Leukemia: The Original Asshat

Bionic Man

2011-02-08T15:37:00.000-08:00

Luke is one half of a bionic man. Got his first hip today. All went well but it's been a long day. Arrived at 7 am and finally made it up to the floor at 4:30. Won't be getting him out of bed until tomorrow.

The best news is his right hip is painless for the first time in months. A big problem is being able to postion himseld so the left hip doesn't bother him. The happy juice has taken care of the discomfort for now. He will be in St Luke's until at least Thursday.

Regards

Dave and Gayle

THANKSGIVING DAY

2009-11-26T07:04:00.000-08:00

Happy Thanksgiving Everyone!
I just realized it has been quite some time since the blog has been updated. I assume everyone has figured out by now that no news is good news!
Luke continues to do well. Doctors are still adjusting his meds for his maintenance phase of chemotherapy. Looks as if it is going to take a while to get him at the proper levels of medication. Meanwhile he is enjoying not making the weekly trip to MDA, as he is now going for labs every other week.
He received the official word from THE U (Miami) this week that they are actually taking him back! He is counting the days until he gets back to school like a little kid waiting for Christmas.
Luke continues to play most Saturday nights at Rudy's. So if you are intown and need some cheap entertainment (although tips are encouraged!)stop on by.
While we are very thankful to all of the incredible doctors and nurses at MDA, we never could have made it through this past year without all of you! We are extremely thankful for your love, friendship and support. Today we have much to celebrate.

Luke is at it again

2009-10-21T18:20:00.001-07:00

Counts are back up. Threshold for re-starting chemo is an ANC of 750. He came in today at 870. Dr. Wells said its not abnormal for Luke's counts to take that long to recover. The chemo just wears the body down.

Luke started back with a dose of vincristine and will be taking mercaptopurine, methotrexate and a steroid orally. Methotrexate will be cut way back (a dose of 4 pills down from 16).

Luke is now the fatasshat as he is tipping the scales at 153 pounds. He has also taken up genealogy exploring his Lithuanian roots. Pictured is his research outfit.

STILL NEED BLOOD. if you can donate please get back to me. Have close to 30 slots to fill the afternoon of the 7th.

Finally Bailey says GO HURRICANES!

Wednesday October 13

2009-10-14T17:50:00.000-07:00

Luke had his counts check today and again failed. ANC dropped to 300 from around 700 hundred last week. He needs to have a minimum of 750 before they will start chemo again. Platelets dropped to around 60 from 70 last week (normal there is 140). Hemoglobin is low at around 7.

Luke was again assured response is typical for the start of maintenance. His blood did show a lot of immature white cells which will need to mature to kick up the ANC.

Luke's energy level is not great but he is not complaining about feeling bad.

That's the latest and greatest. Hopefully Luke will devote more time to studying this week and pass next weeks exam. With recieving a passing grade he can restart the chemo and get on with getting the right dose figured out.

Latest

2009-10-09T10:09:00.000-07:00

Luke had his counts checked Wednesday, two weeks after starting maintenance. As expected getting to the right chemo dose is going to take some trial and error. He feels fine but his ANC came back low and platelets dropped. He will be off all chemo for a week to let his counts recover to acceptable levels and will then start anew with a lower dose of chemo.

Expect he will be playing at Rudy's Saturday night for anyone wishing to attend.

Luke - High Maintenance Defined

2009-09-23T13:21:00.000-07:00

After +80 round trips to MDA, 20 units of blood, 4 units of platelets, 17 nights in the hospital and enduring over 200 needle sticks Luke has reached the maintenance phase of his treatment. Yahoo!

After getting blood last week Luke rebounded pretty well. Going to MDA today he was hoping to get another week off with no chemo and seemed disappointed that all blood count parameters were above the levels necessary to begin maintenance.

The objective of maintenance is to kill off any remaining cancer cells and not let the cancer establish another foothold as it did in January. He was told today that maintenance will last 30 months. It was previously thought that maintenance was only 24 months, but 24 months is for the female species. For reasons Dr. Wells said are not understood the male of the species does better being on maintenance for 30 to 36 months.

Today Luke's introduction to maintenance was methotrexate in the spine, vincristine IV and the start of five days of steroids. Over the next four weeks he will be taking mercaptopurine and methotrexate orally. Luke will be learning as he goes forward what maintenance will involve. The medications and dosages change throughout maintenance.

Dr Wells mission in life now is to keep Luke's bone marrow on the edge. He wants to keep the chemo at a level that will kill any remaining cancer cells while not compromising healthy cells. Luke will be getting his counts checked every other week. If the chemo dose he is receiving to too high, it gets reduced and blood checked again in two weeks. Dr. Wells expects it will take 3 months to get the chemo dose right as the starting dose ends up being too high for 75% of the patients that start maintenance.

Dr Wells is looking into who he knows in Miami that can attend to Luke when he returns school in January. If he is runs a fever Luke needs to get to the doc, no messing around. He needs to be compliant with the meds. His port will stay in place for the next few years. Will have to keep an eye on that for infections but that should not be a problem.

Luke has reached a major milestone but still has a distance to travel but he his looking forward, not back. To be honest there will still be a lot of trepidation here each time Luke has his blood drawn over the next 30 months and beyond, but we are confident the worst is behind him and he can start functioning and enjoying life as a college student in January.

One thing everyone can do to help us out is to keep Luke compliant on his meds. In that regard, anytime you email or talk to Luke over the next 2 1/2 years please begin the email, text message or conversation with "Luke have you taken your meds today".

Finally, for Luke, Gayle, Beth, Kendall, Kate and me, I want to thank everyone for your prayers, thoughts and support over the past 8 months. The cards, meals on wheels, books, models, gas cards, cookies, hats, movies and on and on were invaluable. The blood drive and concert in May was a great time and a day that Luke and his family will not forget.

God bless you all and we look forward to seeing many of you on November 7th.

Dave

P.S. A lot of blood donors are still needed for the 7th!!!!

Leukemia Sucks - September 16

2009-09-16T08:43:00.000-07:00

Leukemia sucks! Thought the last day of erwina and maintenance phase in sight was going to be be better than this. Luke feels and looks drained. He is pale, tired and having episodes of nausea. No appetite and stomach has a constant rumble.

Came to clinic today for what we thought would be the last erwina harpooning. Counts showed hemoglobin was down so he will have an all dayer getting two units of blood and erwinia. Short term benefit is the blood comes with IV benadryl which will put him to sleep for the afternoon.

After the blood and the erwinia today, Luke is off all chemo until his counts come back. He then starts maintenance. Hope getting the blood today will accelerate the bounce back of his hemoglobin and pick up in his energy level.

Learning some about the maintenance phase. The first three months of maintenance are the same; steroids for five days, one intravenous dose of vincristine each month, daily mercaptopurine and methotrexate orally once a week. Methotrexate is given intrathecally once every three months during the first year of maintenance. We were told the start of maintenance can be rough. After all the chemo the bone marrow was described as being "tired" and sometimes the chemo doses need to be determined by trial and error as the calculated dose drops counts too much.

The November 7th blood drive is moving forward. STILL NEED DONORS ESPECIALLY LATE IN THE DAY. If you are not on the donor email list be aware blood donors will be entered into a drawing for a 32" VIZIO FHDTV. The concert the evening of the blood drive is a go, just hoping its a nice fall evening.

Monday

2009-09-07T12:52:00.000-07:00

OK weekend for Luke. Two units of blood on Wednesday were followed by one unit of platelets on Friday. Also got the erwinia harpoon Friday.

He spent at lot of time on the couch this week but signs of recovery are there (guitar and model building picking up). He seems to be at the point were the cytoxan is out of his system and with that the case his counts will start to come back up. Hoping to see some white cells show up this week in his count so exposure to infection is not such a worry.

Next trip to MDA is Wednesday for erwinia. He is down to four more doses of erwinia and one dose of vincristine. After that he waits 2-4 weeks for his counts to fully recover before starting maintenance for two years. The start of maintenance involves a trial and error period of several weeks to get the dosages right but he has been told the chemo going forward will not be as toxic. Yahoo!

Wednesday September 2

2009-09-02T11:15:00.000-07:00

After receiving 5 units of red cells and 1 unit of platelets over the past week Luke is feeling better. Our instructions after being discharged from hospital Sunday were to go to the clinic on Tuesday and have blood drawn. We did and his platelets were low so he was recharged with a unit of platelets yesterday.

Red cells and platelets looked ok today so Luke he is getting the scheduled chemo of vincristine (via IV) and erwinia (via leg harpoon). He will get 5 more injections of the erwinia and one more dose of vincristine. After that they will let him recover after which he will be put on maintenance. The time between the end of this phase of chemo and the start of maintenance will be any where from 1 to 4 weeks, just depends on how fast his system recovers.

White cell count and ANC are still non-existent so he needs to be watched for infections. Expect that will be the case for another 7 to 14 days.

Blood drive is a go for November 7. If you not are not on email notice list and want to be put on let me know (dmnovick@earthlink.net) and I'll set that you get the information.

August 30

2009-08-30T17:13:00.000-07:00

Luke was discharged around noon. Doctor said he was on the fence on whether to discharge Luke. Luke physically shoved him and he fell on the side of the fence for discharging.

