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Leukemia 101

March 14, 2012

THIS POST IS STICKY SCROLL DOWN TO SEE THE NEWEST POSTS!!!

 

My site stats are up.

That means another family has a child with leukemia. And it pisses me off.  BUT… i am also glad tht I am there, or was there so that it might be easier for them.

To hear, ” She has blasts in her blood.”  ugh.. what does that mean…

“You’ll need to admit her immediately.”  ugh, do they mean now at this moment.

Then to hear

“She can go back to school if you’re comfortable with that.”

Does this make sense?  NO.  None of it makes sense because they’ve just told you that your child has cancer.  WHAT!!!!   Not possible.

So we need Leukemia 101 for all the parents of new lukes out there.  We need a mentoring program where we can pair newly diagnosed families up with old timers like me.

A person, not just a message board where they can connect and ask the questions that need to be asked.  Do I give the ara-c before or after breakfast?  Not that we  could answer every question….. but it is sure nice to have someone to ask.

Of course it isn’t just the site stats that have me up in arms about leukemia again, it is a daughter of a family member of a Facebook friend.

That does sound convoluted. But basically what it means to you is that another child has been diagnosed with cancer. Leukemia, the 2 year treatment, cancer.  The one with the 95% survival rate at 5 years after diagnosis.  The one where the parents freak out.  Oh, wait, that is all cancer isn’t it.

So, if you’re a current or former cancer parent POST IN THE COMMENTS the number one thing that you wish that someone had told you!!!  Post it now.  Stop reading and go post.

Surely you cancer parents weren’t this bad at following directions.  ; )

Welcome to Leukemia 101!

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27 Comments leave one →
  1. December 30, 2015 6:56 am

    Hi there,
    Thanks a lot for the blog, for the information, for all the courage and concerns you have shared. I’m a mother from Istanbul, and my daughter has been diagnosed with ALL Pre B, high risk on 16 June 2015. It’s tough. Mostly we are up and happy but lately my husband and I cannot help from getting lost in the darkness of our soul. Your blog, and the few others I could find is a guide to us, a help to us, a friend we met in the dark tunnel… I hope the best for you and all the kids fighting leukemia or any other type of cancer. Happy new year!

    • January 30, 2016 9:36 pm

      So sorry for your journey.. and so grateful that I wrote as much down as I did.

      Good luck with the process. Be an advocate.

  2. July 19, 2014 4:24 pm

    Hi there, our 6 1/2 year old daughter was just diagnosed with Pre B ALL, on July 4, 2014. So we are in this for the long haul. Her cytogenetics showed no favorable genetics, nor unfavorable genetics. So for now we are average risk. Your blog has been the most informative I have found. I agree that there needs to be an ALL 101 book written. I keep voting for my husband to do it because he is an awesome writer – at least that is what the readers of our blog say. But I guess we don’t know enough to write it yet. Thank you for keeping your blog up and current!

  3. Rachel aka Quinn's mama permalink
    November 17, 2012 1:39 am

    Hi there! Long time no talk. Just had two more girls in my acquaintance diagnosed. I gave the moms your blog info. You did such a better job documenting everything than we did. Just wanted to say hi. All is good here. Laying low, too afraid to poke the gods. Send an email sometime.

    How’s Isa?

    Quinn’s mama

  4. August 11, 2012 12:09 am

    I just found your blog through google. Thank You so much, I’m loving reading through your old posts, and can relate to so many of your feelings. My daughter was diagnosed March 8, 2012 and we are half way through interim maintenance. I wish I could have been told more about managing side effects, and what to look for in my little one who has trouble telling me what’s wrong.

    • Jeni Herrera permalink
      August 30, 2012 8:19 am

      Taeen..there is a group I belong to on FB..ALL Mom’s and Kids with ALL..friend me on FB Jenn Hooper-Herrera and I’ll send you an invite, and anyone else that wants one..blessings! We are in the hospital again as counts have been low/fever/needed transfusion, We just finished Delayed Intensification and it was hard..he lost all his hair and has been hospitilized twice, but we MAY go home today I hope! He also has a blog on FB it is under ALLways Amazing Miguelangel.

