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.

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.

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

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

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

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

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

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.