I have the same panic reaction when doctors walk in. It reminds me of the short story "Lady or the Tiger" - a man has to open a door. Either a beautiful woman will emerge, or a voracious tiger. Keir had a rough night but did a relaxation breathing exercise we were give a cd for and that helped. The doctor was also reassuring in saying 90% of patients go home after induction therapy being successful. He can live with those odds, he seemed to feel much better. He knows that is only Battle One of this war - it's frustrating (I want a magic wand and a time machine..) but it is slowly sinking in. For all of you who have reached out to me - again, your words have been incredibly helpful.

The dietician came today and was kind; so far everyone has been most supportive. "We will get you through this" is nice to hear, because it's hard to imagine doing it at all. I'm filling out applications for SSDI and so forth for my son; he will have no income for the time being and I don't want him worrying about that. I'm having to have my carpet pulled up and basement walls replaced due to dampness and potential mold and am trying to do that. These things are something to take my mind of the illness, I suppose, though. But the scary times can be extremely terrifying and it's a godsend to have the messages here to "talk me down."

As ed and others said stay off the internet looking for answers. Theres a lot of misconceptions. The people on here including myself have been there and done that and can answer just about anything you wanna know. Your sons age is a big plus as Ed stated. The best thing you can do is support him and stay strong for him and WE got your back..

Lori,
You reminded me of one of my respiratory therapists and his teachings of breathing /relaxation techniques. He would always remind me that it all begins with breathing The techniques would completely put me at ease during my worst days and anxieties. I think it is just something I do now unconsciously.
While you are busy lifting carpets, etc. you sound like me. I was barking orders to my group from the hospital, but one thing I did find helpful was HEPA air cleaners. I know not everyone thinks you need them, but I sleep with it, have it in my family room and carry a portable when I visit -perhaps over the top, but I have become a germophobe. I also keep gloves and masks handy for when I go out, in my car, etc. I just like to be prepared. Again, over the top, but it may keep you occupied.
The SSDI forms are cumbersome, but can be filed online. I wasn't eligible, but your son should have no trouble.
Keeping Keir in my,prayers. Peace, love and hope always,
Andrea

Lori -- isn't this a great group. And they know their stuff too -- they have been through it. Stick on this thread and ask any question you want and you will get a very good answer -- maybe several. I remember getting my hickman a little over four years ago. Four years from now you and your son will look back be able to help others just as we are helping you now. I am just here to say it is not the end of the world ... it is not even the end of the world as you know it. Things will be rough for a while, but he and you are going to get through it. Take it one day at a time and listen to all of the great advice above. It is going to be all right. We are all praying for you, and you have some of the best medical people in the world there at Rush. Please keep us up on how things are moving forward -- dave

Keir is doing well so far. Up and eating well. He seems to take a lot of cues from me at the moment - he's an adult but I'm still "Mom" and this situation has been so unfamiliar and tough that sometimes I think he just wants to be a kid in some ways. So I'm trying hard to be what I need to be.

My biggest stumbling block is that I tend to get upended by "not good" news. An unusual or unfavorable test, you name it. I am having a bit of PTSD as well - I spent 18 months as primary caregiver for someone with metastatic melanoma and it was - just impossible. No good treatments (there are better ones now) nothing but almost all bad news all the time. Devastating.

Anyway - shaking that off - Keir is now at the "few days break" stage of induction therapy. I'm still freaking inwardly when a doctor walks in the room. He feels well aside from some moments of bad anxiety. He took an ativan and it knocked him out so he's a little reluctant to take too many but I told him that particular side effect might lessen. I am staying in the hospital with him for now which is tough but the computer makes a lot of difference. I have two online classes staring on Sept. 11 and am going to try to keep up with them; I am nearly done with school and having left work, thought I should keep occupied with that since there does seem to be a LOT of waiting. It will be hard to focus but maybe that is a good thing to practice anyway. Keir is usually so incredibly active - we are bringing in an air stepper (this floor is tiny and you almost get dizzy doing laps outside though it at least gets you out of the room) and we have small hand weights for him as well. He has his kindle, his ipod, his phone, his computer with Netflix (his degree is in film and video) so we're both learning to stay as busy as possible.

