Sunday, October 31, 2010

A Fun & Active Weekend

Wow! Where to start? So, Friday was a pretty good day (see previous post for details).  Saturday morning Caleb woke up in a good mood. Still not feeling really well, but at least in a good mood. His football team (Lobo Blue 5/6) was scheduled to play their championship game at 9:00am. He wasn't quite up to going to even watch, so we cheered them on from home.

After breakfast and a short nap, Caleb decided he wanted to go outside with his dad. So, he got dressed & went outside. He sat in a chair in the garage keeping his dad company. He stayed outside for over 2 hours! It may not seem like much to others, but it was HUGE to us. It's been a struggle just to keep him awake, much less outside.

We got a call after the football game was over to let us know that they won the game!! Each child received a trophy and a ring. We were told they even called Caleb's name out over the sound system even though he wasn't able to be there.  Coach Cassidy came by to deliver Caleb's trophy & ring to him.  He wasn't real thrilled about having his picture taken, but he did it anyway.

We met with some friends about 2pm at a Pumpkin Patch. We'd never been to one before and were all looking forward to it. They had loads of wagons there, so we were able to load Caleb into a wagon & enjoy all the sights. We enjoyed snowcones, kettle popcorn, a hay ride & a couple nice picture moments.  The other kids even convinced Caleb to get out of the wagon to go through a hay maze. He was wiped out by the time we left, but had a great time. We enjoyed a quiet dinner at home and both boys were asleep by 6:30pm!

Sunday, we went to church. He didn't want to go to his class and sat in the lobby in Daddy's arms for almost the entire service. We were blessed with a bunch of teaching materials on healing from a member of our church. After church, we came home, ate lunch & the boys took a nap. His Uncle David & cousin, Miguel, came to visit for a couple hours.  Then we met with some friends at a "Trunk or Treat" at a local church. Caleb wore his Transformer Bumblebee outfit & Caden went as a duck. We enjoyed seeing all our friends from my MOPs group (Mothers of Pre-schoolers) and the Early Learning Center Caleb went to (and Caden goes now).  The boys got a boatload of candy, ate cotton candy & popcorn.

All in all, a very good weekend indeed. We've been so pleased with the amount of activity Caleb had this weekend. We're looking forward to reducing the steroids again in the morning. Hopefully, his appetite will continue to stabilize as well.

Well, it's late and 4:30am comes very early.  Thanks so much for all of your prayers & comments. We love hearing from you. May God bless you all!

Caleb & Coach Sean

Caleb with Team & Individual Trophies
Caleb's Ring

Caleb with Team Trophy

Caleb's Trophy

Me, Caleb, Richard & Caden on the hayride.

Friday, October 29, 2010

Rejoicing in the small things.

It's now been 19 days since we received the first diagnosis. There have been some good days and there have been some not-so-good days.  Today was a good day, which is definitely something to rejoice about!

Caleb slept through the night even with all the electrodes taped to his chest and the monitor clipped to his pants.  He woke up in a relatively good mood & asked if he could have Toaster Strudel after treatment. It was refreshing to be able to tell him yes. Normally, he demands food "right this minute!" Then we have a struggle as we explain to him that he can't eat or drink until after treatment is done.

Today was my day to take him to treatment. This was my first day taking him by myself. I was a little nervous because I know that Richard usually carries him and when we've gone together, Caleb is usually not in a very good mood.  This morning, he laughed & joked with the clinic staff.

Caleb has gained about 8 pounds in 19 days due to the steroids. He's really puffy & swollen everywhere. Because of this, the mask that he has to wear during treatment is extremely tight. It was custom-fit to his face 1 week before he began radiation before any swelling started.  Also, due to the position his head has to be in, it was becoming increasingly difficult for him to breathe during treatment. His oxygen saturation level would drop from 98% to around 80%. So, this morning we were scheduled to have treatment then immediately after, another CT scan. The new CT scan is just to reposition his head, and fit him for a new mask so he can breathe easier and won't look like Spiderman after every treatment.  The doctors joked this morning that we should color in all the mesh-marks on his face for Halloween before they disappeared for the day.

