In Celebration of Judy Lynn Brady Bush

On Thursday, February 20, 2020, Judy Lynn Bush passed away in New York City at the age of 66 after a 3.5 year long battle with leukemia.

Judy was born December 25, 1953 in Browning, Montana to Verl and Norma (Jones) Brady. She graduated from Brigham Young University in 1975 with a degree in Spanish. From 1976 to 1977, Judy served a full-time mission in Bolivia for the Church of Jesus Christ of Latter-day Saints. In 1977, she moved to Los Angeles, California where she met her future spouse Edward Bush. After Ed’s baptism, they were married in Los Angeles on November 21, 1981. They lived in Colorado from 1986 - 2010, where they raised their three daughters. From February 2010 until July 2016 they lived in Sykesville, Maryland, and then moved to Alpine, Utah, after Ed’s retirement.

Judy had a passion for learning. She loved to travel and took us around the world on her many adventures. She was a great organizer and led after school Spanish classes, neighborhood puppet theaters, and church choirs, and was the prime developer and contributor to the Alpine Nature Center. One of her greatest loves was music. At the age of 45, she finally got the banjo she’d always dreamed of and then created her first band with her husband and daughters. Judy then extended that love to her friends and created folk bands in every city she lived. Later in her life, she started blogging her adventures as a way to keep up with family and friends. She loved life and lived every moment to the fullest.

Judy will be loved and remembered by her husband Edward Bush, her three daughters Brittany (John) Nuttall, Amanda (Nolan) Hauta, and Crystal Bush, her four grandchildren, by her mother Norma Brady, and by her siblings Verlene (Paul) Siska, Annette (Kent) Evans, Barbara (Kent) Stevens, David (Rachael) Brady, Joan Runs Through, and Jon (Sara) Brady. Judy will also be forever remembered by her numerous nieces, nephews, extended family, and dear friends.

Funeral services will be held Saturday, February 29, 2020 at 10 a.m. at the LDS Church building 1125 N Alpine Blvd, Alpine, UT 84004. The viewing will be Friday, February 28, 2020 from 6 to 8 p.m. and Saturday morning from 8:30 to 9:30 a.m. Flowers for the services may be sent to 1125 N Alpine Blvd, Alpine, UT 84004 on Friday afternoon.

New York, Here we Come!

We're going to New York again tomorrow to start the clinical trial. We super happy to have that opportunity. We have a lot to do today.

I need oxygen, but don't know how to work the tank yet. I need 3 tanks: A home tank, a portable tank, and an airplane compatible tank.

I need labs today, and will need an infusion if my hemoglobin is too low. I had to have two units of it yesterday. It takes about 2 hours per unit to get it in my body.

Ed has a thing in his mouth and is at the doc this morning. He is afraid he has oral cancer and nobody will take care of me if he dies. I think it is unlikely, but we'll find out soon.

My back hurts again today! I'm filled up on oxy and tramadol, but it doesn't seem to be working today.We'll pick up an oral Dilaudid pain pill today when we drop by for labs. Hopefully, that will get us to New York!

Nothing ever runs smoothly!

Two Parties

I had a great day yesterday with two parties. One I was able to go to and the other one I was not able attend. The first one was a bluegrass band playing in the lobby! I had such a good time there and was feeling great and able to tap my toes and sing along. They were so nice to even let me take my picture with them afterwards. Near the end. They sang Have I Told You Lately That I Love You. That had me in tears the entire song as I remembered my dad singing it to my mom as she played the piano.

The band even came bearing gifts! Marcy, the woman behind my left shoulder, made this cute lap quilt for me. It has giraffes on it! It fit right into the theme of party number two, which I was not able to attend!

We hosted Clementine's 3rd birthday party. It was so much fun planning the Jungle theme. I was sorry not to be more helpful. The kids had a treasure hunt where they followed clues lovingly drawn by Ed. This was a snake pit.

They also had mazes and tunnels along the way. They looked so cute in their safari hats.

Ed said Brittany was terrific helping the kids with the clues.

