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

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!

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!

 

Ready Set Go…new treatment, new battle

We are thankful for the treatment break since June and the last few weeks of multiple appointments has given us huge perspective on what we’ve missed…in a good way!  Pet and MRI scans, Hepatologist, Oncologist…even a Dentist appt was piled on last week.  We were left with a “now what” feeling after all of it was over.  Today we met with Big Nanner Brad’s Oncology Nurse Practitioner.  Thankfully Brad loves her but honestly…her sugar coated delivery makes me a little crazy.  I much prefer Dr. Pendergrass’ black and white delivery but that is why they make a good team.

Brad starts taking Vectibix tomorrow.  So far it will be the only thing he is given and the hope is it works on its’ own.  There are two chemos they can add to it and they are researching another drug that is a targeted therapy for his kind of cancer DNA.  While it seems great to not be exposed to chemo which causes all kinds of side effects the list of symptoms this new drug offers is quite concerning.  Big Nanner promised she has ways to help get rid of the rashes/acne and the crazy carnival freakshow looking eyelash growth can be easily handled at home unless the growth is on the inside of the eye…google it…I’m not posting gross pics here as they have burned into my brain.  My husband was great at saying “I’m fine” with the other treatments that could only be detected by his weight, coloring, energy level, hand/feet pain and stomach condition.  People say all the time he looks great.  Well…this could throw him for a loop and the fact that they said, “the worse the rash the happier we are because it is working” well that is super unsettling.  But, we believe her when she says she can make it go away.  Hoping for the best.

If tolerated well this treatment can be given for a long time so we are facing the inevitable fact of clinic visits at least every other week and if all goes well that will be it for awhile.  We were able to shed the Hepatologist visits with the warning that treatments can cause irreversible liver failure.  The only other option is to leave his tumors alone to grow and attack so this is the best option for both his cancer DNA, full body side effects and liver health.  We trust Dr. Pendergrass and God’s plan so we will renew our amour and get ready for the new battle.

Thank you for your continued prayers, we rely on them and feel your support.

**Please pray for mild side effects, no further liver damage, his stomach side effects to be minimal and for him to continue to feel well enough to gain weight.

**Please pray for the kids and I to be the best support system we can offer him and to stay strong and productive in our own paths.

Family Fall fun included lots of football, soccer and dancing. It is bittersweet to celebrate Whitney and the 8 senior dancers’ last year together but we are beyond proud.  She is co-captain of the team and leads them well.  Next up is Competition Season…but first let the Nutcracker festivities commence!

 

September 29th and where we are today.

I’m sure lots of families have interesting numerology milestones in their family but I feel like we have a LOT of interesting coincidences. My favorite is that my birthday is 2 days before my dad’s and Whitney’s is two days after Brad’s. I love that they can share the Virgo daughter/daddy birthday bond and celebrate every year together. Some other fun facts…my sister, Jessica and brother, Kyle were born on the same day 3 years apart and are 13 and 16 years younger than me. Even though we didn’t really grow up together and started our real life relationships after they had both graduated, we are just as close as my sister Marci who I grew up with. Sadly Marci and I were separated quite a bit after I graduated when she was 12 so similarly our strongest part of our relationship started after she was a grown up and graduated.

Carter was born 4 days before Brad’s mom’s birthday and Whitney was born 4 days before Brad’s dad’s Birthday. While we planned having them the timing was just a coincidence. Our first baby was due the day before my sister Marci’s birthday. So that brings me to my thought process I had today about the fateful September 29th.

Brad and I went on our first date which was a “Date Dash” in October 1989. He had seen me and my bestie, Kelli, in a grocery store and was with our guy friend from HS who said he knew me and could introduce us. The Date Dash came up and we were set up. It was a blind date for me so when we met I was glad Chris picked well and must have paid attention to my “type” in high school. Brad was tall, cute and funny. We had fun dancing and a little underage drinking and I even got a kiss goodnight. We continued to be party friends but since I was a freshman and he was a pledge at Pi Kappa Alpha we both wanted to just have fun and not start anything serious. We went on dates throughout that school year and when Spring came we were both kind of sad we’d be apart over the Summer but planned on staying in touch. He wrote me funny letters and it was almost impossible to call because I was at camp and only had a pay phone to use. Do you remember how hard it was to call long distance back in the day???? So we wrote letters and when we got back to school he invited me over to his fraternity to catch up. I was so busy with my first year in the sorority house that I didn’t really have much time to hang out but we both settled back into school. My sorority had a party on September 29th, 1990 so I invited my party buddy Brad so we could finally spend some time together. The details are fuzzy but I remember an awkward conversation at The Wheel about becoming boyfriend-girlfriend and being exclusive. I think he started to not like me going to other fraternity parties and let his guard down so we could actually date for real. We were both very guarded in the dating department so we had to break each other’s walls down during those dating years.

