The Leukemia & Lymphoma Society - Fighting Blood Cancers
45 Replies Latest reply: Sep 28, 2011 8:55 PM by burmang RSS

ALL survivors

Fontenrose Registered Users
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thread started by braveheart's mom. Read for a boost and add stories!

 

I have been following a few Caringbridge sites over the years. I don't personally know these children or families, but I find them through links. It seems like as I read them, more and more kids have been relapsing with their ALL. I know that ALL for the most part has good prognosis but when you read these things, you just wonder about the positive stories.

If anyone out there knows of girls and boys treated for ALL, completed treatment and are now considered survivors, can you please post the story - it would really help!

Thanks.

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Nice positive thread! Ok, I have a little story. My wife and I and daughters went to one of my sister's wedding earlier this year. (By the way, my sister's name is Patience, fitting for my little story here). Our Meg was very excited and danced the night away. At the time, Meg was completely bald and a little puffy (as you all know too well). After dinner, at the reception a young woman walked up to my wife and asked if her child had ALL. She knew. It turns out that she was 24 years old. She (Marissa) had ALL when she was young (starting at 7yrs old)...so, that's some 17 years ago! She was in perfect health.

It's kind of odd in a way, but we were elated to meet her...for the same reasons as this is a good thread to have. The effect she had on my wife in coming over and introducing herself was fantastic. It's great to see the good side, especially when it is standing in front of you. Marissa is planning to get married soon and ready to start a family.

She was a delight, an inspiration, a positive beacon of where our Meggie will be when the dust settles.

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I hope you get lots of responses and encouraging stories from the survivors and their families. My son Ben is a survivor and I am so proud of him. He has been done with treatment for about 6 months. I’m not going to say I never think about relapse, but our family tries to keep a positive outlook and live for today and move forward with the mindset that we are done with cancer and that chapter of our family history.

Ben was so young at dx (2 ½) that he will likely not remember most of his treatment. For that I am thankful, but we learned so much from the experience we never want to forget. So many people were so kind and prayed us through, we now are trying to pay the goodness forward. I guess that is why I still come here, to read about and support those that are in the heat of the battle.

We thank God everyday for the miracle of modern medicine, and the healing Ben was granted. There is much more medicine can and will do in the future, but for those still facing the cancer monster, and those whose loved ones passed on, our thoughts and prayers are with you.

I also have met someone recently that is married to 23-year-survivor of ALL. He was even treated by the same Oncologist that Ben saw! There are many stories of hope out there, thanks for starting this thread!

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I hope you get lots of responses and encouraging stories from the survivors and their families. My son Ben is a survivor and I am so proud of him. He has been done with treatment for about 6 months. I’m not going to say I never think about relapse, but our family tries to keep a positive outlook and live for today and move forward with the mindset that we are done with cancer and that chapter of our family history.

Ben was so young at dx (2 ½) that he will likely not remember most of his treatment. For that I am thankful, but we learned so much from the experience we never want to forget. So many people were so kind and prayed us through, we now are trying to pay the goodness forward. I guess that is why I still come here, to read about and support those that are in the heat of the battle.

We thank God everyday for the miracle of modern medicine, and the healing Ben was granted. There is much more medicine can and will do in the future, but for those still facing the cancer monster, and those whose loved ones passed on, our thoughts and prayers are with you.

I also have met someone recently that is married to 23-year-survivor of ALL. He was even treated by the same Oncologist that Ben saw! There are many stories of hope out there, thanks for starting this thread!

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A co-worker's son was diagnosed at 2 yrs old in 1990.  He is now a healthy 20 year old college student.

Also, a young man from our clinic just got married this past summer. He was diagnosed with t-cell ALL at age 15. He is a successful attorney and presumably happily married : )

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Well, getting close.

Sam, diagnosed high-risk pre-B ALL, 1/15/2004 at age 15, finished treatment 5/1/2007.

1+ year off treatment, will be a sophomore in college this fall.  All looks good.

Doug

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My son will be finishing his treatment for ALL in Sept. He has so far done very well and I am happy to say, pretty eventful-free since dx in June, 2005.
I recently met a new neighbor who's child (boy) was dx with ALL as a 3 yr old.  He is now graduating high school.

Lina

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My daughter was diagnosed with ALL a few months after turning 10 yrs. old. She has Down syndrome. She has been off treatment for 5 yrs. now and is doing great. She will be 18 yrs. old next month.

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At my hair salon, there was a stylist who was diagnosed at 3 years old and was doing well at 24. Ben's onc's nephew was diagnosed at 4 and she told us that he just graduated from college! Like you, I love hearing stories like this. :-)

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After my son was diagnosed with t-cell ALL at 16 months old, I received a letter from a family friend and she told of her son who had t-cell all in 1980 when he was 18 years old. He is now in his 40's and is doing great. I have also heard other stories of children who are doing great after being diagnosed with all as a young child. So I know there is hope for our children.

