Day Whatever.....

I'm not even sure what day we are on today.

 

After a while, they really do all run together.

 

We were told he would have a really busy

day today, repeating the bone marrow biopsy,

meeting with the trial drug representative and such.

 

So far, we have seen the Nurse Practitioner,

a team of Doctors, but no trial drug representative,

who is the person we are REALLY anxious to talk to.

 

We have just been told she is on vacation.

 

I can't tell you how frustrating that is.

 

They can't do anything until

he signs consents for the study. 

 

He can't sign consent until we meet with her.

 

We know it is in God's timing.

 

I keep saying that over

and over to myself in my head.

 

I think we are all just exhausted

which simply compounds the frustration.

 

He's ready to get started.

 

So am I.

 

He is still running some

low blood pressures, so they

are holding his blood pressure meds.

 

At this point, they would

rather him run a little high than low.

 

The skin surrounding the Hickman,

which was placed Friday, is really tender, a tad more

swollen, and has a little bit more redness than they would like.

 

They are starting a different antibiotic today to cover that.

 

His blood counts were down a little yesterday.

 

It may be tomorrow before they can do the biopsy.

 

We shall see.

 

Thank you all for your birthday wishes yesterday.

 

Though I never, in a million

years, envisioned spending my 42nd birthday

in the Oncology Unit at UAB, I am blessed beyond measure.

 

Beyond.

 

Measure.

 

Today, please pray specifically.....

 

*The Study Drug Rep or someone else

with the study will come meet with us SOON.

 

*Wisdom and guidance to make the right decision.

 

*That during the computer randomization,

 He will be chosen for whichever chemo drug he needs.

 

*The Hickman site will settle down and not become infected.

 

*We will be able to rest so we can be here for him.

 

*Peace that passes all understanding for him, as well as the rest of us.

 

*Our Families who are at home, while we are here.

 

Love you MUCH!

 

=],

In It All.....

I apologize for not posting yesterday,

but I was just too tired, both mentally and physically.

 

For those of you who have never

read my Blog, and are here to get updates

about my Daddy, let me give you a little background.

 

I wrote my first blog post

January 17, 2009 purely for therapeutic reasons.

 

Mainly, as a way to say what's on my mind,

but also to share what's going on with my kids, our family, etc.

 

It is my therapy.

 

Plain and simple.

 

It wasn't started for any other person.

 

Just me.

 

That will not change.

 

Now or ever.

 

You can say that sounds harsh, mean or even selfish,

but to be honest, which I always will be, I don't care.

 

It's really not meant to be and I don't

mean to sound smart, but it is what is is.

 

Now, on to my Daddy.....

 

He's hanging in there.

 

He had a good day yesterday,

but didn't feel as well as the day before.

 

He was complaining of some pain from the

Hickman and actually took pain medication twice.

 

Those of you who know my Daddy, know,

he must have been REALLY hurting to do that.

 

I told him, on more than one

occasion, there is really no need to hurt.

 

He doesn't have to be Superman.

 

I probably could have and

should have saved my breath.

 

They also started some fluids because

his blood pressure was running a little low.

 

It's pretty much supportive
care now until his chemo starts.

 

The plan is to repeat the bone marrow biopsy tomorrow.

 

Once those results are back,

probably, in a week or so, they will start chemo.

 

We still aren't sure what chemo 

treatment plan he will be receiving.

 

There are a few questions we want answered

before he agrees to participate in the drug study.

 

We are ready to get started,

no matter which treatment it may be.

 

I hate waiting for his treatment

to start, but that is out of my control.

We know God's timing is perfect.

I'm trying to remember that.

 

There are times, it's really hard.

I told you before, I know God has a plan.

Even in the heartache.

Even in the fear.

Even in the sadness.

Even in the darkness.

Even in the anger.

In it all, He has a plan.

Keep praying, Blog Friends.

Love you MUCH!

=],
 

Day One.....

Day One at UAB is coming to a close.

It's amazing what a difference a day makes.

It's really amazing what a difference sleep makes.

He slept last night for the first time in days.

He's had an appetite today for the first time in days.

He's felt better than he has in days.

It's days like today that could
make you question a grim diagnosis.

We haven't, but he's felt that good.

I don't want you to think we are all
sitting around in denial, because, we're not.

It's just, he's had a good day.

I mean, a really good day, and a productive day.

 

He had a Hickman placed today.

 

We are really thankful to have it so

he doesn't have to be stuck over and over.

 

We met with the Dietitian this morning.

He is on a special diet because of his low WBC.

The basic jest of it.....
*no undercooked meat
*no fresh vegetables
*no thin-skinned fresh fruit
*no meringue
*no fountain drinks
*no soft serve ice cream
*no buffets or salad bars

Bottom line, it needs to be processed,
pasteurized, etc., because his WBC is so low.

We can't take a chance on him catching a bug,
as he has no cells to fight it off, like you and I do.

We also met with his Doctor
to figure out where we go from here.

He has the option to have standard induction
chemotherapy or participate in a trial drug study.

His Doctor at the previous
hospital sent us to UAB for the trial drug.

We feel like that is the way to go, but we are praying
for wisdom and guidance to make the right decision.

Even in the trial, there's no
guarantee he will actually get the study drug.

It is a completely computer randomized
determination and can't be manipulated.

That's just part of doing a trial.

50% get the standard regimen, the other 50% get the trial drug.

