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.
Last night my daughter stayed with Keir. It was a nice break for him. While sitting here I am praying for all of you, including those we are missing, and hoping we will hear from some of the 'veterans' soon. For those of us who are relatively new to this, the wisdom from those who've been down this very rocky path is invaluable.
So glad to hear that Keir is on his way. I know our timelines have been running so close with Keir and my husband Harry. I so get what you mean when you said the wife of the other patient crying when they left. I felt that yesterday when my husband was released. So happy to get him home, but scared that he could have a complication and not have a doctor or nurse right there.
I am sending good thoughts and positive energy to you, Keir,and all the other 2014 Transplant Team members (along with everyone here). Please keep us posted on how Keir is doing. I can't wait to hear that the has been released as well.
Be well!
Colleen
Yep, due to get transplant next Wednesday also so I will very much be thinking of Keir that day. Funnily enough, I had slight nausea upon waking this morning but nothing that a bowl of all bran, pancakes and toast didn't fix :) My twin sister arrives this morning with my mum which will be nice as already feeling the sads a bit as my husband and daughter go back home tomorrow :) Sidney (daughter) will be coming up as many weekends as we can arrange people to transport her which has been a good compromise for her. Whilst I am again allowed night leave from the hospital, the second chemo requires lots of fluid to be administered with it which they want to start at 6.00am!!! I'm not a great morning person but my husband assured the doc that even if he had to stick me in a wheelchair fast asleep he would get me here on time :)
My mom has been totally devoted to caring for my dad throughout the ordeal of his treatment - yet, has never slept at the hospital (she stayed at our house in Boston, which is about 2 miles away from the hospital), and even in the midst of the long stretches of time when she was there all day, every day, would slip out every once in awhile to see a movie, or treat herself to lunch someplace. Please know that I am not being critical of your devotion to Keir at all - we should all have a mother as attentive and loving as you are! :) I just want you to know that I hope you are taking good care of yourself, even as you are as involved as you can be in supporting your son.
Lots of love,
Robin
It's a problem that a lot of caregivers have but there are no easy solutions. I don't feel comfortable leaving Keir alone at this point and he is uneasy being left alone overnight, when he sometimes needs some support. I did get a cot from home so I can sleep horizontally at least - the past week I've been in the recliner chair and that was not a great situation. I am just not sure how to resolve it and find a balance. I do keenly wish I had a big supportive family or local friends who could help, but that's not how it is. Feeling isolated is a huge problem, but nothing compared to the anxiety.
So excited for Keir that it's donation time, I know how scary and exciting this is after just going through this with my husband, Harry. It will be 3 weeks on Thursday since he received his transplant and I can tell you, as you were advised to expect him to be very weak after the transplant, but it does get better. My husband is doing much better, especially in the past few days. Even with the fever that sent him back to the hospital, he was feeling better, he just had the fevers. For me I has to mix a little cheerleader with being a wife, I would ask him what I can do to help and would give him a big "cheer" for walking, eating, etc even when I know it was the last thing he wanted to do. I would tell you it was hard for me to see him sleep so much, that happened the most during the first two weeks after, if he went for a short walk, he would sleep, after he showered, he would then sleep. I finally figured, he is eating (little as it was, he was eating) and walking, showering etc. Baby steps back to life with the new cells. It's a whole new beginning. Slow and steady win the race and Keir is lined up at the gate to get going!
Sending you both good thoughts for strength and endurance for the coming weeks/months.
Colleen & Harry
Ben and I are thinking of you, today. Tomorrow is the 'new birthday,'
for Keir. You have gone through so much together to get to this point.
Remember, you are very much a part of a big supportive family, here.
I may not post a lot, however, you and Keir, are in our daily conversation and thoughts.
it will go well tomorrow. I was surprised, at just how unevenful the whole thing was, when Ben had his transplant 16 and a half months ago. As Phil says things always crop up, but Keir will handle it in stride.
Remember, take it one day at a time. Did Keir get radiation? I was wondering if they are still giving radiation for pre-conditioning.....
Lori please take care of yourself also, this will be the start of a new episode for you both. There will be anxious moments but as the days turn into months, things should get better and better. Remember a little gvhd is a good thing.
our family will be praying for you both this night and send you our lloving thoughts, Both of you get some rest.
Peace and love,
Sandra and Ben
Love and best wishes for his complete recovery -
Robin
Tell Keir I am thinking and praying that all goes well. I remember when my "cells" were received, my RN said a prayer over them as she hung them up. It did all go smoothly, which I was thankful for. I tried to keep things to sort of a routine, shower everyday, do my laps, eat, mouth rinse , sleep, do my laps, eat , mouth rinse........................rest. I was not one to read, I like to read but it was hard to focus. I mostly watched netflix, and played cribbage or other card games with my family. I think everyone is different, but I did need my alone time, to either sleep or just be. I slept better if I was by myself, what ever you are most comfortable with. My husband made sure he was there in the morning to listen to rounds and help me shower, then walk, but he had to go home in the afternoon to take care of our son. Then usually my parents would visit, it just fell into a routine. I had some nausea, but the fatigue was the worst thing. Making sure I showered and walked seemed to help the most. So excited for you and Keir, kicking AML to the curb!
Take Care,
Suzanne
It's all about to happen. Remember Lori there is always the speed bumps nausea ect but it's all do able. I'm so happy he is getting his cells on the 13 th I had mine on the 13th I'm 18 months today. There's a. Good omen for Keir I check in on him on my 18 month birthday and it's now going to be his.
Prayers for Keir
Planxty
Go Team Transplant 2014
Colleen & Harry