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#1 Laila98

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Posted 22 March 2012 - 10:20 PM

Someone reported to Caringbridge that i wasn't 18 and they cancelled my account. I say someone and know it just wasn't a "fluke" because they emailed me saying someone had reported an incident that I was underage. They said that my guardian would have to make an account and update for me. I understand why but think it's foolish cause I wasn't abusing the site but again I get safty rules and regulations. So I wanted you all to know I did not cancel the site, I loved getting your messages in my guestbook and will miss them but it was closed per me being a minor and hopened it myself. I hope everyone is doing well and I'km getting there, have really bad mouth sores and on meds and mouth wash for em. Really tired and having tummy problems but I'm alive so i shouldn't complain to much... have massive headache tonight and still getting sick but not as much... walking is starting soon :'( i don't wanna walk a mile a day but whatever gotta do it...

there's an update.

xo



#2 luvmybees24

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Posted 22 March 2012 - 10:42 PM

Can't you just have your aunt open it for you again and then you can update it yourself? That is really horrible that they won't let minors keep their own caring bridge site, especially if your aunt is monitoring you. I am glad you are doing well (well as well as you can). How long do you have to stay in the hospital for? I didn't know they made you walk a mile a day after a BMT? I am sure you will slowly build up to that mile. I hope your mouth sores feel better fast!

Laura.



#3 jjg

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Posted 22 March 2012 - 11:16 PM

Hi Laila,

Great to hear from you, pity about the caringbridge thing but good that you are making progress.

Yep walking is in your future, it's one of the best medicines they have. When my Dad had cancer a year and a bit ago I used to shuffle the corridors with him. It's going to be tiring at first but  it's more interesting than your room.

I've never had mouth sores but they must suck. I'm moaning at the moment because of a repeat root canal. Which is probably about 10% as bad as mouth sores but I'm moaning anyway. You can complain as much as you like but I hope you have less and less to complain about as the days go by.

xo


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


#4 jamietoftum@hotmail.com

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Posted 22 March 2012 - 11:37 PM

When I called the Director who covers donations and volunteer services (which is done all the time) by anonymous persons after hearing of stories.  The hospital protocol is to have a room number.  I said I just wanted to mail a package to a patient after hearing her story on the LLS boards and how I just wanted to help.  I am a local director for a non-profit that has 8 branches and delivers to 10 Children's hospitals.  She transferred me to the TRANSPLANT COORDINATOR.  I explained who I was and that I would like to mail something and if she could make sure this patient got it.  She said that NO child with CML or AML had received a recent transplant at her hospital and asked if I could forward the LLS link.  I even asked perhaps she is using another name or has her information blocked for privacy reasons and was told, that there IS NO 15 year old girl going through treatment.  She asked if I had seen a picture and I told her there was one on the site and asked for me to email her the links.   SHE then reviewed the Caringbrigge posts as well as the LLS posts.  THIS is the email I received from her.  She also stated via the phone that the hospital is usually the one to set up the Caringbridge site.  I assume through their investigation they would have allerted LLS, Caringbridge and if they feel it is an illegal activity I would assume proper authorities.  BELOW is the email I received.  I have omitted her name to protect her identity.

I've read through pretty much everything and am pretty sure this is a scam, which is just so sad and unfortunate.  If you come across any other information regarding this patient, can you please forward it on to me?  I'd certainly appreciate it. 

 

I can't find any proof that this patient has received funds or anything like that so I'm not sure what the jist of doing this would be.  But it's not someone in our system (which they claim).

Clinical Care Coordinator

1500 E. Medical Center Drive.

Ann Arbor, Mi 48109

Mott C&W

I received a nasty email from the supposed aunt, and several messages to my personal facebook account.  I am just perplexed and do not want to be in the middle of this.  I was threatened as well as the coordinator for breaching HIPPA. Since she never confirmed or denied a name and after reviewing the posts said this was not a normal person, it is not a breech of HIPPA.  Statistics as well as number of patients receiving transplant is public knowledge and is available by the public health department as a statistic.  This record is also available to media and other organizations. I hope and pray that there is some freaky miscommunication.  HOWEVER I tend to believe a Reputable organization and that the transplant coordinator and hospital which has been investigating this.  I have been harassed for just trying to share what I believe is the truth.  This has caused me undue stress and it saddens me to think that someone would pose as a patient to prey upon our sympathies.  Perhaps I should not have posted my findings and just allowed everyone to continue on sending sentiments, because apparently this person who is claiming these things maybe does need support, compassion, attention, love and prayers.