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My daughter is 4 years out from dx (next month) and 19 months OT. So far so good. I have a friend that was dx when he was 14 and though he had a very rough time, relapse and early BMT, he is alive at 37. We also met a young man during a hospital stay that was treated by one of Katheryns doctors when he was young. He was doing rounds with the attending as he is a doctor himself now.. We went to a fundraiser/auction last year and met a young man that was 15 years out from treatment and doing very well. I just wish it would happen for ALL of our children.

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Wow!

Thanks so much everyone for sharing these hopeful and positive stories. I, myself, have heard many after my son was dx, but I wanted to hear more from all of you and people you know.

Please keep the stories coming, not only is this theraputic for us, it just helps us to realize that despite negative situations we hear of, there are many great success stories.

Again, please keep them coming!

To share a couple of my own:

A nurse that treats our son told me that she has one boy that was treated when he was my son's age (toddler) and he is now going to medical school.

She also told me of a girl they treated way back when and she is now a nurse.

When I stayed at the Ronald McDonald House after my son was diagnosed, I met a woman there and told her what my son had and she said "oh, my husband had that too when he was young - now he's the healthiest person in our family"

My husband's step-cousin had leukemia when she was young and she is now in her late 30's

My son's onc's wife had ALL when she was three and she is now almost thirty with a child

etc., etc.

Like I said, I've heard them too, but it is sure nice to hear as many as we can possibly hear to add hope!  I can't get enough!

Thanks again

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I attended a Hail & Farewell for some Marines today.......One of the civilian workers just found out about Tomas' dx of ALL. It turns out his sister-in-law is an ALL survivor.

I talked to his wife about her sister as we were waiting for the food to arrive. She was dx'd in 1981 at the age of 5. She is turning 33, is married has two children and is a high school teacher in Indiana.

First four years were hard but now she only does annual check-ups.......life has been very good to her.

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Thank you Braveheart's Mom for starting this thread and thanks to all who have responded! Here I am at 1 am crying while reading your responses...not from sadness, but from a renewed sense of hope. Just what I needed...

Our daughter (age 7) is in the middle of DI. She is constantly complaining of pain in her joints and her lower back. She has a very high threshold for pain so I know it must really hurt. I can't fix it. She can't sleep. It scares me and makes me worry about all other reasons it could be from besides side the effects of chemo. I usually try not to "go there" and stay positive, but tonight I just couldn't.

So, again thank you. I think I will finally go to sleep now! Yeah!

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Leo was diagnosed with intermediate risk pre-B ALL in September 2005 when he was 10½. He completed treatment on March 8th 2008, so he has been OT for 3 months now. I would say that he is now leading a very active life. This spring we have been skiing & snowboarding in northern Sweden and in the Swiss Alps. We have built a couple of serious skateboard ramps and he performs death-defying stunts in the street daily. He practices soccer 2-3 times a week and plays 1-2 games as well. On Monday he's going to a 3-day soccer training camp in Denmark (on his own). Last week he played 3 consecutive whole games in a soccer cup. So far he's doing great.

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My Husband works for a man who is was DX'd with ALL at 17 and is now over 20 yrs. in remission. He does have some side effects from treatment but nothing major.

There is also a boy in our neighborhood a few years older than my son that was DX'd with ALL when he was a year old and has been in remission for about 10 years. It is such a comfort to see him running around and playing!

What a great thread! We all need the encouragement!

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This is the best discussion ever. I too had tears reading the stories, it is like such a relief to know that it can really happen.
You really can beat this awful disease!
I didnt get a haircut for almost a year after Niko was diagnosed...When I finally went in, the lady asked where I had been, after telling her about Niko, she said "this guy I am dating had that when he was little, and now he is great".
I could read these stories all day...MORE PLEASE!!!!!!!!!

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Ian went to his oncologist appointment several months ago and there was a young lady there checking his vital signs. She was a medical assistant student doing her clinicals through the oncologist. Come to find out, she was a patient of the onc over 15 years ago. She is now in her early twenties and she seemed fine. It was great for Ian to hear that she once had leukemia.

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Denise was dx'd at 6 1/2 yrs. old with pre-B SR ALL and is now almost 9 mos. off treatment. So far, so good! She is very active, happy and feeling great!

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When Darya started 1st grade, she had just come off a summer of DI and was completely bald. I cried when she went to school, wearing a hat and all bloated from steroids. Turns out her 1st grade teacher was a childhood Hodgkin's Survivor! No other teacher could have taken her in and understood her the way she did. Darya is a very active 10 year old ready to start 5th grade soon, loves sports.

