Stay Strong,

Eddie

Good news is that his counts are steadily moving up.  His ANC (Absolute Neutrophil Count) went up to 619 today.  This is awesome.  I know some of you are asking, “What is that”? Neutrophils are what fights against infections.  When they are less than 1800 you are considered Neutropenic.  You are susceptible to an infection that’s why you are not allowed fresh fruits and vegetables and Eddie has to wear a mask every time he leaves the room.  Just to let you know how fast this number is raising his ANC was only 35 day before yesterday and it jumped 584 points in just two days.  They say these numbers can jump around, but it still shows positive that he is increasing because is ANC has been zero for over 2 weeks.  He can go home around 1000 and that just means that infection can still be moderate instead of severe.

Hopefully they will change his diet tomorrow to things like yogurt and stuff, even though a little bit ago I went to the cafeteria and bought him one and snuck it in the room and he did get it down with no problem.  This is a good thing.  He said it was strange having something in his mouth besides liquid.  Because he hasn’t eaten anything in almost a week.

Woo-hoo…….three days no fever, and two days no vomiting. 

Even when we come home please don’t think we won’t keep the website updated.  It may not be daily or every other day, but anyone who is interested please sign up by using the tab to the left to stay informed cause when I do I will send out an email to everyone on the list.  We won’t have internet at the house until we can get financial situated but we will go to his dads house and post updates on a regular basis.  And of course when he goes in for his first consolidation we’ll be back to daily posts.

I believe its all gravy from here until we get to come home.  Even though we still have a very long road ahead of us at least one of these sessions are behind us.  We miss you all and hope to see you soon.  We are going to try and plan a cook out after we get settled in.  Well I’ve rambled enough for now here’s the numbers.  The best thing is these numbers are coming up on their own.  No blood in a couple of days now.

Day 22

When the doctor finally made it in about 11 in the afternoon, he was very apologetic.  He said that Eddie should have never got put on the Ableset.  That was a drug used for long term treatment and didn’t fit what he needed.  So they permanently took him off of it then followed it up with that the Typhilitis that he had was not he life threatening one.  The funny thing is on the internet they don’t list any different types of Typhilitis, just one.  The one that basically tells you your whole life is about to change.  Well the good news is he is already healing up.  They took him off food, and he was only allowed to drink water.  He had to be on complete bowel rest and let the antibiotics get the inflammation down in his intestines.  The whole time running high fevers.

The crappy thing about this whole mess is the fact when you have an intern coming into your room 11 at night telling you that you have some deadly infection then walk out and say that the attending doctor will explain it in the morning then have to experience the scare of your life on some “drug” and then be told in the morning after you tell your family the news and have them all worried is “oh, I’m really sorry about last night” is really a pain in the butt.  I had to turn around and call everyone to let them know that it wasn’t as bad as they said, but he did have an infection, but it’ll be alright cause it’s treatable.  Do these doctors understand that we hang on every word they say hoping to finally get a clean bill of health and go home.  It not only makes you look like a fool to your family but also like you don’t know what you are talking about when you’re only telling everyone verbatim what the doctors tell us, then stuff changes not even 12 hours later.

Well enough about all that mess.  The only thing we are focusing on now is that the doctor told us this morning that if everything goes well, we will be able to come home this weekend.  We can’t wait.  We are also glad this week is over; it has been a rough one for Eddie.  The emotional aspect was enough to drive us nuts along with Eddie throwing everything up and running fevers of 104.  The fevers have finally started to subside.  

Today he didn’t even run a fever.  His mom, Aunt Jo, & Uncle Marty came up to visit.  It was so nice to see their smiling faces.  Isn’t it funny how in times like these that it brings families together?  Well here are the numbers.  We should start seeing more of an increase.

Day 20

Platelets	7.1
Hemoglobin	8.6
Red Blood Cells	2.76
White Blood Cells	0.96

Yesterday started out the same, Eddie's stomach was severely cramping and having a fever of 100-104.  Their feeding him Tylenol like it's candy and the fever will not break.  It goes down for "maybe" and hour then spikes.  He got to hurting so bad last night they gave him morphine.  As soon as the nurse took the syringe from his port in his chest he went to vomiting.  He laid down in the bed with me when the nurse came back in with finigrin.  After that I told him that he should get in his bed with the cooling blanket and because the morphine and nausea medicine should start kicking in and maybe he can fall asleep.  He did, but as soon as I turned the lights off and rolled over, I felt the little booger pulling my covers back and slipping into bed with me.  I didn't have the heart to tell him no, so we slept snuggled all night together in a hospital bed.