  5. May 5, 2012 5:17 am

    P.s. My one thing: Don’t be afraid to speak up. My daughter’s ruptured appendix went undiagnosed through most of consolidation. We knew our daughter, and intuitively knew something else was going on. Listen to that voice and use it. You are the best advocate for your child, and it’s one of your most important jobs during treatment.

  6. May 4, 2012 3:41 pm

    Hello,
    I really hate these introductions, but my daughter is battling the same disease. She was diagnosed one week before her 5th birthday. This was complicated by a ruptured appendix, and has been quite a battle, but she’s a fighter! I’d like to invite you to the blog I started just a couple of weeks ago, after writing on a Caring Bridge blog for 6 months: http://www.all-ofus.com
    I wish you WELL through this journey, in every way … I will follow your progress and send prayers your way.

  7. Anonymous permalink
    March 28, 2012 9:28 pm

    We are now in delayed intensification, two weeks in, and in the high risk treatment because of the mrd at day 29. My little boy, Raoul, is in good spirit and as never totally lost his hair. Despite the fact that this is possible and that the doctor is telling me not to worry, it is always on my mind and the other hospital parents are always asking us why. Every child is different.

    Ask question, we are always asking question. Learn to be creative and to adapt. We are sometimes going at the park after dark with flashlight to avoid crowd and he loves it. And for the steroid issue, I would have like to know that he would stop to walk and asked brocoli at night. I was not prepare for all the nights at the hospital, but know that you have the rights to tell a nurse to stop and to see a supervisor. Read the label and your child medecine and check twice even in the middle of the night. Be aware.

    I would like to say that your blog as helped me get throught the day, more than once. You were what I was searching for when I found you. Sorry for my english, i’m french. But in one word, merci, du fond de mon coeur.
    Mylene

    • March 28, 2012 9:39 pm

      Mylene says something very important…. YOU HAVE THE RIGHT TO TELL THE NURSE TO STOP! AT ANY POINT FOR ANY REASON.

      Mylene: you’re welcome. I am just sorry that we had to meet through cancer. Yes, Isa’s MRD was too high as well, so went through all that you’re about to. The Consolidation I thought was horrible. The second DI was bad too. You will make it through. And do some research about ozone therapy. It could benefit Raoul

  8. March 26, 2012 11:26 am

    Oh! There are so many things I wish I had been told. The fact that 6MP should not be given with food, especially dairy (I found that our through the LLS discussion boards). that we didn’t have to put my son through trying to be pinned down with the mask for radiation without sedation when they do sedate young kids as a matter of routine (they just wanted to see of he could cope!!!!) That Maintenance is not easier…just different and cancer parents are more used to the shock so have learned coping mechanisms. That once your child is done with treatment, you will hit the wall so hard it knocks as much stuffing out of you as the diagnosis did so find ways to manage stress early on. That your child does return to ‘normal’ after treatment but late effects mean PT twice a week and some emotional issues at school with not being able to run (no longer having cancer, my son is laughed at for being slow). And finally…how quickly you forget so much after treatment and can’t list all the things you thought when you were going through it…thank goodness for the blog to remind me!

    I love that you are reaching out to others. It’s funny, I just posted about getting my butt into gear again and being more active in the cancer world. xxxx

    Katy from Superman Sammy (can’t post with the link for some reason)

    • March 27, 2012 11:57 pm

      You know the funny thing is that I don’t really feel called to be “in the cancer world” I am not a fundraiser type. Or a visit the hospital type. It is all too close.

      We don’t have any late effects except for some enlargement of her spleen. Although she is still slow, but we homeschool so I rarely see her running with other kids. We don’t have any PT. BUT, I wonder sometimes about memory. Then her sister reminds me that kids forget stuff easily. And I stop worrying.

      Yes, I was told via chat with another cancer mom that they woke their daughter up to give her the 6MP. I actually started doing that. It made for a less restful night but I knew that she was getting it. Oh and it is NO DAIRY NO ORANGE JUICE for the 6 MP.

