Coming in hot for a Summer Landing

I didn’t realize it had been so long since I had posted but as soon as the National Championship hoopla was over we got super busy with Russell’s travel soccer team, lots of early practices and travel etc. It was a fun ride, the boys won their division in the ECNL Champions League to make it to PlayOffs in San Diego. Of course you want to win every game and have every chance to advance but the boys ended with a 1-1 tie, 0-1 loss and d a 2-1 win. I was proud of Russell, I think he played hard, had fun with his teammates and was the best travel partner. We look forward to the busy high school Fall Soccer Season and will jump back into club by mid-November.

Day 1, KCSG ECNL 06 boys in San Diego after a hard fought tie 1-1 in Game 1.

Last day after 2-1 win what did the boys want to do…play more soccer at the park and on the beach.

Russell played his heart out, I’m always proud but especially on a big stage when others might be super nervous. He always says he thinks about every game the same, they are all important and the goal is to play hard and win. Next up is High School soccer so we look forward to matching up to our KCSG teammates during the Fall season.

The boy has UPS!
My sister Jessica and her boys drove 8 hours to meet up with us in San Diego! Family is good for my soul!

He’s a pretty great travel buddy! We are a good team and I have to love that he is NOT a morning person either! This boy challenges me but feeds my soul. Love you baby!

Since we didn’t make it to Thursday games we left on Wednesday to get some extra days at home, work for me and golf for Russell. He’s got the Golf bug BAD! Not such a bad thing but I’m always bugging him about eating and staying hydrated. His 16th birthday can’t come soon enough and as of today we are 12 days out. This month is insane, we are travelling pretty much every week for something or another and I have to try and get my 8 hr+ work day in on the road. Thankfully work is a stress reliever so I enjoy the distraction and process.

July 4th looked a lot different this year, the kids were scattered living their best lives. I was reminiscing on all the years past on friend’s boats, at cookouts doing fun Fam Bam time but truly was so happy my 3 were with the people they adore and enjoy. As luck would have it my bestie friend Stephanie had a light schedule too so we enjoyed her pool and talked our faces off. She’s had cancer twice and GETS all of it. She amazes me and says I amaze her which seems crazy to me. Our ying and yang of cancer is a very good fit.

I’ve been on a good clip these last few months, maybe too busy to think, took wrapped up in work and properly distracted by friends doing fun things, celebrating my birthday the entire month of June (always my favorite way to celebrate) but today was a fun screecher. I’m not sure what prompted it besides Facebook memories of time spent as a family, hard memories from the journey the last year and just feeling so super single. Not single in a dating way but SINGLE like I’m in charge of this shit show and more than half the time have no idea if I’m doing it right. I’m thankful that home feels like home. It feels warm and cozy and not sad. I think a big part of that comes from the conversation we had with Brad about his plan and we couldn’t include a medical facility that would limit visitors. I’ll never forget his face…wide eyed and like “ok if you all want me to die in this house, okay.” It was a sacred process and I wouldn’t have wanted him anywhere else than right with us. Daily reminders are all around and to be honest it can be exhausting trying to process grief.

I have partnered with a friend to help her with some software for companies that help employees through the illness, caregiving and grieving process. I typed out my timeline and notes for her on my way to California last week which was very cleansing to my mind. She’s had horrific loss in her life and we connect on a deep level with very few words. We have a knowing between us that is very cherished and hard to describe. I have terrible PTSD from the last year of Brad’s life which culminates in anxiety that raises my blood pressure to extreme levels. Today I relayed a hard story, took my blood pressure and it was 193/105. I did all I could today to try and alleviate the anxiety, think through things logically but all in all it makes me furious that a person can cause this level of biological reaction in my body. How do you resolve that when your mind is saying it is ok but your actual body is having a major response that is actually somewhat life threatening. Grief is a MOTHER FUCKER and sorry if you think that is harsh but that is the only descriptive words I have for it. I hate how memories make me spiral, I’ve worked with therapists and basically they tell me the situation is so illogical that my brain can’t solve it. So I beg and pray for Jesus to give me forgiveness and forgetfulness, he will forgive all sins including mine. I’m so thankful for my faith. If I didn’t have a Savior to throw all the bad stuff to I’m not sure how I would survive this life. I recommend the freedom of “Giving it all to him” even though today I held it way too long. It is too heavy. Grief is the strangest and worst human experience. IT IS TOO HEAVY. But God says to give it to him…so I definitely try and most of the time succeed except on weird grief days. GRIEF is forever. I wish it wasn’t.

I can step back and be thankful for my dear friends and family that have covered me the last few months. We spread ashes, we had fun, we rested, we did what we wanted on vacation without the vacation nazi making us wake up early…sorry, not sorry Brad. Our rhythm is calm, I’m thankful for that. Carter moved to his first apartment that will change in a month to the final destination. I hope I will get used to the quiet these next two years. I imagine it will be an up and down of busy and quiet when the girls get settled here full time. Maybe in two years I’ll flip the script and do something completely different with our home and life…we’ll see. I’m really not sure I can move away from my gorgeous main suite. The one thing about being a single mom that fits in my core is I can do whatever the EFF I want. Truly my kids are first, my job/responsibilities are next but what is left is WILDCARD baby!

