Well it has been almost two months. Crazy how fast time flies. We were headed into a tailwind the last time I posted and sorry for anyone who looks here for updates but the truth is it has been confusing. Brad had fluid drained, had a scan that looked pretty good from a cancer perspective. Lots of tumors gone but his liver was really struggling to work. We met with the Liver practice…to be honest we aren’t a fan. Not that it is lacking on their side but I feel like liver people aren’t the best to work with cancer patients…I’ll leave it at that. We met with Palliative Care and LOVE them! It is like rainbows and sunshine in those appointments. They want to focus on the good things, how to make things better and goals. We feel great when we leave there and they do the heavy lifting regarding medicine adjustments and sorting out what the cancer people and liver people are not saying.
The truth is Brad felt horrible in July and August. In September he worked hard to rally for Whitney’s Senior walk, his birthday, her birthday, soccer games, bachelor party trip to Louisville and helping me juggle the nuttiest month of our year. Russell and Whitney provide such joy and distraction for us. They give us family time and we make the best of memories doing the most fun things! Brad was SO incredibly proud of Russell watching him run his first Cross Country season. Very quickly he went from top 3 to the #1 runner on his team. His coach was so beyond impressed and proud of him and can’t wait for him to run track in the Spring. To top it off Russell was named “Citizen of the Month” in September by his teachers. When he said goodbye to baseball we never thought the positive impact would be as great but he is so much more balanced and loves his down time. He likes to read which warms his parents hearts to see him doing something that has nothing to do with technology and using his brain. God sent.
So here we are, in a “coasting” period. The bottom line is Brad’s liver is too weak for chemo or surgery and his weight is very low. He’s in a catch 22, gain weight so when they can do chemo his body can handle it with the extra weight to withstand the chemo beat down. Otherwise we are at a standoff with the cancer and the liver situation. Thankfully Brad has been trying hard to each well, gain weight and stick to a low salt diet to help his liver. He has learned how to rest to do things he wants to do and pushes through extreme exhaustion to make it to everything he wants to attend.
Here are some pics from Brad’s adventures:
Russell placed top 10 and got a medal at a huge meet
We got to attend Whitney’s hoco assembly on her birthday
Of course we brought signs
Her bestie from diapers to co-captains of their team
Our amazing 8 seniors
Hayden the best dance date ever
With her TTR friends since forever
Addi and Whitney bday buddies the last 3 years at tailgates
Acceptance into Research College of Nursing
Big love from her daddy for a huge accomplishment as a HS senior
Mama and the boys at Family KU/SigNu Family weekend
Hayden’s Blue Springs Hoco
Whit and her match making made for a super fun Dance group
Brad and the Boys at the Bach Party in Lousiville
Brad was a trooper keeping up
dance girls meet school friends…she has a stellar circle
Our pretty senior
resting his feet after a full weekend of soccer followed by XC during the week
Today we met with the Liver Team at KUMed and they were very helpful in making us feel like he has a safety net for this new piece of his journey. While the Cancer Center didn’t have much to say about his Ascites and said it would build up again with no encouraging of getting it drained the Liver people are like “yes if it builds up call us and we will get you in 24-48 hours and don’t wait until you are in so much pain”…yes thank you Jesus! I have no ill feelings towards our cancer team and am just learning how specialists stay in lanes and FOR REAL I feel like the Head Doctor in this game because I see the whole picture.
So in a nutshell they said Brad needs to be in a REEEEAAALLLLY low sodium diet…like 2g/2000mg! Anyone that really knows me understands that food is my love language so I’m excited to make yummy low sodium food for him. I’m usually a low carb eater but maybe I’ll try out his diet and see if it helps me too. I’m just thankful someone put the CLAMP down in his junk food heavy diet. It’s so hard to be healthy when half the Fam is eating all the things that I have sworn off. I’ve gotten used to it but am glad we are all closer to being in the same page. So anyone out there who has a good low sodium recipe send my way!
The next steps are “hiring” a new primary doctor because the current one is in over her head and confirmed that thought process today with the Hepatologist (I looooved that she totally agreed he’s tricky and needs an experienced PC). So we meet the new doc on Tuesday. Working on a new lab appt for the following week, an Endoscopy at the end of September and more appts to come I’m sure. I really understand lately why retired people feel so busy with so many doctor appts managing various health management issues. I’m so thankful to be healthy and am trying to shift to taking better care of myself so I can keep this train moving!! 🚂 💨
Brad in his somewhat forbidden but totally smart choice and worth it trip to St Louis for soccer and to stay with the Sly’s. He rested, was doted on, had a mental break from his stuff etc.