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I too enjoy reading and hearing success stories of A.L.L survivors. I had been working alongside a beautiful healthy 28 yr old, and only after finding out about my daughter, did this coworker of mine share her ALL survivor story. She was treated 26 yrs ago and is doing great and has a beautiful head of hair (she went bald twice). I know that this was a sign, an inspiration for me to remain positive with my daughter. It's the best thing to do for your soul and your child's recovery. REMAIN POSITIVE Our children are survivors 

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Ryan was 15 months old when he was diagnosed with high-risk ALL (MLL rearranged). After ridiculous amounts of chemo, hospitalized days (100? More?), TPN, NG feeds, and many bumps in the road, he is one year off treatment and headed toward his 5th birthday at the end of June.
I love long term survivor stories, too, and wish every one of our kids could have one.

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Mary Kate was DX with pre-B ALL on Sept 4, 2001. She had some side effect problems, lost her hair 4 times, but pretty much sailed through her treatment compared to a lot of other kids I have seen on here. She finished treatment in March of 2004, and has been enjoying life very much ever since. She was 6 at DX, and just turned 13. Her hair was down to her waist before she cut it a month ago. She and her twin sister, Sarah are going into 8th grade. They hold a hot chocolate/lemonade/brownie stand every year to benefit the Leukemia and
Lymphoma society. I still go in her room and watch her sleep.

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I had to echo Sharlyn's comment I can't stop the tears of joy. Just what I needed. Today is 2yrs since my son's dx.

Sharlyn
Member   posted 06-14-2008 04:06 AM                
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Here I am at 1 am crying while reading your responses...not from sadness, but from a renewed sense of hope. Just what I needed...

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One of the nurses in the peds department of our hospital is a ALL survivor, she comes in and talks to us every time we are in there!! I is so encouraging to us. Also one of the local DJ’s of a local radio station has a son who had it when he was 4 and he is going into college now, he was treated by our onc doctor. There are so many survivors; I tend to hang on their every word!!

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During Mady's initial inpatient induction, we were all inspired by a wonderful story... I found out that a young woman that I work with had AML 12 years ago when she was 10. Coincidentally, she spent an initial 3-month stay in the very same room as my daughter, and is now completely cancer-free.

What we found most amazing, is that she says that if she could trade her current life for one in which she grew up without cancer... she wouldn't trade. She would not give up having had cancer. She is quite certain the experience made her stronger, more passionate, and more focused. She knows that her cancer surviorship made her a better person.

Mady really enjoyed meeting her and was facinated by her story.

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Our local butchers son had ALL at age 7, he is now striving towards 20, we know another 23 y/o woman who had ALL at age 2, another woman now aged 24 with 2 kids Dx ALL age 3, and I know a few more as well.
Alyvia our daughter Dx 12/21/2004 remission 4/18/2007 and striving, runs cross country, plays tennis, piano, singing lessons and swims like a fish, she is 1 year out heading for the 5 year mark, then I may relax-a-little.

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I just want to keep sharing survivor stories...

I just got back from our local hospital (not his treating hospital) where Christopher had a CBC done due to changes in his meds.

As they reviewed his paperwork, one of the lab technicians heard his doctors name and mentioned that her brother had been treated for ALL when he was 1 1/2 years old by the same doctor. He is now a healthy 16 yr old.

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Last February, the first time I went to give blood, I met a 24 year old young man who worked for the Red Cross who was an ALL survivor. He had it was he was 12 or 14.

Abby just finished treatment a little over 3 weeks ago! :-)--

When Sarah was dx'd with ALL at age 12 I found out that a woman I used to babysit for was a long term ALL survivor-she was then 27 and had been dx'd when she was 10-was doing well and had 2 lovely kids!

Sarah herself will be OT 2 years in late August, and just flew to Spain on Monday. She's spending a month with one of her friend's grandmother.
Funny thing is, if she'd never had cancer I probably would have been too scared to let her go so far away (we live in Virginia)and she would have been afraid to go.
Nothing scares us now, we've become quite brave 

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My son just turned 7 on June 9th and he is now 16 months OT for ALL. I met a ALL survivor in her late 30's a couple of months ago and we talked about her treatment over the years. She said it was very hard for her because back then they didn't sedate or give meds before a spinal tap or bone marrow aspiration and she was in so much pain but her mom was her savior because they would go on "trips" in her mind during the procedure and that helped her out with the pain a little. She says now she has such a high pain tolerance that when she goes to the dentist to get work done (cleaning, cavity, etc) she doesn't even use the lidocaine. I was in such awe by her strength, however, even though she is a survivor, she ended up with a lot of late of effects and medical problems but she did have a friend that was also a survivor and she went on to have 2 girls. She said it was hard because back then when kids got cancer, there was no survivors to look up to and she became one of the first in the group of childhood survivors to make it.
I personally haven't come across hardly any childhood ALL survivors that are older and I am amazed by all the other posts about ALL survivors. I'm so glad that my son is now part of all the childhood ALL survivors!

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my son travis was dx at 2 1/2. he went through his 3 years and 2 months of chemo and is now going to be 7 in sept. hes doing great and has been off tx since march of 07. over a year now.