We got news that we can reduce the steroids again, so we are excited about that. We'll get to reduce the steroids again on Monday. This should help his attitude improve a little and will hopefully reduce his appetite again. We have to be watchful that he doesn't start having more severe headaches or start vomiting because we'd have to increase the steroid dose again and we really don't want to have to do that. So those are a prayer focus for us, along with his complete healing.

I have a couple of songs that have been running through my head for the past 2 weeks. They comfort me daily & I thought I'd share them with everyone.

The first is an old Hillsong favorite of mine called "All The Power You Need"

This is a newer Hillsong favorite (notice a pattern here? ;) ) called "Lead Me To The Cross"

Thursday, October 28, 2010

An Unexpected Day at Clinic

We got up this morning at 4:30am, which is pretty normal for radiation day. Thursday is also our day at the oncology clinic to meet with the oncologist. We administered medication; packed breakfast & lunch for Caleb (and another round of meds); lunch for Caden; got dressed; loaded everyone into the van; & dropped Caden off at a friend's so he could still make pre-school today. Then, Richard, Caleb & I headed downtown for treatment.

Things there were running a little behind because the little girl ahead of Caleb was brought in by ambulance today. She's gotten very sick & had to have a bone marrow test done as well as her radiation. She's not even 3 yet.

Caleb was overly cranky this morning & just not comfortable in any position. He finally went in for treatment around 7:50am (about 30 minutes late). Richard & I went to the waiting area figuring that we'd be there for about 20 minutes. Over an hour later they came to let us know they were done. They had to keep stopping the treatment because Caleb was having a very hard time breathing. Dr. Murphy, the anesthesiologist, said he wasn't sure if was because of the swelling from the steroids, the position his head has to be in, or a combination of both. The mesh mask that he has to wear left deep impressions on his face that made him look like he was wearing a Spiderman mask. He said that he wanted to meet with Dr. Boike, the radiation oncologist, and make some adjustments to help Caleb breathe easier and that Friday's treatment may be impacted.

We headed to clinic with that information. We were expecting to just have a blood draw to check the levels of his medications & meet with the oncologist to review the previous week, then leave. In and out in about an hour; home before lunchtime. What happened what not what we expected.

We met with one of the members of Caleb's oncology team. Dr. Leger asked what had been going on the past week and we mentioned that it seemed that Caleb's heart was beating abnormally strong. It thumped in his chest so strong it felt almost like he'd just finished running two miles, when in actuality he was just sitting quietly on the couch.  He had also been complaining that his chest hurt on the left side near where his port is located. She asked us if he'd ever been diagnosed with a heart murmur. I said he'd had one as an infant & we were told not to worry about it because it was very common in young children & he should grow out of it.  She listened to his chest for a bit then decided to get a chest x-ray and an EKG, "just to make sure everything is okay."

So, we headed over to radiology & had the x-ray, then upstairs to the cardiology department for the EKG. We waited about 45 minutes for the EKG to be done. One cardiologist came in after the EKG was done and listened to his heart for quite a bit. She then brought in another cardiologist who listened for a bit more. They said they definitely heard a murmur and that is was probably just a small hole in his heart and nothing to worry about, but "let's do an echocardiogram, just to be sure." They said they wanted to find out where & how big/small it was.  So we waited for another 45 minutes to be called for the echocardiogram. That test took about an hour to perform.

When it was completed, the cardiologists came back in the room and said he did not have a hole in his heart after all. They then said what he has is called Hypertropic Cardiomyopathy, which basically means "a thick heart."  They then explained what it means, what problems it can cause & how to treat it, which I won't go into now. They said the most important thing right now is to keep Caleb well hydrated.  If he's having any tests done where he can't eat or drink for several hours, an IV needs to be done keep him very well hydrated.  They plan to meet with the oncology team to discuss treatment so both teams are on the same page & coordinating care between them.

Tonight, Caleb is sleeping with a port in his chest with tubes sticking out and now he also has electrodes all over his chest and a monitor clipped to his waist to monitor his heart. Thank goodness he's so tired. Otherwise, I think he'd have trouble sleeping.

