Today was a day we have been waiting for eight months to see...the first day of Long Term Maintenance!
Now some of you are wondering what does that mean? I thought you said he was done? I thought you said he was in remission? In this space I can explain it in more depth than on a quick Facebook update so here you go...
Are you done? In leukemia treatment the protocol calls for 3.5 years for boys(2.5 years for girls) of chemo. For OUR kind of leukemia, T Cell ALL, we have five stages in the Children's Oncology Group (COG) protocol; induction (29 days), Consolidation (eight weeks), Interim Maintenance (eight weeks with a hospital stay every other week), Delayed Intensification (six weeks), and finally Long Term Maintenance (The remaining time until our end of treatment date of 02/17/18). Each stage has its own specific kinds of chemo that are given, along with the mainstay of Lumbar Punctures (LP/brain and spine chemo) which was a part of every stage. Some stages had chemo pills for at home, steroids, as well as the infusions at the clinic, amongst other things.
Is he in remission? Yes by day 29 he had no detectable leukemia from the samples they took of his blood and spinal fluid PRAISE GOD! The treatment plan does NOT change. Just because it was not found in a small sample does NOT mean there is none lurking in his body. If left to itself those cells would rapidly take over again. The research they have done and trials they have completed have found that to eliminate the leukemia forever it needs to be treated for this long (longer in boys because leukemia cells tend to hide in their...extra parts...;) He never had any evidence of leukemia in his brain and spine fluid BUT often when blood is saturated with leukemia, such as Thaddy's was, the cells migrate to the spinal column. That is why they also do radiation on that area (Thaddy did not do this). We are immensely thankful that he has had no signs of CNS (Central Nervous System) involvement. Nonetheless, he will continue to have the LP's once every three months to ensure we keep it that way!
How do they decide how long treatment is? You calculate 3 years from the day you begin interim maintenance (those hospital stays) which for us was February 17, 2015. Three years later you are done!
What does Long Term Maintenance (LTM) entail? Thaddy will be on an 84 day cycle which will repeat until our end of treatment date. He will have a LP on day one, start a five day steroid pulse, have a push of vincristine in his port, and have a nightly chemo pill. The other days he will just take his nightly chemo pill, with eight methotrexate pills every Monday he does not get an LP (he gets methotrexate in the LP so you do not want too much of the stuff!) and five day steroid pulses and vincristine once monthly. That means ONE TRIP to the clinic a month!! After eight months of many visits weekly that is wonderful! We adore, love, and cherish all the staff at the clinic but face it four hour trips there stink!! More time at home and being normal makes EVERYTHING feel better!!
What were those shots? Thaddy was allergic to a chemo that was an essential part of treatment. The alternate was 12 shots for every one dose of that he needed. That was not fun but glad it is over and thankful he was NOT allergic to the shots as well. Some things extra stink! This was one of those things.
Prognosis? I know It is what you want to ask but are scared to. Before I knew about this world I would have thought, "wow, he still is getting chemo? Things must not be going well!" Well, rest assured things are going BETTER than good. It is just sadly the protocol. He has a 90% chance of survival. There is NO reason to think he will not be in that 90%. He has done so well on treatment. We have had NO hospital stays that weren't scheduled (A MIRACLE! Thank you prayer warriors!!). He has had NO side effects. He IS nauseous most days, I am not going to lie and throws up usually daily. That does not get in his way though. His immune system has held up, as has his blood level and platelets. Over all in what is a pretty scary battle we have had it easy. I give GOD all the glory for that! At a later date I will share some things we have done to support his systems through nutrition and exercise but I think this is enough for one day!! If you have ANY questions you've been wanting to ask please do. We are all about getting information out to people so they understand what our little warriors battle!