The Leukemia & Lymphoma Society - Fighting Blood Cancers
77 Replies Latest reply: Apr 4, 2012 12:32 AM by Ingridktw RSS

First Post. my son has pre-b all

VGRANDE Registered Users
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My son Enzo is 3 years and 4 months old. we found out on June 27th 2011 he has Luukemia so scared..

  • Re: First Post. my son has pre-b all
    Fontenrose Registered Users
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    You have come to the right place. My son was diagnosed with pre-B ALL exactly three years ago. He is doing well in the last few months of treatment. In fact, we go to the clinic today for his monthly visit.

     

    I was pretty much in shock for the first month. He was in hospital during this long weekend, waiting for the port to be put in his chest.

  • Re: First Post. my son has pre-b all
    MomofNicholas Registered Users
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    Yes that first week is so frightening.  My son was about 3.5 years old when diagnosed and we spent Thanksgiving in the hospital. We are 7 months in and he's tolerating treatment very well!  So sorry you have to be here but I am sure you will find comfort here. -Theresa

  • Re: First Post. my son has pre-b all
    tlblmom Registered Users
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    Hi,

    I'm so sorry, I know your fear. It is unlike anything I've ever experienced, but I know that you will find the strength for your son. There is so much hope these days. The road is long but you can do this. You can come here to vent. It makes me feel less lonely. We aren't doctors, we're just other parents, but the information is still very valuable. We ask each other questions like "did you ever see....?" "what did you do when....?" and nothing is silly or embarassing - I remember seeing a post where a worried mom vividly described her child's symptoms including the poop floating in the potty and then apologized for giving "too much information" but I thought, that's good to know! Who else cares about that sort of thing? We do.

    Your family is in  my prayers

  • Re: First Post. my son has pre-b all
    mkauffman24 Registered Users
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    Welcome to the group.  I am very very sorry that you have to be here though.  Do you know any specifics yet?  How is he doing?  This whole process is definitely very overwhelming and scary, but believe it or not, parts of it do get easier.  We are almost seven months in, and I still remember the beginning like it was yesterday, we had no idea what to expect or what life would be like.  We are hanging in there though.  Best of luck to your son and your family.  Please come here anytime !

     

    Melanie

    Mom to Daniel 3 (dx pre B ALL 12/15/10) and Dylan 6

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

  • Re: First Post. my son has pre-b all
    Gabbiesmom Registered Users
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    Being scared sounds about right. Shocked. It ishard to wrap my brain around it yet sometimes and we're 10 months into treatment. We're "that family" the one with the cancer kid.

     

    You found a great place here, we all totally get it. I promise you'll wrap your brain around things...it is astounding what a person can get used to.  Hang on!!  and welcome.

  • Re: First Post. my son has pre-b all
    sweetpeas_mom Registered Users
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    June 30th 2009 was the first visit our daughter had with the hematology/oncology pediatricians.  It took about a week before we knew what she had (t-cell leukemia). Yes, we were scared and shocked.  It is now two years later.  She is still getting treatment, but is doing fine as part of the maintainance phase.  We hope we can help you and your son with info, support, and our stories of getting our kids through it.~  Cheryl

  • Re: First Post. my son has pre-b all
    annie.zz Registered Users
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    I'm so sorry that your family is going through this, but you have found a great place for information and support.  It's scary, but there are lots of other parents and caregivers here who are on the same road with you, and many who are ahead of you on this journey to keep you going.  There are a few good threads with information for parents new to this, if you go back a page or two.

  • Re: First Post. my son has pre-b all
    mnbowen Registered Users
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    Bridget was 3years and 4 months when diagnosed Pre B ALL. Now she is 5yrs old and we are 4 months from finishing treatment. She is doing well. The beginning is rough, but things will get better. Come to these boards often and ask questions. Here you will find much support. I learned more about the protocols and blood counts here on this board than at the clinic. We have great doc and nurses, but for some reason the many questions would come to me at night or after we left the clinic.

     

    My prayers for your son and your family.