Last night was rough. At 2 AM Luke was called to the porcelain altar to mix his digestive juices and fluids with the waters of the commode. The mixing with waters lasted a couple of hours until they were able to get some IV drugs into him that knocked him out.

After two units of blood Saturday hemoglobin came up but still well below normal levels. Platelets continue to drop. Luke needs to take a trip to MDA on Tuesday to donate a blood sample for platelets to be checked.

On the positive front Luke had sent these pictures to Steven Spielberg. Stevo expressed some real interest in Luke heading up the modeling for his upcoming WW II epic.

August 29

2009-08-29T12:16:00.000-07:00

The last round of chemo got the better of Luke. Started off with a headache early in the week that continued to get worse. Thursday evening he started to experience chills and was running a slight fever. With the fever we were told to bring to the ER. We arrived just after midnight Friday morning.

ER was a zoo. All the rooms were occupied and there was an equal number of patients in the halls on gurneys and in the waitng area. Luke got into a room around 3 am. He was put on antibiotics for the fever and meds for the headache. Headache did not improve and he had a bout of nausea after eating a little bit for breakfast.

Finally got into hospital room around 2 pm Friday and said goodbye to the ER. Docs were was able to keep his fever and nausea under control but the headache persisted until Saturday morning. Finally a combination of caffeine and hydrocodone worked on the head. Also probably helping out was having the nausea under control and being able to eat.

Luke's white count is still zippo and hemoglobin is still low.* Today Doc decided to give him two more units of red cells. With having a fever the lab is doing cultures to see if his blood grows anythings. It takes at least 48 hours for any bugs to show up so Luke will be in MDA until at least Sunday.

Progress is good. Headache issues have subsided, he's able to eat and has walked around the halls. He is getting his first unit of blood as this is being written. The blood comes with a complimentary dose of benadryl so he will be out for the next 4-5 hours. Luke was ecstatic about being photographed getting his first unit of blood.

* Today's trivia question is "What is the normal range of red cells?"

Wednesday August 26

2009-08-26T17:18:00.000-07:00

It was a long day at MDA. Left at 6 am and arrived back home 12 hours later. Luke had a nasty headache for past couple of days and "ralphed" this morning. The good news is the headache, at least for the time being, took the focus off the aching hips and knee joints. Last weeks chemo is having its effect. White cells are essentially non-existent, red cells are down to 7.7 and platelets dropped from the 130 range to around 80.

The headache was likely due to low hemoglobin. Luke's red cell count was not at the all time low, but it is expected to continue to drop due to last weeks cyclophosphamide. Dropping counts combined with the headaches, Doc Wells gave him two units of red cells to go along with the intrathecal dose of chemo and the start of another four days of cytarabine injections. The blood came with a hefty dose of benadryl, so after the spinal injection, Luke slept through 5 hours of transfusion.

Blood counts will continue to drop, and with all the chemo he's had, Luke was told to expect his system recovery to be slow. He may need blood and/or platelets next week. The bigger issue over the next few weeks is the lack of white cells and the inability to handle any infection. Luke needs to avoid public places and please don't visit if you are not feeling well. When visiting the proper protocol is pictured above. (Steve I've been tying to figure out how best to get the picture in the blog. As part of a quasi public service announcement seemed appropriate). Luke will not be playing at Berryhill or Rudy's this week.

Last Thursday Lila and Eric dropped by for a few hours on their way from Colorado to Miami for the fall semester. Visit was short but Luke got in some guitar time with Eric and fajitas were served for lunch.

And a note about one of the lessor know affects of chemo. Chemo can influence personal taste preferences. One of the more peculiar changes in Luke's taste buds is an affinity for the State beer of Texas. Haven't run that by the MDA staff yet to find out if this is a long term change or if there is a know statistical correlation to the specific chemo Luke has received and an overwhelming desire for a Lone Star.

We were asked by MDA about doing another blood drive in the fall. Looking at November 7 as the date. Was planning on following the blood drive with an appearance of Luke along with the Motley Rockers that evening but without a big fund raising effort. The response by those interested in donating so far has been limited. Would need a lot more to schedule a blood drive. If you are interested in donating please give me an email at dmnovick@earthlink.net. Will give it a few more days before deciding whether to go forward with the blood drive or not.

Wednesday August 19

2009-08-19T19:10:00.000-07:00

Luke got the full kick you in the ass treatment today. Included was chemo via spinal injection, IV and oral. As Kenz said in the last posting this combination of chemo drops his blood counts very rapidly. Before Luke got chemo today Dr Wells told him to expect to come in for blood one or two times over the next few weeks,

Chemo took all day, did not get back until 7. The one chemo Luke got required that he get saline via IV for six hours to be sure his renal system was flushed. He gets chemo injection for the next three days but that's done a home.

Luke is now,and and will probably be for the rest of the week, on the couch in the prone position. Hoping that the nausea meds he has will keep the ralphing at bay. On the bright side, after this phase is over chemo will be a much less intensive.

New chemo

2009-08-18T21:58:00.000-07:00

Luke will start his new phase of treatment in the morning. His pain continued throughout the weekend and with so many concerned medical professionals in the family (if you can consider my mom and me that ;) ) they went to get his counts done today. His Hemoglobin was lower than last week so he received some blood (thanks to those who have donated!!) but the rest of his counts were high enough for him to start chemo in the morning. Although he was hoping for one more week off this is one step closer to heading back to school!

My dad has filled everyone in on what this last round entails but what Luke will need right now is LOTS of encouragement as all his friends are heading back to school and his body is tired and worn out and not bouncing back as quickly as it did 6 months ago. As he gets hit hard again (this chemo + one new one, caused him to be VERY sick last time) it will take him more time to feel "better" again. Any words of wisdom, prayers, texts, e-mails or visits you can manage are more than welcome and much appreciated. This chemo caused his counts to get EXTREMELY low last time but we will let you guys know if there is a reason to not visit. Please keep Luke in your thoughts and prayers as he battles such a huge enemy!

Feel free to e-mail any of us for questions or any updates on a daily basis as I know we are not always good about posting daily! You have no idea what your support means to all of us!
Kendallnovick@gmail.com
Love you all
Kendall

2009-08-17T16:11:00.000-07:00

I headed home last week and spent some time with Luke and the parents. Made the ceremonially trip to "The Del" and just hung around the house for a while and watched a few movies. Luke was having a bit of pain during the trip but I think my dad filled you guys in on all that. I just wanted to post a few pictures from the trip.

Surprisingly, on my last morning there Luke made me breakfast!!!! woohoo! That NEVER happens! Of course Luke and I also had to take our "self portraits" as seen below. Not sure why I cant have a trip home without us doing something weird in at least one picture! Oh and lastly...I am sure Luke would love for me to note his new glasses....very Apollo 13ish. When his counts are low he cant use his contacts in case he scratches his eye he could get an infection so those of us at home are stuck with the 1970s eye wear for now!

Asshat Update - August 12

2009-08-12T11:53:00.000-07:00

Luke was scheduled to start the next round of the consolidation phase today but his blood counts dropped from last week. He did not pass go and did not collect scheduled chemo. Chemo kickoff has been postponed for one week. Doc Wells was not surprised with having to delay the start of this round. He said being on chemo as long as Luke has has worn down his body's tolerance and he is not able to recover as quickly. The steroids Luke was on also may have served to elevate his counts so when the steroids were dropped his counts followed.

For those plotting lab results this weeks number were white cells 1.9 (normal 4-11), red cells 2.72 (normal 4.5-6), hemoglobin 8.6 (normal 14-18) and platelets 77 (normal 140-440). ANC was at .66. Normal level for ANC is 1.7 to 7.7. To have started chemo ANC needed to be at least .75.

Luke's only recent complaints have been thinning hair and joint pain. Hair is looking pretty thin but I still have him beat. Joint pain is being attributed to his coming off steroids and/or bone marrow making a comeback. His lab work shows a lot of immature blood cells - which is a good sign - but it may be causing the bone pain.

The upcoming phase of chemo looks rough. Next Wednesday is going to be an all day affair. It includes cyclophosphamide via IV, the first of 4 days of cytarabine (injection), an intrathecal dose of methotraxate and the first of 14 days of 6-thioguanine (oral). Cyclophosphamide is rough on kidneys so Luke gets put on an IV drip for six hours to ensure that this renal system is flushed.

Luke came prepared for today being a long day with his guitar in tow - but it never made it out of the case.

Appetite remains good. Today Luke weighed in at an all time high of 144 pounds. He would have gotten knocked out if he got the intrathecal methotrexate today so he had no breakfast this morning. After getting word that chemo was off for the day he consumed a PB and fluff sandwich, fruit snacks and a bag of gold fish followed by a sandwich and bowl of soup at Don's sandwich shop on the way home.

Nikki from U of Miami via New Jersey made her first trip Texas. Family benefited from the visit as Nikki's mom sent some of her cranberry cookies. Nikki spent a few days with us and then visited friends in Austin/Dallas.

Nurse Kendall was in town for the weekend and continued to demonstrate a great propensity to spoil her younger sibling by lavishing him with food and monetary enrichment.

We have been asked by MDA blood bank if we would consider doing another blood drive. Suggestion was a Saturday in October. If we can do it I'd like to repeat the evening concert without the fund raising. Would appreciate any feed back on interest.

