“Regular stuff bummers.”

One of my best friends, Stefanie Phelps, just sent me that. It was a text reply to me after I told her that Luke gets to go back to Lawrence in the fall. She asked how excited he must be!? I explained to her that I think Luke is in shock. He can’t stand anymore disappointment so he prepares for the worst but hopes for the best. She said, “No more disappointment!!! Or at least a rational amount, way down the road like regular stuff bummers.” So now, I am calling them RSB’s. Regular Stuff Bummers. Bring on regular life! In the last couple of weeks I have had a couple RSB’s and I have found myself more emotional about them than I normally would be. That could be due to so many reasons.

*Mason is now a senior in High School. OMG. He finished his finals and continues to run his own business putting in 80ish hours a week. He is really difficult to keep fed and full. I go to him when I need some fast cash 🙂

*My niece graduated from High School and is off to Clemson in the fall. Amazing! But I am going to miss her so much. One of my God Sons graduated from High School and is off to University of Wisconsin in the fall. I am going to miss him so much.

*I am dating at the age of 39 (:))and it is hysterical, mostly. I have fallen for the wrong ones, probably have cx some of the right ones, but will continue to be fully transparent in who I am. Don’t bullshit a bullshitter. Perspective is everything.

*I moved! 3 weeks ago! Just temporarily. An abundant amount of hail damage from about a yearish ago to our home (we were in the hospital when it happened and I gave two shits about anything but Luke and Mason at the time- thank God for GG). So much so, we had to move out of the house for a bit. The rental property we have is so beautiful, refreshing, fun, functional, and such a great time for a different view in our lives. And I PURGED, organized, and divided my life in preparation for the move. By myself. So happy.

I’m currently drinking a glass of wine, eating a brownie and staring at the Shetland pony and mini horse that are my neighbors. Bridy and Evvie are their actual names. A lil Morgan Wallen and Post Malone on the radio.

I apologize for not updating sooner. I’ve been busy livin’ and absolutely loving this feeling of pure JOY. I definitely make lemons out of a shit sandwich but it has been so lovely to just make lemons out of RSB’s. I have tried to update social media a bit but realize after all the complete surrounding of love, prayers and support, I have lacked in my updates.

Luke won’t be able to live with his Beta brothers in the house but we are hoping to find something NEW, CLEAN, CLOSE to Beta, and figure out a “meal plan” at the house. This is all 3 hours new to us so have no idea what it exactly looks like but it is exactly what we have been praying for. We are way behind the 8 ball as far as finding a place but, duh, we will.

Dr. Kohler spent 2+++ hours with us today. So thorough, so kind, so fucking smart. He even admitted to us that we have been “trying to soften him up for 2 years now.” ha. He threw out more sass than Luke or I did today. AMEN! Our Morgan leaves this Friday to go to Italy to shadow physicians through a study abroad program. Luke thought of something to try and ruffle him and told me on the way to the hospital so I teed him up during the meeting. PS- the cells are working.

Suz “Luke. Tell Dr. Kohler what ticket you just got.”

Kohler ” oh gosh, I have no room for anymore heart attacks from you, so what country are you going to now? Backpacking in El Salvador, middle of Africa?

Luke (while Suz is attempting to keep a straight face) “well, I bought a ticket to go visit Morgan in Italy.”

Kohler “oh. ok. well. ok. When is this?”

Luke “in two weeks”

Kohler “well, ok. ummmm. You are kidding me right?”

Luke (I am in a ball in the chair to the side trying to contain myself because I am SO PROUD of both of them and their relationship is just so trusting). “yah, I am kidding”

Kohler “Well they have great bone marrow transplant docs in Italy.

Luke “really? I thought India was even better”

Kohler “No, Italy is for AML and BMT but India is great for other leukemias” blah blah blah. He had nothing but positive things to say about anyone.

Suz. “Italy it is!!!!!!”

It is up to “us,” which I leave up to Luke, to maintain primary BMT care at Childrens CO with Dr. Kohler and team, or to completely transition all care and decisions to KU Med and find a new transplant team etc. KU Med is full of astounding brilliant and kind minds, but the thought of leaving CO Childrens and Dr. Kohler and Dr. Winters and and and and and, feels MASSIVE- at least to me . It does to Luke as well. I didn’t say anything at the time, just tried to let Luke and Dr. Kohler discuss. Luke replied to Dr. Kohler and said “this is family” (aka I TRUST AND ADORE MY TEAM AT CHILDRENS AND CAN’T LEAVE). Luke is still thinking about that decision but it will require that he comes back to CO once a month to check labs, physicals and whatever else. So, basically Thanksgiving and Christmas are a given. So, 5 more times a year and maintain primary decisions at CO Childrens. YET, important to establish a BMT doc at KU med, just in case there are small fires to put out along the way. It is a big decision. I was fighting tears listening to all of this and only piped in when Luke gave me the look. I looked at Luke and said ” I am so proud of you.” I looked at Dr. Kohler and said “I am so thankful for you. The entire team.”

While we are living life, I am really hoping for RSB’s. Those happen and build “character.” ha ha. But, RSB’s we can keep in check and deal with! I apologize for any RSB’s in the last 2 weeks- its been emotional.

Last but not least. A friend from back in the day, Bartlesville High School, son was diagnosed May 21, with AML. Exact same kind of cancer as Luke-at the same age. He is receiving INCREDIBLE care at St. Judes in Memphis (transferred from Tulsa). He, they, all of his family and friends are starting this journey now. I have blown up his phone with lots of advice from Dr. Suz and massive amounts of empathy for what is ahead. Pediatric AML is diagnosed around 500 cases per year across world. That is so small potatoes. It is rare. So rare. It is complete insanity that I know someone (aside from me knowing the 7th floor neighbors) whose son has it. Please, please, keep them in your prayers, juju, love, etc. You can follow them at @hopeforhuntertate

Let’s keep our perspective.

I’m going to keep saying yes to 2024!!!!!

Buckets of thanksgiving. Hope. Joy. Love. No regrets.

Suz