So the scans looked so much better and the Y90 did an amazing job but Brad has been so sick, can’t eat, super swollen abdomen and in bed. Dr P referred him to a Hepatologist to address the issues his angry liver is causing.
We went in Monday expecting to be sent to the hospital to be admitted and got sent home with the suggestion that he just needed to let the diuretics work. Poor Brad was soooo miserable so I got on the phone and worked my way through the system telling everyone that would listen that he was so sick and needed help. I got a call from a scheduler saying the one and only appt for the rest of 2019 was Sept 3rd! Omg devastation!!! I sent Brad that text…
About an hour later I got a call from a really great nurse saying she had begged and moved things around and got him an appt on Thursday 8/15. Thank You Jesus! Then she called to say he could go to the hospital today to get his stomach drained. We literally rejoiced! He told me he was ready to go to the ER so I’m so thankful it fell into place to see our people and not get all dramatic and dragged out in an ER.
Today was a long morning waiting to drive over at 12:30 but worked out because it was Whitney Jane’s first day in her nursing program. I was able to take some first day pics.
So off we went and thankfully the staff at KU Med is top notch! I’m so proud of my alma mater for employing amazing people and obviously providing incredible training! We have the opposite experience at his primary care doctors office which is getting fired this month. I DO NOT HAVE TIME for rude ass people or people who can’t make a simple action happen that I KNOW can happen in billing. Come on people!!!!! I’ve been dealing with a visit from January 18th that was coded wrong and I’m down to a $50 prostate test. I’m here to tell you I will NOT pay that bill! Those people are going to wish they had a new job when I show up the next time I get a bill. Just sayin….
So today went well, Brad went home feeling great with Pep in his step and we even went on a quick dinner date during soccer practice. As with this whole process we are so thankful for good days and right now GOOD stretches of time.
Please continue to pray mostly for comfort as I think that’s the number one need! Mind body and spirit, we see God’s hand in all we are going through and are so thankful. ✝️💙
The last month, really since the end of June, Brad has gradually lost his energy. We expected it because baseball season is hard on healthy people but he has continued to need more naps during the day, had stomach pain and issues etc. He didn’t want to go to his doctor until after our vacation with Brad’s family in Florida. Once there he battled through the week and had some rest but vacationing can be some work too.
Brad is really good at putting on a show. He smiles through pain and fatigue. By the end of our amazing trip he was exhausted, feet and legs swollen, belly swelling each day and couldn’t eat much. I called his Nurse and told her what was going on and they got him right in. They are very good at talking about positives and dance around negatives. Blessing and a curse in my eyes. Since he’s not getting any treatment right now we are kind of on our own to determine if something is *wrong enough* to make an appointment. They ordered at CT for today and we meet with his Oncologist on Monday. I called again on Thursday to beg for a diuretic to help his swollen belly. I’m hoping he starts to get relief from the swelling soon.
Dear Friends, we need your prayers for the doctor to have a plan to relieve his growing symptoms. His liver is not happy and all we can hope for is intervention to help him push past these latest symptoms. He continues to work from home when he can but the kids text me with nap reports. Whitney and Russell see him struggling like he did last year at diagnosis. It seems so weird for this all to be escalating again at the same time of year. I am here to tell you….my children are the strongest humans on the planet!! They work hard to keep their responsibilities in check and their attitudes are amazing. They make their dad laugh, give him their full attention when they are talking and little Russell is always by his side. It’s been a wonderful Summer for them to all get more time together. I’ve been working at much as I can and we’ve been crazy busy. I feel like I’m juggling chainsaws some days and just trying to not miss a meeting or to do with the busy days of school enrollment. We are forever grateful for that stolen week away as a family having fun in Florida and forgetting the heavy reality we face every day. Our dear friends, the Davis Family came to spend a day with us in Daytona which was so good for our souls. We started our lives together in KC, having our babies almost at the same time and always wished the kids could have grown up together but they don’t miss a beat when we get together. Yvette and I say “first best friends are the best friends”.
How do these kids grow up so fast? And how did our families get so lucky to have smart, kind, talented, beautiful and super fun kids! I’d choose to vacation with this bunch any time anywhere!
