Your Story

Crystal - posted on 05/16/2013

Hi. My name is Crystal and my son Jack was diagnosed with Pre-B ALL in January 2012 (he was 5). He's in the maintenance phase now until approx. March 2015. He's doing quite well and has tolerated all the treatments and we've been lucky that he hasn't been hospitalized since his diagnosis.

Amanda - posted on 05/09/2013

Amanda. Our son was just diagnosed with Pre-B infantile ALL at 5 1/2 months old. We are currently admitted for the 36 day induction chemo. We're hanging in there but wow, what a crazy journey we've begun. Would love to connect with other mom's out there who have been through the 1st year of chemo and are on the other side.

Stephanie - posted on 03/09/2013

Taylor, my son was 4 months old. We have a Facebook group for infant leukemia. Search "infant leukemia support group" and ask to be added. Lots of moms and knowledge there!

Taylor - posted on 03/09/2013

My daughter Hailey who is 6 months old was diagnosed with ALL and looking to see if she has MLL as well we found out a little over a week ago. she just started her intensive chemo yesterday and so far shes doing really good. cranky from the steroids but good. shes my only one. and just looking for moms who have children as young as mine that has leukemia.

Amanda - posted on 01/25/2013

so wonderful to hear that he is doing well. Having a large support system is so important. Your son will be in my prayers.

Amanda - posted on 01/25/2013

My name is Amanda, in 2009 my son Braxton was diagnosed with pre b cell ALL. He was 2 at the time and now he is one week post chemo, 5 1/2 and doing wonderful. There have been bumps in the road but we have made it. I can now sigh a big sigh of relief, in the back of my mind I am sure that I will have many fears for the coming years.

Katie - posted on 11/19/2012

Hi, my name is Katie, massage therapist and soon to be going back to school for nursing. My 4 1/2 yr old was diagnosed with precursor B cell ALL in october. We spent a month trying to figure out why his stomach was getting so large, and why our normally very energetic boy was so lethargic. many doctor visits and two ER trips later we ended up in the PICU and finally pediatric oncology. I am happy to report that at the end of the first month of treatment my son was classified as Low Risk. He is in a study, and was randomized to M therapy, where he will receive a lot, lot less chemo. With hopefully the same success rate as standard risk. So far we are happy with his outcome, but I don't dare to become complacent.

Joy - posted on 06/26/2012

When my daughter was 1 she was diagnosed with High Risk ALL.
She is now 7 and cancer free! I will never forget High Dose Methotrexate, and Vincristine
The whole journey has certainly changed our lives.
I would love to chat with moms who have similar as my little girl. At about the same age of diagnosis. What kind of after affects has your daughter had, if any?

Tracy - posted on 06/26/2012

My 5 year-old son Landon was just diagnosed 4 days ago with ALL pre-b cell. I'm a single mom in the middle of nursing school, so we have so much that has to change. I'm still a little in that "this isn't really happening" phase, and I can't really believe my baby is so sick. I'm terrified, hopeful, exhausted, encouraged, and strong all at the same time! Reading your posts is helping me out a lot. He's having such a rough night tonight with headaches and tummy aches:(

Darcy - posted on 06/03/2012

HI, I am Darcy, my son Davis was diagnosed with Tcell ALL in Septmeber 2010 @ the age of 2yrs. He has been in remission since October 2010. He's been on Maintenance for a year now...and he turns 4 on June 5th. He will be treated for 3.5 years. He is the youngest of 3 and is doing very well. He has some issues, but over all I can't complain.

Laura - posted on 05/26/2012

My son Joshua will be 4-years-old on the 4th of June. His father and I found out just two weeks ago that he has ALL. We are still in the beginning phase, obviously, but he's doing great so far. We were only in hospital for a few days when we got news that no cancer cells were seen in his blood anymore! His twin brother had a bad time being separated for the duration of his hospital stay and had even told people that Josh had died. :( Thank fully Josh is home now and still responding well to chemo. Hope his next bone marrow test comes back with some good news. :)

Stephanie - posted on 06/03/2010

I'm glad she's doing so well after going through so much! I know the feeling, I follow so many people and see them relapsing, getting infections and not making it, it's just horrible! I really try to take things one day at a time and focus on our immediate situation, which is looking well at the moment. We all have those worries and it's completely normal. I keep wondering when I'll be comfortable going without his mask in public or worrying every time I see a bruise. We're in maintenance and have a year of chemo left and I'm even having a hard time adjusting to being at home and not living in the hospital! Counts *only* every 2 weeks, when I was used to daily counts. It sure is a lot to get used to. I hope your daughter does well in her development and doesn't ever have to go through anything like that again. Feel free to add me on facebook if you want, my little trooper is 15 months old now. :)

We have a more active group on Facebook just for infant Leukemia moms. It's called Infant Leukemia Support Group. The moms on there are all great and have helped me through some horrible times and are all very nice.

