Thursday, November 4, 2010

transient leukemia

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.

9 comments:

  1. So should I have had Lily tested at birth, or do you think they already did that without me knowing because of her having ds?

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  2. they probably just tested her in the nicu. we didn't ask them to test addison, they just did it....you could always call the nicu and ask them to check her file. hopefully that info would be there. they made a pretty big deal out of it to us, so i'm assuming that is something that they would have done and told you if there was a problem.

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  3. Awwww Deanna....thanks for the kinds words towards Ella and me. The ironic thing is that I have felt very uninspiring the last few days as Ella has had it a little rougher this round. But compared to typical kids, I know she has literally been cruising through, even with this bump in the road. As for beautiful Addison, you remind me so much of me when Ella was her age. I was pretty much planning on Ella getting leukemia and constantly trying to figure out how we will cover the kids at home WHEN she gets diagnosed. I know they say that having transient leukemia at birth only ups your chances to about 30% but our Dr. pretty much made it seem like Ella would more than likely transition. So, although I don't want to lead you think that Addison will for sure, it is so much better to be mentally prepared for it. One thing I have noticed, I haven't really heard of anyone transitioning before they were 1 and in fact the youngest I have heard of (Emily from Living Life with E's) was 16 months. So I strongly feel you can relax for a few months. As for when to have another child, I will say that your life will be MUCH easier if you don't have another one at home. However, if you have strong family support very nearby, you will easily be able to make it work. Obviously, you can't put off having a child forever while you sit and wait for the what-ifs. But waiting until she is 2 before getting pregnant might ease your craziness IF she does transition. I think I have told you this before, but for me the biggest help was following another blog friends journey through chemo so that I felt completely prepared for what was to come. The day we found out she had leukemia was not much of a shocker at all and I knew exactly what to expect....that is half the battle my friend. But hopefully Addison will fall on the other side of the statistics :)

    And for Patti, just like Deanna said, they more than likely tested her at birth and there were no problems so it was never brought up. We were just told about it because it was there.

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  4. I have never heard it called TAM before. Macy had transient leukemia at birth as well. But they refew to it as TMD transient myeloproliferative disorder. I believe I was told the chances of getting full blown leukemia is aruond 30%. Macy is only being checked every 6 months or so. It worried me a lot in the beginning. But I have decided that a life of worry is not a life worth living :) keep your head up. Our girls are near the same age, so maybe we can help each other though it!

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  5. I think they just tested Laura too. I was talking to Ella's mom, Denise, about it. I gave her Laura's blood counts and all that, she talked to the doctor where Ella was staying at the time, and she said that they were normal. So I think that if something was wrong, then they would have told you after Lily was born.
    I'm sorry that you have so much to deal with, Deanna. But God will carry you through anything and everything. I will be praying that Addison is one of the percent that does not develop Leukemia! God is bigger than any diagnosis.

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  6. Haha oops, I just read Denise's comment. I guess I just repeated what she already said ;)

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  7. ok, thanks, i will ask her dr about that.

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  8. Let us know what they say, Patti :)

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  9. I too hate reading all the blog with kiddos going through chemo. It hurts my heart and I hope that Addison doesn't have to go through it too.

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