Ed also reported that Clementine was grinning ear-to-ear during the entire party. She had a really cute monkey cake and felt super special all night. Just like me. Grinning and pain free at my bluegrass party!

I'll be discharged tomorrow and will hopefully be able to manage my pain on Wednesday on my next trip to NYC. We Should find out tomorrow whether I am accepted to the clinical trial. We are cautiously optimistic!

The scream

My trip home from New York was one long scream! Although I did have first class from LaGuardia to Chicago it didn't help with the pain much. Neither did the pain medications. The trip from Chicago to Salt Lake was unbearable! I hadn't slept much for 3 days, and that was bad, too. We went to Huntsman in the morning on Friday. And spend another two unbearable hours in the waiting room. Ed said it was okay if I let it out. I tried not to make too much noise, but it was pretty obvious that I was in pain.

I finally got some Morphine, Dilaudid, Oxyicodone, Ativan, and Dexamethazone! That did the trick, and I had my best night's sleep in a week! Even a wake-up call for labs at 3 a.m. didn't bother me!

We have not heard about whether we are accepted to the clinical trial, but we are booked for flights and hotels to New York for Wednesday next week. A really nice company paid for that. Sadly, this messes up our Thursday Picard- watching parties. I guess this is the least of my problems!

I'm spending a couple of more days in the hospital as they manage my pain. My low oxygen is also a problem to get under control! Ed also got a good night's sleep at last, but is still very busy getting my clothes and calling the travel people. 

He is also helping with Clementine's third birthday party at our house this afternoon. I'm sorry to miss the party, but the doctor had no mercy on me! We'll have to do a little face timing!

In the meantime, color me happy to be pain-free enough to blog today! 

Meet the Team

We had a whole team working with us today. Drs. Mato (May-Toe)  and Rocker (a fellow) are running the show, with a host of thousands helping them. Today they took 16 vials of blood, did three CT scans, and an EKG. And last, but not least, a bone marrow biopsy. They used the same "owee" technique that Huntsman employs. Tentative plan is to come out once a week starting next Thursday. Later we would transition to once a month. It is a daily pill. That is if we get into the study. If not I'll be posting more crying pictures.

My legs and back are killing me today, so I had Ed push me around in one of their fancy wheel chairs. Judy Hopps, my lucky bunny, made the trip.

Tomorrow we return home. I hope my knees and back are up for it!

New York, New York

We Made it to New York last night about 9:30. It wasn't so bad as we were still mentally on Mountain Standard Time. We are staying at the Affinia Gardens Suites about five blocks from Memorial Sloan-Kettering Hospital.

We had a very tender Mercy experience at the airports. We drove up Sunday night and stayed in a hotel near the airport as it was supposed to (and it did) snow on Monday morning. I had a terrible evening and was unable to sleep because of the pain in my legs. Ed said "let's just call it off." But in the morning, I felt better and we just went to the airport. So happily I did not have any major pain issues at the airport. Maybe it's because prayer of prayers and blessings. And maybe it was because of Tylenol Tramadol and Lidocaine patches. We left no stone unturned.

We were also able to upgrade to first class on both legs of the flight. That made an amazing difference on my legs as well. We were delayed so long in Salt Lake that we missed our original Denver to New York flight. But we were able to catch one only an hour after we got there. It was an extra thrill to have to be De-iced twice as well.

Our appointment is at 4:30 today and we have a bunch of tests tomorrow morning, my favorite of which is another bone marrow biopsy (my 8th, but whose counting?)  We're enjoying our little one bedroom kitchenette. Ed's sitting in the recliner now, but I'll be needing it after my biopsy tomorrow!

Feeling the Love and a new ray of hope

I have been feeling the love through all your good wishes. It has really helped buoy me up the past few days. We stopped off at Barbara's house after labs on Thursday. It was nice to have Annette and Kent meet us there, too. I had the whole couch and a heating pad to myself, as my legs are still killing me!