     

    Find support in your family and friends.  When Bridget was first diagnosed, a friend said to me " This is your time to Lean, so lean hard"

     

    Nancy

  • Re: First Post. my son has pre-b all
    suzziep Registered Users
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    I am sad to say welcome, but you have found an amazing board. My son was  DX  at 4 yrs old with pre-b all as well. He is now 6 and half way through LTM. just try to remember to keep a pen and pad handy and ask ask ask. The dr's don't mind even if you ask the same question 5 times. This is all so hard to take in at the beginning, but it will get alittle easier to handle as time goes on. Just stay strong for your son. In the end of all of this your son will be clean and clear of his luekemia. he will grow to be an amazing man.  this board has helped me through alot of hard times, just reading other parents posts knowing im not alone.  im praying for your son .   sue

  • Re: First Post. my son has pre-b all
    jeriL Registered Users
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    So sorry your son and family are going through this but finding this board can be a big help to you. My son Daniel, 2.5 was diagnosed June 8, 2011 and this board has been an amazing source of information. Just know that you don't have to go through all of this alone.

  • Re: First Post. my son has pre-b all
    briankatyjs Registered Users
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    I am so sorry you are going through this.  Right now, your entire world had been turned upside down and you will be feeling emotions that most parents will never (thankfully) fully understand.  You are not alone and I hope you come to this board regularly as it really helps...and you will find good, supportive friends.  No words will truly calm you now, you will find a way to move into your new normal as time goes on.  I hope and pray you find the support and help you need quickly. 

    Hugs to you adn your family,

    Katy xx

     

    http://supermansammyz.blogspot.com

    (go to the first posts to read about my experience with where you are now on your journey - and link to the other blogs which have helped me understand things as I have gone along)

     

    IMG_0675.JPG  Almost two years into treatment....happy smiles are more normal now - you will get there too

  • Re: First Post. my son has pre-b all
    robbieh Registered Users
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    So sorry you had to find your way to this board.  Receiving a leukemia diagnosis is scary, overwhelming and gut wrenching.  At the beginning there is so much to digest and so many emotions.  You will be amazed at how the blood counts and meds start to make sense and become second nature. 

     

    My daughter was diagnosed with high risk Pre B ALL on 7/30/10 and today other than her extremely short hair you wouldn't know she has any kind of medical condition going on.  We had our really scary moments and minutes that felt like hours; hours that felt like days and times that I wondered if it was worth it to put her through so much.  The first month was particularly rough for us as far as how bad she felt. 

     

    This board is a great resource, but it can also be frightening to read about the complications and side effects.  Just remember that not all kids experience all the side effects and experiences vary greatly from child to child.  Wishing you as easy of a journey as is possible through treatment. 

     

    Robbie and Lauren (almost 13 and in long term maintenance since 4/15/11)

  • Re: First Post. my son has pre-b all
    Gavinsmom Registered Users
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    Welcome...although it breaks my heart to see more parents have to join.  My son Gavin was diagnosed with T-Cell ALL on March 15.  I totally understand the way you are feeling as those initial feelings of fear and shock are still very raw.  People would continually tell me it would get better, and I thought they were crazy (they even made me a little mad).  But once we were able to get through the very trying induction phase and clear the haze of uncertainty, we are adjusting well.  Gavin is doing well and outside of some adjustments to our lifestyle and scheduling, things are relatively normal.  I pray that all our kids have as smooth of a journey as possible.

     

    NIcole

  • Re: First Post. my son has pre-b all
    AmazingGraceMom Registered Users
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    Welcome to the boards. Hope we can help you through this journey.

  • Re: First Post. my son has pre-b all
    mommylion Registered Users
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    I am so sorry you had to join us, but there is so much support and caring here among those who "get it"  that you likely won't find anywhere else.   When our daughter was diagnosed (pre-B ALL) on 5/15/08 we thought the world was ending for the first few days or so, but we got through it and you will too.  There are no silly questions here, so ask away.

  • Re: First Post. my son has pre-b all
    mom2nathan Registered Users
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    My son was also diagnosed with b cell ALL at three.  He was diagnosed on December 28, 2010. The first month was the most difficult for us. My son had a difficult time with the steroids and quit walking.  He is now ready to begin long term maintence and is doing very well.  Best wishes to you and your little man.

  • Re: First Post. my son has pre-b all
    harrisms Registered Users
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    All I can recall from the first week after my daughter's diagnosis (at age 6 in August 2009) is the sheer terror of the word cancer.  And taking a shower in the family shower room at the hospital so I could sob without scaring Emma.  And being completely overwhelmed by the new and terrifying world (nothing brave about this one!) that was now ours.  There's a sharp learning curve in those first few weeks--get someone to help you take in or take notes on all the new information.  And ask about support in your son's hospital and in your local area--there's a world of wonderful support out there that I wish you didn't need, but I'm glad it's there for you.

