Angel's Make a Wish DREAM Cruise/extended days at wdw 4/13-25 PTR :)

[angel's momma]

Thanks Melissa.

Monday we had clinic, and Angel's ANC went from 840 last time, to 2130. Hgb went up a little more too. No improvement on platelets, but at least they didn't drop.

Tuesday she had her central line removed. Monday night I realized that we didn't get the call we were supposed to get that day to go over the specifics for her surgery. Admitting did call on Friday to pre-register her, but the surgeon's nurse was supposed to call Monday. We got to registration at 7:30 (we live an hour away), got checked in, and were given her itinerary. That's when I saw that the surgery was scheduled for 1:30, not 9:30 like we had been told. I do realize that they sometimes have emergencies come up that push the whole schedule back, but that's not what happened - they knew about the change in advance but didn't call us. Now we were there much earlier than we needed to be, and Angel had fasted since midnight (she actually set the alarm so she could get up & eat at 11 ). She wasn't hungry, but was already thirsty & would have to wait 4 extra hours. I asked if we could leave the hospital & come back in a few hours, but they didn't want us to do that. They made some calls, and said they would try to bump her up, but couldn't make any promises. They did take her back to peds pre-op rather quickly, and it was really nice, and had a TV for her to watch.

Angel was excited to finally be having the line removed, but she was pretty nervous about the IV, and then having to have her blood drawn normally again (she's only had one other IV, and a blood draw - both the day of her diagnosis). 2 nurses came in to do the IV, and both said that Angel had nothing to worry about, because they could see that she had excellent veins. Angel said it didn't hurt as much as she had expected. What she didn't see, that I did, was the nurses sharing concerned looks, and shaking their heads. The IV was in, but wasn't working. The nurse couldn't get a blood return, so she decided to flush it, and that's when it really got painful, so they removed the IV. The other nurse said she'd do the 2nd one. The nurse had some difficulty getting it in, and the nurse & I could tell that Angel was in a lot of pain, but she didn't complain at all. There was a blood return this time, but the nurse couldn't get it to stop bleeding, and then her arm became swollen, so the nurse had to remove the IV. The nurse went and got some other staff, and said that there was no way anyone was going to try a 3rd one while Angel was awake, because she had been through enough already. They decided that Angel's weight was low enough that they could use some options they usually only use on younger children. Then the anesthesiologist came in & told us she was very concerned about removing the line at all, because they may not be able to draw blood through Angel's veins. She asked us a bunch of questions, and when we told her that the clinic Dr. had just told Angel yesterday that she could chose to have her blood drawn with a finger prick, that was enough for her to let Angel have the line removed. She said that she could actually use the line to put Angel under, then they could put in the IV for the 3rd time while she was asleep.

This is her arm after 3 IV atttempts:

This is her line:

Nurse told us that it would probably be around 11 when they could get her into surgery, which was better than 1:30.

5 minutes later the Dr. came in and said they were ready for her. He said that there was a possibility that scar tissue may have grown around the line cuff, and that would determine how long the surgery would be. They took her at 9:30 - which is when it was originally scheduled.

Surgery only took about 5 minutes. Dr. came and told me that there wasn't any scar tissue, and they hadn't even had to use any stitches.

She was really happy that they brought her juice in recovery in a Disney Cars Tervis style cup with a twisty straw, that she could take home.

It was really nice not to have to do dressing changes this week, after having done them 3 times a week for 10 1/2 months.

I know it's a month late, but Angel had wanted me to post a Thanksgiving picture, and I didn't get the pictures on the computer until now. Here she is playing Pin the Hat on the Turkey. She's had the headband she's wearing since she was 2, and wears it every year.

