Many good things...

My brother is a fully ordained elder in the United Methodist Church. We saw him ordained at the George R. Brown Convention Center this evening and I choked back tears, recalling the many good memories I have of him. I am so proud of my brother. Words don't begin to express....

And I scheduled Sophie's next round of appointments to check on her LCH's progress today (aka. Ouchie the Bump). We are only FOUR months post-diagnosis, though it feels like it's been SO much longer. Thank you all so much for your kindness and prayers along the way. They mean the world to us.

It's almost midnight, so I will write more tomorrow.

Goodnight friends,
J

Are There Horses in Heaven?

This song was sung by Terry Fator. We were enjoying a great night of ventriloquism and comedy on Saturday night at his show at the Mirage when the show came to a break. The MC picked up and introduced the band, then Terry came back out and told a story and sang a song about his little boy that came to his show. It moved Adam and me to tears!!! For a mother of a nine year old with HISTIO, horses are ALL she talks about!

You can hear it here: http://www.horsesinheaven.com/about.html

Here are the Lyrics:
Horses in Heaven by Terry Fator

Little Bobby playing with his six-year-old friend
Plastic horses gallop on imaginary wind
They play all day when Bobby asks
What he wants next year when he turns seven
With a sigh his friend replies
Are there horses in heaven?

Are there horses in heaven?
Can we ride them to the stars?
Will they take us up to Jesus and drop us off in His arms?
Will I know how to ride them?
Before I get to be seven I’ve just got to know
Are there horses in heaven?

After months and months of chemo
Bobby’s friend is getting weak
He spends less and less time here
Now he can hardly speak
Bobby asks him what he wants
Next month when he turns seven
A tight hold on his little horse he says
Are there horses in heaven?

Are there horses in heaven?
Can we ride them to the stars?
Will they take us up to Jesus and drop us off in His arms?
Will I know how to ride them?
Before I get to be seven will someone please tell me
Are there horses in heaven?

Bobby didn’t see his friend after that day came
His mama couldn’t find the words
Didn’t know how to explain
She finally told little Bobby
Your friend never reached seven
Bobby said, ‘I know mom, he told me.
Oh guess what?
There are horses in heaven!

There are horses in heaven!
We can ride them to the stars!
Because they took him up to Jesus
And dropped him off in His arms!
And he knew how to ride them!
He never got to see seven
But now he knows
There are horses in heaven!'
 

Have a good day friends,

J

What Happens In Vegas, doesn't always stay in Vegas!!!

Terry Fator: Live from Las Vegas  <-- We saw this comedian/ventriloquist while we were there. He was AWESOME! He gives a lot of $$$ back to St. Jude's and our Troops! Buy a CD! It's for a great cause!!!

I am so happy! The weekend in Vegas far exceeded my expectations!!!

Getting to Vegas was no easy task. I was buzzing around like a busy bee at work on Friday, trying hard to keep my focus before such an amazing trip. My boyfriend had told me he needed me to go and get something from the jewelry store on Friday when he left last weekend, so I kind of knew it was coming. I just didn't know when exactly. My friend Tonya and I went out for a celebratory lunch on Friday and toasted with our sodas to the fun that was about to commence after picking up the ring. I had to try it on to see if it would fit at the jeweler but I didn't keep it on long before putting it back in the box… lol... That afternoon I buzzed around the office some more, until 5 o'clock finally arrived, and I could cruise on over to the airport.

The suspense had been building for our trip for weeks, so I was extremely excited. And, with the events of the last few months, I really NEEDED a break. Seriously! I went straight from work to the airport, and upon arrival, my flight was delayed 20 minutes, then 30, then an hour. Then, we got on the plane to board and took off for Phoenix. It was an extremely rocky flight. A lot of turbulence on this flight! And I kept thinking, "Okay, God, we've come through so much, you can get a plane full of people to Vegas!" and besides, I had so much to look forward to, I was like, "C'mon l'il plane, you can DO this!!!"

