Another round down!

Whew!! We got through another dose of the dreaded chemotherapy drug, Temodar...but it wasn't without many tears and sick nights. In finding out the tumor wasn't growing (AMEN!!!!!!), Claudia will continue with her chemo treatment. I never thought I would be praying and hoping for this awful chemo (as opposed to radiation)...and this past weekend, I'm reminded why.

Many have asked, so let me explain her chemotherapy treatment"schedule." Claudia is on 3 different chemotherapy drugs. Two of them are given together and have to be given through an IV in the hospital (Vincristine & Carboplatin...not sure of these spellings) and the third, we give to her orally at home (Temodar). The chemo is given to her in 10 week cycles. Total, there are 7 rounds of these 10 week cycles. The first two drugs are given to her at the beginning of the 10 weeks on Thursdays in Indianapolis, and the last (the oral) is given to her one week straight, at the end of the 10 weeks...and then we start all over again. Each of the drugs has their own list of side effects. The first two seem to have have minor short term side effects. The anti-nausea drugs seem to be working well..at least we think. I wish she could communicate a little better! This is one of the hard parts of dealing with a sick one so little. These two drugs effect her white cell count (immune system) pretty intensely, so we really have to be careful with her during this time. Another side effect from these two...she has no reflexes in her legs and her Achilles tendons are not working properly (affects her walking). These should go back to normal after her chemo is finished. As far as the long term effects (like kidney damage, heart problems, infertility, etc.)...we won't know until later. We're praying so hard against any of these.

The third drug, Temodar is the oral one we just finished up and it makes her very sick. Dr. recommended, we give it to her right before she goes to bed because it makes her very nauseous soon after she takes it, so by doing it this way, it helps that the majority of the bad nausea happens in her sleep...sometimes. This past Thurs. night was the first night (of round 4)and getting it down her is the first challenge. Because she can't swallow the capsule, we have to open it and give it to her with applesauce (why applesauce? I have no clue). And because it is chemo and very toxic, we have to wear gloves and mask, and throw away ANYTHING that comes in contact with it, etc...very scary - and I'm giving this to my daughter???? Getting it down her is pure torture. It obviously has a very bitter taste because she literally gags every time...and she fights..MAJOR!!! So, we have to sit on her, plug her nose, compress her tongue (so she can't spit)...you get the picture. It's awful. Finally, after getting it down her and exhausted from crying, she always goes up and lays with Christian until I finish up things for the night and get ready for bed and then I rock her and put her down. Well, Thurs. night after giving her the chemo, I'm downstairs and I hear, "SAAARRRAAAHHH...HELP!!!" I knew immediately what had happened. Claudia had vomited EVERYWHERE...in OUR BED! Long story short, that was only "round 1" of about 10. Soon after getting her into the bathtub, she threw up again. And as soon as we got her out of the tub and dressed, she threw up again. As soon as we got her changed and more clean clothes on, she threw up again...and again...etc. After a full night of this, by morning, she had nothing else to throw up and was just dry-heaving. She finally fell asleep by 8:30 in the morning. I hope I'm not being too graphic, but this is little Claudia's life. It just breaks my heart to watch her go through this. These are the nights I cry out to God with "WHY???? HOW MUCH MORE CAN WE TAKE?" The following nights with this chemo weren't AS bad. (PTL!) This drug not only makes her very sick, but it really wipes out her body internally as well. It makes her white cell count drop pretty low, but it really effects her red cell count and platelets. In fact, she's had to have a blood transfusion (platelets) because of this drug. So, we'll pray it doesn't have that effect this time. EVERY Wednesday, we have a nurse come to our house to draw blood and check her counts.

She's doing much better today and we're very thankful for that! Just wanted to give you a brief update on how everything's going here. We have a 2 week break before we start the next round of chemo in Indy. Well, they call it a "break", but its actually when her body is trying to re-coop from all this chemo and is usually pretty shot...meaning bad counts, so we really have to be careful with her during this "break" period.

Thanks for your prayers. They're so precious to us. We love you all!

