Seagully's post to stand alone.

[Mackey Mouse]

She posted it on the welcome board, which is fine, but I wanted all of you to read it so I am putting it here for you all to read and comment on the bravery and wisdom of this young person:



"The magic of Disney in me.

--------------------------------------------------------------------------------

Hello, I'm new to disboards but have already felt very welcome and am enjoying the disney feel of the site. Everyone calls me Seagully, it's my disney pirate nick name- So i'll stick with that for now. I'm 16 years old and 5 years ago I was diagnosed with chronic myeloid leukemia. I was only a child then, still am I suppose. But I have grown alot since. I was hospitalized for a few weeks than was able to go home and still be treated. At first the three times a week doctor appointments were frustrating to the fullest, I hated going, didn't understand cancer and would throw the biggest fits for my mum. I now enjoy visiting the doctors who are still working hard and doing their very best to help me. I was first introduced to disney 3 years ago, living in England. I visited Disneyland Paris on a trip provided for me and other cancer patients at the health center i attended, I had the most wonderful experience and I would never forget it. The Disney Magical feeling can truly change a persons life, and for that I am grateful. I can go into so many details about that wonderful trip, but it will have to wait for another time. Earlier this year I moved to the United States for medicine 'experiments' I have yet to try and quite frankly am scared to the bone. My mum says it will only help, and i trust the doctors who say i won't make it to adultery and yet are still giving me the best support and help they can. What do I have to lose? For those of you out there like me i have two words: enjoy life. Enjoy life to the fullest, have fun, laugh, smile, be with the ones you love and if for some reason you feel like running down main street screaming 'i am free' goodness sake do it! and if you want to spend every waking moment in a disney park taking in that everlasting feeling of happiness, do it! Give mickey mouse the biggest hug, scream your voice out on a thrilling roller coaster and dance with a parade! Sing with the pirates! Just have fun, that goes for everyone. I plan on doing all of the above in 2 weeks when i visit Disneyland Resort for the first time. I have my good days and my bad days but disney always has a way of making me smile, and when i'm not dreaming of disney or in a disney park i can go to vmk (virtual magic kingdom) and the feeling still last even when i'm sitting in a hospital bed during chemotherapy, i can log on there and shoot ships, talk with great friends and even ride my favorite peter pan ride. I may not make it in this world as long as others, but i can say I am enjoying life and I'd like to thanks disney for making all my dreams come true.
__________________
A Pirates life for me! "

 

[Mackey Mouse]

Your post this morning was just what the dr ordered for me. I was feeling a little down, worried about my husband, worried about my friend's husband who is not doing well, and then I read what you wrote and decided here is someone in the midst of a battle for their life. Your post was incredible, do come back and post whenever, your words can help others..

My hopes for you this new year is that the doctors in the US can help and give you more time to live your life enjoying the magic of Disney and whatever in your life that you are passionate about..

Hugs...

 

[safetymom]

I wish more people could feel the way you do. Thank you for the reality check. I wish the best for you.

 

[Seagully]

I just noticed this thread and thank you for posting it. Glad I was able to help you. I read about your husband and I hope the radiation treatment will help his cancer and keep it gone for good. Will say a prayer for you, your husband and your friends husband. My thoughts are with you all. I have found difficult days where I feel I can no longer go on with daily activities, sometimes I just want to break down and cry. I'm sure you may feel that way as well sometimes. If you Just focus on the positive things in your life, I promise it will out number the negative and will only make you stronger. I'm here if anyone ever wants to talk, Your welcome to pm me as well Have a magical day.

 

[Mskanga]

Oh god is this making me cry , Seagully my daughter is 14 years old and she is also fighting cancer at this time , she has osteosarcoma. She is also going through chemotherapy in fact she is having a blood transfusion as we speak , and having as you say good and bad days .
She was granted a trip from the make a wish foundation and her wish is to go to disneyland in california , you bet we plan on having the celebration of a lifetime there .
I will pray for you to beat this beast , I know this has made you grow up way much faster than you should have.
Hugs to you and your family , stay strong and possitive.
Oh , and if you go to the teen board , my daugher's name is Imabrat.

 

[Seagully]

Hello mskanga, I hope your daughters blood transfusion is going well. I've been on many different treatments but mainly the chemotherapy, It does help but slowly and I often find myself weak the days of chemo. As is somedays are great feel like flying and others i am completely exhausted and weak. If I remember correctly osteosarcoma is a bone cancer, i've got myeloid leukemia which is in the blood. The white blood cells from my bone marrow entering my blood stream. I start the experiment treatment Thursday, which is a medicine that i'll be taking daily. Hopefully that will go well.

the make a wish foundation is a great dream come true foundation. I've never heard of it living in the United Kingdom but once i moved here I did, and have heard so many great things come from there. How blessed your daughter and the rest of the family are. You all have a magical experience and enjoy yourselves it's a wonderful place and you'll have a very memorable experience. (try a few churros for me and say ahoy to the pirates!)

I don't go to the teen boards very often but if i run into imabrat will say hi!

 

[Mackey Mouse]

Big hugs to all of us here..

Kanga.. I am so glad that Make a Wish is helping you.. In all the years that Tom worked for Fidelity, he would ask me which charities to give to and then Fidelity would match his donation... We always gave to Make a Wish and to this day, even in his retirement, continue to give to that worthwhile organization...

Have the trip of a lifetime.. hugs to you and to your daughter.. and to you too Seagully....

I am blessed to have this board to come to......and to have people who care and understand posting here..

