Saturday, February 28: Luke 1 - Asshat 0

Hey all, Luke had a good but pretty uneventful week. For the most part we got to watch Luke eat which he continued to do with great acumen and voraciousness. As of Friday he had reached a massive 135 lbs.

From a treatment standpoint Luke ended the 28 day induction phase yesterday. Luke celebrated the occasion with one of his new MDA best friends (aka clinic nurse Brandie).

The induction period ended with blood and bone marrow samples and another lumbar puncture and chemo. Bone marrow was taken later than usual so we did not get results yesterday. Caught Luke relaxing some after his bone marrow and LP. Don't know where it came from but I just notice that dark mole on his left earlobe.

If Luke's blood and bone marrow results are good he will have a one week recovery period - so no chemo next week (yea!). The following week he will begin part one of the three part consolidation phase.

Part one of the consolidation phase is two months. Schedule and chemo will be significantly different from the induction phase. The primary purpose of the induction phase was to get rid of the blast cells in the bone marrow and blood. The consolidation phase chemo is designed to attack the DNA and RNA of the cancer producing cells and impede their ability to reproduce.

The schedule for chemo and the chemo given during the consolidation phase will be significantly different for the induction phase. Luke will get chemo over consecutive days. Chemo will take his blood count down to very low levels. He will be given time necessary for his blood count to recover and then he will get hit again. The chemo during this phase may initially require it being given inpatient as it is highly toxic on the kidneys and they will want him on IV to assure his kidneys are flushed.

Luke has weathered the induction phase well. He emerged with hair thinning but for the most part intact (when we met with his doctor on Wednesday he assured us that he would take care of Luke's hair over the next three weeks)

Kendall was here over last weekend and will be in town again next week. Jamie Bailey stopped by for an afternoon. Luke is looking forward to feeding on mudbugs this afternoon and playing a little guitar with Lakewood Forest's renowned Motley Rockers.

For those that have helped us out by providing meals thank you. They have been a blessing and are greatly appreciated.

home :(

I am heading home today but will be back again next week.

Luke has done so well over the last couple days. Yesterday we trimmed up his mohawk, went to buy him new shoes at the outlet mall (he can talk me into buying anything for him) and went to lunch- we also did a lap around the outlet malls to see if there was anything else he had to have. We went to dinner at "The Del" with mom and dad and came home and watched a movie.

Luke has started enjoying a little walk around the block after dinner but last night he and i managed a 2 mile walk with the dog!! It was great and the doctors and nurses say anytime he feels up to it walking around is what will help his bone marrow recover and his good cell counts come up faster.

Not much else going on, we have just been hanging out for a few days. Luke's finger tips are a bit numb which is a side effect of one of the chemo drugs and should subside over the next few months-he had his last dose of that med on Friday. He also stops his steroids (prednisone) on Thursday. He says he is not sure what he will do with his life once he doesn't have a "roidish" appetite or roid rage. Friday will be lab draws, bone marrow aspiration and spinal tap and then as long as he continues to have no cancer cells in his blood and none in his bone marrow and his white blood cell count and his ANC (absolute neutrophil count) are high enough (they have been) to take another hit they will start the new phase which is called consolidation- with new meds next week. So no chemo this week...YEAH!!!

We will be checking in and will let you all know what Friday has for us!! Thanks so much for all the love, prayers and support! Here is a HUGE praise...my dad had his follow up after his prostate cancer and surgery and his PSA (a blood test that is specific for prostate cancer) was undetectable!!!!! This simply means follow up in 6 months but no need for chemo or radiation on his end! We are so thankful for both Luke and dad to be doing so well...keep praying for NO CANCER CELLS!!
Love you all
Kendall

MDA

I got in town yesterday so Luke and I set out on our own this morning to make our way to MD Anderson for chemo-traffic is a bit different in Denver at 8:30 in the morning :) . Luke is very proud of his hair do and it is entertaining to watch peoples faces as he walks by or sits with a bunch of 4 and 5 year olds in the pediatric waiting room.