13 years ago Yvette and I were talking in the phone and both tried to interrupt the conversation with big news…”I’m pregnant! Me too!” Miles apart, oblivious that we both were blessed with Caboose babies! Trent and Russell are two peas and so cute with their opposite dark and light hair. They both are excellent soccer players on the top teams in their conference. They have big plans to try and play together in college. Hey it would surprise me in the slightest if they made that happen.
Whitney wants to keep Trent so she can “have two Russell’s” she adores them both! We are already planning our next trip back to Florida. We are good and easy travelers so that makes all the difference. Everyone is happy, helpful and appreciative. 🌞🌴 if only we had more time, money and less responsibilities we would do it all and more!
Thank you for your continued prayers, please lift up my children as they will struggle to stay focused at school and I can only pray God will help them balance the worry they have for their dad with learning. Please pray hard for Brad’s mental, emotional and physical strength. As for me, I ask God to give me what I need because I don’t know where to start when it comes to specifics. I trust him and his plan and ask him to give me the words, the actions and guidance to carry out his beautiful plan for our lives.
God bless and I’ll update here on Monday after our appt.
Doctor is stopping chemo. He said the progress has leveled off and wants to try radiation beads (Y90) in his liver. Upon review of the MRI he is still not a candidate for surgery. We are waiting for a call from hospital to get him scheduled for the beads which is two out patient procedures 4-6 weeks apart. They do one lobe in the liver at a time. At about 6 weeks after the 2nd one they’ll scan and see how things look. We are celebrating getting rid of chemo symptoms for a nice little stretch. Please pray for his hands and feet to recover from neuropathy (numbness) and his taste buds to return along with his appetite. Down the road we could restart chemo but for now they are focused on targeting the liver and continue to make progress. Of course all of this will be scheduled around baseball and soccer. We have 3 out of town weekend trips for soccer in a row then 3 in June so we don’t have time for cancer!
We had an amazing Easter weekend celebrating Russell’s confirmation! We are beyond blessed, beyond proud of these brave kids of ours and focusing on positive aspects of this journey while asking God to show us his plan and help us be obedient in trusting him fully.
I’m adding this link to a talk by Melody Ross. God led me to her classes 9 years ago when I was in the darkest hole EVER and her Brave Girls Club literally saved me! I did an art therapy class and it filled up my emptiness and helped me to find myself again. ANYWAY, I seek her out because everything she creates is GOLD! It is unique, it is therapeutic and really helps no matter what mind space I’m in. Look around her YouTube channel and watch what looks interesting, I am listening to this one today to help ward off my pre-chemo and pre-doctor appt anxiety. Thank God it is Easter weekend so I can just float around in my faith with everyone and try to push out that anxious feeling that creeps in. https://youtu.be/YhstYz9_6xY
The reason this blog was abandoned was because of my crazy kid schedule and remains true! Brad is feeling good, bloodwork has been good. His colonoscopy was awesome with no evidence of tumor and he will have an MRI of his liver on 4/18 to get better picture of how it’s looking. We are hella busy with all the kids stuff…baseball, soccer, prom, KU events…no time for cancer actually! Prayers would be much appreciated for Russell as we celebrate his confirmation this weekend and for our appt on 4/22! Happy Easter! He is Risen and never forget God has an amazing plan for you! ❤️
Happy Spring everyone! Woah we’ve had a doozy of a Winter and are so ready for warm weather! We had a relaxing Spring Break which started at the Sky’s cabin and ended with a FamBam Jayhawk adventure. Thanks to generous friends I had my own Spring Break in New York City and I have to say my first trip could never be duplicated! It was unreal! We’ve been so fortunate to be gifted some really big gifts since Brad’s diagnosis and this is definitely one for the record books! I came home filled up and ready to take in our notoriously busy Spring/Summer and a big appt with our Doctor.
Scans always trigger stress…it just does…we tell ourselves there isn’t anything major that will happen because we know they are just to check on success and that has been consistent with every follow up scan. Brad’s CT showed continued shrinkage in his liver which is always great news. They decided to do a colonoscopy to get a better look at the origin tumor and it literally has melted to a normal looking colon texture. So wild and wonderful!
