Transplant Day 20; MDA Residency Day 30:

Hey Folks
 

Luke’s blood counts still are still recovering.  He’s getting daily injections of nupogin to accelerate white blood cell recovery and he’s still getting blood and/or platelets every day.  With the holiday's MDA is low on donations so if you have the time to stop by MDA to donate Luke's patient number is 776302.    

They are trying to move Luke off of IV drugs to oral.  Tacro which is the primary drug used to combat GTHD has been problematic.  When they went to oral on his Tacro the level shot way.  Higher levels present as headaches which Luke is experiencing. 

They think the Tacro level increase is due to how the gut absorbs the oral drugs vs. IV.  Hoping they can get it adjusted in the next day or two.  To dealing with the headache it's been a dark room for the past 48 hours and they bumped his dilaudid and merinol back up.

Some nausea yesterday and last night.  Today was better but not much appetite.  Temperature has been bouncing around.  Being told that is typical.  When it spikes Tylenol has brought it back down.   To be sure nothing is going on they are doing blood cultures and took a chest x-ray.           

Looks like Luke will over shoot the 30 days of residency.  The best guess on discharge is early next week.

Thank God for the Breaking Bad marathon – TV has been on AMC for 48 hours straight.         

Happy New Year

Transplant +18

Greetings from Texas and MD Anderson.  We hope everyone had a safe and Merry Christmas. 

Updates on the past couple of days:

We spent the day with Luke, of course, in matching green plaid pajamas and Christmas hats.  Luke's counts continue to improve and the doctors are very happy with how he's doing, there is talk of releasing him early to mid to next week...so keep  your fingers crossed.  Today (Saturday) he got some blood (red blood cells) and could have used some platelets but there aren't any available....

MD ANDERSON IS IN DESEPERATE NEED OF PLATELETS!!!  IF YOU CAN DONATE PLEASE CALL THE MDACC BLOODBANK @ 713-792-7777.  There are two locations, one at the main MDACC in the Mays Clinic Building, 2nd Floor and 2555 Holly Hall (just east of Alameda).  Donating platelets takes an appointment, but just read blood cells you can walk-in.  You can't donate if you have any fever, have been tattooed or pierced recently, or traveled to exotic malaria ridden places in the past year....there are some other restrictions as well, more can be learned here: MD Anderson Blood Bank

Luke is pretty tired and resting today, he is running a low grade fever but nothing that the staff is overly concerned about.  His mouth sores continue to improve and they have transitioned all of his IV medications to oral (pills)....another step on the road to home. 

We are ready to have him home, and there is a large black dog who misses him terribly too.  Visitors are always welcome, just not if you have been sick or around those that are sick.

Thanks!

EB

Transplant Day +15

Everyone Merry Xmas! Enjoy the day,

On this end we are thankful for so much.  Luke is coming along.  Counts are up, throat is feeling better.

For anyone that is not familiar with a pain medication bolus the result is to the right!








Eric and Buffie paid a visit today and brought
more hats. 

Doctor T is happy with Luke's progress  She expects he will have another week in residence but to quote the Duck guys she is "happy, happy, happy".  Evidence of her happiness is to the right/  We are blessed with the support of family, friends and MDA.

That is it for now.  Thank you to everyone who has supported Luke, Light the Night, or donated blood! Have a great Christmas and all the best in the New Year.    

Transplant Day +13

Trends are good.  White Blood Count (WBC) is 500 (normal is 4,000-11,000).  Doctors need to see an Absolute Neutrophil Count (ANC ) count of 0.5 for three days before they will think about discharge.  ANC is a measure of the number of neutrophil granulocytes in the blood.  Neutrophils are a type of white cells that fight against infection. The ANC is the fraction of mature and immature neutrophils in the WBC.   Got more platelets today, that's around 7 days in a row..      

After white count come back docs will start watching for Graft vs. Host Disease (GVHD). White cells go after what they think are foreign cells.  As Luke now has Kendall's white cells the wait and see is whether those white cells will look at Luke's own cells as foreign.  GVHD most often affects the digestive tract, skin and liver.  

