Sonya & Eddie's Page

I know we haven't updated in a while mainly due to the lack of internet access. So I thought I'd update everyone that is keeping up with this. So here goes.... It feels so good to be back home (sleeping in my own bed, not getting woke up for my vitals to be taken, good food, and best of all getting to see my friends and family) We are doing good, and there's so much going on right now. My mom, aunt, and cousin have taken on organizing a fund raiser for me, we are getting ready for Gabe's birthday party on Saturday, and trying to get all my medical stuff situated. Yesterday we had to drive to Gainesville to Shand's hospital for a consultation visit. It was a long trip, we had to wait on the doctor for over an hour and when we finally sat down and talk with her, she basically told us what we knew all along. Plus I got another bone marrow biopsy so I should know Friday what my leukemia status is. But we got some good news this morning, Sonya called Dr. Mahmood (the oncologist that will tracking my progress after chemo) and he is talking to the doctor at Shand's to see if I can just get my chemo and after care done here in Panama City. This would be great because that would mean we wouldn't have to drive to Gainesville once a month and stay for a week. It would save us a lot of money we would have spent in gas making those long trips. We are still keeping our fingers crossed that Dr. Mahmood will come through. Regardless I am starting my first round of consolidation chemotherapy on Monday the 16th. So it’s back into the fire for me. I do have to say though all in all I have felt a lot better lately, back to my old self, but I know I have a long road ahead and I will keep my chin up and with the support of my friends and family I will see this through til the end.

Stay Strong,

Eddie

Everything is still moving in an upward motion.  Eddie seems to be getting over the Typhilitis really well except for the fact that he doesn’t want to eat (drink) his meals due to the fullness that he has in his belly.  I cornered the doctor in the nutrition station today and gave him the rundown of how he was feeling and what he was experiencing because this morning when they came in they didn’t give either one of us a chance to speak before running out of the room.  The doctor decided to run another x-ray and would have a gastroenterologist take a look at the film and if they found anything, they would let us know something.

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

Well it has been one month today that we have been here in Birmingham.  Sorry I haven’t written anything in the past two day, but we just went through a rough patch and we are now on the upside of this horrible scare that we had.  The Typhilitis that I wrote about in my previous blog really gave us a tremendous scare.  Friday morning at 4 in the morning the doctor prescribed him an anti-fungal antibiotic called Ableset.  The last thing the nurse said is some patients experience chills as a side effect.  So when decided to finally go to bed about 5:30 in the morning when all of a sudden Eddie started having these convulsions that turned out to be what they call chills.  It was really scary for us because between him shaking the whole bed and every muscle in his body tensing up, it was kind of hard to get a nurse in there to tell us what was going on.  They gave him Demerol and Finigrin to calm him down and he went to sleep.  About 7:30 in the morning they woke him up for morning meds and he had another episode.  We were told that he would continue on this medicine and would experience these “chills” continuously.  We weren’t looking forward to it because it was a horrible experiences for the both of us especially him.

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

First of all, I want to apologize for not posting yesterday.  There has been so much going on here it's unbelievable.  After receiving good news the day before, we had it all snatched out from under us today.  Let me go to the beginning.

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.

Well we've been here 3 wks & 3 days.  But at least now I can bring you some sort of good news.  Eddie's bone marrow test came back this evening about 5 o'clock. 

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