Brad and I celebrated 9/29 as our dating anniversary the rest of college and after I graduated we ended up moving in together and had to live in a little town called Spring Hill, KS near my new job. We saved money by living together which was somewhat scandalous (haha!) but necessary since we were poor and just starting out. After a successful run at the Miami County Republic selling advertising and enjoying the old school way of producing newspapers I dipped my toe in the big city job market (found an ad in the newspaper) and landed a job at the Kansas City Business Journal. We were moving back to the city and needless to say I was getting restless with our status and had kind of given up on getting engaged. I started my new job on 9/4/94 and we headed to Vail, Co over Labor Day weekend for a friend’s wedding. On the way up the mountain Brad FINALLY proposed on 9/6/94! He did a great job, the ring was perfect, setting was amazing at a restaurant overlooking Denver. That was my first indication of how Brad ticks. He likes to surprise me and does things on his time table. He has told me NO many times over the years then surprised me with what I wanted or wanted to do. ❤️

So fast forward to 1998. We decided to start trying to have babies, I had wanted to wait but decided I didn’t know how easy or hard it would be and moved up our timeline. We had some medical delays and had to wait a little longer but the first month we got the green light to start trying we got pregnant! We were excited but so blissfully naive. We weren’t going to find out the sex so when we went in for our 20 week sonogram we brought my besties, Julie and Erin and used Julie’s giant old school video camera to capture the moment. The tech was really quiet, we were looking at the baby’s profile, cute button nose, chubby tummy and he looked perfect to us. The tech kept pushing on my tummy to get the baby to move around and I finally asked if something was wrong. She kind of mumbled, I started crying, my friends left the room in disbelief and we were told to go over to our Midwife’s office nearby. Before she turned off the machine I asked her if we could know the sex. It was a boy, we later nicknamed him Tyler. Our baby’s brain didn’t develop past his brain stem and was diagnosed with anencephaly. While I felt a little movement during my pregnancy I would learn how different that was with my future pregnancies. I had a dull uneasiness during those 20 weeks and that day I realized why. I didn’t feel comfortable sending my maternity letter out to clients and hadn’t planned any showers, my intuition was right. Our Midwife connected us with a wonderful doctor who would perform the DNC. I was thankful I didn’t have to get induced or have a c-section. So on September 29th, 1998 our baby boy went to heaven. It was 8 years to the day that we decided to “officially date.” I remember wondering what those little college kids would think about this huge heartbreak if they knew what was coming.

Our broken hearts were healed on baby Tyler’s due date February 17, 1999 with the wonderful news that we were pregnant again with Carter. We were comforted by the extra sonograms we had with the rest of our pregnancies and found out the sex each time. No more surprises! Every year I honor Tyler by thinking about him on 9/29 and the kids talk about their big brother in heaven. They understand the order of things and that if he survived maybe we wouldn’t have each of them as they are now. I’ve also talked to Russell about how he could be that lost baby and might have gotten tired of missing out. Who knows but with each healthy baby we felt immeasurably blessed! They are so perfect and bring us such joy in their own and very different ways!

So our next encounter with 9/29 was my first colonoscopy. I had pain and unexplained bleeding that led me to an emergency colonoscopy. I was 38. I had 4 polyps removed and was so thankful for my symptoms and doctor’s swift actions. I had follow up colonoscopies and paid $1000s of dollars for them to make sure I was free of any additional pre-cancerous polyps. That was 2009 after too many deaths in our life so a cancer scare was very terrifying.