We finally got to Phoenix at around 9:30 Phoenix time (11:30am central). Then we found out that the flight that would be taking us on the connection to Vegas would be delayed an additional few hours, but no one had any idea it would be FOUR MORE HOURS. So, it was about 12:45am Phoenix time before they arrived. Adam and I had been texting along the way, and when they got on the runway, he texted me and said, "We've landed" and I was able to wake up, shake myself off, and be somewhat presentable after lying around the airport for four hours. I most certainly looked exhausted and my cute outfit that I had meticulously planned that morning was wrinkled, my hair a mess, my shoes were killing me (remind me NEVER to wear heels on a flight half way across the country) and I had the ring in my purse!

I couldn't wait to see Adam, the love of my life, sitting on the plane waiting for me. My expectations diminished a bit when I couldn't even see him when I got on the flight. I looked and looked and I couldn't see him. My heart absolutely SUNK…. Then, 20 rows back, his brown hair and blue eyes popped up to reveal his amazing smile, as wide as his face and he welcomed me to the row with a great big hug! Then, we talked for a bit and I silently reached into my purse and grabbed the ring and handed it to him. He took it out, looked at it, smiled, and we talked a bit more and he put it back in my purse because the flight was getting ready to take off. And, we had the row to ourselves. It was awesome to be able to sit and snuggle and look at the lights of Vegas as we landed.  So, we were pushing back from the gate at about 1:15pm. Reminded, this is 3:15am central time! So, we were in our room at the Mirage by 3:30am (5:30am central time). It was frustrating, but we were so thankful to just be together at this point!



As I reached down to unpack my suitcase, Adam walked up behind me and said my name, and I turned around like, "huh?" There he was, on bended knee and he looked up at me and said, "Will you Marry Me? I want you to wear the ring this weekend and for the rest of our lives", I got down on my knees and hugged him tight and said "Yes, of course I will!" and we were both shaking at this point. Then, he reached down and took the ring out of the box and put it on my finger. I was so surprised, even though I had been expecting it sometime this weekend. I am totally overwhelmed with gratefulness to God for bringing Adam to my life. He has changed everything. After the heartache of the past, God has brought someone to my life that has changed everything for the better, and has caused my heart to expand in ways I never thought it would. I love you Adam!

All dressed up to go see Terry Fator at the Mirage!

Ready for a night out in my new Stella & Dot necklace!

We had an incredible weekend of great food, fun times and LOTS of walking. Even though it was cut short by the delays on Friday/Saturday, it was still so much fun and we had some terrific memories. We went to Madame Tussuad's Wax Museum, which was one of our favorite photo ops!

I can't wait to start my life with him. Having a long engagement will be good for everyone involved, but I realize that it will be challenging. I know we'll make it. Us and our little Brady Bunch Family...  I am 100% sure it won't be perfect, but it will be fun, it'll be exciting, and it'll be full of love and awesome memories.  

God is SO good!

Goodnight friends!!!

J





Video about Sophie's Journey...

Medical Message & Prayer

Medical Update:

Today I am trying to collect myself from the complete and total frustration of the events of the last few days. I am struggling to stay strong when all I want to do is cry. I know God can use this testimony to do great things, but I really don't like how my kids are having to endure biopsies, blood tests and screenings when all I want them to do is play ball, swim, jump and throw normal baby tantrums even! Tonight as I was putting Aiden in the bath tub, I had to say "No" about something, and you would have thought I ripped his arm off!! All I kept thinking of was when he couldn't cry, because he was intibated for so long, and when he throws a fit, I am actually SO THANKFUL... funny when you think about it, I guess...

Well here's the update on the kiddos...

Sophie:

So, we went to the oncologist to status with him yesterday regarding Sophie's treatment. We got GREAT news! She doesn't have to go back to see them for two months! And, her blood counts were normal also. She is so brave! A few tears, but once I assured her there wouldn't be another PET Scan, I could tell she was relieved. Wait 'til I tell her they just called me and told me that her blood work was NORMAL! What is NORMAL anyway? Ours sure has changed from what it used to be.

