Bibbiti Bobbiti - Our Boo gets a MAW Trip to meet the Princesses Feb 1-7

Discussion in 'Pre-Trip Reports and Plans' started by fulseasmama, Aug 9, 2010.

  1. fulseasmama

    fulseasmama Mouseketeer

    Joined:
    Mar 9, 2010
    Messages:
    365
    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)
    princess:
    [​IMG]
    Here she is during treatment - Summer 2008
    [​IMG]
    Current Picture of our all smiles girl - Spring 2010


    Fantastic Big Brother - Fuller (4 and he would tell you soon to be 5)pirate:
    [​IMG]
    Our guy Age 3 Winter 2009
    [​IMG]
    Ready for his last day of school June 2010


    Great Husband and Papa to our kids - Chris::MickeyMo
    [​IMG]
    Celebrating Papa's Birthday Jan 2010
    [​IMG]
    Enjoying some time in Seattle


    Then there is Me Fuller and Chelsea's Mama - Erika::MinnieMo
    [​IMG]
    Me and my little pirates July 2010
    [​IMG]
    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.....
     
  2. Avatar

    Google AdSense Guest Advertisement


    to hide this advert.
  3. Mom2mitokids

    Mom2mitokids DIS Veteran

    Joined:
    Jul 22, 2010
    Messages:
    1,583
    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.
     
  4. fulseasmama

    fulseasmama Mouseketeer

    Joined:
    Mar 9, 2010
    Messages:
    365
    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.

    [​IMG]

    Chelsea and her doctor Fuller


    [​IMG]

    Chelsea during a PICU stay

    [​IMG]

    Resting in papa's lap.

    [​IMG]

    Chelsea with her Pump of meds

    [​IMG]

    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.

    [​IMG]

    Chelsea enjoying music therapy

    [​IMG]

    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.
     
  5. Mom2mitokids

    Mom2mitokids DIS Veteran

    Joined:
    Jul 22, 2010
    Messages:
    1,583
    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.
     
  6. J'sMum

    J'sMum Mouseketeer

    Joined:
    Jun 29, 2010
    Messages:
    375
    Hiya and welcome !! i;ve added you to my subscribed list can;t wait to follow along and you have a beautiful family :)
     
  7. kayrason333

    kayrason333 Mouseketeer

    Joined:
    Jul 26, 2010
    Messages:
    94
    Welcome! You have two adorable kiddos! :goodvibes
    Sounds like your family could use some time away on vacation!
     
  8. xanphylus

    xanphylus DIS Veteran

    Joined:
    Jun 6, 2009
    Messages:
    1,358
    Great PTR!!! You kiddos are super cute! I love her tiara! :lovestruc
     
  9. yinyanggirls

    yinyanggirls DIS Veteran

    Joined:
    Sep 27, 2009
    Messages:
    1,872
    Great intro to your family, and Chelsea's victorious battle! You guys will have a blast!
     
  10. maroo

    maroo DIS Veteran

    Joined:
    Aug 3, 2008
    Messages:
    8,027
    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!

    :)
     
  11. hgpiglet

    hgpiglet Earning My Ears

    Joined:
    Aug 6, 2010
    Messages:
    47
    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!
     
  12. fulseasmama

    fulseasmama Mouseketeer

    Joined:
    Mar 9, 2010
    Messages:
    365
    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.
     
  13. T*Bird

    T*Bird DIS Veteran

    Joined:
    Aug 5, 2010
    Messages:
    1,234
    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!
     
  14. dlewish

    dlewish Earning My Ears

    Joined:
    Jul 14, 2010
    Messages:
    56
    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.:goodvibes
     
  15. maroo

    maroo DIS Veteran

    Joined:
    Aug 3, 2008
    Messages:
    8,027
    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. :)
     
  16. J'sMum

    J'sMum Mouseketeer

    Joined:
    Jun 29, 2010
    Messages:
    375
    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 :cheer2::cheer2:
     
  17. Mom2mitokids

    Mom2mitokids DIS Veteran

    Joined:
    Jul 22, 2010
    Messages:
    1,583
    I'm doing what J's Mum is doing..reading them backwards. I love reading them all.
     
  18. LindaBabe

    LindaBabe <br><img src="http://www.wdwinfo.com/dis-sponsor/i

    Joined:
    Oct 20, 1999
    Messages:
    10,171
    You have beautiful children! Love the tent idea.
     
  19. fulseasmama

    fulseasmama Mouseketeer

    Joined:
    Mar 9, 2010
    Messages:
    365
    Hi all...Happy September! I had seen on some of the posts that families had Disney movie nights as they got ready for their MAW trips. It seemed like a great idea and a nice way for them to see some movies they have not seen before. So for our first themed movie night I decided to start with Tinkerbell because I knew I would be able to find a few items for activities (I found some coloring sheets, tic tack toe games, and Tinkerbell bandz picked out by Chelsea), a Tinkerbell bag for popcorn and Tinkerbell fruit snacks to go with the movie. We had some friends over with their twin girls and so the kids had a great fun night. It worked out awesome and I am excited for the next one in a couple weeks which I think I will tie into the theme of Fuller's birthday party which is going to be Toy Story (probably the second one since it has Jesse and my daughter loves her). Anyway here are a few pictures from our movie night.

    [​IMG]
    The kids playing games and coloring...They loved the Tinkerbell tic tack toe!

    [​IMG]
    Fuller showing me his finished picture.

    [​IMG]
    Chelsea showing me her finished picture.
     
  20. Mom2mitokids

    Mom2mitokids DIS Veteran

    Joined:
    Jul 22, 2010
    Messages:
    1,583
    How cool. Looks like a fun idea. Very cute pictures.
     
  21. hgpiglet

    hgpiglet Earning My Ears

    Joined:
    Aug 6, 2010
    Messages:
    47
    It looks like the kids had a GREAT time!
     

Share This Page