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.
I realize what an awful and sad time on the board this is and hesitate to post but wanted to update people on the situation with my son, Keir.
Pending final donor clearance (he just got his physical late last week) Keir enters Loyola Medical Center tomorrow to begin the prep for his bmt. His donor is a 10/10 match, unrelated. I don't know where he is from or anything other than his age, 22.
It feels very unreal. I will be honest and say I am so terribly afraid. Even though this is the goal we fought hard to get to, it is frightening and the thought of both of us spending at least another month in the hospital is quite overwhelming. Keir is holding up and trying to stay focused on the end result. His mom is wondering how I am going to drag us over the finish line and hoping the staff is very supportive.
I would welcome all words of support, chat, encouragement. It is a lonely thing to sit in the hospital room all day as all of you know. I don't have a lot of IRL family or friends around and like many of you know, many of them tend to disappear when situations like this arise. So please message me etc. and I will keep everyone updated. Please pray for Keir. He has been so brave and positive. While I would be in pieces inside, he was steadfast and just focused on "getting through it." He has never once expressed anger or bitterness that this is happening to him while his friends are going on with their lives as young adults. He has tried to be cooperative and friendly and thoughtful with all the hospital staff; not impatient as I sometimes get. I am so proud of him and love him so very much. I have no answers as to why this happened to him or any of the people reading this; only the hope that together, we will make it through.
Pending final donor clearance (he just got his physical late last week) Keir enters Loyola Medical Center tomorrow to begin the prep for his bmt. His donor is a 10/10 match, unrelated. I don't know where he is from or anything other than his age, 22.
It feels very unreal. I will be honest and say I am so terribly afraid. Even though this is the goal we fought hard to get to, it is frightening and the thought of both of us spending at least another month in the hospital is quite overwhelming. Keir is holding up and trying to stay focused on the end result. His mom is wondering how I am going to drag us over the finish line and hoping the staff is very supportive.
I would welcome all words of support, chat, encouragement. It is a lonely thing to sit in the hospital room all day as all of you know. I don't have a lot of IRL family or friends around and like many of you know, many of them tend to disappear when situations like this arise. So please message me etc. and I will keep everyone updated. Please pray for Keir. He has been so brave and positive. While I would be in pieces inside, he was steadfast and just focused on "getting through it." He has never once expressed anger or bitterness that this is happening to him while his friends are going on with their lives as young adults. He has tried to be cooperative and friendly and thoughtful with all the hospital staff; not impatient as I sometimes get. I am so proud of him and love him so very much. I have no answers as to why this happened to him or any of the people reading this; only the hope that together, we will make it through.
I am so glad you posted this morning. One of the very many things that Andrea taught us was how important it is that we ask for what we need - you are anxious and afraid, and you need to be reassured. Those needs are very real, much like platelets and blood are for for those suffering with AML. We are here for you.
I am feeling such excitement for Keir now! One of the things that was so disappointing, and so anti-climactic about my dad's situation was that here he had a perfect 10:10 match from a healthy young man (he teased us relentlessly about what he expected to be able to do once he was 25 again, lol!), but was unable to use it - twice! Your Keir is strong mentally and physically - and in the best possible position to put AML behind him and return to good health. There is every reason to think he will overcome this. Will be thinking of you both over these next days - will you remind us whether he is doing the "mini-transplant", or the full?
Thanks,
Robin
Keir will be doing the full transplant. His MUGA scan showed his heart e/f at 55% so he is cleared for that.
Thank you so much for providing an update on Keir-such great news on his MUGA scan!!!! Although I have not had a BMT, I truly empathize with the conflicting emotions. BMT is the holy grail cure for AML; however, the potential complications are scary. If I relapse, I will aggressively pursue a BMT-no question. Before I found this amazing group of warriors, I was paralyzed at the thought of transplant. Now I "know" multiple success stories I am confident that I could fight and win the battle.
So will Keir!!! He is young, healthy, has an amazingly positive attitude, has ALL of us praying for him and most of all, he has the most tenacious committed Mother on the planet. Even at 48, there were many days I needed my Ma (she passed away in 2010). Having your constant love, support and care must be such a comfort to Keir. I admire your connection, love and commitment to one another.
Keir will be cured and will live a long and happy life. That is my families prayer for yours. Please keep us posted.
Blessings,
Julie
You aren't alone. We are ALL with you and Keir in this journey. We would be there in the hospital room with you and Keir if we could, please know that! I'm so glad that you posted today.
Sal will soon be joining Keir, I believe, as he will be coming home from the hospital today! Since he has a donor ready, his sister, it is possible that he will be able to go to transplant very soon (and skip a round of consolidation). We haven't met with the transplant doc yet, but that will happen soon.
Keir is young and strong, and he has a very young perfectly matched donor. This is fantastic! I have been praying for Keir, and you can bet that I will continue to do so.
Love,
Monique
You will probably all get tired of hearing from me, but thank you all very much.
I'm so happy that Keir is finally ready for go. We are all with you and are here to share you anxiety and worry.
Remember the speeds will come but they will also go, so you take a big deep breath and get ready for take off because here comes the cure for Keir.
Planxty
Take Care,
Suzanne
Keir got his first dose of busulfan a few hours ago - another hour or so to go. So we are nearly done with day "-8". He is in good spirits; I am very proud of him. He is somewhat worried about the commencing of the side effects but is determined to plow on through whatever shows up.
sending good thoughts
Colleen
So happy to hear that Keir is tolerating the busulfan well-he is such a strong example for all of us. I am sorry you don't have a more friendly staff. I had nurses that routinely "hid out" in my room to chat-they are like my family. You two have fought so hard to get to this point-the cure is just around the corner. My family continues to pray for yours.
God Bless You Both,
Julie
I'm sorry about the loneliness right now. After 32 days in the hospital, Sal came home after his reinduction after relapse on Monday. Sal had been in a specialized isolation ward, which took me a while to get used to. You needed to go through two doors to enter Sal's room and I rarely saw another patient (or family member) even though the ward was full. It was very quiet. Luckily, Sal's room had a lovely garden right outside the windows and we opened the blinds completely. The nurses were also very busy and all business, but they warmed up after a while. I think (and hope!!) that it will get better for you and Keir as you and your nurses get to know each other better over the next weeks.
Big hugs to you and Keir,
Monique and Sal
I completed my 4th day of busulfan today (2 x half doses and 2 x full doses) and so far have still managed to escape the nausea. My final dose is tomorrow and then the day after is my lockdown period in the hospital with the second chemo to start :( At least with my induction I could leave my hospital room to sit outside and have a coffee etc but this time it's a definitely no. I miss the staff back home as they were all so friendly and even the aides would pop in for a chat. It's only early days yet with the transplant team and I'm sure they will be just as lovely once I get to meet them all but understand the transplant environment is a bit more intensive than the oncology ward back home but I'm sure Keir and I will both be in great hands. I too will have my mother coming to stay as my main carer - even at 49 you still need your mum :)