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Old 03-07-2013, 08:11 AM   #226
Kktraylor
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Originally Posted by angel's momma
Thank you Gail

Yes, Chewy is doing much better today Last night I was able to get the outside of his ear cleaned up (not an easy task, he was determined to take the Qtip from me). After that, he stopped constantly scratching his ear, and it looks much better. There is definitely a mass just inside his ear though. Since it wasn't an ear infection, the meds wouldn't have done any good.

It doesn't seem possible that the trip is just a little over a month away. I really was planning on starting the packing today , but I had other things that needed to be done first.

Tomorrow is clinic. We're all pretty anxious to see what her counts are. Hoping & praying that both her platelets & ANC have gone up. Last month we only saw a nurse, and she emailed the Dr. a few questions we had. He never emailed us back. We had asked her first Dr. the same questions last fall, and never got any answers, and had asked this Dr. when we first switched to him in Nov., and we still don't have any answers (it was about the HLA testing that was done in Memphis a year ago). I did think about calling a couple weeks ago, but decided not to since there was so much going on, but it's very frustrating.
Good vibes...let us know how it goes.
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Old 03-07-2013, 04:34 PM   #227
angel's momma
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Thanks Melissa & Kristy

Her ANC is unbelievable - 3630, and NORMAL It was 890 last month.
It's the highest it's been since last May, and that was when she was still on the neupogen shots to stimulate it (when the shots were stopped, the ANC plummeted).

Another Praise - The Dr. agreed with us that the roller coasters at wdw aren't as rough as they are at some other amusement parks, and he said that even though her platelets are under 100,000 (84,000 today, up just a bit from last time) she can ride them as long as we check them out first just to be sure that they do meet the criteria.

The Dr. was able to show me the original paper from Memphis about the HLA typing done last Feb., which confirmed what we thought we knew. I'm glad he had the paper, because some of the stuff he was telling me about donor matching is way off from what we were told in Memphis. Since the info we were told while we were in Memphis came directly from the transplant Dr., we will stick with that info. It's discouraging that we keep getting misinformation from the clinic Drs. though, and that they don't really understand aplastic anemia very well.


Next clinic is Thurs. Apr. 11
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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 03-07-2013, 08:14 PM   #228
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soooo exciting to hear about her counts being up!!! sorry about all the different information you are getting. that has to be so frustrating!!!
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Old 03-08-2013, 08:58 AM   #229
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YAY for great counts! Maddie has had bone marrow suppresion with her disease, so we know the ins and outs of neutropenia! So happy that Angel's counts are on the upswing!
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Old 03-08-2013, 03:37 PM   #230
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Thanks ETHANSMOMMA & Mom2M07

Sorry Maddie has had bone marrow suppresion too, and has had to deal with the neutropenic restrictions.



Last weekend Angel was catching up on some of the PTRs, and was showing me shirts that Amy, Dana, & Melissa had recently made (even though I'd already seen them myself ). I've thought about trying to make or buy her something special, but our printer ink is expensive & I wasn't sure how much a decal would use; and etsy prices are reasonable compared to store prices, but we very seldom buy clothes that aren't on clearance or from yard sales. I started to explain this to her, but I didn't have to, she said she knew, and she was very happy that Melissa made her the wish kid shirt. It still bothered me & DH.

A couple of days later, I was drawing some pictures on packages to mail, and I realized that I could probably paint designs like that on a couple of shirts for her. I told her I couldn't promise anything, cause I needed to price materials, and figure out how to transfer my drawing to the shirt, but I was excited, and so was she. She picked 2 designs, one for the cruise, and one for wdw. I had already drawn the cruise ship to use for our FE. We had seen the other design in one of the older PTRs, but I couldn't find it. I posted on the Disboutiquers thread, and they knew exactly what I was looking for. Thurs. night I sat down to draw it, because we were going to town Sat. & I could get the paint, etc. (since we're so far from town, I only go in about once a month to get groceries for the whole month, and DH picks up stuff like bread & milk after work). I haven't drawn much in years, but I drew the pictures on the packages very easily, which is the only reason I had the idea to draw the shirts. The design for her shirt didn't happen easily at all, and after much erasing & re-attempts, I was in tears when DH got home, because I wanted so much to be able to do this for her. I decided to wait & try again the next day.

Friday's attempts didn't go any better, and I was very down & frustrated. I needed a break from trying, so got on the DIS, and found a PM from billwendy that said that the Big Give ladies would like to send some pixie dust to Angel, if I thought that she would like that. I can't describe how I felt when I read that, and how much of a blessing it is to our family. One of the hardest parts of the past year was seeing how lonely Angel was in isolation, and I would literally plead that people would contact her in any way - even a "poke" on FB would cheer her up, and yet there was seldom any response to my pleas. To have a group of people that don't even "know" her, want to send her something, it means more than I can say, and I knew that it would make Angel extremely happy. We were very excited to be able to start contributing in a small way towards the gives in Dec., so I knew that the group was already working on other gives, so to have them take time to send Angel pixie dust meant even more to me. I could barely reply to Wendy's PM, because I was crying so much. I was in a much better mood, and determined to get my drawing right so that I could buy the materials the next day. Nope, it just wasn't working at all. I took another break, and found another message from Wendy, asking some questions. As I read it, I was flooded with emotions again, because I was already overwhelmed knowing they would be sending pixie dust, and now I was realizing that I had misunderstood, and they wanted to make her some things too. I was so excited that I called DH, and I should have waited, because I was crying so much that he couldn't understand me, and he thought something was wrong. When he could finally understand me, he was overwhelmed with gratitude too, and also pointed out to me that this is probably why my plans to make Angel's shirts weren't working out - God had a much better plan.