After the oncology visit, we saw the neurologist. He wondered why they didn't repeat her MRI to monitor her "bump" but also reassured me that they were the experts, but to ask them if we could do one after our next office visit in July. Then, the neurologist said more good news, taper off the headache med, and don't come see me for four months. Music to our ears!!!

Aiden:

Fear and trepidation surrounded the second half of the oncology office visit, though. Aiden has a resistant cradle cap and a swollen, red lymph node behind his left ear. The cradle cap won't go away no matter what I do. And, it was worth asking about. Not to mention, he's got a rash all over his body and had strep throat and seizures due to his Epilepsy last week. They said in the ER that epileptics will have more seizures if they are ill, and boy was he! 103 fever, seizures, rash, strep… It was rough on mom and I and he felt awful. The pediatrician suspected that it was a virus on Friday. But, Sophie's oncologist said to bring him on in they wanted to take an "informal" look. So, we did. Sophie's primary oncologist said he wasn't sure he would biopsy, but then called the other oncologist in, which told us everything we needed to know. He said, "I would biopsy", especially considering what Sophie's gone through. The pediatrician (Friday) said that she suspects that it's just "cradle cap" and the dermatologist today says that he has an ointment for it, but then also said that he didn't disagree with NOT doing a biopsy to be 100% sure. I told him to call the Oncology guys and talk to them and get a breakdown of what exactly they wanted him to do. He said that he couldn't biopsy it today anyway because we needed to get some numbing medication first to apply prior to the procedure. They should have called it out to us yesterday and then we would have had it and could of done it today, rather than taking MORE time off work to go into the office to have them tell us to come back on Thursday. And, even though I had called the dermatologist and told the office there to please be sure to call the oncologist first so that he could make sure to get an adequate sample according to their specifics, they hadn't even spoken yet. I stressed again the importance of it because it sounded like they had some real specifics of what needed to be done in this particular case when we saw the oncology team. Frustrating! The biopsy is scheduled for Thursday morning at 9:45am. Please pray!

Prayer:

This song came on when I was on the way home from lunch with a very dear friend of mine today.  Every time I hear it, it strikes a chord in so many ways.

What Faith Can Do by Kutless

Everybody falls sometimes
Gotta find the strength to rise
From the ashes
And make a new beginning

Anyone can feel the ache
You think it's more than you can take
But you're stronger
Stronger than you know

Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do

It doesn't matter what you've heard
Impossible is not a word
It's just a reason
For someone not to try

Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright

Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do

Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can

I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do

Even if you fall sometimes
You will have the strength to rise

AMEN!

I don't know if this link will work, but you can see the video and hear the song here:

http://www.youtube.com/watch?v=u1JBSQMkQEo

Good night and God bless!

J

For Aiden: Epilepsy Info, IVH Information, and a Preemie Prayer!

What is epilepsy?

Epilepsy is a neurological condition that from time to time produces brief disturbances in the normal electrical functions of the brain. Normal brain function is made possible by millions of tiny electrical charges passing between nerve cells in the brain and to all parts of the body. When someone has epilepsy, this normal pattern may be interrupted by intermittent bursts of electrical energy that are much more intense than usual. They may affect a person's consciousness, bodily movements or sensations for a short time.

These physical changes are called epileptic seizures. That is why epilepsy is sometimes called a seizure disorder. The unusual bursts of energy may occur in just one area of the brain (partial seizures), or may affect nerve cells throughout the brain (generalized seizures). Normal brain function cannot return until the electrical bursts subside. Conditions in the brain that produce these episodes may have been present since birth, or they may develop later in life due to injury, infections, structural abnormalities in the brain, exposure to toxic agents, or for reasons that are still not well understood. Many illnesses or severe injuries can affect the brain enough to produce a single seizure. When seizures continue to occur for unknown reasons or because of an underlying problem that cannot be corrected, the condition is known as epilepsy. Epilepsy affects people of all ages, all nations, and all races. Epilepsy can also occur in animals, including dogs, cats, rabbits, and mice.

What is the difference between seizures and epilepsy?

