Hunger in the Night

Well, it's begun in earnest now. Caleb's up a few times each night with one thought on his mind -- FOOD!  It's hard to balance his eating when all he's craving is junk food. I've finally found some pants that fit him in the waist & length, but don't know how much longer they'll fit if he's eating all the time.

The good news is that the increase in steroids still seems to be working. We decreased the amount to 1 ml twice a day on Christmas Day. So far, all continues to go well.

Caleb went ice skating on the 23rd with Aunt Dar & one of his 2nd cousins. They got his skates on, but he was so unsteady, he decided he didn't want to skate after all.  At the end of their session, after everyone else was off the ice, they managed to coax him on the ice for a couple minutes.  He told Aunt Dar that it was his best day ever, and she provided the best present that wasn't wrapped.

Christmas Eve dinner with the family went well. Caleb slept through the first half of it though. He has been going nonstop since we got here, so he's napping much more often.  He got several new toys. We broke out his new Hungry, Hungry Hippos game for him to play with Uncle Andy & Daddy. Somehow, he managed to choose the one hippo that had a tougher lever to press. He got so frustrated and started screaming because he couldn't press it even with his left hand. Fortunately, we got him calmed down fairly quickly and just switched him to another hippo. It's too bad he couldn't keep using the one he had because its name fits Caleb so well right now --- Bottomless Potamus! We're thinking of changing the name of the game to Hungry, Hungry Caleb.

Christmas morning, we finally opened the last set of Battle4aCure.org gifts. I couldn't believe how many gifts were able to fit into that bag. Thank you, thank you, thank you, to our wonderful Battle4aCure angels. We'll post more pics to Facebook as soon as we can.

Caleb's Uncle Bernie, Aunt Jennifer & cousin Emmanuel arrived last night for a short visit on their way back home. Caleb was so excited to see them & even more so when he found out they would still be here this morning when he woke up.

We're looking forward to a few more days of fun with family before heading back. We're considering heading back early because Caleb is getting really homesick for his cat. He wants to hold his Candy Cane.

Another Medication Increase

We had our clinic appointment on Thursday, December 16th. The doctor was stunned at the decline Caleb's had since Thanksgiving.  They still believe it is a result of the swelling caused by the radiation. So, they've increased his steroid medication from .5 ml twice a day to 1 ml three times a day for a week then to 1 ml two times daily.

We were concerned that they wouldn't let us leave for vacation because of his condition. They told us what to keep watch for and sent us off with the new increased medication directions.

I'm not really happy about having to increase the steroids again, because his attitude is the pits already & the steroids make it worse as well as increasing the hunger.  However, if it helps decrease the swelling and improves his walk & other symptoms, then I'll gladly give it to him.

It is now Saturday evening, and we can already tell a positive difference in his walk. He's enjoyed the day with his cousins, aunts, uncles & grandparents. He fell asleep about an hour ago and is already looking forward to visiting with family again tomorrow.

Please continue to pray that  the swelling continues to go down & we get a good report for the MRI on January 11th.  We also need prayers for his physical therapy (PT) appointment on January 4th. I'm not sure how he's going to respond to therapy for a full hour since we only made it through 45 minutes at OT before a meltdown & absolute refusal to continue.

OH! I almost forgot to mention that we were blessed to be adopted by our local Lowe's for Christmas. They came by on Friday morning and presented us with numerous gifts.  I'll upload pics as soon as I can get to a compatible computer. Thank you, Lowe's!! The boys love their gifts & we appreciate everything you did for us!

Update

Since we are finished with radiation, we've been working on adjusting Caleb's medication schedule to something that works a little better for us. We have him at a 3am, 11am, & 7pm schedule now. Since our appointment on Thursday is at 10:15am, we're hoping to have his labs drawn when we first get to clinic instead of having to wait around after our appointment so it's close enough to his next dose.

His school's Christmas party is at 1:30pm that afternoon & they really want Caleb to be there, so we are really hoping to be done with labs & the visit with the doctors by noon so we can get to the party on time.

We also wanted to let everyone know about a couple developments here. His Occupational Therapy (OT) evaluation was last Thursday & he made it through about 45 minutes before he shut down on us and refused to even try anything else. His frustration level is mounting & he is having more meltdowns than normal. We've also noticed this past weekend that Caleb's gait is getting more unsteady again. He's getting more clumsy again & is not able to run much any longer.  He's also not using his right hand or arm as much any more. He's having more difficulty with using utensils in his right hand & can't do small buttons or zippers. He's also having difficulty opening our back door to let the dog out.

When I was researching information a few weeks ago, I kept running across reports from doctors saying that kids with DIPGs will seem to do really well with radiation treatment and then go downhill a couple months after it is finished. Of course, this is pretty disheartening news. I have to keep reminding myself that these other kids they're talking about were not on our treatment plan. They were only getting radiation. They were not getting the additional medications Caleb is getting.