So, my 5-year old son has an oncologist, radiation oncologist, anesthesiologist, and now a cardiologist. That's too many -ologists for a grown-up, much less a small child!

Lord, please hold us close to You. Give us strength to endure the treatments & medications to come. Grant us peace for the days when we feel like we just can't go on. Quiet our souls and help us focus on You. Pour out Your continual favor upon us as we meet with doctors, labs, hospitals, etc. And, most importantly, thank You for loving us!

Monday, October 25, 2010

O, Rest, Where Art Thou?

I may ramble a bit on this one, so please bear with me.

It's almost 11:30pm and I've been awake since 4:30am. I'm still wide awake while the rest of the house sleeps. I'm struggling with a bunch of different negative emotions right now -- anger, helplessness, uncertainty, exhaustion.  I'm angry that my son has to suffer because of a stupid tumor. I feel totally helpless to do anything to change the situation on my own. I'm filled with uncertainty of the future because the things I've read about this type of tumor are not encouraging at all, but since the clinical trial we are in has never been done before, the outcome is uncertain as well. I'm physically, mentally & emotionally exhausted.

I sleep for an hour or two, then wake up because Caleb is in tears. Sometimes in pain, sometimes from a nightmare, sometimes with hunger pangs from the steroids. I'll get back to sleep and the cycle repeats. It seems like 5 minutes of sleep, then it's time to get up and start all over again. Prep the meds. Coax, cajole, coerce, beg, & plead with Caleb to take them. Clean up the mess from him batting them around when he's angry. Try my hardest not to get angry with him. Listen to him beg me for food that I can't give him until after radiation is over for the day.

I'm short-tempered at Richard & he hasn't done anything wrong. The worst part is that I don't know why I'm so short-tempered with him. Then I get mad at myself, which makes me more short-tempered, which makes me madder, and round-and-round we go.

And in the midst of all this, I'm still battling with constant pain in my own body.

But, it's amazing to me that even while these negative emotions are churning inside me, I can still feel a measure of peace. We have been overwhelmed with love, prayers, & gifts from people all over. From children hosting a lemonade stand for Caleb, teenagers hosting a car wash to raise money, friends delivering meals for 6 weeks, Richard's job allowing him to work from home so he can be here through radiation treatment, blankets & toys sent to both boys from a childhood schoolmate's mother, to the outpouring of love shown to Caleb when he visited his classmates at school last week for just a few minutes.

I've heard people tell me that God won't give me more than I can handle. I'm not so sure that is true. I do know that God will never give me more than He can handle! I think sometimes He does give us more than we can handle so we have to lean on Him more and draw closer to Him than ever before. I'm not saying that God caused this tumor to happen to Caleb, because that is not true. However, He can use this situation to make us stronger, if we will let Him do so.

Many years ago, someone said something about Psalm 23 that has stuck with me ever since.  It says, "Yea, though I walk through the valley of the shadow of death, I will fear no evil for Thy rod and Thy staff comfort me."  Notice that is says, "WALK THROUGH."  It did not say to stop and set up camp. So, we WILL walk through this valley and come out stronger on the other side.

I am so grateful for God's love. His grace abounds toward us daily. His mercy is unfailing. I praise Him for holding us close to Him while we walk this road. I thank Him for the peace which truly passes understanding. 

I sometimes feel like King David in the Psalms. He pours his heart out to God ranting & raving about all the bad things going on around him, then somehow always returns to God's love, grace & mercy by the end. And since the Bible says that David was a man after God's own heart, I can live with that comparison. I want to draw nearer to God daily.

Show me, teach me, guide me, Lord. Where You lead me, I will follow. Let me continue to be still and know that You are God. Give me the patience to handle Caleb with love when his attitude is at its worst due to the pain & medication. Help me to be a better mate to Richard, to stand by his side as we walk together along this path. We are not in this alone. Show me how to be a better mother to Caleb & Caden. Heal Caleb's body and remove the pain from him. All the glory is Yours, now and forever.

Sunday, October 24, 2010

The Same, but not...