Just meds and lab draws today!! No spinal chemo or spinal tap or bone marrow aspiration. As long as everything continues to go as we expect next friday marks the end of the "induction phase". Luke will then get a week off and on to the next phase. (a week off = a week free of chemo, still has to go in for lab draws).

Time at the hospital took a bit longer than expected but it was great to just have brother and sister time, Luke was feeling great and, imagine this...he was hungry, so after chemo we headed to the galleria to "combat his hunger". We also (sorry parents) stopped and got Luke some new earrings on the way home because his were taken by "T-dawg"(you know who you are) before his initial bone marrow aspiration and lumbar puncture.

Luke's white cell count (these help fight infection- normal is 4-10) was up to 2.2 today! He is still at huge risk for infection, but we are thankful he only stayed at 0.6 for a few days.

Thanks so much for all the prayers and words of encouragement it means so much to all of us! Luke's battle is just beginning...but he is on his way to getting his "parental allowed" tattoo on the day he is cured!
-Kendall

Monday February 15

Luke continues to do well. He tires easily but that's not unexpected. He was experiencing an irregular heart beat Sunday night. Doctors had him coming in Monday morning to check him out. They were sure what he was experiencing was from his blood pressure creeping up as an effect of chemo. Looking at his blood pressure since chemo started there was a definite upward trend. For now blood pressure is not at a level requiring medication - just going to watch salt in his diet.

Appetite is still good. He is experiencing some indigestion, but is countering that by eating slower or as he says savoring his food more.


Ian and Caroline visited Saturday and brought with them a load of valentines. It took Luke more than an hour to go through the valentines and they were appreciated! Caroline also provided salon services and provided Luke a little trim around the ears.

Luke's collection of dew-rags is growing, he now has dew-rags with matching bandannas for Bailey dog.

Update Friday 13

We had great news today. Luke is responding well to chemo. After 2 weeks of chemo bone marrow has gone from 91% blast cells (the bad guys) to 2%. The Docs would have been pleased with him getting to 10% blast cells. We won't get all the results back form the bone marrow until Monday but so far so good.

Along with bone marrow blood work was ok. Red blood cells did drop from the chemo but not to the point where he needs a transfusion.

Stomach is a little queasy after chemo but Luke is hanging in there. The afternoon was spent trying to beat the Wii version of the Godfather. He claims be was just about there and the game froze. Don't now if I believe that, but at this point will give him the benefit o the doubt.

Hunger...

I spoke with Luke tonight for a while, it is possible that any of you could find Luke digging through your pantries at 2am if ours is not adequately stocked. I believe Luke's words today were "Kendall, Dad and I went to HEB today and it was like walking into a candy store". He also commented on the entire meal he ate for dinner only to come home and scarf down a plate full of some "insanely delicious mexican food" that someone so graciously brought by. So whoever brought those over (i believe he told me they were enchiladas) should probably be prepared, he could have talked about them for hours!

The only downside is Luke said he felt a bit disgusted after he finished breakfast this morning, not because he was full, but because out of the 3 things my dad offered to make him he ended up eating all of them, plus two more items. The steroids have certainly turned our "i'll eat something, if you make it for me and bring it to me" brother into someone that would probably knock any of us out to get to the fridge first.

Not much else new, Luke's counts are looking exactly like they should. He has another bone marrow aspiration tomorrow to see where we stand with the leukemia cells in the bone marrow (this will mark the halfway point of the induction phase). He also gets all the IV and spinal chemo again. Continue to keep him in your thoughts and prayers. Keep praying that all goes well tomorrow...looking for less than 10% leukemia cells in his bone marrow! His hair is starting to thin on his arms and legs, not on his head yet but he is strongly considering shaving it anyway. Just waiting for his lucky clippers to be shipped over from Miami!

Love you all and thanks so much for the support!
-Kendall

Latest Clinic

Saw the Docs at MDA this morning. Blood work looks good! Platelets are up a little and red cells are only down a little. For now no need for a transfusion. Friday will be a big day. Bone marrow and another round of chemo are on the schedule. This will be the first time for bone marrow since he started treatment. Hoping to see a decrease in the number of blast cells in the bone marrow which would be an indication of how well he is responding to chemo.