Danielle - posted on 06/03/2010

My daughter, Charlotte, was diagnosed with AML with cytogenetic translocation 9,11 at 9 months old. She had 6 rounds of chemo and an autologous stem cell transplant and is now 18 months old and almost 4 months out of transplant. There doesn't seem to be many current posts on this group, but I'm having a very hard time adjusting back to 'normal' life, I'm constantly terrified of relapse and infections and I'm wondering if anyone has any words of wisdom???

Stephanie - posted on 04/03/2010

My son was diagnosed with ALL at 4 months old. He's currently 13 months and in maintenance. He'll be done with chemo June 2011. Sounds like a very long ways off, but we've come a long way and have had a bumpy road, so I'm just glad to be in maintenance and still doing ok. His site is www.caringbridge.org/visit/tylerburdick

Chelsey - posted on 03/11/2010

hi my name is chelsey, and my daughter was diagnosed with ALL on febuary 6th 2010 she is 4 years old we just finished our induction the 1st 29 days and they say that shes done well shes a rapid responder and she is in remission !

Sarah - posted on 12/08/2009

Hi my name is Sarah and my 14 month old daughter was just diagnosed with ALL about a month ago. She started getting fevers around her birthday and we couldn't figure out what was wrong. Finally the doctors took a blood test and this is what we found. We are still in the new stages of all of this and things are just going. Her Leukemia cells have not all been affected by the chemo yet so we may changing course. We will see.

Brenda - posted on 10/11/2009

My son Ty was diagnosed with ALL type B cell on January 26, 2009. He is 8 now and finally have hit the maintenance phase of this long journey. Looks like we'll be doing treatment until May 2012. We've had one big bump in the road with and ANC that hit 0 for 2 weeks but all is good now. He's been a strong little man during this and for that I am thankful. I am a single Mom of 3 wonderful kids and I work full time for a fabulous company that allowed me to care for my son when he needed it most. Our Dr's at Children's in Mpls are some of the best...God Bless them!

Jillian - posted on 07/15/2009

Hi. My son Elijah, who just turned 3, was diagnosed with ALL on May 4th. We are 2 months into treatment so far. He is doing pretty good so far. Been inpatient for a fever once so far. Im glad I found this group, there is so much to learn about Leukemia and what my son will go through, I know it will help to talk to other moms who have been through this also!

Joy - posted on 05/26/2009

Hello! Our daughter Jana was diagnosed with High Risk ALL on Dec 26, 2005. She was 1 year and 1 month. I had her in on Dec 2, 2005 for her 1year check up. The Dr. checked her counts at that time and everything was normal. On Dec 26.... a different story! She finished her treatment April 2008 and we have moved on to quarterly visits at Children's Hospital (Minneapolis). Quite a roller coaster...She's healthy and all is well :) Lots of support from good friends and co-workers made this journey easier to exist...Along with help from sitters during the roughest chemo treatments.. High Dose Methatrexate, Dexamethasone, feeding tubes and many IV bags...She's healthy!

Michele - posted on 04/22/2009

Hi! I am so glad to find this group! My son Kyle was dx'd in Jan. '06 at 6 and a half y.o. with pre-B ALL. He just received his last treatment in the end of March '09. I was a stay at home Mom until 3 months ago and went back to work part time as a hairstylist. He just had his first OT check up today and every thing looks good!

Amy - posted on 03/25/2009

Hi everyone.  It's good to find other onco moms out there.  Our son Vinnie was diagnosed with pre-B ALL on August 13, 2008 when he was 6 years old.  We thought he had a little virus because he had been tired and had run a fever for 2 days.  His pediatrician felt his enlarged spleen and liver and sent us right to the ER.  Vin has had a few bumps in the road, including a nasty case of shingles that put him in the hospital for a few weeks, but has overall done well so far.  He's in the Maintenance phase of treatment and has been battling some high liver counts, but otherwise feels pretty good.  The entire family has a new appreciation for life and a new hatred of steroids (all you onco moms know what I'm talking about).

