10 year old son diagnosed in October

[evansmom]

Our family has recently been thrust into the scary world of Aplastic Anemia. Our ten year old son, Evan, was diagnosed after two bone marrow biopsies on October 30, 2007. Evan had been having an unusually large amount of bruising on his legs and intermittent petechiae. We took him to our local ER for blood work on October 13, 2007. Our world crashed and our lives were forever changed on that day.
Our nine year old daughter Emily has been ruled out as a match. Evan very swiftly came under the care of a wonderful team at McMaster Children’s Hospital in Hamilton, Ontario.
Evan was admitted for a week, during which time he had a port inserted, received his first blood products and began a five day course of Atgam (horse), which he tolerated reasonably well. He was also started on cyclosporine, G-CSF and a month of prednisone. Aside from two brief hospitalizations for neutropenic fever requiring antibiotic therapy, Evan has been followed twice weekly as an out patient.

We have immersed ourselves in extensive research, reading and learning as much as we can about this terrible disease and the treatment options.

Anyway I'm so glad to have found this forum, there seems to be so many knowledgeable people here and while I have every faith in Evan's medical team, there's nothing like talking with people who are going through the same experiences.

I am currently communicating with Dr. David Margolis in Wisconsin as well as an extra measure of reassurance.

One question about the G-CSF: They had Evan's ANC go all the way up to 21.7 before they decreased his dose from daily to every other day. I expressed that I would prefer Evan to be on as little of this med as possible so the doc said she would be decreasing him to every three days soon. His ANC is now around 6.4 but I'm wondering if that's still more than necessary. Would you guys recommend he get the med maybe twice weekly or something that would have his ANC no higher than1.5-2 because that is an adequate count, isn't it?

Sorry to be so long winded but I wanted to establish Evan's story. My posts from now on will be much more brief!

[Marlene]

Hi Nicole,

They took John off daily GCSF pretty soon after his white count kicked in. He went to 3x week, then 2x week, then 1x week then nothing. And his ANC never got up to 6.4 with it. When you come off of it, you can expect the WBC and ANC to drop 50 -70% which is pretty alarming. In fact, John's WBC/ANC took about 4 months after stopping it before it stabilized at the lower level. Our doc said that you can fight anything with and ANC of .5 and John did just fine for a few years with an ANC range of .8 - 1.1. You can always add it back in if there's a need. We did that when John got the shingles. To this day, John's ANC remains low...1.8 - 2.1 is his new range for now.

So I would agree with you....continue to reduce it if you can.

Take care,

Marlene

[skoopman]

Nicole,

My daughter was diagnosed with AA on June 1, 2005. We ended up finding Dr. Margolis as well and moving out there in October 2005 so she could have a MUD BMT under his care. He is the best dr, caring, king, considerate, and receptive to the parents concerns and feelings. Anyways, she is now just over 2 years post-BMT and doing very well.

AA does take your life and turn it upside down, especially when it comes to your kids! You are supposed to watch out and care for them and protect them, but then, BAM, you get slammed with something like this that is out of your control. I found, for me at least, it helped to be positive. Do everything in your power to research and make the best possible choices and then feel comfortable with those choices you made.

As for the G-CSF, they had Michelle (my daughter) on that but she never had a response to it, at least no response to speak of. I agree with Marlene in that when they stop it, it will go down greatly so be prepared for that. Have you asked his dr's why they are keeping his ANC up so high?

Michelle has a carepage set up and you can read everything we went through. In addition, if you have any questions or just want to "talk" to someone who has been there, feel free to email me at suzanne_koopman@pacbell.net

Ah, time to stop the fighting of the kids upstairs and make them get dressed for school.

Suzanne

[evansmom]

Thanks Suzanne for the support. This is scary stuff.

My computer has been down for a week but we're good again.

It looks like Evan's G-CSF may be discontinues altogether next week. We go to clinic on Tuesday morning and it will have been 5 days since his last dose so, I think, whatever his ANC is, they should be all his own, or nearly so. That will be interesting and I'm hopeful the number will be acceptable because even with the med at just 2 days a week, his ANC remained in the 30,000's.
His platelets are coming and his red cells have stopped dropping (latest P=28, R=90, A=31.8) so I'm hoping that if we remove this stimulus, more stems can become platelets and reds. Time will tell.

It inspires me that Michelle is doing so well after MUD, though I'm sure the road was difficult at times.

Take care.