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Old 08-09-2010, 07:21 PM   #1
fulseasmama
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Bibbiti Bobbiti - Our Boo gets a MAW Trip to meet the Princesses Feb 1-7

After a bit of lurking around the DIS Boards I am jumping in and getting a PTR started for my daughter's upcoming MAW trip. I am so excited for all of us to have this opportunity and it really feels like a dream come true after some very stressful times as a family which I know any MAW family can understand. I suppose first of all I should introduce our family:



Our Wish Kid and Leukemia Survivor - Our own little Boo Chelsea (3)


Here she is during treatment - Summer 2008

Current Picture of our all smiles girl - Spring 2010


Fantastic Big Brother - Fuller (4 and he would tell you soon to be 5)

Our guy Age 3 Winter 2009

Ready for his last day of school June 2010


Great Husband and Papa to our kids - Chris

Celebrating Papa's Birthday Jan 2010

Enjoying some time in Seattle


Then there is Me Fuller and Chelsea's Mama - Erika

Me and my little pirates July 2010

Celebrating my Birthday this month with my boo


We live in the Pacific Northwest and have never been to Disneyworld, Universal or Seaworld so we have a world of adventure ahead of us. I am looking forward to making plans for this once in a lifetime vacation.

In my next post I will tell our Chelsea's story and how she came to have the opportunity to Make a Wish.


And so our adventure begins.....
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Erika (Mama of 2 Great Kids) Chris (Fantastic Husband and Papa of 2 Great Kids)
Fuller (Great Big Brother - Age 5) Chelsea (Awesome Little Sis, Leukemia Survivor and Wish Kid - Age 3)
PTR--Bibbiti Bobbiti - Our Boo gets a MAW Trip to meet the Princesses Feb 1-7
Bibbiti Bobbiti Make A Wish Helps our Boo Have Her Princess Wishes Come True!!!

Last edited by fulseasmama; 10-08-2010 at 01:20 AM.
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Old 08-09-2010, 10:21 PM   #2
Mom2mitokids
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Hi Erika,

You have a beautiful family. I can't wait to hear Chelsea's story and get to know you. We are waiting for our MAW dates. We are hoping to go in March.
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Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee
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Old 08-11-2010, 06:06 PM   #3
fulseasmama
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How our Boo came to get the oppertunity of a Wish Trip

Our story really starts back a few years. I think it is really amazing what a difference a day can make in your life. On January 10, 2008 we took Chelsea to the pediatricians because she had been vomiting and had severe diarrhea. Honestly she had been sick on and off the entire month before but it was all fairly routine babies getting sick things so we kept being sent home with our very fussy baby. They told us she seemed dehydrated and that we should take her to the ER at Legacy Salmon Creek Hospital to get fluids and she might have to stay the night there. We had not been there very long when the doctor came in and told us "I don't know how else to say this but your daughter has an extremely high white blood cell count and we think she may have leukemia." Honestly at that moment I did not even know what that meant and I remember looking at my husband and asking if she was going to live. I get tears thinking about it today as I type.

At that point she had to be transferred via ambulance to a larger children's hospital in our area. Needless to say our entire world seemed to stop that day. After arriving at the PICU she had many tests done to complete the diagnosis. By the next morning the doctors thought she may have AML or JMML and they just were not sure yet. Since her white blood cell count was above 400,000 (regular wbc would be around 10,000)they needed to do something fast so she was started on Chemo around 10PM our second night there. Luckily it did the trick and her WBC steadily dropped over the next week and she was no longer at such high risk for stroke or seizure. For about two weeks we did not know exactly what she had but soon found out she had Acute Myeloid Leukemia or AML M5 (to learn more about AML visit www.curesearch.org). Since she had received the treatment protocol for JMML she would have to start new with AML treatment for her next round of Chemo. At this point we also looked into if she should have a bone marrow transplant or continue on a Chemo plan for 5 rounds. We spoke to doctors in Portland and Seattle and they had differing views on what would be best to do. The problem (it really is a good thing because it means not many little loves get it but for us it's a problem) is that there are very few Infant AML cases diagnosed each year. As a result there is not much data for them to look to when deciding the best way move forward. In a way the decision was made for us as it turns out there was not a great marrow donor match available. Since she seemed to be responding well to her treatments it was decided that we would continue with Chemo.

So for the next nine months we lived in the hospital and stayed at home since Chelsea could not be around any germs. So what happened with our son Fuller you might ask. It turns out I have the best parents in the world. They took total care of him for us when we were at the hospital with Chelsea and then we all go to be together and home bound when she was not admitted. It was such a rough time for all of us. Fuller missed his mama and papa but was such a trooper. Then there was our poor Chelsea who was such a trooper and she fought so very hard. When she completed her treatment we were told that there was a 50% chance the AML would stay away. We have been fortunate to have it stay away for TWO Years now!!!!!!!

When Chelsea turned 2 1/2 her social worker at the hospital mentioned she would like to refer her for a wish. We were and continue to be so very thankful. When we met with her wish granters they very quickly figured out she is all girl, all princess, all pink all the time. I told them I really thought she would love to visit the princesses at Disneyworld, they agreed and I am sure it will be a dream come true for her and really our entire family.