Seizures are a symptom of epilepsy. Epilepsy is the underlying tendency of the brain to produce sudden bursts of electrical energy that disrupt other brain functions. Having a single seizure does not necessarily mean a person has epilepsy. High fever, severe head injury, lack of oxygen -- a number of factors can affect the brain enough to cause a single seizure. Epilepsy, on the other hand, is an underlying condition (or permanent brain injury) that affects the delicate systems which govern how electrical energy behaves in the brain, making it susceptible to recurring seizures.

Which doctors treat epilepsy?

Neurologists, pediatric neurologists, pediatricians, neurosurgeons, internists and family physicians all provide treatment for epilepsy. Specialized care for people whose seizures are difficult to control is available in large medical centers, neurological clinics at university and other hospitals, and from neurological specialists in private practice.

Is epilepsy ever contagious?

No, epilepsy is never contagious. You cannot catch epilepsy from someone else and nobody can catch it from you.

What should I consider if there has been only a single seizure?

When a child or adult has never had a seizure before, the first seizure is usually followed by a careful medical evaluation to help the doctor decide whether to recommend treatment with seizure-preventing drugs, or to wait and see whether it occurs again. The most important factor in deciding whether to begin drug treatment for a single seizure is the probability of further seizures. Physicians use both diagnostic tests and careful evaluation of the seizure itself to determine how likely it is that the patient may have more seizures in the future. Age, family history, and possible causes of the seizure are among the factors that are considered. Non-medical issues, such as loss of driver's license or worries about impact on employment, may also enter into the decision. In many cases, the doctor will recommend waiting to see if another seizure occurs before beginning treatment.

What causes epilepsy?

In about seven out of ten people with epilepsy, no cause can be found. Among the rest, the cause may be any one of a number of things that can make a difference in the way the brain works. For example, head injuries or lack of oxygen during birth may damage the delicate electrical system in the brain. Other causes include brain tumors, genetic conditions (such as tuberous sclerosis), lead poisoning, problems in development of the brain before birth, and infections like meningitis or encephalitis. Epilepsy is often thought of as a condition of childhood, but it can develop at any time of life. About 30 percent of the 125,000 new cases every year begin in childhood, particularly in early childhood and around the time of adolescence. Another period of relatively high incidence is in people over the age of 65.

What should I do if I suspect a seizure disorder?

If you think you or a loved one might be having seizures, it is important to discuss with your physician what has been happening. Keep a record of how often the unusual episode occurs, the time of day it happens and what form it takes. Giving the doctor this information will help him or her determine if what you are describing might be a type of epilepsy. (http://www.epilepsyfoundation.org/)

IVH is described here: In infants (Wikipedia Article, that actually is quite good)

This type of hemorrhage is particularly common in infants, especially premature infants or those of very low birth weight.^[2] The cause of IVH in premature infants, unlike that in older infants, children or adults, is rarely due to trauma. Instead it is thought to result from changes in perfusion of the delicate cellular structures that are present in the growing brain, augmented by the immaturity of the cerebral circulatory system, which is especially vulnerable to hypoxic ischemic encephalopathy. The lack of blood flow results in cell death and subsequent breakdown of the blood vessel walls, leading to bleeding. While this bleeding can result in further injury, it is itself a marker for injury that has already occurred. Most intraventricular hemorrhages occur in the first 72 hours after birth.^[2] The risk is increased with use of extracorporeal membrane oxygenation in preterm infants.^[3]
The amount of bleeding varies. IVH is often described in four grades:

• Grade I - bleeding occurs just in the germinal matrix.
• Grade II - bleeding also occurs inside the ventricles.
• Grade III - ventricles are enlarged by the blood. (ßAiden’s Grade)
• Grade IV - there is bleeding into the brain tissues around the ventricles.

