Update from the trenches

This Stay At Home thing is such a multi-faceted happy and devastating situation.  I’m not going to list the things that Whitney has lost because she is thriving.  I will update you all that she did not make the KU Rock Chalk Dance Team which was extremely devastating in the beginning but we have adapted and see very clearly why God’s plan did not include that adventure.  She will only be at KU two years so we are embracing the idea of her being a regular college kid and sorority girl enjoying the big school college experience before she moves on to Nursing School.  Don’t get me wrong, my heart drops every time I see something about Rock Chalk Dance but then I remind myself that my girl can just go and do fun and important things without a big spotlight for the first time in her life.  I’ve so loved watching her transform into this newest, current version of herself post-dance.  Oh and her recital was cancelled so her last day of dance was a normal day…which I’m also appreciating.  Some endings weren’t major, big, tear jerking situations, they were normal, happy days.  One thing that has been constant is her amazing support system at her dream job, Stephanie’s Bridal/Perfect Dress. They brought her dresses and took pics of her to promote a sale. Dang I love those ladies so much, they pour goodness, beauty, strength and more than I know into Whitney!img_5283

 

Carter has thrived as the “bowling ball in the basement” (the kid barrells through life knocking down things and people, he hurt his toe and finger recently because he just goes and doesn’t think so we have come to realize we need to say “don’t knock down xxx when you take out the trash” or whatever the situation is. He is totally my brother Kyle in that respect. Must have to do with big muscles.) and his biggest disappointment is that the gym has not opened yet.  He is so disciplined in his exercise and works out almost everyday.  I’m so thankful for that passion in him as I know it will carry him through life and sustain his physical and mental health.  So far it looks like he will have 4 As and 2 Bs this semester which we are so proud of!  “College is hard without teachers,” was a pretty devastating comment to his big hearted mama!  I offered help but he wanted to forge ahead and I am so proud of his effort and results! We let him have his college buddies over this weekend and it was so good for my soul to see him in his element since he’s been robbed of the end of his 2nd/academic junior year.  He’s feeling very robbed of a 4th year since he is set to graduate next May.  I hope and pray in time he will be ok with it. Right now it feels like a loss but a $35k saving in the long run!

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Whitney has one more test and is pretty much guaranteed an A so she’ll end the semester with her dual credits as a 4.8 and 4.0 cumulative gpa from high school. When Brad got diagnosed she struggled big time…we all did…but it affected her gpa and she has focused very well this year knowing these dual credits could not only raise her high school gpa but give her a very high college gpa starting out.  We’ll see how it all shakes out but I think this time has given her a glimpse into how life will be in college with all the time in the world and a MUST DO organization so it doesn’t just slip by.

This girl…in a flash!

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Russell Spencer Woods is living his best life!  He is such a hard worker and this situation has shined a spotlight on his inner focus, drive and organization.  He has been trying to eat more to grow, works hard at soccer skills, has stayed super organized in school assignments and is set to get all As as well.  He’s so annoyed with his one B in middle school that will cause him to have slightly below a 4.0 for the middle school career gpa.  Personally I’m happy he felt the sting of a B now so maybe he’ll keep that drive for As in high school.  This week he started trying to train our dog, Shadow, to close the door.  I just have to laugh…he is relentless…Shadow loves it, he gets lots of treats and attention and so far Russell has been successful in teaching him. Now the challenge is to get Russell back out running to make up for lost training.  His skills have improved but obviously hot having multiple training days each week has taken a toll.  The good thing is he has grown taller and gained weight so he’s staying focused on his nutrition. This kid…he really amazes me.  He is also super obsessed with getting a 2nd dog after a visit to a friend’s house where everyone had a new dog!  He is the dog whisperer!  He would already have a new puppy if it was up to me but Brad is the voice of reason and reminds us that when life is back to normal we’ll never be home.

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So my biggest news is we have all MOSTLY enjoyed our time together.  Moods flare and we sometimes have a hard time with attention spans which can be annoying to the person talking.  We are so excited for Whitney’s Grad Party on the 23rd and hope people will feel comfortable coming.  Everyone I know is ready to bust out and be careful but stop with the crazy.  We Will Be Careful for Brad’s sake but we HAVE to get this economy going again!  Don’t @ me with anything…we HAVE to start this economy.

So Brad had his 2nd Chemo today.  The administered it slowly which helped and he had a little reaction but found that sucking on candy helped make it go away.  He bargained with his Nurse Practioner to not get Benadryl and it worked.  Thankfully.  That was not a great result last time. Our prayers today are that he will feel better this round.  He felt yucky for a week and we need him to feel good for Whitney’s party and our family that are coming to visit.  We hope all will go smoothly and all Whitney has dreamed as her senior year as been unlike anyone could imagine.

AND we all worked hard to spruce up our deck.  Brad did the heavy lifting in design and replacing boards.  I wanted to scrap the whole thing but he saw value in a sprucing plan and it turned out great!  Everyone helped, I put in some backbreaking work but it was so worth it!  I’m proud of us for upcycling because there are so many fancy patio sets out there but we were all in agreement that we liked most of what we had and just needed a few upgrades. So lots of upcycling happened which is so in line with our family vibe and we seamlessly found to new chairs to add.  Carter talked me into keeping two old rockers that are falling apart so everyone is happy and we have a beautiful multilevel space to enjoy.

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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!

 

The Tsunami has passed…

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:

Plus and Minus Teeter Totter

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!

http://www.sodiumoptional.com So far I’m liking this site 12 hours into this new game plan.

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.

Quick Update

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. ✝️💙

Update on Brad Aug 2019

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.

Plot Twist, trying something new

Brad Update:

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.