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!

Who would have thought a pandemic would be the ultimate gift?

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RCD tryouts, LET’S GOOOOOO! #RCJH

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our beautiful senior with so much good stuff on the horizon

Hi everyone! I’ve thought about updating but honestly our life the last 7 months has felt very normal so I just kind of skirted the idea of updating a blog that deals with cancer. The treatment Brad has been on has helped him feel the most normal since diagnosed. I say that but I’m not him and I know he battles tiredness, low appetite and doesn’t complain as much as he could have.

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living the comfy clothes life

We’ve had a great “coasting” feeling for several months but with recent test results his numbers are starting to show some instability so on April 28th Brad will add Irinotecan chemo to his Vectibix immunotherapy treatment. New treatments always bring anxiety because we have a huge unknown of new symptoms and this one is supposed to have some pretty bad GI issues that are untouched by over the counter meds. The other tricky part is I have only been able to attend appts by speaker phone due to Covid 19 quarantine so that is a challenge considering I’ve gone to 99.% of his appointments. We are making it work.

The ying and yang of this Covid situation is almost unfathomable! The gift of time with our family all together is unmeasurable. We normally would only have this if Brad was in a dire situation. To have everyone at home, healthy and thriving and working through this crazy situation together is a gift that no one would normally have. The moods pop up when there is frustration but for the most part we have all been in check, patient and positive. We’ve missed A LOT! We are sad for our kids but thankful everyone is home, we have 3 floors to retreat to and have food to eat, (don’t get me started on the ridiculousness of toilet paper) and all that we need.  I LOVE COOKING so that has been a terrific outlet for me to love on my family through good, healthy and fresh food.  I’ve been experimenting with vegan recipes for Whitney and gave up dairy and red meat to see if I felt better and I do.  It is hard, cheese is awesome! BUT I feel like a lighter version of myself and enjoy making yummy, healthy food for me and Whitney then the usual action packed food for the boys.

So as our city just imposed 3 more weeks we hunker down, reassess how we can do better in these circumstances and move on.  We are beyond thankful for our jobs to remain stable, our finances are stable if not better for all of the hotel stays we cancelled due to events and games getting cancelled.  I’m holding on tight to Whitney’s grad party and senior trip, if we can do it all safely we will FREAKING DO IT!  I’ve dubbed myself Positive Polly because I refused to get sucked into the long term cancellation of life as we know it and as unpopular as it sounds I’m dumbfounded at the local devastation on our economy for not even 2000 local cases.  I get it…I get that we’ve done a good job so far but my GOD we are NOT New York and we need to get back to work asap.  We comply but the financial devastation has to be addressed and thoughtfully tended to.  WE ARE NOT NEW YORK.

The prayer list is long…I’ll list it below.
– For Brad to gain weight so he can handle the brunt of chemo with no margin of extra weight to lose. He eats like Buddy the Elf…candy and sweets, the good stuff is a negotiation so I need him to bulk up.
– For Brad to not have the severity of GI issues expected and have the strength of mind to do the things needed to combat the issues.
– For our Whitney, for her to be her best self during Rock Chalk Dance Tryouts! The virtual format is hard but we have no doubt she will give it her very best. We pray she keeps her motivation strong to move her body, stay strong physically despite the closed in nature of this quarantine.
-We pray she can finish strong with her classes and achieve her goal of 4.8 gpa and all As in her dual credit college classes.

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– For Carter, he’s missing his friends and college life. He found out he will be able to graduate next May and to him it feels like he’s getting robbed rather than an accomplishment. We pray the shift can come where he will appreciate the fact that he will be done early and not have to be burdened with more school debt and will find a great career path and young grown up life! I don’t know about you all but Brad and I had a great time in Kansas City living the good life as 20-somethings.
– We pray for Carter to be successful in his grades this semester as it is a critical time with only 3 semesters left including this one.

