Hello

Alisha - posted on 01/02/2010

That is exactly what happened to us, Americans but in the UK and treated at Great Ormond St Hospital in London the first two weeks after was diagnosed and now does outpatient at the Royal Marsden. Joren will be 3 as I mentioned in my other post in a month, he has the exact same dx. he is about to start maintenence now, 3 yrs for boys. Can you tell me anything about her treatment schedule before and now? I'd really like to compare his to the regime in other countries (specifically CA and US). His CNS has always been clear.

Janis - posted on 11/05/2009

Quoting Lorie:

My 8 year old son, Brett was diagnosed with PH+ ALL Jan 16, 2008 in Winston-Salem at Brenner Childrens Hospital.  This past year has been crazy!  I also have a 5 year old daughter, Baylee and had another son, Seth in April 08.  Because of the aggressiveness of this type of Leukemia, Brett went through a Bone Marrow Transplant at Duke in August.  He is doing well.  Still has LOTS of energy.  He's also ADHD and is not on medication for that right now, so I'm really pulling my hair out. LOL.

Lorie:

I have a friend I met through the onco clinic whose son is PH+.  It amazes me how different the treatments are, compared to low risk ALL.  Her son is just over a year (I think).  I'll let her know about this group.

Melanie - posted on 02/02/2009

Hi, our son Pierce (now 20-months-old) was diagnosed about 2 months ago - on Dec. 11th. He's starting on interim maintenance and is doing well. I'm not looking forward to the delayed intensification phase - what a crummy way to spend his 2nd birthday and his sister's 4th! Any advice or thoughts about how to help him get through what his docs tell me is a "sucky time"?

Thanks, 

Melanie

Jen - posted on 01/20/2009

My son Cameron was diagnosed with infant ALL on Jan 25, 2008. I think that we have finally completed our inpatient stays and are almost in maintenance. He is doing wonderful except for a cold that won't go away. He was barely 7 months when he was diagnosed. He just had a bump on his head that I didn't know where he got and it bothered me enough to take him to the doctor. Thank goodness. He ordered a CBC and his white count was 540,000+. He was getting chemo less than 24 hours later.

Lorie - posted on 01/10/2009

My 8 year old son, Brett was diagnosed with PH+ ALL Jan 16, 2008 in Winston-Salem at Brenner Childrens Hospital.  This past year has been crazy!  I also have a 5 year old daughter, Baylee and had another son, Seth in April 08.  Because of the aggressiveness of this type of Leukemia, Brett went through a Bone Marrow Transplant at Duke in August.  He is doing well.  Still has LOTS of energy.  He's also ADHD and is not on medication for that right now, so I'm really pulling my hair out. LOL.

Janis - posted on 01/10/2009

Quoting Sara:

Hi Janis - my son, Eliot, is currently 2 years into 3 years of treatment for ALL. We live in Minneapolis, Minnesota.

How are you doing. Are you holding up? Do you have help?

How are you doing?  You must be in the maintenance phase of treatment then?  I live in Canada, but I think they do the same treatment in the US that they do here. How old is Eliot?

Janis - posted on 01/07/2009

Things are going really well!  If you saw Paige now, you wouldn't even know she was going through treatment!  She's handling this phase really well!  I am worried about next month though.  We start delayed intensification, and through the two months she receives over 10 different chemo's.  And she's back on dex at times too.  What was this phase like for everyone else?

Janis - posted on 12/08/2008

We're doing okay. We are just starting interim maintenance. Paige has been handling things incredibly well. She's an only child so that does make things a lot easier. And we do have lots of support from family and friends. The hardest thing for me is that her life is essentially on hold. No preschool or dance class, cause she may miss too many classes to make it worthwhile. Your son has one more year of treatment right?

Sara - posted on 12/07/2008

Hi Janis - my son, Eliot, is currently 2 years into 3 years of treatment for ALL. We live in Minneapolis, Minnesota.



How are you doing. Are you holding up? Do you have help?

Janis - posted on 11/16/2008

Thanks Jaime. It amazes me how common leukemia in children really is.

Jaime - posted on 11/16/2008

Hi Janis! My daughter was diagnosed with ALL in April 1999. We are and have been in remission for quite some time now. We went through a clinical study for 2 in a half years with chemotherapy. Peyton was diagnosed @ 16 months and will be 11 next month. We went through treament at St. John's Hospital in Springfield, IL. If you have any questions or just want to chat, feel free. My prayers are with you and your family!!