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!!!!