Doc Wells was on vacation in Alaska the past 10 days. Today was the first time we have seen him in several weeks. He has apparently been impressed with Luke's t-shirt collection. He told Luke he saw a t-shirt that he tried to get for him but it was only being sold a flea market in Anchorage and he did not have the time to get to the flea market. This year is the 50th anniversary of Alaska statehood. Doc Wells described the t-shirt as an outline of the state of Alaska with an outline of Texas inside Alaska and the t-shirt read "Alaska - 50 years of pissing Texans off".

Luke is schedule to play at Berry Hill in Champions tomorrow (Thursday) and I think he is back a Rudy's on Saturday. He did not play at Wine Styles last week but Rick is still trying to schedule him for a date in the near future. Luke bid Cristin a farewell with a few songs at her going away to Qatar party last Friday.

Well that’s it from asshat central. Sorry about the gap on updating the blog but things have been quiet.

Update July 28

2009-07-28T17:04:00.000-07:00

Tomorrow (Wednesday) Luke finishes up with the third week of part A of the consolidation 3 phase. Next week is an off week. Possible start of the next phase the following week, but we have been told to plan on a couple of weeks for counts to recover.

The good news is the steroids Luke is on have given him an appetite and he has busted through the 140 lb weight threshold. Getting the erwinia injections in the thighs is getting old. Needle may have gotten close to a nerve a couple of times and Luke came off the bed when he got the erwinia. Don't know if the needle or the chemo going in hurts more. After the last two injections the muscle around the injection site has twitched for several minutes.

Some bad news is that with all the meds Luke has gotten for so long there have unfortunately been some nasty reactions showing up. One of the meds in particular has affected his facial muscles and mouth. It's not for the faint of heart but the picture is Luke at his worst.

Blood counts are dropping. White cells and ANC were down to 1.8 and 1.25 on Monday. On the 22nd white cells and ANC were close to normal at 3.9 and 3.16.

Gayle and I are Luke groupies - following him to Rudy's the last three Saturdays. I'm not 100% sure but I think he his going to play at Rudy's again this Saturday (6:30-10:00). He's also going to play at 6:00 this Friday at Wine Styles (north side of Louetta just west of Cutten road). It's a wine tasting that anyone can attend - cost is nominal.

Things are Good

2009-07-19T17:04:00.000-07:00

The new round of chemo started Wednesday with spinal and IV doses. Wednesdays chemo was followed by erwinia (via harpoon) on Friday. Luke slept most of Wednesday and seemed to be doing fine Thursday.

Having a week between the end of the last round of chemo the beginning of this round Luke's blood counts came back but they are still lower than normal. Luke will be at MDA for chemo Monday, Wednesday and Friday for the next few weeks. Will just wait and see how quickly and how much chemo drops his counts. We think Dr. Wells has given up on getting Luke's hair. Luke's hair thinned out but he is no where near being a cue ball!

Luke is taking a steroid during this round and that has already improved his appetite....who knows he may break the 140 lb. weight barrier. Thought the crawfish was over for the year but we dropped by the Ragin Cajun Saturday and they still had some.

Luke played at Rudy's again on Saturday. Chemo had little impact as he played straight through from 6:30 to after 9:30. Buffy and Eric had a front row seat. Don't know if Luke is going to play again at Rudy's next Saturday.

Model building continues. The air brush painting and detailing are getting pretty involved. The current project is a WW II tank PJ sent.

Luke update - at Rudy's Saturday July 11 6:30-9 pm

2009-07-08T10:20:00.000-07:00

Luke finished up the Consolidation 2 phase last week with the maximum dose of methotrexate along with erwinia and vincristine. This week is a recovery period with no chemo.

Counts this week were down a little from last week (for those keeping track white cells 1.7, hemoglobin 8.6, platelets 73 and ANC .88). With no chemo this week expect counts will bounce back. To start chemo next week ANC needs to be above .75.

The next phase of chemo is Consolidation 3 and has two stages (A & B). This phase will be rougher than the last phase. The good news is it's the last round of intensive chemo. Part A chemo includes vincristine and Doxorubicin given IV in weeks 1,2 and 3; Dexamethasone given orally for seven days during both weeks 1 and 3; methotrexate given as a spinal injection in week 1 and erwinia via harpoon in week 1.

Part B is four weeks long. Drugs are Cycloshosphaminde via IV in week 1; cytarabine via IV for four days in weeks 1 and 2; 6-Thioguanine orally for the weeks 1 and 2, vincristine IV in weeks 3 and 4 and Erwinia (via harpoon) in week 3.

Expect Consolidation 3 will finish up around October 1. After that it's maintenance for two years.

Luke is doing well. We are not aware of him inflicting any damage to life, limb or property over the 4th. We went to Traci and Jim's lake house on the 5th. Luke enjoyed the sun and got up on water skis.

Hey, for anyone interested Luke will playing and singing at Rudy's Cantina and Grill this Saturday (July 11) from 6:30 until 9 PM. He will be playing inside. Hope to see some of you there.

2009-06-29T07:31:00.000-07:00

Sorry for taking so long to provide and update. Luke is doing OK. Last chemo Luke got was via IV, intrathecal and harpooning. Chemo slowed him down for a couple of days but bounce back was quick...and no nausea. The final chemo for this phase is tomorrow and Thursday. During this phase the methotrexate dosage has been increased each time provided his blood counts don't tank. Last week his blood numbers looked pretty good so it's expected he will receive the increased dosage of methotrexate.

The amount raised for the Leukemia & Lymphoma Society stands at $11,566. We stopped by LLS and dropped off the donation last week.

Still have T's in all sizes. Let us know if you would like some - and all proceeds go to L&LS.

Passed around T's to the folks at MDA. We got Luke's primary doctor at MDA, Dr. Wells, to put his T on and jump in front of the camera.

Dr. Yuen told Luke last week she is moving over to another department effective July 1. Dr. Yuen has been with Luke from the start. We hate to see her go, but wish her the best in her new position.

June 13th update

2009-06-13T12:05:00.000-07:00

On Thursday and Friday Luke got round 3 of chemo in consolidation phase 2. That makes it two more rounds to go in this phase. After round 1 Luke got a new nausea medication which has worked. No nausea this time but he has not had much energy. Thursday, Friday and most of today he has been on the couch.

Compared to ten days ago his blood counts this week have not changed much (white cells 2.8, ANC 1.7 and platelets 126). The vincristine he gets is having some neurological side effects. Luke has had numbness in his fingers from vincristine for some time but he now has signs of foot drop. He has a problem balancing on his heels so when walks he does not have the normal heel to toe motion, his feet tend to slap down.

Next chemo is a week from Monday. He gets all the same meds he has been getting this round but for round 4 he will receive methotrexate intrathecal as well as IV.

If anyone still interested in purchasing an original AssHat t-shirt we had additional smalls and mediums printed so all sizes (S, M, L, XL) are available. Just drop me an email at dmnovick@earthlink.net

Attached are a few more pics from the blood drive and fund raiser.

The official blood drive cheerleaders (standing) providing inspiration to a seemingly apprehensive group of donors (seated).

Nurse Gayle providing patient care, Beth providing.......we are not sure!

Luke and his old friend Eric. Incidently it's a little know fact but this same old friend was the young mountain boy that played the dueling banjos theme with John Voight in the movie "Deliverance"

It's showtime!

2009-06-02T17:04:00.000-07:00

What a great weekend! The blood drive a great success, exceeding all expectations. So may people helped with setting up and cleaning up, registering donors, finding replacement donors and keeping everyone fed. The wait was at times long, but it seemed everyone made the best of it by catching up with friends and neighbors they may not have seen for some time.

A few donors experienced some light headedness. One unidentified Aggie was heard saying as she/he plummeted to his/her knees "Wow, is this fun or what!"

The concert created a lot of excitement at our house which at times was hard to contain.

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Doesn't this look like one cool dude who is about to have great time!

The evening was spectacular. It was great to see so many friends and neighbors. Thank you to Rudy (Rudy's Grill & Cantina) and Kitty (Buffalo Wing Station) for the great food. Hope everyone enjoyed the entertainment. Motley Rockers, thank you so much, just your practicing with Luke was a welcome diversion for him.

Our emcee's for the evening assured me they were maintaining accurate records of who won the raffle items, however, seeing the pain they were in Sunday morning was not reassuring. If you won a prize and have not heard from me, please drop me an email at dmnovick@earthlink.net

Luke's update as of Tuesday was back to reality. Luke had IV chemo on Monday and was harpooned on Tuesday. He got sick on the way home Tuesday, slept for a few hours but seems to be doing OK this evening. Right now he is tuned into the latest segment of the Deadliest Catch.

2009-05-31T08:52:00.000-07:00

Hi all!!
Yesterday was amazing and we are SO thankful for all the support! There are pictures to follow but I just wanted to let everyone know that going into the blood drive we had 102 spots and we ended up with 119 units and 3 platelets...and we actually had to turn people away!! WOW!! I cannot wait to hear back from MD Anderson on Monday!
As soon as we figure out how much money we raised for the LLS we will let you guys know. It was an amazing day/night and we could not have done it without you all!
Love
Kendall

2009-05-28T10:35:00.000-07:00

Above is the awesome graphic that Vanessa Seghers came up with for Luke's t-shirt! We will have shirts for sale at both the blood drive and the concert, they will be $10. Much thanks to Jane and Vanessa for all of their help and their screen printing services!!!