     

    Suzan

  • Re: First Post. my son has pre-b all
    VGRANDE Registered Users
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    Wow.. Thank you all for making this nightmare a little better. Enzo is in Day 10 at the hospital in Orlando, and day 6 of cimotherophy. Its so hard right now because its not that we can see anything wrong with our little boy ( other then him being week ) its not like a broken leg or arm ..I don't know what to do other then holf him and his mother and try not to cry . I read and read and read some more looking to make sure he has the best odds.I cant lose my son I have to make sure that he is going to be ok. Does anyone recomend a good book to read. Please keep praying for little Enzo and thank you all for your notes I have prayed for all your little girls and boys and we all will have healthy kids again. 

     

    Vinnie

  • Re: First Post. my son has pre-b all
    VGRANDE Registered Users
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    I will be getting those books. Today Enzo went to get his treatment at the hospital.. He screamed but he got it done.. now we wait for July 29... day 29 am I ever going to sleep again.. Please keep praying.

    • Re: First Post. my son has pre-b all
      Techno Registered Users
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      We will. Good luck.

      If you need to talk about this stuff I sent you a private message with my phone number.

    • Re: First Post. my son has pre-b all
      jeriL Registered Users
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      Hi, my son Daniel was diagnosed on June 8 and we just finished induction, with great results. I remember thinking the same thing "when will day 29 get here", and now here we are starting Consolidation, it felt like the longest month of our lives.  Keep reading up on ALL it feels good to not have the Dr. know everything   If you need to talk you can message me.

  • Re: First Post. my son has pre-b all
    VGRANDE Registered Users
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    day 19 .. he seems so tired all the time . this kid was none stop from morning to night. It would take me or his mother 1 hour to get him to sleep and now he puts him self to bed and naps one or two times a day.. also he is cold some times,  he would never even sleep with a cover now he ask for a blanket or cover all the time.. would love feed back . did call dr already and he said his levels were moving up on their own so he is happy with everything.My wife will be bringing him back on friday for clinic...

    • Re: First Post. my son has pre-b all
      mkauffman24 Registered Users
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      Just wanted to say again that I'm sorry that you'll have to be here on this list.  Also wanted to let you know that my son was the exact same way in the beginning.  He was 2 1/2 when diagnosed and would sleep on and off throughout the day.  He would ask to go to bed a lot and pretty much just wanted to lay down.  We figured out that this was due to the steroids.  Our Dr.  said that the steroids can make some kids almost depressed...they get very tired and lethargic.  It does get a lot better tho!  My son also stopped walking during Induction.  During the middle part of front line treatment though he was back to running around and playing like he did before!  He did a total 180 and slept way less and didn't want to nap at all. 

       

      Hopefully after your son gets through this month long steroid pulse his energy level will get much better and he will be running around and playing like before!

       

      I've also heard that the lower hemoglobin our kids have can also make them chilly...not sure if that is true but just a thought!

       

       

      Melanie

      Mom to Daniel 3 (dx 12/15/10 pre B ALL) and Dylan 6

    • Re: First Post. my son has pre-b all
      MomofNicholas Registered Users
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      Just more reassurance.  My son would nap and didn't want to play or laugh and was sometimes cold.  He was 3.5 at diagnosis.  I think it's normal, also.  It is SO HARD to see your child act so unlike themselves.  Heartbreaking.  But it seems typical.  You will get through it.  One. day. at. a. time.

      • Re: First Post. my son has pre-b all
        VGRANDE Registered Users
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        This friday will be day 29.. its has felt like 5 years to get to this day.. please keep Enzo in your prayers .. Thank you all 

        • Re: First Post. my son has pre-b all
          sweetpeas_mom Registered Users
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          Hang in there.  After the first month, there is usually a short time for the docs to review the labs, bone marrow biopsies, etc. for the first chapter.  It can be hard waiting to find out what might happen next.  And it is just really hard to see how your child is affected by the drugs.

           

          It can be useful to write down what you are noticing about what your child is doing.  For some symptoms & side effects, they can help.  But it's really easy to be so distracted that the info you try to pass along to the docs is a little scattered (or maybe that was just me.....)

        • Re: First Post. my son has pre-b all
          kimmeebee Registered Users
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          Praying for you!! It is so hard but it will get better over time. Please keep us posted on his progress.