I keep waking up every morning with that three second window where I don't "remember." Then it falls on me, again, like a storm, and it can shake me up for quite a while. He tells me that happens to him as well. That is a hard thing. I hope time eases this.

Lori

I was diagnosed with AML in June 2011 and hit remission after induction chemo,proceeded with a further 3 rounds of consolidation chemo and have remained in remission,I was 47 when diagnosed.Statistics are just numbers and you dont know what side of the numbers you will fall into. Have faith that you and your son will get through this and your life will resume after you have fought and won this war against AML.
When I started my treatment my cousin,who is a doctor,bought me a journal which I wrote in during my 6 months of treatment.Sometimes as I wrote the tears flowed down, sometimes I laughed with the funny things that happen in a hospital.I still find myself re reading my journal today and it brings me great comfort to know I had the strength to beat this thing called AML.
Good luck

Lori,

I am a film producer and was an actor for many years in NY and LA. Please let Keir know that he has a survivor in his corner when he turns his corner. I look forward to talking with him if he so desires. I have been putting together some ideas with 2 people who went through transplant within a month of me. One of them was a winner on Survivor (the TV show) and is very active in Be The Match Registry, Let Keir know he is IMMEDIATELY part of our team. Look Forward. The days you wake up and remember it's not a dream are the worst, but eventually they go away, it becomes part of your life, part of your fight, and life continues. For some of us, we have found some real silver linings as well.

Ed

Eddie, could you send Keir a friend request on Facebook or some other way talk to him? He was due to film the behind the scenes on an indie film next week and would love shop talk. His name is Keir Challinor. Thank you so much for your reply and the wonderful encouraging words. He said he'd really love to communicate with you.

He's tired from the anti nausea meds but has been walking a lot and we watched a movie together tonight on his computer. Technology is an amazing thing when you are in this situation - how did people do it before?

I know I'm repetitive, but - truly - thank you all. When your child gets sick, no matter what age, all you can do is freak out, I'm afraid. I so desperately wanted a way for it to be me and not him. But now on to "Okay, this is what it is - now what do we do to get healthy again." It's been a week tomorrow and we're both still in one piece : ) You've all been a big part of that.

Lori....
Cant write too long know but PLEASE do not read nor research by yourself. I am 1 year and 9 months in remission and I still have to see a therapyst because of the shock of asking for statistics and reading stuff I dont understand, are outdated, or do not apply to my case.

Please focus on the age of your son, his health and the reality that AML, though sounds terrible, can be cured !

A must is a MD you really trust. This will save everybodies mind and specially yours. I feel my onco is another kind of father and his wife, who is my therapist, is another kind for mother for me... and whenever they both say "Dont worry" I think: if they do not worry, its OK

Focus on the cure ! And yes, this is maybe the worst moment, the worst phase of this roallercoaster. But we have survived and Im sure you all will

Will be following you.

Shimauta (Ana)

So many different emotions and concerns during the "average" day that it is truly like a rollercoaster. Most of yesterday, Keir felt very well and did a lot of walking, and we watched a movie and talked a lot. Last night, his Hickman site was bothering him and then he got a fever. And now we are waiting for his doctor to come in and see him. That is always nerve wracking; but we are trying not to let any one event or thing upend us too much. But that's a hard thing to learn.

I'm trying to summarize the "good" stuff from all your replies to remind him of. All types of AML can be treated. His age and otherwise good health are positives. He's in a good hospital. Lots of people on his "team." I remind myself of these things also. He got some visitors yesterday and that was nice. But the weeks ahead here are looming, and I find myself in terror moments with speculative thoughts - what if the induction therapy doesn't get the result they want? What if, what if - seems they are really infinite.