Happy Birthday to me with some really FAB girl friends! Stephanie you are BEYONd! Single Mom BadAss, Cancer Survivor…seriously Jesus you are somethin’ to give me this gift in a real live person!

I guess what I wanted to really hit home on this post is that Grief is really hard, it is different for everyone, there needs to be a wide spectrum of acceptance, zero judgment (yep I’m having a hard time with this) and a focus on joy, health, life and blessings. I don’t do any of this well. I try very hard though. If I could wish away the bad days I 100% would. They sneak up on my like a freaking ninja. I just hang on until the sun rises the next day and I’m usually ok. Sending love and light to everyone and hanging on tight to those around me.

We are thriving

FamBam take on the Royals, the KC cold temps can’t keep us away from the K!

Hi all, I just wanted to check in. As you can imagine we enjoyed a very exciting KU Jayhawk basketball season ending the best way possible! Brad was very much missed in all the excitement but we knew he was enjoying it all from heaven. It seems so strange that he was at the Final Four in 2008 and then in heaven for the next one in 2022. I’m sure I never could have, in a million years, imagine back in 2008 when I was at home with the kids….just like I was this year…that he’d be gone. I was so sick feeling on the Monday of the championship game. I could barely eat, kept hydrating…it felt like one of the awful Mondays the weeks after he left. Almost like a reminder that he wasn’t here but I powered through my very busy day and enjoyed the game with good friends and the boys. Whitney was working at The Hawk in Lawrence among the big crowd of her friends and her boyfriend, Jagger. Good for her, she saw the game with friends and profited from the excitement.

The Lawrence Squad enjoying the Final 4 in LFK

Russell has been so busy with soccer and made the high school golf team in February PLUS got promoted to the ECNL team in our club. So…that means a lot of Sports Ubering for me. A typical day is me driving up to the golf course, 5 minutes from our house, at 2:40 to deliver his golf clothes and clubs…going back home to work…then go back to pick him up at 4:20 with his soccer stuff. We either go to the facility 20 minutes away or 2-3 times a week to the facility 40 minutes away. It is a big fat hustle but I don’t complain because my time is limited with him in the passenger seat and there will be a day when he does all that driving on his own. I’ve already lived through that with Whitney and the daily dance driving. MAYBE when I retire from being a sports uber I’ll actually be able to get myself in shape.

Speaking of that, it has been so cold in KC so I haven’t been able to get out and walk with my big girl Suzy like I would like to do. However, I have been doing really well taking care of myself, eating great food, taking vitamins and just trying to put myself back together. This includes starting an online therapy called Betterhelp.com. I’ve heard it advertised over and over daily on the podcasts I listen to. It is super convenient and affordable. Much better than the one time I went to an in-person therapist. I hope to work on all parts of me, mind, body and spirit as I develop my new normal. I still have a lot of PTSD from the weeks of hospice and some really crazy things that happened. I pray a lot for the ability to forgive and “forget” but relying on the professionals to help me. I’m very at peace with Brad’s suffering being over. It was really hard, especially hard the last year. Only Russell and I know how hard and we are enjoying the peace, the simplicity and time together. I realized that when it was Brad, me and Russell it was always the two of us in the front and Russell in the back on his phone listening to music. Now we listen to his music together which is pretty remarkable. He loves Fleetwood Mac, Red Hot Chili Peppers, Beatles and some really crazy songs that I have no idea where he found except for the ones he attributes the Guardians of the Galaxy movie. Look up “Everybody Loves the Sunshine” by Ray Ayers Ubiquity. This is the kind of stuff that is in his playlists! So funny! We decided in his previous life he was born in 1940. His latest project is hooking up Brad’s record player. I think that will be a focus this Summer when he has more time. Anyway, I’ve really enjoyed my time with him in the co-pilot position talking about music, sports, life and all sorts of things. This is a little reminder…remember to include the kids in the backseat.

MY favorite people (and dogs) on the planet

My whole year was made having all the kids plus Makenzie and Jagger here for a long weekend at Easter. Seriously how did I get this lucky? Even better, Jagger’s brother, Justice, joined us on Sunday for some furniture assembly and a steak dinner. Being a single mom now means I can make whatever I want on the holidays. I kind of like the freedom to buck the traditional stuff to make what we actually all are craving. Guess what…there is no leftover ham to throw away, everyone ate the whole meal!

Russell has been to Vegas to golf with friends, Orlando and Austin for soccer, Jacksonville for Spring Break, soccer in Wichita and St. Louis this weekend and at least one more time in June, hopefully two weekends for State Cup. We will also go to Chicago in June with Whitney and Jagger for Regionals and we are waiting to see if San Diego and Denver will make the list. I have so many trips on my bucket list but Big Russ is my priority so I’ll have to pause on the extra until we know what his teams earn. He’s riding high and having fun! He is counting the days until he turns 16 on July 17th. It will be bitter sweet for me no doubt!