Asshat Update

2009-05-23T06:52:00.000-07:00

Luke had a rough time with this weeks chemo. This was the first time he received Methotrexate IV and he spent Thursday night/Friday morning purging. Because of the long weekend the docs did not want to run the risk of him getting dehydrated so they had him come down to MDA to get IV fluids and IV meds to help with the nausea.

Nausea looks like it is under control. To soon after chemo to see any change in his blood counts. He'll need to catch up on sleep but expect he will be in reasonable shape by Sunday and at full speed by mid-week.

Have a few more items for the raffle including dinners, pool lounge and a full car brake job to name a few. Will publish the complete list in a couple of days. For those planning to attend the event the evening of May 30th be sure to bring your lawn chairs. Also Rudy's and the Buffalo Wing Station will sell beverages but feel free to bring your coolers w/beverages of your selection.

Hey for fans of the Benevolent Order of the Motley Young Rockers the following is a link to their website and info on the May 30th event: http://home.comcast.net/~bomyr/index_files/Page2058.htm

Vacation Over - Next Round of Chemo Starts

2009-05-20T16:47:00.000-07:00

Luke's blood counts looked great today so he started his next round of chemo. It was a long day (7:30 - 4:00) as it involved several hours of waiting for full labs to come back. Day included getting knocked out for bone marrow and spinal fluid samples, an intrathecal injection of methotrexate followed by IV doses of methotrexate and vincristine. Tomorrow it's Erwinia via the double harpon. The next chemo will be June 1st with a repeat of the IV methotrexate and vincristine followed by Erwinia the next day.

Luke benefited from the additional time off as he feels and looks better than he has in weeks. This past week he spent a lot of time warming up the guitar and voice for the 30th.

Kendall says the blood drive is fully subscribed, that means there are over 100 donors which is fantastic. Kendall will be emailing everyone donating their times and some dos and don'ts from MDA for donors. Everyone donating thank you not only from Luke and his family but also from all those in treatment for cancer at MDA.

Now for the week in pictures. Shot to the left is Luke and John (Luke's room mate from Miami) who visited on his way back to Seattle last week. To the right and below is a shot of Luke. John and Paul on their tour of the Texas hill country.

The next pic to the right was also taken on the tour of Texas. There was a stop over at the Texas state capital where Luke paid his respects to one of his favorite Texas politicians.

Finally, some time ago Meghan C dropped by a large bin of army solders at the house for Luke. Her note told Luke to enjoy playing with the soldiers and to send some funny pictures. In response to Meghan's request here are some pics on Luke playing with his soldiers.

Luke Novick Leukemia & Lymphoma Society Benefit

2009-05-16T16:43:00.000-07:00

The following are some of the the raffle items included in the May 30th Leukemia & Lymphoma Society Benefit. ALL PROCEEDS FROM THIS EVENT WILL BE DONATED TO THE LEUKEMIA & LYMPHOMA SOCIETY!!

· 42” flat screen LCD TV
· Five burner gas grill
· Car care package (car exterior/interior detail cleaning. Oil change, $50 parts accessories coupon, car care products)
· 32” flat screen LCD TV
· Kilburn’s Grill & Tavern’s Executive Chef James Harris three course dinner for 4 with beverage pairing
· Wine Assortment (6 bottles)
· Annual dog/cat check up (includes exam and shots)
. Catering tray from Chick-Fil-A

Gift Cards
· El Palenque
· Lowe’s
· Cheeburger - Cheeburger
· Napoli’s
· Perry’s Steak House
· Costco

Blood Drive Information

2009-05-14T09:40:00.001-07:00

Sanda thanks for the comment - should of thought about posting the blood drive specifics on the blog. Blood Drive information follows. Kendall still has spots to fill!!

We are also doing a fund raiser for the Leukemia & Lymphoma Society that evening - Have also provided more information on that.

Blood Drive Info:

What: Blood drive (platelets and red blood)

When: 10:00 am to 4:00 pm on Saturday, May 30, 2009

Where: Lakewood Forest Residence Club
15006 Lakewood Forest Drive
Houston, Texas 77070

How: Email Kendall Novick at kendallnovick@gmail.com to make an appointment to donate.

Other: There will be swim meet at the Lakewood Residence Club on May 30. For blood donors that are not attending the swim meet parking spaces will be reserved in the front of the Residence Club.

All blood donors will be entered into a drawing for an iPod touch.

Concert Info;

What: Luke Novick, friends and Lakewood’s own Benevolent Order of the Motley Young Rockers. Admission will be $5.00 with all proceeds donated to the Leukemia and Lymphoma Society.

When: 5 PM until 10:00 PM on Saturday May 30, 2009

Where: Rudy’s Grill & Cantina 11760 Grant Road (the intersection Grant Road and Lakewood Forest Drive).

Other: Weather permitting the concert will be outdoors, so bring your lawn chairs.

Food and beverages (soda, beer, and margaritas) will be available for purchase from Rudy’s Grill & Cantina and the Buffalo Wing Station with a portion of the sales donated to the Leukemia and Lymphoma Society.

“Leukemia: The Original Ass Hat” T-shirts will be available for sale, and raffle tickets will be sold ($10) for a 42” LCD TV (courtesy of the Spring-Cypress Wal-Mart store). The winner will be announced that evening. In addition there will be numerous items, donated by local businesses, auctioned at the concert with all proceeds going to the Leukemia & Lymphoma Society.

Vacation Extended

2009-05-13T11:31:00.000-07:00

Luke's counts are still improving but not quite at the point were they can start the next round of chemo,. Gayle was told last week that they did not expect Luke's counts to be back so the news did not come as a surprise. The benefit - no trips to MDA until next Wednesday.

The delay was welcome news to Luke as he was not looking forward to chemo starting again so soon after to just started to feel better.

His cousin Paul is in town for the week and John, Luke's roommate from Miami, surprised Luke yesterday. John stopped by Houston for a few days on his way to Seattle for the summer. John has never been to Texas so the three are taking advantage of some nice weather to give John a tour of the Texas hill country.....pictures to follow.

Friday May 8

2009-05-08T17:42:00.000-07:00

Luke started the day not feeling great. He got 2 units of blood and seems to rebounding. His hemoglobin was low but his ANC and platelets were showing signs of recovery. For now he needs to keep a watch on exposure to infection. With as low as his blood counts are he will need to wait on next week's labs to see if he can start the next round of chemo.

Time Off from Chemo

2009-05-06T17:07:00.000-07:00

On Monday Luke got the last harpoon for a while. His labs revealed that his counts were still low, things are beginning to trend upward but rather slowly. Luke did not get any blood, his doctors would like to see how his body reacts now that the chemo has stopped for a few days. Luke will be back down at MDA Friday for another count check, if necessary he may be transfused.

Because his counts are so low Luke is pretty tired and he runs the risk of infection. Dr Yuen does not think he will be ready for chemo next week, but he has surprised her before.

The next round of chemo is not as intensive as the last several months. For the next round Luke will get methotrexate, vincristin and erwinia every 10 days with a few spinal taps thrown in. The dosage of methotrexate will be increased each week until his system says no more.

Last Harpoon Monday; Week Long Respite from Chemo Starts Tuesday

2009-05-02T15:47:00.000-07:00

Hello everyone. This week Luke received the his double chemo injections M-W-F. Wednesday was his longest day as in addition to the chemo he needed another unit if platelets and two units of blood. To date Luke has needed 2 units of platelets and 11 units of red blood. He is just one Leukemia patient at MDA so you can imagine how much blood MDA needs on a daily basis. MDA needs all the platelets and blood they can get!!

Luke is feeling good despite some pretty low hemoglobin. Also with no white cells the Docs wanted him in isolation as much as possible. By week end all counts did look to be trending up.

To the right is Luke and nurse Anna. Anna is a cancer survivor herself and has been a delight to get to know. She has administered most of Luke’s chemo, blood and platelets as an outpatient and took responsibility for harpooning Luke’s left thigh on Friday.

The Luke story of the week comes from Wednesday's clinic appointment. Nurse Brandie came back with Luke’s lab results but before she could say anything Luke asked what super hero powers he had tested positive for. She had to have him repeat the question and responded with "those results aren’t back yet".

Uncle PJ was a surprise visitor this week. He stopped by when driving from Kansas City to Tulsa for Colin’s (his son) soccer tournament (he was aware that Tulsa via Houston was not his shortest route). PJ stayed long enough to donate some chicken broth (aka as platelets) and red blood cells to MDA as well as supervise the MDA nursing nursing staff administering to Luke after Friday's chemo.

You can form your own opinion but judging from the picture to the right it looks to me like donating is either truly painless or MDA provides a complimentary dose of Valium before hand.

PJ brought Luke a book that was highly recommended by Chase (his other son). The book is one with extensive and very profound insights into life. It provoked laughter from Luke numerous times during Friday's chemo. As testament to the sophisticated nature of the book, when his parents asked what was so funny Luke's response was “you don’t want to know” or “you wouldn’t understand”.