 

[Irelandsmom]

Hi Angel and Angel's Mom! My daughter, Ireland, had a MAW trip too on a Disney Cruise. We did the Disney Dream in 2011. Our wish trip granters came by the house in December and then scheduled the trip in April- so I'm pretty sure they can schedule you in May without a problem. Also, we did have a few problems with our wish granters - mostly just mis-information and not returning phone calls for months. Our wish granters were college kids and definitely new to the process. When the wish granters came to the house they told my daughter that because she was an only child she could bring a friend on the cruise or both of her grandparents. Well she chose her grandparents and was so excited to be able to call them and tell them the good news after the wish granters left. About 2 weeks later the wish granters called and said Ireland could only choose one grandparent to go on the cruise- she was heartbroken! How could she choose only one after being told that both could go, and now which one???? Lots of crying and disappointment! I called our local chapter director because at this point I was getting really frustrated- so much of the information we had been given had changed and now the trip was causing my daughter more grief than joy! Anyways, they did allow both grandparents to come. All of this to say that although MAW is an awesome organization and we LOVED the trip, the granters are volunteers and can sometimes be the opposite of helpful So if you have questions with the process- call the PAID staff...you will get the answers you need! Also, don't be afraid to speak up. I know that it is difficult because this is a gift from MAW to your child and you feel like you really shouldn't direct the gift-givers on how to do their jobs- but again, many of the wish granters are fumbling through the process and don't know what they are doing. I'm pretty sure our wish-granters were volunteering for college credits as some sort of internship program, not because it was their life-long dream to help kids with their wishes But just so you know, when the details are ironed out- it will be smooth sailing when you get on the ship- DCL knows how to make a MAW trip the best! If you have any questions about a DCL MAW trip - I will be happy to help!

 

[Maryrn11168]

I met with my wish granters Saturday. They seemed very nice.

My wish is to go on a 7-night Western Caribbean cruise on the Disney Fantasy.

When I started researching Disney cruises, I didn't realize there were so many different itineraries! I picked this specific cruise because it offers an excursion on Grand Cayman for a dolphin encounter and turtle farm that I would really like to do. The Fantasy also offers special shows at the beginning and end of the cruise, and the Muppet interactive activity. There's also the special animator's night at Animator's Palatte on the Fantasy. I thought this specific cruise is the perfect cruise for me.

My son's wish was a Disney- and Make a Wish granted him a 7-night Eastern on the Dinsey Magic. I know what gets granted differs by chapter, but 7 nights do get granted. He loved it and we all had a great time!

 

[Irelandsmom]

I forgot to put in a link for Ireland's trip report on the Dream, if you are interested:
http://irelandsmakeawishtrip.blogspot.com/

 

[NEmel]

Sounds like surgery was quite the ordeal Glad that it went fast and everything worked out! Have you applied for passports? We did ours on the Dec 12th and I just got notice that they are almost done and should be here by the 29! Yea something the goverment does fast. :cool1

 

[angel's momma]

Hi Irelandsmom Nice to see someone from IL. So glad Ireland got her wish. So sorry that there was misinformation from the wish granters, and that it caused your daughter heartbreak. So glad they allowed both grandparents after all. Thanks for the link - I look forward to reading about the trip, but it will probably have to wait until DH & Angel return to work & school - we are so excited that they are both off for 2 weeks.

My son's wish was a Disney- and Make a Wish granted him a 7-night Eastern on the Dinsey Magic. I know what gets granted differs by chapter, but 7 nights do get granted. He loved it and we all had a great time!

So glad that his wish was granted, and that you had a great time.

Sounds like surgery was quite the ordeal Glad that it went fast and everything worked out! Have you applied for passports? We did ours on the Dec 12th and I just got notice that they are almost done and should be here by the 29! Yea something the goverment does fast. :cool1

Yay that you'll have your passports soon. We haven't applied yet, but have started the birth certificate process. I had to send for mine from CA, and had to have a notary sign the paperwork. Got that all done & sent. DH had to go to another county to get his, and our marriage certificate, and got that done last week too. Angel's is driving us crazy - when we were sent to St. Jude in Memphis in March for a bone marrow consult, we were told we needed her birth certificate (turns out we didn't), so DH made a special trip to get one before we left. He went ahead & got 2. Now we can't find either of them. We were living in a temporary house at the time, and have since moved to our new house, but took some things from the temp house back to the old house at the time of the move. We have looked all over both houses several times, but obviously we're overlooking something. I'm guessing they're both in the same place. May have to go get another one - that's a sure way to find the ones that are missing.

 

[blessedmom4]

I am so far behind and completely missed the CL removal. Sorry it was a bit traumatic on the IV front (been there, done that too many times in the past nine years). It never gets easier.

I hope the birth certificates are found quickly and everything becomes clearer and details are worked out quickly.