Took Luke out to lunch Monday (Freebirds) and from there to a book store for some reading material. His friend John came over. They resurrected the K' NIX and assembled the giant ball machine. Stayed busy with the K'NIX until 8 PM. All the activity on Monday extracted a toll as Luke was pretty lame on Tuesday.

Appetite is that of an ogre, he eats anything (meat, vegetables or fruit) and in vast quantities. Three breakfast burritos, juice and melon for breakfast and then had to make an 11 am stop on the way home from MDA as Luke's unquenched, ravishing appetite demanded immediate attention. Hair remains attached, but he said there was a lot in the tub after his soak last night.

Talking to Luke...

I called home to see what was going on and Luke didn't want to talk about what he did but rather about what he ate....

Breakfast: "epic" scrambled eggs, with cheese and bacon and toast
Lunch: Freebirds - the "Monster" (all you Texans know the size of this) with a spinach tortilla, black beans, rice, steak, jack/cheddar mix cheese, pico, lettuce, mild and hot sauce, sour cream, red onions, mixed veggies, queso, ranch, and guacamole
Dinner: burger, beans, brocolli

And yet to be eaten, a midnight snack of leftover burrito.

He also mentioned that he and his friend John finished the K'Nex giant ball factory (picture to be added soon) and he made a trip to Barnes & Noble to buy some non-fiction books, apparently he doesn't read fiction.

MD Anderson ______ Center

Hi All...So I'm back on the west coast, not in San Francisco but in Portland, my home away from my San Francisco home these days. Dad is right, I counted the number of days I've spent in my own bed since I went home for Christmas and its 7. Crazy. People ask me where I live and I've started saying my clothing and posessions live in San Francisco, I live in a random hotel room at any major city on the west coast.

Kendall kind of beat me to it, but yesterday as I was packing up my suitcase Luke was sitting in the kitchen eating lunch #1 (lunch #2 came on the way to the airport in the form of Chick-Fil-A). I came in and sat on the kitchen counter and we were talking about music and his new obsession with food when he reached across and pulled out a sharpie and proceeded to scribble through the word cancer on his hospital bracelets. So now they all read MD Anderson _______ Center. He said he didn't want to see it and didn't want to identify with it because it wasn't going to be around much longer.

I'm so proud of him and cannot imagine being as strong or as brave as he is. Thank you all again for all of the support and kindness you have shown our family. I will be back in TX soon!

My favorite brother...

My mom told me yesterday that Luke crossed off the word cancer form his MD Anderson Cancer Hospital patient admission bracelet. When he was asked why he did it his response was "Because Cancer is not an option". I wanted to share a little with you guys about my experience with Bud (as we call him) over the last couple weeks.

When i was in the hospital room in Miami with Luke after the doctor told me of his diagnosis my thoughts were the same as most older sisters- why him? why the baby boy? why not me?. I think the answer to those questions is seen in his reason for scratching off the word cancer from his bracelet. Because to Luke cancer is not an option and I dont know that I, or any of us for that matter, would have that response. (Luke will be utterly disgusted with my grammar in this paragraph)

I will never forget Luke's face and response when I pulled up a chair next to his hospital bed in Miami to wake him up and tell him what the doctors had told me. I had tried so hard to pull it together but despite my efforts tears were cascading down my face as i looked at him sleeping peacefully knowing that this ugly malignancy had invaded his body. Luke rolled over in bed to find me sitting there with a pathetic smile and telling him that we needed to talk. I think he kinda knew right away as i had spent the last couple days (being the nurse I am) being brutally honest with him about the potential seriousness of the situation and what the possibilities were. I had even been trying to convince the doctors of his need for a bone marrow aspiration which after 4 days of no diagnosis I think Luke had started warming up to the idea as long as it provided some answers. As i explained to Luke what the tests had shown he was quiet and i asked him what was going through his mind his response was this..." Well Kendall, at least we know what the hell it is and now we can get the hell out of this damn place and fight it." He was so matter of fact, like cancer was not an option.