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– Our Russell. He has thrived during this time and is living his best life! He had a bad stretch of getting teased at school for being small and wished everyday to be homeschooled. We’ve seen him grow into a more happy child, with a more positive outlook and loving this format. If it wasn’t for the high school sports opportunities we would consider homeschooling him and just playing club soccer.  We know that he needs to branch out and grow personally through stepping out of his comfort zone. BUT you’ve never seen a happier 13 years old. We are mourning the loss of a tremendous soccer season and missing our soccer families but they do a good job of staying in touch. They have homework weekly and get props from the social media posts.
– As for me, I just keep doing my thing and am trying to adjust to the plans we had and make new plans for our girl to celebrate her properly. Her party is set for Saturday, May 23rd and with the new stay-at-home order lifting May 15th we hope her party will just be the best EPIC gathering allowed after the lift. I appreciate her attitude but do wonder how that girl can stay in her 12 x 12 room for days on end. I guess it is practice for dorm room life.

Thank you for all who read this. Leave a comment if you’d like so I know I’m not talking to myself. I should update more often but in a way I was thinking it felt like a jinx with such a good schedule we were on.

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Recent dinner and gift drop off to my sister Jessica, she has baby boy #2 on 4/20!

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Led a Birthday parade for my awesome Sister in Law Rachael who is leading the quality efforts at our local Childrens Mercy Hospital. Can’t wait to gather and celebrate in person but the car parades are pretty fun!

 

Short Fuses and Winning–Ying and Yang

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!

 

 

I love March!

It is LUCKY red boot season! These are the “new” red boots I spied on Bella Patina’s facebook page. The vendor was very close to my space so I grabbed those suckers up as soon as I got there! I love them! And so far they are indeed LUCKY!

Lucky Red Boots 2.0
Lucky Red Boots 2.0

Aunt Suzi, Uncle Nick and Cameron came to visit while they cheered on their beloved Pikeville Bears and other neighboring schools in the NAIA.  We loved having them again and hope their tournament will come through KC many more years to come!

The boys played basketball at the Big 12 tournament as many days as they could fit it in.
The boys played basketball at the Big 12 tournament as many days as they could fit it in.

March Madness is definitely one of the big events I look forward to each year!  I love green so decorating for St. Pats is super fun as well.  I’m just so sad I have to put most of it away…bummer.  Here is my cute little springy festive table complete with a very old framed photo of a newspaper clipping. I found this at a thrift store for like $2 and it reminded me of simple times when framing a newpaper photo was the best option.

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It wouldn’t be March without the Leprechaun trap.  We didn’t catch a little dude again this year but we will keep trying!  Of course the KU scentsy is a blazin’!

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Leprachaun trap

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I whipped up this cute wreath with scraps, a discarded wreath ring at a thrift store and found items in my scrap collection to jazz up the flowers.

I’m hoping the rest of March is lucky for our little family and yours!

Cheers to green milk!
Cheers to green milk!

FINAL FOUR BABY!

Well look here…the UNIVERSITY OF KANSAS JAYHAWKS made it to the Final Four!  What an awesome surprise!  Even though my husband said we could do it I didn’t expect it and don’t think many of the Jayhawk faithful did either. We are beyond excited and are in the good position of being happy with a successful season and hoping we go all the way at the same time!  I love being a Jayhawk, it is so fun this time of year!

When KU is in the late stages of the NCAA tournament the rest of our lives are a blur.  St. Patrick’s Day is one of my favorite hoildays but it went by almost un-celebrated.  Easter is coming up and I still have remnants from St. Pattys so I need to get my cottontail in gear and get out the Easter decor!

As a KU fan I have a few traditions…like most KU fans we are superstitious about our gameday routine, clothing etc.  If we’ve watched our team win in the same seat at the same house or bar throughout the season we do everything to replicate that routine again and again until we lose.  A constant for me is my RED BOOTS!