Grades I and II are most common, and often there are no further complications. Grades III and IV are the most serious and may result in long-term brain injury to the infant. After a grade III or IV IVH, blood clots may form which can block the flow of cerebrospinal fluid, leading to increased fluid in the brain (hydrocephalus).
There has been various therapies employed into preventing the high rates of morbidity and mortality, including diuretic therapy ^[4], repeated lumbar puncture ^[5], streptokinase therapy ^[6] and most recently combination a novel intervention DRIFT (drainage, irrigation and fibrinolytic therapy). DRIFT has been tested in an international randomised clinical trial, although it did not significantly lower the need for shunt surgery, severe cognitive disability at 2 years Bayley (MDI <55) was significantly reduced ^[7]. Repeated Lumbar punctures is used widely to reduce the effects in increased intracranial pressure and an alternative to ventriculo-shunt (VP) surgery that cannot be preformed incase of intraventricular haemorrhage. The relative risk of repeated lumbar puncture is close to 1.0 therefore it is not statistically when compared to conservative management and does raise the risk of subsequent CSF infection ^[8].

http://en.wikipedia.org/wiki/Intraventricular_hemorrhage for the full article.

A Premature Baby's Prayer

God bless the little child behind the plastic wall

For all he knows is the ringing of the bells and

the blurred images around him. He has been taken

from my womb without warning and I long to hold him

in my arms.

Lord, I ask in your name that my child be healed.

I am willing to accept your decision no matter what

it will be. I am willing to take on the responsibilities

for caring for this child. I am willing to give this

child love and understanding no matter the cost.

Please Lord help me to accept reality and what has

happened without explanation or warning. Help me

face the fact that this is not my fault and that

I was given a special task to complete here on Earth.

God give my child the strength to make it through another

second, minute, hour and day as each moment is

a blessing and a triumph from heaven.

God, may you give the strength and compassion

to the caregivers and nurses that take care of my child

May you keep my child protected and free from all injury

and pain.

Please take away the guilt and burden from my heart dear

Lord. It is heavy and I feel it is all my fault.

Take it away dear Lord. Sweet Jesus allow me the strength

and understanding I need to communicate with the Doctors

and Nurses.

As you see dear Lord, I am at your mercy for the life of

my child. Please leave him here on Earth and know that

I will provide all the love and understanding that

this child needs. I accept the challenge and will be

your humble servant dear Lord.

~Author unknown~

Good night friends,

J

Three Simple Reasons...

Well we spent all night in the ER with Aiden with Seizures, Panting and Roller Coaster Fever (100 – 103 degrees). He’s got a viral illness of some sort (they don’t suspect Meningitis, thank God). He’s home resting now, but just wanted to ask for your prayers that he gets better, and quickly. Every time he runs a high fever, or has a viral illness, his threshold for seizures is decreased and therefore the seizures commence. He had three seizures, and thankfully they all decreased in severity due to the meds on board, but it’s just a lot… Epilepsy sucks!

Sophie goes back to TXCCC on Monday for evaluation by the Oncologist for her monthly check-up. Thankfully, she is doing well right now.

Please don't misunderstand my blog/facebook posts about my family. It's by no means intended to be some sort of pity party on my part. I get up and plug away at work every day I can possibly go and work hard because I enjoy the company I have the priveledge to work for. I blog for three reasons (1) to update family and friends without re-living the sometimes painful experiences of mothering two kids with ongoing medical issues, (2) to let people know what we're going through so that maybe they can share our experiences and testimony of God's enduring love, and (3) as a personal outlet to get things off my chest. If you don't like what you read, or don't want to know, please, with all due respect, don't read. I am not looking for sympathy, but rather to help you grow in your walk, closer to us as friends or inspire you to do something great for someone else. I hear Histiocytosis Research needs some "great" helpers (http://www.txccc.org/content.cfm?content_id=928). Just sayin'....

Also, unfortunately, I know that some of you are hopeful that my children will be fully healed. Though I think this is a very real possibility, the doctors have told us that Histiocytosis (Sophie) and Epilepsy (Aiden), in the forms that they suffer from, are very unlikely to just go away. Sophie may go into remission, but we will always be wondering if it will come back, and she will have to live with Histiocytosis for the rest of her life. It's the reality of it. Additionally, Aiden's epilepsy will likely be a life long struggle for him. It's unfortunate, but I've come to grips with this reality. This is our "new normal". I'm not saying I like it, but I also know it's best to be somewhat of a realist so you're prepared for the worst, yet expecting the best. I am VERY hopeful, but also realistic.