I cannot even begin to tell you all how proud of my baby brother I am. He has shown more courage and strength in the last 2 weeks (Although I am not sure if it has taken more courage to spend the 4 days straight in Miami with me at his bedside or to fight the cancer) than i could muster for one day. It has been the most difficult thing in the world for me to come back to Denver and continue my life here because I feel like my heart is in Houston and that is where i want to be every second of every day. I know for Luke's sanity I need to be here-this way he has one mom instead of 2 or with all the girls home 4.

Thanks so much for all of your support and love, you guys have been amazing. I just wanted to give you guys an idea of what leukemia is up against...a headstrong 19 year old who has no other option but to get back to Miami next year after kicking cancer ass!

Good day Saturday. For now the primary effect chemo is having on Luke's 6', 130 lb frame is he is always hungry and tired. He may not eat hugh portions but within an hour after eating he is in search of his next meal or snack.

Luke's oldest sister Beth returned to the San Fran yesterday and she is already missed. Returning to SF Beth will get no break from traveling. She leaves for a week in Portland. Since mid-December she has spent only eight days in SF.

Jessica and Kate stopped by to visit Luke yesterday. They came bearing gifts to enhance Luke's physical and psychological growth and development as an musician; a paddle ball to improve eye hand coordination, play-doh to promote hand and finger dexterity and an INSYNC poster for him to dream about becoming. Jessica and Kate agreed to our capturing their image to document their visit. The attached pic shows Luke spell bound listening to Jessica and Kate animated telling of their tales from their first semesters at UT and Trinity.

Saturday evening we were blessed to have Father Bravo visit our home. Father Bravo offered mass. We found this weeks readings emotional. The suffering of Job in the first reading contrasted with gospel where with "the whole town gathering at the door" God cured the sick and afflicted. After mass Father Bravo joined us for dinner, conversation and prayer. It was an evening that we treasure.

A thank you goes to the St. Agnes and Strake music departments for the bouquet of tulips and thoughtful note.

Luke's belongings are expected to arrive for Miami this week. He is anxious to fire up the Mesa Boogie and start making some noise.

Luke is doing well so feel free to come by. Due to the chemo Luke's white cell count is practically non-exisent which makes it hard for him to fight off ay infection So if you have a cold or do not feel well please hold off on visiting until any symptoms pass. An infection on any type has a strong chance of landing him back in the hospital.

Luke had a long day today. Right now he is on the couch watching the TV.

The day stated with a 6 AM departure for MDA and he arrived home just after 3 PM. Today's labs showed everything to be moving in the expected direction. After labs Luke got the second injection of chemo into his spine and then received more chemo via an IV.

Luke returned home dragging but hungry. The only problem with getting the tall skinny one nourishment was that our power went out around 4pm and did not come on until 8:30. We found out that a gas grill can do a pretty good job heating a casserole.

So far Luke is having no problems with the chemo. He has not had any of the adverse reactions that he had following the first round.

We are hoping Luke will be up for visitors over the weekend. If you have the time to stop by give the house (or his parents) a call and we will let you know if he is up to it. I have to repeat it, the comments to the blog and prayer site are read several times a day and are very much appreciated.

2nd chemo...

I spoke with Luke for a while last night and he is doing great! He is enjoying being home, although he is very aware of how bored he will get so he is already working on putting together a model plane or something of the sort. His second round of chemo is today, including the LP and intrathecal chemo (chemo into the spine). This should make for a long day at MD Anderson since he also gets the IV chemo. Lets just continue to pray that he responds as well and rebounds as quickly as he did with the first round.
Thanks so much for all the thoughts, prayers and support! You guys are all amazing and I know Luke loves hearing from everyone.

MDA Clinic February 4

Luke had a scheduled visit to the MDA clinic yesterday. His body is responding to the chemo as expected. There were no surprises with his lab work. Red cells are holding in there so no transfusion was needed. Platelets went up a little. So far high blood sugar is not a problem.

Friday is chemo day. First appointment is at 7:15. He gets his second injection in the spinal column, which they will knock him out for, and then an IV cocktail.

Overall Luke is doing fine. The prednisone has quite an effect on his appetite. He will have a meal and an hour later be craving food. To occupy his time and fight the boredom during the day we went to Hobby Lobby and he picked up a couple of plastic model kits to put together. He also has an standing offer from one of his friends to pull out the old K'nex sets and build the giant ferris wheel. Last night Matt Cooper came up from UH and he and Luke had a good visit.