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One of my son's oncologists was dx with ALL at age 2 and is now in her 40s and has devoted her adult life to the treatment of leukemia! She told us this minutes after my son was dx with ALL back in June 05 and it always gave me great comfort and hope for the future. Kyle is 6 months off treatment and doing great!

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When i told to my manager about my daughter has been Dx'd with ALL he said his wife was Dx'd with Neuroblastoma when she was 5yrs old and she in her 30's with perfect health with two kids.

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Gabriel was dxed with Pre-B ALL just before his ninth birthday. He has been OT for 21 months. He plays on his school's hockey team without even a limp anymore. He just took his regents and finals and did beautifully. I was worried about his cognitive skills after having treatment and it seems like Leukemia is in the past in many ways. We still worry and have concerns but I am told that is normal. Two of Gabriel's closest "Cancer friends" are off treatment for over two years and doing just as well. Good luck to all of you out there. I wish all of you strength and health!

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I needed this today. Thank you all. It seems in the last week I have had 3 people come up and tell me relapse stories. Now, why would you do that?

On vacation a few weeks ago, my husband ran into an old business school professor of his at a AAA baseball game. When he saw Eli he asked which kind of cancer he has. Turns out his daughter is a 10 year survivor of AML and doing great.

It really is a small world.

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Zach was DX 4/04 with preB ALL and has been off treatment since 10/06 and is doing good.

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I was dx in oct.1986.I had a blood count of 3.7. a normal blood count is 14 or 15.I went to 3 different doctors.None of them could figure out what was wrong.Finally I went to see a new dr who just opened his practice.He diagnosede me with ALL.I'VE had three different protocols of chemo.The first chemo I was in remission for 6 mo.I had a relapse. Started a 2nd chemo protocol.In remission for 6 mo.They found a marker called a Philedelphia chromosome. Which is why I kept relapsing.My final protocol involved super mega doses of chemo and total body radiation and my missmatch transplant.I've had a few minor problems here and there.But i can't complain to much because I got a 2nd chance at life.Ihave 2sons and I work in a window factory building geometric windows.I ride my harley davidson motorcycle as much as I can.I am 37 years old and life is good.When i can i like to stop at the hospital in champaign Ill to talk to any of their cancer patients to answer any ?s they may have and to tell them to keep a positive attitude. I'm living proof you can beat it.

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I'll like to add my story. Although my daughter was not fortunate enough to have ALL she had AML (which is suppose to be worse). However she went through 7 months of intense chemo at 15 months of age. She is now 3 and is doing well. No problem throughout her entire chemo, no infections or anything. She will be starting headstart this August. Playing and having a great time as any other 3 year old. I know you were looking for ALL patients but I thought I would add her story as well :-)

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OHHHH I love this thread!My daughter was diagnosed at age 12 High Risk pre-b cell ALL (high risk only due to her age)
She turned 15 in March, went O/T in May and will be a sophomore in HS this fall.
The best part? She was well enough on treatment to return to her beloved soccer field 4 months into treatment (yep, during D/I), only had one unplanned inpatient stay for neutropenia (7/07) and tried out for and made a Premier level soccer team in LTM.
You want hope? Thats my Morgan.

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My daughter was dx 10/07 with ALL. One of the NP's that occasionally does the LP's at the clinic is an ALL survivor, who also had a normal pregnancy and delivery this spring.

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Jameson (or better known as Jamo) has been off of treatment since October 2007 and is doing WONDERFULLY!

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My neighbour's daughter is now 5 years off treatment from ALL and enjoying college. She had a lot of side effects and delays in treatment, but all fine now.

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A more recent update on Sam to encourage those still on the long journey -- 18 months off treatment now (after the 3 1/2 year pre-B H.R. ALL protocol), sophomore in college at Tufts University, played on the J.V. soccer team this fall, and just climbed Mt. Washington and the Presidential mountains with a bunch of his good friends on a camping trip. He's on the Cycling team for the spring semester. Majoring in Environmental studies, or biochemistry, or maybe both.

He's feeling great.  Checkups have been clean.  Crossing our fingers and just enjoying every day.

He'll be home tonight for Thanksgiving.  

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What a great topic just in time for Thanksgiving!

Laken was given a 30% chance of survival when dx'd at 3 1/2 mos. of age (ALL/MLL+ infant leukemia).

Four months of intense chemo followed by donor cord blood SCT at not quite 8 mos of age (while in first remission) = a now almost 4 yr. old little girl who looks like she has never been sick a day in her life.

Yes, the road has been a long and very frightening one, and I still write this with some still very real fear of "jinxing" things (will that fear ever entirely go away?), but to see her now . . .