  • Re: First Post. my son has pre-b all
    jpanos Registered Users
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    Our 2 year old daughter was diagnosed 6/26/11 with pre-b ALL as well.  We finished induction yesterday.  The first two weeks were hell, but this entire last week we have our feet under us strong as ever and watched our little girl gain that beautiful smile back.  Ready for start of consolidation.  Grateful to find this board and share stories - you all are amzing people.

     

     

    Jeff

    • Re: First Post. my son has pre-b all
      burmang Registered Users
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      Just joined up ourselves. Shitty place to be, but glad that we have found a place to meet other parents.

       

      We are on Day 12 of induction, counting down the minutes until Day 29. We are still waiting on our cytogenetics too. Fingers crossed.

       

      How did Enzo do on Day 29?

       

      Best,

      Georgia

       

      Our CaringBridge site

      • Re: First Post. my son has pre-b all
        VGRANDE Registered Users
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        Family and Friends, We want to thank you all once again for all your love and support over the past 5 weeks. Enzo is taking the chemo like a champ and all of you would be so proud of him. We will be going back friday to speak with the doctors about our next phase and he will be getting chemo and a spinal tap, so another big day. We used to look forward to fridays, but not so much anymore! We received the wonderful news that Enzo has passed the induction stage (first 28 days) and can move onto consolidation therapy, this phase will last approximately 8 months and is the most intense once out of all the phases. Unlike most cancers once you are in remission things slow down and a person is usually finishing up treatment however, leukemia works backwards once you are in remission you can start several phases over 3 years to ensure all the leukemia is gone. I found a paragraph online that helped me understand remission and leukemia and just how important all these next phases are for him: When a patient is diagnosed with ALL, he or she may have 100 billion leukemia cells in their body. Induction therapy should destroy at least 99% of these cells, the patient is then in remission. However, that could still leave 100 million leukemia cells in the body. If these cells are not destroyed, they can grow and multiply and cause a relapse of the disease, this is why the next phases are so important. We also wanted to thank everyone who has donated to the Leukemia/lymphoma society walk in October, our two teams have raised over $1500.00 dollars already and we still have over 2 months to raise money for this great cause. WAY TO GO! Please keep the prayers coming and positive thoughts for our little man! All Our Love, Elaine and Vinnie Larissa and Enzo too

        • Re: First Post. my son has pre-b all
          greeney Registered Users
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          There is a great site called "Caringbridge" it's ideally set up so those with serious illness can gain support and keep family & friends up to date with their journey, you may already know about it. We personally didn't have our own caringbridge pages as by the time I found out about it we were nearly done with treatment, but it is well worth doing, it's like a journal, family & friends can visit comment and sign the guestbook, you can also keep a picture journal of your journey....it's great, I highly recommend creating your site, all your family and friends need is your site name and all the information you add is right there at their finger tips easily keeping in touch with whats happening during this tough time.

           

          So wish I knew about it

           

          www.caringbridge.org

           

          You can create your site here, it's easy

           

          Jenn

  • Re: First Post. my son has pre-b all
    leann's_mom Registered Users
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    Praying for you and your son. I hate that you have to be here, but glad you found this forum. It's such a great place to find support.

     

    Best,

     

    Karen; mom to Leann (14), DX HR Pre-B ALL, MRD+, CNS3 disease, 7-14-10 and Cailyn (8)

    • Re: First Post. my son has pre-b all
      VGRANDE Registered Users
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      DAY 41/1825 ( 5 YEARS ) TILL I CAN BREATH AGAIN........

       

          We just got done with  Induction... So far so good.. Sat down with all the Dr's yesterday with my wife and went over the next 8 months.. Wow. I guess that is all I can say. This is just so much for a little boy but I guess we have no choice. Enzo would not go to sleep last night so we just watched TV and he laid on me like he did when he was a baby. When do you get over the feeling that you will lose you kid ? how do you stop having the thought in you head? I know he is going to be ok because he has no choice.  I look at my wife and she is so strong. I know we both want to be strong for each other but I am the 6'1 250 pound guy why am i such a ..... I guess god has a plan.. I hope everyone else kids are doing well. God bless you all ttyl.

      • Re: First Post. my son has pre-b all
        robbieh Registered Users
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        Congratulations on making it through induction!!!  That's a huge step. Lauren was diagnosed 7/30/10 and is almost 4 months into LTM; and for us induction and the beginning of consolidation were probably the worst part.  She seemed to start feeling better and having fewer side effects once she was a couple weeks into consolidation.  But every child has their own unique way of going through treatment.  She still had some hospitalizations and missed most of the school year, but she wasn't miserable like when chemo first started.

