PORT

Today as we were leaving to PCMC to get Bella's PORT put in, she said to me

"We going to Dance Class Mom?"  "I go dance with Nora?"

Dancing is what she LOVES to do, and dancing with her bestie Nora makes it that much better!

Nora is the reason Bella smiles, and I know Bella is the reason people smile when they are around her.

As I told her "No, we will go in a little while" my heart broke.

I know it's gonna be at least 3-6 months before she can go and be around people,

and it could even be longer if the immunosupressants don't work.

As I tell her this, and I think about it in my head-I have total faith that she WILL be able to dance again.

When she will be able to- I DON"T know.

We arrived at the hospital and they started her on a red blood cell transfusion 

(her platelets were great from the transfusion the previous day).

It was nice to have the IV already in from the day before, so no "pokies" today.

While she was getting transfused, we got a visit from the JAZZ bball players and dancers.

Krissy was so excited to be there the same day we were there, and so was I...

she gave me a little pep in my step through all this-l love & adore her and all her dancing (so talented)!

So after the transfusion we headed down to the OR.

By this time it was late-4ish, and Bella hadn't ate or drank anything since 10am.

She was def hungry and tired.  She actually fell asleep in my arms while we waited for her to go in.

This was a HUGE blessing, I knew handing her off at the door for surgery was gonna be rough.

She stayed asleep and so when I handed her off, it was a smooth transition.

While we sat there and waited, I obviously had a lot on my mind.

Being prepped and educated on the PORT all day was making this all seem more real.

She will be needing transfusions until her own bone marrow starts making the cells again,

and this will be weeks if not months.  I have known this, but the realization of it all has now come.

As the OR Dr. came in and talked to us about the surgery, and told us how this port should

be good for at least 3 yrs., my heart sunk.  Three years?  It sounded like eternity.

Bella's treatment of immunosupressants (if they start working) will be at least 18 months.

I feel like 18months compared to her whole life is no time at all.

When I'm sitting in the hospital though, and realizing that I will be here at least once a week for transfusion,

that is overwhelming.

I sat there and started to fear, fear the worst of this not working and having to do a bone marrow transplant.

The thought of her having to go through 2 rounds of treatment kills me.

The thought of her not being able to just do every day activities makes me wanna cry.

But as the fear came, I started telling myself things I was grateful for.

Matt does this when he goes running, and he tells me these things when I'm having a hard time.

I'm grateful....

she only has one port instead of 2, which some kids have

she can have a port and not be in as much pain from the IV's

there is treatment and options

for Dr.'s and modern day medicine

for family and friends that love and support us

for prayer

that I can be with her every day

I can hold her when she is scared

she is so tough and brave

we live so close to a children's hospital

for a loving Heavenly Father & Jesus Christ

for her sweet sassy spirit

As I listed all these things in my head, I knew I was blessed.

I have been told to "not fear, and that Heavenly Father is with me".

So I choose to have Faith, and that what seems overwhelming right now-

will come to pass.

Today I am most grateful that she is out of surgery and doing well!

I know she did so well and it all went so smoothly because of ALL the prayers

being said on her behalf-I am so grateful for every single one.

We are home and all ready for a good night sleep.