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Old 11-22-2012, 10:57 AM   #16
NEmel
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Hopefully she is feeling better quick!! Hope your family has a wonderful Thanksgiving!!!
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Old 11-23-2012, 04:44 AM   #17
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I sure hope Angel's toe is feeling MUCH better! That is the type of thing that makes your entire body feel badly. So happy the doctor was able to see her.
Thank you Judy It's already starting to look much better. Thank you for the adorable graphic. I hope your family had a wonderful day together.

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Hopefully she is feeling better quick!! Hope your family has a wonderful Thanksgiving!!!
Thank you Melissa I hope your family had a wonderful day together.
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Me - Christi DH - Tom DD - Angel 15 (wish kid)

Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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Old 11-24-2012, 12:37 AM   #18
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I hope she is feeling better today. I hope you had a wonderful Thanksgiving!

Jackie
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Old 11-25-2012, 04:34 PM   #19
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Thank you Jackie. We did have a very nice day together.

Angel's toes are looking much better.

It's now been 5 weeks that she's had to deal with her constant headaches.
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Me - Christi DH - Tom DD - Angel 15 (wish kid)

Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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Old 11-28-2012, 02:29 AM   #20
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I was feeling very apprehensive about going to clinic Thursday without knowing if they had switched her to a different Dr., so I called the lady that had offered to take of all of the details for us. She totally forgot about it. Feeling very discouraged.
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Me - Christi DH - Tom DD - Angel 15 (wish kid)

Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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Old 11-28-2012, 06:50 PM   #21
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Happy news to share.

I got 2 great phone calls today:

1. She's been switched to a different primary clinic Dr.

2. Her wish granter called to see when they can meet with her. It's tentatively set for Sat. 12/8



We go to clinic tomorrow, and it's been 3 weeks (the first time it's been that long), so we are very nervous about what her counts have done.
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Me - Christi DH - Tom DD - Angel 15 (wish kid)

Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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Old 11-29-2012, 05:14 PM   #22
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The new Dr. explains things very well, and genuinely seems to want to help.

We are getting a lot of conflicting information though, and need guidance in knowing what is actually correct.

This Dr. was not able to help her with the headaches either but at least he had possibilities, and explained why he didn't want to pursue those options at this time

He does not want her attending school (because of the headaches, not her ANC) until at least Jan. Depending on how things are in Jan., he said that he wants her to just attend half days for a while.

He expressed his concern that her central line has been in for so long, and feels it is a risk for infection. He was very surprised, and pleased, that Angel had already asked the other Dr. when she could have it removed. He is making arrangements for her to have her central line surgically removed in Dec. (out patient).

He feels her ingrown nail does need to be surgically removed, but does not want to pursue it until after the central line is removed.

Her ANC dropped to 840, which is disappointing, but it wasn't as hard to deal with, because the new Dr. lowered the cutoff for her restrictions from 1000 to 500.
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Me - Christi DH - Tom DD - Angel 15 (wish kid)

Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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Old 11-30-2012, 05:55 PM   #23
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I can't even begin to describe how we're feeling right now.

After talking with the new Dr., researching on my own online, and speaking on the phone with a highly respected Dr. that has much more experience with aplastic anemia, we now know that a majority of what took place this year should never have happened, which is very hard to accept.

First, the GOOD news - Angel no longer has SEVERE aplastic anemia. She does still have aplastic anemia, and will until she reaches 100,000 on platelets (currently 57000) and is consistently over 1000 for ANC. That may or may not ever happen. We are still working out exactly what this means as far as the precautions that still need to be taken to keep her safe. This does not change the fact that she still needs to have a bone marrow donor match. Relapses do occur.

The bad news: We have been getting inaccurate information from the time of diagnosis, and her Dr's lack of understanding of aplastic anemia has caused Angel (and our family) to endure so much more than she ever should have.

Angel actually met the criteria of no longer being SEVERE in MAY, yet we were continuously told at clinic visits through the end of Aug. that the treatment was not successful. We went from that, to suddenly being told last month that she was "cured" - neither of which is accurate.

As to everything that happened that never should have, there were many, but here are some of the major ones.

Angel's life was put on hold and she was basically homebound. She was almost always on dietary restrictions, and couldn't care for her gerbils. NONE of that was necessary once she was no longer severe. She could have been outside, and even gone to camp. Her central line should have been removed, and she could have gone swimming. There were a few things she still wouldn't have been able to do (and still can't), but life would have been much easier.

The biggest thing is that we did not have to move. Yes, we needed temporary housing for a few months, but then we could have moved back home. Angel had to give up so many of her belongings to move here, which was extremely hard on her. We now have a mortgage, put a lot of money into the new house, and still have the old house to deal with and the costs from it, not to mention the stress that is still overwhelming. Most importantly, we are simply not happy at the new house.

All of this was very hard to deal with when we thought it was all because of her condition. Finding out that all of this happened because Drs. gave us incorrect information, has us reeling. It wasn't that we misunderstood - we asked extensive questions, especially concerning having to move from our home.
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Me - Christi DH - Tom DD - Angel 15 (wish kid)

Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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Old 12-01-2012, 06:31 PM   #24
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Quote:
Originally Posted by angel's momma View Post
I can't even begin to describe how we're feeling right now.

After talking with the new Dr., researching on my own online, and speaking on the phone with a highly respected Dr. that has much more experience with aplastic anemia, we now know that a majority of what took place this year should never have happened, which is very hard to accept.

