Wednesday, August 26, 2009

We are HOME!

They released Madilyn from the hospital this evening around 6:30, so we made a mad dash out of there before they changed their minds and decided they liked us too much to let us go.

Madilyn is thrilled she did not have to leave with a pick-line, so no more IV antibiotics. Just oral for now. Hopefully she will continue to do good on that. She still hasn't experienced any pain from the surgery, and is very glad to be home and get to sleep in her own bed tonight. Me too, for that matter. If anyone comes in my room to wake me up tonight, they might get a pillow upside the head!~

So for now, we have to go see Dr. Shore on 8/31 and then Dr. Fabregas in two weeks. His assistant is supposed to be contacting me about scheduling her next surgery, which should happen in about three weeks. Luckily, it will be an outpatient procedure, so no more overnights, hopefully!

Thanks again for everything. Madilyn is so loved, and I appreciate all the concern and well wishes for her.

I'll keep you posted on any new details and will try to get some pictures on here tomorrow.

Still Hanging in there

We survived another night here at the hospital. It was definitely better than the first night, but nothing beats the comforts of home.

Madilyn is doing great. She isn't in any pain, other than she hates having the IV stuck in her hand. Dr. Fabregas came by this morning, and said her cultures are still not growing, which is the same from the first time around. He said we may get to go home this afternoon, depending on what Dr. Shore decides. Dr. Shore said last night that he didn't think she was going to need the pick-line, so hopefully we will leave here with just oral antibiotics. So we are just waiting to see when Dr. Shore feels she has had enough of the IV, and we will go from there. I will keep you updated.

Tuesday, August 25, 2009

Madilyn says Thank You

Madilyn wanted to say Thank you to her Uncle Bill and Aunt Debbie for the balloons and candy. We love the singing balloon. It gave us a good laugh!

Also, thanks to LaVonne Gaw for the balloons and the gift card. Madilyn was very appreciative!

Thanks for thinking of her during this time. You guys are great!

Monday, August 24, 2009

Update on Madilyn's Surgery

Real quick I wanted to update everyone on Madilyn. Her surgery went well. The mass is not malignant, just as we thought. So Dr. Fabregas continued with his plan and removed the mass from inside the bone, and placed a concrete spacer inside the bone that will stay in place to seep antibiotics into the bone. She is also on IV antibiotics. Dr. Shore, her infectious disease doctor, has also been by to see her, and will be monitoring her during her stay.

We will be here at the hospital for several days. The number to her room is 404-785-4235 and she is in Room 235. Feel free to call us, we would love to hear from you.

Madilyn was in surgery for two hours, and has been sleeping pretty much since then. She doesn't feel any pain now which is good. Hopefully she will be able to sleep good tonight, and will feel more like herself tomorrow. We will see.

As for now, that is really all I know. The doctors' are waiting on some results from pathology to determine more fully what we are dealing with and what the future holds.

I will keep you updated as often as I can.

Special thanks to the Dentons! Thanks so much for thinking of us and for the gift. Madilyn loves to feel special, and you guys helped! Thanks again!

Sunday, August 23, 2009

Details

Madilyn is scheduled for her surgery tomorrow, Monday 8/24/09. The surgery is scheduled for 1:15 pm, but most likely will be later than that. Dr. Fabregas does all his surgeries on Mondays so she is set to be his last one of the day since he doesn't know how long her's will take, so if he has any previous surgeries that run off schedule, we will be late as well. We still have to be at the hospital by 11:00, so we will have quite a bit waiting to do.

She is still set to be in the hospital for at least three days. I will be staying with her. I told Donny after Monday, he may as well go back to work, since one of us needs to keep our jobs. My job is very understanding and my boss told me to do whatever is best for my family and not to worry about work. Seeing as how I won't even have a job in three more months, work is the last thing on my mind. But of course, if you really know me, you know that is a lie, because you know I am obsessive compulsive and a tad bit controlling, so I hate to miss work. But for this, I can bend a little.

Donny's mom is coming over today from Alabama to help with the boys. One less thing for us to have to worry about.

Anyhoo, in case you need to know, we will be at

Children's Healthcare of Atlanta at Scottish Rite Hospital.
1001 Johnson Ferry Road NE
Atlanta, GA 30342.

The phone number to the hospital is 404-785-5252. Once we are admitted and have our own room number, I will let you know. Madilyn would love to hear from you while at the hospital.