I’m sure there are other 9/29s that are notable but the most recent, 9/29/18 was THE turning point in our lives. After a month and a half of being sick, losing 30 pounds and having pain in his stomach Brad was diagnosed with colon cancer that had spread to his liver. After two full exams in the ER and a Primary Doctor I found online after getting told numerous offices weren’t accepting new patients. He had a month of tests and finally an ultrasound that showed lesions on his liver. The doctors didn’t notice is enlarged liver during either of his two physical exams.  Our oncologist told us it was enlarged at least double the size and extended 4 inches under his rib cage.  This was causing his cough that he had for over a month and caused him to not be able to say a full sentence without coughing.  I still don’t understand why a doctor didn’t notice that int he beginning and START with the liver tests. But I am thankful his Primary kept searching and discovered the colon tumor in a CT scan and confirmed the metastasis to the liver. His ultrasound was on his 48th birthday 9/11/18 and his diagnosis was on September 14th. We were in shock and had a lot of phone calls to make. I told my boss I would have to be at a lot of doctor appointments and needed flexibility to figure out what was going to happen next. Against Brad’s privacy wishes I reached out to a friend to see if he had any “INs” with KU Med. I needed action fast and wanted him to see an oncologist immediately. That night, Brad after the CT scan revelation, went with Russell to his soccer game and I went to Whitney’s football game at South. I felt like a zombie. I floated through the night.  I watched Whitney on the sidelines smiling so big and my heart broke.  I knew she’d be crushed by the news we had to tell the kids the next day. I had a busy morning planned getting Whitney from her parade to Lawrence for Carter’s first Family Day at KU. Brad and I had agreed we would tell the kids while we were all together as a family. Whitney and Russell had watched Brad decline so fast and get super skinny. We all knew something bad was going on.  The cough wouldn’t go away, he laid around a lot and that just was never him.  He didn’t take naps and had fevers every day around 1pm.  He would shake under a big blanket until it broke.  When the fevers started I knew it was cancer.  Carter was blissfully oblivious and we all protected his ability to enjoy his freshman year and not have any of the stress we were feeling at home. We were also still getting used to being a family of 4 most of the time so being the FamBam 5 was always very special.  I got all of us some little thread bracelets with a little silver coin to symbolize our unity in the situation even if we weren’t all together all the time. Brad’s is bigger and has a coin that symbolizes Serenity. He has worn it every day since. So….on August 15th, 2018 we dropped our oldest Son off at college at KU and on September 15th, 2018 we had to deliver the heartbreaking news that their dad had cancer and would start fighting it immediately. It sucked. I learned to compartmentalize my life with cancer and everything else. I encouraged the kids to keep their grades up so they wouldn’t add that kind of stress on top of worrying about their dad. It was bumpy at times but all 3 ended the year reaching their academic goals and will head into next year with the ability to cope while keeping everything in check.

We got home from Family Day and I got the number I needed to call Monday morning. By the time I got to work that Monday the KU Med Nurse Navigator had all of Brad’s files, was coordinating biopsies, a colonoscopy and helping us pick an oncologist. I was so thankful the ball was in their court (KU reference intended) and on September 29, 2018 my husband had biopsies done on his liver to scientifically determine he has Stage 4 colon cancer metastatic to his liver. That day sucked, he couldn’t eat forever, the process was slow m, the medical waiting room before surgery was so frigid and his patience was beyond tested. Honestly, the rest of everything has been way more pleasant than that experience and I won’t mention the hospital but it wasn’t KU Med and their billing has been the most messed up of them all.  I’ve been strong, I’ve been a disaster and I have no choice so I just plow through and keep things going. I’ve battled with a lot of doctors offices over miscoded invoices and billing mistakes. It’s my least favorite thing but I’ve learned a lot and am less emotional about it. It usually works out in the end.

Today he had his second Y90 procedure which is really cool science involving shooting the tumors in his liver with radiation beads that choke off the blood supply and dose them with radiation. It is an outpatient procedure done in 3 parts-> mapping and test run -> right side which is the hardest as it is 2/3 of the liver -> then the left side which ended up taking twice as long because of the anatomy and they had to basically do the whole thing twice in two spots because if the arteries. So far the pain isn’t as bad as last time so we are thankful that. Dr. Collins and his nurse Elizabeth said their goodbyes and wished us well. It’s weird…you establish a relationship and trust then they are done with their part and say goodbye. All we know is there will be a scan in two months and a visit with Dr. Pendergrass at some point. While it is SO nice to have a lot of normal feeling days it is weird to not be so closely watched. It has felt like the stress level has been dialed way back enjoying the non-treatment weeks.

We would love your continued prayers for God’s grace to continue to guide and lift us up. We feel happy as a family of 5 and are cherishing this Summer all together ❤️

Science is Cool

We met with Dr. Zachary Collins on Friday and really liked him. He is an Intravenous Radiologist and will be doing Brad’s next treatment. He will perform Y90 which involves a long mapping procedure on Monday 5/6 then a first treatment on 5/13. It will involve anesthesia for a test run and they block an artery that leads out to other organs. He will have to lie flat a lot and get imaging done so they know where to shoot the radiation. It is delivered in little beads that cuts off the blood supply to the tumor and the radiation is then distributed over 2.5 days. I’m sure a Google search describes it better but that’s the process in a nutshell.