PJ also brought a box full of his version of the "Ass Hat". The design was done by one of the design architects at his firm. I call you attention to the picture below and the subtle curvature in the lower portion of the "SS".
By the way PJ left at 6 am to continue the drive to Tulsa Saturday morning only to get a call at 9 am that the soccer tournament was rained out!

Kendall reports that the response to the blood drive has been great. All the time slots are close to being booked and she says she may need to think about MDA bring in more tables.

We expect to finalize plans for the Leukemia and Lymphoma Society fund raising event this week. We do know Luke will provide entertainment and Wal-Mart has donated a 42” LCD TV that will be raffled off along with other items. Right now we are working on two dates, Saturday May 30 and the afternoon/evening of Sunday May 31. We will finalize ASAP but for now please keep those dates open to help us help others in their fight with Leukemia.

Harpooning season open one more week

2009-04-27T18:27:00.000-07:00

The patient is fairing well. No problems over the weekend. Counts are still depressed which makes the swine flu that much scarier (Luke did suggest this evening our going to the army surplus store tomorrow and picking up a Haz-Mat suit).

Blood stats are white cells .5, hemoglobin 7.9, platelets 22 and ANC .32. Luke received a unit of platelets today but they passed on giving red blood. Will see what Wednesday labs look like.

As Luke says, the nurses "harpooned" him again today. Same routine as before; one, two, three stab. Three harpoonings down and three to go. So far not allergic reaction to the ELA. The only after effect of the harpooning was Friday when the thighs here described as the first day of swim practice followed by a few hundred squats.

That's it for the medical report. Model building continues. New project is building a pedal for his guitar. Have 6 potential concert attendees, still plenty of room.

MDA nurses need to double team Luke!

2009-04-22T18:17:00.000-07:00

It's Wednesday evening. Luke is back from MDA after a long day. He received both red cells and platelets in addition to scheduled chemo. Chemo wise he received vincristine and Erwina L-Asparaginase (ELA). Vincristine was done IV. ELA was a different story.

Monday's posting had a brief expose on ELA. ELA is stable for only four hours so it's ordered. mixed and injected without any delay. We knew ELA would be an injection into the muscle, but what we did not know was each dose would consist of two injections.

To minimize discomfort the MDA nurses doubled teamed Luke and delivered two injections simultaneously, one in each thigh. The administrative process was nurse Sande and Anna came into Luke's room, smiled, Sande said on the count of three, Anna counted to three and Sande put a two inch needle in the Luke's left thigh and at the same time Anna put a two inch needle in Luke's right thigh. Luke had no time to say anything and Sande and Anna placed themselves sufficiently away from his flailing arms that they were out of harms way. In the end Anna was deemed to have provided the kinder, gentler experience but to Luke it probably did not matter. Not that Luke cared, but I wish I had had the camera ready as it was a bit of a surreal experience seeing the synchronized administration of injections. That said there will be other photo opportunities as ELA is repeated five more times.

So far no allergic reaction to the ELA. We are hoping no antibodies build up causing an allergic reaction in round two on Friday.

Picture of the week is Luke and Dr Yuen. Dr. Yuen has been with Luke from day one at MDA. She is a great individual with an ever present smile. By the way I have told Dr. Yuen if she loses interest in the practice of medicine she may have an opportunity to star as Edna in the movie sequel to "The Incredibles". What do you think?

Luke has gotten back to his model building. He spends a lot of time on each and per the attached pictures, the results are pretty impressive.

At the end of May if Luke can be convinced and feels up to appearing in concert Mom, Dad, Jeff and Michael have committed to attend. Hoping there are others.

Blood drive and fund raising plans are going great. Hope to have a few surprises to announce soon. Keep May 30th free!

April 20

2009-04-20T17:10:00.000-07:00

After his blood transfusion last Thursday Luke has had some good days. A bit more energy and appetite and no headaches or nausea.

Today's labs were as expected. Hemoglobin is up a little (8.5) but still low, white cells are still almost non-existent at 200 and platelets dropped to 30,000. He finished his cybertine on Saturday. Last time low counts came about a week after the last dose of cybertine.

Wednesday Luke will get the first dose of the replacement drug for PEG asparaginase -the drug he had the allergic reaction to. For those interested and since I have nothing else to to this evening here's some information about asparaginase and what it does. L-asparaginase is an enzyme that breaks down L-asparagine which is produced by normal body cells. ALL cancer cells don't produce L-asparagine so they need to get their supply from the blood to grow. PEG asparaginase reduces the L-asparagine in the blood. Without a supply of L-asparagine the ALL cancer cells starve and die.

Asparaginase Luke gets is derived from E.Coli. PEG Asparaginase has a coating that has a time release effect that keeps it in the body for an extended period. The new drug Luke will get is Erwinia L-asparaginase which does not have the coating to keep it in the body. Consequently Erwinia L-asparaginase needs to be administered in lower/multiple doses, so the Lukester gets to go to MDA M-W-F for two weeks to get his dose. He'll get to hang out a few hours each trip to watch for allergic reactions similar to PEG asparaginase.

The sisters planning for the May 30 blood drive and Leukemia Society fund raiser continue. Hope to see a good crowd. Been trying to convince Luke to put on a benefit concert that evening - would any of the blog readers out there donate to the Leukemia Society to hear Luke play and sing?

Wednesday Post-Clinic....

2009-04-15T11:34:00.001-07:00

Hi All...Luke had his clinic appointment this morning. His body is responding as expected to the chemo, while this is great news it also means his immune system has taken a hit. His doctors have asked that he lay low this weekend and said that visitors are not a good idea as he extremely susceptible to infection. So, please continue to email/text/call Luke, but for the next few days no visitors.

He has to return to MDA tomorrow for some blood. The clinic was super busy today and his counts were what MDA deems "borderline" for transfusion so they asked that he return tomorrow. Luke also had his weekly chemo today, it was a quick injection versus a longer infusion. We left the MDA and are already home, Luke is crashed in the game room on the couch.

Thanks for keeping up with us via the blog and for all your love and support. Updates soon!

EB

Monday April 13

2009-04-13T18:35:00.000-07:00

Happy to say the past few days have been quiet. Luke's initial bounce back from chemo was pretty quick. He is happy to report that he's had no pain meds for 48 hours. He has clinic on Wednesday and will get labs drawn to see where his blood counts are then he starts another round of chemo.

On Sunday Luke felt well enough to participate in the first annual asshat ugly Easter egg contest. Winning entries will be posted on the blog soon.

Kendall left on Friday and Beth assumed responsibility for Luke. Beth returns to SF mid week when full responsibility for Luke will be turned over to the 'rents.

Alex Anderson stopped by today for a quick visit. That's all the news for now. We see how the rest of the week goes.

Blood donation

2009-04-08T14:22:00.000-07:00

Hi all-

So we are sooo excited and have had an overwhelming response to Luke's blood drive and may even extend the hours so let me know soon if you want to donate so I can let MD Anderson know if we need more time! I am attaching a link below that gives you info on blood and platelet donation through MD Anderson so you know whether or not you can donate. Also, here is the address of the facility

Lakewood Forest Residents Club
15006 Lakewood Forest Dr.
Houston, Texas 77070

http://www.mdanderson.org/departments/bloodbank/dIndex.cfm?pn=4499E730-38C1-4154-AE022E7734DF9264

E-mail or call if you guys have any other questions.

Just a quick update on Luke:
Got all of his chemo last night and this morning and is feeling pretty crummy right now. Had been nauseous and been throwing up all morning but was able to get some IV Benadryl which seems to help him more than the anti-nausea meds. He was able to lay down for his MRI which took about 45 minutes. He then slept all the way home and went straight to bed. We have been giving him sips of fluids and keeping up with the meds to stay on top of the stomach yuckies!

Please continue to keep him in your prayers, this phase is literally a PAIN IN THE ASS and creates only pockets of time where he feels ok.
Updates soon
Kendall

MAY 30TH 2009

2009-04-07T18:10:00.000-07:00

Hey guys...on Saturday, May 30th from 8am to 2pm we are going to be hosting a blood drive at Lakewood Forest Residents club for Luke and MD Anderson. Last year alone MD Anderson had to use 121,000 packs of platelets for their patients. They need our help to stock the blood bank!

We will be giving away shirts and doing raffle entries for some pretty sweet prizes for those that donate blood or platelets. For those that cannot donate we will be selling shirts and raffle tickets and all the money will go to the Leukemia and Lymphoma Society! I would love for you all to come out and support Luke even if you cannot donate so here is what i need...anyone that is interested in donating needs to contact me at my number or e-mail address below so I can get an idea of how many people will be donating...the more the merrier!!! Also, when you send me an e-mail or talk to me let me know what time you would like to donate so I can put you in a slot, pretty much every 15 minutes someone can donate (give or take). Their will also be opportunities for a few people to donate platelets, these are much needed in cancer patients because they help the blood clot so without them a patient can lose a lot of blood, the problem is it takes about 1.5 hours to donate so if you have the time to do it we would love to have you and we will be giving you extra raffle tickets if you decide to donate platelets!

You have no idea how much giving blood can help people so please come out, get a shirt, and maybe win a cool prize and support the Leukemia and Lymphoma Society! Luke will also be there and maybe we can convince him to sing a bit if he feels well enough!

Talk to you all soon
Kendall Novick
kendallnovick@gmail.com
720-841-7759

PORT!!!