Small, odd things: I find little things strangely upsetting: rude or unhelpful kitchen staff, contradictory information, the sense that I'm bothering someone with a question. We are learning but it's a rough school.

Lori,

The "roughness" of the initial AML lessons has its positive and negative aspects. The negatives are obvious. The positives are the fact that all of this is new and before the true annoyance of a "speed bump" in the therapy sinks in, you are on to the next hospital adventure. I chose to look at my treatment that way, so the major annoyances were treated in the same manner as the minor ones - none became my focus.

The ancillary staff at a hospital are key to a patient's satisfaction. I loved the nurses aids, custodians, transport, and kitchen people. They were all polite, friendly, and willing to chat for a few minutes. They made my situation bearable.

The site of any foreign body (like a Hickman) is always a potential source of infection or a site where bacteria that are released transiently into the blood stream by such simple activities as tooth flossing and brushing can colonize. If the Hickman site is bothering him, I am sure the doctors will culture blood drawn through each of its ports to rule out infection.

Lori, fevers are part of what is expected in AML treatment, and the staff is always on the lookout for infections. So don't worry. As my doctor said to me at various points of my treatment..."It is not a matter of IF you will get a fever, it is a matter of WHEN you will get a fever.

Thinking about you and Keir and sending my love.

Cliff

I completely agree with Cliff. My pic line was pretty much infected every time I got one. I have FB requested Keir. Let him know Ed Vassallo is the guy requesting his friendship. Be calm mama. Do not fret. A team of great Doctors and a strong Keir is a powerful army to have for this fight. You will prevail.

Ed

Lori: Yes, it is a roller coaster at this point, but soon you will adapt to it and you will get in a routine. It does not really help much to tell you this, I guess, but don't think that this feeling will go on indefinitely. Try to get in a routine of when you are there and when you are dealing with other things. It is a new organization of your life, but as soon as you get into it and get used to it, you will be able to cope much better and will not seem so surrealistic. I am not saying things will become "normal," but any step in that direction will help at this point -- both you and your son. We are praying for you -- dave

Lori, the things you are describing are all very common when going through induction. Many of us have had these things during induction. Indeed, many of us have had ALL these things and more. Keir will overcome these common problems just like we all did. I think it is generally agreed that induction is difficult for everyone and for many, myself included, it is the worst part of treatment.

I don't like giving my AML resume unless I think it's relevant. In this case I think it might be. During my initial 51 days in the hospital I went through induction twice because the first round didn't quite do the trick. I caught just about every bug known including pneumonia and an infection at the site of that catheter they put in your chest. I ran fevers constantly and at several instances had to sleep on a cooling blanket because the Tylenol wasn't getting the fever low enough fast enough. I had a terrible reaction to the red chemo that they push (I forget the name) and it did a number on my heart. I fainted when the physical therapist was walking me. I didn't eat for about 2 weeks and dropped over 40 pounds. They sent me to the ICU for a few days and I really didn't think I was coming back. And this is only what I can remember.

So if these kind of things happen, remember I'm over 20 years older than Keir and I made it through. So will he.

Lou

Lori,
I had trouble with both catheters and my Hickmans. I had an allergy that took a week to surface to the cleaners they use to sterilize and clean the area. I have also had infections at the site, so no point speculating when it can be a variety of things.
Always something crazy.
And as everyone is pointing out . Fevers. Can be something. Can be nothing they will do all the cultures. My initial fevers began at about Day 6. Rough patch, but they will get Keir through it. I used ice packs a lot to help reduce fevers and increase comfort.
And, a big and, I was a hospital administrator. You are bothering no one. Do not accept rudeness, impoliteness and expect people to go out of their way or speak up. Be assertive. There is always a nurse supervisor and every department should be tripping over themselves to accommodate your family. We are in the service industry. No excuses.
On terms of if this doesn't work or that doesn't work, not to worry. There are loads of options. We are living in a wonderful time of research and knowledge. My motto, Never, ever give up.

God gives his strongest battles to his toughest warriors.

Praying for you all.
Peace,
Andrea