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#41 sunflower

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Posted 13 February 2012 - 12:30 AM

I just wanted to take a moment to say how wonderful all of you are!



#42 Laila98

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Posted 13 February 2012 - 02:25 AM

Thank you all for being here for me and being so supportive! It means a lot to me I don't really have a lot of friends and stuff right now it's been a hard time and I haven't been in school... I'll try not to read up to much on things I tried going on hospitals sites to read their information instead of just websites... I hope they find a cure one day... Is it true I wont be able to have kids now?? Also I don't know how they knew Iw as in the acc phase, they did a biopsy thing and then my pcp or pcr something like that came back bad? that's just what they told me I don't know really so i'm not gonna try and act like I do...

***Sunflower I tried to send you a private message but it says your inbox was full lol.



#43 jjg

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Posted 13 February 2012 - 04:09 AM

Sounds as if why they say you are in accel phase should be one of the questions to ask your oncologist/hematologist, hopefully some time this week. If you are in accel phase I believe that it becomes more important to be treated by somebody with a good knowledge of CML. If you are looking for recommendations for a doc in your area you may be best to start a new thread with that as the title. Not all onc have an expert knowledge of CML.

The having kids issue is one close to my heart because I was dx the month before we going to start trying for a family. It is true that you can't, or in any case shouldn't have a baby on any of the current treatments. But it is possible to get a good enough response to the treatment then to stop treatment long enough for a pregnancy. It's a bit scary but others have done it and it is something I hope to try in the next year.  My problem is that I'm 39 tmr so I'm having to race into this with less than the recommended time with a good response. You don't have this problem. Probably things will improve further before you want to have kids. So as far as I'm concerned the answer is, it might not be easy but you don't have to give up on having kids.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#44 Trey

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Posted 13 February 2012 - 11:08 AM

CML is 95% survivable for the long term for most of us.  You should read this more more accurate information:

http://community.lls.org/thread/2600



#45 CallMeLucky

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Posted 13 February 2012 - 11:09 AM

If you are able to go to University of Michigan, try to see Dr Talpaz, he is one of the leading CML doctors in the world and if you are a minor in accelerated phase, I would expect him to be interested in your case.

I wouldn't get hung up on 30 years as an end point, I can assure you that if you respond well on TKI drugs and live another 30 years, you will not drop dead on your 30 year anniversary of being diagnosed.  Keep in mind that this is typically an older person's disease and the conversations around it are often focused to that audience.  What I mean by this is that if most people who get CML are in their 50's and 60's, it would sound kind of silly to tell them they are going to live another 50 years.  30 years was just a number that was thrown out there.  A more accurate depiction is the study that analyzed people who are diagnosed today given the treatment options that are available and it was determined that if someone responds well to TKI treatment they will live their "normal life span".  The longer you do well on the drug, the less likely you are to relapse so I would not worry about the number of years you have left.  With medicine being where it is today for this disease, it is likely you will survive this.  I was 37 when diagnosed and I while I would be happy to get 30 years, I believe there is a good chance I will be able to surpass that mark.  I told my wife yesterday that I'm going to be nagging her when I'm 80 about how my Gleevec is making me tired.

With regard to having children later in life I would not rule that out by any means.  TKI drugs have not been shown to cause infertility, the only issue is that you shouldn't take such a powerful drug while you are pregnant because it may harm the baby.  There have been a number of women who have gotten stable with their disease, stopped taking their drug, had the baby and then started taking the drug again and did just fine and had happy healthy babies.  So don't rule anything out.  Right now your focus should just be to get healthy.  You are doing the right thing by going to your aunt if your dad is not up to handling this right now.  I know how hard that is but you have to do what is right for you.  He is the parent and he is the adult, he will have to work things out for himself.  In time things will likely get better between you two, right now it is overwhelming.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#46 NotJack?