I choose to NO longer participate in this discussion.  IF Laila is a real child and maybe fallen though the cracks I wish her the best. However I tend to believe the Transplant Coordinator and the other professional team that there is no such patient on this unit.




#5 jjg

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Posted 23 March 2012 - 01:56 AM

Interesting...well not really interesting, more like disturbing. I guess we will see what happens. I always like to believe the best of people, generally but not always that works.


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


#6 Happycat

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Posted 23 March 2012 - 03:55 AM

Laila,

Glad to see you feel well enough to post. I did notice the caringbridge site was down. Just remember one step at a time, just like the Winter Wizard. Don't worry about complaining, perfectly okay to do that. Sometimes you've just gotta vent, and that's one reason why we are here.

(((Hugs)))

Traci



#7 pammartin

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Posted 23 March 2012 - 08:45 AM

I for one thank you for the information and for trying to help someone.  I have read you are struggling with your own battles, but have continued to think of other people.  Sharing the information was something I would have done, as you stated, if the patient is legitimate, then I wish them well, if not, it is a horrible way to try to scam support and money out of kind souls who either have cancer or care about someone who has cancer.  We know what it is like to have CML, and for someone to possibly pretend, or go further and allow the members to believe they have lost response can possibily scare every one of us, well at least me, and I am not afraid to admit it.  I saw so many young people loosing response in a short time and even members who have been here for years noted this phenomenon has not happened in the past, yes there are some, yes it does happen, but not usually at the advanced rate that is has been lately.  My greatest concern was the requests for monetary donations, I believe in this practice, but in just 3 or 4 short weeks a person goes from loosing response to total transplant, from what I have read it takes many more weeks to find donor, even if one is found then the harvesting of the donor cells, the chemotherapy to destroy the patients own cells, and all processes take much long than 3 weeks, even if things go perfectly, which from what I have read they do not.  If I have read incorrect information, I apologize to BMT patients.  And in the middle of all the horror, it seems to always go to requests for money.  That's my 2 cents, of course that and a $1.75 will get you a cup of coffee at the local convenience store.

I sincerely hope you begin to feel better, keep in touch.

Pam



#8 HeatherZ

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Posted 23 March 2012 - 08:57 AM

I too wondered about the timing of everything - I thought it took much longer to get to transplant.  I also wondered why there was a rush to transplant if she had not even started the Tasigna - I thought they would have wanted to wait to see if she got a resonse from that.  It is so sad that someone would pretend to have something so horrible.  If the information about Laila being a scam is accurate, I do believe that person needs some mental health assistance!



#9 Trey

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Posted 23 March 2012 - 09:17 AM

I don't know, but I would suggest some caution here.  The wrong questions may have been asked.

For my part, I will err on the side of believing everything anyone says about their story here, and support them accordingly.

EDIT:

The message I replied to was deleted by L&LS, so I deleted my specific comments about that message.

Message was edited by: Trey



#10 pammartin

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Posted 23 March 2012 - 09:44 AM

I agree Trey, and thank you for your thoughful post.  I was going off the Caringbridge site and information on there. A donor had been found in a few days March 3-5 I believe, which is awesome, and the hospital was moving forward with the transplant.  The relative posted on Tuesday of this week at Caringbridge the individual had completed the transplant process and was doing well.  I would not guess at information, it is what was provided for readers to support.