This morning his stomach was cramping again but he wasn't nauseated, so I tried to get him to eat some breakfast.  He got a couple of bites then started vomiting.  The nurse brought him some meds that worked for a little while longer until he was sitting there and out of the blue sat straight up and went to vomiting up bile.  This was the last straw for me.  I went to the nurses station and told them what he was throwing up and demanded that there be something done.  The doctor came in and I know I might of been a little out of the way, but I didn't care.  I told him this was uncalled for, he's been in severe pain for over a week and they haven't done a damn thing for his stomach except cover it up with morphine.  I told him I know it's important to find out what is causing the fever, but at least they can look at his stomach and give him some sort of relief.  So the doc ordered another CT scan of his abdomen and they found the problem.  More than likely the problem causing the excessive high fevers too.  They have diagnosed him with Typhlitis.  The thing is, I've been researching this on the internet and I don't like what it has to say.  It's scary and it's life threatening.  Typhlitis is a fancy name for inflammation of the bowels.  But since he is neutropenic, he has no way to fight it.  They have taken his food away for a few days all he can do is drink water and Gatorade and is now bed ridden.  Yep that's right, Eddie isn't allowed to get out of bed until the next whenever.  We'll find out more from the attending doctor in the morning.  I'll let you all in on the details then.  I'm sure I'm leaving out a lot of other details, but I am really tired and need to get some sleep.  Tomorrow I will add anything that I may of forgotten.  Sorry I don't have the numbers for today.  We had an idiot for a nurse that couldn't walk and chew bubble gum, so we never got the numbers.  We love you all.

Drum Roll Please....................................................................................

His bone marrow is clean.  No Leukemia showed up in it.  This means that we will be able to come home in two weeks as long as everything continues to go as planned.  They want to monitor his blood and make sure that it continues to produce healthy normal cells.  We will be able to be home for a few weeks then back to the hospital we go for another round of chemo.  But we just got through the biggest hump.  The induction phase is now over, time to look towards the consolidation phase.

The doctor talked a little about the bone marrow transplant with us today.  I'm not sure what to take on that.  He said that it would come down to a decision to make if the time comes.  The transplant is highly effective, but highly dangerous.  Some patients don't make it.  To continue chemo they said it's not as effective, but safer.  They said in a few months is when we really need to start thinking about it and talking it over with the specialists.  I really can't go into to much here because I don't have enough information on it.

Well the fevers have continue through the day today.  The highest it got was 104 before he had to go down for a CT scan of his abdomen.  He just can't get his fevers to break.  I think he just likes keeping the nurses on their toes....lol.  The fever came down a little bit today, long enough for him to receive 1 bag of blood and 1 bag of platelets.  Oh yeah, we knew this time would come but his hair is beginning to fall out.  The hair on his head is starting to shed, but his facial hair is coming out in patches.  He can't shave it off because they won't let him have a razor, but he used his beard trimmers to take it down.  I'm sure his hair on his head will start coming out by the patches in the next day or two.  Oh well, he's still handsome to me.

Well Eddie's mom & Aunt Jo got me the information on the account they got set up for him.  Thank you so much for doing that for us.  And also I'm sure you noticed the "Donations" tab to the left, if you would like to donate by PayPal.  I just want to say thank you so very much to James & Casey Clark & Colin & Stephanie Hutchinson for their kind donations.

If you would like to mail payments or stop by the bank you may do so.  Here's the info for you.

Peoples First Community 
1302 Ohio Ave
Lynn Haven, FL  32444

Make Checks/Money Orders Payable To:
Benefit Account for Eddie McNeil Jr.

Account # 5466057

Well here are the numbers for the day.

Day 15

He had his bone marrow biopsy this morning about 10.  That went alright.  Kind of drawn out though because since this is a "teaching" hospital, the doc that did it was kind of dingy and couldn't get the needle in the right place.  They are suppose to let us know something tomorrow evening or first thing Wednesday morning.  Let's keep our fingers crossed.