Hugs all around, through my tears... hugs!!!!

 

[annrae]

Big hugs to all of us here..

Kanga.. I am so glad that Make a Wish is helping you.. In all the years that Tom worked for Fidelity, he would ask me which charities to give to and then Fidelity would match his donation... We always gave to Make a Wish and to this day, even in his retirement, continue to give to that worthwhile organization...

Have the trip of a lifetime.. hugs to you and to your daughter.. and to you too Seagully....

I am blessed to have this board to come to......and to have people who care and understand posting here..

Hugs all around, through my tears... hugs!!!!

Hi Marsha: I hope everything is going a bit better for Tom - I think of both of you so often.

We are truly blessed that you decided to begin this post on the boards - it has given so many people the opportunity to discuss their problems and it has helped them to cope and given them compassion. Thank you. Barbara

 

[Mskanga]

You know I am amazed at the kids , they are fighting the battles of their lives and how much encouragement and strentgh we get from them is unbelievable.
Grown ups do too , but to me kids are the biggest , they teach me every single day what is important in life , I truthfully don't think I would handle things like my daughter is if this happened to me when I was her age.
How is Tom doing Marsha ? I hope things are going as well as expected or better. Cherish every single day , I know that I appreciate life a lot more now than I did before. HUGS

 

[hegs65]

Seagully, I just wanted to thank you for your wonderful words of wisdom-they made my day! My almost 16 yr old son is also battling leukemia so I can very much relate to what you are saying. I am thankful to say that he is doing well for the most part. Which part of the country are you being treated in? We are in the Boston, MA area. I cannot say enough how fortunate we are to be so close to the most cutting edge treatment centers. Please keep us posted on your progress. Thanks again for sharing! Patty

 

[Mackey Mouse]

Patty.. hugs to you and your son... glad he is doing well with his treatment.. I am also in the Boston area and my husband is doing treatment at MGH.....for Kanga... He is doing ok, they stopped chemo this week to give him a break.. lots of stomach issues, but he is still doing radiation.. We will not know anything until at least 6 weeks after treatment is stopped and he has another two weeks, but who is counting, we are doing this one day at a time.. Kanga, hope your little sweetie is doing ok too....

Seagully, hope you are doing well.. you have inspired many of us with your post..

Hugs all around.

 

[Mskanga]

Patty I am sorry that your son is also battling this beast but glad that you are close to wonderful medical centers that can deal with his condition. Marsha you are so right about taking one day at a time , Sonya is having one of those break weeks due to low blood counts but she started walking again today ....I almost cried , it was the best sight I have seen in months ( she has a knee replacement as a result of the surgery to remove the tumor ).
I hope that Tom improves soon , there's always hope !!!
For Seagully , Patty and the son , my prayers continue to be with you . HUGS

 

[Seagully]

Hi all, Started the treatment on Thursday and was feeling fine for the first few hours then i got really shaky and couldn't even hold a pencil, went to sleep and woke up completely dehydrated I was hospitalized with fluids all day yesterday. I'm still on the medication but in smaller doses it doesn't seem to be helping at all! they said i'll be staying on it for a weeks and if it doesn't help then will be back to chemotherapy (and possibly back to England) I'm kind of disappointed because I was looking forward to this, but it could just take a while for my body to respond to the new treatment my hopes are high that that's what it is.

Hugs to all, i'll go catch up on the post from this thread..

 

[LuvOrlando]

Seagully, I don't quite know what to say but my thoughts and prayers are with you.
Hugs to you

 

[Mackey Mouse]

Seagully... one day at a time and stay focused. I am glad that they hydrated you, it was the right thing to do......Hopefully in a few days the meds will kick in correctly and you will start on the road you need to be on..

Hugs, we are thinking and praying for you.

 

[Mskanga]

Seagully if I have learned something through all this is that this is all trial and error . Sonya had the same protocol many people did but it took a few adjustments so it would work for her , so patience and faith in the doctors is all we could have and pray.
Hang in there sweetie , hope is the last thing to lose and we are not ready to lose that for you , not for another few years!!! Love ya !

 

[Seagully]

I can't thank you all enough for your support and advice, it means alot to me right now. My thoughts go out to all of you and prayers that things get well.

I have had 3 more treatments since my last post here, and it seems that this is not working well for me. I have gone through more side effects then the doctors thought possible. Nothing major, thank goodness. It was mostly dehydration drowsiness fever and chills. But it is enough for me to say no more. Because not only are the side effects making me weak but the medicine itself doesn't seem to be making any improvements. I do appreciate the doctors doing what they thought would be best but I now just want to go back home. So come April I will be moving back to Canterbury and finishing my chemotherapy. I have to stay here for two more months so I can stay monitored and be sure that nothing else happens due to medicines I was taking. All in all I am feeling much better lately and that for sure is a good sign. I'm accepting this life battle and not sinking without a strong fight.

 

[safetymom]

seagully, you have an amazing attitude with everything you are dealing with.

 

[Mskanga]

Seagully I am sorry that the treatment is making you so sick , it really does take it's toll on the body. Sonya has been also feeling weaker but hopefully after the last five treatments that she has left she will start feeling much better.

 

[hegs65]

Seagully, I am sorry to hear that you are not feeling well. I will continue to keep you in my thoughts and prayers. My ds has had very similar problems with his chemo in that they are causing more problems than doing any good. I just hope and pray that you are able to keep up your strength and continue to fight this monster. I agree with Mskanga that you young people are absolutely amazing! Your wisdom really helps me to keep things in perspective. Please stay strong! Patty