Not sure if this will work on here but this is a highlight video from our soccer game in Wichita, he’s number 8 https://fb.watch/cwt5-lYWaZ/

Besides all of that we’ve been living in a construction zone. I’ll post pics another time but my bedroom and bathroom are going to be a literal oasis! Even with stuff still undone it feels like the most peaceful place on the planet. I’m so happy we have been able to shore up some unstable situations behind the walls and create a beautiful place for me…and the dogs to rest our heads.

God Bless you all, I pray your Spring and Summer is filled with adventure and good weather…..we are impatiently waiting for the warm weather to come to Kansas City!!!

Settling into 2022.

We’ve all been back to work and school for a month or so now and the routine is forming. This month has been busy with paperwork, filing claims, closing accounts or changing names. Nothing could really be done until the new year so I’m glad I wasn’t bogged down with ALL of it at once. The final disputed medical bill was cleared by insurance and paid so I have that off my plate. I was never going to pay for a test he had done routinely with his chemo treatments so it was good they conceded. Nothing makes me more mad than a denial of a test that is done at a Cancer Center…hopefully I have a reprieve from fighting over medical bills. In the end we were very well covered and two years of deductibles were paid by grants from the chemo companies so that was a welcomed blessing.

Russell is doing well in school but still playing catch up from his soccer trip to Florida with the ECNL travel team the weekend of January 21st. This kid, who told me he didn’t like to travel, has been to Vegas and now Orlando in one month! He had a great time, I’m so glad he was able to go and the families looked out for him. I already had a weekend planned with my bestie Kappa Delta sister, Justine, who was coming in from Sun Valley, ID. It was a busy fun weekend and I got a big dose of Lawrence and got to see my BIGs a few times and treated them to dinner. It was also nice to have a 2 day break from being a dog mom and getting up at sunrise with them.

Russell on the left and Cooper on the right double teaming their opponent.
So far I think Brad’s signs to me are sunflares and orbs in photos. They are always there and feel like a little wink and hug from heaven.
Besties for the Resties! Thank goodness for technology, we lost touch for the in between years but have been able to reconnect and stay in touch the last 15 years or so. Spending time with people who knew you when you were 18 is a treasure.

My sister sold us her 2007 Volvo to give to Russell and my step mom drove it to Wichita from the Bay Area, CA! We were able to get it to KC on Friday and Russell loves it. He is feeling a little less nervous about driving and having his own car here gives him incentive to practice. That is a huge box checked to that taken care of getting him a car but managing 5 vehicles is a lot!! Thankfully mine are low maintenance and under warranty so it is just the trio of old cars that require more attention. I started keeping track of it all a few years ago so I’m pretty used to managing the household/family top to bottom already.

He really is very happy just not with my picture taking to document this big moment.

Whitney has ramped back in at KU and loves her new roommates and room. I haven’t heard too many complaints about classes so hopefully those are smooth sailing this last semester at KU. She keeps herself very busy doing things with her GPhi sisters, her boyfriend, Jagger, and Sigma Nu “brothers.” Carter is there every weekend so he still gets to hang out with her at times when their paths cross. He is working towards completing his training program at TQL to become a freight broker. He’s landed some great accounts and is doing well. He got kudos from his boss recently and likes to come home and tell me his war stories. Besides being tired from the early alarms it is all going very well. He and his friends went to the epic playoff game against the Buffalo Bills when we drove the ball for a touchdown in 13 seconds. I’m so glad he saw that game live, it was amazing!

Jagger and Whitney at their 80s workout theme party.
Carter and his high school buddies at the Epic Chiefs game.

We are anxiously awaiting our final travel plans for soccer and have Spring Break booked for Jacksonville, FL. It will be really nice to have a relaxing trip and break from work. Carter and his girlfriend, Makenzie, are joining me and Russell mid-week. Whitney will be in Padre with her friends for Spring Break. She missed a friend trip to Austin last semester because of Rock Chalk Revue (a fundraiser with musicals that compete against other fraternity/sorority teams) so she’s excited to be in the action this time. Her group didn’t make it in the show so I think she’s realizing how much work it was first semester and enjoying more free time. Padre will be a great opportunity to make some memories with her KU friends. Thankfully Jagger and friends are going so they’ll keep her safe and watched over.

So I guess we have life planned through Spring Break so far. I have my own travel bucket list and unfortunately the only road block tends to be days off from work and schedule alignment. Some of my wish list places will have to happen in 2023 but I will definitely be spending my PTO very well the next few years. I’m also purging closets and drawers that have been ignored for many years. Definitely #bradapproved when corners and piles get cleared out. Russell didn’t have his car a whole day and was asking about parking in the 3rd spot in the garage. Hopefully we can make that happen for him. I think he’s talked about that 3rd spot for at least 5 years! Always picturing what it would be like to be the only kid at home…well that didn’t last very long haha! It will be a full house in May again until Carter gets his move out plan in place. Of course I love it and will count my blessings whenever all 3 kids are home. It is my favorite!!

I’m about to kick off a Master bedroom and bathroom update. Brad and I had met with our favorite contractor in September and while Brad didn’t want to hear about the financial details he was happy I was getting it done. I’m getting super excited to get it going and hope the updates will freshen up our space and feel a little brighter and fresher. I’m sure I’ll have before, during and after pics to share.