I will try and post an update after surgery tomorrow.

Thanks again for everything.

Wish us well!

Wednesday, August 19, 2009

Kicking Murphy Out

Okay, Murphy, get up off my couch, pack your bags, and hit the road!

Yeah, that's right, I know you hear me.

This time I mean it. It is time for you to go.

You have plagued me long enough.

Stupid Murphy.

I'm tired of you coming and going as you please, in and out, in and out. This is not a hotel.

This is me, and this is my life.

And my families' life.

And we all won't you gone.

For good!

We have been working so hard to get rid of you for good.

Give me a little more time, and you will be out on the curb.

Even though you just threw us yet another curveball, I am sticking to my goals, and you will pay the price.

See ya!


Now, to those of you who are reading this - you may not have any idea what I am talking about.

Ever heard of Dave Ramsey?

Yeah, he is pretty much awesome. I read his book "Total Money Makeover" while we were on vacation, and I was healed! Even though I have been on a strong kick for a while working hard to eliminate our debt and save money, and live below our means, this book energized me and recommitted me to changing the way I look at money and spending.

So who is Murphy?

Well, none other than that old pest we all know and deal with constantly in our lives, aka Murphy's Law
. It fits so perfectly into the long line of excuses I have for why life is the way life is.

But no more. I am kicking Murphy out. According to Dave, when you are financially secure, Murphy has no power in your life, because you have the money to deal with life's little crises, and what would have seemed like a major problem to someone who is broke and in debt up to their eyeballs, suddenly only becomes a minor setback, if even that.

It may take me a while to get him out, thanks in large part to what is going on with Madilyn (who knows how much all this is going to cost me), but I am determined to rid my life of him.

Just wait and see.

In time, Murphy will be gone

For good!

Monday, August 17, 2009

MRI Results

Dr. Fabregas called me this afternoon with the results from Madilyn's MRI she had yesterday.

Not sure where to start with all this. But it looks like the next few weeks will be difficult for Madilyn, to say the least.

The MRI shows that the mass is definitely inflamed and still active. The radiologists that saw it, of course said the same things they said from seeing X-rays and CT scans - it looks just like what they see when they are looking at a malignant tumor.

The next part gets a little tricky to understand. This is when I wish I had a doctor in the family to talk to about all this to help me understand.

First, he will biopsy it again. If the biopsy comes back negative, then he will remove as much of the mass as possible, insert a stint that contains antibiotics that will stay in place for two weeks, allowing the antibiotics to seep into the bone and kill any infection that is left. She will be in the hospital for at least several days so she can be on IV antibiotics and be monitored closely by him and infectious diseases. At the end of the two weeks, she will have another surgery to remove the stint and clean the area out as much as possible to expose as much good bone as they can.

Now, let's back up a little, because believe me, I was confused as well. When you say, "if the biopsy comes back negative," negative for what?

Malignancy.

But haven't we already ruled that out with the first biopsy? Well, yes, at that time.

In his own words: "Anytime I perform surgery on a mass, I will always biopsy it first just to be certain it is okay to proceed with removing it."

Me: "But is there a chance that this is malignant, because I thought we covered this before that what was already there could not turn into a malignancy."

Him: "Well, yes, the cells themselves cannot turn into that. But you have to remember that the cells we initially took in the first biopsy were just a tiny amount of cells from a rather large mass, and I cannot tell you that the mass did not contain cells that were not malignant, just the cells we took did not. So I cannot tell you that the biopsy will not come back positive for a malignancy. I do not feel that it is malignant, but again, I cannot tell you that it isn't, because there is a very small chance that it could be. We will not know until we get in there. My plan is to biopsy it, and if it comes back negative, proceed with as we have discussed."

I feel confident that it is not a malignancy, but rather some type of infection. I feel that removing it is the best course to take. We have known about the mass for twelve weeks now, and haven't seen any improvement or signs that it is going to try and heal itself, so I would rather it just be removed, so her bone can begin to heal. We knew from the beginning that additional surgeries were a strong possibility.

He wants to do the first surgery on Monday, a week from today, and she should expect to be in the hospital until at least Wednesday.

So, for now, that is all I really know. I'm sure I will think of lots more questions to call him and ask him about between now and Monday. But until then, this is what we know.

Please keep Madilyn in your prayers. She is a strong girl and amazes me how she takes all this with stride. She doesn't get nervous or freak out, and is already thinking about what special treats she wants to get while she is in the hospital.

