There are different kinds of MM and some have better survival chances than others.
This is long. It tells my story of the father of my two young children (under 10) diagnosed 15 months ago with MM. It's also a cry to please seek help, and to prepare everything you can. I hope my story will help other families do not have to go through this.
For MM deletion 17, treatment for this aggressive cancer is really difficult. They have made progress... but. He was lucky he had good insurance. I don't know what his doctor told him. He was convinced he could live another five or six years. I asked two friend doctors to honestly tell me what his chances were, and they told me 18 months. This disease and his belief in survival ruined my family.
My immediate requests when I learned this was to go to grievance family therapy and to do estate planning. They were met with, "How dare you? I'm not dead yet.” None of the chemos worked over the next months. He got thin, lost his hair and was unable to take care of the kids for very long periods. He was on blood thinners and had more chemo. He was not a candidate for the anticipated stem cell transplant, so exactly a year later, he went through an experimental treatment, with according to him, excellent chances. I was terrified. I begged him yet again to please help the children and as responsible parents to have a plan for the kids' sake in place. again He was convinced it would either help or not. If not, then he would still have time. Before treatment, he was almost his old self again. No chemo, not sick, his hair grew back. He believed therapy or estate planning meant giving up on his disease. He wanted to fight. It made him mad if I tried to talk about therapy or estate planning.
One year later, he tarted the new treatment, and within a week, his kidneys shut totally down, never functioned again. They released him. No one can tell me what went wrong and how bad it was by then. I no clue what I had to tell our kids. He was still on dialysis, but was going to "get better.” Three weeks later, we learned he was already on his deathbed, and he died a week later, 15 months after diagnosis. his children never got a chance to see their dad in those last months.
We are hurting on every level. I had to tell my kids, that even though he was supposed to get better, he now was really really sick and would not get better. By then, I had put them myself in therapy and that's not it, yet. Due to bad estate planning, the children also pay for it. This is a nightmare with no end in sight. I do not understand how or what the doctors told him that he believed he still had years left? I believe grief therapy is very important.
I know it is hard to be the one with cancer, but it is very hard for the people next to you, too. They are the ones left behind eventually. I can't change what has happened; I accept it for what it is. I cry for my kids, however. Their dad is suddenly gone and because of bad estate planning, there is nothing in place for them. Maybe years from now, they might not even allowed to go in "their” home, get "their” clothes, not even their birthday presents they got from their dad before he started treatment. It's not theirs anymore. Great. How do I explain that to them? In the meantime, their siblings, who never lived there, and are adults do stay there and use their bedrooms.
Please, if you are diagnosed, please go to grief therapy. It will help you and your family to become closer and cope with the feelings you have. It's offered within treatment. Family is the most important thing. Please have a will in place, update everything and make sure there are at least some liquid assets available, a POD account or a joint account. Those do not need to go through a lawyer or probate. Make sure what is in the will is executable. In our case, it says "equally divided," plus he must "strictly follow the document" (the lawyer prepared this document). Well, equal division became very complicated, and it will take years to resolve this.
Make specific bequests or ask your love ones to identify ahead what they would want, so that everyone knows to not get into this situation. If you have life insurance please update the beneficiaries (his ex-wife of 14 years ago was still on it, and his two youngest children were not added). I hope I can prevent another disaster like this. Please take care of yourself and family, so if you may pass that they can actually grieve instead of worrying how to get through the next month. Don't let the attorney or bank prolong or eat up unnecessary fees.
I'm 100 percent sure their father did not want or anticipate this, but in the end, it's the sad reality for us.
Having cancer is bad enough. Please go to therapy and do your estate planning ahead. In fact, I would advise any family to do this, so your family left behind won't have to worry about that. Coping with the loss of a family member is already really hard.