With all of this going on, I have really come to realize just how lonely it is here.  I sit here all day and stare at the walls, either watch t.v. or just play on the internet.  I'm going stir crazy.  Sometimes I just wish there was someone I can just sit and talk to for a little while in person.  I have met a nice lady across the hall whose husband has the same type of Leukemia that Eddie has, so occasionally in passing we'll chat for a few.  But we return to our husbands to be with them and support them.  I tell you what, there are a lot of things that people take for granted in their everyday lives.  Being here with no transportation, no family, no friends, no one to talk to, and your loved one lying in a bed to sick to speak.  It takes a toll on a person.  I sit here so sleepy, but fight to stay awake just to watch him sleep.  Listening to all the noises in the hall, and the air conditioner switching off and on.  I told Eddie that I miss the outside so much, when we get home I'm going to lay out in the sun everyday for a month, just to feel the warmth of sun, wind on my face, and the smell of mother Earth.  Well I guess that's enough about me.  I just wanted to vent for a few.

Well Eddie's mom and Aunt Jo went today and opened a bank account for donations.  The article has been written and the account information will be placed on it and put into the News Herald.  I will let everyone know when this takes place.  They also said something about possibly having a fish fry.  I want to say thank you again to everyone that has lent a helping hand.  You are very much appreciated.  Here are the numbers for the day, maybe tomorrow night I'll have good news.

Day 14

Platelets                    The lowest yet	3.7
Hemoglobin	8
Red Blood Cells	2.61
White Blood Cells	0.46

There once was a woman who woke up one morning,
looked in the mirror,
and noticed she had only three hairs on her head.

'Well,' she said, 'I think I'll braid my hair today.'
So she did
and she had a wonderful day.

The next day she woke up,
looked in the mirror
and saw that she had only two hairs on her head.

'Hmmm,' she said, 'I think I'll part my hair down the middle today.'
So she did
and she had a grand day.

The next day she woke up,
looked in the mirror 
and noticed that she had only one hair on her head.

'Well,' she said, 'Today I'm going to wear my hair in a pony tail.'
So she did
and she had a fun, fun day.

The next day she woke up,
looked in the mirror
and noticed that there wasn't a single hair on her head.

'YEA!' she exclaimed,
'I don't have to fix my hair today!'

Attitude is everything. 

Be kinder than necessary,
for everyone you meet is fighting some kind of battle.

Live simply,

Love generously,

Care deeply,

Speak kindly.......

Life isn't about waiting for the storm to pass...

It's about learning to dance in the rain!

Eddie was laying in his bed, changing channels or something when he clunked himself in the face with the remote.  Now he has a black eye.  The nurse said normally it wouldn't of blacked his eye, but due to his platelets being low it bruised.  It was the ongoing joke that I did it. 

One of our trips down stairs today really made me angry.  While we were standing on the balcony looking over the side at a car, this woman had her stuff just sitting there.  She wasn't even 20 feet near it.  She seen Eddie & I standing there and made it apparent that she thought we were going to steal something.  She was kind of obnoxious about it telling someone to watch her stuff while she went to the restroom.  So some guy got up and walked over to it and stared us down as if we were thieves.  This really chapped my hide so I followed her to the bathroom and said "Excuse me ma'am, but me and my husband were just looking at the car below.  We weren't going to mess with your stuff."  So of course she was apologetic.  I just wanted her to know that I knew what she was insinuating and not every one in this world is out to do wrong.  I know maybe I should of let this bother me, but it just caught me at the wrong time and I hate when people judge.

Well tomorrow is the day (Monday).  So hopefully we should know something by Wednesday.

Day 13

Platelets	12.2
Hemoglobin	8.3
Red Blood Cells	2.66
White Blood Cells	0.50

Day 12

Platelets	21.9
Hemoglobin	8.6
Red Blood Cells	2.79
White Blood Cells	0.65

Day 11

Platelets
9

Hemoglobin
9

Red Blood Cells
2.94

White Blood Cells
0.6 2

No fevers yet today.  But Eddie has felt real weak.  His mouth is bothering him.  One part of his gum is a little swollen and the edges of his mouth has split on both sides.  This keeps him from opening his mouth wide to eat.  He does try though.  We went to the North Pavilion today for dinner.  Eddie ordered shrimp & fries and I had a grilled 3 cheese & ham sandwich.  It was kind of expensive, but a change from the everyday hospital food we normally get.

