You are not bothering us, Karen. Not at all. Although I cannot relate to the hideous pain you are going through, I can promise you that whatever you are feeling is completely OK. Only you know what it's like to be a Mom to Leann and to have watched her suffer these last 18 months. There is no silver lining - and no words can make it better. Please come here often and vent to us as we are all grieving the loss of your Leann as well. I'm sure in your head you know at some point the hurt will not feel exactly the same as it does right now (probably like 1000 red-hot daggers in your body), but your heart cannot know this. As for your purpose, you must be overwhelmed with the nothingness - no meds to give, no temps to take, etc. We kind of get it - we haven't lost our child to the beast yet - but unlike some of your other friends, our minds have gone there. They've had to. So we get it. We are praying for you to have strength and for the health of your babies. Please let me know if there is anything I can do. Is there anything I could send to Cailyn to help her focus on something else besides the loss of Leann? Something to comfort her? Tickets to a show? Anything?
I've cried so much Karen for your loss, for my fear -- for all of us here ...but its good that you're reaching out, and not hiding away. Even with the best of intentions, other "friends" and anyone who is not immediate family, will never understand what our children endure, and what our souls feel. Keep expressing yourself, you have a right to all of your feelings ....and never apologize...at least it sounds like you have some faith - that's not my strong suit, but maybe you can find some comfort there eventually. Hang in there, take each breathe, each second, one at a time ...xoxox Becky
I want to reach out and give you a big hug, I don't have the right words to even describe the horror I feel for you. I think of the first time you wrote in to LLS and introduced yourself, how we corresponded because we had so much in common, kids the same age...both athletic, struggle with MTX, the ups and downs and most of all HOPE. I'm so sorry things went so wrong for your little girl, she fought so hard. I'm devastated for you. Don't ever feel that you are bothering us, we are here for you when ever you need us.
Leann will live on in our thoughts......I know her sufferings were the worst that cud happen.......... Lets all get together as electronically connected people to help all those small kids who come on these boards.....And Karen you should resolve to be always available....for all who follow us.......
Karen, I just love you so much and wish so much that there was something any of us could do to comfort you. Please come here as often as you want. Fee free to email me, firstname.lastname@example.org, anytime you want. I have no words, but I'm a good listener. I think about you and Leann and all your family, especially the baby, often. My mother in law cried when she read about Leann's death on our Team Joey site; your family has touched the hearts of thousands.
PS: to me, you are the LLS board in many ways. This will always be a place where you belong.
Especially in the last week, I have wished for a greater connection to you. The virtual world is absolutely inadequate in my wishes to sit next to you, shed tears with you, listen to you, hear you talk about Leann until your voice leaves you, and maybe even scream and smash things to our liking. I have learned hate through this disease. Last week, I learned a new depth of hate as my heart broke for you, with you.
I find myself numb and in disbelief with all Leann endured. And I am angry that you are left thinking, in any way, that you could have done one more thing for LeAnn. Time and time again, Karen, when you would post, I would think: what can I say to Karen, do I have advice to share? Truly, Karen I had nothing to add. You did so much, and then some, with each and every turn in the road. I pray you find compassion for yourself, knowing you could not have done more. LeAnn could not have done more. You could not have done more. Leukemia is cruel. LeAnn's battle was remarkable, day in and day out.
No parent should bury a child. How life comes together for you, Karen, from here, is one breath at a time. Literally. I am praying for you. Listening. Wishing somehow to send you real support. We are listening. We are here. And we miss LeAnn.
In tears, Renee
Karen, please always know that you can come here. There are a lot of people who care for you deeply. I still can't believe the hell that you and Leann went through.
I read a lot of books on Grief and childhood death a few months ago when I thought that Peter was going to die. And I think the main thing that I got from those books, is that there is no wrong way to grieve. And it's something that you never get over. But eventually you do get to a stage where you can remember the happy things about your child and not just the bad, suffering things.
Please just know that you can always come here and we will all be there for you. I so wish there was something I could do.