The most important part of our meeting was Brad asked about life expectancy. He has looked at stats online and heard the words “this is non curative” but hasn’t asked THE Question. The doctor said this will add 6-12 months to 5 years and said we just don’t know. He was pretty bummed out but I told him we don’t know what things will look like after the procedure. While the amount of cancer in his liver has always been the biggest obstacle we’ve seen progress in shrinking it. Clearly he has lived a long time with a lot of cancer being in his liver so really we are beating it back with any treatments possible. It can be compared to heart disease…you just keep treating it and trying to be as healthy as possible. What we DO know is he feels really good. I told him to focus on how he feels each day and as long as we can keep doing things to prolong how he feels now then it is successful. He was SO sick when we started so in comparison the chemo has already given him his health back.

Our Spring has still been chilly so he has enjoyed the cold sensitivity fading. He is hoping for his taste buds to rebound and neuropathy in his hands and feet to fade. With this new treatment and plan he will only have a few dates on the calendar and the rest of the Summer should just be filled with baseball and soccer! Hopefully we will get some Lake days in there too! I had expressed to our oncologist that we just really wanted him to be as well as he can this Summer. While medically it was time to switch it up I think Dr. Pendergrass took that into consideration and I SO appreciate that.

Cheers to a good Summer and prayers requested for the kids as they work hard to finish the school year strong. Please pray for our mental strength, Brad’s physical strength to endure this new treatment and don’t take a minute for granted! Every day is a gift!

I’ll close with some fun pics of the kids doing their thing 💙💗💙

The armor is cracking but that is ok

What can I say, we knew things would get harder and they aren’t “unmanageable” but they are harder.  The tricky part with a break like Brad had in December is we stressed about him not getting treated but got used to him feeling pretty good.  He had just started to experience the harder chemo symptoms when he got sidelined so with #8 brought more hurting for his hands and feet and more fatigue.  He even had some nausea and food was just plain gross. I’m thankful his schedule can adjust as needed to accommodate his needs and while it really sucks for him to miss out he can rest to gain strength to make the next thing.  We count on that ying and yang in this process.

I had a little bit of a hissy fit after chemo on Wednesday.  It is time for my 5 year checkup colonoscopy and I realized I’m a year late.  My doctor’s office was sold so no one had my records and deadlines on their radar.  I hastily made the appointment as soon as I could. After some phone calls to insurance and the facility they gave me numbers of anything from $3000 to $15000!  I about lost my mind!  And this is why I love my people, my network and my God who finds me the answers before I totally freak out.  I was texting with my sister and she mentioned Aflac and their cancer policy.  I had heard good things about Aflac and had meant to call and check it out.  I’m annoyed with myself for not investigating earlier when my gut was telling me to.  But that’s ok…the plan is to get some policies in place to help with potential future accidents for the kids…Whitney’s injury in December was expensive and could have been very cheap with Aflac.  I’m getting the cancer policy to help protect anything I could encounter going forward.  By doing that the estimate for the colonoscopy could be $75 (plus premiums) instead of an astronomical fee.  More on that after I get it all in place.  I’m finding that I only follow my gut lately after I have a mini panic attack, need to fix that.

We have had some other things land on our laps in the last few weeks that we are investigating but it all boils down to God providing when we need it and when we don’t know it is coming.   I have to consciously remember to trust him and ask for his guidance.  I’m at that state of “I don’t even know where to start” when I pray so I just ask him to take it all and show me.  And boy has he!  Great things out of the blue, great people reaching out to me and taking care of me.  It is very hard to accept help and generosity but even a little extra attention.  It has been so worth it though, I’m staying open and letting people love on us.

Speaking of that Brad is going to start attending the Cancer Connection breakfasts at the church!  Praise the Lord!  Four long months ago he was SO not ready for any of that and now he’s putting it on his calendar and is excited to go.  It will be perfect, mornings are his Jam and he will be able to get some good conversation, advice, worship and whatever else the group does when they get together.  They have been so incredible to us since the first phone call in September so I’m just so thankful.

A few days ago I would have posted this all freaked out with my head spinning in circles so I’m glad I was able to float back down to earth, screw on my problem solver filter and take care of stuff.  We look forward to heading into Brad’s easier days this week before #9 next Wed. After a fabulous dance competition weekend we are praying we can get through February to our St. Louis trip to the Missouri State Dance Competition! We will have a blast with our Touch of Silver Dance family and I can’t wait!  This team is an eclectic group but boy are they great dancers, beautiful ladies and so darn funny!