We are intensely praying that these new developments are a setback caused by swelling of the tumor due to the radiation treatment itself. This next month of waiting for the next MRI is going to be hard for me.

Please continue to keep our entire family in your prayers. I am having a bit of a difficult time lately staying strong. It hurts me to see Caleb like this and I'm struggling to keep from crying in front of him. I don't want to upset him. It's getting harder & harder to hold it together sometimes. I know God is in control no matter what!

Thank you for your positive prayers!

A Little Disappointed

Yesterday, Caleb & Caden had an intestinal virus. Caden is better today, but Caleb is now on day 2. We've changed clothes & bed linens too many times to count. At 3am this morning, Caleb started vomiting. So we immediately called the after-hours doctor. They said as long as he wasn't running a fever & was staying hydrated we'd be okay. But if he wasn't better in a couple days, call the clinic to schedule an appointment. They called in a prescription for Zofran to help with the nausea & vomiting. Richard drove to the drugstore at 3:30am after having only an hour of sleep. (What a dad!) We gave Caleb the zofran and he was finally able to fall asleep thanks to the medicine. We slept until 8am then it started all over again.  Thankfully, he hasn't vomited any more so we're feeling good about that.

But, tonight is the Christmas party for the patients and staff from clinic. We were scheduled to go. We've decided that since so many of the kids there may have weakened immune systems (like Caleb's is now), that it's not fair or wise to go the party and possibly pass this on to any of them. The other patients might not handle it as well as Caleb is and could end up in the hospital. We certainly don't want that to happen.

So we're a little disappointed cause the kids won't get to go to the party. There were many activities planned that they both would have loved. And, Caleb was really looking forward to seeing his friend, Sydney, tonight.  I called her mom to let her know we wouldn't be there. At least we'll get to make plans with Sydney after New Year's.

I guess the good news is that if this had to happen, I'm glad it happened before we left for a visit with family. And, we're comforting ourselves with some delicious Chicken Tetrazzini that a wonderful friend made for us.

Please pray that this intestinal thing passes quickly with no ill effects. He's still not running any fever and we want to keep it this way.

We Are Blessed Beyond Measure

I just wanted to take a few minutes to say "Thank You" to everyone who has blessed us so much since Caleb's diagnosis. We have been so extraordinarily blessed and surrounded by such wonderful people during this very difficult time. I have been remiss in sending 'thank you' notes out, so I would like to apologize to those people I haven't sent them to. My heartfelt thanks go out to all of you.

These are just a few of the things we have been blessed to receive...

• A prescription refilled & a new pair of earrings purchased while we were in the hospital
• Meals on Monday's, Wednesday's & Friday's through the entire six weeks of radiation treatment. It was such a relief to not worry about what to cook.
• $100 gift card to ToysRUs for Caleb
• $40 gift card to Caleb
• Numerous balloons & stuffed animals
• A beautiful (& huge) balloon/snack basket for Caleb
• Childcare for Caden while taking Caleb to radiation treatment
• A thorough house cleaning
• And many, many additional wonderful & generous gifts

We were also put in contact with a fantastic organization called Battle4aCure.org. The people there have sent Caleb & Caden what they call "Hope Boxes." Between Battle4aCure.org and a sister group, we have received several deliveries with presents in them between November 30th and today.  After the first box arrived, I thought that was it & set the box aside to be able to open Christmas morning. Two days later, we received two more boxes. The next day, another box arrived.  A few days later another box was delivered. One night earlier this week, the doorbell rang at 8:30pm. We thought it was one of our neighbors. I opened the door to find a large gift bag filled with wrapped presents in it and a lady walking away from the door. She turned back and asked, "Are you the Huffines?" I replied yes & she said, "Merry Christmas" then turned and walked away. I never even got her name. The bag was signed, "Merry Christmas to Caleb & Caden. From your Battle4theCure Angel"  I brought the bag inside and began to cry. Caleb asked what was wrong and all I could do was continue to cry at the generosity of strangers. Richard explained to him that they were "happy tears."  We've always been the ones to give of ourselves to others in need. We never expected to be on the receiving end of it. It has been a truly humbling experience for us. 

So, we would like to send a very special "Thank You" to the following people for their love & generosity with the Christmas gifts for our boys:  

• The Sathianathan Family
• The Lacour Family
• The Habbitt Family
• Mariesha Williams
• Battle4aCure
• Our door-to-door delivery angel

Pictures of the boys opening their gifts have been posted to a Facebook album here: 

Battle4aCure.org Christmas Hope Boxes

We would like to wish everyone a very Merry Christmas. Remember that Jesus Christ is the reason we celebrate!

Last Day of Radiation -- COMPLETE!!