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Posted 13 February 2012 - 11:56 AM

Hey Laila,

Yeah, Trey and Lucky are so right.  My specialist at the Mayo clinic does not use years anymore to give you an idea how long you can live, he says that now, with these drugs, and the promise of more on the near horizon, you live a normal lifespan with CML. 

There is a good list of questions to ask your oncologist when you see him/her on Trey's Blog.  I would have your aunt print them out and write down the answers while you are there.  Or bring someone else to do that if you can so that you both can listen instead of trying to remember all of this stuff!  And get copies of all of your tests, including the ones used to diagnose you.  If you have questions on anything having to do with the tests or treatment, Trey, or someone who understands all of this can help you to understand this.  I am afraid that this is not my strong point  (if I have one!  lol)

Here are some more resources for you:

Doctors ranked in top 1% in pediatric hematology/oncology in your area:

http://health.usnews.com/top-doctors/search?specialist=Pediatric+Hematologist-Oncologists&specialties=050&doctor_gender=&doctor=Name&hospital=Hospital+Name&location=mi&distance=

Here is a list of resources for MI  for everything from travel assistance to assistance with other costs for you and your aunt: 

http://www.michigancancer.org/Resources/FinancialResources.cfm

I called Novartis to get the local representative and they gave me these numbers for you:

To locate a local rep:   1800 631 8184

Or their main patient line:  1 866 884 5906

Please let your wonderful aunt deal with all of these details,  you should try to concentrate on taking care of yourself.  Try to find a good book, preferably a series that can give you a break.  You are doing great--keep it up. And when you get scared let us all know. 

I talked with a best friend's daughter today, she is a strong and smart young lady like you, and  about your age.  She has been interested in finding a pen pal online that she can talk to.  She, like you, could use someone her age to talk to.  Her dad just recently got ALS (we used to coach youth hockey together), and her mom no longer lives with her.  She is going through a lot.  She was excited at the thought of meeting  you and talking. I am going over to their house after work tonight to show her how to log in and join.  I hope that that is ok with you.

Relax, and "breath through your eyelids"  as they said in Bull Durham!   lol

I am off to see if my cancer team can help with other suggestions,  Jack.




Jack


#47 NotJack?

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Posted 13 February 2012 - 12:04 PM

Oh, and look at how many people care about you here -- there are over 550 looks!  There are a large number of people who are with you in this journey, but feel that what they wanted to say in support was already said.


Jack


#48 NotJack?

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Posted 13 February 2012 - 12:25 PM

Oh, and one more thing,  Tell your aunt to insist on a meeting with the oncologist today or tomorrow!  have her tell them that you have started taking meds, and need a dr ASAP.  You really do need a doctor to monitor you closely through this treatment, like .  I am sure that they will make a hole in their day to help.  If not, go to the next on the list.  You and your aunt are in control of this, don't be put off.  I missed CallMeLucky's endorsement of Dr.  Talpaz, sounds like the one to go after!


Jack


#49 Susan61

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Posted 13 February 2012 - 01:45 PM

Hi:  I agree with Jack your Aunt needs to get you to a Oncology Specialist for CML so you can get things going.

I forgot you were in Michigan, but do not know how far you are from the University of Michigan.  Don't try to overload your brain trying to figure out so many things at once.  Also, glad you said they did a biopsy on you because that is how they get the whole picture of what is going on before they start treatment. 

    I am sure your Aunt is covering all bases to get things going in the right direction for you.  Hope your feeling more relaxed now that things are working out with getting the proper care.

    Just ask anything you want, and never feel that anything is not important to ask.  That is how you will learn all about how your being treated and what to expect.