Sensing God's Hand

(Waiting in hospital to be taken for MRI)





Wow! Where do I begin?!?! Sorry it has taken so long to update you on the events of the past few days. I didn't realize how exhausted and sleep deprived we were until about 10 o'clock last night as I was trying to write this and we all came crashing down from this emotional roller coaster ride, actually "all" referring to Christian and I...Of course, Claudia was wound up ready to play until 4:00 am last night- yes, that's 4:00 in the morning. After her surgery 1 1/2 yrs. ago, Claudia has decided that nights aren't for sleeping anymore. She sleeps a different schedule, literally, every night. I've tried EVERYTHING. I've tried everything from letting her cry (hours!) to putting her on a strict schedule. Nothing works. And to complicate matters, its hard to know if she's crying/fussy because she doesn't feel good (which is VERY possible...talking to patients who are taking her type of chemo say its awful) or if she's just being 2! Needless to say, this sleeping thing is getting pretty old and we always feel tired, and yet I can honestly say that its the least of our worries!

OK, I promised details...lots of detail, so....

Let's begin with Monday - The very powerful day of prayer and fasting. It was from 8 to 5 at our church sanctuary(and in people's homes!). Have you ever felt God's presence so intense that the air almost felt thick? Maybe that sounds weird, but I've never felt God's presence more that that day. A group of amazing, godly men and woman prayed with me, pleading God's promises over our family/this situation and of course, for God to heal my precious baby...HIS baby. It was so much bigger than just a day of prayer for Claudia. People poured in...many I've never even met...most not even attending our church -- all down on their knees, praying. Our phone rang off the hook, the e-mails poured in, all people telling us they were praying. I later learned that word of this day had spread and churches of people across the country were also on their knees praying...from New York City to St. Louis, Missouri (my aunt's church) all the way to Kenya and the CAR, Africa. It was absolutely the most beautiful picture I have ever witnessed of the Body of Christ picking up "wounded" family members and literally carrying them to the cross. There's just no words to describe the gratitude that overflows from my heart. I am so humbled. To all who joined us in prayer that day, thank you. The tears fall from my face because I just can't even find the words to express my love and gratitude for you. So many of you tell me this is "just what the family of God is called to do"...well, I've asked God for special blessings upon each of you...even though I know Heaven will be full of those rewards!!!!! I will tell you in later posts of how God specifically worked in many different ways and lives that day. (A special thank you to Pat Gano for orchestrating the events of this day...I love you)

As we left for Indianapolis that night (we always stay the night at the "hospital hotel" the night before an MRI because Claudia can't have anything to eat or drink before the procedure (they put littles ones her age to sleep for MRI's) and a 2 1/2 hour drive with her begging for a drink is torture..in more ways than one...we only made that mistake once!) I had such a peace that the outcome was in God's hands. And even though my mind reassured me of this peace, my body was overcome with the effects of anxiety including nausea, insomnia, and um...let's just say stomach problems, etc. After anticipating this day for so long, here we were, actually on our way. Needless to say, the drive that night was particularly long...for everyone. Just a sidenote, for those of you that don't know Claudia, she HATES car trips. Minutes after we get her strapped in, she sounds like a broken record crying, "out, out, out, out..." which then quickly turns into full blown crying and tantrums. (I thought car rides were supposed to be "soothing" and make kids fall asleep...oh yeah, I forgot, this is CLAUDIA...nothing is normal!!!) Along with some other behavior we've noticed, we think she is claustrophobic, so being strapped down just doesn't go well. For obvious reasons, this makes our weekly chemo trips to Indy even more stressful! (Thank goodness for mini DVD players...what did they do before them?!?!) Anyway, because we left so late, we didn't get in to the hotel until 12 that night and wouldn't you know Claudia was ready to set the place on fire!!! My parents also drove up to be with us, so after keeping them up for a little while we roamed the hotel hallways. She loves pushing her babydoll in her mini stroller so we walked the halls for the next few hours trying to wear her out. (Aren't you glad you weren't in the hotel with us that night?!?!) And do you think that worked? Nope!!! I know it sounds crazy, but I actually was thankful for the extra time to pray and for something to keep my mind busy...If I hadn't been chasing Claudia, I would probably be laying awake in bed.