Finally! We're done with radiation. We made chocolate chip cookies to take to the center to celebrate. The staff & other kids loved them. Everyone was sad to see Caleb go. He has always been so loving & sharing. He's the one who came up with the idea for the "snack swap" with the other kids. He's made so many people smile & laugh while he's been there.  Wednesday while getting set for his treatment, he heard "Holly Jolly Christmas" on the music player in the radiation room.  He misunderstood a phrase in it and said, "Ho, ho, the missing toe!?" We all had a good laugh at that one. Dr. Murphy said he'll never be able to listen to that song again without thinking of Caleb. Richard said the nurses were taking pictures of him and asking how they can keep up with what's going on during the rest of his treatment, so ... "Welcome to the blog, UTSW!"

In other "Clinic Day" news, all the doctors seem to agree that Caleb's slight setback was a result of possible swelling of the tumor due to the radiation treatment itself.  Since he seems to have stabilized and is improving again, they want to keep him at the same level for the steroids for a couple more weeks to make sure any swelling of the tumor has stopped before reducing the steroids again.

They have also changed the date of Caleb's next MRI. It is now scheduled for January 11, 2011, at 7:30am. We'll have to be there at 6:30am for admitting.  I know that seems like a long time to wait to see what's going on, but the doctors believe it will give us a more accurate picture of what's happening with the tumor. That amount of time should give any swelling time to subside.  We'll wait with great anticipation of them saying, "Tumor? What tumor? There's no tumor anywhere in this child."

Caleb also had his follow-up appointment with the cardiologist about the Hypertrophic Cardiomyopathy (thick heart) issue.  After our last visit, they had Caleb wear a Holter Monitor overnight to make sure there no additional problems.  We were told we'd have the results within one week. We never heard back from them. We assumed that "no news is good news" because if he had a serious condition, they'd surely call.  Well, they did another echocardiogram on Caleb. When the results came back, the doctors were a little stumped.  Apparently, the leaking hole he had in his heart is no longer leaking and they can't even find where it was! Their exact words were, "We can't explain why it's not leaking anymore."  (But, WE can!!!)  They also said that they would have expected his heart to have thickened some more since the last visit. Not only has it not thickened any more, but it also appears to have gotten better!!!! OUR GOD IS AWESOME!!!!! All thanks and praise belong to Him!

Great Weekend But Minor Setback

I know I haven't updated for a few days, but this holiday weekend has been kinda busy.  We went to visit Caleb's grandparents for Thanksgiving. He had a blast playing with his cousins (Kenson & Kayleena) from Tulsa who were also visiting. He even got a surprise visit from one of his cousins (Jordyn) from Louisiana who was  in the area for a surprise visit to one of her friends.

After spending several hours playing with Kenson's Nintendo DSi, Caleb is now convinced he is going to enjoy the one he won from school from the fundraiser. It's supposed to be in this week & he's excited about getting it. He's hoping it's also a DSi, but I think it's only a DS.

We drove back Friday night. Saturday was Caden's 2nd birthday & the boys got a surprise visit from their Aunt Darlene from Louisiana who was visiting her friend locally. Later that afternoon his Uncle Andy & Aunt Deanna arrived. They drove over from Louisiana to spend some time with him.  Kinda cool that they all drove over separately from the same area at the same time. I guess they just couldn't wait until Christmas to see him. :o)

Uncle Andy & Aunt Deanna will get a chance tomorrow morning to see exactly what Caleb's radiation treatment is like. They are meeting us at the radiation center tomorrow morning then going to breakfast (IHOP again) before heading off to spend some alone time.  (I actually have some video of Caleb racing the doctor & giving himself the sedation medicine which I hope to upload soon.)

AND....It looks like the end of radiation is finally in sight!  We are scheduled for our last 4 radiation treatments this week. Woohooooooo!!  We are so ready for this to be over.

We did have one minor setback over the weekend. Since we decreased Caleb's dexamethasone (steroid) on Nov. 18th, he's had several headaches and has started showing some sign of weakness on his right side again. We checked with the doctors on Saturday and they increased the steroid back to 0.5 ml twice a day.  Since we added the extra dose back in, he hasn't had a headache. His appetite is picking up again, though, so I'm not looking forward to the "Mommy, I'm hungry. Give me something NOW" phase again.

I'm really hoping that the right-side weakness is just because he's been so active the last few days and hasn't wanted to rest much. He's played so hard and had so much fun visiting that he's a bit worn out, but doesn't want to risk missing anything by resting.

In other news, I've now officially turned in the paperwork for the Make-a-Wish program & Caleb's been invited to his first Christmas party! Apparently, the clinic has a "holiday celebration" for all the patients and immediate family members along with the clinic staff every year. It sounds like a lot of fun & Caleb's already looking forward to going.

Well, it's getting a bit late and 4:30 a.m. is still too early to get up, but we do what we must.

