I would like to share a story of

I would like to share a story of a little boy named Dylan who has a cancer called Malignant Rhabdoid and why this little guy means a lot to me.

Dylan is a son, nephew and grandson to a family who I'm very close to and care about as if they are my own family. Those of you who have known me my whole life knows that Nikki was my very best friend from childhood on and we are still great friends today. Nikki is now married to her longtime boyfriend from highschool, Jim, and has 2 beautiful boys named Chase and Caden. I still have yet to meet the new addition, Caden, but I hear he's adorable and wonderful.

I've always been close to Nikki's parents, Susie and Steve. And I get to see them now and then which is awesome. I was like "Kimmy Gibbler" who would never go home! (You remember the show Full House, right?) Susie fed me, let me practically live at her house when me and Nikki just couldn't bear to be apart, and they even took me on vacations to Florida or camping trips. This family did so much for me! Even Cody, the family dog was someone very special to me!

And then there is Nikki's little sister, Sonya. Sonya was about 4 or maybe 5 when I first met her- I was about 9. Sonya was always considered a sister to me (the little sister I didn't have at the time). I've just always absolutely adored her. I still picture her big brown puppy-dog eyes and blond hair. I would play with her, tease her, teach her things I shouldn't even know myself (I don't know why Susie ever let me around her kids!), and fix her hair. Sonya always loved when I curled her hair as a kid. She was "Miss Sonya Lee" to me.

A lot of time had passed once I was out of school and had moved away and started growing up. After years of not seeing Sonya, I got word that she was pregnant and I was invited to her baby shower! Seeing Sonya again was awesome and so strange at the same time- she was a grown woman now with a baby on the way. She had that same adorable smile and puppy-dog eyes, though.

A little bit of time has passed since that baby shower, and I haven't seen Sonya since. I had heard from Nikki that she had a healthy baby boy and named him Dylan. I wanted to visit, but never did. I'm good at losing contact or going a long time without seeing someone. And this time, I found out some bad news since I last saw Sonya.

I hadn't even talked to Nikki in a long time and the other day (Saturday, 10/11) I got a call from Stevi and we were talking about what we did that day. She and the family had stopped by the Fantastic Sams in Woodriver where Sonya works to get their hair cut. She said they were putting on a benefit for Sonya. Immediately my heart sunk and I asked, "Why does Sonya need a benefit?" Stevi was surprised I hadn't heard and she told me that her little boy has cancer.

Immediately after, I wrote a letter to Sonya and emailed Grandma Susie to find out details. She explained the cancer to me as being called Malignant Rhabdoid which is the type of tumors he has. Here is the email she sent to me:

Hi Amanda,

I'll be sure to get your letter to Sonya. They are over at Children's Hospital right now. Dylan started running a fever late Saturday/early Sunday so they admitted him. Anytime he runs a temp over 101 he has to go back into the hospital because of infections. They were scheduled to be there today anyway before he got sick because they are doing a CT scan to see if the chemo is shrinking the tumor enough to go in and remove it. He has a rare type of tumor, it's called a malignant rhomboid tumor, and it is most common in infants. The large tumor is up in his left shoulder area, and then there is a small one on his liver, and a small one on his lung. He stopped using his left arm (over a period of time, it started like in May, and progressively got worse) so they did a MRI (back in July)& that's how they found it. In our worst nightmares we never would have thought it was cancer/tumors that was causing him not to use his arm. So they have him doing a 30 week chemo program, and we're praying that it works. Sonya is doing amazing with all of this, and I am so proud of her and her "strength". He has a port in his chest that all of his drugs (iv) are administered through, and when they are at home she has to put them through with a battery operated "pump". She has become very adept at all of the special care that is required.

So I think that's the condensed version of what's been going on with our "Baby Dills". Say a prayer for him.

On a happier note, Baby Caden is doing well, and Chase is too, and yes I love being "MaMa" to 3 precious boys! And now you will be having a sweet baby girl to do all the fun girl stuff with! I'm sure your Mom is super excited. I'm so very sorry about little baby "b", I know that has to be hard for you & Gus. You & Gus will be great parents, & I hope she has your personality, so one day she can "entertain" one of her friend's Mom's with her hilarious antics!

Well I have to get back to work so take care & I'll talk to you later.

Luv ya,

Susie

P.S.

I attached some pics of Dylan for you

Here are the pictures Susie sent to me:

Baby Dylan looks so much like Sonya! He's such a beautiful boy!!!

I got another email from Susie explaining Dylan's patterns of chemo he has to go through. I can't believe such a little body can go through all of this. Here is a quote from that email:

" He has a series of different chemo drugs in his treatments, he has 1 week where he goes & gets the chemo & they have to stay overnight, then they he has 2 weeks where they go & he gets the chemo & then come home the same day, then he has 1 week where he's admitted & there for 5-6 days with chemo every day, then he's off for 2 weeks, then back for a week in with 5-6 days of chemo, and then it cycles all over again and this will go all the way through late March/ early April if he stays on schedule.

That would be great if you get to visit him. As long as his "counts" are good, it is ok for visitors, but when they are low then he is susceptible to any germ or bug that could be going around, and he really has to stay protected from that since his immune system is basically non existent at that point."

Please keep this special little guy and the Ebbeler family in your thoughts and prayers.

As I mentioned earlier, there was a benefit to help raise money to go towards the recovery fund for Dylan. If you would like to make a donation, please email me and I will let you know where to send it. Any donations can help make a Happy Ending to Dylan's story. Thank you.
My email address is: sansone.amanda@gmail.com

I found these pictures of Sonya from when we went to Tampa, Florida as kids. I just thought they'd be fun to add:


Here I buried Sonya in the sand. I remember she cried at first because she didn't want to be buried but I made her!	Then I turned her into a mermaid and gave her jugs too... haha. Susie has a bunch funny pictures of us as kids too.

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