January was also busy watching KU and the Chiefs! Since the Chiefs didn’t make it back to the SuperBowl I have my Sundays back and much less stress! What a fun ride this year! Next up will be March Madness watching our Jayhawks and Gamma Phi Beta Mom’s weekend. Quiet weekends at home have been nice and relaxing but I definitely love having something fun on the calendar to look forward to. Russell has kept buys playing rec basketball, soccer scrimmages and practices or hanging out with his friends. Quiet weekends also give me extra time to sort through Brad’s things that we don’t need. My friends have been a big help with some of that, I’m so blessed to have them. Somedays I feel accomplished doing it and other days I just can’t make another decision. I haven’t turned off Brad’s phone yet. There is a lot to still go through on it and make sure I’m not losing information or photos. Whitney likes to text him so I don’t want her to lose that comfort just yet. We have barely scratched the surface of recovery but I think we are all facing it head on and trying not to push it down to resurface later. The waves still come, songs are a big trigger for me. I felt Brad very near while in Lawrence. Justine and I talked about the good ole days and rehashed date parties we went to and some fun KU memories. I think I could easily move to Lawrence and be 100% blissfully happy there. I love everything about it. Who knows maybe that is in my future. The kids always joke that I’ll be a house mom someday. I just might. For now we will Rock Chalk our way through the rest of Winter.

What a weekend! 2 great KU games and an unbelievable Chiefs game. Phew it was a lot of work to be a fan!

Thank you Jesus for dogs! These angels have gotten me through every single day.

They give me all their love sun up to sun down.
And save a little for the boys.

And here we are, a year later and our hero is gone

I had switched to MealTrain for updates so people weren’t looking in multiple places and for those not on Facebook to have a place to subscribe to the latest on how Brad and our family were doing.

I feel called to share our journey and perspective because what I’ve realized is that young people dying with a hospice situation is 100% different than an elderly person. Beginning to End, Top to Bottom TOTALLY different. I feel like if I can share my knowledge and journey I can help others prepare and navigate.

Brad left us on Thanksgiving at 4:30pm after our precisely planned and executed dinner. We knew he was waiting for something and he always was annoyed by the cleaning up process so while the kitchen was loud with laughter and clanking of dishes he and I shared his last moment of breath. I was dumbfounded…I smiled and said to him “you chose me?!” We had waited for 15 hours…the last phase that usually lasts minutes or maybe a few hours lasted 15 hours! It was sad and exhausting and terrible. We all took turns sitting with him and talking to him. I remember sitting with Carter and Makenzie and saying to them and to Brad that “this can’t go one for days” I begged him to stop it, he needed to go. His body was grasping for air and hanging on for an agonizing long time. Selfishly I wanted him to go and stop the suffering he had endured his last year. I knew he wanted to stay for every last ounce of life with us.

So in that last moment it was beautiful, heartbreaking and heartwarming. My sweet husband, who I met when I was 18 chose ME to be in that moment and silently summoned me. We were so connected all day, I felt like I was in a trance. My brain didn’t work, I didn’t feel my body, I was moving through the day doing what I could to make things feel better for others and for him. Saying everything I could so that he felt like things had been completed. Forgiving for anything and everything, promising that we could do this for him. We played music and were all around, we stopped the music and gave him quiet but he still hung on. Then…he gave me 3 quick breaths and one long one. I have a little box in my brain to remember that moment but try not to relive it often. Was he trying to speak? Were the breaths an attempt at I love you? 3 quick breaths for the kids and one big one for me? Or was it all brain activity impulses meaning nothing? You all know me…I’ll spin it into something wonderful and those 3 breaths were different and intentional so I know he was reaching out.

So Christmas was a month exactly. Heartbreaking to some degree but we just sat in the day and did our best. We did the things he had planned, we rested, ate good food and leaned into each other. It was a quick trip for my inlaws as they had all been to our house for a long time and multiple times in the last few months.

I have been paralyzed by feelings and numbness and can finally feel like I can work. Between the two weeks of preparation for his service and then two week to prep for Christmas I felt like I could barely breath. I had days of paralyzing grief where I could barely even function, eat, exist. I was pretty much nauseous for a month except for the service day, I felt amazing and strong that day. All the forces of heaven carrying me through. Today I feel better, still can’t eat much but try so that I can keep sustained and have the energy I need to move through to another side.

What I will say for anyone in this position, the after feels like nothing you could imagine. The relief was a cushion at first, the relief that the mean things, the constant instructions, the questioning of my smallest decisions, the them vs us dynamic, the fight between him working and talking to me and the kids in his last weeks…all of that ugly and hurtful shit faded in an instant. The relief wore off and I was left with such sadness that my best friend of 32 years was gone. The guy that always planned the fun or brought the fun to ordinary days. The guy that pushed me forward even if it was challenging me to do better. I know in the end he was proud of me, appreciated all that I was doing and knew we had worked hard to get as much ready and organized as we could.

