Is there a community for moms of kids with leukaemia?

Sivoi - posted on 03/17/2009

Hi there i read the story, it's touch my heart about happen, well My understanding, you believe in God so as me. So  God creat us as a Human but us Human can recreate meanning do something, or put in action. so if you need my help I will help you that my mission . I got 4 kids all girls they all my everythings. Im so sorry about your daughter. but believe youself you want to be with her every single day. my profile have my number feel free to call. or (808) 671-3787

Sivoi tofilau

Hawaii

Trudy - posted on 03/16/2009

Hi there,

I have just had a girlfriend refer me to this site.  And my heart goes out to you all. 

My daughter was diagnosed with ALL in May 2005 (2 weeks after her 2nd birthday).  She went off her food, wanted to sleep all day, stopped enjoying her beloved swimming lessons & generally lost her zest for life.

After many visits to the doctor, her chiropractor referred her for blood tests.  Prior to this, she had an x-ray on her leg to check for fractures (she wasn't walking properly).  This showed a transparent piece of bone above her knee which can be an indicator of leukaemia.  Blood test came back negative.  A month later, we had a repeat blood done (at 7pm).  I had a call at midnight from the pathology who advised us to take her to the emergency dept.  They told me at 4am that she had leukaemia.

Everything was a blur after that.  She had blasts in her spinal fluid & is still having lumbar punctures to treat that.  We're down to a handful of treatments now before she finishes.  Funny enough, her last dose of chemo is due to be given on my birthday (I couldn't ask for a better birthday present!!!)  They'll then do another bone marrow before taking out her port.  So by August this year, we should be completely finished.

I've had 2 other kids since Ashley so life with 3 kids under 4 is pretty manic.  Throw in hospital treatments & we certainly don't have much time sitting idle.

Anyway, I just wanted to touch base & let you know that there are still people out there who haven't told their story yet.  And that it's nice to know that we're not alone :-)

Stay positive

x

Shera - posted on 12/31/2008

It is so true. Life if so fragile. I felt the same way when lexi got sick I had friends all around me and it was like they just stood there waiting for me to poor out my heart as if that would change anything.. I had already shared my feelings.. the rest was for me to work with and only me. It's nice to have them at arms length. Your right. And the only people that really know your feelings are those who have gone through it. And as they also say "only time will tell and ease the pain" We were with some good friends over Christmas who lost a son over 11 years ago and They do still have sorrow and pain from that lost it is clear to see. How can you not. If you didn't you wouldn't be human or much less a mother. But they do find joy in the life they still have. We were watching home video's of them before he passed (died suddenly hit by a car) and they just kept talking about him, still with so much love. Take your time!

It's kind of nice to I think to tell you story in forums just like this. There is a lot of comfort in other peoples thoughts. At least that is what I have found. Please know.. We don't take life for granted. :)

Julie - posted on 12/31/2008

Hiya Shera i do have a really good family who have been through this with me who are so caring, it makes me upset because i know they want to help me through it but they cant.with all my family and friends around me i still feel so alone and i try to be happy when im around them because i dont want them to be sad aswell.i think in time some of my pain will ease but to have a good old laugh like i use to i think ive lost it all.I dont think life would ever be the same again not when there should be 4 of us and not just 3.i love my family very much.i think everyone takes life for granted sometimes not knowing whats round the corner when something like this happends to one of your own its the same saying' what other people say this only happen's to other people it just goes to show it can happen anytime in your life.

