Bionic Man

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

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

Regards

Dave and Gayle

THANKSGIVING DAY

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

Luke is at it again

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

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

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

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

Finally Bailey says GO HURRICANES!

Wednesday October 13

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

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

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

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

Latest

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

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

Luke - High Maintenance Defined

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

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

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

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

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

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

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

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

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

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

Dave

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

Leukemia Sucks - September 16

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.