    You asked about children.  I hope thats a long way off for you, but we have had people with CML who have been able to give birth once their disease was stable.  You do not need to go into all of that now.  Enjoy your teen years, you are so young.  Saw your picture on your profile.  Your a real cutie too.  God Bless You

Susan



#50 jrsboo

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Posted 13 February 2012 - 03:55 PM

Dear Laila:  I find it helpful to have lists, so I made one up for you:

To do:

  1. Don't panic.
  2. Find Hemotologist/Oncologist, hopefully it is someone very familiar with CML
  3. Breathe
  4. Take someone with you to all appointments for the first few months, since you are underage, I am assuming that someone has to be with you for all your appointments, but you should take them with you into the exam room too.  Not just in the waiting room.  There will be a bazillion questions and answers, and four ears are way better than two.
  5. Breathe again.
  6. Tests that should be done (you may have already had some of these) ALWAYS REQUEST A COPY OF THE TEST RESULTS and make a binder and keep them:
    1. PCR: looks for leukemic cells
    2. CBC: complete blood chemistry—to see what your white blood cell count is: normal is 4000 to 10,000.  You can expect to have this blood test done every week for a month, then every 2 weeks for 2 months, then every month for 3 months, then every 3 months for a really really long time. 
    3. Bone Marrow Biopsy: looks at your bone marrow and can detect mutations if any (most do not).  You can expect to get one at diagnosis, at 6 months and then maybe one more at a year after that.  You can ask to be sedated for these.
  7. Fill all prescriptions and take them EXACTLY as prescribed. 
  8. Continue not to panic, go to LLS board a LOT and post any questions that you have.
  9. Live a very long life, taking a pill every day.

I know you are having family issues at the same time as your medical issues.  And I DO remember being a teenager and how hard it is, the struggle for independence countered with the need to be loved for who you are, especially with parents who are not the Disney version of parents.  I really do remember.  What was hard to realize at the time, is that our parents don't always have the right answer, that sometimes, they have their own emotional issues that they are dealing with, and as much as we love them and want them to be the parent of our dreams, sometimes they are just not capable of that at that time.   And that means that you have to be the adult and learn to make choices that are best for you.  And that sucks.  And having this diagnosis sucks.  But it gets better.  So much better! 

And then you meet someone who loves you just the way you are......warts and all.  And you love them back, warts and all (in the beginning you even think the warts are cute--sigh, that doesn't last).   And you learn how to have a meaningful, give and take, all out love.

Keep us posted!

Hugs,

Caroline



#51 NotJack?

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Posted 13 February 2012 - 04:09 PM

Ok,  got back from cancer center.  They had all of the suggestions that you have already received.  Plus, they called the rep for Novartis, and he said to go to the website for Novartis,  and go to "patient access now" .   If that doesn't due the trick he said to call him and he would see what he could do from his end.  I will message you the name and number.  Look for someone to message you this evening, I will hook my friends daughter up with the site.  I will tell you not to exchange phones or addresses for your own protection (and hers).   If you guys click and want to talk to each on the phone  down the road,  we can figure out a meet and greet, by connecting through your aunt and my friend first.  Be sure to run everything through your aunt to protect yourself--especially at this vulnerable time for you!  The internet is a wonderful resource, but you have to be careful too. Jack


Jack


#52 Happycat

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Posted 13 February 2012 - 06:56 PM

Jack,

You are an absolute sweetheart!  I know you do this out of your own sense of what is right, but may the Lord bless you for your kindness.

Traci



#53 Happycat

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Posted 13 February 2012 - 07:10 PM

Laila,

Goodness!  I don't get on for a few days and suddenly find all these big changes for you!  My, sounds like it was quite a weekend for you!  I hope things are settling down now and you are getting the help you need.

Honey, I'm so sorry you don't seem to have either your mom or your dad to help you through this. I can tell you there are hundreds of people here who wish they were close enough to you in MI to provide some assistance.  Please know that we are all in your corner.

You'll be okay, you will really be okay. Hard to believe sometimes, but you're strong. You can do this.  All my best to you, and lots of (((((hugs))))).  I only wish virtual hugs were as satisfying as real ones! 