Shera - posted on 12/31/2008

Wow. (Lyndee), I didn't realize it wouldn't be that noticeable in the blood count. Maybe it was just that my daughters had gotten to the point of taking over her blood that they were able to see it. The Oncologist said that when they did her bone marrow they had to try 2 times cause the leukemia was so think in her marrow. She experience the same thing with her body in September (she was diagn. in Dec) She just cried and cried and wouldn't walk anywhere just scooted on the floor. after 3 days I took her in and the doctor did x-rays and said they thought she had a virus in her joints. And that if she didn't start walking again in a few days they would do more test.. Well she did and seemed fine. The end of November she started doing it again, we passed it as a virus, until to many things started to go wrong- a whole bunch of common things all at once. Her tummy started to blood- well she hadn't pooped for a couple days. so we figured constipated.. She looked pale.. we figured because it was Now 1st of Dec. Her gums were bleeding when we would brush her teeth.. she just got her 2 year moalers but that was over two weeks and I couldn't figure out why they were still bleeding. Then for 3 days all she wanted to do was sleep or take a bath. -The answers all came when the doctor told us she has leukemia. They also said if they would have tested her blood in Sept. They probably wouldn't have caught the cancer then. It must have been so heavy in her body by the time we took her in.

Julie Thank you for talking and answering our questions. The situation and outcomes are so different, I appreciate you telling us your story. It sounds like from Diane's note that you do have great support. I do hope that stays. At clinic and in the hospitals you meet all these kids in every age range fighting some form of Cancer. And you see how it becomes our lives and we talk about it with them like it is normal- because it is our normal, an uncomfortable, un-wanted normal, that is our lives. And we meet some that we celebrate recovery with, or cry at the loss of the fight with another. The emotions never become "normal". My daughter is doing good, But I still cry at st. Judes commercials or when I hear about another kid going through the same thing. When I see bald heads and puffy cheeks, Cause I know their pain.
I wonder how many kids loose the fight like your son, before he has a chance to fight. Doctors really need to know They have to look at every option, cause ALL is way to fast to be guessing.

Julie - posted on 12/31/2008

Hi Shera he had his last blood test (from the doctor) befor we new he had it it come back that he had a few white blood cells it just means he his a bit anemic,that was on october 31st.so even from then they still wernt conserned. joshua was playing up stairs with tom when i seen the little spots he was fine.from me telling him to get his coat on we going to the hospital he could hardley walk to the car.When i had taking him to the hospital they tryed to get blood from his arm in the end they took it from his foot. when he got transfered to another hospital you could see he was geting weak it was all going so fast how he was from a couple of hours ago.im not sure how many white or red cells he had.we havnt had the coroners report we have to wait until after the new year.Shera i realy dont mine you asking me any questions it helps me.

Diane - posted on 12/31/2008

Hi,I am Diane and am Julie's sister in law and I can't possibly know what all of you are going through because luckily I have 4 healthy children, but as an Aunty of Joshua, I know how I and all of our family feel. We don't understand that in this day and age children (and adults) are passing away so quickly from this disease and how the signs are not acted upon quicker. We are all still grieving for our Josh and we will always be thinking of him. I think the important thing is for everyone to support each other and be there for each other which I hope is what we are doing as a family for Julie, Tony and Thomas. So thank you so much for talking about your experiences and educating people like myself about leukaemia.

Lyndeen - posted on 12/31/2008

Actually I've checked out the other sites for Mom's of kids with cancer and there do seem to be some mom's of leukaemia kids so maybe we should support their communities

Lyndeen - posted on 12/31/2008

Hi ladies. Thanks for the response. I think that we should start a community for moms of kids with leukaemia as although it's classed with cancer it's got a world of problems of its own. Shera where are you guys from? Would love to chat more. Julie my heart really goes out to you. My daughter had been sick with colds and flu for a while and had complained of "growing pains" and she was also subjected to so many blood tests, MRI's and CAT scans and the paed even told me that she was just naughty (she's 10). Then I was asked if I ever beat her, my husband even started thinking that maybe the paed was right. After 6 weeks of tests, etc I took her to another hospital and from there a paed did a bone marrow biopsy which showed 95% leukaemia and not a single blast in her blood.

Shera - posted on 12/30/2008

beading gum's, cause they don't have any platelets to clot the blood. That's a big sign. achy beyond comparison. My daughter would sleep for 4 hours wake up didn't want to walk anywhere complained of the pain then wanted a bath, an then would go back to bed for another 4 hours- that same thing over and over for abut 2 days. Really it's not that common. The odds are rare. Thanks for you kind words.