2009-04-07T17:50:00.000-07:00

I got into town yesterday and Luke got his port today and was admitted afterward to start his chemo. His port is "accessed" and working well he is having a bit of shoulder pain on the side where he got his port and a little headache but other than that he is doing well.

He starts another round of the "tough stuff" tonight so this time next week his counts should be way down and he may need another round of blood. He is literally bored out of his mind so if anyone has any amazing ideas on how to keep him occupied please let us know :)

He is being a trooper but is bothered by every beep of the IV pumps and monitors! We just got to his room for the night so are settling in for some good sleep (yeah right!) and chemo. We will just have one dose of chemo and an MRI tomorrow (to take a good look at his head since his headaches have been so bad) and then should be heading home as long as he is doing well!

Will be in touch
Love ya'll
Kendall

Sunday April 5

2009-04-05T16:54:00.000-07:00

So far the weekend has been uneventful. Luke was back at MDA on Friday for an appointment with the neurologist and to have some lab tests. He will likely have an MRI done to get to the bottom of his headaches.

Our hearts skipped more than just a few beats when the labs taken before his discharge on Thursday showed 1% blast cells. The doctors have assured us it was normal as his bone marrow is working overtime to produce blood cells. We smiled again on Friday when labs came back with 0% blasts.

We're enjoying the sunny and cool weather by taking walks Saturday and Sunday evening. Right now Luke is scheduled to be at MDA Monday for an anesthesiology assessment prior to having a port put in on Tuesday (this will make it easier for lab draws as well as chemo....basically he won't have the line in his arm). Wednesday he has clinic and starts chemo once again.

Fighting boredom and no appetite. If anyone has a cure for either let us know.

2009-04-02T12:52:00.000-07:00

LUKE IS COMING HOME!!!!!

Update from Spa MDA

2009-04-01T12:42:00.000-07:00

Family and friends here is the latest on Luke: The neurologist came by for a visit this morning, his initial professional opinion was Luke's brain was off and slightly twisted about the center cortex (since we knew that already we were prudent and asked for a second opinion). In reality, Luke was likely experiencing migraine headaches caused by either chemo, his lumbar punctures, dilated blood vessels in his head or a combination of all three.

They are now trying different meds for his headaches and are cutting back on his morphine. Reducing the morphine has greatly improved his level of consciousness, Luke was on a pretty high dose Monday and Tuesday and was, when in a subconscious state (i.e. asleep), expressing some rather unique philosophies about any one of a number of topics. In addition his sleep-talking/ranting subsiding, his headache issues are starting to get under control.

Today Luke received his latest IV dose of vincristine. He will go ahead with his interthecal (LP) dose of methotrexate tomorrow. To reduce the chance of another round of headaches, assuming they are related to the LPs, they will monitor the pressure in his spinal column when they inject and will have some of his blood injected around the site of the LP puncture (called a blood patch) to prevent spinal fluid from leaking out and causing an imbalance of pressure upstairs. He won't get the blood patch until Friday so, it looks like he will be extending his stay at Spa MDA until at least Saturday. This visit to the Spa we got to meet the dimpled, world renowned 9th floor nurse Yvonne! We will miss her!

Luke's appetite is getting better (adjacent picture is some of Wednesdays lunch) and with the morphine reduced he has greatly extended his waking hours. One curious fact about the chemo Luke is receiving is he now has no reflexes in his knees and ankles. You can take as big of hammer as you want and if you give his knee a rap there is no response. We believe that his response to other stimuli is also being impacted by his chemo as he is having a difficult time responding when there is a request for silence. Father Bravo stopped by Monday but missed Luke as Luke was out getting his CT. Thought he would get back on see Luke today.

Just waiting on a doc

2009-03-31T17:18:00.000-07:00

Luke has had an up and down day. The morning started off rough with a pretty bad headache and he wore himself out after taking a shower and changing clothes so he slept until this afternoon. After some "caffeine in a bag" through his IV his headache got a bit better and he was up and chatting for a while. The leukemia docs have exhausted all of their efforts at this point so they have called for a brain specialist (neurologist) to come in and see Luke, especially since there is a family history of migraines. Apparently this doc is the "headache guy". His CT was negative THANK YOU JESUS!! So we will see what the neurology doctor says about the headaches. Luke gets pretty disoriented at times because of all the medications he is taking to control the pain, he has been frustrated that he keeps losing days and feels a day or two behind most of the time. He was actually able to stomache some Chik Fil-A this afternoon and then fell back asleep this evening.

He has really enjyed reading all of the letters and posts online when he is awake. He has IV chemo tomorrow but they are going to hold off on the lumbar puncture for now and make it up at a later date. It seems like it is just baby steps at this point...we will continue to keep you all posted, thanks so much for all the kind words and prayers, they are much needed!

PS We are scheduling a blood drive in Luke's name that will most likely be at the end of May so remember if you are going to donate blood now you can only give every 56 days and we want EVERYONE to come out for the one in May! I will keep you updated on when that will be!

Love you all
Kendall

Luke - Day 4 at Spa MDA

2009-03-30T11:26:00.000-07:00

Hey things are looking up some for Luke. Still has headache and fever issues but progress is being made. His labs are improved with white count, hemoglobin and platelets all starting to move in the direction of normal humanoid levels.

Upping his happy time meds for his headaches has helped. He will have a scan this afternoon to see if they can identify anything upstairs that could be causing his headaches.

Date of eviction is not known. He needs to hold a normal temperature for 24 hours and be off of IV pain meds. He has chemo and an LP on Wednesday. Will definitely have chemo and will likely have LP. Best case would be receipt of an eviction notice on Thursday.

Got out of bed and cleaned up and was able to eat a little - though not much. Effort wore him out so he outened the lights to take nap.

...

2009-03-28T17:00:00.000-07:00

Luke is sleeping the day away with the help of pain medication for his headaches. Both "the parentals" have been with him and are providing frequent updates. He has been feeling a bit better when he is up but the lumbar punctures (spinal taps) are doing a number on him and they are essentially causing alot of irritation and inflammation of the lining of his brain and spinal cord which gives him a pretty gnarly spinal headache. He spiked another temperature last night but his blood cultures are still negative at this time.
His morning labs looked a bit better with more white blood cells and greater blood levels in general after getting his blood yesterday. He has to be fever free for 24hours before they will let him come back home...so keep up the prayers FEVER FREE!!

Asshat update March 28

2009-03-28T16:34:00.000-07:00

Rough day. Bad headache all day and got worse in the evening. Kept the room dark and an icepack on his forehead. "Yaked" this evening. Temperature is spiking but seems to be controlled by Tylenol.

Nothing grew in Luke's blood culture in the first 24 hours. They will check it again at 48 hours. Even nothing showed up in the blood culture the doctors said his his temperature will spike until he has been on antibiotics for 48 hours, just part of dealing with the asshat.

2009-03-27T14:25:00.001-07:00

Hi all-
Since Luke cant have visitors try and send him messages on here, on his facebook page, or using that MD Anderson site from when he was first in the hospital (https://www2.mdanderson.org/sapp/contact/message.cfm) this is where you can type him a message and it gets hand delivered to his room. Even if you are a friend of "the parents" as he calls them it is so nice for him to have encouragement and such a vital time in his illness.
Someone will update with any and all news as it comes in!!
Thanks
Kendall

Friday March 27

2009-03-27T12:34:00.000-07:00

It's around 2:30 on Friday. Luke's temperature spiked so he will be admitted. He will get antibotics for possible infection. Been told to expect a stay of 2-3 days. With his blood counts in the tank no visitors for a while.

Thanks for all the support.

2009-03-27T07:30:00.000-07:00

This is a follow up on Kendall's email with a message of my own for everyone in Houston. Luke was diagnosed 2 months ago today. Luke has received 6 units of red blood cells to date, is getting 2 more units of red blood cells today and will probably need platelets Monday. Blood and in particular platelets are in short supply in Houston and MDA and are being released only if need is critical.

If you can donate there is a big need at MDA. Luke can get credit for any blood or platelets donated but in all honesty that is the least of our worries. What we have learned about blood donation in Houston is MDA's use of blood and blood products is large enough were they have their own donor program and sites. As a result MDA is not serviced by either the Gulf Coast Regional Blood Center or the Red Cross, which are the two groups that run the blood drives in Houston that most of you are are familiar with.

Naming Luke for credit when donating at either the Gulf Coast Regional Blood Center or the Red Cross will not transfer to MDA.
To get credit at MDA blood needs to be donated at an MDA donation center. The link to the MDA blood donation website is: mdanderson.org/departments/bloodbank/dIndex.cfm?pn=0A133F7B-C05C-4906-A3B0DB0161B9CD6C. There are several sites around town and each has their own hours. The phone number for the main center is 713 792 7777. For anyone to donate as a credit to Luke, which again is not my purpose in sending this, the donor would need to provide Luke's patient ID number ("776302") when donating at an MDA facility. Luke does not receive the actual blood donated so blood type is not important.

If you can help, patients at MDA would appreciate it.