We are so humbled by grateful for those of you who love on us, pray for us and think about us. It's your prayers and kind thoughts that keep us going.

Also know, that though the weight of what we're going through is heavy, I don't discount that everyone is going through something, and by no means think our issues are more important than any one else's. God will see us all through our struggles, even if the outcome isn't always what we'd hoped for. Every day I wake up, get dressed and look in the mirror and know that the heart of the person staring back at me isn't the same as the person I was a few years back, and for that I am truly thankful to God. I know He has prepared me and strengthened me to adequately parent these little angels and be right where I am today, even if that means another trip to the ER or TXCCC.

Dear God,

Help me to hear your word, and to continue to see you working in my life every day. Because I know:

“For with God nothing will be impossible.” (Luke 1:37)

But He said, “The things which are impossible with men are possible with God.” (Luke 18:27)

“Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us.” (Ephesians 3:20)

Amen,

Have a good day, friends,

J

Our story

This is our story.

Sophie (picture attached) is 9 now. She's the only daughter to me, a single mom, and we have a very close relationship. She IS my heart, and I never expected to have to deal with a diagnosis like this. No mom ever does, I don't think. She was born a little bit early, but other than that has had a pretty normal and healthy life. Until last fall.

She had a weird bump come up on her scalp that we saw a dermatologist for back before thanksgiving. It would NOT go away and was growing quickly. Amid our frustration, we were told it was everything from a swollen gland due to dandruff to a Lipoma and ultimately, we were sent to a head and neck surgeon after the dermatologist attempted to biopsy it and noticed some abnormality in its content. He also said that it couldn't completely be removed in his office because it was SO deep... Early the next week she was seen by a head and neck surgeon and the surgery was scheduled.

We woke up very early (this was January, 28 2011) and went to the surgery center. Sophie was in good spirits and was put under general anesthesia for the surgery. An hour went by… the doctor said it shouldn't take more than an hour… and then an hour and a half… and the surgeon came out with her arms folded and a teary-eyed look on her face. She said that there was a tumor deep below the surface and that there was a weird "film" underlying the tumor. She said that she did two biopsies and that she sent them both off for pathology. She said that Sophie did really well and was in recovery. She also said that she'd never seen anything like this in the 20+ years of her practice.

The following week, Sophie was ill. She felt really tired and run down and we spent the Saturday after surgery at Memorial Hermann ER because she was having an allergic reaction to one of the medicines they had given her in recovery. Then, they gave her steroids and IV antibiotic and she did terrific. Her energy level went back up, so we were sent home that evening. They sent her home and Sunday she was a little better, but took a VERY long nap that afternoon. She felt terrible… So, Monday morning, I called the head and neck surgeon and we went back in to see her. She explained that this was Histiocytosis – X and it was distinctly positive on biopsy. It had eaten through the skull. She referred us to Texas Children's Cancer Center, so we got scheduled. She said that she had already notified the pediatrician and they were on the same page. When we went home the next day, Sophie continued to have symptoms, so I took her over to TCH where they did a skeletal survey to look for more lesions and told us to keep our appointment for later that week. The doctors in the ER had at least heard of Histio, but they didn't know how to treat it without calling the experts. They were very compassionate and kept Sophie comfortable but we were there ALL day. I will never forget how hot and flushed she looked…

Sophie got in to see the fine doctors at Texas Children's who are leaders in this disease. They first recommended chemotherapy and steroids for a minimum of one year. They did many scans on her, and to our surprise, there was no increase in disease in her system and the tumor that remains in her skull (the surgeon had only partially biopsied it back in January) has not continued to grow. They surprised us at her second clinic appointment by saying, still no chemo was needed. I can't tell you the relief we felt! Sophie is a best case scenario for the time being. She is being followed monthly on a "watchful waiting" program by her oncologist. We will have to go to TCH once a month for the next year, and our visits will take 1-3 days depending on the CT's, MRI's, lab work and PETScans he wants to order. Poor thing feels like a pin cushion... I pray to God every day with Sophie that the Histiocytosis (hers is the LCH variety) would just go away somehow.

