Luke is responding to chemo

Yesterday Luke had good news, his blast cells are down to 3%.  Two weeks ago the blast cells in Luke's bone marrow were at 73%.  The leukemia is responding to the chemo.   

Leukemia shuts down the production of blood cells in the bone marrow.  Blast cells in the bone marrow are undifferentiated cells that the leukemia prevents from "evolving" into white or red blood cells.  Blast cells are essentially dead weight in Luke's system. 

Remission will be when no blast cells show up on the bone marrow.  Dr Wells is targeting for remission in 30 days from the start of chemo.  Once Luke is in remmission the goal will be to get rid of all the remaining leukemia cells hiding out in body.  The path forward to achieving that goal has yet to be determined.  It will either be another long term chemo regime to try to kill off all luekemia cells in the body or a bone marrow transplant provided an acceptable match can be found.. 

Monday was a long day.  Luke was at MDA from 9 until 4.  They drew bone marrow, did an LP and he got methotrexate, vincristine and erwina.  Wednesday he saw Dr. Wells and received erwinia but was home by noon.  Blood counts are relatively unchanged; white cells are at essentially 0%, but platelets are still above the threshhold for being transfused. 

Luke is tired but holding up.  Most of the time on chemo days is couch time.  For now the meds they have him on are keeping the nausa at bay.  Chemo is taking a toll on the hair.          

We're having a blood drive for MD Anderson on April 13th.  If you can donate blood or platelets please send us an email at Lukesblood@earthlink.net and the time you would like to donate.   

Buffy, Cindy and Peggy.......thanks.  

It's been two weeks since we learned Luke had relapsed.  Overall Luke is doing ok and his spirits are good .  He handled the erwinia pretty well this week.  He's not getting any chemo over the weekend. 

Monday will likely be a long day.  After labs are drawn Luke will meet with his oncologist.  After meeting with Dr. Wells the fun starts.  Luke will have bone marrow taken to check on blast cells.  Following the bone marrow he is scheduled for an LP, methotrexate and then erwinia. 

A bright spot this week is the appetite.  The steroids have kicked in so Luke is eating big and frequently.  Three meals a day and major consumption between meals. 

The chemo has taken Luke's white count down to zero so infection is a big concern. If is temperature goes above 101 F he will be heading to MDA.  His  platelets are dropping.  Eventually the platelets will drop to a level that Luke will need to be transfused.  I'd be surprised if he makes it through this week without needing to be transfused. 

Luke's sister Kate was here for the week.  She returned to KC this morning and will be back to teaching Monday.  Mom and Dad will go-it-alone this week.
Thanks to everyone that dropped to visit and for the meals.   No having to deal with preparing a meal for those days was a God send. 

There is a new member in the household.  Today we brought
home Traveler a 5 1/2 year old black lab.  We had to put Bailey down in January and Luke had been wanting another dog.  Traveler's was in a household of 10 and was having issues with a younger sibling in the household.  Traveler's mom had learned about Luke's and thought Traveler would be an ideal mate for him.  Luke felt well enough today to drive up to Elgin, Texas to meet Traveler and Traveler came back with us to Houston to see if we're a good match for Traveler.        

Hey Luke continues to hang in there. 

Chemo Saturday was uneventful.  Yesterday's had a bit more of an impact.  It left Luke feeling a little puny and he retired early.  Today he's bounced back and is doing good.  He gets hit again tomorrow and meets with Dr. Wells. 

Blood counts are holding up.  White count is way down but platelets are in the 100K range. 

Luke and his appetite are on steroids.  Eating +3 meals a day. 

Adam, Alex and Mike thanks for stopping in and sponsoring the impromptu crawfish boil for Luke.  Brian and family thank you for the lasagna.  Father Bravo, the visit was appreciated.  

Luke home 

Luke was discharged yesterday.  Starting this morning he is back down at MDA for out-patient chemo every other day through Friday. 

Overall he is doing ok.  Infection needs to watched for as the white cell count is way down.  Moving around much more at home than in the hospital.  Some appetite. 

Nancy thanks for the soup, its was delicious. 

Barb and Paul stopped by.  Kate arrived last night.   