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Even though I posted earlier, I wanted to share that last Friday Katheryn celebrated 2 years off treatment and 4 years and 3 months in remission. Right now, enjoying High School and loving every minute of every day. I am so proud of her! Lisa

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One of my sons oncology nurses had ALL as a child and is 20 years in remission. She was truly a blessing because we had her within the frist week of dx and she gave me such hope when I felt so lost. Also, we recently found out that a high school friend of my husband had ALL as a kid and is now 15 years in remission and doing great.

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Happy Thanksgiving everyone. My daughter Kayla, dx May04 with HR ALL (MLL+), has been in remission for 4 yrs and 5 months and OT for 2 years and 2 months. When I went back to work 2 years ago, I met a woman who had a 35 yr old niece who was dx at 2. She has 2 beautiful kids and is doing great.

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Well, we were in the hospital this last weekend. My mother went down to relax in the courtyard when a man came and sat down by her. They started talking and she told him she was there with Kaeden. He then goes on to reveal his 29 yr old daughter survived ALL. She was 2 yrs old when dx and she survived. He told my mother how his daughter STILL did not visit hospitals (her grandmother was there that day) and that she stayed out of crowds of people. He said that she still had blood test annually (Something I did not know Kaeden would have to do for so long) and that she "told off" her oncologist at the age of three. He also revealed that she had terrible anxiety/anger when she was going through the chemo. (something that Kaeden suffers from)

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thanks for this post, it is so encouraging. Jasper started a new elementary school this fall and there are two students before him who successfully went through treatment and are living very active lives. Also, his babysitter's best friend had it and is a sophomore in high school. I just pray everyday that he keeps healthy and strong and watching him sleep is also one of my favorite things to do.

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My son Chad was dx'd at age 20 with T cell ALL/LBL. He relapsed in the CNS while on continuous extensive chemo since his dx. He underwent his transplant 11/06. He is today two years post transplant, he's going to college and working full time and enjoying life. We got the news today his two year scans were all clear! Yeah! Now I can breathe for another six months...

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Denise is 15 months OT and doing wonderfully! We go to the clinic every 3 months now, so life had pretty much gotten back to normal at this point.

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I just sent a Christmas card to a woman I've never met, but who reached out to me through my mother in law. Her daughter had ALL as a child and is now 18 years old and graduated to a regular doctor!

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My daughter was dx in August 2005 at 23 months old. She has been OT for almost 18 months now and she is doing great. She started kindergarten last fall only a couple days after her 5th birthday, and she was the youngest child in her class AND the only one who could already read. We are especially proud of this since our onc told us at the beginning of treatment that due to the chemo she might have trouble learning to read when the time came.

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We met an ALL survivor Friday night. She has been OT for 5 years now, and she is a sweet, outgoing 10 year old who plays soccer, rides horses and does cheerleading. We met her with her family at an LLS function.

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My daughter finished her leukemia treatment in the hospital due to low counts/fever. A man here in town said, "oh that is just what happened to my daughter!" His daughter had A.L.L when she was younger (6 years or so) and ended treatment inpatient for the same reasons. She is now 17 and looking into colleges to attend!

 

 

PLEASE ADD MORE STORIES OF ALL survivors...

  • Re: ALL survivors
    Jakob'sMom Registered Users
    Currently Being Moderated

    As of next week Jakob will be 2 years, 2 months OT (dx at 2 1/2 years old).  He is currently in the first grade, plays a variety of sports, and suprisingly his memories of the hospital are good ( being able to play unlimited video games).  He just graduated to going every 3 months and at his last appointment his ANC reached almost 5000!  All counts are good and even though relapse is always in the back of my mind, he is relatively healthy.  I'm so glad to see there are many other survivor stories out there as well!

  • 18 Months Off Treatment...
    marerush Registered Users
    Currently Being Moderated

    Hi, Everyone!

     

    I am excited about this new layout!  My daughter Jameson was diagnosed June 15, 2005 and has been off treatment since October 2007.  She goes in to get blood drawn every four months now and our next visit is this Monday (gulp!).  Yes!  I still get anxious and the minutes it takes to get the lab results back are excruciating.  She is doing awesome emotionally, socially, and physically.  I have been a longtime member of the other L&L Board and hope to see some familiar names and faces!!!!!

     

    Marion

    www.caringbridge.org/visit/jamesonrush

  • Re: ALL survivors
    Hope_Floats Registered Users
    Currently Being Moderated

    Thanks so much for saving this for us to reread...These stories are worth so much!

  • Re: ALL survivors
    momof7 Registered Users
    Currently Being Moderated

    The only person that I have ever met outside of the hospital was the following:  Having purchased some china for thanksgiving last fall,  I needed that saleslady to help me get the stuff to the car.  We got to talking about stuff and I casually mentioned to her that my youngest son had T-cell ALL.  When I saw the look on her face , I thought, Oh my God, this woman has had someone very close go through this.  So she told that her daughter at the age of four had been diagnosed with t-cell as well .  Not knowing whether her daughter had survived or not I was sort of reluctant to pursue to issue,, not wanting to upset her.  So she told me that her daughter had survived and was now 27 years old  rooming with another ALL survivor of her "group" (two of the few).  They had become best friends.  I was so happy to hear of a good ending for once, for in the hospital  , as you all know, you tend to hear of all the relapses instead.