Finally, the long awaited, dreaded day came. Unfortunately, Claudia woke up especially "grouchy." As we all know hospitals and dr's offices, we waited 2 hrs. before they actually wheeled her down for the MRI at 12 noon. Thankfully, St. Vincent Hospital is especially "kid friendly" and have many volunteers to help make these kids' experience a little less traumatic. So while we waited, we played with bubbles, took wagon rides, walked the halls and most importantly played with the dogs!!! Yes, you read that correctly! We were fortunate enough to be there when the hospital therapy dogs were paying a visit to pre-op. The fact that her appt. fell during the time these dogs were there is a total "God thing." Again, if you don't know Claudia, she LOVES dogs. When the volunteer walked in with a little white dog and laid it on her bed, I thought Claudia was going to wake the dead with her screams...she was sooo happy! The picture above is not very clear because it was taken with Christian's cell phone, but its the only picture of our day, and those dogs were a vital part in helping us get through it!!! These "waiting" times are absolutely the hardest thing. Waiting in the lobbies of hospitals with a child that has a deficient immune system is absolutely nerve racking. I've become so sensative to germs that I think I could hear someone coughing at least 2 rooms away!!! And try telling a 2 yr. old they can't touch ANYTHING...especially the toys in the dr's office that every sick kid has played with. And even harder, are the "waiting for results " times. The unknowns are so difficult. Waiting...and waiting some more. A verse the Lord has given me and written on my heart that always comes to mind during these times is Psalm 27:13 "Wait for the Lord, be strong and take heart and wait for the Lord."

Because her port-a-cath didn't have a needle/IV in it this time, they had to put her to sleep with a gas mask...she HATES this. It always tears my heart out when we all have to hold her down until she breaths enough of the gas to put her out...all the while, she's grabbing for me yelling "mama, mama." Once she's asleep, they always let us kiss her good-bye. I can't even write this without crying. I thought after 11 MRI's it would get easier. It doesn't. As I walked down the hall to the waiting room, I could barely see where I was going because of the tears. Its in these moments that I'm reminded how much all of this is out of my control. I'm her mother, I'm supposed to protect her...but I'm completely helpless. It helps to know that when I hand her over to the dr's, God never leaves her. His gentle hands are holding her tighter than mine are even able. What a gentle, comforting God we serve.

The procedure took about 1 1/2 hours. They give us a beeper to go off when they're ready for us and we can go see her. When it goes off, I must look like I'm running a 50 yard dash for an Olympic gold medal as quick as I get to that nurse! Claudia doesn't like anesthesia too well. (Who does?!?) It always seems to take her a day or two to snap out of it. And although she cried quite a bit this time, she actually took it very well and by the time we left recovery and got to the cancer clinic to get the results, she was walking around ready to play! What a huge answer to prayer! Like I said earlier, waiting for the results is absolute TORTURE! The tension in our room while waiting was thick enough you could have cut it with a knife. We've had enough MRI's to know about how long it takes to get the results and so when it was taking especially long, everyone knew this wasn't a good sign. If the tumor was growing, our Dr. would call the radiologist to talk about results and future treatment before talking to us, thus taking much longer. Even our nurse seemed to be extra sensitive to what, we thought, was happening. And then, as I was walking an impatient Claudia, I saw our dr. coming down the hall. She had a funny look on her face. My heart dropped, my stomach was in my throat... all of a sudden, I couldn't move! I'll never forget her words, "Well don't you want to know the results?" (DUH...if you can't tell, I'm holding my breath and if you wait any longer I think I'm gonna pass out!!!!!) "The tumor's not growing. It never did grow, Sarah!" Of course, I ask, "Are you sure?" She says, "yep, I'm sure!" After jumping around and suffocating her with a hug, I ran (yes, ran) to the room to tell everyone! Everyone's eyes instantly filled with tears. PRAISE GOD!! HE ANSWERED OUR PRAYERS!!!