         

        As far as getting over the fear of losing your child:  I'm not sure that ever goes away.  It took me about 6 weeks after diagnosis before I could really sleep soundly and wake up without my first thought being "Lauren has cancer and I don't know how long she will live."  It's like having a nightmare that is reality when you wake up.  BUT, as you go along and see Enzo fighting so hard and having good days you will most likely will start to feel more confident.  The feeling still sneaks up on me, especially at night or when I'm in the shower.  But it makes me appreciate both my daughters, my husband, my 3 step children and my grandson even more.  I think there will always be fear in the back of our minds, but the trick is to not let it dominate every day and enjoy the good days!  I cry at random happy times too and I probably hug Lauren too much.  LOL, is that possible?? 

      • Re: First Post. my son has pre-b all
        tlblmom Registered Users
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        Hi,

        I remember so well seeing the protocol and looking at a calendar and flipping, flipping, flipping the pages to try to find the end of the frontline treatment. I was so overwhelmed! I thought "how can we do this? It's just too much!" But we do and we did. We just finished the frontline treatment and start LTM as soon as we make counts. It's one day at a time, one foot in front of the other, slowly, little steps and they add up over time. We still have a long ways to go - our LTM is scheduled to be done in April of 2013 - but I feel like we'll get there the same way we got here, one step at a time. Even though it is very big, you and your family really can do this. Your son joins many other children in my heartfelt prayers.

  • Re: First Post. my son has pre-b all
    VGRANDE Registered Users
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    Did anyone have trouble having their kid eat.. We went from him wanting to eat everything to him not wanting anything anymore. Also his sleeping has gotten so bad. He is up most of the night not sure if this is something that is normal. 

    • Re: First Post. my son has pre-b all
      robbieh Registered Users
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      Lauren didn't want to eat much during induction, even though she was on steroids.  That was really weird, because grocery shopping, helping me cook and most of all eating are her passions.  She lost weight during induction, but went back to eating normally a week or so into consolidation.  BUT, I know I've read plenty of posts on here about kids not wanting to eat, and while she was inpatient in the very beginning the dietitian talked to us about how to get calories into your child when they don't want to eat; gave us a booklet, etc.   We were expecting her appetite to diminish all through chemo, but it didn't. That said, I think she was rather unusual in continuing to eat.  Not to scare you, but I've known other kiddos at our clinic who need to go on feeding tubes, etc.  Hopefully it's something that passes, but your oncology team and a dietitian should be able to help.  A dietitian should have some creative ideas.

       

      Lauren didn't have issues with sleep, either but again I know I've read about sleep issues on here and have known kiddos that go to our clinic that have sleep issues.  I think it usually coincides with steroids.  I've talked to adult friends who are cancer survivors and one told me when he was on steroids it was nearly impossible to sleep.  Another friend told me that after she had vincrisitne she had no desire to eat for days.  It affects everyone differently.

       

      I hope you get some answers and will keep you in our prayers.  This journey seems like it brings a new issue on a regular basis.  Just when you get one resolved another one pops up; but you get better at it as you go along!  Then, before you know it you're in maintenance!

       

      Robbie

      • Re: First Post. my son has pre-b all
        VGRANDE Registered Users
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        Hello everyone Enzo is staying strong we are starting to see hair lose and he is still not eating well at all. we are flying to NJ this week so kind of scared with that. How is everyone else doing. we are on day 68 with 1210 days to go. one day at a time.

        • Re: First Post. my son has pre-b all
          sweetpeas_dad Registered Users
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          Problems with appetite are very common. Do a search on 'ng tube' and browse through the results. I wish I had done that before we went through the weight loss period.

           

          What you'll find is that a number of people had experiences similar to yours. Nutrition is important to feeling well and starving your way through the treatment is not the way to go. Don't wait until it gets critical before taking action. Many of us have been there before you, don't wait.

           

          We've experienced problems with sleep due to steroids. Don't know what to do about it, just that it coincides with steroid pulses.

           

          Best wishes, stay strong!

  • Re: First Post. my son has pre-b all
    Nicholas'sMommy Registered Users
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    We are praying for Enzo and your entire family.

  • pool advice....
    VGRANDE Registered Users
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    9/12/2011 Enzo has been doing a little better today he went in for his...Swimming we are looking into moving into a home with a pool so Enzo will be able to swim.What are everyones thoughts with pools that have chlorine? a salt water pool would be ideal, but we can not find one with that criteria. Does anyone allow their young children to swim while in the mist of recieving chemo treatments?