We’ve gotten closer with some of the parents through all of this cancer struggle and will cherish them pulling us up when we need it.  Kindness is the biggest gift we have to offer and even the little messages, hugs, encouraging words are the most treasured support.  When our armor cracks and we feel the weight of the WHOLE situation straight on our chests…it is the little gestures that pull us through and up so that we can breathe and refocus.  Finding focus is hard for all of us.  Staying on track is a big feat especially for the kids.  That is what I’m giving to God the most these days because I will make myself sick worrying about them.  I remind them of study time and encourage them to do their best.  I know it is so hard for them and I just hope for their sake they can keep a high level of effort and success.  Down the line schools admissions offices, the business and nursing programs…employers won’t give them a pass because their dad was sick.  We all have to JUST DO IT!  Cliche’ but it rings true.

Prayer Requests:

Please pray for Brad’s numbers that are off and that they find their way back to normal.

Ask God for dramatic healing as we battle through these hard next four treatments.

Pray for some clear, honest and good news from Dr. Pendergrass next Wed.

Send loving, lifting and peaceful prayers to all of us but especially Carter, Whitney and Russell.  My heart breaks for them and the burden they carry but know in some way God will make them better in all of this.

oxox, Peace

Kim

 

All We Want for Christmas is Chemo

I thought about updating everyday for three weeks but wanted to see how the cliff hanger ended first.  After the peak of good news from Brad’s scan on 11/28 we followed that up with “flunking” the blood test on 12/12 due to low White Blood Cell counts.  Brad had a rough ride during #5 and ended up with a sinus infection.  Apparently it is true that antibiotics kill the good stuff and the bad stuff.  I had always heard that but we saw it in action.  We tried on the 12th and the 19th and his count was even lower the second week.  We didn’t let the news put a bummer on our holiday celebrations and Brad won’t miss an event so we just kept going.  They told us to come back on Christmas Eve and we’d try again.  There are definite pluses to missing a chemo treatment since he didn’t have to deal with the side effects and had a decent amount of energy.  BUT that was a catch 22 since he felt good enough to be my Christmas Elf running errands all over town he was also with lots of germs.  After getting kicked out of our second try I started making him Vitamin C drinks with pineapple coconut EmergenC packets, pineapple and orange juice.  I’m not sure if that had anything to do with his rebound but I told him I’d take credit.

The morning of Christmas Eve with lots still to do we went to the clinic with not an ounce of hope that he would get the treatment.  It was quiet, only a few people were there and from neighboring conversations it sounded like many of those patients were the ones who had gotten booted out in the previous days and weeks. Brad commented that all the “derilics” were in it together.  I stayed busy until it was time for them to tell us whether he was staying for treatment and my mood was declining by the minute.  Our very nice nurse came walking towards me with the report in her hand and gave me a thumbs up so I was instantly relieved and got to watch him get the good news.  We were totally shocked and immediately started texting friends and family to let them know he made the cut.  His levels had tripled in five days! Everyone celebrated with us and I think Christmas Eve and Day were spent much happier for all who are rooting for Brad.  His fatigue reminds us of his reality but we are thankful for it at the same time.  Cancer is so weird.  It makes you thankful for the craziest things.

We had a wonderful Christmas week spent with family out and about a little bit, celebrating our friend’s 50th birthday, enjoying time with our teams and truly feeling the holiday spirit.  I used to hate Christmas…it was hard on me as a kid so it took a long time to peel that damper off and remember to make my own new way.  This year truly felt like the holidays were intentional and the presents were second to the time spent with each other.  For anyone who contributed to group gifts given to us I can’t fully express my appreciation but please know you all are life savers!  Our church brought loads of presents for the kids and seeing their faces as they opened each one was pure magic.  We’ve been given so many gift cards for restaurants, grocery stores, QuikTrip and Visa cards.  All of this has been amazing and definitely eased the pressure on me to find ways to make this all work.  Friends handed us cards or venmo’d money to help out and while I feel weird accepting the gifts I know it helps them feel like they are helping.  I know that feeling of helplessness when a friend is having a hard time so I’ve learned to accept help with a grateful heart.

So now that the inlaws have gone back home I hope to be productive, get organized and be ready to roll in 2019.  I have so much hope for a great year no matter what is in store for us.  The gift cancer gives you is the blessing of being present and appreciating very normal days.  We say sorry quicker, try to be happy as we can and I’ve been really trying to stay tuned in to how the kids are doing.  That is the hardest part. Please pray for Brad to stay healthy enough for chemo and for his hope, faith and sunny attitude to remain intact. This is a long road and we feel weary many days but are reminded we have to keep going! I plan to be more organized and focused so I can keep my stress level in check. Cheers to a wonderful New Year!