Fevers

2009-03-27T06:49:00.000-07:00

I dont know a ton of details but Luke is with my parents in the Emergency department at MD Anderson after spiking a temperature over night. He also has some nausea and a headache (both of which he has had prior to the fever). They drew some labs and we are just waiting on what the docs have to say about the labs.
When Luke was first diagnosed Dr. Wells (his head doctor) made sure to let us know that it is not "if" Luke gets an infection but "when" and that our family and most importantly, Luke, would become VERY familiar with the MD Anderson ER. One of the most important things in a patient getting chemo that knocks down your immune system so much is to come straight to the ER if there is a fever!
As we get more details someone will check in!
Keep Luke and his strength in your prayers...he is getting tired of that place!!
He looks at this site too so either on here or on the facebook page leave him a message!!
Love you all
Kenz

Home

2009-03-25T21:54:00.001-07:00

Luke got to come home tonight...his labs came back, much improved! Just wanted to let you all know!

Hives and itching

2009-03-25T17:39:00.000-07:00

Luke had his regular Wednesday appointment at MDA today and ended it with an admission to the hospital. He started the day out having an allergic reaction (hives and facial swelling) to one of the drugs he had recieved (anti-asperaginase), this is apparently is pretty common. They stopped the drug and gave him some benadryl and steroids and Luke slept the day away, he also received a blood transfusion. During the second unit of blood all of his labs came back and his carbon dioxide level (this helps to tell how acidic or basic your blood is) was extremely low. This can be caused by a few things, but the docs are not sure the exact reason but it is possibly due to the fact that he hasn't been able to eat much over the last few days. More labs will be drawn this evening after all his transfusions are done and hopefully he will be sent home later tonight...I just got off the phone with him and verbatim, he is in no way staying the night at the hospital. Someone will update the blog later when we know what his lab results are and what the night ahead holds!

Thanks for the continued prayers and support

Update March 23

2009-03-23T13:52:00.000-07:00

There is not much to report. Luke finished his second round of Cytarabine on Saturday. He is tired, has no appetite and is battling headaches and some nausea. Believe it or not though, he still has a full head of hair.

Luke has a clinic appointment on Wednesday. Depending on his lab results he may need more blood. On the chemo menu this week is Mercaptopurine, PEG-asparaginase, methotrexsate and Vincristine (we will have to wait to see what his labs look like to see if he gets the full chemo menu).

Terrance and Enid returned to Miami on Friday. Kate returned to school on Sunday. Francis stopped by Saturday and Megan is in town for her spring break this week. Aunt Mimi and cousin Callie are on he way in from Denver for a visit. Luke enjoys visitors but it wears him out. I took a long ride with Luke on Sunday, we had no destination, just picked a direction and drove. Other than his "yaking" on the way home it was a good adventure.

Wednesday March 18

2009-03-18T13:45:00.000-07:00

We are learning that dealing with the "Asshat" there are going to be good days and not so good days. This was one of the not so good ones. Luke had clinic at 7:30. He woke up with a bad headache and for the first time nausea.

His blood was taken upon arrival at MDA. The lab results showed the cytarabine is taking it's toll. His hemoglobin was down to 6.3 (14-18 is normal) and as a result he got two units of blood, he also got methotrexate intrathecal (spinal) and the first of four days of cytarabine. With his hemoglobin so low he spent most of the day sleeping while being transfused.

Cytarabine's effect on the blood counts will max out between days 7-14. Because he gets cytarabine again this week, Luke will likely need blood again next week and possibly the week after.

Matt Frazier and Greg Balhoff stopped by yesterday afternoon and stayed for dinner. Enid and Terrance made it in from Miami and arrived late last night. Luke fell asleep before 10 pm and left for MDA at 6:15 am, so he did not see Enid and Terrance until he got back from MDA around 7 pm.

Luke is doing a better this evening, his headache and nausea are under control. His energy picked up enough with the blood to want chips and salsa from the Del. We will need to watch things for the next few weeks. Along with a low hemoglobin, his white cell count is low (1.5 vs. 4-11 being normal) which makes him very susceptible to infection.

Everyone take care.

2009-03-16T16:54:00.000-07:00

Greetings from asshat central. The highlight of Luke's weekend was the arrival of his sister Kate, home on spring break, and his belongings from U of Miami hitting the driveway. Both sister and possessions arrived within an hour of one another.

Luke received many cards and letters during the week. The most unique were the "Asshat" and "Go Luke" M&M's from his Aunt Sherry and Uncle PJ (to our knowledge M&Ms of this design are not available in local stores - if you have a chance come by and enjoy a few while they last).

Physically Luke is hanging in there. Chemo has started taking a toll, he's tired and witout taking steroids his appetite has all but disappeared. We have not found any menu item that he has had an enthusiastic response to.

He finally gave up on the mowhawk and opted for a buzz. It looks like the chemo took care of all his dark facial hair as now his beard is quite red in color.

We are watching a lot of movies. Luke took a break from model building for a while but is now attacking with a renewed interest. To date he has finished two airplanes and a tank.

Enid and Terrance from U of Miami are rumored to be taking a spring break road trip to Houston, Luke is looking forward to the visit!

His next clinic appointment is scheduled for Wednesday, at this visit we will see what his blood work numbers look like and this will determine whether he will need a transfusion.

Everyone take care, thank you for your continued support.

Start of Consolidation

2009-03-11T17:46:00.000-07:00

Luke started Part I of Consolidation getting 4 meds. Cyclophosphamide, cytarabine and mercaptopurine were given IV and methotrexate was given by an injection into the spine. Clyclophosphoamide is hard on the kidneys and bladder so Luke is spending the night in MDA on IV fluids to be sure he is hydrated. He will get Cyclophosphamide again in week 5.

First appointment at MDA was 7 AM so it was an early morning. After labs and the spinal Luke had a good lunch and then slept several hours in the afternoon as he got the rest of his meds. As of the evening he was awake and having dinner.

The chemo protocol will hammer his blood and immune system Doctor said he would not be surprised if Luke needed a couple units of blood next week.

Luke's week off was good. Being off steroids the appetite is not what it was, but it is still good. Over the time off he got to play guitar, eat crawfish (twice), walk the beach and enjoy numerous visits by friends. Kendall returned to Denver today and Kate arrives from Kansas Friday. He is looking forward to his things from Miami arriving this weekend.

That's the latest. Take care and thanks for all the support.

The Weekend before phase II

2009-03-10T18:05:00.000-07:00

Sorry it has been forever since anyone posted! Luke has had the last week and a half off from any procedures or chemo, but we venture down to good ole MDA at 7am tomorrow to begin phase II (consolidation phase). So here is what we (I have been in town for a week) have been up to this weekend...

Luke was well enough to spend lots of time out with friends but Sunday night we all went down and listened to some of our neighbors play music at Woody's and Luke played during one of their breaks which was awesome! Thanks soooo much to all of the guys in The Benevolent Order of Motley Young Rockers (I hope I got that right). The pictures above are from Sunday night.

We went to Galveston today and collected some seashells for me to take back to Denver and went and ate out. The weather was really nice and even though we just put our feet in the water was surprisingly warm. Tomorrow starts the "kick your ass" chemo and we are expecting Luke's head to be without hair soon as it is slowly thinning. This next part is 8 weeks long and has many different parts with many new drugs and some of the old ones. I think we are all ready to have the next 6 months behind us but Luke continues to take it day to day because he knows he may not get out much over the next few months.

Luke will be MUCH more susceptible to infection during the next few months than he was last month so make sure if you are sick or just have a scratchy throat don't come by; however, Luke LOVES seeing new people and it gives him things to look forward to...I mean he can really only look forward to his sisters coming into town so much. SO if you feel well please come entertain him for an hour or two. We will keep you all posted as Luke gets the first round of one of the "new drugs" tomorrow. I attached a few other random pictures below. Love you all and thanks so much for all the love and support the next few months is when we and mostly Luke will need it the most!

Please note--the leukemia/chemo DOES NOT cause Luke to make weird faces, he just enjoys doing that in pictures so I tried to put the least offensive ones up!

Stupid steroids...

2009-03-01T12:20:00.000-08:00

So Luke and dad made a trek down to the MDA ER last night because Luke woke up with excruciating joint pain. It ended up to be he was going through steroid withdrawal (steroids were stopped on Friday). They gave him some pain medication and IV fluids and sent him home-he says he is already feeling better. The good news we did get out of the whole thing was that the results from his bone marrow aspiration on friday = NO BLASTS!!! So on to phase II!!

I wanted whoever got Luke the Snuggie (shown above) to see that it is getting A LOT of use, and if you try and laugh or make comments Luke states "The Snuggie is no laughing matter Kendall". I am also just posting a few pictures from when I was home last week. Luke and I have a habit of goofing off when taking pictures-and showing our tongues-as you can see with some of the pictures I posted in a previous blog, so when i got a new camera we had some catching up to do with picture taking! I also wanted to show you guys a picture that our AMAZING cousin Kevin DREW for Luke. It is only a picture I took of it so it really doesnt do it justice but he did it all by hand from some pictures he had of Luke from back in November. It really is freakin cool...

Thanks again for all the love and support!! Come by an say hi!

Saturday, February 28: Luke 1 - Asshat 0

2009-02-28T07:52:00.000-08:00

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 :(

2009-02-24T07:41:00.000-08:00

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

2009-02-20T18:43:00.001-08:00

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

2009-02-16T12:53:00.000-08:00

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

2009-02-13T18:06:00.000-08:00

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...

