greenjellybean
Mouseketeer
- Joined
- Mar 9, 2014
- Messages
- 128
Greetings to all!
I have been lurking for a while and have finally gotten up the 'guts' to try and post our journey. I'm not very tech savvy, and life is often busy and unpredictable with our family right now, so bear with me if I take a while to post or respond.
I'm mom to two DDs, Savannah (11) and Sophie (7) and wife to DH, Scott. I was working part time in a precious preschool with the most wonderful staff and class before Sophie's health issues started in October. Now, I am staying home with her for the time being, with plans to return to the preschool next fall (have I mentioned that they have been amazing and have reassured me that my position is MINE when I want it back.... such a blessing).
Sophie, as you can tell, is our MAW child. Sophie was diagnosed with Langerhan's Cell Histiocytosis on December 6, 2013. It is a condition that affects approximately 5 to 10 people out of 1 million (a majority of which are children). With LCH, a type of white cell gets activated, much like it is supposed to when an infection is present to destroy the infection. In the case of LCH, the white cell in question (histiocyte) becomes activated for an unknown reason and begins to multiply and destroy whatever organ in which it is located. In Sophie's case, it started in her skull above her left eyebrow and proceeded to destroy the skull itself, causing what her doctors called a moth eaten cloth effect. By the time we knew there was an issue, the mass of cells was threatening her brain. She was misdiagnosed the first time and it wasn't until December that we got the right diagnosis.
She is currently going through chemotherapy and the mass of cells as well as the lesion in her skull are responding beautifully! She is actually in the maintenance phase and we hope she will be clear of all issues and done with chemo in June. That's the plan anyway! There will always be a risk of reactivation of the histiocytes, and because of where the mass is located, her risks for developing insipidus diabetes as well as Central Nervous System involvement are considerably higher than for other children with LCH. Believe it or not, I am far more fearful that it may invade her CNS than of the diabetes. My understanding is that both are irreversible and can only be managed, but the CNS involvement is more progressive and obviously would affect everything. But God has been good to us and her and I'm confident we will deal with whatever we have to, because that is life.
On to the fun stuff! Since Sophie qualifies for MAW, she is confident that she wants to go to WDW! We have taken them once, to celebrate my mother in law's life and love of Disney. She always wanted us to go with her but to my great regret, we never made the effort to save the money necessary to make the trip. As you all know, it can be expensive, and while we did other trips with her, my DH felt like the money for WDW could be spent better elsewhere. FWIW, he was the one to plan the trip to honor her memory.
We made it clear that our trip was to be a once in a lifetime trip, so I wasn't too surprised when Sophie's first choice was WDW (she said, you mean I can go back?!?!
). She has since considered other wishes, but never for long. She has not met with her MAW granter yet, but we got the call earlier today that they have a volunteer in our area. We were 'warned' in her initial letter of acceptance that traveling funds are limited and as such, travel wishes may be limited, so there is a chance she may have to wish for something else and I've tried to prepare her for that. She says she also wants a camera of her own to take her own pictures. OR she wants to trade pins.
I feel like I should mention that Sophie is my girly girl. She still likes the princesses, but a little of the princess 'magic' is gone.
Favorite color is purple and she loves sea turtles and make up and clothes and shoes! 
Savannah is my preteen, who is STARTING to show an interest in clothes and shoes and make up and the such. She is far more interested in her animals (she has a fish tank, a hamster and a gecko) and continues to catch whatever critters she can outside. She loves to read and is very smart and very generous. Favorite color is teal and ocean animals
They both LOVE Minecraft
As I mentioned before, I'm hopelessly out of date tech speaking, so bear with me if I do something stupid that EVERYONE knows you aren't supposed to do in a forum.
And for anyone that has actually taken the time to sit and read this terribly long rambling novella, God bless you for taking the time! I'll try not to ramble so much again
I have been lurking for a while and have finally gotten up the 'guts' to try and post our journey. I'm not very tech savvy, and life is often busy and unpredictable with our family right now, so bear with me if I take a while to post or respond.
I'm mom to two DDs, Savannah (11) and Sophie (7) and wife to DH, Scott. I was working part time in a precious preschool with the most wonderful staff and class before Sophie's health issues started in October. Now, I am staying home with her for the time being, with plans to return to the preschool next fall (have I mentioned that they have been amazing and have reassured me that my position is MINE when I want it back.... such a blessing).
Sophie, as you can tell, is our MAW child. Sophie was diagnosed with Langerhan's Cell Histiocytosis on December 6, 2013. It is a condition that affects approximately 5 to 10 people out of 1 million (a majority of which are children). With LCH, a type of white cell gets activated, much like it is supposed to when an infection is present to destroy the infection. In the case of LCH, the white cell in question (histiocyte) becomes activated for an unknown reason and begins to multiply and destroy whatever organ in which it is located. In Sophie's case, it started in her skull above her left eyebrow and proceeded to destroy the skull itself, causing what her doctors called a moth eaten cloth effect. By the time we knew there was an issue, the mass of cells was threatening her brain. She was misdiagnosed the first time and it wasn't until December that we got the right diagnosis.
She is currently going through chemotherapy and the mass of cells as well as the lesion in her skull are responding beautifully! She is actually in the maintenance phase and we hope she will be clear of all issues and done with chemo in June. That's the plan anyway! There will always be a risk of reactivation of the histiocytes, and because of where the mass is located, her risks for developing insipidus diabetes as well as Central Nervous System involvement are considerably higher than for other children with LCH. Believe it or not, I am far more fearful that it may invade her CNS than of the diabetes. My understanding is that both are irreversible and can only be managed, but the CNS involvement is more progressive and obviously would affect everything. But God has been good to us and her and I'm confident we will deal with whatever we have to, because that is life.
On to the fun stuff! Since Sophie qualifies for MAW, she is confident that she wants to go to WDW! We have taken them once, to celebrate my mother in law's life and love of Disney. She always wanted us to go with her but to my great regret, we never made the effort to save the money necessary to make the trip. As you all know, it can be expensive, and while we did other trips with her, my DH felt like the money for WDW could be spent better elsewhere. FWIW, he was the one to plan the trip to honor her memory.
We made it clear that our trip was to be a once in a lifetime trip, so I wasn't too surprised when Sophie's first choice was WDW (she said, you mean I can go back?!?!
). She has since considered other wishes, but never for long. She has not met with her MAW granter yet, but we got the call earlier today that they have a volunteer in our area. We were 'warned' in her initial letter of acceptance that traveling funds are limited and as such, travel wishes may be limited, so there is a chance she may have to wish for something else and I've tried to prepare her for that. She says she also wants a camera of her own to take her own pictures. OR she wants to trade pins. I feel like I should mention that Sophie is my girly girl. She still likes the princesses, but a little of the princess 'magic' is gone.
Favorite color is purple and she loves sea turtles and make up and clothes and shoes! Savannah is my preteen, who is STARTING to show an interest in clothes and shoes and make up and the such. She is far more interested in her animals (she has a fish tank, a hamster and a gecko) and continues to catch whatever critters she can outside. She loves to read and is very smart and very generous. Favorite color is teal and ocean animals
They both LOVE Minecraft
As I mentioned before, I'm hopelessly out of date tech speaking, so bear with me if I do something stupid that EVERYONE knows you aren't supposed to do in a forum.
And for anyone that has actually taken the time to sit and read this terribly long rambling novella, God bless you for taking the time!
I'll try not to ramble so much again
So I felt terrible AND guilty. I did try though and encouraged them to stay and watch. 
Must need to do something different for those than what you do to post the pics. I'll see if I can't fix that asap.
