Z in Paraty, Brasil, one year ago. The name of that boat is "Minha Deusa" - My Goddess. Now there's a god that's easy to understand.We both are struck about the odd nature of this disease. Mainly, the symptoms are slight, no broken bones or anything, but the treatment is heavy-duty. So as Rosina has been home for three weeks, the weather is nice, people have come to visit, the feeling that there's still something to deal with is easy to set aside. And you try to. But today, we went to see Dr. Forman at the City of Hope and the reality of being right in the middle (or first quarter) of this thing was brought back. The treatment plan that he outlined is long and involved and has variables.
As I've mentioned a few times before, Leukemia does not go away with one round of chemotherapy. Even though you are "in remission" within a matter of months it will most likely return. So the "consolidation" therapy (more chemo) is kind of a given in normal treatment. The best case scenario would be that after the first round, you would have a Bone Marrow Donor lined up, and you could go straight into that process. That's not the case for Rosina, as no donor has been located. So the next step is to do consolidation which is a lighter chemo treatment. Rosina will probably return to Cedars-Sinai sometime next week for about a week.
And then after that, she will most likely do it again. Here's the reason. There are two kinds of bone marrow transplants, one is from another person (allogeneic) and one is from yourself, using your own stem cells in your blood (autologus). If you get bone marrow (which is stem cells) from another person, it is harder for your body to accept, but once it does, it has a higher success rate as you know there is no leukemia in the new blood that is being produced and in fact, it can fight the old stuff. To do an autologus transplant, if for example no donor can be found, they draw stem cells from you when you are in remission - in this case, after your third round of chemo. You get the stem cells as your white blood count rises, this is when there are more of them present. These cells will be used for your bone marrow transplant. Still with me? Then, before you do the actual transplant, you receive radiation and chemotherapy. It is the strongest treatment in the whole process, and this flat out kills your bone marrow. It will not come back. This is when you introduce the stem cells you already got from yourself. It saves you. After I stared at the doctor for a moment he said "We do this all the time." I sure as hell hope so. Actually, we feel very confident and comfortable with all our doctors and they are all encouraging. So I said to Rosina "It'll be okay, you just have to walk through the fire." And she replied "Over and over." But we've both found that being positive about all aspects of this, from all sides, is the most helpful simple thing we can do.
So...more simply. She'll be going to Cedars for about a week starting sometime next week.
We go back to City of Hope second week of September.
Probably do another consolidation round and "harvest" stem cells.
Then when it's time to do the transplant, it will be a month to six weeks at City of Hope. (!) As our friend Prudence has said many times about thing that seem to have no ending "It's a process".
My parents were out for the weekend and we had a really nice time with good weather and no plans. Nina is back next week, and school looms. Thanks, all, for your support, I hear from people all the time that they just heard about Rosina and the blog and they were able to catch up. Feel free to point people here as it's helpful for all of us. Our friend Allee who wrote " it's more than I've ever known about anything anyone else has had. I would have thought that would have been scary but it's quite the opposite. Very comforting to have information so I can really understand what's going on." I've heard lots of comments like this. We will stay online. Thanks.
xo
ph
4 comments:
Yes, the two of you will be walking through the fire for quite awhile but you are emotionally and physically strong and relatively young. And what a wonderful family you have!! I could pick out Nanny's white head at the Christmas D.R. table!!! Please, oh please let there be a bone marrow donor lurking somewhere.I need Jake for heavy-duty comp.l lessons!! Hugs and kisses, Cince & Jack
You have no idea how comforting it is to hear how well-informed you are on this entire subject! It feels like we can see the end of the tunnel and it gives us something specific to pray for. Peter and Rosina, you two embody kind of warrior spirit that I only aspire to and I cannot tell you how much I admire the love, perseverance and steadfastness that I feel in your presence! Thanks, as always for keeping us all in the loop and answering all the dumb questions before they need to be asked!
Holding you in the light,
Stephanie B.
Hey Peter,
Have you ever considered teaching kindergarten? You would be great at it.
In the meantime, keep it all coming and we'll keep the love comin' right back.
Rain and rainbows. But amazing, gorgeous rainbows that will eclipse the rain!
Mighty hugs from Liz and the guys
Dear Rosina, Peter and family:
Have been following your progress through the process all summer -- congrats on the blast-free state and good luck on the marrow search, although it sounds as if there is a reasonable and workable alternative with your own marrow. We continue to send the MOST POSITIVE thoughts and energy to you.
Love, Ramona
Post a Comment