Meet Aubrey

I was working on an entry about premature awareness month for November, but then something happened. Something bigger than me, bigger than my small "platform" on prematurity (it will be coming later this week). Little Aubrey. Aubrey is an angel on Earth and if the insurance companies wouldn't spin out into oblivion by looking at how costly it would be...I'd promise Matthew off to her. :) Look at this face and just try to deny how cute she is!

I had the great joy of meeting sweet Aubrey this spring at Egleston. I was dear friends with her father in high school, but like with most friends...with the passing of time and the building of our families...will lost track of each other. I never dreamed I would meet Jeremy once again on the transplant floor of all places. It was both wonderful and awful to see him. We caught up 8 years in the thirty minutes before Matthew's dialysis run. And Matthew and Aubrey waved to each other in their respective strollers. I know God brought Jeremy's beautiful family back into my life for a reason, though I wish it could have been the fact that our kids were on the same soccer team instead. I know the doctors, I know the nurses, I know transplants...maybe I could give them some knowledge...in anyway possible. However, I don't know pediatric cancers.
You see little Aubrey is a big fighter. Late last year she was diagnosed with a very rare tumor called a Rhabdoid tumor. Her poor body endured numerous months of chemo before she was finally given the sweetest gift - the gift of life from an angel with a signed donor card. This summer, Aubrey was finally declared cancer free with the help of a liver transplant and God's healing grace. I shared Aubrey's miracle with my friends and family and all rejoiced for her and with us!
Last week, Aubrey's parents noticed some sort of mass in her abdomen, and after calling the transplant team, thought it was likely to be a hernia. After transplant clinic a few days later, it was determined NOT to be a hernia. It is "something", believed to be the Rhabdoid returning. Tests, biopsies and surgeries will follow this week with an official diagnosis.
As most of my friends know, I rarely ask for prayers (especially for myself or my family), but I humbly ask you know to pray for this family.

This loving, Christian family that has already received one miracle desperately needs another one right now. Please pray that the tumors are benign or that the tumors are a less agressive type, an type that responds to medicine and chemo quickly. Please pray that God will keep this family enfolded in His strong arms. Pray that both Michelle and Jeremy find wisdom, hope and comfort in the days and years to come. Pray that older sister Maddie finds security and happiness as her family is once again torn between two places. And pray for complete healing for Aubrey...here in her earthly home.
God, I know You have this all mapped out already...but please allow us a selfish request to keep an angel on Earth with her family. Help her story and her fight unite people to better love and serve You as You perform yet another miracle through her. Please God, encourage others to give their time and money to various children's hospitals through out the country this holiday season in honor of Aubrey and her past battle, her current fight. A big request, for a small person. Lord, hear our prayer.

Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. (Prov 3.5-6)

Miracles

Miracles...I don't use that term loosely. Pretty much the only time I "regularly" say miracle is when referring to a certain Christmas movie with that word in the title. So, what is a miracle: 1. an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause. or 2. such an effect or event manifesting or considered as a work of God.
Earlier this summer, my husband's grandfather was diagnosed with a rare bile duct cancer, cholangiocarcinoma. He was given his "time frame" and told to enjoy his family. This cancer was often too hard to fight.
Last week he went to the doctor and had a scan. The previous scan he had had a little over month ago showed that the chemo was helping the tumors (he had many small tumors everywhere in his liver too) not grow, but they weren't shrinking either. This scan showed - NO tumors at all...even in his bile duct! Needless to say the doctors (and all of us too) were shocked and thrilled. Our family miracle was celebrated this weekend when the boys got to play with their great-grandfather). William always asked him if he was still sick every time he saw him, but this time grandaddy finally said "all better". :)
I can't wait to finally report Matthew is "all better". We are still waiting on our miracle, but have received SO many. It is so odd that yesterday I was talking to a friend about how all the surgeries/treatments that were supposed to help Matthew - ended up causing some sort of damage either short or long term. But all the surgeries/procedures that were likely to kill him - were the ones that saved his life.
Please God, as we come up to the one year anniversary of hemodialysis (another statistic that most babies do not live to see), I ask that You protect my son and keep the doctors wise. Keep our potential living donor (that finished her phone interview from Emory yesterday!) in Your embrace and protection. I really want to have a New Year's resolution of keeping my boy's gently used kidney healthy. I know things are at Your time, and I am waiting. Waiting both anxiously and patiently for a miracle.