Hair is gone, scalp is well polished.  Mouth sores are still there.  It's hard to eat but nutritionist is not worried as when white counts come up sores should heal quickly. 

Kate spent yesterday baking cookies for the nursing staff.  Kate is well known for here baking,  after delivery of the cookies she caught a few of the nurses hording and had to nip that in the bud.

For those looking for an Xmas gift, the new line of Breaking Bad themed Lego is popular with
Luke.      







One last note with the sisters being home and not having Luke around to fulfill their passion for dress up, poor Traveler is paying the price. 

Luck Feukemia!

Transplant Day +11

Trends are good.  White count inched up to 0.2.  It is not engraftment but doctors are happy, happy, happy.  Luke gets a dose of chemo (methotrexate) today which will probably bring his white count back to zero but doctors have indicated he should start seeing improvement in the next 48 hours.  Counts are still very depressed  He received a unit of platelets and two units of blood yesterday and is getting platelets again today.     

Mouth, throat and stomach remain extremely.  It's hard to swallow and has a lot of blood in his mouth.  He's not sleeping well and trying to eat is painful so not much food consumption the past few days.  His pain med PCA pump dosage is pretty well maxed out.  Every two hours he able to get a bolus (medical term for courtesy hit of pain meds) administered by his nurse.  He has started to time the bolus with when he has to take his oral meds.

Temperature has bumped up a couple of times but it was controlled by Tylenol.  He has a rash on his arms, legs and groin but it not causing an itching problem and Doctors are attributing it to pre-engraftment.

Luke is keeping up with this exercise.  he did a record high 6 laps this morning, not sure were he is finding the energy.  

Visitors in the past 48 hours were Ron Graham who is the father of a friend of the girls.  He had a transplant one year ago and is doing great.  Also stopping by was Sam Morrow.  The two play a little bit of the steel pedal and guitar together.
  

Thanking this one step at a time.  Onward to engraftment.           

Hair finally took a hit.  Severed follicles were put to good use.

Be well.

    

Transplant Day +9

The past 48 hours has been a roller coaster.  Yesterday Luke had throat and stomach pain from ulcers.  The dilaudid pump dosage was increased 4X from where it was started on Monday.  With the difficultly he was having swallowing they changed what oral meds they could to IV.  His IV pole is now loaded with two power units and 6 pumps. 
He also has a suction line to clear his throat.  Without saying eating has been minimal.   

The chemo Luke received targets the cells that divide the quickest so bone marrow, hair and digestive tract get hit the hardest.  True to that hair is being impacted.  Strange but true, Luke"s hair growth seems to have gone in reverse and he now resembles the members of ZZ top.  

Since Sunday he has received a daily unit of either platelets or blood.  Without bone marrow Luke s not producing his own blood cells so whatever of his blood cells that die off need to be replaced by transfused cells.  Until he engrafts transfusions will likely be a daily event.  

Last night for the first time since transplant he spiked a temperature so they took blood cultures.   Cultures take +24 hours so things are on hold.  This afternoon Luke broke out in a rash on both legs and panic set in as the skin is an organ that often rejects the transplant.  The doctors were called in but the news was encouraging , a rash on the legs is often a precursor to engraftment and Luke starting to produce his own white cells from the transplanted bone marrow.  If that is the case WOW.  Luke is still feeling like crap but hearing that the leg rash was potentially a good sign was a big positive. 

Luke has all of our respect the way he is hanging in there.  There is absolutely no complaining.  He gets up on his own initiative 2-3 times a day and does his hallway laps and religiously pulls out the floating ball to keep his lungs in shape.

Kendall is back in town for a few days.  Leaving he hospital this evening she came upon a woman in the parking garage that had fallen and could not get up.  The Nurse Practitioner in he kick in and she wheel chaired the woman to the ER for treatment.  Nothing was seriously wrong with the woman but she was grateful to have been found by someone that could help her.               

Transplant +7

Picture this. A darkened hospital room.  Patient in pain and drowsy from narcotics. Two young attractive child life therapists silently enter the room.  They nudge Luke and ask "Luke what do you what for Xmas?".  He slowly opens his eyes and the question gets repeated "Luke what do you want for Xmas?" but this time they add "Luke listen to us, the MDA pediatric floor has a donor that is financially well that wishes to grant cancer patients their Christmas wish." 