Sunday is normally an easy day for us. We get up early to get ready for church and arrive there around 8:30 a.m.  Since Richard is head usher & I sing on the worship team, one or the other of us is usually serving on any given Sunday. We drop the kids off in their classrooms & enjoy the service. When it's over, we leave between noon & 1pm to go home.

The past two weeks, neither of us has served. We sat in the back with Caleb because he didn't want to be away from us (mostly Daddy). By the time service is over, Caleb is exhausted. He's slept most of the day for the past two Sundays. It's so odd to see my normally very active child sleeping so much.

I wish I could take his pain and exhaustion away. I wish we didn't have to deal with this all. But, since I can't take his pain away and we do have to deal with it, we'll do the best we can with God's help. We trust in Him for everything around us. We praise Him for the small improvements we see in Caleb. We praise Him when there's no change at all. We praise him in the midst of our storm. We know He's in control. He was not taken by surprise when this happened. He knew about it before we did and prepared us for it. I'm so thankful we serve a mighty God. He will be glorified in everything that happens.

Caleb has mighty things in store for his life and I look forward to seeing him accomplish them.

I love you, my miracle child.

Saturday, October 23, 2010

The Newest Member of Our Family

We'd like to introduce everyone to the newest member of the Huffines Family:

Caleb & Candy Cane

This is Candy Cane. She is a dilute calico who is approximately 6 months old. She is very gentle, loves to be cuddled, enjoys belly rubs & ear scratches & has quite a motor for a purr. She is not bothered by dogs or small children, which is definitely a plus since our home has both already!  Candy has been adopted from the Denton Animal Shelter. She was on an "urgent adoption" list to avoid euthanasia.  She's on her way to the vet for shots, spaying, deworming, flea treatment & microchipping. We'll be bringing her home on Tuesday after radiation treatment.

As you can see in the picture, Caleb is very excited about having her. This is one of the best smiles we've seen from him in over 2 weeks!  He was quite upset when he realized we couldn't bring her home immediately. Once he realized that it was for her safety, he settled down & asked to go eat (one track mind on that child these days).

I know a couple people asked if we'd checked with the doctor before adopting. We didn't need to. We had already confirmed through prior conversations that pets were not an issue with Caleb's treatment because he is not having chemo done. The radiation won't weaken his immune system as much as chemo does. The steroids actually weaken it more than the radiation and we've already begun to wean him off the steroids.

We'll post more pictures of Candy (alone & with the boys) after we pick her up on Tuesday.

Welcome to the Huffines family, Candy!

Friday, October 22, 2010

One Day at a Time

We are now on Day 3 of radiation treatment. It does seem to be getting a little easier. At least he didn't wake up yelling, "I'm hungry. Give me something to eat NOW!" He just asked if he could have donuts after treatment. He's finally starting to understand that he can't eat until his treatment is over.  He's also been much more alert the past couple of days.

Yesterday, we were able to take him to his school to visit his teachers & classmates. The kids were all so excited to seem that they were jumping up and down. He got a bit overwhelmed with all the commotion, but he did smile quite a bit & I think it took his mind off things for a while.  When we finished at the school, we came back home & ate lunch. After lunch, he napped for about 1.5 hours -- much shorter than the 3+ hours we've been having.  He also stayed up until 6:30pm before he crashed for the night. That was much better because then he was able to sleep through the entire night in his bed!  Woohoo! Mommy got 6 hours of uninterrupted sleep!

Caden is on his way home from Gma's house. Caleb has really missed having his brother around for the past 2 weeks.  It will be good to have them both together again.

We met with the oncologist again today. He mentioned that the latest MRI they have shows some bleeding in the tumor. This MRI was taken the day before radiation began. He said that it looked like "old" blood & doesn't appear to still be bleeding actively. They will have to wait & see what the MRI in December shows. If it shows any sign of bleeding, Caleb won't be able to continue in the study because the medication added at time would be too dangerous for him.  We're praying all bleeding stops & there are no signs in any future MRI scans.