Stacey - posted on 12/30/2008

I am so sorry for all of you, I have a 13 month old, What are some of the symptoms to look out for, so I know to have her checked right away, again my heart goes out to all of you,

Shera - posted on 12/30/2008

I am sorry to hear that. The fact that it was sudden has to be hard. No time to prepare. Julie God bless you and your family in your healing. Thank you for sharing your story with me (us) When was his last blood draw? how long did it take them to look at the blood. My daughters peds doctor that caught hers said (and you learn more about it every time they draw bloods during treatment.) leukemia means white blood and in the blood they count the good blood cells over the bad and a healthy person would have thousands of good blood cells. My daughter had 3-that all hit in about week of time. It was bad. I just wondered if your dear son was that close to it taking over his body, when was his blood test done? I am sorry so many question- I just wondering

Julie - posted on 12/30/2008

yes he has a younger brother Thomas he has just turned 10yrs his birthday is Nov 30th.we have all taking it bad. Thomas misses him so much because he played up stairs with him carrying on or watching tv. they were really close.every time me and his dad went to bed we had to carry tom in his own bed. so on christmas day was kinda quiet tryed to make the best of it for tom.You dont expect to visit the cemetary on christmas day.im so glad your little girl made it through she is very brave a little fighter. i hope everything goes well for you and your family

Shera - posted on 12/30/2008

ALL Leukaemia. That is what my daughter has. I understand to an extent. I can't believe they didn't catch a glimpse of it with that many blood test. My daughter did the same thing. We called the doct or Friday and they said she was probably getting over a bad cold and if she was still not doing well on Monday bring her in. The doctor had just done her 2 year check up two weeks prior- and all of a sudden She wasn't doing good at all. I called the doctor at 8 they got us in at noon by 2 they gave us the results told us that it was so serious that we couldn't go home, but straight to the hospital. She was check in by 4 getting blood transfusions by 6 and chemo the next morning by 8. It was a lot to take in. The doctor looked at us and said if we waited even 1 day longer we would have lost her. I cry just thinking about it, I know it has to be so hard. I hope you have a place of peace! And just know Chemo is no fun. It would have been brutal on his body They say the older they are the harder it feels. My daughter was miserable, but she was 2. She didn't know that her body was suppose to hurt.. I am blown away at how quickly the cancer hits. Did he have siblings?

Julie - posted on 12/30/2008

Hiya Shera it was the common one if children get leukaemia..he come home from school one day saying his knees was hurting because he was running in P.E.when he was still complaining a week later we went to the doctors he just give him tablets saying it was growing pains he had blood tests everyweek he had xrays from his knees to his hips then on the monday 3rd nov he had little purple pin head spots so i took him to the hospital thinking it could be menengitis. the next day they give us the biggest shock of our life's in all the 4 weeks one min he was running about with his brother the next he was crying couldnt hardley walk saying his legs were hurting then his foot then his wrist thats why he was having blood tests.its so very hard going through christmas without him we miss him so much.

Shera - posted on 12/30/2008

Oh julie. I am so sorry. The doctors told us that if we waited even 1 more day my daughter would have died. It took just took over her body so fast. What kind did they diagose him with? My heart goes out to you.

Julie - posted on 12/30/2008

my 11yrs son died of leukaemia we got told he had it on 4th november at about 10a.m and at 8.10pm on 5th November 08 he died

Shera - posted on 12/30/2008

There is a group under speacial needs kids -

Moms with a child with Cancer

Shera - posted on 12/30/2008

Hi. My daughter has been fighting Leukaemia for two years now. We are in our last two month stretch to be chemo free. So far her fight has been good. bumpy at first buy realitively good. I would love to talk with other mom's about this. I didn't see a community- Let's create one! Would you like to?