DN 

Thursday 03/14

Good morning from H-town.  Luke is continuing with chemo sometime today, he had an "off" day yesterday, no chemo just antibiotics and pills.  He slept most of the day and slowly returned texts and emails---if you didn't hear from him, and it is urgent, feel free to reach out to any of the family, if he's napping he'll get to it eventually. 

The always awesome, Mr. Michael Hannon, came to visit which seemed to perk Luke up.  His runner-up mom, Traci, also stopped by, which always makes Luke smile.    

We watched the announcement from the conclave in the Vatican, Luke decided that if left up to him, the papal name would've been Boris----it is also a great name (the Boris part, not Pope) for a new rescue dog (hint hint hint Dad).   

The news this morning is that Luke should be (fingers crossed) discharged tomorrow!!!!  He will have to be back at MDA every other day for chemo, but there is nothing better than being in your own bed and getting rid of beeping machines and blood draws at 4am.

Loads of gratitude for all of your love and support!  In addition to everything that you do for Luke, MDA is always in need of blood---please donate at an MDA facility, there are two in the medical center (MD Anderson - How/Where You Can Donate Blood). 
The Novick Fam
(EB)


 

Tuesday.....an ok day!

The best news was the spinal fluid was clear, the leukemia does not appear to have migrated north.  Over the months ahead they will continue to sample spinal fluid and give chemo in the spine to keep the cancer out of the brain.  More good news was that for the first time since arriving Luke did not spike a temperature in the evening or during the night.  Blood counts will start to drop with the start of chemo.  For now counts are low but ok. 

Luke started on prednisone.  Appetite will pick up and with the water retention so will Luke’s resemblance to the Pillsbury Dough Boy.   

Luke is doing.  For most of the afternoon and evening the nausea kicked in. Not much of an appetite.  He did occasionally check text messages and emails which generated a few smiles.  By late evening he felt well enough to disconnect from the pumps and get into the shower. 

The IV’s and pills are endless.  Along with chemo he is getting deluged with antibiotics, stuff for nausea and a lot of meds to enhance and address the adverse effects of the chemo. It seems like a new IV bag is hung every hour around the clock. Chemo wise he got Vincristine and Doxorubin Monday .  Yesterday it was Erwinia.  I think today the Erwinia gets repeated. 

Ian, who heads up the Arts in Medicine for pediatrics, stopped by.  Luke and Ian share the common bond of music.  Ian was on the floor for a clinic and invited Luke to drop by and hang out.  At the time Luke was feeling the chemo effect and had to pass. 

Kendall is heading back to Denver today.  Beth remains in Houston able to work here from her laptop and phone.  Kate will arrive on Friday when her school starts their spring break.  Gayle returned home for the first time since Saturday morning.  Hopefully had a good tub soak and a glass of wine.  She'll be back down to MDA this morning.  

Round 1......... 

After speaking with Dr. Wells yesterday the family went down to the waiting area for guitar therapy.  Luke played while Gayle and the girls colored (crayons and coloring books - just one of the benefits of the pediatric floor) .

Early evening Luke experienced a lot of pain and spiked a temperature. A Nurse Practitioner in the area stepped up and gave the attending a crash course in pain management (it is great to have those NP's on family staff).  By 9 things were under control.  Before the evening's chemical cocktails Luke had a hors d'oeuvre for nausea.  The first chemo bag was hung by the chimney with care (whoops - seasonal mix-up), the second cocktail followed 30 minutes later.  Nothing new with the cocktails, Luke has indulged in both on his previous stays. 

Luke had a late dinner and retired for the night.

Dr. Wells is going to hammer the asshat over the next 30 days.  Luke is ready for the fight.  Please let him know he is in your thoughts and prayers.  Don't hesitate to comment on the blog, after completing 3.3649 semesters of college he reads very well.  He is frequently on Facebook, if you see him there say hello.  His email is lucasdnovick@gmail.com, drop him a note, a joke, a picture or any irrelevant information (the more irrelevant the better)....we love laugh out loud vidoes.  If you would like to visit, please call first as the activities tend to change and with chemo starting he may not be up for company.     

Dave

Bring on the drugs....

Dr. Wells came by and met with Luke and went over the plan. He will start chemo tonight. He will remain in the hospital until Friday, at least.