Five for Friday with mama m

So, welcome back to Five Question Friday!! The fun little carnival to get to know one another and have a little bloggy fun!

Rules: Copy and paste the following questions to your blog, answer them, grab the MckLinky Blog Hop code, and link up! I would be ever so grateful if you'd link back to me...Mama M!

What's that?

You don't have a blog? Well...just answer the questions in the comments below!

Let's get started!

Questions for 11/13/09: (Thanks to Sandy for her question and to Liz for inspiration--I tweaked her question a bit!!)

1. What is your favorite "eat" on Thanksgiving?
I LOVE green bean casserole. We just don't have it any other time other than Thanksgiving or Christmas, so I stock up on it then.

2. What is the name your best girl friend and the best trait about her or how you met (or heck, both!!)
Audrey, (she's my sister). She introduced me to my husband...so she kind of rates high due to that. ;) Her only down fall...she's a Dawg fan, but no one's perfect (except Georgia Tech fans) :P

3. What would you say is one of your "weirdest" quirks?
Man - I EAT WEIRD! Weird things, weird ways - like a slice of cheese, bbq potato chips and sweet pickles all ON one sandwhich with mayo. ;) I eat candy outside to inside...taking off the sugar coating (like M&M's) or the chocolate covering of peanut cups and butterfingers. But that's not what I wanted to share. ;)
I twirl my hair - weird - not really. BUT I have some sort of oddity for "soft" things. I twirl my hair, when I'm bored, content or frustrated. But then I take my newly twirled lock and rub it underneath the "pucker" of my lower lip...and it feels like silk. I don't know...what can I say...I'm just weird. :)

4. What is your favorite genre of music? (Hip hop? Classical? Rock? etc.)
I will listen to everything but opera and rap. I am mainly a top 40's, southern rock kind of girl on the whole though. But the Georgia Tech defense has put another song that I normally wouldn't be singing in my mind lately "All the way Turnt up". It's their "pump up song" on big 3rd downs...and it's catchy.

5. Are you a Night Owl...or an Early Bird?
Both - not by choice. Mainly - I'm just tired.

I am thankful

I am thankful that Matthew's surgery allowed him to be in patient for 10 days so we could learn about some potentially dangerous complications due to his high blood pressure. I knew high blood pressure over the long term was bad, but no one expected it to get so bad so quickly. Matthew's heart is damaged, but not irreversibly. With new meds, (and a new kidney, minus TWO crappy kidneys) Matthew's heart will be repair itself and be just fine. But they will monitor it now. If things go from bad to worse, we get listed...no more waiting. Without being in-patient -they would not have caught the fluid in his heart, in his lungs and the thickening of his ventricles. But we caught it...we caught it...it will be ok. I am thankful!



I am thankful we got a larger catheter...which makes for a smoother dialysis. With smoother dialysis...you get less alarms. Alarms cause the machine to stop...when the machines stop, the blood isn't getting clean. Matthew's blood is the cleanest it has been for a while! The day of surgery - his creatinine was 7.8, now it is 2.7. :) This mommy is thankful AND happy! And so is Matthew. :)



I am thankful that Matthew smiles the brightest smile for me when I need it. I took the hospitalization a lot harder than he did! Everyday to be told "you'll go home tomorrow", only to be re-told "well, one more night". To be given discharge papers THREE times and only for one of those to actually hold true! VERY frustrating. But that smile...made it worth it. Bad food, no sleep, 5am labs and REALLY having to relieve your bladder right as the doctor, intern and resident ALL walk in to do each of their separate spills. I'm thankful Matthew is so happy...he makes me happy.



