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.
Thursday, November 26, 2009
Wednesday, October 21, 2009
Luke is at it again
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.
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 14, 2009
Wednesday October 13
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.
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.
Friday, October 9, 2009
Latest
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.
Expect he will be playing at Rudy's Saturday night for anyone wishing to attend.
Wednesday, September 23, 2009
Luke - High Maintenance Defined
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!!!!
Wednesday, September 16, 2009
Leukemia Sucks - September 16
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.
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, September 7, 2009
Monday
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!
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
Wednesday September 2
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.
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.
Sunday, August 30, 2009
August 30
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.
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.
Saturday, August 29, 2009
August 29
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.
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.
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
Wednesday August 26
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.
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
Wednesday August 19
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.
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.
Tuesday, August 18, 2009
New chemo
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
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
Monday, August 17, 2009
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!
Wednesday, August 12, 2009
Asshat Update - August 12
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.
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.
Tuesday, July 28, 2009
Update July 28
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.
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.
Sunday, July 19, 2009
Things are Good
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.
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.
Wednesday, July 8, 2009
Luke update - at Rudy's Saturday July 11 6:30-9 pm
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.
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.
Monday, June 29, 2009
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.
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.
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.
Saturday, June 13, 2009
June 13th update
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.
.jpg)
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.netAttached 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!
Tuesday, June 2, 2009
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.
a>
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.
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.
a>
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.Sunday, May 31, 2009
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
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
Thursday, May 28, 2009
.jpg)
Saturday, May 23, 2009
Asshat Update
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
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
Wednesday, May 20, 2009
Vacation Over - Next Round of Chemo Starts
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 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.
Saturday, May 16, 2009
Luke Novick Leukemia & Lymphoma Society Benefit
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
· 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
Thursday, May 14, 2009
Blood Drive Information
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.
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.
Wednesday, May 13, 2009
Vacation Extended
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.
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
Friday May 8
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.
Wednesday, May 6, 2009
Time Off from Chemo
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.
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.
Saturday, May 2, 2009
Last Harpoon Monday; Week Long Respite from Chemo Starts Tuesday
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!
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.
Monday, April 27, 2009
Harpooning season open one more week
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.
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.
Wednesday, April 22, 2009
MDA nurses need to double team Luke!
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.
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.
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!
Monday, April 20, 2009
April 20
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?
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, April 15, 2009
Wednesday Post-Clinic....
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
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
Monday April 13
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.
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.
Wednesday, April 8, 2009
Blood donation
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
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
Tuesday, April 7, 2009
MAY 30TH 2009
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
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!!!
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
Sunday April 5
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.
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.
Thursday, April 2, 2009
Wednesday, April 1, 2009
Update from Spa MDA
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.
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.
Subscribe to:
Posts (Atom)
Posts