Traci



#54 Judy2

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Posted 13 February 2012 - 09:57 PM

Hi Jack and Laila,

Jack, you are incredible, I wouldn't mind having you in my corner.

Leila, you have gotten a lot of good advice from everyone on this board. If your aunt has any questions she  can private message any of us. We are all here to help.

Judy



#55 CallMeLucky

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Posted 14 February 2012 - 12:34 PM

Laila - some resources you and your Aunt should look at regarding health insurance

This first link is for the application for MIChild.  MIChild is a program in MI to provide coverage to uninsured children.  It is very inexpensive but I'm not sure how much they will cover in terms of specialized care.  Your aunt should call and speak to a counselor.

http://www.michigan....4931---,00.html

This link is for the federal site for coverage for people with pre-existing conditions.  This coverage will most likely cover your care, it is a bit more expensive, but not unreasonable.  Given your status as a minor there are likely other programs out there as well.

http://www.healthcar...ce-plan/mi.html

In addition if your aunt becomes your guardian, this should qualify as a "life changing event" and allow her to add you to her insurance policy, assuming she has one through an employer.

Best of luck...


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#56 luvmybees24

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Posted 14 February 2012 - 08:58 PM

I have no insurance and can't afford Tasigna either (9 grand a MONTH) and Novartis gives it to me for free for a year and after a year if I still don't have insurance I just have to re-apply and can get it again. Contact them.

Novarits is the company that makes Tasigna.



#57 Laila98

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Posted 14 February 2012 - 09:42 PM

Hi all! I'm going to write back to everyone in one message per is just seems more lodgical this way lol. First off, THANK YOU everyone for writing me on here and thinking about me and supporting me! Logging on tonight and seeing all these responses was like wow! I did print off the entire disscussion board, highlighted websites and informtion and gave it all to my Aunt and she's reading all of it now (she says thanks! as do I). I saw an oncologist today for the first time and the social worker heled with my aunt and on the phone to get my medicine. I am going to University of Michigan Cancer Center which is suppose to be like the top in the state or world or whatever. My aunt called them all day monday to ensure i got an appointment and stressed everything that was going on and how long it's been. I had labs and met my specalist in CML and did physicals and EKG some other scan thing and then just a lot of junk. It was a lllooonnngggg day I hate being in the pediatrics sections, I know i'm young but like I'm not a little kid..I'm on hydrea and i'm so exhausted starting tasigna, UOFM gave me some out of their pharmacy. I'll keep posted on how that goes.

Jack- Thank you so much for getting your friends daughter set up, I look forward to hearing from her. I wont give personal information nor ask for it because I unfort already did find out that people online can be creepy, even on cancer sites... I learned a valuable lesson there, luckily it was only my phone number so we could talk about having CML and stuff. So thank you for the advice, I promise is we end up going that route to wanting to talk on the phone we'll go through adults. But thank you again, I'm kinda excited to talk to someone my own age who's going through some struggles like me, not glad she's struggling but hopefully you know what I mean lol. Thank you also for the phone number to that guy you had sent me I gave that to my aunt to just in case.. by the way she said thank you for saying to hook up with her and the other girls parent / caregiver before we go sending info.

Susan: Thank you for letting me talk to you all the time through PM and kind of being my rock this past weekend. I know the battles not over and I hate the outcome but thank you for helping me so much! Also, thanks for calling me a cutie haha.

Jrsboo: Thank you for the list of things to do! I noticed breath on there a few times lol that does seem like the thing I forget to do a lot... I find myself sitting there listening to them holding my breath and then  I wonder why i wanna pass out.. So thank you for that I will keep that on my dry erase board next to my bed so i remember!!

Traci- Thank you for your virtual hugs and yeah a lot did change in seems like over night... It was not a fun change but I'm slowly learning over these last few years life is all about change so I need to figure out how to start accepting them... I'm not magical I can't change it just wish this one thing was different... like if everyone had one wish i'd use it not to cure my cancer but to fix what happened this weekend.. Thank you for the support and it means a lot having you care so much!