We went outside maybe three times today to smoke, and I did laundry.  Most of the day we just kind of lounged around.  Oh yeah, we got approved for Medicaid & Foodstamps.  It was actually kind of easy.  I applied online and all I had to do is have a telephone interview with the case worker in Panama City.  We don't qualify for Cash Assistance because Eddie would have to participate in the one on one program, which would mean that he would have to work.  I explained to the lady that the doctors aren't releasing him to work for a year and SSDI won't start paying out for 6 months.  She said there wasn't anything she could do.  As far as paying the electric bill and vehicle insurance every month we are going to have to find the money else where.  I'm sure there are charity services that will help with the electric bill, but I doubt they pay car insurance.  Our insurance has already lapsed since we've been in the hospital.  We'll more than likely have to borrow a ride to the doctors and stuff until something happens financially.  I don't know, I guess take one day at a time.  But at least we'll have food in the house to eat.  Maybe no electricity to cook it and cool it, but there will be food.  Just kidding.  I'm sure there will be a way to pay the bills when they come due, we just have to have faith.

I just want to say thank you again to our friends & family that are supporting us through this time of need.  We love yall.

Well here are the numbers for the day.

Day 10

Platelets
24

Hemoglobin
9.2

Red Blood Cells
3

White Blood Cells
0.6

Willie left here about 6 this evening.  We had Starbucks and Papa Johns Pizza.  Boy, did I enjoy eating food that didn't come from the hospital.  Eddie ate three slices of, if I knew he would eat that good every meal, I would order him pizza all day everyday. 

He has officially reached Nadir, from what the nurse told me.   Here are his numbers.  He should remain leveled out for about a week and then the numbers should start coming up. 

Day 9

Platelets
11.7

Hemoglobin
7.7

Red Blood Cells
2.47

White Blood Cells
0.70

About noon today Eddie came off of the chemo.  I am so relieved that it is over with.  It's hard looking at that I.V. pump everyday knowing that their is poison pumping into his body.  But of course we still have a bumpy ride ahead of us the next two weeks. 

Today was the beginning of it.  About 6 he began to run a fever of 99, every 30 minutes I check his temperature, until it read about 100 and I called the nurse.  She then took his temp and it read 100.5, so she had to call the doctor and of course he ordered some blood work.  With some Tylenol and antibiotics running through his "Hickman", he's feeling better now.  The fever went down and now he's sitting here playing his new video game he got for his birthday.

Willie's gonna spend the night with us here in the room.  I guess we're gonna have a slumber party.  LOL.  I'm sure Eddie really enjoys having his best friend here with him.  I think Jason & Shelby will be coming up in two weeks if we are still here.  I am so glad that we have such wonderful friends who are there for us.  It always seems like when situations are at their lowest, this is times when you find out who your real friends are.

I think we should know something by Monday if we will be able to come home soon.  Everybody please send him "energies" & "prayers".  He will officially reach Nadir in two days.  This is going to be the time he needs to receive them the most.  I will continue the count, but of course relabeling it Days of Treatment.

Day 8

Platelets
22.5

Hemoglobin
8.1

Red Blood Cells
2.60

White Blood Cells
0.76

Eddie's dad, Tammy, & Gabe came up today.  It was great to see them.  We haven't seen Gabe in two weeks as of Saturday.  At least he's young enough right now he doesn't understand why we aren't home with him.  He's not sure what to take of his daddy being "sick". 

Eddie's appetite has really been good lately.  Ever since they started giving him Nexium, he's been eating about the same amount of food he used to eat, but instead of eating it all at one meal he breaks it up throughout the day.  I don't care, as long as he has the calorie intake.

When the doctor came in this morning he started talking about the bone marrow transplant.  We won't know if Eddie needs one until sometime next week.  But he wants to go ahead and check his brother Jeff to see if he is going to be a match.  The odds are only 1/4.  Not really that great of odds but better than if he has to get it from someone else.  If Jeff doesn't match, his name will just go into a data base and we sit back and wait.  And I'm assuming that Eddie would just continue chemo treatments until a donor is available.