I'll keep you posted if anything changes.

Thanks in advance for everything.

Thursday, August 13, 2009

It must have a Hot Temper

For lack of better terminology, Madilyn’s mass has “flared up” again suddenly. She is scheduled for an MRI on Sunday morning at 9:00 at Children’s Hospital in Atlanta. I know that seems like a weird time, but they said they do MRI’s seven days a week at the hospital, so I guess Sunday is as good a day as any.

About a week ago, she started complaining that her shoulder was hurting a little, and everyday since then the pain has gotten progressively worse and worse. She is now back to the point where it hurts to use her right arm at all, especially if she has to move her shoulder and she is wearing her sling full-time again trying to alleviate some of the pain. I called Dr. Fabregas, her orthopedic surgeon, and he suggested we go ahead with the MRI, and what he is calling “diagnostic testing”.

She has been doing fine up until this point. I have been checking the mass area frequently for any signs of change, hoping it would start to look like it was shrinking. To me, it looks like it has grown. It seems to go up the clavicle bone into her shoulder more than it did before. And now it looks like it is growing out more as well, protruding so much that it looks like it is moving up her neck. It appears as if it is swollen, but it is very sensitive to the touch, and she cries out in pain if I try to feel around on it, so I haven’t been able to see if it feels any different than it has been.

She ran a fever on Tuesday of last week for no apparent reason. I thought her body was just exhausted from a long week in Florida. So you can guarantee I will be asking if the fever could have anything to do with the mass suddenly flaring up again.

So, I guess we are starting the “Let’s wait and see” cycle again. More testing, more waiting, more questions, more unanswered questions, more frustrations, more anxiety.

I’ll update and keep you posted as soon as I know anything.

Prayers, again, are needed, and so appreciated!

Thanks for everything!

Saturday, August 8, 2009

Moving Slow

Sorry for the delay.

What can I say?

This is what I feel like these days.


No matter how hard I push myself, I just can't seem to move fast enough to escape reality.


I feel for you, big guy, really I do.

Maybe I should get a sign to warn people.


But hey, slow and steady wins the race, right?

WARNING: Following posts contain massive overload of Florida Vacay pictures. May be too much for you to handle if you suffer from a jealous heart. Please proceed with caution.

Barefoot Beach

Day One - Could life be any better than this?



I think not.

Beautiful scenery.

Happy Family.

Friends talking and laughing.

Feeling like we are alone on a deserted island, enjoying our own special place on Earth. This is what vacation is all about.













So wonderful.

Love Connection

Could it be that there is something between these two?


Okay, so maybe Jen and I just dream that someday there actually will be.


Who says arranged marriages have to be a thing of the past?

The Cutest One of All

It is no secret, no secret at all I tell you, that Jen and I have the cutest, most adorable, good looking bunch of kids ever (notice I said nothing about the most well-behaved!)

We are truly blessed with this group

But there is now one more super cutie. One of the highlights of the trip was FINALLY getting to meet little miss Kendra for the first time. And let me say, it was well worth the wait, and she did not disappoint.


Now there are those that say that all babies are cute. Well, these people have obviously never met a Brooks or a Langley baby, because, truly, there is no comparison.

Imagine the possibilities of cuteness if any of these kids hook-up some day to make babies of their own!

Siesta Key

Day Two - we ventured northward a bit to visit the infamous Siesta Key beach in Sarasota.


The beach was beautiful and we had yet another fabulous day.









Life is good.

Fun around Ft. Myers

Day Three - We decided to take a break from the sand and surf, and see what kind of fun we could have around the hot town of Ft. Myers.

Did you know they grow oranges in Florida? No, I mean, big oranges!



Good thing it rains every afternoon in Florida. Those oranges need plenty of water!

Next, we decided to take a sight-seeing train ride around town.






The town of Ft. Myers - looks like it could use a little facelift


Thank goodness for the Brooks' hospitality, because I'm not real sure I would have wanted to stay at this hotel.


Strange animals roam the area.


If you happen to be attacked by some animal, this is where you will buried


One good thing is Ft. Myers is going green, seeking alternative energy sources



And did you know that it is hot in Florida, too? I mean, really hot! Made me want to shed my clothes, shave my hair, and turn into a fish.

To cool ourselves, we hit up a sprinkler park. The kids had so much fun playing in the water.











Another great day.