Brandt curtain dropped by a basket from the LWF swim team. Thank you LWF swim team for thinking of Luke. He has his first dew-rag

The family also wants to thank the friends and neighbors who are helping us out with meals. The help is much appreciated, especially now when we are trying to settle into a routine.

An update on Kendall's "need for speed" when traveling I-70. She got back to Denver without incident or a another ticket.

If any one has the inclination, ask Luke's sister Kendall, the epitome of responsibility and Luke's personal nurse, just how fast her little ol' Subaru can assend the Rocky Mountains via I-70. Seems the Colorado Highway patrol does know........and was not too happy about it!

Kenz thanks for all the help. Luke misses his sis.

Home, Sweet Home!

Hi...So Luke is back at home. For now he will have clinic visits as an outpatient, starting tomorrow and again on Friday. Please feel free to visit, just call ahead of time to find out how he is feeling and if we're even at home.

Currently he's relaxing and complaining that he's starving----and I think it is a good thing if that is his biggest complaint. He is happy to say there are no more gay colors or arbitrary shapes on the walls and that he won't be woken up by nurses at 3am for labs.

Luke Evicted from MDA

It is a great day! Luke is coming home!

As of 1:05 PM they are in the car and on the way. I have been advised that there will be a slight detour on the way home as a stop at the nearest Taco Bell was requested. I guess between Miami and Houston 11 days of hospital food was a lot to handle.

Even though the Lukester will be commuting to MDA a couple of times a week to see the Docs and for chemo , it is a big step forward to be bringing him home!

Again thank you all for your thoughts and prayers. Go Luke!!!

So its Monday around lunch time. Kendall I just got to the hospital and Luke is doing great. Everyone has their laptops out, Luke is watching a ridiculous music video, Empire of the Sun, (thanks to cousin Pete). Kendall is trying to get some school work done and I'll be working on some BrainLAB stuff...it never ends.

Luke is doing really well today, he is getting the drug anti-asperaginase which has the potential to cause some icky reactions, but so far we've seen none of that. And, for the super good news (cross your fingers!) the staff brought in some discharge papers and if all goes well today and tonight he can go home tomorrow around lunchtime....woohoo! He will be able to continue his treatment as an outpatient which means multiple trips down to MDA each week, if he should get a fever he would have to be readmitted to the hospital.

Mom and I spent most of the day Sunday at MDA with Luke. He was given some blood because his hemoglobin count was low, with the transfusion they gave him some benadryl so he was out most of the day. Father Bravo from Strake came in and spent some time with all of us which was fantastic. His other visitors of the day were Braden, Britt Cotter and the Halbe's (Megan's parents). Megan sent a walrus (see picture) and it hasn't left his side yet. I know my Dad wrote that the first thing the he does is check for messages and check his blog, and it is true. If you are reading the blog there is a link at the end of every entry for comments, please leave them, we all love reading them. I also encourage everyone to write to him about what is going on in your life (aside from wishing him the best) and don't be afraid to ask him questions about his treatment.

Keep your fingers crossed that today continues to go well and Luke gets to go home tomorrow! He just walked back into his room from his stroll around the unit and I can tell that he is feeling much better, the guitar is now out of its case for the first time since he's been here. It is concert time.

Super Bowl Sunday

Luke and the folks at MDA are moving forward with chemo. So far no surprises. The white cell count is way low but stable from yesterday. Coming to MDA platelets were low but have stayed stable. Red blood cells have taken a hit so Luke will get red cells later today. Luke is not running a temp which is good.

The steroids are kicking in. The breakfast order was eggs, french toast, fruit, juice, bacon and oatmeal with most of that comsumed.

Had a lot of visitors yesterday and Luke was worn out. The room is small and it hard to get more than 2-3 in. In the short term Luke's condition may change by the day or even hour hour so please call before visiting.

The first thing Luke does when he turns on this computer is check Face Book and his blog. Luke (and his family) love to read your comments and messages. Please feel free to post additional comments on either of the sites sites - they are truely beneficial.