Thursday, October 21, 2010

The Journey Begins

We started noticing changes in Caleb in August 2010. It was a bunch of little things that didn't seem to go together. Everything we noticed was easily blown off as part of something else.
  • Headaches? Oh, that's just his allergies acting up.
  • Tired, worn down, glazed look in his eyes? He's just started kindergarten & isn't used to going all day every day.
  • Slurred speech? It's late in the day and he's exhausted from school.
  • Pain in his legs & bruises we didn't know where they came from? He's playing football. You get hit in football & get bruises.
  • Uneven gait & overly clumsy? He's a growing 5-yr old.
  • Talking back & bad attitude? He's a growing 5-yr old boy.
  • Not buttoning, snapping, or zipping his clothes (saying, "I can't")? Regression / rebellion because of his little brother.
It wasn't until the 2nd meeting with his teacher on October 7th that I decided to schedule an appointment with the pediatrician. She mentioned that it seemed that Caleb was working really hard to hold his pencil & it appeared that he was struggling to get the thoughts from his head to his mouth.

Saturday, October 9th, we went to a birthday party for his friend, Jordan.  While there, the other parents noted that Caleb seemed really "off." I mentioned that I was planning to call the pediatrician on Monday & they agreed that I should.

Sunday, October 10th, we got up to get ready for church as normal. Once there, he tripped over his own two feet within 5 minutes of walking in the door. I noticed he seemed to be dragging his right leg behind him a little, but didn't really think a lot about it. I thought that maybe he hurt it a little when he fell. A friend took the boys to a classroom to play so I could have a bit of a break before service started. When I went to get them, she asked if Caleb was right-handed. I replied that he is. She said he wasn't using his right side at all & was doing everything with his left hand. When I helped him up, his right hand & arm were very cold. His left was warm. I went to Richard & told him that we needed to call the pediatrician right away. He agreed.

I called the pediatrician & told him what was going on. When I described that Caleb was experiencing slurred speech, a real "spaced-out" look, his right hand hanging limp at his side, dragging his right foot behind him, the headaches, etc., he told us to take Caleb to the ER immediately. In my mind, I was beginning to think that Caleb had had a small stroke. On the way to the ER, he would scream such mean things that were not things Caleb would normally say. "I hate you. I'm going to kill you. You're a bad mommy." I started thinking maybe Tourette's. Then I thought back to the spacing out & not looking us in the eye & wondered if maybe it was Autism. I mentioned it to Richard & said, "There's no way he could have Autism, Tourette's, a stroke & developmental delays all at the same time. Something is seriously wrong with him."

We arrived at Children's Medical Center in Plano & told them our pediatrician had sent us. We explained what was going on to them. They immediately took us back to a room. When the doctor walked in, she greeted us and got some background history. Then she began her exam of Caleb. She asked him to smile real big & he did. When the right side of his face didn't move at all, she turned to the nurse & said, "Schedule a CT immediately." My stomach sank. Then she asked him to raise both arms straight out like Superman & close his eyes. He did & his right hand went straight back down. I got a very sick feeling in my stomach. He went in for his CT and we waited.

Our journey begins...

NOTE: The posts below from October 10th until October 21st are posts I created on Facebook prior to creating this blog. They will give additional background.


Wednesday, October 20, 2010

FB Posts 10.20.10

Wednesday, October 20, 2010 9:38 AM
Day 1 of our 6 weeks of treatment began this morning. He woke up (on his own) at 3:15 am saying he was hungry. Of course, we couldn't give him anything until after treatment was over, so he wasn't very happy with us. All went well. He ate 2 PB&J sandwiches, sausage biscuit, bowl of Froot Loops, apple juice & milk!

Tuesday, October 19, 2010

FB Posts 10.19.10

Tuesday, October 19, 2010 4:01 PM
We have another MRI, x-ray, bloodwork & meeting with oncologist early in the morning. Caleb can't eat or drink after 1:30am. Please pray he doesn't have much appetite until after the appointment is over.

Monday, October 18, 2010

FB Posts 10.18.10

Monday, October 18, 2010 9:16 PM
We have another MRI, x-ray, bloodwork & meeting with oncologist early in the morning. Caleb can't eat or drink after 1:30am. Please pray he doesn't have much appetite until after the appointment is over. 