Here is a link to a video collage Whitney put together that makes me laugh and cry but remember MY BRAD the way he really was.

https://drive.google.com/file/d/1yQ5HvHwrQN4XYf5zFkL1OG7g-QwDGF_A/view?usp=sharing

Here is the link to the service. https://livestream.com/accounts/3200605/events/9975031/videos/227976586?t=1639230516992&fbclid=IwAR28vaYaiPW0JJhTri048YaU57M_kQkj4n8JN0PtlELEli5MhWxl-A1BdTE

I’ve watched it about 5 times just to connect my brain and heart and the reality of pulling off such a wonderful day for Brad. I would build strength then it would drain out of me. Saying goodbye to all of our friends was so hard…they’ve stayed connected and reach out just when I start to feel alone. The thought of “widow” and “single mom” is too much so I just don’t go there. I’m a Mom of 3 kids and Dog Mom of 2 busy dogs plus a full time hustler as a Senior Recruiter. That is where I’m leaning into as my currently defined purpose. Care for my people and get people jobs. My two responsibilities for now.

God Bless you all, thank you for your prayers. I’ll be using this blog to update my experiences and share what I can to help.

Chemo Repeat and Research for next steps

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.

3 ceremonies cancelled…we make the best of it and celebrated and took pictures on campus with all the other graduates without rules and distancing, it was great! We spent the weekend getting to know Carter’s super darling girlfriend, Mackenzie. They are such a great match and she was a joy to have around.

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 having a backyard bask “Sunday Funday” at our house. Can’t wait!

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

Win or Lose we just really love watching Russell play soccer!

Happy New Year! Let’s make 2021 great…but first a hospital stay and tune up.

**our friends set up this meal train. It has been an easy way for me to update people and you can receive emails when I post anything new. https://mealtrain.com/g475e8 I’ve been posting more on Facebook but Brad doesn’t like all the attention.**

I’ve been meaning to get on here to send out some updates but things have just been so dang busy! We had a great Christmas with Brad’s family and had our neighbors over for New Year’s Eve which was great to catch up with everyone. Brad’s sister’s family had a ski trip planned but our nephew Blake ended up with a broken arm that had been hurting since he arrived in KC. Our Children’s hospital was great and got him in a cast in a matter of hours. Since he was unable to ski we convinced Paula to leave him with us while she met up with her fiance’ and friends in Colorado. Russell and Blake loved having some extra time to hang out. Paula came back to fly home with him so we had lots of family fun over the holidays!

On Monday the 4th we kicked off our week with a Thoracentesis, lung drain, and while Brad was there I was fighting to get his oral chemo as there was a glitch and we hadn’t received it yet. He was supposed to take it Monday morning so I was urgently trying to locate it so he wasn’t thrown off his schedule. It is very specific dosing with 5 days on, 2 days off and then two weeks off. Thankfully KU Med is very good about pushing past approval and financial obstacles so they made it happen and I picked it up right before picking Brad up from the procedure. Here is a God Wink #1 in this whole situation. We try to make chemo be the first thing that is billed in the new year because they have grants that will pay for our deductible. I worked with the financial dept to push through the chemo so it would all bill correctly. If the drain was billed first we’d have to pay 100% of the deductible. There is more to that piece I will come back to it.

I had given Brad some calming tea and CBD and had high hopes of his blood pressure to hold but when he texted me after he said it was awful, the most painful procedure and his BP was 45/24 at first then 65/45 during the whole procedure. I picked him up and he did not look good at all and was in pain. He rested while I ran some errands with Russell, when we got home he and Whitney said he had been confused and wasn’t tracking on conversations. At bedtime he was in a lot of pain in his back and chest but a pain pill helped him sleep. The next day I had planned to go to my office but he just did not seem 100% so I worked from home. By mid-day he wanted me to call the cancer clinic and see if they could see him. We went in at 1:30 to talk with Dr. Chuda and thankfully they let me attend. It was a short appt, he opened up his xray from the day before and said he lung had been punctured and collapsed. We were shocked because Brad was not in extreme distress. I think he’s gotten so used to one lung being compromised so it didn’t stand out as a big difference except for the pain.

We were sent to the downtown hospital for Xrays and likely admittance. We waited for an hour to get into the ER and tried to stay away from the other sick people to avoid germs. They put in a chest tube which was extremely painful! Eventually he got moved to a room which was in the overflow section and very sketchy accommodations but the nurses were absolutely incredible. They fought for him to get answers and were very smart with information they shared with us.

We laughed at first about this contraption and how cutting edge it must have been when it was installed, that quickly turned to desperation to get him away from the toilet 3 feet from his bed.

I utilized patient advocacy to help push the doctors to see him and help us find out the plan. Finally at 3pm we had a literal parade of specialists coming in one by one to tell us their piece of the situation and what they will be doing. At the time we were desperately pushing for him to get his chemo drugs approved. We had them, they were sitting on the counter but the pharmacy had to verify them before they’d allow him to take them. That was so frustrating after I had push so hard to get them approved and through the system on Monday! The cardiothoracic surgeon, Dr. V, was amazing and so positive! He brought us an article to read about a procedure he wanted to do that involved putting mesh on his diaphragm to help block the fluid from going into his lung. It would still go in his abdomen but that was a much easier process on him to get drained than these lung drains. We were so happy to have been seen by everyone, ended up getting the chemo approved and were feeling so accomplished!