Here are some pictures of her year basically spent in the hospital. We are so thankful for amazing doctors and nurses who did their best to make us all as comfortable as possible.



Chelsea and her doctor Fuller




Chelsea during a PICU stay



Resting in papa's lap.



Chelsea with her Pump of meds



Chelsea in her "tent". A dear friend of mine made a little tent for her so she could nap and sleep on her normal schedule. It saved our sanity and she loved it.



Chelsea enjoying music therapy



Chelsea at her end of chemo party.

So that is the not so short story of how our Chelsea fought the evil beast AML, hopefully has it defeated and now gets to be the princess she is at Disneyworld.
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Erika (Mama of 2 Great Kids) Chris (Fantastic Husband and Papa of 2 Great Kids)
Fuller (Great Big Brother - Age 5) Chelsea (Awesome Little Sis, Leukemia Survivor and Wish Kid - Age 3)
PTR--Bibbiti Bobbiti - Our Boo gets a MAW Trip to meet the Princesses Feb 1-7
Bibbiti Bobbiti Make A Wish Helps our Boo Have Her Princess Wishes Come True!!!
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Old 08-11-2010, 06:51 PM   #4
Mom2mitokids
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Great PTR. Chelsea is such a fighter. Fuller is such a big brother. You all will have a great time at WDW. Chelsea will be treated like a Princess and Fuller a Prince. He deserves this just as much....sibling lives are turned upside down too. I will be keeping check on how everything is going.
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Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee
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Old 08-11-2010, 07:51 PM   #5
J'sMum
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Hiya and welcome !! i;ve added you to my subscribed list can;t wait to follow along and you have a beautiful family
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
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Old 08-11-2010, 09:02 PM   #6
kayrason333
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Welcome! You have two adorable kiddos!
Sounds like your family could use some time away on vacation!
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Old 08-11-2010, 09:31 PM   #7
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Great PTR!!! You kiddos are super cute! I love her tiara!
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Old 08-12-2010, 12:12 AM   #8
yinyanggirls
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Great intro to your family, and Chelsea's victorious battle! You guys will have a blast!
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Old 08-12-2010, 09:20 AM   #9
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loving this!!!!

I love all of the pictures and how good she is doing!

Great job!

I will put a link to this on the wish trippers page, too!

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Old 08-12-2010, 04:56 PM   #10
hgpiglet
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Your daughter is adorable and a real princess! I'm so glad you guys are getting this trip, since when a child is sick the whole family is affected and especially the siblings who many not really understand why their sibling is getting so much attention. I'm glad to hear that you daughter is doing so well right now! I look forward to hearing your plans!
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Old 08-16-2010, 12:10 AM   #11
fulseasmama
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Thanks!

Thank you so very much! What a nice welcome from everyone. I am looking forward to spending the evening reading everyone's PTR's and TR's...I even figured out finally how to subscribe to them. So much fun! I think I am going to have to start a notebook to write down all the tips I come across.

Thanks again for the warm welcome.
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Erika (Mama of 2 Great Kids) Chris (Fantastic Husband and Papa of 2 Great Kids)
Fuller (Great Big Brother - Age 5) Chelsea (Awesome Little Sis, Leukemia Survivor and Wish Kid - Age 3)
PTR--Bibbiti Bobbiti - Our Boo gets a MAW Trip to meet the Princesses Feb 1-7
Bibbiti Bobbiti Make A Wish Helps our Boo Have Her Princess Wishes Come True!!!
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Old 08-16-2010, 12:41 AM   #12
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What a beautiful, beautiful family! Stories like this should make us all put our own small troubles in perspective. Thank God and the wonderful doctors that your precious baby is healthy! I'm looking forward to hearing all about your plans!
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Old 08-16-2010, 02:32 PM   #13
dlewish
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Hello. Happy to hear DD is doing well. Our DD is also 3 w/ Leukemia (ALL). She is still in treatment and doing well. I don't have a ptr started but just wanted to say hello. If I don't get to a ptr I'll do a TR when we get back.

I have a notebook here and have been writing down all the tips and info from these boards. It's a great source of information. Happy planning.
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Old 08-16-2010, 03:01 PM   #14
maroo
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Quote:
Originally Posted by fulseasmama View Post
Thank you so very much! What a nice welcome from everyone. I am looking forward to spending the evening reading everyone's PTR's and TR's...I even figured out finally how to subscribe to them. So much fun! I think I am going to have to start a notebook to write down all the tips I come across.

Thanks again for the warm welcome.
If you come up with a comprehensive list - feel free to share it on the wish trippers thread....

I have sort of made one over the past few months...but have not really put it all in one place yet. I can link to it for future wish families.

It could take months to read all of the PTR's and TR's. There are a bunch of them.
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Old 08-16-2010, 05:25 PM   #15
J'sMum
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Definately can take months to read them all LOL , I have started reading the newest working my way backwards and It's soo wonderful , good pick me up .. I think we need to add a disclaimer to the start of all this that IT IS ADDICTIVE
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
it beats within you naturally loving from the start.
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