#11 Laila98

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Posted 23 March 2012 - 10:57 AM

Just so you know I have never asked for money or gifts ! I never said I was completed with my treatment I said I had the transplant which if you know anything about bmt transplant takes short time, it's waiting to engraft to happen. Why the heck would I lie about having cancer y'all are just mean seriously, just plain mean. The people who do believe in me you have my email everyone else I never asked for your time or anything else I just needed support! I idnt make you talk to me :(. I don't know what was said by Jamie cause its been deleted by someone but I can only imagin by the replies I do see. I was on Atsina the entire tIme waiting, I  found a donor and two 1/2 weeks late started conditioning chemo so I don't see how it's wrong but I don't want replies all I wanted to do was inform the people who DID want to know an update that's all. Thank you to y'all who have helped me through this. But the only tHing I am guilty of is being dumb enough to open up online... 

Again you don't have to believe me, you can believe whatever you want but know I very much so have CML and Jamie it might've u common in younger people as you said to my aunt but it's not as uncommon as you thi and someone even wrote me of here giving me stories of others my age!  Thanks yallvye

Message was edited by: Brooke15



#12 luvmybees24

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Posted 23 March 2012 - 02:25 PM

I don't know...I honestly think Laila is for real and this is why. I have had experience with people who make up stories online for attention and usually it's for money or sympathy. She has never asked for money, items or anything but advice and support. She also has not posted enough to make me think she is just some weirdo attention seeking person either posing as a child or a child making up this disease. She knows about CML, all her facts and treatments seem accurate to me and she doesn't post a lot. In my experience, liars who are looking for attention are ALWAYS on the forum making "poor me" posts and will fight the fact they are "legit" like crazy. She just doesn't do that. I would hate for any of us to assume this poor girl is a liar and not give her the support she needs. I can't imagine being 15, going through this and having people on a support group bash me and think I'm making it all up. Poor girl!



#13 jamietoftum@hotmail.com

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Posted 23 March 2012 - 03:31 PM

All I was simply doing was stating what I had been told to me by the hospital.  I was NOT trying to bash or hurt anyone. Since AML/CML is pretty rare, the coordinator was pretty perplexed.  She asked for the links and investigated this pretty thoroughly.  She read all of the posts and is aware of all patients both pre and post op the coordinator is pretty up on things and by now has checked with every unit in that hospital.  There was no patient undergoing conditioning, waiting for a transplant or had received one.   I understand that she never asked for anything.  But hearing her story made me want to do something, knowing how NOT FUN this road is.  I have invested my time, support and engery on something I feel was wasted. I have received emails putting me down etc.  At this point I completely give up.  I wish Laila the best. 



#14 CallMeLucky

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Posted 23 March 2012 - 03:32 PM

I agree.  I believe in giving people the benefit of the doubt in situations like this.  It's kind of like what the military told me when I was trying to arrange a burial with military honors for my brother in law.  They asked if I had his discharge papers from the service and I told them I did not, we did not have access to any of his belongings and things happened very quickly.  The military said it was not a problem and they would do it.  They said they would rather give someone the honors and be wrong then not give someone the honors who deserved it and be wrong.

At the end of the day the worst case scenario would be that this individual was perpetrating a fraud - I don't think that is the case but even if it was, so what?  I would rather give someone support who didn't need it then withhold support from someone who did need it.

In my opinion it was very selfish to call this out.  There could be numerous reasons why this is legitimate and the investigative work of a few individuals is hardly reason for the community to turn their back on Laila.  There was no eminent danger here.  Who were you trying to save?  Pretty much everyone on this site is an adult.  If you are dumb enough to get scammed on the Internet then you deserve to part with your money.  Laila did not ask for money, and if this was some sort of sophisticated scam where she was grooming people to ask for money later, I again say only a fool and their money are parted.  As tragic as Laila's story is, I would not be sending her money based on things I read over the Internet.  Should I have gotten to the point I wanted to help her or if help was requested, I would have done my own due diligence and only after I felt satisfied that the situation met up to my standards would I do something.  At that point right wrong or indifferent, I made a decision as an adult and I am responsible for my own actions.

To implicate a child going through the stuff Laila is going through as a scam artist without any type of solid evidence was cruel and I will again use the word selfish.  Perhaps it was done with what was thought to be a good intention, but it was not well thought out.  This is a case where it would have been best to keep the opinion to yourself and let things be.

