Living with MDS in your 40's

[MichelleD]

My AA has morphed in MDS and PNH, but is currently in remission, anyone else out there that is dealing with this and dealing with younger children? Next step is a BMT when the counts go down. How do you prepare your children and not scare them at the same time? They are 10 & 11 and I have not been sick in their eyes for the past 3 yrs. The MDS & PNH dx are new and we are in the "sit and wait" position until something happens. I will have an unrelated donor and know that my chances are at best 50/50 even with the 10/10 donor.

[Hopeful]

Hi Michelle,

Back in the "dark days" when my disease was rapidly progressing, I consulted with a psychologist on this very issue. A lot of what she recommended is also reflected in more detail in this *excellent* book: "How to Help Children Through a Parent's Serious Illness" by Kathleen McCue.

I wish you well.

[5Q-spray]

Hi Michelle, I know what you are going thru. I have a 12 year old son and I was diagnosed in July 09. We choose to tell him everything so far. I don't know if that is the right decision or not. We are not looking at it as dying soon or anything. My doctor is very optimistic with prognosis. I am in the "wait and watch" category, which I HATE! I have been having pain in my left side since late July and they are puzzled by that. I have an enlarged spleen but as of last appointment 2 wks ago, he says 99 percent sure its not the spleen. (I think it is) I go next wk to a surgeon for a new set of eyes on the side issue. How are your numbers? Mine are staying stable at this time. Please feel free to email me privately if you wish........fspray@fpunet.com.
Best Wishes to you and everyone with MDS.

[Ruth Cuadra]

Hi, Michelle.

I can certainly sympathize with the problem of what to tell young children when you're dealing with a serious illnesses like MDS and PNH. My children were 11 and 14 when I was diagnosed and since it wasn't possible to hide or downplay my condition (hospitalization, drugs, fatigue, etc.), we told them what was going on from the start. I suspect your kids know something is going on even if they don't have words for it. I think it is better to tell them the basics and take your cues from them about how much they need or want to know. They will feed off your attitudes, so if you are comfortable and confident about your prognosis, they will be too.

Hope this helps.

Ruth