    • Re: pool advice....
      Gabbiesmom Registered Users
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      We have access to a pool that isn't overly populated and took Gabbie there often during front line treatment. Swimming seems to help with the achiness she had and still has. Also I think the low stress on the body makes it a great excercise for kids undergoing all of this.

    • Re: pool advice....
      Gavinsmom Registered Users
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      I asked that question this summer.  my practice says that if the anc is over 500 it is fine.  I don't know what your doctors would say? That is pretty much the rule for eveything we ask to do...zoo, movies, apple orchrd, etc...

       

      Hope that helps!

    • Re: pool advice....
      tcell_all Registered Users
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      We went to a water park after checking that the water was indeed chlorinated.  ANC was around 1000 and we were in between HDMTX rounds. That was a great day ;-) 

       

      Btw, we are looking to get him back to swimming a bit (chlorinated pool), but winter is coming and he may not like the chill when being out of the pool.

    • Re: pool advice....
      harrisms Registered Users
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      Our oncologists said swimming in a private pool (no public venues) was fine so long as no one else in the pool was young enough to be peeing in the pool or pooping into a swim diaper.  Bacteria from fecal matter in a swim diaper can pose a threat in spite of chlorine.

       

      We don't have a pool, but we have friends who do, and Emma swims every chance she gets.  It's great exercise and seems to give her back a feeling of being in control of her own body.

       

      Suzan

      • Re: pool advice....
        Elke'smom Registered Users
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        Hah!  Another frustrating example of wide differences among oncology practices.  I was told that swimming in most large public pool complexes or pool clubs was fine, as there are regulations and standards they have to meet as to pool care, hygiene, chemicals, etc.  I was told to be wary of private pools unless I knew the owners well and knew that they maintained their pools well, etc.  And baby/wading pools were out, of course, as the assumption with them is that there is a high probability of "accidents."

        • Re: pool advice....
          harrisms Registered Users
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          That is so interesting, Ann, and frustrating as well.  We would have loved to be able to swim in a large, public pool on occasion!  But I admit, I was pretty selective about which family pools I let Emma use.  Having a pool seemed like a lousy idea when I was house hunting with a 2 year old.  I sure wish we had one now. 

    • Re: pool advice....
      Elke'smom Registered Users
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      Of course, your own pool is ideal (which it sounds like you will have), as you can ensure that you maintain it adequately.

       

      Ann

    • Re: pool advice....
      robbieh Registered Users
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      We have our own pool (moved into this house 5 years ago) and I LOVE it!!!!  It's not the most practical around here (Kansas City) because of short swimming season.  Our docs said chlorinated pools are fine once Lauren was in LTM and ANC above 500.  It may have been OK prior to that, but we couldn't swim in the winter anyway.  We installed an electric pool cover  soon after we moved in and it does a couple things.  The big one is safety!  No one can accidentally fall in the pool; and the cover holds something crazy like 1500 pounds.  It is  a solid vinyl cover made by Cover Star; and I know there are other manufacturers.  The other thing it does is keep chemical levels constant in the pool.  We keep the pool covered unless we are swimming; and our pool never gets chemically imbalanced because it is protected from rain, debris getting in the pool during a big storm, and keeps wildlife out.  That may not be a big deal for a lot of people, but we had dead groundhogs in it before we got the cover.  We have deer, mice, raccoons, owls, foxes, coyotes, rabbits, you name it.  I left the pool open for about 3 hours one day and a large turtle ended up swimming in it!

       

      Some of our neighbors have switched from chlorine to a salt system and some love it; some hate it.  Seems like there is no middle ground on the salt vs. chlorine for them.  I will tell you that having a pool can sometimes be like having a giant hole in your back yard that sucks up money, but to us it is so worth it.  The cover really cuts down on cost of chemicals since it stays balanced, so just need chlorine rather than all the other stuff for when ph gets out of whack.   It's so nice to be able to swim in your own back yard and not worry whether or not there has been a fecal incident.  If there is, it's caused by my own kid...Vincristine really messes with her gi tract!

    • Re: pool advice....
      Peter'sMum Registered Users
      Currently Being Moderated

      We have just got a spa pool. It was actually Pete's Wish. Our onc said that Pete can go in it regardless, even under water, even when his counts are low (his ANC is practically zero at the mo), as long as we keep it exceptionally clean. And we do. And Pete absolutely loves it. It's a great family get-together occasion for us.