     

    This short encounter gave me a lot of hope, especially since treatments have been somewhat changed since the mid eighties.  It has kept me very positive ever since.

  • Re: ALL survivors
    pattylucybelle Registered Users
    Currently Being Moderated

    I, too, love reading these posts!  Let me chime in - Denise is 19 months OT and is doing great!  She is finishing 4th grade, playing basketball and is very active.  I tell her she is like the Energizer bunny!

    • Re: ALL survivors
      hero4 Registered Users
      Currently Being Moderated

      just bumping up.....

      • Re: ALL survivors
        mom23 Registered Users
        Currently Being Moderated

        Thank you for putting this up......I havent seen them.  There should be a book with all these stories in it.  That would be a great thing to hand the parents of children in the early stages....well any stage for that matter.  There is nothing like hope to help you through!!

  • Re: ALL survivors
    Djlawman Registered Users
    Currently Being Moderated

    I'll see your bump, and raise you a picture. 

     

    Here's Sam down in the Galapagos last month, on top of Bartolome Island.  He's 5 yrs. & 3 mos. in remission, and 2 years, 1 month OT. 

     

    Sam on Mountain.JPG

    Doug

     

    PS -- scenes from this island were used in the movie "Master and Commander" starring Russell Crowe.

  • Re: ALL survivors
    hero4 Registered Users
    Currently Being Moderated

    Great picture!  What a good-looking guy!

     

    As for the book - I'm all for it - it truly does the mind good when you're going through this....

  • Re: ALL survivors
    Fontenrose Registered Users
    Currently Being Moderated

    bumped up for those who have joined us recently

  • Re: ALL survivors
    hero4 Registered Users
    Currently Being Moderated

    Bumping it up for inspiration purposes!

  • Re: ALL survivors
    ColbysMom Registered Users
    Currently Being Moderated

    I haven't been able to get on this site (due to technical issues) well since they moved the lls boards...for some reason I tried again today and it worked!! Maybe our story will help someone today.   My son has been off of treatment for T-cell ALL one year and 7 months!! dx 6/15/06 at the age of 3. He had an extremely high WBC count at dx over 800,000. I remember searching for anyone who might have had similar counts at dx for some reason it helped me to read their stories so I hope my post will help someone too. Hugs to you all. www.caringbridge.org/visit/colbyclingerman

  • Re: ALL survivors
    CTMom Registered Users
    Currently Being Moderated

    Thanks for the bump up.  I enjoyed reading all of the survivor stories again and I'm thrilled to now be able to add my son to the list...

     

    Zach, dx high risk t-cell ALL in Sept 2005 (age 9), is now OT for 1 year and 2 months.  We just started going to the clinic every other month - yeah!  My son is now 14 years old and doing well with no major late affects.

     

     

    Lisa

  • Re: ALL survivors
    Alex'sMom Registered Users
    Currently Being Moderated

    Bump  up  the morale a bit.

     

    It seems like lately all I have heard about is kids relapsing or loosing their battle. Particularly those who finished treatment years ago and that danm cancer reared it's ugly head again.

     

    Is anyone else having a hard time staying positive???

    • Re: ALL survivors
      StillSarah'sMom Registered Users
      Currently Being Moderated

      It can be hard to stay positive, so now would be a good time for those of us with positive stories to chime in!  Sorry, I check in a few times a week but seldom post anymore, but there was a time that this board was my lifeline!  I have grieved, laughed and cheered and waited for news with many of you over the years.

      I'll start the 'ball of positivity' rolling, and hopefully more will join in!   There are a lot of long time survivors still chugging along just fine

       

      My daughter was dx'd with HR ALL, pre-b, at age 12 in January of '04.  Finished treatment August of '06. She turned 18 this year, is graduating from HS, has a part time job she loves, and is looking forward to college in the fall.  We had a middling treatment experience-not as bad as some, but not as easy as others. I can remember thinking that if she ever got to go to high school, or get her driver's license, or even (shudder) kiss a boy, I would be the happiest person on the planet! 

       

      In August, it will be 4 years since she went OT.  We've had a couple of mild scares-her platelets just did NOT want to recover the first year and it drove me nuts-but overall it's been really good and we've moved on.  It takes a while, but it happens.  She's been to Spain twice, once flying all by herself!  She's learned to take a fish off the hook, has passed 5 Advanced Placement tests in HS with a 3 or better and has taken up the guitar.  She got her belly button pierced.  She has even (shh, don't tell her dad!) kissed a real live boy!

       

      So, hang in there!   Many survivors are out there.  Sending hugs, good vibes, prayers and lots of positive energy-see, covering all my bases-to all of you still in the trenches.  My thoughts are with you always.