It was nice getting special delivery flowers from Reagan in Maryland. It was also great meeting her much bally-hooed boyfriend who lives in Utah. It turns out he's just as nice as she said he was. It was also fun face-timing Reagan, who is practically perfect in every way (except for her love of iphones and her lack of love for Star Trek).

Everrt and Janet came over with some songs and a foot rub, both of which went a long way towards relaxing me and calming me down. We have so appreciated the outpouring of love.

Clementine, who will be 3 next week, serenaded me with her flute.

Mabel said my legs smelled minty fresh after Ed put some Aspercreme on them. (By the way it didn't help with the pain.)

Brittany did the crossword puzzle with us. My new sloth from Bishop Shippen was there to remind us that although the wheels were turning slowly, we would eventually beat this cancer back!

The kids love it when we do the crossword, as we let them watch Dinosaur Train.

LATE BREAKING GOOD NEWS, MAYBE. I got a call from Dr. Mato (unfortunate deadly name for a doctor) at Sloan Kettering in New York City today. He said they had a study that I would be  good candidate for, and if I could fly out next week, we could meet him and get the tests taken to submit my application. There are no guarantees, but this study does not exclude BPLL. It is based on a BTK blocker and is a pill that they have been having good success with. If you're interested here is a link: https://www.mskcc.org/cancer-care/clinical-trials/19-077.

We booked tickets for NYC on Monday and have an appointment on Tuesday. Brittany volunteered to go for Ed if he'd watch the kids. He passed on that. Our biggest problem is how I will withstand the flight if my legs don't get better in the next few days. We tried to get first class, but they were all sold out! I hope my seatmate doesn't mind some rocking and moaning!  We feel like a ray of hope has once again been extended to us!

Rejection

Do you get sick of happy faces. Here's a sad one. Dr, Stephens just called and said the Juno lab has rejected our application. It is the PBLL that was the final decision. It was our last chance. Dr. Stephens will check with MD Anderson or Mayo clinic, but no one wants to try to cure a rare and obsure disease. We are distraught!  There might be some more chemo that could help for a short time, but it is not looking good...

Blood, Pain and Tears, and a dash of hope

I wasn't well enough to go to church on Sunday, but I was happy to receive visitors as I sat in my recliner with a heating pad on my back. The idelalisib (chemo drug) is causing me muscle pains in my lower back, my shins and calfs and thighs, as well as my knees, and now my ankles. The pain ranges from a 3 to a 10. I try to walk some, and while I look very limpy it doesn't hurt much. But afterwards it hurts a lot! It was nice of Barbara and Kent to commiserate with me. Happily, my WBC is steady at 193.

On Monday we had doctor visits with Dr. Stephens and Dr. Couriel. They are both very happy I will be starting the CAR-T study on Friday. I am happy, too1 I have to lay off the idelalisib for two days preparatory to having my T-cells harvested. I hope that helps my legs and back feel better.

I had 26 vials of blood taken on Monday. That was a record for me! I also had an EKG and an echocardiogram. The echocardiogram showed that my heart wasn't pumping as strongly as it was last April. I went from 65% to 45%. This is also a result of chemo drugs. I'll be meeting with a cardiologist to see if we can do something to get it back up to snuff.

All my paperwork has been sent in to the Juno lab. We should hear today whether they accept me or not. Keep your fingers crossed for me!

In the meantime, Ed is taking good care of me. This morning he made me Western omelette to eat in my throne chair I love him!

Picard and T-7!

We were in a good mood to watch Star Trek Picard Thursday night. My WBC was stable at 195 and things were looking up. Plus, the excitement of watching our favorite Star Trek captain again!

We had some Bjoran hasperat (veggie rolls) and Borg cubes (chocolate rice crispy treats) for snacks, as well as as Klingon Blood Wine, Romulan Ale, Ferengi Slug-O-Cola and Hue-Monn Root Beer floats to drink.

Picard was great, and fed our Trek-less souls! It's great to be back in Star-Trek land. The only sad part is we have to wait for weekly installments!