      Oh and we still use LMX cream for blood draws. WE put it on when we get to the parking garage and cover with a press and seal or one of those tegaderm things.

      Vist Katy above at >>>>>> http://supermansammyz.blogspot.com/

  9. Jeni Herrera permalink
    March 21, 2012 2:50 pm

    THANK YOU! My 21 month old only son was just diagnosed with ALL, after THREE MONTHS of them not knowing what was wrong with him, high fevers and severe stomach pain every day..I kept begging them to figure it out as I was 8 months pregnant when it started, he was diagnosed 2 weeks after his sister was born, she was only home with us 5 days before we ALL went back into the hospital with him…I’m breastfeeding so I can’t leave her. Tomorrow is chemo treatment number 5..he is swollen and starving from the steroids, can’t get up anymore as he’s packed on so much water weight, and sits in his swing most days, just fed up and depressed, not our little boy anymore and it breaks my heart. Thanks for posting what we are in for..we are going to fight, but it is terrible to know he’ll just never be the same…

    • Anonymous permalink
      June 14, 2012 8:00 am

      It is a difficult fight for all those involved. He may not look like your little boy anymore all swollen but he still is and needs all the support and love in the world you can give. My little boy went through the same thing and I thought the same thoughts. He will bounce back, the steroid regimen will slow down and he will learn how to handle them better. It is a long road but it passes quicker than you think. All I could think of when they diagnosed my little one was three years holy cow and like you I was pregnant as well. Everything was even more of an emotional roller coaster. It took the docs 4 1/2 months to diagnosis and it got scary. He is doing good now and we are now awaiting final results from his last bone marrow three and a half years after his diagnosis. As I am hoping for positive results to come from the test, I also wish your little boy and all of the other children with cancer a fast remission and recovery. Children are a blessing and very adaptable as long as they have the love and support needed, they find a way to cope with anything else as long as they see you being strong. Take care and good luck.

    • Jillian permalink
      July 19, 2012 12:35 am

      My son, 19 months, was just diagnosed with ALL as well. It’s supposedly like 3 out of tens of thousands of cases known by this particular researcher… but I too had the exact same type of Leukemia my son has. B-cell ALL leukemia. I was about 2 1/2 when my diagnosis came about. The bit of encouragement that I can give you is that your son is young and while it is heart-wrenching to watch their little personalities change so much… he will not remember this experience. I have lived a very normal life, except that I knew I had leukemia and that I had to get labs done once a year. I always was paranoid when I got too many bruises, but that was a rare thought. My little man has turned into a roid-raging, lethargic (but so much more cuddly!), full-faced guy. But things will turn around. I’m due any day now, a little girl as well. It sounds like our lives are running pretty parallel. I’m wondering how to juggle breastfeeding also. You’ll do wonderfully though. And with breastfeeding you’re often tied to your house quite a bit anyways… so with an immuno-suppressed little man, it will be easier on everyone to take these next few months and just try to settle in and enjoy your time at home with your new baby and your fighter of a son. That’s my plan anyways. I hope you find peace and strength. Your little boy will be back. These meds are saving him, but it is just a phase of yucky side effects to deal with. Sending lots of warm thoughts your way.

      • Jeni Herrera permalink
        July 20, 2012 6:13 am

        Jillian did you have your baby yet? Our baby girl is 5 1/2 months now..still breastfed but she grew up in the hospital with us as she was born 3 weeks before his DX and we were in hospital 1 mo after with him AND her (though she was healthy!) Please feel free to befriend me on FB (Jenn Hooper-Herrera) would love to stay in touch!

  10. Leigh Wood permalink
    March 17, 2012 9:49 pm

    I wish the doctors had been more honest with us about side effects. My daughter was 12 months old at diagnosis. She finished treatment 1/15/12 and has some motor and language delays. When kids are diagnosed at such a young age they should probably receive more attention to their motor and language development to help prevent problems.
    I also wish I had known about LLS’s First Connection Program. I am a volunteer for them now. The program matches up newly diagnosed patients and their caregivers with someone who has been through the cancer journey.