       

      Patty

  • Re: ALL survivors
    aspeidel Registered Users
    Currently Being Moderated

    I just saw this and read through some of the good stories and had a  couple to share.....

     

    1) I work at a high school where there are two ALL survivors that I know of...The first is a boy who is a senior this year.  A strapping young man who was a captain on the football team this year.  He was dx w/ALL (not sure B or T cell as at that time I'm not sure if it was differentiated) when he was about 1.  You'd never know looking at this kid that there ever was anything ever wrong with him.  He is such a nice young man who when hearing about Aidan's dx last year came down to meet talk w/me and send his support.  Just seeing him was support enough!

     

    The other person is a junior who just had her 5 yr cancer-free anniversary last year!   She had ALL.   Her mom was one of the first people I spoke to when Aidan was dx as she's a part of LLS support group. Her daughter is a very bright young lady w/a very promising future.  She is also an athlete and so kind.  Very encouraging....

     

    I forgot there is another young lady that has lymphoma and her too you'd never know anything was wrong....She is a cross-country/track n' field runner.

     

    2)The last I'll share is when Aidan was dx one of my family members was chatting with someone at our local ER (Aidan was there cuzhe was having his Peg reaction) who asked if Aidan had cancer (it was pretty obvious at that point) and the woman then proceeded to share about her 30 something year old son who had had ALL as a child and was about to become a father.  That was such a great thing to hear about a man dx that many years ago and able to still have a family and being a ALL survivor!  Truly amazing........

  • Re: ALL survivors
    Djlawman Registered Users
    Currently Being Moderated

    Sam (dx 1/2004 with HR pre-B ALL at age 15) is now 3 years off treatment.  Just finished his junior year in college, and will be a senior in the fall.  He made Dean's list again, which made us very proud, and continued to ease our concerns after the 3 1/2 years of cognitive haze from the chemo regimen.  Has a checkup today, as a matter of fact.

    • Re: ALL survivors
      SMS216 Registered Users
      Currently Being Moderated

      Thank you for sharing these wonderful stories. I get teary reading each one. Each story is a reminder that my daughter has a full, promising future ahead of her! Thank you all for taking the time to post.

      (Dx Pre-B ALL on 6/10/08, 80 more days til OT)!

       

      Sara

       

      www.robinsinclair.tumblr.com

  • Re: ALL survivors
    annie.zz Registered Users
    Currently Being Moderated

    Thanks Ann, for bumping this up.

     

    Ok, I'll add a few too!

     

    At my daughter's hospital there's a lovely, bright, articulate young woman who is the teacher there who had leukemia when she was a young teen.  She is 10 years OT for (I think, ALL but maybe AML?)

     

    A few lymphoma stories, since that's what I've been hearing w/ DD's diagnosis.

     

    A coworker's son was diagnosed with NHL when he was 18.  He just celebrated his 10th year in remission.  He missed a year of college, but he finished a graduate program in music and is now a classical musician.

     

    Another colleague's daughter was diagnosed with NHL when she was 13.  She's been cancer free and without any issues for 15 years now.

  • Re: ALL survivors
    mikeysmom Registered Users
    Currently Being Moderated

    My son Michael was diagnosed with ALL on 10/2/05 and finished treatment on 1/17/09.  He is 1 1/2 years off treatment and is a remarkable young man of 12 years old.  As with all parents, you never get the fear totally out of your mind that your child will relapse but it does get easier as time goes by.  Right now he is a perfectly healthy, happy, 12 year old loving summer and going to camp.

  • Re: ALL survivors
    Djlawman Registered Users
    Currently Being Moderated

    Half_Dome.gif

     

    This is Half Dome in Yosemite.  ...........  So, you are all wondering, what does Half Dome have to do with ALL survivors?

     

    Well, last week my ALL survivor son, Sam, climbed Half Dome while we were out in Yosemite!  4800 ft. + elevation change.  9 hour hike (to get up and down).  3+ years OT now.

     

    I don't have his pictures yet, so I don't have any of him there.

  • Re: ALL survivors
    leann's_mom Registered Users
    Currently Being Moderated

    Thanks so much for this thread! It definitely gives hope to those of just starting this journey!

  • Re: ALL survivors
    Fontenrose Registered Users
    Currently Being Moderated

    for inspiration!

    • Re: ALL survivors
      philip'smom Registered Users
      Currently Being Moderated

      Very Awesome about Sam!!!

       

      While training with Team in Training, I met a 16 yr old girl who was diagnosed with ALL when she was 7months old....she is now training to complete a Half-Marathon in December

  • Re: ALL survivors
    ChzDad Registered Users
    Currently Being Moderated

    Thought I'd share an article on a paper I was reading last week while waiting at clinic......