I have been bursting to share the news of this amazing blessing for a whole week, and felt bad that my posts over the weekend were so negative, when we had this amazing blessing that was counter balancing every thing else. A package & a card arrived today. We live in a tiny town & don't have home mail delivery, so DH usually just gets the mail on the way home from work. Last night there was a yellow card, meaning that we have a package, so I went up to get it today. DH calls me every day on his lunch break , and the first thing he asked today was if the package was from the Big Give.

We've had to make a lot of changes to the way to we do things since Angel's diagnosis (many of which are complicated & time consuming), and one change is that we open packages in the garage, because it's amazing how dirty they usually are, and we try to keep the house as clean as possible. I wanted Angel to be able to "open" the Big Give packages though, so I opened the box in the garage, and put the contents in a storage container for her. I picked up the mail at 11:30, and I'm as bad as Trevor's sisters , anxiously waiting for Angel to get home from school so that I can see what she got. This post took a long time to type, mainly because I keep crying through it , and it's just about time for her to get home. Will be back later with pics.
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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 03-08-2013, 03:52 PM   #231
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I'm so happy and excited that Angel was chosen for the Big Give!!
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Old 03-08-2013, 10:07 PM   #232
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Thank you Tracy

Two Big Give items arrived today


We decided that I'll post the pictures & a few comments, and then Angel will make her own post with all of the descriptions.

Sorry this one is blurry.


The first was a beautiful card from p00h4me, with a spectacular surprise.




Thank you so much Gail for this amazing opportunity!
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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 03-08-2013, 10:29 PM   #233
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The next package was from disneyanytime.

The bag is the perfect size for her Kindle

I was surprised that I was able to get pictures with such good smiles from her. Normally her pictures look like the last one in this row, because she doesn't like her teeth showing, but I just took a bunch of pictures & she didn't have time to make sure that her teeth weren't showing in some of them.

It took her a minute to figure out what it was.


Thank you so much Kristi for the bag, vinylmation, and magnets!
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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; 04-06-2013 at 09:48 PM.
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Old 03-08-2013, 10:29 PM   #234
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It was exciting to come home from school and find some things that had come today from the Big Give. It's fun to get mail.

Thank you to p00h4me for the wonderful animal card. I was amazed that the printing was personalized, because I never knew you could do that. I read it and was very excited to find out that we get to go to a special lunch at a restaurant called Sanaa in Kidani Village at Animal Kingdom Villas, and go have lunch with an animal specialist! I had never even heard that this existed until now and I'm very excited to be able to go do this! I also can't wait to try the food - it looks wonderful!

Thank you to disneyanytime for the wonderful pixie dust. I was surprised to see a cute little bag with Mickey balloons. Inside the bag was a vinylmation. I thought it was fun to try to guess which one it might be. I was very happy with the one that I got. I was very excited to get my first actual vinylmation - I've been collecting the pin versions for a while. I liked how the little arms and the head moved. I then pulled out a mysterious item. I couldn't quite figure out what it was at first. I then realized that it was a really neat magnet board. There were some really fun foam-like magnets for it, and a cruise magnet. They'll be great for our stateroom door.
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Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Previous trips: 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
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Old 03-09-2013, 12:45 AM   #235
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Congrats on the Big Give!!! What wonderful Big Gives you got!!

Jackie
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Old 03-09-2013, 01:49 AM   #236
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I know I am really late here but I didn't realize that you had the trip report. I read the first post and cried as I read it.


I look forward to following along.
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Old 03-09-2013, 02:11 AM   #237
angel's momma
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Thank Jackie

Thank you Michele Sorry it made you cry.
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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 03-09-2013, 05:41 AM   #238
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The Big Gives started! So glad that the card arrived for Angel. Loved seeing the smiles on Angel as she opened her Big Gives! You know Angel that I hadn't heard about Sanaa before I started to try to find something to do for your Big Give. I read that you love giraffes and want to work at the Animal Kingdom someday. I was pretty excited to find out about Dine with an Animal Specialist and the reviews I read. The people really enjoyed the meal and talking with the Animal Specialist. I called the Disney dining reservation to make sure they had space while you were there and they did (much to my relief)! You see, I tried checking myself online to see if there were any openings and it kept coming back that there was no opening. I'm glad I called the dining reservation number to confirm if that was true.

I like to make personalized cards from Hallmark cards and I have fun putting pictures and adding my own words to them.

I did find someone who reviewed a recent visit in February and you might want to read about their experience to get an idea of what to expect.

http://www.extrawdwmagic.com/?p=7322

So Angel, this is your opportunity to talk with the Animal Specialist and make a contact for a possible future employment ! I'll love to hear all about your own review of your experience when you get back. Have a great time on your wish trip!

Also loved the pixie dust from disneyanytime!
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Old 03-09-2013, 12:48 PM   #239
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It was a good type of crying.
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Old 03-09-2013, 02:54 PM   #240
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She poured over every detail of the card Gail , and loved that the lobby looks like a tree on the map. She rarely posts on FB, but couldn't wait to post a link to the Dine with an Animal Specialist. Thank you for not giving up when when it said there wasn't any openings. This will be a perfect way to spend our last day.



Hugs Michele And sorry I misspelled your name in the other post. I fixed it.
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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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