When Addison was born, she was diagnosed with multiple health issues, one of them being transient leukemia. At the time, she had so many bigger problems that it seemed like such a non issue. It almost seemed as though we would never make it to the point where we would actually have to worry about this. The breathing and heart issues were a much more immediate concern.
Now for the first time really (it took us nine months), she is a healthy little girl (except for an annoying cold that we both seemed to have picked up). It is hard to think that this will in all likelihood be the next big thing that we are dealing with.
Basically, transient leukemia (also known as TAM- transient abnormal myelopoiesis) is when there are blood blasts that are leukemia like and either resolve themselves within a few days or weeks or turn into full blown leukemia (please excuse my incredibly simplified explanation, but this is how I best understand it)
Addison's blood blasts finally resolved themselves after a few weeks (after an extremely scary instance of her unable to stop bleeding), but we were told that the chance of her developing real leukemia before she was three was extremely high.
When I look forward to the next three years of our lives, I always in the back of my head think...OK, will we be dealing with leukemia then? We talk about having another baby. I think, would it be better to be pregnant while dealing with this or have another child already at home?
It's hard every month when we have her blood rechecked to make sure that the leukemia isn't there. It's hard each time I see an imagined bruise on her and fabricate it to be much more than it actually is. It's hard when I read so many blogs of other moms and beautiful babies going through chemo right now. It's hard to know that in the game of statistics and numbers, this will probably be our life.
Did you realize that the likelihood of a child with DS surviving leukemia is much higher than that of a "normal" baby? That is what the geneticists told us right after Addison was born and she warned us that this was probably going to be in our future.
Apparently something about the extra chromosome allows the body to fight the disease more thoroughly. The geneticist told us that there are many studies being done on babies with DS and leukemia as to why and to further finding a cure for leukemia for everyone.
I find it amazing that God designed it this way. Something about my daughter's body is genetically designed to fight a disease that we are told that there is a high chance of her contracting.
Does that make it easier looking into the future and not knowing what it holds? Not really. But it does tell me that when the time comes, He has already designed our path through it.
I look to those families who this is their life right now. I am continuously amazed by their strength and the amazing spirit of their children. I am praying especially these days for sweet Ella Grace: (her blog) I have fallen so in love with her from reading about her these past months. I greatly admire her mom, Denise, who has been such a great inspiration to so many.
As far as my little girl's future.... Do I love her less because she holds so many issues? Ha no. If anything, I love her so much more. She truly is a miracle baby and I know that her life isn't in my hands.
I pray that she will be one of the "other percent" that is born with TAM but doesn't develop leukemia. It's hard to see your baby go through so much. Addison has already been through more than any nine month old should have to.
There's no good way to end this train of thought because it is ongoing. Every day, every test...
There is one thing that I do know, I love Addison Chubbs McPhee more than I ever thought possible. If only love was enough.....
For the month of Thanksgiving- I am thankful that this month's test came back negative for leukemia. We'll take it one month at a time.