So, the question remains...what happened? The answer, we don't know. Either the tumor has shrunk or the last MRI was inaccurate. The doctors aren't sure. The reason it took so long for us to get the results this time was because the best radiologist in the area was there and wanted to go over every single MRI to compare results. He stands firmly to his professional opinion that the tumor has never grown since the original MRI. Now, my theory...the last MRI's results were no mistake. Whether it grew or not, I don't know, but I do know it was all part of God's sovereign plan to bring His people to thier knees in prayer. That many people, in communion with God was for a purpose...definately not a mistake!

After celebrating with lunch with my parents, its as though God "put the icing on the cake" and Claudia slept the entire way home! (The second best part of the day!!!!)

As I'm sitting here reflecting upon all that has happened these past few days and weeks, I can't help but feel overwhelmed with how we have seen God work and how much we have sensed His hand! And although we have crossed one huge milestone, the journey still remains. We will continue with chemo every Thurs., which is scheduled to last until November. (Which by the way, we are exactly half way done!!!) And we will continue to pray for complete healing...that this tumor would disappear. What we have learned through all of this so far, is life changing. Our lives will never be the same. And although the pain of this journey is sometimes paralyzing, the lessons God has taught me and the person I am becoming because of it, is something that can't be mistaken. GOD IS FAITHFUL. GOD IS GOOD...ALL THE TIME. HE IS ABLE. HE IS BIG ENOUGH. The amount of people that have been impacted and the hearts changed...its all part of the bigger picture. I have numerous stories to tell of how God is working in different people's lives...all because of "Claudia's Journey." Thank you for coming along side us...you mean so much to us.

Jumping for Joy!!!!

In case you can't tell from this post's title and the pictures above, we got some awesome news today...we are definitley "jumping (and singing and screaming and dancing and...) for joy"...CLAUDIA’S TUMOR IS NOT GROWING!!!!! Praise the Lord!! God has answered our many, many prayers!

We are on our way to my parent’s house for a little party so I will give more detail about the events of today and yesterday's very powerful Day of Prayer (lots & lots of detail!! ) as soon as we get home, but I just wanted to get this out ASAP for all the many people praying and anxiously awaiting today’s results.

A quick recap: The last MRI (February 2) showed that Claudia’s tumor had grown 2mm. Because this is such a small amount, dr’s wanted to start another round of chemo, then recheck it in 6 weeks to, in their words, “confirm” its growth and basically see how fast it was growing. And if it was, in fact, growing we would have to begin radiation immediately…our worst and last option that would lead to many horrible side effects (again, I will give all these details a little later). BUT, GOD ANSWERED OUR PRAYERS!!!!!! The MRI tests showed that the tumor did not grow at all...in fact, it is the same size it has always been. I guess this means that the last MRI /test was either a "mess-up" or the tumor has shrunk...I'll tell you later what I think it was!!!!!! All this to say, WE DON'T REALLY CARE...ALL WE KNOW IS THAT ITS NOT GROWING!!!!!!

I can't wait to fill you in on all the details a little later, but for now, we have some PARTYING TO DO!!!!!!!

Day of Prayer & Fasting for Claudia

Our church has set up a Day of Prayer and Fasting for Claudia, the day before her MRI (which will determine if the tumor is growing). Here are the details taken from our church website:

Come to a Day of Fasting and Prayer for Claudia McCray
What? Day of Fasting and Prayer
Where? Community Grace Brethren Church Sanctuary
When? Monday, March 20th–8:00-5:00

Claudia is a 2 year old with a brain tumor. She is having an MRI done on Tuesday the 21st of March. If her condition hasn’t improved, then radiation will need to be done immediately. The radiation will cause serious side effects to her skull, causing possible brain damage affecting her development and growth.

Community Grace is having a day of fasting and prayer for Claudia on Monday the 20th. Please join us anytime from 8:00-5:00 in the church sanctuary.