So the last several months have been pretty much surprising to us in a million different ways. It's a total roller coaster of uncertainty. I wake up every day saying, Okay… What's NEXT? What does today hold? And, although we have had to adjust to a "new normal", we do realize it could be MUCH worse. I hate having to miss work, I do like my job and my coworkers have been amazing. I am desperate to find a cure, but powerless to do so. I am financially strapped because the other item that I should mention, is that I have a little boy whose been sick his entire life, and is only now starting to feel better and see some "healthy" in his life. He was born at 30 weeks and has Epilepsy, Cerebral Palsy, Kidney, Blood Pressure issues as well as Hypergammaglobulenemia of Prematurity (Immune Disorder). I am thankful that, for the most part, he's healthy, but I have often asked myself  "Why HER?", and "Why THEM?", and "Why US". They're just such amazing little kiddos. Both tenderhearted, kind, innocent and sweet.

Please do what you can to help Histiocytosis research! With a cure, and better information distributed to doctors, the better off these kids and adults will be. Why support Histiocytosis over other diseases? Because right now there is NO government funding for this disease. And though most often, it's treated in Cancer/Hematology Clinics but it's not called "Cancer" because it's a hybrid disorder that is half immune disease/half cancer. And, medical students don't study Histiocytic disorders much at all because it only affects approximately 1/250,000 kids and 1/650,000 adults annually. It's called an "orphan disease" because there is so little known about it. And, families of patients can't get the help they need if they fall above the poverty line because they make "too much money" for government help, but their child doesn't have "Cancer" so they can't get private assistance either. It's a frustrating roller coaster ride and we really need people like you to step up and help.

Please do what you can to help!

 I wrote this article for a friend of mine that is showing it to a member of our government next week. Please pray that it goes well.

God bless!

J

Help for Histio

Well today was one of those days. I felt terrible, but pushed through the pain. I was so grateful for my mom, who had dinner fixed for the kids when I got home around 6 o'clock, and let me eat and even helped us get started with baths and stuff. What an awesome mom I have!!! I am so blessed! I felt terrible today. The soreness they warned me about because of the amount of stuff they took out during the exam yesterday was more than evident today. I am prayerful and hopeful that I will be back to normal tomorrow. I am settling in from the day with a nice glass of wine after folding a couple of loads of laundry.

After getting an email from a Histio dad today, I got to thinking... What is stopping us from really getting help for Sophie's disease? Nothing! I want to share with you some additional information I found about Histiocytosis and the research that the doctors at Texas Children's are doing. Won't you support this? If I can save one baby's life. Just one. It will be worthwhile. I am pledging my support, whatever I can do to help the cause. I don't know what that looks like yet, but stay tuned, I will certainly be helping however I can. Kids with LCH and HLH and the related Histio disorders usually have a pretty high mortality rate if diagnosed before the age of two. There are a handfull of doctors in our country that are trying to change that. And, they already are. By working late into the night, staring at slides under a microscope day after day and performing research on how these cells act, they are changing things. One slide at a time.

This is why the "small stuff" doesn't bother me any more. I don't get my feathers ruffled too much, because I know that lives are at stake every day in our world, and by doing what I can to raise awareness, I just might be able to save one. I never thought that "one" might be one of my children, but it very well could be after receiving this live altering diagnosis. Please feel free to COMMENT if you or anyone you know has been affected with a rare disease like Histiocytosis. Please don't be shy... and know that your story matters to me too!

http://www.histio.org/atf/cf/%7B28840284-40A5-43E3-B0FF-82F1D54C440D%7D/atypical%20cellular%20disorders%20(mcclain).pdf

This article was written last night... I forgot to press "submit". Hope y'all had a great day!