I went home to be with Whitney and Russell and get some items Brad had requested and attempted a good night’s sleep. I woke up to a very disappointing text from Brad that said he had infection in his lung fluid and the surgery was cancelled. His liver doctor came by and said she was against the surgery now or EVER and didn’t want anything foreign in his body because there would be a very high risk of infection if he had the mesh or a permanent drain inserted. Disappointment turned to worry as we needed that infection to be cleared. My level of urgency to get him in a new room was elevated and escalated with Patient Advocacy. My husband with infection flowing through is body did not need to be in that grungy room 3 feet from a disgusting toilet! By bedtime he was moved to the cardiac floor which is quiet, clean and there is a well equipped real bathroom.

On Friday we had follow ups but nothing new. It was a relaxed day settling into his new room with the new rhythm of the staff. We knew the weekend would be quiet but hoped he would get the chest tube out before Monday. There is a massive volume of fluid coming out because there is no resistance to the fluid’s path. It had to work hard to find the easier path into his lung and now that it can just drain out the liver and kidneys are not taxed with backed up fluid and resistance. His labs are showing that his organs are less stressed as they’ve all come down from a peak on the 5th due to infection and stress.

I had some friends come by on Friday evening to drink some wine and catch up. It was so nice to laugh and share stories with my girls. I think it was good for Whitney to let lose a little as well. Russell went to his soccer friend’s house for the night and enjoyed a steak dinner and a workout with his buddy. It has inspired him to set up the weight bench in our basement and work on strength training. This kid is growing up so fast this year, mentally, physically and maturing in how he attacks his goals.

On Saturday I spent the day with Brad and we treated ourselves with a yummy meal from a local asian restaurant. The hospital has some amazing restaurant within walking distance so that is nice change of pace from hospital food. He was pretty tired and I had plans to go to dinner and the Heart of America Youth Ballet with our dance friends. It was an absolutely wonderful night and break from the grind of the hospital stress. The ballet was Sleeping Beauty and was wonderfully choreographed and performed. I loved watching Whitney and her friends enjoy the show from the audience for the first time.

Sleeping Beauty, performed by Heart of America Youth Ballet
Rite of Passage, these ladies came to support their beloved HAYB and cheer for the younger dancers performing. We had so much fun and were able to catch up with friends before and after the show.

On Sunday Whitney had planned to hang out with Brad while I took Russell to his soccer game in the morning and had some cleaning and food prep to do for the week. I was so exhausted I didn’t get everything done but did enjoy a lettering class by one of my favorite ladies, Gale Nation. She has been a crafty friend for a long time and I’ve been wanting to take a class from her for a long time. The plan was for Whitney to take the class with me but it was a good time for her to go hang with her dad. He requested her to bring dominos and candy. I loaded up a bag of snacks, banana bread from a friend and sent $50 that was given to us for a good lunch. They had a good day and I got some much needed rest.

Late last night a nurse said something about surgery today to separate his organs. We were like “WHAT SURGERY?”!!! I told Brad just relax, she was probably reading about the mesh surgery and got confused. This morning the doctors confirmed, no surgery and want to keep the fluid draining and monitor how the diuretics affect the fluid if at all. It is looking like the chest tube will come out tomorrow and we will work to get him released. With his lab numbers looking really good we hope all meds will be tweaked and a schedule for fluid drains will be established. While it is a hassle and his blood pressure drops “Vagal Response” are scary and uncomfortable we will try to manage our way through them. Anything is better than being in the hospital so we will just have to power through and accept this as the best option.

Please pray for Brad to continue to *heal, *maintain a positive attitude, *enjoy the good in his days and for all of us to *keep our stress level low, our *hope high and remain *strong in our faith that God is holding us close and carrying out his plan for all of us. We are juggling work, school and activities along with these medical appts and situations. I’m sure we will continue to grow in strength as a Family and in our Faith.

God Bless, thank you for your prayers! Kim and the FamBam

New Chemo and Relief

Quick update, Brad was approved for and started Lonsurf which is a chemo pill, well multiple pills but he will have the flexibility to take them at home and not have to sit in the Cancer Clinic multiple days during chemo week. He’s had issues with his Blood Pressure dropping and the latest drop was 42/24 during his most recent “lung drain.” He thinks it is mental so he’s trying to work on relaxation and trying not to let the needle phobia affect him. We have the next one set for Thursday 12/10 which is 6 days from the most recent one. We are trying to stretch out the time between drains and so far it is going well.

Family trip the The Plaza for happy hour and shopping

Brad had so much more energy these past two weeks and was able to get some honey do projects done. We hosted a big Christmas treat and crepe making party for my family. It was a loud, busy and fun day! We had mimosas and appetizers while we worked and celebrated with a Mexican freast and margaritas for dinner. Somehow we lucked out and got to keep a lot of the goods!! Our neighbors and friends will be the happy beneficiaries of all of our goodies.

Girl Gang: my sister Marci, cousin Jacque, Aunt T, my Mom, me and Whitney…so glad we could gather and have fun!

So far Brad doesn’t seem to be affected by the chemo drug but it is hard to tell until he’s had a few doses. Thankfully they gave him good nausea drugs and their goal is to keep him from feeling bad. His CEA is at 8.2 which has slowly creeped up since October, we are hopeful that comes down with a positive reaction to this brand of chemo.