Even if you are unable to come to the church, please consider fasting and praying for Claudia. Her appointment is between 7:00 and 10:00 on Tuesday morning.

909 South Buffalo Street Warsaw, IN 46580 574.269.2443Office@CommunityGrace.org

Claudia's Story

For those of you that don't know Claudia's Story, here it is...from the beginning.

On September 3, 2004 our lives changed forever. Our 10 month old daughter, Claudia was diagnosed with a brain tumor. Through the advice of many specialists across the country, a team of pediatric surgeons performed a craniotomy and removed the tumor on the day she turned 11 months old. This procedure involved cutting her head from ear to ear and removing a piece of skull from her forehead to get to the tumor. This very intricate surgery, that was scheduled to last four hours lasted nine and didn't go as we had hoped. It revealed that the tumor was much more invasive than originally thought. The tumor had invaded the entire optic nerve, sinus area and even the carotid artery. In removing this artery to her brain, she lost over half of her blood and almost died on the operating table that day. But God decided He wasn't finished with her little life yet. The following month of recovery in the PICU also presented numerous challenges and setbacks including a full day of unexplainable seizures, heart and breathing problems, continued blood loss that required additional transfusions, etc. Yet, with each heart breaking obstacle that satan threw in our paths, God always seemed to fire back with a miracle! Because of the removed artery, doctors told us she would almost positively have a stroke - resulting in the paralysis of half of her body...she never had a single stroke! Doctors also told us she would never open her eye (which is blind) without future surgeries...today it is nearly 2/3's open!
Unfortunately, the story does not end here. We found out in April '05 (follow-up MRI) that the tumor had grown back. Unfortunately, it is growing back in the center of her brain in an area that is inoperable. We were devastated. After sending a piece of the tumor to Johns Hopkins for further evaluation and a month of many doctors/specialists across the country discussing the best course of treatment, on June 2nd, Claudia had a port-a-cath surgically inserted into her chest and began an aggressive chemotherapy treatment plan. Normally, radiation is used on this type of tumor (desmoplastic infantile astrocytoma), but because she is so young, the effects of radiation would be too harsh on her immature and still growing body, so chemo is being used to try and stop the growth of the tumor until she is older and her body is more developed to take this strenuous treatment. The chemo will last 1 ½ years and entails us driving to Indianapolis (St. Vincent Hospital – a 5 hr. round trip drive) every Thursday. Depsite all the horrible side effects of chemo, Claudia is actually taking the chemo very well...much better than doctors had expected.
However, again, an MRI showed in February '06 that the tumor may, in fact, be growing again. This would mean the chemotherapy is not working and leave us with no other option than radiation...the worst and last option. Radiation could have devastating long term, side effects on her brain, skull and pituitary gland. An MRI on March 21st will show whether it is truly growing. Until then, we undergo another round of chemo and are intensely praying this is not the case.

(AVAILABLE FORYOU:We put together a CD - after the surgery, before finding out the tumor had grown back - explaining many of the emotions we felt and specifically telling of how God sustained us through that painful leg of the journey. ALSO...Silveus Insurance Group, Inc. (local insurance agency) so graciously have donated/made available green bracelets (like the Lance Armstong "LIVESTRONG" ones) that say "Praying for Claudia" If you would like one of these CD's and/or bracelets, we would love to send it to you...e-mail your mailing information to sarahekessler@yahoo.com)

Figuring out this "blog" thing!

McCray Family

Celebrating Claudia's 2nd Birthday

(Many have asked for a family photo...I thought I would put a "fun" one!)

Hey Everyone! Thanks for joining us. This is our very first post, so be patient with us as we figure this whole thing out. I, Sarah, will probably be doing most of the posting and unfortnately, I'm the most computer illiterate, soooooo....please be patient!

We will be using this webpage to keep all the many, many prayer warriors up to date on our "Claudia Journey." Feel free to leave us a message in the "comments" section. We'd love to hear from you. This first blog is just going to be a trial run. So, see you next time!

We love you all!