Lori,
Ah yes, the fluids. Nothing like having to run to the restroom every 30 minutes or less. Glad to hear he has made it through induction and hoping for good results from his BMB. I'm happy to answer any questions you and Keir might have. I recently went through induction myself (diagnosed July 25th, started chemo the next day).

Jen

Thank you Jen, it is very kind of you to reach out when you are dealing with this so newly as well. How are you coping with the uncertainties? That is one of our greatest challenges right now. I want to ask the doctor - "But will he be okay??? Will he be able to have a real life again?" - the questions that we ask ourselves in secret. "What if, what if ...."

Waiting for the results after induction has been the hardest part so far and I had days I wanted to scream at the Dr. "Just tell me I'll be alright not about the 50 other treatment options I might have to have."

I had to take one day at a time and focus on what I needed to do that day. For me that was making sure I ate as best I could (no appetite and the hospital food didn't help) and exercising when I could (I named my IV pole Bob and took him for "walks" around the floor). My induction went pretty smoothly and I didn't develop fevers or infections so I was lucky. I had fabulous nurses who always answered any questions as best they could and that helped. I watched a lot of mindless TV (you can always find one of the law & orders on anytime of the day!) and took a lot of naps in between runs to the bathroom. Normally I love to read but I found it hard to focus so I didn't do much of that. I had times when I wanted to visit and other times when I needed to be alone, mostly so I could nap.

Not sure if any of that helps. It sounds like things are going well so far and I wish both of you the best of luck.

Jen

Lori,
Uncertainty is a fact. Once diagnosed, I don't think the uncertainty disappears, soon if ever. My husband always wanted something. I remember my first meeting with my transplant doc and after getting many doom and gloom possibilities, he straight out asked her if I could be cured. She pulled no punches and said, "I believe we have a reasonable shot." She is my transplant doc and has become quite my ally. Everyone around me wanted that assurance. My employees, my mom, my siblings, my husband, kids, neighbors, physicians I worked with for more than 30 years, everyone wanted to know. I, apparently was their 'unbreakable'. For me, I was reminded last evening by my 22year old daughter, who said the first time she saw me after I was admitted, she said, mommy, I am worried and apparently I said, no worries, I am one tough "bit..h). I do not remember saying it, but I do remember telling myself there was no way I was letting this beat me. I have never looked back.

I have seen people suffer chronic illness their entire life and I view leukemia very much the same way now. I think I will be cured, that is a fact, but I also think I will always question, but what if. It is normal. We are humans. Trust that Keir will be cured.

Keir will enjoy communicating and talking shop with Eddie. We all seem to have something in common with him. He is a remarkable guy as is every person on our site. Some of the most generous souls here share their stories and lift us when we need it most.

If Keir starts to lose taste or weird symptoms begin appearing, no fear, they go with the territory of induction.

As a mom, I am keeping you close to my heart and in several thoughts and prayers throughout my day. I wish you peace daily. You are a rock.
Andrea

Thank you - I read and re-read all the replies and they are all extremely helpful. I can handle "chronic illness" I think - I certainly hope and pray for a total cure but have an aunt who has been on dialysis for 8 years and is still fighting on and enjoying every day between treatments.

I have been in such a state of shock and know that's expected. I'm alone here in the hospital with Keir, my husband tries to stop in when he can but he can't too often due to his work schedule and the distance of Rush from our home. There are times I think can't handle another minute but - well, there's no choice. I have to stay strong for my son. It doesn't pay to think too much on things left behind, as the song goes, but it's really hard not to desperately mourn the way things were. Keir is struggling with this as well. I do need to believe Keir will be cured, and have flashes where I do. The doctors comments are hopeful. My heart just contracts in fear when I think about waiting for the results of his bmb, though. The doctors don't seem to like to speculate too much; they say there are plenty of options if it doesn't end up as hoped, but not to jump there until we have to. Is that typical? Dr. Venugopal, Keir's main doctor, has won an award for compassion and all the nurses speak so highly of him. I feel he is extremely competent but that I'm looking for something from him I'm not getting in terms of reassurance. Perhaps that is simply not his job?

