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Text of the page (random words):
ofessionals why still chemo at this point the patient is judged to be in clinical and hematologic remission although the term remission much loved by hematologists and patients refers only to a somewhat arbitrary point toward one end of a continuum of leukemic cell numbers translation of the above when you consider that we have millions of cells in our body even with 0 01 or less of them being leukemia that s still leukemia cells and the problem with cancerous cells is this they divide which means they multiply so if even one miniscule little leukemia cell is left unchecked in meg s body it will become two which will become 4 which will become 8 which will become you get the picture so chemo must go on why still high risk although doctors know that clinical remission does not mean that the disease is eliminated the term still has value as a prognostic factor in treatment for example careful studies have determined that patients that do not go into clinical remission by day 14 of treatment are at higher risk for relapse and therefore these patients called slow early responders enter on a more intense treatment regimen rapid early responders are able to complete a less intense treatment protocol translation of the above because meg s leukemia did not go into remission by day 8 which is the expectation or even by day 29 of treatment she was placed in the very high risk category this does put her at a higher risk of recurrence and therefore they continue to leave her on the very high risk treatment plan she will continue on this plan for the entirety of treatment once you re very high risk you never get to go back i hesitated to write this because i know it kind of sounds like a debbie downer post but this is the truth of it and i wanted to be able to clear up any misconceptions but please don t misunderstand me or this post and please know we are so very grateful that even though it took some time things have turned around the chemo is working meg is still in amazing spirits and feeling great and we recognize the hand of the lord in our life everyday thank you for your prayers they helped us get this miracle that we needed that s truly what it is a miracle posted by lisa marie at 10 45 pm 1 comment friday june 19 2015 phase 3 begins after two weeks of not making counts and not being able to start chemo we were all feeling really ready to just get this show on the road meg was scheduled for a cbc complete blood count on thursday to see where we were at week one her anc count that represents her immunity was completely bottomed out at 200 the next week 300 so i was really nervous that at that rate it d be another month before we made it to the required magic number 750 wednesday night i slept terrible i kept dreaming that her anc came in at 600 and i was begging our doctor to please just let us start so you can imagine my complete surprise when her anc came back at a whopping 1200 it s like heavenly father was saying i ll see your 600 annnnnd i ll double it once again i m reminded that heavenly father is in the details and he is mindful of me meg and our family so because we made counts at 5 30 this morning meg and i were off to salt lake city we arrived at 9 30 checked in at clinic to have her port accessed and then headed to rtu rapid treatment unit for her bone marrow aspirate and lumbar puncture chemo we should receive the results of the aspirate middle of next week this is the big test that will tell us if she still has residual disease we are praying praying praying that it comes back 100 clear reminder if it doesn t we re looking at bone marrow transplant so we ll accept your offers to pray pray pray too after making a quick detour to the cafeteria for our traditional friday chips and salsa it s delicious and makes friday s at primary s just a titch more bearable we headed up to the unit to get checked in and settled for the next few days it s now 10 00 p m and meg s hooked up to the most hugangous bag of chemo you ve ever seen and trying really hard to keep her eyes open to finish diary of a wimpy kid the movie she s worn out from our early start and a busy busy day you d think being in a hospital would be lots of sitting around and taking it easy not when you re in the hospital with meg we played for a few hours in the forever young playroom made 2 duct tape wallets 3 batches of silly putty and walked lots of halls of the hospital meg s responding to the chemo really well so far she s had an only okay appetite but that s fairly normal for meg i m guessing and hoping that she s going to sail through this treatment like she has all the others the hardest part will be the requirement that she go to the bathroom every two hours minimum even through the night the whole time we are here i swear nurses love to wake their patients sheesh so we ll probably come home more exhausted than we left but that s okay it ll be kind of like having a newborn again and we survived those years we ll survive this too thanks for your prayers g night posted by lisa marie at 10 06 pm 2 comments wednesday june 10 2015 i am mindful of you last week after meg didn t make counts i was so angry we wanted to start treatment for a few reasons this phase she will be admitted every other friday so if she started last week she d be home and able to attend relay for life this weekend her favorite nurse britt works every other weekend and would be there the same weekends as us and we d be in town for sirri s play at the end of the month not to mention we really just want to get this show on the road the sooner you start the sooner you re done meg had been praying her little heart out for two weeks that she d make count and i was praying my heart out that a deserving little girl s prayers would be answered so when they weren t i was mad i felt frustrated and upset and confused why do we even pray if heavenly father s will is just going to happen anyway i know that his plan is always best for us and he knows what we need so why pray i ll just let him do his thing i was angry for two days and on sunday decided it was time to let it go but i knew i d need help so i made it a matter of fasting i knew it was what i needed to do so i reluctantly got on my knees and did what i didn t want to do i prayed as i pored out my heart and prayed about my frustrations and questions a very distinct thought came to my mind i am mindful of you those five words reminded me in that instant that i have always had a testimony that my heavenly father knows me personally and he loves me this testimony has carried me through many hard times there are many things that i don t understand and plenty of questions that sometimes confuse my mind but this i know my heavenly father truly is mindful of me i went to church and attended my sister in law s sunday school class i couldn t believe it when she began a very beautiful and touching lesson about prayer some of the things she said and taught gave me a little more insight into the questions i had prayed about just that morning heavenly father was answering my prayers in a way that i could not deny after sunday school relief society was about to begin and sister choffin began passing out little slips of paper with short phrases on them she passed out a total of 17 of them to various women and she d have us read them as part of her lesson she came towards me and handed me my piece of paper i graciously accepted it looked down to read