Goodnight friends,
J

The verdict from today.... and my some of my favorite pics

Hey y'all! I made it through the Colonoscopy and EGD. The prep, though terrible, is not the end of the world. And, I actually encourage this sort of test if you need it. Guys, listen up, because Colon Cancer is one of the deadliest cancers out there, and early detection is key! The good news is that the doctor came out and talked to me after the test and told me he thinks I'm fine, and he doesn't think it's cancer - yay!!! There were a few areas of concern that we talked about and a few polyps that he biopsied. He doesn't think they are the cancerous kind and thinks I'm really probably going to do well after the cleaning out I had today. I know it's gross to talk about and may be way TMI for people, but if I can do this, so can YOU!

The only thing about today that I didn't anticipate was the nausea and the fatigue that I would experience after having general anesthesia. It was a long day, but I lived through it. Though I'm frustrated that I don't have an action plan attached to the report, I do know that there were some things going on that could be causing me issues, and that the doctor said sometimes when we go clean things out, people really do a lot better. I pray he's right.

We've got a very long road ahead with Aiden's and Sophie's issues. But, I am looking at the future hopefully because I know great things are looming ahead on the horizon along with the challenges that it holds. I know that everyone gets sick every now and then, and with their issues, we will just have to keep better records and keep up with things more, but we WILL make it through this.

After a VERY long day, and sleepless night, I am heading to bed. I just wanted to make sure I touched base and let y'all know that I'm okay. I didn't like the prep one bit, but the test itsself was no biggie, and can be critical in helping people find out what's going on if they have GI problems. So, fear not dear friends!

Just for fun, here are a few of my favorite shots from the last couple of months...

Dear God, Help us find out what is going on with the GI problems I have been having and take the pain away so I can be a happy healthy working mommy and support my two great kids and live the life you have gifted me with. I know you will watch over us and walk beside us on this journey and we are grateful for each day we are able to see! We love you, Lord! Amen.

Goodnight friends,

J

Vote, OBL and Crowns!

Please click on the following and VOTE FOR US! This is a contest that is being held by a local photographer (and dear friend), Melissa Brewer, who donated her time to come and photograph Sophie's birthday party when she found out that Sophie has Histiocytosis. We could win a family photo, but more importantly, other people will read your comments and hear about how amazing she was to donate her time!!! Please vote, ours is about 2/3 down on the right (#84)! You have to "like" snapped with love photography's page and then go to http://www.facebook.com/media/set/?set=a.101501658439432727.298301.89366308726

So you may be asking yourself, why is she up at MIDNIGHT on a Tuesday? Well, I'm having the GI tests run tomorrow and I can't sleep... So, there you have it! Say a little prayer for me, and please know that I will be unreachable for most of the day. I am praying for a result that has a plan attached to it. I'm sick of being in constant abdominal pain and sick of having crazy symptoms!

Tonight, I wwant to share with you some fun pictures of Aiden's birthday party today. I was turning six shades of green, but my mom still wanted me in the picture, so here you go...

My favorite song lately is Glorious Day by Casting Crowns. Only one man's death changed my life. It wasn't OBL!

Glorious Day (living He Loved Me) lyrics
One day when Heaven was filled with His praises
One day when sin was as black as could be
Jesus came forth to be born of a virgin
Dwelt among men, my example is He
Word became flesh and the light shined among us
His glory revealed

Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day

One day they led Him up Calvary’s mountain
One day they nailed Him to die on a tree
Suffering anguish, despised and rejected
Bearing our sins, my Redeemer is He
Hands that healed nations, stretched out on a tree
And took the nails for me

Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day

One day the grave could conceal Him no longer
One day the stone rolled away from the door
Then He arose, over death He had conquered
Now is ascended, my Lord evermore
Death could not hold Him, the grave could not keep Him
From rising again

Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day

One day the trumpet will sound for His coming
One day the skies with His glories will shine
Wonderful day, my Beloved One bringing
My Savior Jesus is mine

Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day



Goodnight friends,
J