My son (then 6 months old) was diagnosed with ALL on 10/28/06. He responded well to initial treatments. The first 6 months were very hard on him but he did well-he remained in remission. Just last week they found leukemia blasts in his bone marrow.
He was given a less than 50% chance of survival in October. His odds of survival have dropped now that he is in relapse. The doctors are still not sure if he is going to have to get a bone marrow transplant or not. They are awaiting the test results from 6/14/07. He goes back in next Wed. If his current regimen of chemo has not been effective in reducing the blasts there is a high probability of a bone marrow transplant, which is essentially a one shot deal. He remains at high risk for failure.
As a father, I am screaming “IT’S NOT FAIR!!!” in my head. I want to feel angry, I want someone to blame so I can take it out on them but there is no one to blame. As a father I am suppose to protect my children and eliminate any threats. I am absolutely powerless to do anything. Powerlessness is uncomfortable and scary. I hate sitting and waiting. I hate not knowing. I hate not being able to do any-fucking-thing about it! I want to break things, and punch things, and destroy things!! But I know how futile that is. All I have left is faith. Faith that things will work out. A quote that I keep returning to: “Faith is knowing that as you step into the darkness of the unknown, you will either land on solid ground or be taught to fly”.
My wife is a wreck. She is carrying the primary burden of taking care of him. She has spent the most time with him and is the first line of information. She gets to hear everything first. Her attention is divided between caring for my son and caring for our other children. (I work 2 jobs and away from home most of the time). She is very afraid. She wants things to work out but her fear has weakened her hope. I want to help her. I want to convince her that everything will be okay. I want to take her worries away. But I can’t do that either.
I’m so stuck I can’t even scream. FUCK LEUKEMIA!!! I’m not ready to give up my son! Becoming a parent is a strange experience. It is the one and only time in a person’s life where you meet someone for the 1st time and would give your life or take someone else’s to protect him/her. HE’S MY SON AND YOU CAN’T HAVE HIM YOU BASTARD!!!
Man, I know this isn’t a Pit-worthy response, but I’m so sorry.
I lost my father to AML a decade ago, and as terrible as that was, I freely admit your situation - an infant child - is ten times worse. I would be going to pieces if it were my child. If there’s anything I can do to you, or you just need someone to vent to off-line, please feel free to e-mail or message me (info in profile).
I’m so sorry to hear that, Redfrost. If anybody reading would like to be tested and join the bone marrow registry, the website in the US is www.marrow.org.
I’m so sorry. I can’t even imagine how terrible this is for all of you. I am feeling a infintesimal bit of the powerlessness you feel as words don’t do anything.
Uh-oh. I’m looking at the two links and even though I gave samples for the registry years ago, I don’t know which is which. I guess I’ll write to both and see.
Thank you all for the support. It feels good to be heard. I’m at work and my head just isn’t in the game. I got notes I have to write and I just don’t feel like doing it. I feel like there is something I should or could be doing but I know there is nothing to do. Mostly I just shake my head and sigh.
I thought there was only one? I gave at a drive, I’ll have to check my card to see if there’s another registry I could join. I’ve never been called to donate (few are) but I would in a hot minute.
I’m so sorry to hear what you’re going through. My best to you and your family.
The University of MN concluded in a recent study that umbilical cord blood is as effective as bone marrow in treating childhood leukemia, with the added benefit that it doesn’t require invasive procedures or an exact match.
Redfrost, I’m very sorry about your son.
If it makes you feel any better, my husbad had ALL and crappy odds and was very touch and go for a while. He’s been healthy for 20yrs now.
Cancer sucks. I will keep your family in my thoughts and hope for good results next Wednesday.
Hang in there.
Its hard to find the right thing to say. I worked in pediatric leukemia research for three years, so I am familiar with the frustration and fear parents feel. If its any help, there are many intelligent people dedicated to finding a cure for this illness.
Checking the requirements, apparently I am too heavy.
It must be so tough to have to be at work when you want to be near your boy and family. And it must feel like work is so trivial in the face of all this. I’m sorry.
Redfrost, you have my deepest, deepest sympathies. I can’t even being to imagine what you’re going through. Keep taking care of your family, and take care of yourself as best you can.
I’m going to move this thread to MPSIMS. It couldn’t be less mundane or pointless, but I think that’s where it will get the most support and understanding.