Upon hearing the last statement Luke was aroused from his narcotic stupor and groggily rambled off guitar strings and song books to which the child life gals responded, "Luke, you did not hear us, there is a donor out there that is in a position to grant you your fondest wish, think about this, do not be shy".

Luke thought for a few seconds and replied "please let me think about this.  May I suggest you give me your email address you will have my list in an hour".  Well it took three hours for Luke to prepare his list and after seeing the child life rep in the hall who told him she has not received his email, the list was sent! 

WHAT A WAKE UP CALL!  Don't know what was on the list but there may be a Santa Clause!.

Now to the mundane, aside from producing an Xmas list, medically Luke kept busy.  Counts continue to drop.  No white cell, platelets at 20 vs 140 normal, hemoglobin at 8 vs. 16 normal.   He got another unit of platelets. upped his pain meds and started neupogen to accelerate white blood cell production.  Continuing with the tacro to combat organ rejection.  Gut pain is the biggest issue.  Tossed a little bit of blood up this morning but doctors were not concerned, as torn up as Luke's gut is some blood is expected.  Luke is starting to loose his hair.  Tired.  Has some appetite but the mouth sores make eating difficult.

Other than preparing an Xmas list Luke tossed the pigskin with Kareem Jackson from the Texans (as before Luke is the one in the glasses).  Luke also built a ginger bread house with his new best friend Jessie.  Jessie is 6 years old and Luke shared construction of his GB house with her as they ran out of kits before Jessie arrived.
  

Transplant Day 5

Many of the transplant issues Luke was told about are starting to show up.  The major one is the digestive tract.  Luke is having a lot of pain from sores in his mouth, esophagus and stomach.  Without white cells the lining of his gut is blistering up and becoming inflamed.  

This is consistent with what everyone he has talked to has told him, starting day 4 or 5 until he starts producing white cell (~day 14) is a difficult time.  He is dealing with nausea, but for now the itching and headache have seem to have taken a back seat.     

It's dilaudid for the pain.  Blood counts have tanked.  Platelet transfusions have started.  Expect that red cells won't be far behind.  In addition to all the IV meds breakfast is at least a dozen pills.  

Luke was able to eat soft food last night and keep it down. Not a lot of sleep last night.

Eric came by with a few fun hats.  Dr. Lee from transplant said by mid week the natural head cover will probably be gone and Luke may want a hat. 

 

 

Friday Luke helped out the music therapist and played Xmas songs for the pediatric floor.  Show lasted about 90 minutes and it was a great diversion for Luke and the kids.      

After a great deal of contemplation and thought Dr. Lee volunteered that Luke reminded him of David Crowder.  I'll let you be the judge.            

Transplant Day 2

Wow, life is good.  Things at MDA are going very well.  As expected Luke's blood counts are dropping, white count is leading the way.  Luke is feeling good, eating and staying active.  His only complaints are a headache, queasy stomach and mouth sores.   Hair has not been displaced, but its coming.   

Luke was active yesterday.  Each year the Lombardi award candidates and Miss Texas visit MDA. In past years Luke got in his tux and attended the actual award ceremony.  This year it was just a meet and greet on floor 9 at MDA.  Luke is the one with the glasses.  Adri - you're over and above Miss Texas!

Tony and Kendall, the bone marrow machine, returned to Denver this afternoon.  Kendall was pretty sore yesterday.  She did decline an offer to put a picture of her two back side puncture wounds on the blog.  In the end, no pun intended, we were blessed to have a match in the family with an employer that gave the the flexibility to come to Houston.  Tony and Kens, we love you guys.  

Beth and Kate will remain to cater to Luke's every whim and desire, but if Luke keeps doing as well as he is that may be short lived. 

Luke has been transplanted!