They told us the standard regimen is
the worse of the two, as far as side effects.

We want what's best for him and
what will give him the highest survival rate.

So, we ask you to pray specifically that
whichever chemo he needs, that is what he will get.

Thank you for all your love, support and prayers.

Keep 'em coming.

We need them.

Love you MUCH!

=],

We Have a Bed.....

Almost as soon as I hit "Post" yesterday

afternoon, we received the news UAB had a bed

available, we just had to wait on it to get cleaned and ready.

 

We finally transferred around 8 last night.

 

 



 

His Nurse at UAB met us at the door and within an hour of our

arrival, we saw a Pharmacist, the Doctor, and had blood drawn.

 

We have absolutely NO complaints

about the other Birmingham Hospital he

transferred from and I should have made that clear.

 

The Doctor at our 1st hospital wanted him

transferred to UAB for more intensive treatment.

 

He said if it was his "big brother" he would want him at UAB.

 

We appreciated his honesty.

 

My Daddy is really sick and for his best

chance of survival we need aggressive chemotherapy.

 

We will get that at UAB.

 

A normal WBC is 5-10, which is 5,000-10,000.

 

When my Daddy first went to the Doctor on 

Sunday, thinking he had the flu, his WBC ws 1.1 (1100).

 

Monday it was 0.9 (900) and Wednesday it was 0.5 (500).

 

We were told, without chemo,

his life expectancy is a month.

 

Chemo is his only chance for survival.

 

It's all we have.

 

 I'm not going to lie, chemo, for him, scares me to death.

 

He is already so sick, I can't imagine

him being sicker from chemo and living.

 

When it comes to family, I sometimes

wish I wasn't a Nurse and was oblivious to it all.

 

You never know why things happen the way they do, though.

 

As I said in a previous post, everything happens for a reason.

 

Nothing is by chance.

 

My Stepmother, Sisters and I know this

and cling to this with every fiber of our being.

 

We don't have any idea where this journey is about to take us.

 

Already, it has brought us to an Oncology Unit at UAB,

 which is something we never thought we would experience.

 

I know it will be hard, and difficult, but I

also know good things will come from this.

 

They already have.

 

Today, he will have a day filled with tests.

 

He will also have a central line placed.

 

Please keep us in your prayers.

 

We need them.

 

Love you MUCH!

 

=],

Even the Heartache.....

We received the diagnosis last night

that my Daddy has AML, a type of Leukemia.

 

He will be transferring to UAB for intensive

in-patient chemotherapy, as soon as a bed is available.

 

UAB is on diversion, so we are waiting on the call they have a bed.

 

We have no idea when that will be, but the sooner the better.

 

Needless to say, we are devastated

and our hearts are completely broken, yet, we trust in

God, and know He has a plan in ALL of this, even the heartache.

 

In the 4 days since my Daddy has been in the

hospital, we have witnessed God's handiwork in the way

things have happened and the people He has placed in our lives.

 

We know nothing, absolutely nothing, happens by chance.

 

Please pray for all of us, especially my

Daddy, as we being this difficult journey.

 

 

  Love you MUCH!

 

=], 

Birthday Party Time.....

We are getting ready to celebrate the birthday

of the cutest 6 year-old EVER this afternoon.....

 

 

 

His birthday is not actually until Tuesday,

but we are celebrating a couple days early.

 

Actually, we will probably celebrate all week.

 

=)

 

I can't believe this sweet, green-eyed boy will be 7.

 

It seems like yesterday I saw him

on the ultrasound for the 1st time.

 

I loved him before I met him.

 

Literally.

 

He has brought so much joy and laughter to our Family.

 

There are not enough words to tell

you exactly how much I love this boy.

 

I'm sure there will be pictures to follow.

 

This week is Thanksgiving.

 

I'm so excited.

 

Those of you that know me, know it is my favorite holiday.

 

I. LOVE. IT.

 

Mainly, because it is Christmas,

without the emphasis on presents.

 

It's about being together, enjoying

each other and being thankful for it all.

 

Yes, we should be thankful everyday,

but it's not everyday we all get to be together.

 

I hope you have a wonderful week, Blog Friends.

 

Love you MUCH!

 

 

 

=], 

A Dangerous Stupid Decision.....

Last Saturday we were in Auburn with our oldest daughter when we got the phone call every parent fears.

Our youngest daughter, Kylee, who had stayed home with my Mother-in-Law, had been in a wreck.   I have to tell you, that 2 hour drive home was, no doubt, the longest ride of my life.   Turns out one of her passengers decided it would be funny to pull up the emergency brake while they were going down the road.

Not only was it very stupid, it was very dangerous.   Pulling up the e-brake caused the back tires to lock up.   Kylee lost control of her car, went off the road and flipped, landing upside down in a ditch.

Thankfully, all 4 of them walked away unharmed.

It totalled Kylee's car.

  It literally makes me sick to think of the what ifs.   Had it not turned cold, the top would have been off.   They were wearing seat belts.   There were trees on both sides they barely missed.   I am so thankful they are ok.   But I would not be true to my Blog Family if I told you I'm not a tad bitter about the whole thing.   Maybe, a lot bitter.   I know the one that pulled the e brake didn't mean for them to wreck.   Like I said, it was a stupid decision by a 16 year-old.   But, they could have all been killed and we could have all been planning funerals this week.   Thankfully, we weren't.   Love you MUCH!     =],