Two weeks off together, what a HUGE blessing! May all of your dreams come true and may you have a truly blessed Christmas!

​

 

[angel's momma]

Thank you Judy We wish the same for your family.

 

[NEmel]

Merry Christmas Christi, Angel, & Tom!! Hope you have a wonderful day and a great couple of weeks off together!

 

[angel's momma]

Thank you Melissa

 

[Lilfoot93]

Merry Christmas!!

Jackie

 

[blessedmom4]

Thank you Judy We wish the same for your family.

Thank you Christi!!

Just waiting on the children to wake up and sharing more holiday wishes.

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[angel's momma]

Thank you Jackie & Judy

 

[angel's momma]

Angel's wish granter just called to say Angel's wish is being granted. She didn't have specifics, but said she knew it was a 5 (we know that isn't the Fantasy). We are very grateful that she is being granted a wish, but it was still very disappointing to find out that she won't be able to have her specific wish. We took it harder than we expected.

 

[angel's momma]

I've been asked about what I meant about it being a 5 - it's either days or nights, we're assuming days.

Angel wasn't trying to get a longer cruise, she chose this one based on what it offered. It's just discouraging, cause they grant much more extravagant wishes, and even encouraged her to ask for something like Australia. They say that just knowing they can make a wish brings happiness & hope to the child (and it did - researching the cruise activities made her happy, and helped her get through all of the disappointments all summer). What they don't say is how it feels to find out that you don't get what you wished for (broke my heart when she told me she wishes she had never made a wish, because it hurts so much now). Angel was recently left out of several other things (not wish related), so we were already feeling like we didn't matter.

 

[Lilfoot93]

Glad to hear she gets a cruise... Sorry to hear it isn't the one she wanted. (((HUGS)))

Jackie

 

[blessedmom4]

I've been asked about what I menat about it being a 5 - it's either days or nights, we're assuming days.

Angel wasn't trying to get a longer cruise, she chose this one based on what it offered. It's just discouraging, cause they grant much more extravagant wishes, and even encouraged her to ask for something like Australia. They say that just knowing they can make a wish brings happiness & hope to the child (and it did - researching the cruise activities made her happy, and helped her get through all of the disappointments all summer). What they don't say is how it feels to find out that you don't get what you wished for (broke my heart when she told me she wishes she had never made a wish, because it hurts so much now). Angel was recently left out of several other things (not wish related), so we were already feeling like we didn't matter.

I am so sorry Christi. We have been there in similar fashion and it makes you feel unthankful/ungrateful. I get it. It is isn't that you aren't thankful, you just wonder why some people seem to matter more. It does make you feel disappointed, you are human. I will say I have never heard of a wish cruise longer than 4 nights. They might offer them, I just have never heard of them. Would Angel want to change her wish? Is Australia (or somewhere else) something she would want? I hope once the initial disappointment abates Angel will be thrilled.

 

[NEmel]

Christi~ Again I am so sorry. Wanted to let you know I am thinking of you all and hope that you get dates so Angel can do some more research. I am hurting for you all. Hugs!!

 

[angel's momma]

I am so sorry Christi. We have been there in similar fashion and it makes you feel unthankful/ungrateful. I get it. It is isn't that you aren't thankful, you just wonder why some people seem to matter more. It does make you feel disappointed, you are human. I will say I have never heard of a wish cruise longer than 4 nights. They might offer them, I just have never heard of them. Would Angel want to change her wish? Is Australia (or somewhere else) something she would want? I hope once the initial disappointment abates Angel will be thrilled.

Thank you Judy. After reading here, we knew it was unlikely that she'd get the Fantasy, and we truly never thought we'd feel this way, but I guess we were really hoping for it. It's just been a year full of disappointments. It's rare, but we have seen reports on MAW's FB page of kids that went on the Fantasy. A Disney Cruise is her wish, and we know that she's going to love it. It would have been much easier if she had been able to make her wish in Feb. like she should have (they forgot to submit her name) because she would simply have said Disney Cruise, but she spent so much time researching & picking out this specific cruise.

Christi~ Again I am so sorry. Wanted to let you know I am thinking of you all and hope that you get dates so Angel can do some more research. I am hurting for you all. Hugs!!

Thank you Melissa. Many hugs for your family as well.

 

[angel's momma]

Today is Angel's birthday.