I am thankful William is strong and healthy. I am thankful that I don't take his health for granted anymore...I just realize how blessed I am to be a mom to a "normal" extraordinary kid. He still surprises me with his intelligence and sense of humor. His athletic abilities are gaining too. Hmmm - dare we say track star? This boy rocks my world everyday. I'm thankful to be his mother...and that he tells me he misses me when I'm gone (even if it ends up making me cry afterwards).



I am thankful for unexpected detours that lead to wonderful family memories. I am thankful I can't plan it all, but can enjoy every second. I'm thankful for my family that God game me. For a supportive husband that lets me cry on his shoulder or come home from the hospital so I can spend some time with our other son. I'm thankful for my parents that came up to the hospital EVERY evening so that I was able to get a "break" to take a shower, take a nap, take a breath. I'm thankful for my "family" friends that lifted us up in prayer and my special "big sis" Robin that even drove down to visit us. Yeah, my family is kind of...wonderful and for that...I'm thankful.

Extremes

Found a loop-hole in the Children's healthcare system and am able to do a quick post as Matthew just went down to bed...hopefully. Yes, we are still here, but more on that later (see his caringbridge site for full updates).
Being in patient, I was able to witness a beautiful moment today. The first steps into a new life. A liver patient received his life saving gift over three weeks ago. Since then his tiny 8 year old body has been wracked with pain...mind numbing, gut wrenching pain. The doctors finally listened and reopened him to find a MASSIVE infection growing right next to his new liver. If left in much longer, the liver would have not made it. He arrived up from PICU yesterday. This afternoon, he took his first steps down the hallway...steps into a longer, healthier life full of possibilities. Everyone came out of their rooms and even the nurses and techs stopped to watch and then clap. Teary eyes were abdundant! It was beautiful!
Today I found out my son was developing congestive heart failure. Something a mother doesn't want to hear about in the first place, let alone on a child that is 16 months old. When they placed his new catheter, they ordered a chest x-ray to make sure the lungs weren't nicked and they were in the right artery/vein in his heart. They found fluid in his lungs. The next day they ordered an ECHO and an ultrasound of his heart. They found more fluid and that his ventricles were enlarged and thickening. He has had dialysis every day this week so far and will continue to have it every day until he is well enough to go home. They are drawing off as much fluid as possible. He has lost 2.5 pounds of fluid in two days. Blood pressures have come down from dangerously high numbers like 180/122 to 138/74. It's working.
He's not well enough for a transplant...he's not even well enough for them to put tubes in his ears like they thought they would do while we were here. But he is happy. He is smiling. He is "talking". He is pointing out every balloon in the hallway and picture on the walls. Everyday they have given me "worse" news by lunch time, after their earlier diagnosis of "maybe you can go home today". No, as much as I don't like to admit it...Matthew is a very sick little boy right now. But he is getting help! They are doing all they can for him, ordering procedures, radiology and labs to figure out this little puzzle that is my son.
If you had talked to me this morning, after getting 2.5 hours of sleep, you would not have recognized me. I have extremes...highs and lows...always been that way. I do tend to cover things up with my dry sense of humor...but those that know me can see through that. I was hurting for my son this morning. Hurting for his future and how unclear it suddenly was becoming.
Then I saw David, the 8 year old, and he inspired me. Kids do the darndest things, but inspire is not usually a word associated with an 8 year old. Crazy, overwhelmed, frustrated...those I hear more frequently. But I see little David and how far he has come and I look at Matthew and see how far he has come. From the threat of termination to the treatment of a transplant waiting in the wings. He's a fighter. And no diagnosis is going to keep him down! He won't allow it. I won't allow it! No need to hang my head and cry (hello - we all know Atlanta is a little flood happy at the moment). So if he is refusing to throw in the towel and start all the "why me's?"...well, why should I? We are going to keep pushing through until he is well and receives his transplant. We are going to fight this new battle because I'm a mom of a soldier boy. We are going to laugh and say statistics be damned, because they have never meant anything to us before as Matthew has always been the exception. We are going to go from one extreme of poor health to another of optimal health...because that's all we can do.