Sunday, October 17, 2010

FB Posts 10.17.10

Sunday, October 17, 2010 8:43PM

From Richard:  Caleb was wanting me to be with him outside church today. He was wanting to eat his donuts. Caleb looked over and saw Amie with both of her youngest trying to pick them up. Caleb says, "Daddy, will you go help her out? I will be okay here."



Sunday, October 17, 2010 9:06 PM

From Richard:  When you here about the peace of God, what does that make you think about? To me, it's the peace that is so far down in you and covered over you. That when you try to explain it, adequate words doesn't come to your mouth. When your done, you feel that you haven't even begun to explain the peace God has for you. I have this peace. Thank you Lord.



Saturday, October 16, 2010

FB Posts 10.16.10

Saturday, October 16, 2010 8:00 AM
First day in a week with no doctors, no tests, no shots. Just medicine today. Caleb's still doing well taking it. Fusses a little, but not like in the beginning. He's battling headaches lately, but he keeps on going. 

His brother, Caden, got home last night. I have to take him to Acute Kids Urgent Care because he's been running a fever & vomiting for 3 days now. I can't let Caleb get whatever Caden has or we'll be back in the hospital!   

Saturday, October 16, 2010 4:49 PM
Emma & Noah decided they wanted to have a snow cone stand to raise money for Caleb. They are some great kids with huge hearts!

Saturday, October 16, 2010 7:53 PM
From Richard:  Mom and Nana came up with Caden this weekend. It was real nice to have them here.

Saturday, October 16, 2010 7:56 PM 
From Richard: Going to try and make it to Church tomorrow. God is good, and He has really taken care of us this week. Let's all get our praise on tomorrow.

Friday, October 15, 2010

FB Posts 10.15.10

Friday, October 15, 2010 6:23 AM
Leaving for next procedure. Back in a few hours.  

Friday, October 15, 2010 11:38 AM
We got back home about 9:45am. Caleb did fine with his procedure. When his 10am med time came, he took it with no fuss even though it tastes horrible. I'm so proud of him. He's napping right now. Much-needed nap at that. 

Thursday, October 14, 2010

FB Posts 10.14.10

Thursday, October 14, 2010 1:05 AM
Caleb woke up in a little pain from his procedure yesterday, but didn't want to take anything because he was afraid it would keep him from being able to go home. I reassured him he could take it & we could still leave. He asked to play Star Wars. By the time we got it set up, he says, "Star Wars, Internet" 3 times & fell asleep again! Too cute!!

Thursday, October 14, 2010 1:20 AM
From Richard: We are headed home today. With God's hope, there is no fear. Show me, Guide me, Teach me... This is my prayer. If you do not know God, seek him. Do not settle for anything less. He will give you peace.

Thursday, October 14, 2010 5:32 PM
From Richard: We are home! Psalm 28:7 The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.

Thursday, October 14, 2010 9:00 PM
Caleb is home & asleep in his own bed surrounded by all the stuffed animals he got while in the hospital. It's been a very busy day & he's been such a trooper through it all. Another test in the morning bright & early. Please pray that Caleb stays cooperative while taking the medications he has to have. He doesn't like the taste of them, but is still taking them without too much fuss.

Wednesday, October 13, 2010

FB Posts 10.13.10

Wednesday, October 13, 2010 4:00 AM
We've been awake since 3:10. Caleb woke up saying, "Mom, they stuck this in me AGAIN!" His IV had to be reconnected at midnight in preparation for his procedure this morning around 7:30. His hand is very sore. Thankfully, he'll be able to have the IV removed from his hand after this procedure. Really need more sleep now. More later.‎

Wednesday, October 13, 2010 4:24 AM
Caleb's hand has really been hurting this morning where his IV is inserted. Richard & I have been praying for him. He turned to Richard and said, "Daddy, thank you for praying for me." Makes me so happy to know we've been raising him to be a man of prayer.

Wednesday, October 13, 2010 4:29 AM
From Richard: In the midst of his storm, Caleb says "thank you for praying for me." God is at work in this mans body. Lord thank you for healing my boy Caleb.