For as little as she is Kendall provided an abundance of bone marrow. The Doctor harvested over a liter. Kendall was under for an hour and in the recovery room until 3.  She made it up to see Luke and then headed home to sleep..  She is going to be sore but  has a smile on her face




Luke’s transplant started at 2 PM.  The bone marrow was blessed and then hung. The bone marrow was drip feed so it took over 5 hours to get it all into his veins. The transplant went well. There were no signs of an allergic reaction which is a good start. Counts are starting to drop with white cells taking the biggest hit. Luke’s coloring is on the pale side but that’s to be expected. The only change reported by Luke after have received Kendall’s bone marrow was the urge to pee from the seated position ……….……go figure

.


Luke is in trouble the next few weeks having his three sisters in Houston. Like when he was a mere child his sisters would dress him up. Well dressing him up has continued! 

 

 We have been blessed!

 

It's T Day

Here we go; it's time for a BMT! Kendall had an eventful day yesterday. Her original draw for her t-cells was contaminated in the lab requiring them to draw more t-cells yesterday. Before the draw her hemoglobin was <9, 14-16 is normal. After they removed the equivalent of another unit of blood from Kendall’s veins she got a bit pale and light headed requiring the administration of smelling salts and cold compresses. Following recovery Tony wheel chaired Kens to the car and we deposited her on the home front couch for an afternoon nap. Kendall feasted on a gourmet dinner prepared by Chef Tony. Dinner was followed by ice cream and what was described as a rather sensual foot massage after which Kendall returned to full vitality. It was an early morning. Kendall checked in at the OR at 5:30. The procedure started at 8:22 and is expected to take two hours. After turning her hip bone into what was described as swiss cheese drawing the bone marrow out, Kendall will get the two units of the blood MDA relieved her of last week. Luke had a good day. Played guitar with the music therapist, ate well and toured the floor pulling his IV’s. He was started on the drugs to impede his cells from doing combat with Kendall’s bone marrow. He was told that he will be on those drugs for at least a year. Kate arrived Sunday. She bonded with the Lukester and spent the night in his room. Kate and Luke remained sound asleep well after our 5:30 arrival. As of yet we do not have a time for transplant but will keep you posted. Luck Feukemia!

Transplant T minus (-) two days and counting

Chemo is done.  The last two days of chemo were rough.  They went start of chemo at 4:30 am, headache onset at 5:30 and nausea at 5:45, close the blinds and turn out the lights and let Luke sleep between "ralphs".  By evening he was able to keep light food down.  Despite dealing with the effects of chemo feeling he is being diligent with getting up and walking the halls.  Friday evening some friends stopped by and Luke rallied to spend some time with them.  Last night he got a good nights sleep.........on to transplant

Thanks to every one that came by to donate.  The statistics were 100 chick-fil-a , 8 large pizzas and 3 dozen kolaches consumed.  I don't have the official totals on blood but I am sure you guys delivered every unit MDA expected.   

It's Sunday, a day of rest in the biblical sense and for the tranplantee.  The medical activities should be limited.  With chemo behind him Luke watch his counts drop and get started on the transplant meds.  A big one is tacrolimus to help minimize graft to host disease (GTHD)

Kate is coming in town this evening.  We are sending Kendall to the spa (she wishes) for pampering (nails, hair, massage, botox etc) and feeding her whatever he heart desires (more likely) in preparation for the removal of a liter of her bone marrow Tuesday morning.

Hey good news for Todd, he's the 25 year old guest at MDA down the hall from Luke.  He's at day +14 after transplant and white cells have started to show up!  He has a long way to go but that is a significant milestone.

NO MORE CHEMO!  DOUBLE YAHOO, YAHOO!

Take care

Dave             

Transfusion -4 days and counting

Things are going well.  Luke's chemo starts at 4:30 AM.  It takes an hour for one and two hours for the other so round 3 of 4 has been delivered as this is being typed.  The onset of the nausea is coming sooner after each round but by noon yesterday he was doing ok and was active the rest of the afternoon with his steel pedal, guitar, walks and lung calisthenics. 

He thinks his hair is already departing from is head and face surfaces and was talking like the hair clippers were going to visit today.  anyone wait a hair ball souvenir?  . 

