Friday, April 1, 2011

Staying In

It looks like we're going to be here a while longer...

Her methotrexate level is still too high for discharge.  They don't anticipate her being clear today...maybe tomorrow, but no guarantees.

We are scheduled to be back on Tuesday, so I'm just hoping we get at least one full day out in between...preferably Monday, since it's my birthday.

The other day, I went to the support group for parents that is held in the oncology unit each week.  It is led by a mom whose daughter is 2 years out of leukemia treatment and a hospital social worker.  They bring in cookies and fresh fruit and just provide a space for parents of patients to meet, talk, vent or whatever they need.  

I met the parents of another patient here.  Their 13 year old daughter was diagnosed with leukemia over the summer.  She has been having chemo treatments since then, but now needed a bone marrow transplant.  She had her transplant last week, and must be here in isolation for 6 weeks, then stay at another facility until day 100 after her transplant.  During this time, she has a very restricted diet with no microbial contaminants, which means no milk, no fresh fruit, no outside food.  She can't leave the room, and everyone who enters must scrub hands for 2 minutes, wear masks and shoe covers to protect her from germs while her immune system rebuilds.

I can't imagine how difficult it must be for that girl, let alone for her parents, who are staying at the Ronald McDonald House and traveling over 2 hours when they need to be at work.  I am so grateful that Scarlett is so young, that I am able to be with her, and that we live so close to the best treatment. 

7 comments:

Sylvia said...

Well I sure hope her levels get to the right number soon and you get to be home a bit before turning right around and going back. And I hope you get to celebrate your birthday outside of the hospital. Yes, you would never wish for this or any illness for that matter, but I would agree that it has to be easier on a baby than it is on an older child that knows what they are missing out on. How hard for that family and that little girl.
So glad to hear about the support group, I bet that can really be a great outlet for you to express your feelings. Thinking of you guys always!

Brandi said...

That's what I meant by being glad she is young - she isn't missing school, friends or her "regular" life. By the time she is ready for school, we hope this will be far, far behind us.

Mrs. Cody said...

Sorry to hear she can't go home :( I won't say I know how hard it is because my son's heart problems are nothing compared to hers. But I understand the waiting and waiting.
I am SO grateful we have a McDonald house right across from the hospital. It is such a blessing.

Rose said...

This is a tough journey but you have a tough little girl. Glad you can be close to everything. Hope she feels better soon!

Christina said...

I have not had a chance to check up on our little butterfly as much as I use too, but I do think of you all every single day. Thanks for sharing more beautiful pictures.
be brave, be strong, keep fighting
Christina & Kaitlyn

brooksbarrelhorses said...

Heard this song on the radio by rascal flats the other day and it reminded me of you guys...

I Won't Let Go lyrics

It’s like a storm
That cuts a path
It’s breaks your will
It feels like that

You think your lost
But your not lost on your own
Your not alone
I will stand by you
I will help you through
When you’ve done all you can do
If you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go

It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all
And we’re too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you’ve done all you can do
( From: http://www.elyrics.net/read/r/rascal-flatts-lyrics/i-won_t-let-go-lyrics.html )
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight

And I won't let you fall
Don’t be afraid to fall
I’m right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it

Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I won't let go
Oh I’m gonna hold you
And I won't let go
Wont let you go
No I won't

michelmoba said...

whenever i read stories of kids with stuff going on I remind myself how grateful that there is places like the Ronald McDonald house & St Judes Research facilities