Keir is doing well, I should add. Struggling a bit to eat but otherwise okay and getting good exercise. We have an airstepper in his room that he's using as well as going for walks as often as possible. Again - thank you all and prayers for health to you all.

Lori--the uncertainty is indeed the worst of all this. It can be excruciating. But: it does get more manageable. I was diagnosed in early March, and for the first month or so, all I wanted was some sort of assurance. Of a future. Of survival. Of making it without too much pain or damage to the rest of me. And, like all of us, I could not get it since the doctors simply do not know. The phrase "everyone is different" nearly drove me mad, for awhile, since it's what they say when you ask how long? what will happen? will I get (fill in the blank) ? Maybe. Maybe not.
But the fact is: everyone really IS different, and while they can produce statistics, they don't help. What your body does with both the disease and the treatment is so individual and so bound up in your mental as well as physical state, that they really do only know in a general sort of way what will happen when.
And gradually, I have begun to accept this, to get a better sense of how my own body will manage certain things, and to resign myself to the uncertainty. It is still not easy, not at all. And there are days when I would give a great deal to know absolutely anything for sure. But having mostly realized this just isn't going to happen, I am learning to live with it.

Best of luck in what is alas a long process.

Shoshone

Lori,

Thank you for the update on Keir. Another story just in case you encounter this. I wish someone would have warned me. My first BMB after Induction came back inconclusive in the sense that blasts were seen above the 5% level but the doctors believed they were clearing out of my system. They waited a week and retested and confirmed remission.

Have you learned the sub-type of Keir's AML?

Prayers for remission for Keir!

Julie

Lori,

Also, as to your cure question, during my treatment plan consultation after confirmation of remission and cytogenic results, I received a 70% cure rate. I asked their definition of cure-alive in five years and they said no, the AML is gone and does not come back. I will take a 70% cure rate ALL DAY LONG-Praise GOD!

Julie

I have not yet learned Keir's subtype. Tonight Keir is finding himself with some water retention in his feet and knees but they did give him a lot of fluids and hopefully that will resolve easily.

What kinds of questions should we be asking the doctors? What are the best ways to stay positive? I am feeling a little depleted, and tend to kind of cast around for good news to "hang on to" for the day. Kind of a way to get through whatever comes, a foot hold.

Lori,

Just remember and keep saying to yourself "this is curable, this is treatable, this can be fixed." All true. I'm not one to be unrealistically optimistic so coming from me it should get your attention.

You're going to see the doctors every day for a while, probably another couple of weeks so don't think you need to ask everything all at once. Things will come up naturally as you speak to them. For now you know to ask about subtype and cytogenics and genetic mutations like FLT3 and NPM1. That's enough for now. And even that falls into the "it is what it is" category. It really only tells the doctors what is the best post induction treatment. With this disease you get what you get and deal with it accordingly. But the good part is everything can be treated. Stay calm, he will have his ups and downs, good days and bad. Expect a rough day every so often. He'll get through it. Good luck.

We were just told Keir has normal chromosomes which puts him in the intermediate risk group. That was a bit disappointing but not devastating. No other news yet. They said he is responding as they would have hoped to see but only the bone marrow biopsy will reveal the real situation. Is this normal? Is the fact that he's responding as they would have hoped a good sign at all? It's so hard, waiting, and knowing what to tell him. When he asked if he could survive this, they were vague (to my ears) but said that he was young and that yes, he had a good shot at getting better.

Hi Lori! I think if I heard normal Chromosomes, then that is super good news! Others will chime in as well, but that sounds fantastic! From all that you have reported, it does sound like Keir is responding pretty well, and has the usual amount of issues when going through chemo. If the medical staff has some bad news to tell you, they will come right out and tell you. You do not have to worry about them trying to hide anything. No news is good news. Waiting for he next biopsy is hard and we have all been there, but expect the best and NOT the worst. Set your mind to positive thinking. Deal with issues as they arise and don't spend precious time fretting over something that may never happen. I know that you already know that, and I know it is hard. But as you start to see Keir recover from each thing that comes up, you will be begin to see that he will win over this disease. He is young. He is strong. He will survive this. Believe it!
Praying for peace for both of you,
--Tina