it and could not believe my eyes my slip of paper had only five words on it i am mindful of you i still don t perfectly understand prayer i still wonder why i can t just let heavenly father do his thing i m still bummed out that it didn t work out for us to go last week i m still a little frustrated that my sweet 8 year old s prayers weren t answered the way we thought they should be anyway but this i know heavenly father knows me he loves me and he is mindful of me and for now that is enough posted by lisa marie at 10 35 pm 2 comments phase 2 waiting to start phase 3 the second round of treatment she no longer had to be on steroids but continued the weekly trips to slc this phase lasted two months so by the end of may we made 11 trips to slc it would ve been 13 but we actually got two weeks off two weeks of every month this phase we also had to have chemo at home through home health this month meg felt really pretty good but did throw up twice the first time she threw up was kind of a funny story i ll share that another day other than her bald little head you really wouldn t even know she is sick she really is amazing right now we are waiting to start her third phase the start date of this phase is count dependent meaning all her blood counts have to be at a certain spot to begin treatment two weeks ago her numbers were the highest they had ever been and we were just sure she d start the next week but as we are quickly learning you never guess or assume with cancer because you ll probbaly be wrong and wrong we were last thursday meg had her cbc complete blood count and her anc absolute neutrophil count was actually the lowest it had ever been sooooo we wait tomorrow morning we will have a cbc again and see where her numbers are we are anxious to begin this new phase because it s a biggie meg will be admitted to the hospital and have high does methotrexate chemo that will run for 24 hours the longest chemo she s had yet has been two hours so we are nervous to see how this goes we will be in the hospital for an average of 3 4 days while there they will run another mdr test and see what percentage of cancer is still remaining again it needs to be below 0 01 if not the next step will be moving towards a bone marrow transplant but we have all decided we just aren t going that route we re going to remain positive just as absolutely long as we can posted by lisa marie at 9 45 pm no comments induction phase 1 the first month of treatment she was on steroids and weekly chemo treatments in slc the steroids were a bear and wiped meg out she was tired and starving all the time and her bones and whole body just ached after she had chemo on fridays she would be down for the count for the rest of the weekend she d start to perk up about tuesday or wednesday just in time for her to have chemo again on friday this was a heartbreaking month it was devastating to see our usually busy won t slow down kind of child so run down during this first month meg also began losing her hair i d help her wash it in the tub and would have fingers full by the time we were done one monday night after it had thinned significantly and was looking pretty bad she decided that she just wanted to shave it all off my sister in law heidi called a family friend kaitee banta her grandpa was jay banta who was kendon s dad s best friend all growing up kendon played baseball for him hunted with him and connor s middle name is jay after him and has alopecia she has not had hair since she was about two she is now 15 she came over and talked to meg about being bald and that different is cool and that bald is beautiful she was such a blessing to us during this difficult thing to do she gave us all such peace and hope that it s just hair and it will be okay kendon shaved meg s head while we all say taylor swift s shake it off it was heartbreaking and powerful all at the same time but kaitee was right bald is beautiful and meg really rocks it at the end of the first phase they ran another bone marrow biopsy to see how much residual disease she still had in her body her numbers should have been below 0 01 the first phone call we received they said that her percent was at 8 but they couldn t imagine that was correct we prayed that it wasn t so we had to go back to slc on a week we were supposed to have off and redo the biopsy 4 long days later the results came back and she was at 0 7 still not good enough so bumped again now to very high risk i didn t even ask what this means for her prognosis posted by lisa marie at 9 39 pm no comments minimal disease result mdr after the first 8 days of treatment a minimal disease result test was run this test shows how much cancer is still present the number expected hoped for is less than 1 meg s results came back at 2 5 this unfortunately means a few things 1 her body was not respodning to the chemo like it should have been 2 she was moved from a standard risk patient to a high risk patient 3 additional higher dose chemo 4 higher chance of recurrence 5 lower cure rate down to about 80 instead of 90 at this point we were still trying to process her diagnosis and felt a bit lot taken back by this news but still optimistic if anyone can fight the fight it s megatron posted by lisa marie at 9 38 pm no comments cancer again i guess the biggest or most life changing event that has happened in our life recently is that our family is facing the battle of cancer again i have been documenting this journey on our instagram account but will continue to tell the story here here is the quick not really rundown version of our last 3 1 2 months on sunday february 22nd meg age 8 showed me some funny red spots that she had on her arms and legs they looked like teeny tiny little bruises i thought of those funny spots throughout the day and made me think of a few other weird symptoms meg had been having over the past two weeks i thought of a large persistent bruise on her shin that would heal and then come back i remembered a time the week previous that meg had come home from school and said mom i crashed in p e today what she meant was she was too tired to finish p e that day after talking to kendon he mentioned noticing that meg hadn t eaten breakfast the last few days putting all these things together we decided that we d better take her to the doctor i scheduled an appointment for tuesday after school and our doctor gary sena ran blood work on wednesday afternoon at 4 45 gary called and asked where i was i told him that i was at home he asked if kendon was there or if i was alone as soon as he asked me if i was alone i knew it wasn t good news gary told me that meg s white blood cell count was abnormal and that we needed to head up to the e r as soon as kendon got home i know enough about cancer to know that an abnormal white blood cell count probably meant leukemia i asked gary if that was what he was implying and he said i m so sorry yes gary is the doctor that discovered sirri s cancer as well and my heart aches for that poor man having to deliver such heartbreaking news to one family twice we love gary so much fifteen minutes later kendon was home and off we went to the hospital we ve been living eating breathing sleeping cancer ever since we spent the next 7 hours at madison memorial hospital and at midnight we left for primary children s hospital we arrived at 4 in the morning and got about 3 hours sleep ha before the doctors started showing up and blasting us with information my mom arrived that afternoon and as always it ...