2009-02-12T21:15:00.000-08:00

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

2009-02-11T09:28:00.000-08:00

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...

2009-02-09T19:37:00.000-08:00

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

2009-02-09T10:05:00.000-08:00

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...

2009-02-08T15:52:00.000-08:00

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!

2009-02-08T05:36:00.000-08:00

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.

2009-02-06T18:56:00.000-08:00

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...

2009-02-06T07:55:00.000-08:00

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

2009-02-05T05:39:00.000-08:00

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.

2009-02-04T06:38:00.000-08:00

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!

2009-02-03T12:59:00.000-08:00

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

2009-02-03T11:12:00.000-08:00

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!!!

2009-02-02T10:00:00.000-08:00

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

2009-02-01T09:27:00.000-08:00

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.

Checkin in

2009-01-31T18:03:00.000-08:00

Luke had so much more energy today and was able to get up and walk around the unit a few times and have a ton of visitors (thanks so much to everyone that came by). We are settling in for the night-Luke says he is going to make me watch Pink Floyd- The Wall....we will have to see about that. Just taking everything a day at a time but today was great and Luke seems to be feeling pretty good considering what all he has been through over the past week. Although each day will be different our hope is he has more days like today! Keep up the thoughts and prayers!!!

call light

2009-01-30T18:44:00.001-08:00

Ok so I am totally taking one for the team here--
Luke was attempting to get into bed with all of us doting all over him and between what Luke was doing and what I was messing with we managed to rip, literally rip, the call light in half. One half in my hand with exposed wires and the other half in the wall with exposed wires.
So far the nurse, the health care tech and the maintenance guy have come in and Luke has made sure to point a finger in my general direction and tell them it was my fault :)
gotta love it!

Friday evening January 30

2009-01-30T18:11:00.000-08:00

Everyone, Luke is doing good this evening. Was able to shower after his chemo and eat a little tonight. Has even had had a little to eat. He did commet that the MDA cheesecake did not compare to home. The good news today was was he does not have the "high risk" chromsome.

Passing along a shot of Luke and his tubular maze and with Kendall his personal nurse. Keep the prayers and good thoughts coming.

Chemo begins...

2009-01-30T14:04:00.001-08:00

Luke has received his first doses of chemo (2 meds) and is feeling well so far. He has been up watching movies or surfing the web....so far so good! One of the meds makes him pee red/pink and I know you all can only imagine how entertaining he finds that haha!

contact luke

2009-01-30T11:21:00.000-08:00

Hi All-
Just wanted to let you all know MD Anderson has a sweet deal where you can send Luke an e-mail or message and they will print it out and put it in a sealed envelope and deliver it to him. That way if any of you dont want to go through one of us (you are still more than welcome to do so). You can follow the link-hopefully it is right- and send Luke a note of encouragement as he begins his chemo today!
http://www2.mdanderson.org/sapp/contact/message.cfm
Update soon
Kendall

Lou-ass update

2009-01-29T17:50:00.000-08:00

Hey guys-
This is my first blog post ever so bear with me as I am not one with words! First of all I wanted to thank each one of you for the tremendous amount of support and all the prayers. Everyone has been amazing. I know we have said it a few times but visitors are more than WELCOME we just want everyone to be aware of Luke's increased risk of infection so no one sick should come, and also that his energy and pain levels change from one minute to the next so he may say he is ready for a visitor and then ask to have no one in the room when you show up. So please be patient and know that he does want to see you but the way he feels is constantly changing. Also- Beth had mentioned it earlier but I wanted to ask that no one call Luke on his phone (at least while he is in the hospital), the best way to chat with him would be to call Beth or me to find out if he is up for talking and then he can call you back or we can give him a message. We only say this because Luke has felt obligated to answer his phone when he is awake, even when he feels awful and he wont turn it off so it wakes him up. Please send him e-mails or chat with him online if he is on- or come by and say hi but right now please no calls to his phone.

The last few days have been crazy and I think we are all still in a state of shock....hoping to wake up from some sort of nightmare (although after receieving the diagnosis I am happy to say we are no longer sitting in a small hospital room in Miami where all we got was untreated pain and a bit of sarcasm from Luke). MD Anderson has been outstanding, the doctors met with us for over 3 hours yesterday and again today for over an hour, we have never felt rushed in our meetings or made to feel like a we are just a number. Today the doctor went over the "plan of care" as we say in the medical profession. The next month is going to be very intense but it is important for all of us to remember that this is a 3 year treatment process and Luke needs all the encouragement that we can all offer today and 2 years from now.

It was a day jam packed with procedures but Luke tolerated all of them well. He had a bone marrow biopsy in both hips, a lumbar puncture (spinal tap) and a PICC line placed. He also had an echo done to establish a baseline heart function and multiple Xrays. The first dose of chemo was given into his spine and was done during the tap but tomorrow he will start all the IV chemo. Just an FYI (as i was confused too) the chemo was given through his spine b/c studies have shown that at some point leukemia patients develop leukemic cells in their spinal column and/or brain so they do chemo on all patients prophylactically in their spine b/c it is not a matter of if it will happen but when.

When i left the hospital tonight Luke had a temperature and was in excruciating pain from his LP and intrathecal (into the spine) chemo. They are treating his pain well and apparently his pain should decrease as the leukemic cells get their asses kicked when steroids and the IV chemo are started.

We will continue to update (now that i know how) and keep everyone in the loop. Again- we want to really encourage visitors but want everyone to know this is a long battle and he will need more support than just this week. Feel free to call or e-mail Beth, Kate or me if you want to see or talk to Luke. We would love for you to contact us and don't hesitate to do so as we see it as a way the 3 of us can help Luke out and make sure his spirits stay high!

Love you all and thanks for all the prayers and support!
Kendall
kendallnovick@gmail.com
720 841 7749

Luke update

2009-01-29T13:15:00.000-08:00

They knocked Luke out for today's bone marrow and spinal fluid. As he came out from under the happy juice Luke's nurse was connecting up some monitoring equipment. For no apparent reason Luke gently extended his right hand and placed in on his nurses left cheek and said "you're an angel". His nurse then proceeded to ask him questions to check his coherence. She asked Luke what he preferred to be called to which he replied "anything is better than asshole". He remembers none of it but apparently his subconscious sense of humor remains.

Day #2

2009-01-29T10:30:00.000-08:00

It's about 12:30 in Texas and Luke is done with his procedures for the day and headed back to his room. In typical ladies man fashion, even under the influence of aneasthesia, the nurse working with him bent down to hook up is pic line and he caressed her cheek and called her an angel. I know this shocks you all.

I know many of you are wanting to visit Luke which is fantastic, we just need to lay a few ground rules and set some expectations. First, visitors are very much welcome, Luke loves you all and will love the support. And, let's be honest, I'm sure he'll love the break from his family. This first round of chemo is going to be the toughest and it will take a bit before we see his reaction to it, there will be days when he feels okay and days when all he can handle is a 10 minute visit and probably days when he wants nothing to do with any of us, please don't be offended it is nothing personal. Also (and this is the most important!) you cannot visit if you feel at all sick, no sneezing, headaches, cough, rashes, etc. My Dad pointed out that everyone doesn't need to rush to be here, this first month of treatment is just as important as month twelve or twenty, he will need all of you with him every step of the way.

Luke does have his phone and his computer but he is totally inundated with emails, texts and phone calls. Please know that he loves you all but may not respond right away or at all. If you are trying to visit please call/text/email Kendall, Dad or me. I will list our contact info at the end of this. Kendall and I will be in TX on a rotating basis and we're happy to play secretary for Luke, especially if it means he'll get to see his friends. If you feel like bringing him anything he'll be needing bandanas, scarves and (as Dad says) do-rags shortly....the more obnoxious the better.

Contact info:
Me - emnovick@gmail.com and 415-518-9505
Kendall - kendallnovick@gmail.com and 720-841-7759
Dad (Dave) - dmnovick@earthlink.net and 832-721-9810

Just a few updates....

2009-01-28T17:26:00.000-08:00

Hi All...So given the amazing showing of love and support our family has recieved, the sisters (with Luke's permission) decided it would be best to start a blog to keep everyone updated. I'll go ahead and throw it out there that none of us have ever done this before and we will not claim to be anywhere near the writer that Luke is. We promise to do our best to keep it current.

A little background as to the title, in case you don't know Luke, everything that is dumb to him he calls an asshat, and I mean everything from a friend, sister, and even Bailey our dog.

Here is the latest....

Luke met with the doctors this afternoon at MD Anderson. Following some blood work he was admitted to the hospital. His blood work was consistent with the original diagnosis of ALL (acute lymphoblastic leukemia). Tomorrow he will have some more tests done, these will give the doctors a better idea of exactly what we are up against. He will also have his pic line inserted which will be used to deliver his chemo which will start tomorrow as well. The first week or so of chemo will require him to be an inpatient, if all goes well he will be allowed to leave and continue treatment as an outpatient.

I just spoke with him on the phone and his biggest complant was being in the pediatric wing, I believe his exact words were "gay colors and arbitary shapes on the walls." He loves hearing from all of you and has mentioned that he is very excited to see those of you who have promised to stop by, so please do!

We are thankful for all your thoughts, prayers, emails, etc., please keep them coming!