First, the GOOD news - Angel no longer has SEVERE aplastic anemia. She does still have aplastic anemia, and will until she reaches 100,000 on platelets (currently 57000) and is consistently over 1000 for ANC. That may or may not ever happen. We are still working out exactly what this means as far as the precautions that still need to be taken to keep her safe. This does not change the fact that she still needs to have a bone marrow donor match. Relapses do occur.

The bad news: We have been getting inaccurate information from the time of diagnosis, and her Dr's lack of understanding of aplastic anemia has caused Angel (and our family) to endure so much more than she ever should have.

Angel actually met the criteria of no longer being SEVERE in MAY, yet we were continuously told at clinic visits through the end of Aug. that the treatment was not successful. We went from that, to suddenly being told last month that she was "cured" - neither of which is accurate.

As to everything that happened that never should have, there were many, but here are some of the major ones.

Angel's life was put on hold and she was basically homebound. She was almost always on dietary restrictions, and couldn't care for her gerbils. NONE of that was necessary once she was no longer severe. She could have been outside, and even gone to camp. Her central line should have been removed, and she could have gone swimming. There were a few things she still wouldn't have been able to do (and still can't), but life would have been much easier.

The biggest thing is that we did not have to move. Yes, we needed temporary housing for a few months, but then we could have moved back home. Angel had to give up so many of her belongings to move here, which was extremely hard on her. We now have a mortgage, put a lot of money into the new house, and still have the old house to deal with and the costs from it, not to mention the stress that is still overwhelming. Most importantly, we are simply not happy at the new house.

All of this was very hard to deal with when we thought it was all because of her condition. Finding out that all of this happened because Drs. gave us incorrect information, has us reeling. It wasn't that we misunderstood - we asked extensive questions, especially concerning having to move from our home.
Hi angel's momma and girangel. Just joining the thread. I am so happy to hear that you have switched medical teams and are getting accurate information. Our kiddo has also had lots of unnecessary hospital stays because of mistakes made by the experts.

Buglet is also very susceptible to headaches. We have to monitor diet and even lighting to help to reduce duration and frequency. No real help from physicians on figuring it out. We had to keep a record of everything to notice a trend. After I presented that information we did get confirmation on the need to avoid artificial lighting for too long.

You are a very inspirational family and we can't wait to read more.
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Old 12-02-2012, 12:14 AM   #25
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Christi,
I am so incredibly sorry for all your family has had to endure so unnecessarily. This medical journey is hard enough without having to uproot your entire life and have added expenses that you didn't have to. While I am happy Angel is "better" than thy have thought, it doesn't help the sting of all you have feared and gone through.

My prayer is that the new medical information allows your family to reclaim your lives and that this wish trip will bring happiness and healing! You all deserve that!
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Old 12-03-2012, 12:02 AM   #26
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Christi
Sorry to hear about the the conflicting information. It is good that you changed doctors. As a parent we have to be our childrens voice. So many times I didn't agree with what doctors said and just kept fighting. You are the parent and know your own child. Good news about the granters coming!!'
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Old 12-04-2012, 02:41 AM   #27
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Originally Posted by OhanaDreams View Post
Hi angel's momma and girangel. Just joining the thread. I am so happy to hear that you have switched medical teams and are getting accurate information. Our kiddo has also had lots of unnecessary hospital stays because of mistakes made by the experts.

Buglet is also very susceptible to headaches. We have to monitor diet and even lighting to help to reduce duration and frequency. No real help from physicians on figuring it out. We had to keep a record of everything to notice a trend. After I presented that information we did get confirmation on the need to avoid artificial lighting for too long.

You are a very inspirational family and we can't wait to read more.
Thank you Sorry Buglet has had to deal with so much. I'm glad you were able to figure what some of what was causing the headaches. So frustrating that you had to figure it out.

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Christi,
I am so incredibly sorry for all your family has had to endure so unnecessarily. This medical journey is hard enough without having to uproot your entire life and have added expenses that you didn't have to. While I am happy Angel is "better" than thy have thought, it doesn't help the sting of all you have feared and gone through.

My prayer is that the new medical information allows your family to reclaim your lives and that this wish trip will bring happiness and healing! You all deserve that!
Thank you Judy We very much appreciate your prayers and support. I know how hectic your life is, yet you always make time, and know just what to say. I'm so blessed to have found your thread. Longing for RL to slow down enough that I can do more than just read it.

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Christi
Sorry to hear about the the conflicting information. It is good that you changed doctors. As a parent we have to be our childrens voice. So many times I didn't agree with what doctors said and just kept fighting. You are the parent and know your own child. Good news about the granters coming!!'
Thanks Melissa Waiting to hear that you've gotten good news.
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Me - Christi DH - Tom DD - Angel 15 (wish kid)

Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM
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Old 12-07-2012, 12:44 AM   #28
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Angel will be having a minor outpatient surgery 12/18 to remove her central line. It will be such a relief to not have to care for it anymore, and she will be able to swim again once it's healed.
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Me - Christi DH - Tom DD - Angel 15 (wish kid)

Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
CRUISE 2013 Apr. 14-18 Disney DREAM

Last edited by angel's momma; 12-08-2012 at 03:44 PM.
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Old 12-07-2012, 07:33 PM   #29
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So glad to hear that she gets it removed! Praying it all goes well.

Jackie
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Old 12-08-2012, 12:58 PM   #30
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We will be saying an extra prayer for Angel on the 18th. So exciting. Another step in the right direction
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