Chemo Started.....

I stayed with Daddy last

night and he had a restless night.

 

I'm not sure if he was nervous about

starting chemo, or just not feeling well.

 

Truth be told, it was

probably a combination of both.

 

He was pretty weak when he got up this morning.

 

It's then, you start the process

of elimination to find the cause.

 

Blood Sugar.....Perfect

 

Blood Pressure.....Perfect

 

Pulse.....Perfect

 

Temperature.....Perfect

 

O2 Sat.....Perfect

 

Then, we got his labs back and found the problem.

 

His Hemoglobin was 6.9.

 

If it is less than 7 they transfuse.

 

So, he got blood this afternoon.

 

Hopefully, he will be feeling better.

 

He did get his first dose of

chemo this morning and tolerated it well.

 

I may have told you this, but he

will get chemo once a day for 5 days.

 

I honestly can't keep it straight

who I've told what, so bear with me.

 

My stories are running together like his stories.

 

Ha!

 

That made me laugh.

 

Those of you that know him, KNOW his stories.

 

=)

 

I wanted to share the devotion for today

from a book given to me Tuesday by my Sister-in Law, Gloria.

 

It's out of a book called, "Jesus Calling."

 

Each day is written as if Jesus is speaking directly to you.

 

January 31

I AM YOUR STRENGTH AND SHIELD. 

I plan out each day and have it ready for you, long before you arise from bed.

I also provide the strength you need each step of the way. Instead of assessing

your energy level and wondering about what's on the road ahead, concentrate

on staying in touch with Me. My power flows freely into you through our open

communication. Refuse to waste energy worrying, and you will have strength to spare.

Whenever you start to feel afraid, remember that I am your Shield. But unlike inanimate armor, I am always alert and active. My Presence watches over you continually, protecting you from both known and unknown dangers. Entrust yourself to My watchcare, which is the best security system available. I am with you and watch over you wherever you go.

 

The Lord is my strength and my shield;
my heart trusts in him, and he helps me.
My heart leaps for joy,
and with my song I praise him.

Psalms 28:7 (NIV)

 

Give your entire attention to what God is doing

 right now, and don’t get worked up about what may

or may not happen tomorrow. God will help you deal

with whatever hard things come up when the time comes.

Matthew 6:34 (The Message)

 

When I am afraid, I put my trust in you.
⁴ In God, whose word I praise—
in God I trust and am not afraid.
What can mere mortals do to me?

Psalms 56:3-4 (NIV)

 

I am with you and will watch over you

wherever you go, and I will bring you back to this land.

 I will not leave you until I have done what I have promised you.

Genesis 28:15 (NIV)

 

 

I didn't read it until I got home from the hospital this afternoon.

 

Literally, my mouth fell open and I just shook my head.

 

Thank you all for sharing in this journey.

 

I can't tell you how much we appreciate each of you.

 

Love you MUCH!

 

 

=],

Study Approved.....

Dr. Erba came in this afternoon and told us the

repeat bone marrow biopsy confirmed the diagnosis of AML.

 

I wasn't surprised or expecting anything different.

 

He also told us Daddy was

selected to participate in the drug study.

.

The computer randomization was done

and he will receive the study drug, clofarabime.

 

It is said to have less side effects than the traditional AML treatment, 7+3.

 

I had already decided, in my mind, it would

be the standard treatment,  7+3, so I thought I

would try to find a Bible verse related to 7:3 that spoke to my heart.

 

I searched all combinations of 7:3, 1:3-7, 3:7 and found nothing.

 

Absolutely.

 

Nothing.

 

Now, I know why.

 

God already had plans for

him to receive clofarabine not 7+3.

 

So, after what seems like waiting

a lifetime, chemo starts in the morning.

 

We are beyond thankful at this news.

 

Without a doubt, God's timing is perfect.

 

Please pray for us as we start a new part of this journey.

 

We are all still trying to figure out this new "normal."

 

I will update tomorrow.

 

Love you MUCH!

 

=],

Check.....

 

Meeting with drug trial representative.....Check.

 

Signing consent forms.....Check.

 



Repeat bone marrow biopsy.....Check.

 

I am so thankful for your prayers and

am truly amazed watching God work.

 

I mean, in all actuality, we didn't

think we would talk to anyone from the drug

study today, after they told us the regular rep is on vacation.

 

We did.

 

We didn't think the bone marrow biopsy

would be done today since it was so late.

 

It was.

 

We can see God working in every step of this journey.

 

We know that good things will come out of this storm.

 

They already have.

 

We've crossed paths with some incredible people.

 

We've gotten closer as a family.

 

Words have been spoken that

should have been said years ago.

 

We have seen a complete outpouring of love

 and support from all over, even from total strangers.

 

Old wounds have begun to heal.

 

New bonds have been formed.

 

I personally have never been more

thankful for friends and family than I am today.

 

I've learned it really is the

small things in life that matter most.

 

I've been reminded that even when

I don't know what to pray or how to pray,

His Spirit is there to intercede on my behalf.

 

_____________________________________ 

 

²⁶ In the same way, the Spirit helps us

in our weakness. We do not know what we

ought to pray for, but the Spirit himself

intercedes for us through wordless groans

Romans 8:26

NIV

_____________________________________   

 

^26-28 Meanwhile, the moment we get

tired in the waiting, God’s Spirit is right

alongside helping us along. If we don’t know

how or what to pray, it doesn’t matter. He does

our praying in and for us, making prayer out of

our wordless sighs, our aching groans. He knows

 us far better than we know ourselves, knows our

pregnant condition, and keeps us present before God.

 That’s why we can be so sure that every detail in our

 lives of love for God is worked into something good.

Romans 8:26-28

The Message 

_____________________________________

 Several of you have asked and

I should have already addressed it.

 

My Daddy is not a candidate

 for a bone marrow transplant.

 

They told us that several days ago.

 

I appreciate all of you who have offered to

be tested, to give blood on his behalf, and, to those

who have offered their homes, food, time, and money.

 

We continue to need your

prayers, love and support most of all.

 

 

My sick Daddy with an edited Instagram tan.

 

 

My Daddy and I August 2012

at Kylee's 16th birthday party.

 

We're hanging in here.

 

Waiting on the next step.

 

Praying it comes soon.

 

We also continue to pray the computer

randomization will pick whichever chemo drug is meant to be,

 

Love you MUCH.!

 

=],

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!

 

=],