    • March 17, 2012 9:58 pm

      I never heard of the LLS First Connection Program. Thanks for posting.

    • Jeni Herrera permalink
      March 21, 2012 2:51 pm

      can you give me more info on this LLS’s First Connection Program? We are newly diagnosed..21 month old son has ALL would love someone with experience!

  11. March 16, 2012 8:46 am

    The number one thing I wish someone had told me was that cancer wouldn’t take the “child I knew” away forever. Daniel was so grumpy and depressed (as a 3 year old!) when he was in the beginning of treatment. He didn’t want to play and the spark he always had seemed to be gone and I feared it would never come back… but it did. Once those first heavy medicines began to wear off, and he wasn’t on steroids as long, he began to feel and act more like himself – not to say that he or the rest of us for that matter aren’t grumpy :-). Also, maintenance seems so far off in the beginning, but you do get there and life feels so much more normal for everyone once you get there. We’re still there and soon we’ll be learning how to live without medicines and without a child in active treatment. Take it a day at a time and cherish each new day, and when days are bad, know that each morning you start afresh. And its okay to cry and laugh and yell and say nothing at all. Know there are families who would LOVE to talk with you and share their stories, and share their empathy and their hope through the world of childhood leukemia.

    • March 17, 2012 8:51 pm

      That is absolutely wonderful. Thank you Lisa!

    • Jeni Herrera permalink
      March 21, 2012 2:54 pm

      Lisa, this is how I feel right now..where is my sweet smart 21 month old that loves to play? He sits in his swing all day sucking on a bottle (regression from a sippy cup). He won’t play, follows us constantly and has crying jags where we have no idea what he wants or why. We are in the first 3 weeks of treatment and I’m wondering how we are going to get through all this!

      • March 21, 2012 11:37 pm

        Jeni, you get through it ONE DAY AT A TIME. Keep breathing. Get some Bach Rescue Remedy. Take care of yourself and your new baby. You can’t let your health go one bit. It will be hard. The first six months are the hardest. Isa’s protocol was STANDARD-HIGH RISK. We went through two rounds of Consolidation and two rounds of Delayed Intensification. Hopefully you won’t have to do that.

        Keep reading, Pay attention to your child and if you feel that something isn’t right, it probably isn’t

      • Jillian permalink
        July 19, 2012 12:49 am

        Jeni, I don’t know you but I want to give you a big hug right now. I empathize completely. Our son has stopped giving us kisses, laughs and smiles are few and far between, he’s food obsessed from the steroids… but as I tried to share in another reply… he won’t remember any of this and the side effects will go away as the drugs change and he goes into maintenance. I know from experience – ALL and same age too. It’s so hard for the parents, but thankfully your little man will come back around and he’ll be none the wiser as he gets older. I wish the Drs would have told me that about 50% of kids have personality changes and drastic mood swings while on the steroids. They just kept offering morphine saying he was probably in pain. I know my child… he wasn’t in pain… he was just roid raging and pissed at being stuck in a hospital being poked and prodded all day long. We’re back to a bottle to try and curb some of the midnight (and 4am) hunger cravings. The sucking lulls him back to sleep as well. Whatever works! Life will become more normal and he’ll be back to his usual self soon enough. I pray that for my son as well!

        • Jeni Herrera permalink
          July 20, 2012 6:09 am

          Jillian..thank you for the hug..I needed that! We are currently in our 2 week of Delayed Intens. and just came of “Steroid week” yesterday. Wasn’t too bad this time around. Still had mood swings..but not as bad..I was hoping he’d eat a lot as he’s lost a lot of weight..down to 20 lbs and he turned 2 June 18th..but he still isn’t really eating..just sucks down his Pediasures all day..which I guess is a blessing! He is doing very well and we are blessed that things haven’t gotten worse! Are you part of the ALL Moms Facebook group? Are you all in Maint. now? We start in Nov if all goes well.

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