We were happy to have fellow Trekkie Bishop Shippen join us. He got to kill to birds with one stone: enjoy a new Stark Trek series with friends and visit the sick (me) at the same time! He even dressed as Picard for the occasion!

In other sickie news, the long dormant nodule on me left arm is starting to grow again! The one on my right hip is large and uncomfortable. And I am out of breath most of the time.

GOOD NEWS! Huntsman called yesterday and said they were able to move my leukapherisis (that is what the call the harvesting of my T-cells preparatory to treatment) from February 19th to January 31st! We are so happy to get started on treatment. It is also scary and nerve-wracking! Next week we start with lots of meetings with teams, doctors, and lots of heart and lung tests. We are now T-7!

Ice Castles and Good Labs

My big outing of the month was to see the Ice Castles in Midway yesterday. I rested all day and took a chair with me so I could sit as much  as possible.

It was fun being outside and watching everyone have fun. The weather was about 30 degrees and no wind--perfect for going down ice slides!

Clementine didn't meet the height requirements for one of the slides, so I just parked my chair next to a heater, and we enjoyed bonding while the others stood in a very long line waiting for their turn.

My labs today were a happy surprise. My WBC went down from 199 to 190. My LDH also went down, indicating that this is not a blood draw fluke. We were so happy that I didn't break 200!

The City of Hope cannot get me into their Juno trial because it excludes BPLL (my leukemia), and they could not get me into their in-house trial before the 17th of February, which is when Huntsman hopes to draw my blood for the trial. They also said that they had had poor results with BPLL patients on their in-house trial, so would not recommend it for me. Here's hoping I can keep my WBC in control for another month. Today is T-27!

I got a nice video of Ed, Brittany, John and Mabel coming out of the long slide yesterday! It felt great to be a part of life again. I'm still out of breath, but not quite as weak as last week. That and a little Immodium made the whole outing possible!

Tale of two bulbs and a call from the doc

My big outing this week was to Sam's Club with the family. I can walk okay as long as I don't have to stand in one place, which is unbearable, so Clementine and I took a little rest on the sacks of flour.

While we were sitting there the doctor from the City of Hope called me. She said they will see if they can get me in a CAR-T trial any early than Huntsman's date of February 17th. She's said she'd call me back on Monday. Which she won't, as it's a holiday. Hopefully, we'll find out on Tuesday.

I also had a nice rest with Mabel on a couch at the store. I keep hoping this chemo tiredness means the drug is really working well. Every blood draw is new hope. On Thursday my WBC went up to 199. I was thrilled it didn't break 200, but would be even more thrilled if it would go down!

I'm hoping to be like the amaryllis on the left, and surprise everyone with my ability to thrive. Last year my ministering sister gifted the bulb to me for Christmas. It was beautiful, and after the flower died I put the pot on a shelf in the garage. I didn't water it. I received a new amaryllis from the same ministering sister this year. It (the one on the right) is doing fantastic. But when I came home from labs one day I could see the old one was also doing fantastic. 10 months on a shelf in the garage with no water. Go figure! We brought it in to grow with its friend! I wonder which one will blossom first?

T-34 and counting

This shot is from January 1st. It is out of order, but I like it! Ed and I had a bit of a snowy day driving up to Huntsman yesterday. It turned out to be a long day, but the sun finally came out. Here's the low-down.

I can start the CAR-T treatment on February 17th at Huntsman. That would be the day they draw my blood. Then you wait 3 or 4 weeks to get your new T-cells. That would make today T-34. My WBC went up to 178 yesterday. We could change drugs, but we're hoping this one will help us limp along till we try something else. There is no guarantee with any drug, and the other options have some serious side effects. If I go up at the rate of 5k per day, I would be at 348 by the time they draw my blood and then we still have to wait for weeks to get the new T-cells back. I didn't want to ask Dr. Stephens if there is a limit to enter the study! I've been up to 585k before, but don't want to do that again!