My Lucky Red Boots in action at a KU football game

I got these boots about 11 years ago right before I turned 30.  I was pregnant with Whitney Jane and thought, “if I can’t have a cocktail to celebrate turning 30 by golly I’ll wear red boots!”  I wear them as often as I can when KU is playing and they are probably 98% a sure thing to get us a WIN.  They’ve watched KU lose to Arizona and Texas at home but that’s ok, that is part of being a fan.  And the loss against…Texas was the fateful day last year when T.Rob lost his mom.  That one doesn’t count, the team stayed up all night comforting their friend and brother.

anyway…I probably have enough KU shirts to wear one every day for an entire month but I definitely have favorites.  MY tradition, despite Brad not being too excited about it, is buying myself and the kids a new KU shirt during the NCAA tournament.  Usually we’ve worn our shirts so many times our options are running low if the laundry isn’t done.  So I get to be the hero and make the kids happy (and myself) with a new Jayhawk shirt (two)!  So here is my dilemma for this coming Saturday when we play Ohio State for the chance to go to the championship game…I have a new KU shirt and a new *super* cute KU dress.  Do I break one of them now without being battle tested?  Do I go with the fact that Red Boots plus new fan gear cancel out any danger of causing a loss?  Big dilemma!  That will have to be a game time decision.  I can also rely on my sure fire routine for this year– if we are sucking I will be watching in my room…like I have the past 3 games during a close 2nd half.  Since Jessica is coming over and said she might have to leave if we are losing might mean we end up watching together in my dark lonely bedroom.  As long as we “Survive and Advance” I don’t care where I watch the game!

ROCK CHALK BABY!  

Let’s do this thing!

March Madness – ROCK CHALK JAYHAWK

Far above the golden valley
Glorious to view,
Stands our noble Alma Mater,
Towering towards the blue.
Lift the chorus ever onward,
Crimson and the Blue
Hail to thee our Alma Mater
Hail to old KU.
Far above the distant humming
of the busy town,
Reared against the dome of heaven
Looks she proudly down
Greet we then our foster mother,
Noble friend so true,
We will ever sing her praises
Hail to old KU

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I’ll be heading to St. Louis with my little dancer and minja but will be rooting for the Jayhawks throughout the tournament!  I hope two things…1)we don’t play MU again, my heart can’t take it 2)we win the tournament so that the “nay-sayers” will shut it.

I love March, so glad we’ll wake up from our tournament haze to April and the onset of Spring.  Mother Nature has been kind but we are waiting for the other shoe to drop…probably in the form of wind, rain and tornados.

CHEERS and ROCK CHALK JAYHAWK GO KU!

That’s right T.Rob!

Rock Chalk Baby!

Countdown to March Madness!

In our family our two favorite times of the year are #1 March because we LOVE St. Patrick’s Day and the NCAA tournament and #2 Cinco De Mayo because we are Mexican food nuts and Brad’s family is from Kentucky so we love watching the Kentucky Derby.

A few years ago I made a Leprechaun trap

Russell checking out the Leprechaun trap

The big kids were intrigued the first year we had it out on St. Patrick’s Day but as hard as we tried we never caught that pesky leprechaun. He turned our toilet water green, the milk in the fridge green…even Russell’s special mommy milk when he was a baby! They weren’t so sure about drinking green milk and were scared to use the toilet. We’ve found cookie crisp cereal to be a favorite treat for leprechauns who visit our house.

So this year I came home to find Brad and Russell in a deep discussion about leprechauns. Brad got out the trap and talked about tricks the leprechauns played on us in the past. The next morning before Russell had even gotten out of bed he asked “how many leprechauns are there?” He was wondering if there was just one like Santa and if there were guys in malls that dressed up. I think he was a little freaked out when Brad said there were lots of them. This was a little overwhelming…I wonder if he thought we might be invaded.

So as we change our red hearts to green shamrocks we are gearing up for the mischievous little green guy.