Sorry it has been so long but things have seemed so middle ground I didn’t know really how to report anything. I think I need to just do little updates more often but honestly we also have to make sure all of our family and friends are updated before I broadcast anything new.
In general the starting point was a switch from one chemo that made Brad feel gross all the time and was hard on his liver to 1 of 3 he was on 2 years ago, 5FU. Since I can’t go I have very bad date and sequence recall. When I was there for all of it I knew dates and details of everything…so frustrating but God has kind of pushed Brad to speak more for himself and be more honest about symptoms. From Day 1 he has been the “I’m fine, no symptoms I can remember” guy.
Last week he got a bone marrow booster on Monday, chemo on Tuesday and another booster on Thursday at unhook. That morning I woke up to Brad coughing a very weird cough. Coincidentally we were waiting on a Covid result from Russell being exposed and on quarantine (1st test negative, cold symptoms prompted a 2nd test) so I called the pediatrician and thankfully it was negative. I jokingly told Brad he didn’t have covid so stop coughing like that. I went to work since I wouldn’t be going to the unhook appointment and carried on. At 2:30 he said his breathing was weird and that he didn’t say anything at the unhook appt…”I’m fine” and NO to every symptom question. I called him and he could barely talk so I rushed home. He demanded going to the closest ER which is super unlike him.
I’ll try to condense this as much as possible but know from Thursday at 5:30 pm to Saturday at 11:00am I was in a freaking rage trying to get him out of that damn hospital! What should have been a 3 hour procedure that has been conducted since in a drop off, do the damn thing and pick up situation was a freaking nightmare. On top of ALLL of it we had plans to spend the weekend in Lawrence celebrating Carter’s 21st birthday. I had reservations, plans, big ideas and hoped to show the kids a great time in the weirdest year with them being so awesome to adapt. Sparing the details he was in the ER for 23 hours, barely fed, barely info reported out to me, I pretty much yelled at everyone I could and begged them to let me come get him. He was begging on his end too so we were able to pick him up at 11am and only be an hour late for lunch with Carter, friends and family for his birthday.
We threw a big party at Johnny’s which is the bar I worked at in college and where Brad and I both celebrated our 21st birthdays so it was a fun full circle kind of moment. The college kids thanked us over and over for hosting and the fraternity boys seemed so happy to be able to gather outside of their house. It has been kind of rough, big spotlight on the greek community and they’ve been so strong to just deal with it.
We watched our last High School soccer game for Russell’s freshman year then had the great enjoyment of watching him play with his Club team KCSG Academy 06 and they won 7-0. Russell usually plays midfield but coach put him in at Center Back on defense and he did great despite not being his normal spot. He said, “it can be scary because you have a guy running full speed at you and you have to get the ball from him.” Russell is fierce, he owned that new position and performed for his coach. He played almost the whole game so he was a happy boy!
We were watching soccer rather than giving out candy but enjoyed some time with cuzzies Michael and Rory who both dressed up as Trump in 2016 and this year. So funny! Whitney celebrated Thursday through Saturday as a school girl, “Pink Whitney” and the last night she was a bachelorette. I’m hoping when she is back in KC we can revive Halloween and go bigger than in years past. I love dressing up!
So the Brad update. Between one drain of fluid from his abdomen and three from his lung he had 7.7 liters taken out in one week. Clearly that is a lot and will be hard to manage at that pace. His doctor has a few ideas on how we can help relieve that fluid production so we have a referral to a new liver doctor and hope he’s a candidate. BIG PRAYER #1!!!! Ideally that will solve a lot of this issue and give him a better quality of life. He’s very tired, any kind of outings wear him out and a big day means the next day he will be reclined in his chair and resting. His CEA and bilirubin rose so BIG PRAYER #2 is for his cancer to stay stable as we fight to get his liver and symptoms stable. Thankfully he was open to having a home health nurse come visit with us. She will serve as the safety net between the Cancer appts and everything else. To qualify for this you have to talk about your struggles and of course Mr. Sunshine was “fine” not troubles and very little pain. He just doesn’t want to burden anyone including home health! BIG PRAYER #3 that this is approved so he can have PT at home to gain strength, have a watchful eye on him to make sure he’s doing ok and not have to constantly guess how he’s REALLY doing and social work support so I know what forms and approvals need to be established so that he’s protected and we are ready for anything.
I want to give a show out to my company, they remain so supportive both professionally and personally. God knew what he was doing when I made the switch to ECCO Select 4 years ago. I literally could not do any of this without their unwavering support! I also want to thank our church, Woods Chapel Methodist! They have carried us through this battle since DAY ONE and send us very sweet notes of encouragement weekly. My biggest and most important thank you is to the youth ministry for covering my children and especially Russell this year. I can see the light of his faith shining brightly and the comfort he has from his faith. He seeks answer in scripture when he struggles and gives his worry to God.
Today is election day, BIG PRAYER #4, that our nation can find some common ground and move forward with more hope and peace than what we’ve seen this year. I pray hard that the mainstream media will get their act together and report in a more even manner which is how I learned journalism in high school and college. It is so clearly slanted towards division which is not doing anyone any justice at all. I don’t care what your views are, people are being brainwashed into thinking such negative things and if they had all the information to choose their viewpoints we wouldn’t have so much frustration. I think everyone can agree to that.
Sending out much love and light! Thank you for praying for us, they are felt, they are needed and appreciated!