      Bridget

  • Re: First Post. my son has pre-b all
    VGRANDE Registered Users
    Currently Being Moderated

    09/23/2011 We had our first rush to the hospital yesterday. Enzo had 103.1 they have gotten the temp down under 100 but they will keep him in the hospital for 2 days just to make sure he is ok his bilirubin is at 2.7. I guess my question today to anyone is have you seen high bilirubin counts and if so what have they done. thanks

    • Re: First Post. my son has pre-b all
      harrisms Registered Users
      Currently Being Moderated

      I'm sorry to hear that Enzo is in the hospital, but I'm glad the fever is down.  Emma just got out yesterday after a five day stay because of a neutropenic fever. 

       

      Last April, Emma's bilirubin got up to 2.1, and her liver enzymes were quite elevated.  They ended up holding chemo, per protocol, until the numbers came back down.  Emma's on a different protocol (0434), but I'm guessing that the treatment for Enzo won't be too different.

       

      Suzan

  • Re: First Post. my son has pre-b all
    VGRANDE Registered Users
    Currently Being Moderated

    hear we go again.. 102 ... right when it looks like he was doing so great ... he had a great weekend it was like we had our little Enzo back like the old days.. this sucks.. 

  • Re: First Post. my son has pre-b all
    VGRANDE Registered Users
    Currently Being Moderated

    It was only a 24 hour stay so not to bad with the last poste..Question for everyone .. Enzo has not lost his hair yet ... i know stupid question but should i be worried that something is not working right .. I mean it has been 3 months when will he lose it.. its a little thin .

    • Re: First Post. my son has pre-b all
      Techno Registered Users
      Currently Being Moderated

      The most common time for them to loose their hair is in DI from the drug doxorubicin (DOXO)

      That drug he will only get three times, it's bright red and hard to miss.

       

      I think you are almost up to DI now, I think your finishing IM 1 right?

      -Brad

    • Re: First Post. my son has pre-b all
      Aaronsmom Registered Users
      Currently Being Moderated

      Hi everyone.  My 6 year old son Aaron was diagnosed in October 2011 with pre-B ALL.  He's considered high risk because he was a "slow early responder".  We are finishing up the consolidation stage, and Aaron never really lost his hair.  He had incredibly thick hair to start.  I tell people that he started with enough hair for 5 people and now he's down to enough hair for 2 people.  I've had the same irrational worries.  He didn't lose his hair so something must be wrong.  Or, he's feeling ok, something didn't work right.  I can't let go of the worry, but apparently not every kid loses all their hair.

      • Re: First Post. my son has pre-b all
        Gabbiesmom Registered Users
        Currently Being Moderated

        Hi Aarons Mom!

         

        Sounds like his hair has been doing a lot of thinning eh?    Gabbie's thinned to about half during the first part of consolidation, and by the second month it was all gone. It fell out again in DI.  I think for her it was Dox that started it all off.

         

        Hang in there!

  • Re: First Post. my son has pre-b all
    KristinaRodman Registered Users
    Currently Being Moderated

    Welcome!!  My son was diagnosed with ALL 3 weeks ago. It is really hard, and scary. I am so glad I started coming here. I have already learned so much by reading other people's posts. It makes you feel, not so alone. And everyone here has been super nice and really helpful. It makes you feel stronger to have people around that have already survived this journey.

  • Re: First Post. my son has pre-b all
    VGRANDE Registered Users
    Currently Being Moderated

    1/11/12  well 6 months into this fight Enzo I wish I could say it's easy but not so much he has been in the hospital twice for fevers and 3 blood transfushions over the last month but I guess that is the life of a kid with leukemia . We have the best Drs and are blessed with everyone at Arnald Palmer in Orlando please feel free to follow Enzo on his facebook page . Look me up vgrande3331@msn.com and the  enzos page is on mine . I will try to post a photo of him as well god bless everyone let me know your little ones are doing good or bad

  • Re: First Post. my son has pre-b all
    VGRANDE Registered Users
    Currently Being Moderated

    Need feedback ....Enzo is getting his 4 blood transfusion today ... How many can this little guy get .. Can anyone else who has been through this let me know how many more to go

    • Re: First Post. my son has pre-b all
      abslater Registered Users
      Currently Being Moderated