Luke has his phone and laptop and is texting, emailing and on Facebook. I have no idea how he will react to the different drugs this time, so feel free to contact dad, mom, Kendall or me as needed, keep in mind that he may not respond if he's resting or in the middle of treatment (or just sitting being awesome).

Much love,

EB

No real news yet. We meet with Dr. Wells at 4pm.

Dr. Wells did come by to say he was going to do Luke's LP and that coming back from vacation finding Luke here was not something he expected.  

The LP was done and the PIC is in so we are waiting for Luke to return to his room.  Coming out of the anesthetic it was reported Luke mumbled something about wanting 72 virgins and a coke---that is a soda or a pop for those not in Texas. 

Patrick from the blood bank stopped by this morning.  He summed leukemia up.....its  a disease to which logic does not apply.  Why Luke, why now, we will never have an answer.

Other than the chemo, that was given intrathecal (directly into his spinal fluid) when they did the LP, other drugs have not started.  The first round is expected to start later today after we meet with Dr. Wells.  If the protocol is the same as 2009 Luke will probably be resident at MDA until Friday or Saturday.  

By the way Friday is National Asshat t-shirt day.  Send Luke a picture of you in your shirt @ lucasdnovick@gmail.com

Sunday about 2pm Houston time.  Overall a good night.  Spiked a temperature but they able to get in under control.  Head looked ok on CT scan.  Chest fluid is there but chest pain has eased up.   He was encouraged to walk halls laps (and did) to move the fluid in his lungs. 

Luke started a med today in preparation of starting chemo tomorrow.  What he got will minimize problems with the liver processing cell byproducts from chemo.   

Tomorrow Luke will get his PIC and they will do the LP.  Spinal fluid from the LP will tell the docs a lot.  While they have the needle in the spine they will inject chemo in the spine to get at any leukemia cells that might be in the brain.

Won't know where we go from here until meeting with Dr. Well's tomorrow.  Regardless the first step will be to get the cancer in remission with no blast cells showing up in his bone marrow.  In the bone marrow taken Friday the blast cells were at 73%.   Blast cells in his blood are around 4%.    

In Luke's first go-round with ALL a bone marrow transplant was presented as the protocol if he did not  respond to conventional chemo or relapsed a sort time after going into remission.    There is literature out there that patients that stay in remission for an extended period after chemo respond favorably to second round of conventional chemo.

Dr.Wells failed to relieve Luke of all his hair follicles last time around.  Will see if he is going to take that as a challenge and go after complete baldness this time...ha!    

Luke's spirits are good.  Brought a guitar down for him. Hasn't gotten the guitar  out yet but he did convince his nurse to remove the IV line in his left elbow so he can play. Attending came in with residences and saw the guitar.  Asked Luke if he knew "Alleluia" and said he would be back later with the expectation that Luke will play.



.    

Luke has been checked in to MDA.  He is dealing with multiple issues.  They are doing a CT of his head and chest today to confirm and/or rule out potential issues. His pain meds were upped and he a bit more comfortable. 

His oncologist is out of town so treatment is on hold until Monday.  He will get an LP first thing Monday to see if any cancer cells are in the brain and then we will meet with Dr. Wells to figure out where things go from here.  Kendal and Beth are in town so Luke is not lacking for attention and nagging.  

On February 26 Luke posted on his Facebook page "in remissions 4 years".... who would have thought he'd be in MDA two weeks later.    

Luke did not wait until Monday.  His temperature spiked last night and he is now resident in the MDA ER.  He has chest pain and an x-ray showed lung fluid.  They do not know if the fluid is that from the leukemia or pneumonia.  He is on antibiotics and pain meds and for now is  comfortable.  Admissions paperwork is being processed.  My guess is he will be here a few days. 

Dear All

This is not an email I ever expected to write, but today Luke found out his leukemia has returned.  He came home last week for spring break with a bad case of shingles that kept him on his back all week,  Yesterday he went in for his quarterly blood work at M D Anderson.  Blood work showed a low platelet count.  They did bone marrow today and found blast cells.  He meets with his oncologist Monday. 

As before please keep Luke in your thoughts and prayers. 

Dave and Gayle