Michelle - posted on 02/28/2009

My son Michael was diagnosed with ALL on September 20, 2001. He was on chemo for 21/2 years. He is now 10yrs old and has been cancer free for 71/2 yrs.

Susan - posted on 02/18/2009

My son Dimitri was diagnosed on June 7, 2008 with Pre B-cell ALL.  He just turned 6. He is in remission! We've been through a rollercoaster ride but now he's doing well in "Maintenance". He went back to school a few weeks ago but caught a bad cold and had to stop the daily chemo pill. I'm afraid to send him back again. He's very smart and very funny. He has a little sister named Angelika, she's 4. I work full-time as a Database Supervisor and thankful for the great medical benefits. I'm glad that I can be part of this community.

Kristi - posted on 02/12/2009

Hi Natasha,

I am glad you found me too! Kellen is doing great and you are the first person I have talked to that has a baby with AML mostly older children or teens and of course adults which is most common. I am so happy to hear Austin is doing so well with the chemo. Kellen went through 3 rounds of chemo before transplant based on his study he was on. Isn't it amazing how well these little ones take everything that is happening especially the chemo?? Kellen was hardly sick after the first round. Well I would love to talk more you can email me anytime if you need to talk to someone who knows what you are going through!! Stay positive :)

Kristi

Natasha - posted on 02/12/2009

Kristi!!

 So glad I found you. Our six month old is just finishing treatment for AML. He was diagnosed at two months old. We are nearing the end of the 5th round of chemo... (he is a little more than six months) he has been in remission since the end of round one. Since Austin didn't have a "perfect match" in his brother - the docs decided against transplant. Saying he is too young for un-related unmatched donor. He has zero blasts and the chromosomes look good, so they think he may not need it. Of course, relapse could always be right around the corner...and I know that. We were/are treated in Florida. Thank you for sharing your story...as AML is rare with babies - I've found a few. I hope we can connect again. I'm going to check out his site!!! Natasha

Kristi - posted on 02/07/2009

Hi,

My son Kellen who is 16 months was diagnosed with AML on June 6, 2008 at 8 months old. I was told it is pretty rare for a child his age to have AML and that ALL is more common. Kellen was able to have a Bone marrow transplant on 11/20/08. His older brother Jared was a perfect match. He left the hospital (Childrens Hosp LA) on 1/9/09 and he is doing wonderful. We feel very blessed that he is doing so well!!! He has a website that I have his whole story and updates on.... Thanks for reading his story and I hope it helps other families that are going through this....I tell everyone I meet to stay positive no matter what! It really makes a difference!

Kellen website

http://www.caringbridge.org/visit/kellen...

Janis - posted on 02/07/2009

It's funny, a nurse at the clinic the other day, couldn't believe we were in the delayed intensification stage already!  She thought it had gone by really fast.  Although it seems like a whirlwind to me, I just can't help being anxious to have this all over and done with.  I can't believe we'll be dealing with chemo until dec 2010! Crazy!

Janine - posted on 02/07/2009

My daughter Ava was diagnosed in May of 2006 with pre B-cell ALL. We have until July 23, 2009 and she will be done treatment! I am a med-surg nurse so that helped take care of her and deal with all this stuff.

Janis - posted on 01/10/2009

Quoting Maria:

Hello my name is Maria. My son Johnny was diagnosed with Acute Myeloid Leukemia on Jan. 10, 2005. He had intense chemo for six months and went into remission. We did have a few bumps in the road. At one point he went septic and we almost lost him. He has been cancer free for almost four years.

Wow Maria! I guess his counts were so low he couldn't fight off an infection?  We have been lucky so far!  How old was he when diagnosed?  I'm glad to here he's been cancer free!  It's quite the journey though isn't it?

Maria - posted on 01/08/2009

Hello my name is Maria. My son Johnny was diagnosed with Acute Myeloid Leukemia on Jan. 10, 2005. He had intense chemo for six months and went into remission. We did have a few bumps in the road. At one point he went septic and we almost lost him. He has been cancer free for almost four years.

Janis - posted on 01/07/2009

My daughter, Paige, was 4 in september 2008.  Diagnosed that month with pre B-cell ALL.  Will be treated until December 2010. I'm a neonatal nurse, which can help and hinder during a health crisis like this.  I've been married for 10 years to my high school sweetheart.  We were in the middle of fertility treatments when Paige was diagnosed so she's our only child at this point.  I am on leave from work until April 2009.