I realize it has been since Christmas that I updated, my meal train link is updated more regularly. https://mealtrain.com/g475e8

Quick version is Brad was on Lonsurf the last 5 months. He had a hospital stay in January after his “lung drain” thoracentsis resulted in a punctured lung and infected fluid. He had a chest tube for a week and was on high powered antibiotics. It was a mess with covid restrictions, trying to work and take care of Russell plus the Big kids were still at home and not back at KU until the beginning of Feb 2021. We all made it through and Brad came home after 9 days. He took a break from chemo until he gains some strength and it showed signs of leveling out his CEA (cancer markers) but in recent months it has been jumping by about 20 points each month.

In May we stopped the Lonsurf and went into research mode. We sought second opinions from Mayo and MD Anderson but they agreed KU was doing everything they would do and didn’t have additional recommendations. We then turned to the KU Research department which has been an amazing group to partner with in the whole body decision making process. Dr. Baranda has been amazing and her big concern is the lung situation. She is pushing the team to come up with a solution to stop the fluid going into his lung so it will stay in his abdomen and be easier to deal treat. A tap to the abdomen is much less invasive than pulling fluid between ribs and the lung every 4-5 days. The risk of infection and complications is high. He’s had complications and hospital stays but the team in Interventional Radiology has been terrific and incident free the last several months.

We celebrated Carter’s graduation with family and about two weeks of visitors. It was a lot of fun and we’ve been working on purging and organizing ever since. Having 5 of us back in the house with ALL of the college stuff in tow makes for crowded storage spaces. The weather in May was pretty chilly and rainy so we took advantage of better weather Memorial Weekend to do some cleaning.

Research Mode: Brad has had scans, a new liver biopsy and currently is going through DNA testing to see what else they can seek out to treat his cancer. He is receiving the most in-depth research possible. Dr. Baranda, didn’t want to wait any longer so she and Dr. Chuda agree to put Brad back on a chemo that has worked for him in the past. Dr. Baranda has been amazing and is “a big deal” an KU, when she speaks people listen and react. We know she’s working behind the scenes getting appts set, testing done and pulling together high level doctors to look at his case.

Brad will start Folfox on Monday, 6/7 (tomorrow). This is a pump he will wear for 3 days and causes hand and feet pain. We will meet with his Nurse Practitioner, they will do labs then his treatment. We will go for his lung drain at 1pm then off to Russell’s soccer tryouts. It will be a busy and mentally draining day. We need prayers for the side effects of the chemo to do more good than bad to his body and for the drains to continue on a normal and incident free track. We finished Russell’s soccer season so no more trips to St Louis.

After tryouts this week they are going to Minnesota by the Canadian border for a fishing trip 6/16. We have the drains and chemo scheduled so that he will be primed for a good trip. The boys are looking forward to it and I plan to have some relaxing time and maybe some GIRL time as well. I turn 50 on 6/13 so I’m celebrating all month properly with my various circles of friends.

We are going to California in early July and look forward to spending time with my sister’s family and some of Brad’s high school friends. It should be Epic!! I can’t wait! We hope to sneak in another trip before school but need to get through these next 5 weeks.

Thank you for your continued prayers and support! We are constantly reminded how big our TEAM is! This weekend we saw some old friends from past teams and the warm smiles and hugs were priceless! God has brought so many people into our lives through sports, dance, our previous school and work lives…we try to keep them close no matter where life takes us. I keep this blog going because I know there are other parts of our support system out there praying for us that we don’t get to see. On my heaviest days I think about everyone that tells me regularly that they pray everyday for us. It is such a comfort and never ceases to touch my heart. Seeing old friends from YEARS ago playing little kid soccer, giving us the most heartfelt love and support is priceless❤️ Thank you for being apart of our story and cheering us on. OXOX

With caution I’m super excited about our progress after Chemo #2 on 10/15.  We set goals and made sure to take advantage of energetic times and get Brad the rest he needed when his energy needed to be refueled.  Going into the weekend without any experience after Chemo 1 and knowing what to expect and avoid after Chemo 2 is night and day difference.  For now we are just focused on nutrition and rest and enjoying a week with no appointments.

I’ve been reflecting on everyone’s needs and how they collide at times.  I think everyone sees when I’m at my breaking point.  My typical solutions is to pretty much run for the door to go run an errand or anything outside of my house to get some non-cancer related fuel in my body and mind.  I hope soon I’ll incorporate weight training and stretching because I feel like my muscles have shortened from the stress pulling on them from head to toe.  Ugh I need to release that stuff asap and get rid of these aches and pains!

So with the kids…I’ve been trying to watch for trouble signs and they pop up in different forms and different times.  I remember seeing moods and behavior in other families dealing with cancer and now see similar behavior around our house.  I remind myself that they are suffering from the weight of all this along with normal trying to grow up kinds of things.  I just pray they aren’t impeded by this stress or thrown off their trajectory because they were all on a really good path prior to 9/15/18.  My main objective is to keep them as close to that same path as possible.  I try to remind myself, Brad and each of the kids that it is ok to feel “off” or have to have some mental health breaks however they need to get it but then also get back to that place of focus.  I remember being a teenager and how hard and stressful it was.  The thought of putting all of this on top seems suffocating.  I had my own suffocating circumstances and came out strong than I ever would have so I know they can too.  Bad moods aren’t such a bad thing and we need to give each other time and safe places to release that negativity so it doesn’t stay bottled up.

Going into this week I’m hoping for less short fuse situations, more Zen time and using this seemingly light week to get some rest.  We also have to do list items to get checked off before the whirlwind of family visits starting with Whitney’s Alice In Wonderland ballet and then the holidays.  Brad spent a lot of Friday picking out a new vacuum so that should help out with the to do list especially since everyone has actually been excited about using it!  GENIUS!!  New Vacuum = People Using it Besides Me!  Write that one down in your book of tricks!

We had a beautiful Fall weekend and took advantage by taking a few pictures when we went to visit Carter for his 19th birthday which is coming up on Thursday!  I wanted to take a bunch of photos all over Lawrence among the beautiful trees….but energy, moods and lack of showering for some made it not the ideal time for a photoshoot.  Whitney and I literally jumped out of the van on the way to the grocery store on Sunday and took some on a side road that I’m pretty sure isn’t really supposed to be driven on but we made it work.  So, check that off the list…fall pics with pretty trees CHECK!