Re: Lookin' for any info

[Guest guest]

I am sorry, I don't have experience with pre-leukemia, but I do hope that you find the resources that you need. Prayers for your daughter.

Mom to Ethan, Ds & ALL

[ ] Lookin' for any info

My daughter is 2 1/2. Back in May, she was diagnosed with pre-leukemia (MDS). They anticipated it would progress into AML very quickly. She was in need of a heart surgery, so they rushed to get that done and replaced her mitral valve. She was originally supposed to start chemo as soon as her heart was strong enough, but they then decided to send her home and let her entire body get a little bit stronger. In September, we had a bone marrow biopsy done and all the blasts were gone. It was then determined it must have been her really sick heart. Fast forward to last week. During routine labs, all 3 cell lines were low. She had another bone marrow biopsy done and the pre-leukemia is back? We are watching and transfusing as needed with the intent to start chemo in a month or so unless this "disappears" again. I'm just trying to find someone who has any experience with this pre-leukemia.

[Guest guest]

First off, I am so sorry to hear that you are going through this. My husband and I unfortunately know MDS all too well. I can't speak for your daughter's prognosis any better than your doctors, of course. But if it is any help I will share my son's story. The account below is modified slightly from the version I give on his Caring Bridge site.  We also have a journal on his site which describes everything he (and we) went through in much more detail. You are welcome to look at it: https://www.caringbridge.org/visit/zacharyleonwallaceWe wish your daughter and family all the best. You will be in our thoughts and prayers.Our son, Zachary, who is now 1 1/2 years old, developed a condition called transient myeloproliferative disorder (TMD) when he was first born. He had an extremely high number of 'blast' (immature white blood) cells in his blood which climbed to an alarming 70% of his white blood cells just four days after he was born. TMD is unique to newborns with Down syndrome: if he hadn't had DS he would have been treated immediately for leukemia. However, as the name implies, this disorder often just goes away. With Zach, the blast cells eventually did go away, but the TMD put him in a fairly high risk group (30%) for developing true leukemia.As a result of the TMD, Zach was closely monitored at Oakland Children's Hospital. After the blast cells disappeared, his cell lines went up and down but really fully recovered. He had a bone marrow biopsy in April that showed he did not have leukemia at that time, but revealed some genetic abnormalities in some of his bone marrow cells that gave his doctors concern. They recommended that he have another biopsy in June.Zach had his second biopsy on June 18, the day after his first birthday. The biopsy revealed that he had a condition called refractory anemia with excess blasts (RAEB) which is both a type of MDS and a precondition to AML. They recommended that he begin chemotherapy in 1-3 weeks. A second opinion from Stanford confirmed the diagnosis.He started treatment July 11, and a biopsy confirmed that the RAEB had developed into full-blown AML. Since starting treatment, he has had several bone marrow tests and all of them have shown that the cancerous cells are no longer in his marrow. Zach finished chemotherapy last month, we are currently awaiting results of the cytogenetics to find out if the genetic mutation that caused the cancer is gone, too. We expect that it will be.The good news in all this is that with babies with Down syndrome have a good recovery rate from AML, 80%.  sonAssociate Professor of English and Graduate Literature CoordinatorSan Francisco State University, Humanities 5371600 Holloway AvenueSan Francisco, CA 94132(415) 338-3107 On Feb 7, 2009, at 7:29 AM, chatt527 wrote:My daughter is 2 1/2. Back in May, she was diagnosed with pre-leukemia (MDS). They anticipated it would progress into AML very quickly. She was in need of a heart surgery, so they rushed to get that done and replaced her mitral valve. She was originally supposed to start chemo as soon as her heart was strong enough, but they then decided to send her home and let her entire body get a little bit stronger. In September, we had a bone marrow biopsy done and all the blasts were gone. It was then determined it must have been her really sick heart. Fast forward to last week. During routine labs, all 3 cell lines were low. She had another bone marrow biopsy done and the pre-leukemia is back? We are watching and transfusing as needed with the intent to start chemo in a month or so unless this "disappears" again. I'm just trying to find someone who has any experience with this pre-leukemia.

[Guest guest]

I have a friend locally who had the same condintion. He did

eventually develop AML and just finished his treatment. I can give

you info if you want it. I believe he was around the same age. They

found his through low blood counts after having had pneumonia then

continued to track it.

Kellie Hill

twinshmbh@...

806-928-6518

>

> I am sorry, I don't have experience with pre-leukemia, but I do

hope that you find the resources that you need. Prayers for your

daughter.

>

>

> Mom to Ethan, Ds & ALL

>

> [ ] Lookin' for any info

>

>

> My daughter is 2 1/2. Back in May, she was diagnosed with pre-

leukemia

> (MDS). They anticipated it would progress into AML very quickly.