Doctor came back from the dentist and said that the other two teeth that they missed during fillings will just have to wait until Eddie can have them done as out patient services.  Well I guess that will be alright, I was really just hoping that he wouldn't have to worry about dental work for awhile.  I am so glad that they took care of the majority of them.

Well no blood today, but I am sure that he will be getting a pint tomorrow.  Platelets are looking really good today, but that is to do with the bag he got last night of them.  I am so proud of how well Eddie has been handling all of this.  Sometimes when I look at him or talk to him, I don't even realize that he is "sick".  He has color back in his face and he seems happy.  I'm keeping my fingers crossed that he does really well for the next two weeks.

Well enough for tonight.  Just remember every night I will be posting how is doing, so don't forget to check back.

Day 7

Platelets
38.3

Hemoglobin
8

Red Blood Cells
2.60

White Blood Cells
0.74

Well we talked to the doctor this morning and I think they are going to send Eddie to the dentist again once his counts come back up, cause they forgot 2 teeth that need to be filled.  After those are done, his mouth will have a clean bill.

Dr. Baird said that if everything goes right for this treatment of chemo, we may actually be able to go home in 3 weeks.  Well I won't get my hopes up, we'll just wait and see how his bone marrow test goes in 8 days.  But all in all, he is doing really well.  Tomorrow is the last day of chemo....woohoo

Check out the new links that I have added to our page.  As you can tell what kept me busy today.

Day 6

Platelets
14.7

Hemoglobin
8.1

Red Blood Cells
2.58

White Blood Cells
1.15

Nothing much happened today.  Eddie got his go-go juice (pint of blood) and had a little more energy later on in the evening.  We spent a majority of the day being extremely bored.  I walked over to the "Town House" and took some Gatorade's over there.  They give Eddie 3 with every meal and there is no way he will drink all of them including the juice, milk, and tea they give him.  I think we have nearly 2 cases saved up.  Hell, since he's going to get charged for them anyways, might as well keep them.  I don't know if we'll drink them when we get home, but Gabe sure will enjoy them.  Well maybe more news to report tomorrow.  Stay tuned.........

Day 5

Platelets
22.1

Hemoglobin
7.7

Red Blood Cells
2.44

White Blood Cells
1.45 ~ not really sure why this one gained a 0.01, haven't had a chance to ask.

Eddie gets aggravated with me because I stay on him about eating.  He hasn't had much of an appetite over the past two weeks, even though he can have whatever he wants.  Today I was so proud of him.  He ate really good at all three meals, plus snacked in between.  That alone really made my day.

I think tomorrow they are planning on giving him another pint of blood.  So maybe he'll have another good day, cause he'll be getting his go-go juice.  I want to say thank you to his Aunt Jo and his mom for the cards and pictures that they sent.  It is really nice hearing from home.  If anyone is interested in sending him a hello letter or a card, here is the address and telephone number.

205-975-1619

Well here are the numbers for today.  More news tomorrow.

 Day 4

Platelets
23

Hemoglobin
8.2

Red Blood Cells
2.59

White Blood Cells
1.44

When we get home, I’m going to try and get food stamps and AFDC.  I hope they can help us.  It is going to be difficult for me to find a job until this is all over with because I am going to have to be there taking care of him during his critical times.  I know Eddie's mom and brother are taking care of the electric bill this month.  I am sure this will all come together in time, but it is stressful just thinking about the next step I have to make and prepare for.  We applied for social security and disability, but the social worker here said it takes 6 months to start receiving a check.  Well I've rattled on enough for tonight.  I will have more later.  Here are the numbers for today.

Eddie was really fatigued today.  After his 2nd push of chemo he took a couple hour nap.  His red blood count was really low, so they gave him another pint of blood.  A few hours after the blood, he got a little pep in his step.  I have nick named the blood his go-go juice.  They say the red blood cells are what gives him energy.

There's really no news today......so here are the numbers.  Stay tuned for what tomorrow brings.

Day 2

Platelets
35.2

Hemoglobin
7.6

Red Blood Cells
2.38

White Blood Cells
2.31