Her birthday was
November 14th - it was 2010 and she was perfectly fine and
two weeks later... She loved Christmas so
she made us put the Christmas tree up the Sunday before Thanksgiving every year
All of a sudden she said, she goes "I'm kind of tired I think I'll go downstairs and watch
Liam play Wee." And we were like okay
Kayle got up and she was puking and so Ellie stayed home with her and she was it was like she had the flu.
So she was sick that whole week. She couldn't eat anything couldn't hold anything down
She never complained about anything like if she was in pain she really had to be in pain, and she started to say
that her stomach was hurting her.
Ellie called The doctors. They said take her to the emergency room. That was Thanksgiving Day, we're in Children's that night and
the next day was the Friday afterwards and that was the day she was diagnosed and
It's just
your world goes upside down after that
And then my son when she was diagnosed said if there's anything I can do to save her life I will but they said
if they could find a bone marrow donor they would we would do the bone marrow.
So they tested Liam and sure enough he was the bone marrow donor and he was like "Wow that's great!" you know and uh
She engrafted you know her numbers came back up and she engrafted and
which was exactly what we wanted and we were all happy she was gonna go home in two weeks she
was feeling better but she was still nauseous - she couldn't hold anything down
And so one day they were they rounded on her and
They noticed that her lymph node in her right arm was
enlarged and that's what she was having a lot of pain that day she started having a lot of pain there.
So they said "we want to biopsy that." It came back her ALM went there.
The next morning we talked to the PACU team and they came in and they said
"She's not gonna make It through the night" and
So we called we called everybody and told them, and they all just came in and
they did handprints she had a best friend Anna and
They did handprints of that and they did handprints of me and Ellie her and Liam
So she passed away it was Easter Sunday it was early in the morning... I had fallen asleep and Ellie had fallen asleep and
then they woke me up and they said "it's time" and I said
okay and I woke Ellie up and and we just... she took her last breath in our arms
Right before they took her Liam leaned over and he kissed on the cheek and said "Goodbye."
It was amazing.. the kid was amazing.
If it wasn't for our friends,
I say this all the time, we'd still be sitting in Children's Hospital not knowing what to do
One of our friends came over every day and woke us up at nine o'clock and
we we just wouldn't get out of bed and they would they would come over every day and bring us coffee and they did that
for two weeks.
It's like you're a zombie you just walking around and you can't believe that this actually happened you know
After Kaylee died
It was like six weeks we got
some books and a handwritten note... the handwritten note was the biggest thing in the whole thing
I think the second time she sent us something it was...
they had...
So they made a scrapbook
of all their favorite
times...
the nurses and the doctors...
the most memorable times...
and they all wrote it... was a written hand written or typed out? I can't remember... It was typed out so we could read it
but It was all like a scrapbook you know so you know
parts here and parts there on every page and
That was really cool to see some of the stuff that they remembered, you were like "Oh yeah I forgot about that" you know
The literature is good, at first you kind of just put It aside, but that was really great. Because that was another thing that was
personally made, you know, stuff like that is really good.
Try to get out of bed every day.
That's a huge one because if you don't you... believe me I've spent three days in bed...
Talk to somebody. At first you don't want to... it's too hard to talk at all.
it's just too hard.
You know you just
you're just a mess.
A total mess. And you don't know what to do... so when Kaylee first
passed away, we just focused on Liam completely.
He would say we smothered him, which we probably did, you know.
but uh
Dana-Farber was really great... he had, like I said, its Child Life Specialist Molly and so we couldn't...
she wanted to see him, obviously, afterwards, you know, to help him through the grieving process and
So we couldn't bring him in there. I was gonna try It and Ellie goes
"Maybe Molly can come down here", and she did - she came down there until June.
you know and...
That was amazing you know and
And that helped him out a real lot. And then she helped find him a counselor down by where we live.
To help him go to go through the process and
That was great. But the big thing is getting out of bed every morning!
It's really hard, you have to get over that hump and
And
Try to stay positive but
I find now talking about it is good. I always feel better afterwards, you know and
There is...
You will find a network of
parents out there that have lost a child from leukemia or
brain tumors or some type of cancer and uh
we always find a way to find each other, so we're out there.