platinum Team" looking after her from here on out. Didn't get the platinum view, but that is not exactly what we are here for. :)
Monday, March 14, 2022 - 11:00am
Yesterday was a busy and productive day at UWMC. Steph’s new PICC line was installed very smoothly and without any pain this round. Julie was here for that experience and the nurses included her in the process. She handled it much better than her dad handled watching his first PICC line procedure (I almost passed out).
Doctors are confident that they have got the infection under control and that the rest of the antibiotics can be administer at home, so it looks like we will be heading home this afternoon!
Treatment is currently still on schedule. We have a lumbar puncture procedure tomorrow at SCCA and possibly another bone marrow biopsy (sometime this week pending blood counts). If things progress as expected, we will be back at UWMC on Saturday to start cycle two. Of course, we know - especially now - that we take the battle one day at a time.
Thursday, March 10, 2022 - 5:12pm
After a really long night, we had a long day to follow. They were able to identify an infection in Steph’s blood and are targeting that with the appropriate antibiotics. Steph also had a visit with optometry to take a look at some bleeding behind her eye. Nausea has been a struggle, but is being managed well with prescriptions. Hair loss is a real thing and underway. Finally, someone in the family will have less hair than me. 😛
Best part is that we are back on the hematology and oncology floor, so they are taking good care of us and the accommodations are wonderful. We don’t have a water view this stay, but they do have a beautiful rooftop courtyard to look at.
Thursday, March 10, 2022 - 12:30am
We are currently in the ER at UW Medical Center to get Steph checked out as she had a fever that met the requirements to head in. She is doing well and currently resting. Infection is the biggest risk during her treatment, so the team here does not mess around. I expect we will be in the ER until the morning until we are formally admitted (which will definitely happen).
I’m a bit behind on the updates, but despite our current ER visit things are progressing along. Steph had a second lumbar puncture and chemo treatment yesterday and we were happy to see the leukemia numbers in her CSF drop.
Earlier today (yesterday now actually) she had a blood infusion and was feeling better after being very fatigued this morning. The very slight fever had been poking around since Tuesday evening and it finally hit the ER levels today (and actually she hasn’t had a fever since we have arrived). Will keep you updated as we progress on this new ER chapter of the adventure.
Monday, February 28, 2022 - 5:45pm
We are home! We were discharged this afternoon and we are all back home together. Round 1 of inpatient chemotherapy is complete! No slowing down on the battle though. We have appointments tomorrow and Wednesday at SCCA for follow up treatments and labs. Updates from those appointments to follow!
Thursday, February 24, 2022 - 4:47pm
We made a couple more loops around the floor this evening. The view of the bay and bridge at the end of the hall are a good motivator. Our nurse is already preparing us for life at home and teaching (and quizzing) us throughout the day. A quiet afternoon/evening for us now. Next dose of chemo will start around 9pm.
Thursday, February 24, 2022 - 12:00pm
First dose of chemo was a success and dose number two is currently in process. Steph had a great first evening at UW. Only side effect so far was some night sweats.
With UW being a teaching hospital the rounds are a big event here. The current plan as of this moment is that treatments will continue through Sunday and we may be discharged on Monday. We will then be following up with regular (about 3x per week) in patient visits for further treatments. Then we will start the cycle again in a few weeks. Obviously those plans could change and we are still focused on one day at a time.
The physical therapist just stopped by to check in and give some tips for exercising while we are here. We made two loops around the floor and have a goal of 8 for the day (1 mile). Steph is already feeling better in the energy department that we we arrived yesterday. Steroids are an amazing thing.
Wednesday, February 23, 2022 - 7:00 pm
We have been admitted to UW Hospital (we have one of the best views in the house) at 1pm and it’s been a busy afternoon and evening. Steph had a PICC line inserted, an EKG, an echocardiogram (which was amazing to watch), blood draws, and a CT scan. She is currently getting a dose of fluids in preparation for her first chemo treatment that will happen in the next couple of hours. See the chart below on the HyperCVAD A treatment for a preview of what the next few days have in store. We have such an amazing care team and know that they will be taking great care of both of us during Steph’s treatment.
Wednesday, February 23, 2022 - 9:19 am
We will be checking in to UW Hospital at 1pm today begin treatment.
Sunday, February 20th, 2022
Steph has remained fairly stable since our appointment on Friday. We are packed and ready to head to the ER should we need to start treatment prior to Wednesday. We are trying to let her rest as much as possible. Our YouTube history is full of videos of those that have gone before us in this journey. Their tips and trick of navigating what is to come is helpful as we are still processing this news. We enjoyed sitting outside in a sun break today. Deep breaths of fresh air is good for the mind.