Wednesday, October 13, 2010 5:00 AM
From Richard: I want to thank everyone for your prayers. Our God is the healer. It is through his grace which we have peace. God never said it would be easy. However he did say He would never leave us. He gives us the hope and I am thankful for this. Lord thank you for your healing.

Wednesday, October 13, 2010 6:25 AM
Caleb was just brought down to the day surgery unit. His procedure is scheduled to start at 7:30am & should take about 45 minutes to 1 hour. Then to recovery before heading back to the room. Lord, guide the hands of the surgeon so this port is inserted quickly, easily & with no complications. Amen. He said when he comes back to the room, he wants donuts & IHOP.

Wednesday, October 13, 2010 11:25 AM
Caleb did well having his port inserted. He got back to the room about 10am & immediately asked for a donut. He's been eating small bits since he returned. Full breakfast spread: eggs, sausage, ham, pancakes, French toast sticks, strawberries, & milk. More later.

Wednesday, October 13, 2010 5:15 PM
The doctor has said that (barring any complications tonight) we will be released tomorrow morning!!! We have a 10am appt tomorrow then we'll get to go home. Caleb is very excited about leaving. Please pray there are no complications so we can still be released tomorrow. Thanks again for all your prayers! It means so much to us.

Wednesday, October 13, 2010 7:55 PM
Caleb's teacher & assistant principal just left. They brought pictures/cards from all of his classmates. He was very excited to see them & read the cards. Thanks to everyone, again.

Tuesday, October 12, 2010

FB Posts 10.12.10

Tuesday, October 12, 2010 2:24 AM
‎ I'm awake watching Caleb sleep. We are focusing on the positive in all this. We've been hearing sermons for a couple months on HOPE. I believe God was preparing us for what was to come.

I also believe His timing is perfect because only 24 kids are being accepted into this clinical study & they want Caleb to be a part of it. That tells me that God already prepared the way for Caleb's healing to take place & help other children at the same time so He will be glorified in it all, which is our hope & desire. 

I think right now we're leaning towards giving him the best possible chance of survival and the study won't have worse results than the standard.

BTW, I just want to say thank you to everyone who is praying for us. If I'm not able to comment back, please know that I am reading all comments. Feel free to repost any of my updates to your friends/family as well. I believe in the power of prayer and am uplifted knowing people around the world are praying for us in the midst of this trial.

Tuesday, October 12, 2010 9:30 AM
CALEB'S FINALLY CLEARED FOR SOLID FOOD!!!!!!! He's asking for a cheeseburger so as soon as the orders from the doctor go through, we're ordering a cheeseburger. He is going to be one very happy camper soon!

Tuesday, October 12, 2010 11:45 AM
Since being cleared for solid food, Caleb's had: a pudding, 8 cookies, crackers, snack bar, 1/2 cheeseburger, 1/2 order of fries, 1/2 bowl of fruit, 1/2 carton of milk, 2 apple juice boxes & a piece of gum. He's now napping with a full tummy. The only reason he didn't eat the full cheeseburger & fries is because it was a HUGE burger -- adult sized. I couldn't even have eaten all of it.

Tuesday, October 12, 2010 10:40 PM
Sorry for the long delay in update. Been a very busy day. Check comments for more details cause it won't all fit here! Meetings with physical therapy, occupational therapy, social workers, child life specialist, oncologists, surgeons, etc. Caleb's still eating/drinking well. He wants to go home more than anything. He's supposed to have a procedure done tomorrow morning to place a port (central IV line) into his chest. When we start treatment, he'll have to be sedated each time because of his age. If all goes well, there is a chance we may be discharged tomorrow and start everything as out-patient.
Thanks so much for all your prayers. I feel very peaceful in the midst of this storm & I know it's because of your prayers.

Monday, October 11, 2010

FB Posts 10.11.10

Monday, October 11, 2010 12:42 AM
Thank you so much to everyone for your outpouring of love, prayer & support. We are so overwhelmed. Fortunately, Caleb doesn't understand what's going on at this point. We pray for God's strength, peace & wisdom in all we do. We know He is in control & this will be for His glory. The reports we received so far are not encouraging, but we will not give up. We choose to believe the report of the Lord, which says that Caleb is healed and whole. 