I am so, so sorry. I can't even imagine what you are going through. Never apologize. I just want you to know that since I became a member here (fall/winter 2010), I always held Leann in my prayers. I remember hearing about all the hurdles that she had to overcome. I remember checking on here day after day to see how she was doing last January. She was such a fighter. She touched so many people's lives. People who never even met her. I am in tears. It is so unfair. She fought so hard. She didn't deserve this. She fought so hard and had to overcome so much. It just isn't fair. I hate that this horrible disease stole her from you. I am so so sorry. Words can't begin to tell you how sorry I am. Never apologize for venting. I wish there was more we could do. I know there is nothing, so if all I can do is "listen", I will always listen. My heart breaks for you.
The list of unfair-ness is 100 miles and 18 months long. Longer, since you'll be missing her for so much longer, and her sisters and father will miss her, achingly, piercingly.
If it helps you to post three times a day about what makes you cry and scream, then please do that. For the past months, we wonder, what can we possibly do to make things an iota better, and if what we can do it to read/listen, and then write back, then we will do that.
When we hadn't heard from you for awhile, I was so hoping that you had found people who could say the right things about the specifics of what was going on for Leann, that we had expired as a helpful resource for you. Our other posts, while they are about beloved children, are a step apart from what Leann went through. I had worried that our posts would seem trivial to you, and that that would be painful for you to read.
When this thread came back up after a year, I hope we could somehow send a little more support, and now it is beyond sad that it is a memorial.
I check this site every day, and a lot of the reason is to check up on you, Karen.
It is just not supposed to be this way. And I am sure only those parents who have lost a child will truly understand. I have had a tough year - just watched my stepdad die to cancer just prior to Christmas. But it is so different - I know that he faced his death in peace as he feels he had a good life. My stepdad lost his first son to cancer and I never understood just how hard it was on him until Josef was diagnosed - but then I only knew the fear of it not the reality.
It is just not supposed to be this way. I am so sorry. I checked on here and on acor lots of times just hoping Leann was doing better and I fully expected for things to improve. I hope your new babies bring you some joy and help to rebuild a bit. But I can only imagine that things will never be how they should be --- we are not supposed to outlive our children. I am so sorry.
everyone here is speaking from the heart. Our hearts ache for you, and you need somewhere to pour out your anguish. If these boards allow you to do so, do it as often as you wish. People who tell you to remember Leann's good days, although well-intentioned, clearly have no clue about all that you and she went through, together. I have not walked in your shoes, but I'm sure it is going to take time. So much time, it may even seem impossible that it may ever happen.
We're here for you.
my heart is so broken for you. you are right, this is the place to bring your heartache. as you said, none of us has been exactly where you are. but I think most of us have at least seen the mortality in our own children. our "regular" friends don't have that experience to call on and it does make it hard to talk w them sometimes. If there were only some words that could possibly provide comfort- we would utter them again and again.
Karen - I have no words that can truly express how sorry I am for Leann's suffering and your family's loss. This is not okay, it's not fair, it's not right. Not for any of you. And I agree with what everyone else has said - although we can't completely get it, we're probably closer to getting it than people outside this f'd up world of pediatric cancer. So... please vent, and call on this virtual family for whatever we can do for you. A friend of mine lost her 12-year-old son to this beast in September. If she were here on this page, I think she would tell you to take the grief process at the pace it comes, not trying to force any feelings a certain way as you go. I think she would also tell you to realize that the people around you will grieve differently than you, and that they will never understand that your loss is different -- greater in many ways -- because of the special bond you had with Leann as her partner on this awful journey. I know she would also say that you have the right to punch anyone in the nose who tells you "time will heal your pain." She would say that how you're feeling and what you're experiencing right now is what matters, not what you might be feeling God knows when. I know she would give you a great big hug, just like all of us wish we could as well. My thoughts and prayers are with you and your family, and I hope the people in the real world around you give you the space, support, and comfort you need in every moment.
You are right--most of us here have not had your tragic experience of such a long, hard battle and then such overwhelming loss and sorrow. What we have experienced for almost two years, though, is your constant support for all that we and our children have been going through. You have been so generous with your empathy and your wisdom, even as you were fighting Leann's more difficult complications. We love you and we love Leann because we've developed such a strong sense of who you are through your interaction with us here. I'm grieving for the things cancer took from Leann, from you, and from everyone in your family. I hope you will use this discussion site if you find that it helps you in any way.