As of yesterday after one day of chemo counts were not showing any change.  I don't know for sure but expect he will start to see a drop this weekend. 

Tony and Beth have arrived to we're rotating faces in the room. 

Looking forward to seeing some of you at the blood drive tomorrow. 

Luck Feukemia!          

Transplant -7 Days

Today was chemo day 1.  Three more days to go.  Luke tolerated the day well.  He felt a little funky in the afternoon and had a headache but no nausea, yahoo!. 

Attitude is great.  He is walking the hallways, playing guitar and working on lung function to keep the pneumonia at abeyance.  

Tony and Beth arrive in town tomorrow evening so Luke will have two new sources of irritation.  

Have a trivia question for you.  What cancer patient and his dog are pictured in the 20' mural on the second floor at MDA?  Hint - the dog is black.     

Blood drive is Saturday.  Walk ins are welcome.  After 2:30 would be the best time for walk ins but no one will be turned away.  When you mix holidays and cancer blood supply takes a hit and MDA needs all the platelets and red blood they can get. 

Take care

Dave

Transplant -9 days

I was a good day.  Luke is ready to get through this; his spirits are high and his appetite is good.

Accomplishments today included playing an engagement with the music therapist for the younger pediatric patients (I may of misunderstood what I was told but I believe the highlight of gig was an original Christmas carol about noodles) followed by the creation of an Xmas wreath for what has been renamed the "housepickle" room door.

The steel pedal is up and operating and no complaints from the hall.

Kendall will be staying in Houston until after they draw her bone marrow. She is already down three units of blood.  Over a five day period last week they withdrew 2 units of blood to transfuse back to her after they take her bone marrow. They also pulled the equivalent of a unit of blood harvesting her t-cells. Luke is going to participate in a clinical trial involving t-cells. They are going to use Kendall's t-cell which will be genetically modified to kill any cancer cells which may remain in Luke's system after the BMT.

Beth and Kate will be arriving in the next few days so Luke needs to get conditioned for mothering  as the Gayle and 3 sister can deliver a heavy dose.  

Will see what BMT -8 days brings tomorrow.. 
 

It's Day Minus 10

After 5 pm mass we headed to MDA and Luke was admitted. Upon arrival his singular priority was to set up his steel pedal guitar. He was started on IV fluids. Tomorrow and Tuesday it's continued IV's to optimize his system chemistry for chemo and further testing. The major testing is to check his sensitivity to one of the two chemo's he will be given to kill off his bone marrow. The one chemo can cause seizures. Probability is low but none the less they want to check. Wednesday will be the first of four consecutive days of chemo. Last day of chemo will be Saturday after which they let the chemo do its thing for two more days. Tuesday the 10th Luke will receive Kendall's bone marrow. The 10th is day "0" on the bone marrow transplant calendar. Everything after Tuesday is referenced to day zero. After the chemo Luke will have no ability to make his own blood cells, red, white or platelets. With no ability to make blood cells Luke will receive platelet and red cells transfusions. The hope is that within 10-14 days of receiving Kendall's bone marrow he will start producing white blood cells from the transplant. Along with the production of blood cells, they will also be looking for signs of graft to host disease. Its the same issue with organ transplants, the body sees something foreign and begins to reject the transplanted organ. For a BMT they watch the liver, kidneys and digestive system. It's going to be a long process. The transplant team has a 100 day calendar. For this initial phase Luke will probably be in MDA until after the 1st of the year. He is going to be in isolation. Mask and gloves and avoiding physical contact with everyone. Following discharge he's been told to expect being in clinic 3 days a week for a month. After transplant Luke has been told repeatedly moving around is critical. The last thing they want to see is pneumonia and the best way to keep that from happening is to push the exercise. This evening we meet Todd. He's 25 and received his BMT November 20. His donor was his brother. He confirmed chemo was a bitch and with no blood cell production energy level sucks. He was getting after it though as we met him walking the halls. Luke is ready to go. He will be active on Face Book. His email address is lucasdnovick@gamil.com. Please feel free to contact him. If you want to send him anything your can send to or drop it by the house and I will get it down to MDA. Take care and Luck Feukemia Dave