Monday, October 11, 2010 1:35 AM
From Richard:  Thank you all for your prayers for Caleb. We know Gods word is true.

Monday, October 11, 2010 4:25 AM
Well, it's 4:23am & Caleb is WIDE awake! He's more alert than yesterday & is going for a ride around the unit in a wagon as I type. His right side is showing improvement, which means the steroids they're giving him are helping reduce any swelling present. MRI in a few hours & we'll begin to have a better idea of what we're dealing with here. Thanks to all for your continued prayers.

Monday, October 11, 2010 6:33 AM
6:30am & Caleb's starting to get more & more upset because he can't have anything to eat or drink. He's not had any solid food since breakfast Sunday morning. He can't have liquids until after the MRI & no solid food until we get the okay from the speech therapist. Please pray the speech therapist comes early and gives the okay for solids.  

Monday, October 11, 2010 8:02 AM
8am - Neurosurgeons came back in. Head of neurology confirmed that tumor is inside the brain stem & inoperable. Projects that treatment from oncology will be radiation & chemotherapy. Won't know more until meeting with oncology group, which will likely be after the MRI.  

Monday, October 11, 2010 11:19 AM
From Richard:  Angela and Caleb are finally resting (asleep). Still no news on the MRI time.  

Monday, October 11, 2010 12:29 PM
‎Still waiting to have MRI. Richard convinced me to come downstairs to eat. I don't want to. I feel guilty eating while my baby lies upstairs begging for a Popsicle & I can't give it to him. This is sheer torture. Lord, please hold us in Your arms so we can get through this.  

Monday, October 11, 2010 12:30 PM
From Richard:  Caleb is healed. Mark 5:25-29. Caleb is reaching out to touch His garment. God is our healer.

Monday, October 11, 2010 4:02 PM
‎4pm and we are FINALLY about to have the MRI done! He is soooo hungry!  

Monday, October 11, 2010 5:36 PM
From Richard:  MRI just started. It will be 1.5 hrs before he is awake and ready to eat. We are moving rooms to oncology now.  

Monday, October 11, 2010 8:11 PM 
From Richard: Caleb is back in the room. He asked for agua, popsicle, and apple juice in that order. He is now asleep.

Monday, October 11, 2010 10:46 PM
From Richard:  We had an initial meeting with the oncologist. We've been given a couple options. One is the "standard" treatment for this type of tumor. The other is an experimental study with additional medication. We need guidance on what to do. The "standard" treatment has a 15% survival rate after 1 year. The experimental study has unknown results, but hopes for a longer survival rate .


Sunday, October 10, 2010

Worst Day of Our Lives

Sunday, October 10, 2010 12:04 PM
We're at the ER with Caleb. Don't know yet what's wrong. His right side is not functioning properly. CT scan done, more tests to run. Please pray we find out what's going on quickly & that it's not serious.

Sunday, October 10, 2010 12:11 PM
We're not sure what's going on. His right side is not responding normally, slurred speech, diminished motor control.

Sunday, October 10, 2010 12:49 PM
Caleb has a mass at the base of his brain. We're being transferred to Children's medical downtown. MRI & other tests to be done there as well as meetings with neurosurgeon & oncologist.

Sunday, October 10, 2010 5:49 PM
Met with neurosurgeon. He says mass is located at an inoperable location. Oncology group will meet us tomorrow. MRI scheduled for tomorrow morning. We'll be transferring to oncology ward tomorrow as well.

Sunday, October 10, 2010 11:34 PM
"Hold me Jesus, 'cause I'm shaking like a leaf. You have been King of my glory, Won't you be my Prince of Peace."

 Sunday, October 10, 2010 11:54 PM
We're scheduled for MRI first thing tomorrow morning. Then to meet with oncology team later in the day as well as a consult with a speech therapist. Please pray for favorable results with the speech therapist so they can take him off the clear liquid diet. They're concerned about possible choking while eating.