Prayer requests: please pray that his fluid stays under control with the goal of not accumulating at all. We need this chemo to work on his active cancer, he needs to gain weight so he can fight through the days he doesn’t feel well or doesn’t have an appetite.

Please pray for our kids, it is so hard for them to focus on school and it stresses me out big time! I’m trying to stay focused on work so I totally empathize with them but schools and future employers don’t give any hall passes just because your dad is fighting cancer…good grades are a must in this competitive world! This is my prayer over and over for them to find their focus, motivation and clear minds. We trust God’s plan, I know he is actively working in our lives and guiding us through this journey. Some days I wonder if we can power through the hours and other days I KNOW we can. I find great comfort in Isaiah scripture these days. I definitely need God’s Firm Grip!

More fun picture from our treat and crepe day.

Thank you for your continued prayers and support. We feel it on the best and worst days.

Love the Woods

Heat of the Battle

Hi everyone, if you don’t follow us on Facebook I’ll update this blog with our battle scars from the last few weeks. We were dealing with the fluid build up by scheduling twice a week thoracentesis “lung drain.” That didn’t feel like the best option and was honestly exhausting for all of us but mostly Brad. It was a lot to manage along with the chemo schedule biweekly. On Friday, November 13th we were waiting for my Brother and family to arrive for an early Thanksgiving and weekend fun watching Russell play soccer in a tournament. Brad’s parents took him to the IR clinic for the “lung drain” and on the way home he was coughing uncontrollably and spitting up the yellow fluid that is normally in the drain bottle. Brad was texting me telling me what was going on and I was calling every nurse line and possible live person to get them to answer on a Friday afternoon.

Brad walked in the door and did not look good so we jumped in the car with his dad driving and drove straight to the closest ER at Truman Lakewood. His oxygen saturation was in the 70% range and his BP was very low. After what felt like an hour on hold I got through to a nurse who said to take him to the ER and suggested an ambulance but we were so close it was faster to just go right then. Those ER people were freaking rockstars! He was in a bed in less than 2 minutes from walking in the door and hooked up to high dose oxygen helping him recover from these coughing spells. It was TERRIFYING! I felt like I was watching him drown before me and he felt the same. Fast forward to 10pm that night, they transferred him to KU Med ICU that night. The first xrays looked like he had pneumonia but the KU Med people put together that the IR department took out too much fluid and it created a vacuum that pulled the fluid into his lung. Of course this is a rare occurrence and one of his nurses had never seen it in 15 years. We didn’t care about all of that once he was diagnosed correctly and they used a special mask to push the fluid back out of his lung.

The next day Brad fought hard to get released so he could make Russell’s soccer game and our family Thanksgiving meal. He organized the menu and prepared the turkey, made sure all ingredients were purchased and edited my list of assembly and cook times…sadly his parents and Whitney ended up pulling off the amazing spread. The next day I went to the hospital to hopefully break him out and our urging moved things along so that he could make the 2nd half of Russell’s game on Sunday. In this wicked battle we find ourselves thankful for things like 30 minutes of a soccer game despite missing the previous two games on Saturday. That day it felt like a freaking miracle!

The best 30 minutes of our weekend! Brad made it to soccer straight from KU Med!
Nothing like a belly laugh after a scary and frustrating weekend!

Between Sunday, November 13th and Wednesday, November 25th we tried to cover every base, make every plan and cover every scenario so that we could still go on our trip to Brad’s sister’s new house in Seabrook, TX. It was pretty dicey coming down to a signature by his doctor on the last day at 3pm. The trip was worth the stress, we got in some fun, relaxation and fun family time together. We did a little shopping and site seeing but mostly stuffed our faces with delicacies from the Gulf. On our way home Brad had a hard time keeping his blood pressure stable. His oxygen helped but it was very scary for him and us to make sure we got down with him in one piece.

This week we have appointments daily with the IR lung drain starting at 8am on Monday, December 1 and oncologist appointment at 11am. We expect to discuss a new chemo pill treatment and further discuss the lung fluid situation and how we can best manage it. The increased diuretics has helped a lot but then we worry about dehydration. This thing is like “whack-a-mole” one thing gets better and something else pops up. But we just keep going, what else are we going to do but fight and figure out the best ways to deal with the almost weekly changed symptoms.

I also wanted to mention while Brad was laying in the ER on 11/13 he “outed” himself on Facebook and let everyone know he was in this fight. While he is still reluctant to share too much he does really enjoy the comments, prayers, encouragements and most of all stories from “back in the day” and notes. I’m posting our mailing address here: 5929 Ne Hidden Valley Drive, Lees Summit, MO 64064. He reads every single card and note we receive. I brings him strength, comfort and entertainment. Our soccer parents also created this meal train to help us with meals and expenses. https://mealtrain.com/g475e8 With all of this crazy our work is suffering, we are doing ok, we are stable but hospitalizations wreak havoc on our normal lives and I’ve felt like I’m running in quicksand trying to keep up. Thankfully the natural slow down of the holidays will help us right side our personal and professional lives so we are ready to go in 2021. I have faith this is just a little speed bump…Brad has been through many of these downturns and comes back fighting harder than ever.