She

> was in need of a heart surgery, so they rushed to get that done

and

> replaced her mitral valve. She was originally supposed to start

chemo

> as soon as her heart was strong enough, but they then decided to

send

> her home and let her entire body get a little bit stronger. In

> September, we had a bone marrow biopsy done and all the blasts

were

> gone. It was then determined it must have been her really sick

heart.

> Fast forward to last week. During routine labs, all 3 cell lines

were

> low. She had another bone marrow biopsy done and the pre-leukemia

is

> back? We are watching and transfusing as needed with the intent

to

> start chemo in a month or so unless this " disappears " again. I'm

just

> trying to find someone who has any experience with this pre-

leukemia.

>

[Guest guest]

My daughter had MDS which then went into AML. While in the MDS stage, her platelets were on the low side and we would have blood draws monthly. This lasted about 5 months and when she turned 2 years 2 months, her blast cells went up in number and we started chemo immediately. The Chemo treatments lasted about 6 months and it is hard and heavy stuff. had her heart surgery when she was 9 months old so we didn't have to deal with both at the same time. Although looking back her platelets were low then after her heart surgery. So I wonder if the MDS was lingering around that long. There is another little guy on the list, , who I am sure his mom will tell his story. He had MDS/AML and heart surgery issues all together at a very young age. On a postive note, is now 7 years in

remission.From: chatt527 <chatt527@...>Subject: [ ] Lookin' for any info Date: Saturday, February 7, 2009, 10:29 AM

My daughter is 2 1/2. Back in May, she was diagnosed with pre-leukemia

(MDS). They anticipated it would progress into AML very quickly. She

was in need of a heart surgery, so they rushed to get that done and

replaced her mitral valve. She was originally supposed to start chemo

as soon as her heart was strong enough, but they then decided to send

her home and let her entire body get a little bit stronger. In

September, we had a bone marrow biopsy done and all the blasts were

gone. It was then determined it must have been her really sick heart.

Fast forward to last week. During routine labs, all 3 cell lines were

low. She had another bone marrow biopsy done and the pre-leukemia is

back? We are watching and transfusing as needed with the intent to

start chemo in a month or so unless this "disappears" again. I'm just

trying to find someone who has any experience with this pre-leukemia.

[Guest guest]

HI there! Sorry it has taken me so long to respond to this thread.

My name is and I am Mom to , who mentions in her response. My son had pre-leukemia (MDS) that also turned into AML when he was 6 months old. He had heart surgery to repair an A/V canal almost 2 months before they started chemo at 8 months. They needed his heart to be strong.

I think MDS does linger. was born with myloproliferative syndrome, which they also said "mimicked Leukemia" . Once that cleared up, we thought was fine. Then pre-op blood work showed the blasts were back.

On the other hand, and completely unrelated, just before 's heart surgery, I had a double mastectomy for breast cancer. About 2 weeks after my surgery, they did some post opt testing and said that I had things in my blood that looked as if I might be developing leukemia. I had 2 bone marrow biopsies done. The first one, they did not get an accurate sample. The second one determined nothing. Two weeks later, my blood was fine and they said that it was the way my blood reacted to the surgery? The body and blood do weird things.

What city are you near or in? was treated at Children's Memorial in Chicago. If you are not already working with an expert in this area, I would suggest your doctor refer you.

I know this isn't much help. But, if you need any moral support, I am available. Feel free to email me. I pray everything turns out OK for you.

My daughter had MDS which then went into AML. While in the MDS stage, her platelets were on the low side and we would have blood draws monthly. This lasted about 5 months and when she turned 2 years 2 months, her blast cells went up in number and we started chemo immediately. The Chemo treatments lasted about 6 months and it is hard and heavy stuff. had her heart surgery when she was 9 months old so we didn't have to deal with both at the same time. Although looking back her platelets were low then after her heart surgery. So I wonder if the MDS was lingering around that long. There is another little guy on the list, , who I am sure his mom will tell his story. He had MDS/AML and heart surgery issues all together at a very young age. On a postive note, is now 7 years in remission.

From: chatt527 <chatt527 >Subject: [ ] Lookin' for any info Date: Saturday, February 7, 2009, 10:29 AM

My daughter is 2 1/2. Back in May, she was diagnosed with pre-leukemia (MDS). They anticipated it would progress into AML very quickly. She was in need of a heart surgery, so they rushed to get that done and replaced her mitral valve. She was originally supposed to start chemo as soon as her heart was strong enough, but they then decided to send her home and let her entire body get a little bit stronger. In September, we had a bone marrow biopsy done and all the blasts were gone. It was then determined it must have been her really sick heart. Fast forward to last week. During routine labs, all 3 cell lines were low. She had another bone marrow biopsy done and the pre-leukemia is back? We are watching and transfusing as needed with the intent to start chemo in a month or so unless this "disappears" again. I'm just trying to find someone who has any experience with this pre-leukemia.

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