Again, I have no idea who is on the other end when I post on this forum, but since I am not worried about being manipulated I prefer to give people the benefit of the doubt.

That's my two cents at least........


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%
 

 


#15 jamietoftum@hotmail.com

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Posted 23 March 2012 - 03:38 PM

I appreciate it. And believe me I feel awful, imagine my surprise when trying to do a good deed my name has been drug through the mud.  As you stated, Im selfish...well whatever.  I just thought since I was called a LIAR I would share the email.  At this point I just dont care.  I just quoted what the hospital said.  I never passed judgement and hold out the hope that the truth would be found.  However I tend to choose to believe a reputable hospital rather than a post on the internet.  Even when I received the email, I posted several times that I hoped it was a huge misunderstanding and I wish Laila the best!



#16 CMLSurvivor

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Posted 23 March 2012 - 03:54 PM

I am going to put my Polyanna hat on and just say that we all need to step back and breath. I believe this has been a learning lesson for all on this board and that we now should start fresh and new. We can all say lessons were learned on all sides and that moving on would be in the best interest of all on this board.



#17 jamietoftum@hotmail.com

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Posted 23 March 2012 - 03:59 PM

I know I have learned never trust everyone on a website.  Good thing the NCMLS exists or I would be up a creek without a paddle or support.  I came here for that, heard of another and wanted to do a good deed and WHAM...Im called names, sent harassing emails, facebooks etc. 



#18 CallMeLucky

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Posted 23 March 2012 - 04:07 PM

I apologize if you feel I was hard on you directly, I would just like to clarify that I feel your actions in this one particular situation were not well thought out.  I make no judgement on you as a person, and my opinion is just that, my opinion.  So please understand I am not attacking you personally, I apologize if it comes across that way.  I think we should listen to CMLSurvivor and learn from this and move on.  I think it is unfortunate if you are getting harassed in any way, I believe you had good intentions overall.


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%
 

 


#19 jamietoftum@hotmail.com

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Posted 23 March 2012 - 04:21 PM

I did replay hastily and then let it go for several days.  The hospital was the one who asked for the links, and reviewed them and then come to the conclusion that there is NO patient at all in this hospital.  I was just passing the info I had received directly from a very perplexed hospital and a thorough investigation that no such patient exists.   I assume they alerted caringbridge and they investigated it also.  YOU all can do with it as you wish.  I just do not have the time, the energy or the health to continue with this matter. 



#20 Sunshine48

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Posted 23 March 2012 - 06:27 PM

Being that I do talk with Laila over email I do admit i feel she is real but I don't know. I would hope someone wouldn't do that but like luvmybees said she's never posted like help me help me and other things everyday when most attention grabbers do. Also I agree with callmelucky even if I'm emailing back in forth itch someone who is portraying to be something lse if they need support with cancer then it's not a waste of time :-/. I dont know whether the story is real or not she's been an inspiration to others including me so why ruin that feeling. I mean you say you talked to the hospital and I don't try and doubt you did or call you a liar saying you didn't, but your messages are the only ones being removed ya know?  I haven't personally see Laila call you a liar either e ven with this going on. You know I had no issues with you Jamie we've messages a few times on here but I think like cmlsurviver said let's just let it go. People who want to support her will others won't :). I am going to uofm and today I found out I am deemed "untreatable cml" and I'm going to be having a transplant at motts too. Whether she's there or not doesn't concern me, cause I know she's given me a lot of info of hat she's been through and it's preparing me... You never know maybe she lied about what hospital she was at because he is a minor and it is the Internet??? I dunno just a thought... Don't feel attacked and we are all a family here and look out for one another :-). It just the nature of how everyone here is :). Let's all just be there or each other and don't be dumb enough to send anyone money lol.

I just had to voice my opinion too I'm sorry I just like I said found that info out and I have been waiting for a donor but my specialist said sorry nothings working, I can't freeze eggs cause my platelets are too high so I'll never have kids and I'm only 26 plus now I'm having a transplant and I would hate to be thought of as not real when truly I need support the most right now.... I pray for everyone one here for peace and health :)






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