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

[angel's momma]

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.

 

[angel's momma]

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.

 

[angel's momma]

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.

 

[OhanaDreams]

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.

 

[blessedmom4]

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!

 

[NEmel]

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!!'

 

[angel's momma]

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.

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.

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.

 

[angel's momma]

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.

 

[Lilfoot93]

So glad to hear that she gets it removed! Praying it all goes well.

Jackie

 

[OhanaDreams]

We will be saying an extra prayer for Angel on the 18th. So exciting. Another step in the right direction

 

[angel's momma]

Thank you both for your prayers - we greatly appreciate it.

 

[blessedmom4]

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.

That is WONDERFUL news!! And a great present for Angel. I know it has been hard, especially discovering so much was unnecessary. Praying for happy days and accurate diagnosis from now on.

 

[NEmel]

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.

Glad she is getting her line out! Will be thinking of you all. How did the meeting go with her wish granters??

 

[angel's momma]

Thank you so very much Judy & Melissa.

Thanks for asking about the wish granters. I've been wanting to post about it, but RL has been crazy, hope to get to it soon.

 

[girangel]

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.

 

[angel's momma]

When we found out that the wish process would actually be starting soon, we started gathering cruise information here on the DIS, and we found the Wish Trippers thread. We found out that Disney only sponsors 4-night Bahamian cruises on the Disney Dream for Make a Wish. Angel was a little disappointed, but decided to go ahead and make her specific wish and see what happens. If her 1st wish is not granted, she will still be extremely happy if she can go on the Disney Dream, which she made her 2nd wish.

Since we still have to limit visitors in our home, we met the wish granters at a church in town. They were very nice, but I'm not sure if some of the things they said is accurate.

They said that we should know if her wish will be granted before Christmas, and that she should be able to have her first wish. I know that it does vary from chapter to chapter, but I know that Melissa is still waiting to hear about Carter's wish because cruises take longer to approve, and I've already mentioned about the Dream being the usual MAW cruise.

Angel would like to be able to cruise in May, so we assumed 2013 would definitely be out of the question, but her wish granters said we may be surprised, and that we should start the process of getting passports just in case (I have to get a certified birth certificate from out of state first).

We are very excited that Angel was able to make a wish, but DH & I are both rather nervous about the cruise though.

 

[Lilfoot93]

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.

What an amazing wish! I sure hope it is granted!

Jackie

 

[NEmel]

YEA!! That is the iternery we like as well, I want to see Cozumel. I have to go get the boys passports as well today. I have seen some wish trips that do 7 day cruises, so I think it just depends on the chapter. Lets hope you hear something quick!

 

[angel's momma]

Thanks Jackie & Melissa.

I hope your family gets that itinerary too Melissa.

I can't believe I forgot to post our exciting news - Angel hasn't had any headaches since Sunday night. We're very hopeful that they won't return, and that she can return to school when 2nd semester starts 1/7.

We've had a very hard day today. We had a lot problems with one class where the teacher consistently did not give her all the material she needed, and she did very poorly because of that. She is a very good student, and this is the only class that was problematic. I have been trying to resolve the issues for over a month now, and the school gave the final answer today, which was clearly not in Angel's best interest. She is stuck with a grade that she did not earn, and it will negatively affect her GPA.

 

[NEmel]

Thanks Jacike & Melissa.

I hope your family gets that itinerary too Melissa.

I can't believe I forgot to post our exciting news - Angel hasn't had any headaches since Sunday night. We're very hopeful that they won't return, and that she can return to school when 2nd semester starts 1/7.

We've had a very hard day today. We had a lot problems with one class where the teacher consistently did not give her all the material she needed, and she did very poorly because of that. She is a very good student, and this is the only class that was problematic. I have been trying to resolve the issues for over a month now, and the school gave the final answer today, which was clearly not in Angel's best interest. She is stuck with a grade that she did not earn, and it will negatively affect her GPA.

AWESOME news about the headaches!!!! Hope everything with school works out!