Judy: thank you for allowing to accept questions and talking to my aunt about anything she might want to know about and she says thank you as well. i'm glad ya'll are here and have givin me so much information and support it rocks

CallMeLucky: Thank you for the information on minors for the state of Mi, says my Aunt. I guess shes lookin into putting me on her or michigan care or something I don't know I told her I'd get a job to pay her back anything she's outta pocket but she said I'm not allowed to get a job until I finish school and not t oworry about the bills i'm a kid... A "kid" FYI to all the adults on this board we hate being called "just a kld"I'm not just  a kid I'm smart, I have feelings, emotions and I have just as much hardship problems as you "Adults"

Luvmybees24: thanks for the information hun! : )

Okay so I honestly think I replied to everyone to said something to me since the last time I was on, if i missed you I'm sorry it's nothing person I tried answering everyones questions and concerns but I want to thank ALL of you for your support, you have no idea how much I need it right now and how nice it is to feel loved.. even it it's virtually  lol. I don't have many friends because daddy moved us out here like a month ago to get out of town and I grew up there so it's like an adjustment and then I got sick so I haven't really met anyone.. Plus I guess I'm kinda a nerdy loner.. I do really well in school but I enjoy being alone and being creative. I have been so tired but not able to sleep so I stay up making clothes and stuff to keep my mind busy. Ya'll will see me in retail stores one day ;-) remember the name lol!! Well as long as I'm still living, now even going to college seems like an illusion... I know it's not disney but I just hope to at least be able to go to college and heck see my first R rated movie in theater.. I dunno a part of me is like this isn't real and the other part of me is like omg I can't breath anymore... I'm drowning and everyone is just sitting there watching and no one sticks out a hand to pull me up... on that note happy valentines day i'm gonna go thanks again you guys!



#58 Laila98

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Posted 14 February 2012 - 10:33 PM

by the way... I'M GONNA GET WARTS????????????????



#59 Susan61

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Posted 14 February 2012 - 10:36 PM

Laila:  Your message was so beautifully written, and well explained.  I am so happy for you, and the fact that things are all falling into place.  Like I said it was a matter of getting to the right people to get things moving.

Keep us all posted, and you can still private message me anytime.

God Bless You

Susan



#60 Guest_billronm_*

Guest_billronm_*
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Posted 14 February 2012 - 11:16 PM

Dear Sweet Laila,

   First of all I believe you are the strongest person I've ever met. And one of the smartest also. At your age to handle all this I think I speak for everyone on this site.

We all are so proud of you and your aunt.  My e-mail is posted so feel free to write me anytime,or your aunt also. We are all basically the same as you except for the age difference. Many of us come from broken homes, or had parents who were so involved with themselves or their work it's like we raised ourselves. My sister and brother and me were afraid to tell our mother when we were sick because we would get yelled at. She had nervous problems and I guess she just didn't want to have to deal with our illnesses. It wasn,t because she didn,t love us but she loved us too much and she was so afraid something would happen to us,And she couldn't handle that. I finally figured that out when I was about 35. We became very close, but those past memorys still leave my brother,sister,and I confused. We just  accept the fact that, that's how it was  and When we lost her we all lost a part of ourselves. I know you can,t compare your father to my mother. But please don;t hate your parents. My father left my mother when I was a newborn. Nobody ever did give me the facts. All I know is he was in show business. What I;m trying to say is that you have shown how strong you are , so just concentrate on getting better. Make that your first and only priority. Once the meds kick in you will feel so much better. Your aunt has agreed to help you so don,t think of anything else Eat when your hungry and sleep when you are tired. And by the way I go to the cancer center in Erie Pa, and I,ve met 3 young women in their 20;s or maybe a bit older they have cml but they are taking a break from their meds so they can have a baby. And from the looks of them they will have had their babies before I get home.

                                                                                                      Sincerly Billie---






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