Thank you as always for your prayers, we count God’s blessings and hope you are counting yours as well. For now we are focused on clear minds for work and school and learning how we can best navigate this newer version of Brad’s treatment plan.

God Bless, Kim

Quick Catch Up

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.

Carter, a few of his fraternity brothers, Russell and Brad.
I love this boy, he healed our broken hearts and keeps us on our toes. I pray for him daily and trust God’s path for him as he graduates this year.
Soaking up all the time we can get with the Banes before they head west to Cali.

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!

Ready, Set, Go! School Year 2020-2021

This is definitely NOT how Russell feels about his brother and sister leaving.

I remember feeling like we were stuck in time back in March when everything was shutting down and getting cancelled.  Now I’m like “WAIT where did our Summer go?”  I know Brad really appreciated all of the extra family time but as with anything it started to feel like too much.  Not because we don’t love our kids but when you have young adults at home who don’t really want to help vacuum or unload the dishwasher for the 1487th time it creates conflict.  I enjoyed cooking for everyone and got to experiment a lot, especially Vegan recipes for Whitney.  I have always cooked in a deconstructed way so I have a low carb option and the boys had high carb/protein/fat option (all the things.) This has turned into a no meat/dairy option with the proteins on the side for me and Whit.  Russell has been super helpful and when I begged Whitney she would trade chores for me buying her necessities.  Carter really likes going to the gym and will not change any sort of plan if it got in the way of his plan for the gym.  I find myself thinking a lot about how the Big kids will have a big fat reality check when it is time for them to take care of their own home.  I guess that is just life and someday they’ll understand. We’ll revisit the *sharing of the chores* when they come home over Thanksgiving-February break.

We said our goodbyes, Carter in the driveway which is what he prefers and Whitney’s has been going on for a month.  Her grad parties morphed into goodbye parties with a few teary hugs in the driveway just before she took off for Lawrence after her busy day of recruitment on Thursday.  The Big kids are settled in Lawrence for the school year and we are enjoying a quiet house, less dishes and trash with more time to clean out the pantry, fridge and cabinets for an upcoming Kitchen spruce up.  Whitney is figuring out how to more easily eat vegan without the comforts of home and learning in college it takes some effort to eat well.  We’ve hardly heard from Carter but he’s ready to go back to his job and be more busy.  The fraternity had some positive Covid cases, including Carter so they have been laying low and quarantining in the fraternity. Several houses have been quarantined and we hope dealing with this early will help the year run more smoothly. Whitney is loving her waitress job, especially the tips for quick cashflow! We are proud of both of them for soldiering on.

Aubree and Whitney on Pref Day!
A teary but happy goodbye
Whitney and Lindsay both pledged Gamma Phi Beta! It seems like a great fit!
Lindsay and Whitney in their beautiful dorm room.

Russell started high school on 9/8/2020. He was nervous but had a great first day so all of the nerves settled. He’s been playing hard for his JV Soccer Team and we are so thankful for a progressive district that has given us the choice to be in-person or virtual. We feel really good about the choice to send him to school! He’s happy, he’s learning and isn’t having the tech glitches some of the virtual students are dealing with. We are hopeful, positive and looking to the future!

As for Brad, we are waiting for insurance to approve the new chemo plan. I can’t express the rage I feel about this…I don’t understand why we have to wait on insurance to approve what a skilled specialist is prescribing. Meanwhile he feels more and more “cancery” and no doubt his numbers are rising. He rests in bed and in his recliner as much as possible and has been doing his honey dos around the house fixing my new Keurig, Whitney’s brakes, the front glass door and all of the other annoying things that pop up. He’s been working when he can but the pace is definitely not the same crazy level as the last few months. I’m so proud of him for working so hard and taking advantage of low rates to bring in some extra money these last 6 months. Brad needs lots of prayers for strength: mind, body and spirit. This battle is weighing him down as we approach the start of year 3 on 9/14/2020. He turns 50 on Friday, 9/11/2020 which is a huge milestone but doesn’t seem to be as exciting with him not feeling good. We pray the chemo and immunotherapy will fight for him and give him more energy and time in his day to feel some sense of normal. His major battles are gaining weight, a weak liver and the growing cancer. It is a conscious battle to eat, watch his salt and not succumb to the urge to lay around and rest. Cancer sucks. It feels like a slow burn, always there, sometimes the burn rages and we struggle to contain it…right now is that time for him. It is strange, the last two years this is when he felt the worst, dx in 2018, liver struggles in 2019 and this year the rising numbers and low weight are the biggest battles. Forget Covid! Seriously…that is the least of our worries. I won’t go political here, it isn’t worth it but we are ready for the choice of normalcy and decide how we want to protect ourselves. Brad is so adamant about the fact that he doesn’t expect society to keep him safe from covid. It is his job to avoid situations, wear a mask and wash his hands. Healthy people need to work and go to school and enjoy life again. That is all I’m going to say about that.

Thank you for your continued prayers. We are hanging in there and excited to celebrate Brad and Whitney’s birthdays together this weekend. We are so blessed and God is working in our lives, the kids are happy and healthy, we have everything we need. God is GOOD all of the time.