On 3/25/18 we met with Dr. Pendergrass and he is very happy with how things are progressing and responding but did say that liver is the issue and ordered a MRI to get a better look at where the tumors are and if there is becoming an option for surgery. The challenge is they can’t just pluck out all of them and there are in both sides so they can’t just but off the spot. The great thing is that if the colon tumor melted as it did these tumors could keep shrinking as well. We are ONLY 6 months in from diagnosis as of 3/25 and 4/3 from first chemo treatment. That is so early in cancer treatment and Brad has really come so far. He is pretty much on cruise control for the next 3 treatments and we will meet after the MRI to see what he thinks about that. We moved treatment to Mondays which worked out pretty well so far.
Seems like each month brings new side effects and this month we’ve been dealing with adjustments to the diabetes diagnosis and meds. Brad’s bloodsugar dropped to what is a more healthy level but he felt bad which is a strange catch 22. So really what the goal is to manage it and bring it down but not get too strict. He needs a certain amount of carbs to help cushion all the meds he’s taking and will hopefully get used to the ups and downs of that blood sugar. What is the STRANGEST thing is this man was walking around with a liver that filled his chest… full of lime size tumors, blood pressure at stroke level in the 190s, pre-diabetic blood sugar and walked around like everything was fine until out of the blue he started feeling bad. His weight, blood pressure, blood sugar and blood work across the board is looking so good but obviously with all the meds, chemo and everything going on in his 6 foot test tube body he doesn’t always feel all that great. I just wonder…is it mind over matter? He believed everything was fine and blew off any symptoms he felt and never complained, always gets up early…I call him the robot because he just doesn’t slow down very often. He has a very strong ability to ignore anything that is off but seems like blood sugar is one that hits him pretty hard. This weekend was rougher on him but it was ok because baseball got snowed out and cancelled so we had a slower weekend with time to get organized, clean up the house and get rested. He felt pretty puny on Sunday so I declared it a recliner day for him to relax.
Thank you for your continued prayers. We are gearing up for some crazy calendar juggling and ALL the family is coming for Easter to celebrate Russell’s Confirmation. I’m super duper excited! I LOVE when all of my siblings, cuzzies plus all of the kids’ grandparents can be together at the same time. What a huge blessing! I am beyond grateful for all of them setting aside their own crazy schedules to gather together. It will be a glorious Easter celebration!
Sidenote–we survived another Touch of Silver Dance Team tryout week for Whitney. It is always so stressful because we want all of the girls we know trying out for the first time to make it but it is a very competitive squad. Some made it, others didn’t. We are excited to get the new season started and it will be kicked off next Tuesday. Senior year for Whitney is coming in hot!
Russell’s baseball team won their first tournament of the season by a long shot so we are officially bumped back up to AAA. We have a great team, great kids, great parents, I’m so excited for the season! There were a few kids including Russell with some doubts about their abilities going into the season and the big success erased any doubt and really bonded the team together. Brad and Russell were in their element and I absolutely enjoyed watching them enjoy every second. It was cold but honestly I don’t even remember that part. Hoping for gorgeous weather the rest of the way!
Carter has been struggling with stress at school. I’ve been trying to help him get some extra help to get over the hump but Lord Jesus I hate to see him stressed out! Please lift him up.
Brad has some nagging symptoms that have cracked his armor. Please pray for these to resolve and for him to feel tip top shape and feel as good as his blood work has been showing on paper.
Whitney and Russell need some extra luck and prayers to finish strong with their grades. They have some high 80s which they know drives mom crazy! If you are gonna get an 88 you might as well get a 90! Am I right?!? I know they are both trying so I don’t bug them too much. Whitney has her Proms to distract and Russell has practice or a church event every day with no breaks so he’s a busy guy.
Brad and I can both use prayers for our focused and successful results at work. Both of us are so busy but being in sales means we are always playing the odds to be successful and going into the busy Summer we are hoping to celebrate our successes.
Above all we feel so much love, we have been given some incredible gifts over the last six months to help us keep life as normal as possible and for that we can never say enough thank yous. My recent New York trip was a trip of a lifetime with my HS bestie and while I was tentatively nervous it was the most amazing time spent! Her husband was so generous to give us the opportunity to enjoy the city and each other. I still can’t believe it really happened! I walked in the New York City St. Patrick’s Day Parade as the FIRST THING I DID on my first day! I mean who does that besides Ferris Bueller?!?! Oh and then followed it up with the Big East championship at Madison Square Garden! I mean holy wow!