      HI -- I'd have to look at my daughters beads to know for sure - but she's had many blood tranfusions, especially in the beginning - she was diagnosed this past summer, June 2011. She's only had platelets a few times, but blood, many times during Induction, and some in Consolidation. None during Interim Maintenance. We're about to start DI ...and from others, I've been told to expect more tranfusions during this phase...it sucks, all of it...b

    • Re: First Post. my son has pre-b all
      Gabbiesmom Registered Users
      Currently Being Moderated

      Hi there

       

      My daughter has Tcell ALL. She recieved a blood transfusion monthly through frontline treatment (9 mo) and one platelet transfusion after the first month of treatment (I'm not remembering how many the first month for platelets, I want to say 3?)  She has also recieved one blood transfusion early in LTM.  Gabbie is in the 4th cycel of LTM and last week all of her counts zipped down (she was fighting a rough viral cold) including her Hbg which was about 9. I almost stood and cheered when today, a week later her Hbg was up to nearly 11. Way to grow RBC!!   

       

      In other words, its completely with in the bounds of normal to have many transfusions during treatment, especially during front line. No worries!!  And unfortunately, there is no way of knowing how many more he might need.   Hang in there!

    • Re: First Post. my son has pre-b all
      burmang Registered Users
      Currently Being Moderated

      Don't have any real advice on this one - just wanted to stand in solidarity and say we are also getting our fourth transfusion of red blood cells today (her Hgb is 7.0) - we are in DI and all of her counts are very low + she is fighting off some nasty virus. Hope all goes well for you and Enzo!

    • Re: First Post. my son has pre-b all
      Techno Registered Users
      Currently Being Moderated

      We have had 7 so far, We know others that have had more. 

      My wife is a 49ers fan and I think she needed a Transfusion last night.

      Had to stick it to you a little Vince

    • Re: First Post. my son has pre-b all
      RettsMom Registered Users
      Currently Being Moderated

      I have no advice on the transfusions as my son is on a different treatment regimen and hasn't needed any since induction, however...I just received in the mail from my grandmother who lives in Melbourne Beach an article about Enzo with a great picture!  Small world, isn't it?  I live in Maryland and she sent it to me since it reminded her of her great-grandson!

      Hang in there!

      Kristen

  • Re: First Post. my son has pre-b all
    VGRANDE Registered Users
    Currently Being Moderated

    So wanted to upstate everyone . So my wife was so happy to get a night with her friends she had this in the plans for weeks the night before the Superbowl so happy ... The girls come that morning to pick her up to go to Tampa for the night , she says vinnie you think I should take my car .. No I got it go enjoy... Well around 3pm Enzo and Larissa and I are watching TV he comes next to me and I pick him up ... Omg he seems warm .. Let me just check... Son of a bitch 102 .. I take off his shirt .. No no no please your mom needs a night out .. Ok let him relax in his room with a fan .. Cool 20 min later 100 looks good ... Ok I will check at 4 .. Son of a bich 101.5 ok what am i  to do . Txt Elaine .. She says do the temp under his arm so I did 100.7 ok I tell her let me take a ride to the hospital just to check.....very long story made short ..Elaine gets car meets me at hospit at 11 pm Enzo gets red blood he was a 7.1 hemo and we smile because even thought she lost a badly needed night out with the girls their was no other place she wanted to be other then holding her son.. Amazing wife I have .. Enzo has done real well since sat niight he has been eating well and running around with his sister.. Today is their 4th birthday .. I hope I can write on this page on his 25th birthday ( I know I will ) .. Well hope everyone else is doing well .... One last thing how great was it watch the NY GIANTS take down the Pats again .. Love it .

  • Re: First Post. my son has pre-b all
    VGRANDE Registered Users
    Currently Being Moderated

    Enzo is having a great week .. His hair is back he is doing crazy Enzo things but I just want to ask everyone when will we be able to start to breath again.. I would also love to see how everyone's kids are doing good or bad and how long have you been down this long road.

  • Re: First Post. my son has pre-b all
    VGRANDE Registered Users
    Currently Being Moderated

    Enzo is doing good but since we have been on LTM the kid does not sleep anyone have any tricks for us .

    • Re: First Post. my son has pre-b all
      Ingridktw Registered Users
      Currently Being Moderated

      My son is on an anti-nausea drug that is also an antihistamine, hydroxizine. So, it helps with his allergies/coughs a bit and also makes him drowsy.  Other than that, just the normal kid stuff.  These days, he'll only nap in the car...  Good luck!

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