     

    http://med.stanford.edu/ism/2010/september/vinh-0927.html

    • Re: ALL survivors
      SweetPotato Registered Users
      Currently Being Moderated

      What a wonderful article. Thank you.

    • Re: ALL survivors
      tburkhardt Registered Users
      Currently Being Moderated

      Love it.

    • Re: ALL survivors
      Peter'sMum Registered Users
      Currently Being Moderated

      Very cool! Thanks for that.

    • Re: ALL survivors
      tcell_all Registered Users
      Currently Being Moderated

      Fantastic!  Now, that's what I call a rich and full life

    • Re: ALL survivors
      tcell_all Registered Users
      Currently Being Moderated
      • Re: ALL survivors
        Eleanora Registered Users
        Currently Being Moderated

        lemonade stand 2011.jpgMary Kate (and twin sister Sarah) just finished their 8th annual Hot Chocolate, Lemonade and Brownie Stand benfitting the LLS.  We did her first one in 2004 when she finished treatment. She turns 16 in about two weeks. Our total this year was $2252!! The last several years, we have made at least $2000.  There is a sweet Dentist who lives on our street, and he came to us about the sixth year and told us he had watched us do the stand every year and thought it was so sweet and grassroots. He loved how my 4 children run the stand.  His dad passed away from Non-Hodgkins and he wanted to match what we made that year. He brought us a check for $1000, and has done so EVERY year since.   Mary Kate said she wants to keep doing it until no one is dying from this any more.  I just wanted to share with you!

        • Re: ALL survivors
          EvansMumma Registered Users
          Currently Being Moderated

          Thank you, it's absolutely inspiring and uplifting.

        • Re: ALL survivors
          Elke'smom Registered Users
          Currently Being Moderated

          Thanks so much for sharing that, and kudos to your wonderful children! 

           

          This is the kind of stuff I LOVE to read on these bds. Helps everyone keep going, no matter where in their journey they are!

           

          Ann

        • Re: ALL survivors
          Gabbiesmom Registered Users
          Currently Being Moderated

          FANTASTIC!!  How cool is that!!

           

          Thank you for sharing!

        • Re: ALL survivors
          SweetPotato Registered Users
          Currently Being Moderated

          I've read about Mary-Kate and your family over the past 4 years but have never seen a picture of your lovely children before!  What a great shot and wonderful story!

           

          My daughter, Isabel, has been in remission for 4 years and 4 months and off treatment for ALL a little over 2 years now.  She is doing wonderfully!  I worry about late cognitive effects but so far she is one of the brightest and happiest kids in her class (she's 9).

          • Re: ALL survivors
            Eleanora Registered Users
            Currently Being Moderated

            Mk night on beach.jpg

            The top picture is from last year at Orange beach, Alabama. The bottom picture is from about 2005; she was one year off treatment, and we went back to Kissimee for vacation and worked at Give Kids the world. My kids loved it so much, we played on the  beach and worked in the ice cream shop one night, and served breakfast in the restaurant the next day. It was wonderful.  I still come to this board and read regularly. This was my second family for the duration of her treatment, and I want to offer encouragement and advice whenever I can.  I feel like you are all extended family. You are all such great parents and I pray for you.  Mary Kate's website is www.caringbridge.org/tx/marykatemary kate angel.JPG

  • Re: ALL survivors
    Fontenrose Registered Users
    Currently Being Moderated

    bump

  • Re: ALL survivors
    ChzDad Registered Users
    Currently Being Moderated

    With Donavynn, Fuller and Peter relapsing, I am devastated to say the least. Thought I'd bring up this thread started in the old board (Braveheart's Mom) and re-posted by Fontenrose. My youngest son who is now attending the same prep school Chz did brought home the school paper last week. In it was an article about a sophomore who is helping our local chapter of MAW in their annual fund raising campaign. It goes on to say that she is just paying it forward as she was the recipient of a wish in 1999 due to a serious medical condition. I met this cute little girl last year when she was accepted in this prestigious HS - she sang impromptu in our parents meeting and she just blew me away. She has the voice and she was only 14.

     

    Little did I know that she herself is a cancer survivor. Inquiring minds got me to google her name. This is what I saw....

     

    http://vimeo.com/2133916

     

    FIGHT ON!

  • Re: ALL survivors
    Toddmtedder Registered Users
    Currently Being Moderated

    I'm a 31 year survivor of ALL.  I was diagnosed in June of 1980.  For years, even after my remission, I tried to forget about my battle with ALL.  The last few years, I've learned to embrace it and know inside that I'm different from 95% of the folks I'll meet.  I'm here to tell you that there is life after ALL.

    • Re: ALL survivors
      burmang Registered Users
      Currently Being Moderated

      This was last bumped back in June. Back when I had no idea what lay in store. Back "before." I searched the boards for the word "inspiration" and was so happy to find this thread. Some days I bog myself down in horror stories, but most days I just want to read about the good.

       

      So bump!

       

      Elsa's Observations

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