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.

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LoriChallinor 02/03/2014

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.

planxty 02/20/2014

Hi Lori,

Thinking of you and Keir today

Planxty

LoriChallinor 02/21/2014

Thank you all. Keir is now Day +8 and has 100 neutrophils, up from zero. He is hoarse but much of the soreness in his throat has been dealt with by the use of fentanyl patches. Tonight he is getting some blood and platelets. He is eating quite well and adhering carefully to the bmt unit rule of sixty minutes of exercise daily. He is being careful with oral care, and just trying to get through things day by day. Diarrhea has been an annoying problem but no C-diff, so that was good.

We are all fatigued - this is quite a tough process on the whole family - but most days Keir has been able to enjoy a movie or watch t..v. or use his computer. We have been pleased with the nursing care at Loyola and that has made a big difference. I need to start getting the house ready for his homecoming as the doctor indicated it may be at some point next week, which seems hard to believe!

Taswegian 02/21/2014

Wow Lori, Keir must be rapt! He's ahead of me and I didn't have immuno suppressants - go Keir :) It is D+10 and my neuts are 0.1 also. Mouth continues to be a problem but find systemic iv panadol and cocaine mouthwash just before eating has enable me to keep nutrition to a level docs are happy with. Have only lost 2 kilos (bit over 4 pounds) from basline weight and came in carrying extra so feel fine with that.

shimauta 02/22/2014

Dear Lori:

So happy about Keirs results. He is so young. And AML can be cured! So happy to hear about a possible trip to your home !

Please take care of yourself. Blessings

Ana

dbrowncsuaedu 02/22/2014

Tas and Lori -- great to hear you and Keir are both progressing in a very comparable way. GREAT news from both of you. Side effects will be aggravating, but they will be gone before too long as the numbers come up. Please keep us up with your progress -- dave

Noodle65 02/22/2014

Such great news from Tas and Keir!!! Please know you are in my prayers for uneventful, boring recoveries and parole from the hospital soonest.

Blessings,

Julie

LoriChallinor 02/28/2014

I just wanted to say that Keir is doing well. He went to clinic yesterday and his counts were improving and he did not need blood or platelets, only magnesium. Still very little appetite but he's only been home since Tuesday evening and we are told patience is needed. It's hard to believe, at times, especially in the midst of such sad events on DS, that healing is also a part of the AML experience but there are many many here who will attest to that. At this point, Keir is also healing. I am grateful for it and grateful for all the support I've found here. Thank you all.

Noodle65 02/28/2014

Such great news Lori!!!! We are all healing physically, emotionally and spiritually. Praying for your family.

Blessings,

Julie

shimauta 03/01/2014

So happy to hear about it Lori ! You have given a wonderful morning present this saturday that begins, with your words ! Sooo happy.

BLessings

dbrowncsuaedu 03/01/2014

Thank YOU Lori for bringing this great report at a time when we really need some good news. It is just so great to hear that Keir is doing well. Yes, it will take some time. I expected once they sent me home that I would just go out and do what I always did. Not. I can recall the first time I went out and tried to do anything physical -- it got me in five minutes and I knew if I did not take it easy I was going to pass out or something. It is important to know your limits and to feel when you need to back off and rest. I know how much Keir enjoys exercise and they have been keeping him active, and he is so young, so I would not expect him to have as much of an adjustment period as I had (or perhaps am still having four years later). Will be in touch -- dave

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