City of Hope in California said I can have a consultation on January 27th. I'm waiting to see if they could beat the February 17th date for the initial blood draw or not. It's a race!

I also had such pain in my left arm this week that I had an ultra-sound to see if I had a blood clot. No, I don't. It seems like the pain is from the radiation. I have to hold my arms above my head in a very uncomfortable position, and it has become unbearable. In the meantime, I finished the radiation on my left flank and we've cancelled the radiation on my right flank, as there is a limit to having radiation before CAR-T. I won't be sorry not to be tortured anymore on the radiation table!

In an attempt to help Ed have a life while Judy sleeps (which is quite often), Brittany and John are introducing him to Sea of Thieves, a game in which you can learn to express your inner pirate. It has been fun for him, although he thinks he's a pretty pathetic excuse for a swashbuckler! It is a group game, and he even had to buy his own microphone headset to join in on the fun! 

Last recording and Stake Conference

It's a wrap-wrap! We finished up with all our Christmas recording Thursday night. Ed even directed the last few notes as he monitored the input.

Our last recording was of Ellis and Marti Nuttall singing  Il est né,le divin Enfant. 

Brittany's in-laws both speak French and have nice voices, and we've been trying to record them for a couple of years now, so, it was nice to finally do it! 

On Sunday we to watch Stake Conference on TV! They had a special link for shut-ins. That would be me!

I don't have the strength to sit in a chair for two hours, and Ed was lucky enough to be married to a shut-in, so we holed up together on a very snowy day to watch church together!

My WBC had gone up to 153 on Thursday. Not great, but the rate of acceleration has slowed down.

T Minus ?

We resumed our secret life at Huntsman Cancer Hospital again this week. We have appointments every day (mostly radiation on my giant nodule in my back), and sometimes two appointments! I got a nice beaded bracelet from Beads for Cancer. Another nice freebie to cheer us up in the waiting room.

On Monday we stopped by to see mom between appointments. She is doing great.

Her back yard is a mess. They finally started work on her new garage. Hopefully, it will be finished before we get any serious storms!

We had some funny snow melt in my back yard. It feels like a Salvador Dali painting. All askew, just like my life.

My new doctor, Dr. Stephens, is very enthusiastic about starting me on a CAR-T trial. Unfortunately, the lab in Washington that processes the T-cells is shut down right now, as they had an infection in a sample and are investigating what happened. The lab (Juno) says they will be back up the last week of January. In the meantime, we can see if I could be one of the first new patients when they start up again.

Sadly, my WBC has continued to rise and was 141 on Monday. All that hard work last year, blown in a few days! I continue on my new drug, Idelalisib, and it may start working soon. Or not. It might not have controlled by white count, but it has made me very tired. I have a hard time doing anything productive now. Fortunately, Ed is stepping into his old role and bringing me food on a regular basis!

Plan B  is to go to another hospital whose CAR-T lab is not shut down. The City of Hope (a well-renowned hospital in the Los Angeles area) creates their treatment in-house. We have contacted them and they will be calling me today or tomorrow to arrange a consultation. I wonder if they realize speed is of the essence here. We are likely to take whichever hospital comes through for us first. If my current drug is not working, Dr. Stephens has a few more ideas to help keep my cancer in control while we wait.

I feel like a ticking time bomb with an uncertain clock. We just have to beat the clock, but we don't know when the clock will reach its critical point! Hang on for more thrills and chills on the cancer roller coaster!

New Year's Day

We took pictures for next year's CD today. It snowed all day providing both a challenge and a nice back drop.

We also took pictures of the kids, which was a lot of work, but less so, as we took them separate from us!

They're pretty cute!

After picture taking there was time for the kids to play outside in the snow. Clementine's gloves were very soon covered in snow!

Hugo had a hard time navigating the deep snow.

Amanda enjoyed taking Hugo for a ride on the sled! I wished I had the energy to join them!

Mabel did a few runs with the other kids, but really enjoyed her solo run down he hill!

They came in exhausted and ready to warm themselves by the fire and drink a little hot chocolate!