Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Dear friends- just got a call from Tonys doctor, there are 10% blasts in his marrow, indicative of a relapse on the horizon.
We are stunned as we had the best cytogenetics possible, 80% chance he wouldn't relapse and inversion 16, c-kit negative and no flt3 either!
I have no words right now but am looking for all of your prayers and knowledge as it looks like we head to another induction and then transplant.
We may switch hospitals as Rush medical centers head of transplant team just moved on to another hospital & his own doctor hinted we find the "right transplant team"
Anyone in Chicago on this site have input??? If we need to go out of state, we have the means and will do what ever we need!!!!!!
Please help, my heart has been ripped from my body
Xo
Lea
We are stunned as we had the best cytogenetics possible, 80% chance he wouldn't relapse and inversion 16, c-kit negative and no flt3 either!
I have no words right now but am looking for all of your prayers and knowledge as it looks like we head to another induction and then transplant.
We may switch hospitals as Rush medical centers head of transplant team just moved on to another hospital & his own doctor hinted we find the "right transplant team"
Anyone in Chicago on this site have input??? If we need to go out of state, we have the means and will do what ever we need!!!!!!
Please help, my heart has been ripped from my body
Xo
Lea
They let us do the trial chemo injections as outpatient bc his counts were stable, which means we had Easter and 5 more days with our daughter, it was such a blessing to get this time together as a family!
Thank you all got checking in, biggest stressor now is waiting to see if his siblings are a match!
Meanwhile I have signed up to be a stem cell donor as well as a ton of our friends as well. My best girlfriend set up an online youcaring.com
Fundraiser for us to alleviate expenses and it's amazing his giving prole, even strangers are!
I continue praying to god as well as asking my dad (in heaven) to continue to protect us and have our back
Please continue to pray for us and for a successful re induction and perfect match w one of his siblings
Xxoo
Julie
A message from Tony...
The gratitude that we have for the support and generosity through all of those that have visited and shared the website is unmeasurable and quite remarkable.
A special thanks for the Tobies for taking it upon themselves to put this together and ultimately facilitating support in a capacity that we had not considered. I usually see fit to help others and not be helped, this is exceptional.
Personally not being involved in social media, I am amazed at how interconnected we all are. We have not directly crossed paths in many years with some of you who have shown support, and I am touched by your concern and consideration. Those of you that have been close to us in the recent year, I appreciate your support once again as we embark on this long and tough journey.
This is the second time within a year that we will be enduring the hardships of this disease, which is a hard reality to accept. On this journey the stakes have risen as the process for remission is more challenging with a bone marrow transplant. Recovery is contingent on having a good match. We are praying for that match, and I will be engaging in this in the same manor I did on the first go at it, which was with strength and positivity.
I have been told that I am an inspiration, but I don't see it that way. I see it as I always have chosen to love life, engage in it, respect it, and attempt to have a positive experience with those that share it with me. My driving force is my daughter Izzy, bringing life into the world makes life worth living. To wake up every day and see it through her eyes, with her sense of excitement is a way to be present in the now. I will be doing what I can in the now to see those eyes for many days to come. Izzy is a strength for me and defines the word love- I tell her everyday that, "I love you so much, with all my heart, always and forever, and everything I am going to do is to fight for you, as my heart beats for you." She says in her sweet little voice, "Daddy...loves, I do."
With the first fight I never saw myself as a patient, never wore a gown, or turned on the TV. I was disciplined in my day, taking care of myself and fortunately, through a great employer, ATI, worked every day. I maintained who I was and will maintain who am I am through this fight in order to fulfill life's most important roles- as Daddy and husband, as well as son, brother, uncle, and friend.
The support I have through Lea is unconditional, as is the love I have for her- she is an unbelievable wife. Many thanks to her and our immediate family for all the support, as well as the support from my friends whom I consider family. We couldn't do it the first time without you, and will need you again.
Many thanks again for the overwhelming show of support. We are blessed to have all of you- those that have been there from many years ago, and those in the present with us while in this challenging time fame- you give us strength.
- Tony
That was such a beautiful post. Do not be stressed if your siblings are not good matches. My sister and brother were 50% matches and I got my bone marrow from a wonderful young man in Germany. I am doing fine with it. I hope you are feeling OK through the therapy. You have every reason for optimism.
Cliff
I'm still waiting for someone to say "it's a mistake Lea, it's not a relapse"
Packing out bags and saying goodbye to our daughter Izzy today was unbearable, she was so confused to see her daddy cry, she said "Daddy...boo boo?" And kissed his eye
Having gone through all of this before makes this even scarier, it seemed easier last time to not know the potential horrors that lie ahead. The doctors are still so guarded when they discuss his relapse, the whole mentality of taking it one day at a time is hard when you leave your two year old behind, all you want to do is look forward, to a future with her, one day at a time just doesn't seem like enough, not for the hopes and dreams we have for our family with her
I continue to pray to god and try to find my hope again, for Tony, he needs that from me and he deserves that!
I so relate to what you must be going through. With Tony just one month ahead of me in treatment with all the same genetics I must admit I personalize your plight. I know it must be scarier no longer ignorant of the process. Also I know I was in complete shock for the first three weeks. It is all a blur for me.
It is impossible to reconsile the one day at a time mantra expecially with children. I know I think about my daughters futures constantly. My DH is the most amazinf Daddy on the planet; however navigating maturation classes hormones, crushes, and teaching three girls to drive by himself is daunting. I read Tony's post and he is amazing. Please know I am praying for your family. Inversion 16 is one of the easiest to get back in remission per my med team. Having a favorable subtype is still a positive factor to hold on to.
May God grant you the peace that passes ALL understadning as you travel this new path. The Bible speaks over and over about Him holding our right hand and carrying us when we are weak. When we are weak, HE is strong for us. Hold on to that.
Julie
My prayers are with you. Please reach out to Fred Hutchinson Cancer Research Center in Seattle Washington. They saved my husbands life...we were transplated for CML in 1998 and still going!! Dr. Fred Applebaum was our in patient doctor.
Karen