Happy Thanksgiving!

Today is a good day to be thankful. Caleb has been playing hard all day with his cousins. He's been so excited all week about getting to see them today. While we were driving here last night, we told Caleb that he could stay up as late as he wanted because his cousins wouldn't be there until late in the evening. He said that he knew he could stay up late because he was going to be at the "spoil house."  We laughed with him. We know he gets spoiled at his grandma's house & he loves it.

We're a little concerned that we may have to increase the steroids again. Since we decreased it last week, he's had a headache almost every day. I have a feeling that as soon as we notify the doctors they will increase it again. We're not looking forward to that. He's been responding to everything so well & we're just ready to have his eating under control again.

Please pray that his headaches cease & we don't have to increase the steroids again.

Worn Out?

Caleb woke up last night at 11pm complaining of his teeth & head hurting. We checked him for fever (none), gave him some tylenol for the pain and put him back to bed. At 3am, he was back in our room still in pain. Had a low-grade temp of 100.4 for about an hour then it started dropping on its own. We gave him some stronger pain medicine (codeine) and let him sleep in our bed until 4:30am when it was time for his regular meds. He slept until time to leave for radiation & fell back asleep in the truck on the way there. When finished with treatment, he didn't eat his usual amount of food for breakfast. When he got home, he didn't want to eat (unusual) and asked to go to sleep. He's been asleep since. It's now 2pm & he's still sleeping.  I guess all the activity over the past couple of days has just worn that little man out.

Another Amazing Day!

Today is the beginning of a short week of radiation. Caleb does not like to have his port accessed at all, but he still handles it like a trooper.  After radiation, he came home and ate his 2nd breakfast. Then we all got ready to go to the park (Caleb's suggestion).  The boys played on the slides, climbed, jumped, rolled, & swung for about 45 minutes.  This may not seem like much to some, but 3 weeks ago, Caleb was only able to climb the slide one time before he was so exhausted he wanted to go home.  Today, we almost had to drag him away. And, that was only because his dressing over his port had come loose and we needed to get it taped back together to keep any problems from arising.

We stopped at Sonic to pick up lunch then headed home. After lunch, Caleb went with me to have Candy Cane's stitches removed. We got home and then Caleb asked to take a walk around the block. Richard and I discussed whether we should bring the 3-wheeler with us because if he got tired halfway around, neither of us would be able to carry him back because we were taking the dog too. So, we told Caleb we were taking the 3-wheeler for Caden to use. That way, if Caleb got too tired, we'd just switch out kids in it. He walked the entire block!!  Sometimes even running ahead of us for a bit!

God's glory shines all over him as we watch his healing taking place. Enjoy some pics from the park today:

A Beautiful Smile

Climbing High

 

On Top of The World

Following His Brother's Footsteps

You ready?

Let's Do This!!!!

Caleb Wants Some Help With A Game

Caleb has created a game to play while traveling in the car that he would like to spread around the country (or world!).

Most people know how to play the Slugbug/Punchbug game with Volkswagon Beetles. This game is similar because you are still hunting for a particular type of item. The biggest difference is that you are actually hunting for a specific color -- YELLOW!

When you see something yellow, you call out the color and the item.

Examples:
Yellow Car
Yellow Truck
Yellow Van
Yellow SUV
Yellow Jeep
Yellow Machine (Construction Equipment)
Yellow Man (construction worker dressed in yellow)
Etc.

RULES:
1. Game starts when your vehicle engine starts & ends when your engine turns off. This way you give all participants a chance to win during one trip.
2. Vehicles/equipment must be moving or have a person in it.
3. Cars in a dealership do NOT count.
4. Yellow signs and/or buildings do NOT count.
5. You score 1 point for each yellow item.
6. A Yellow Slugbug/Punchbug is worth 10 points.
7. The person with the most points at the end of each trip segment wins that segment.


Please pass this post on to help us spread this game as far as we can. I'd love to have updates to see how far this is spreading from Texas.

Thank you & please keep those prayers coming. We'd love to see the results from his next MRI show no tumor at all.

To God be all the glory, honor & praise!

What a Great Week!

This has been a fabulous week. Caleb is getting better each and every day. Not only is he racing Dr. Murphy down the hall to treatment, but he has begun walking into the center from the truck. For the first couple of days, we still brought the 3-wheeler in with us, just in case he changed his mind. He would walk in, then ask to ride out after treatment was over.  Wednesday & Thursday, he not only walked in but he also walked out! AND.... since Thursday is clinic day, we headed straight to clinic after radiation. He walked from the parking garage, across the skybridge over the street, down the hall, around the corner, down the elevator, down another hall and into clinic BY HIMSELF!!! He then walked most of the way to see the trains at the hospital & he only asked to ride in the 3-wheeler for about 5 minutes the entire time we were at the hospital.  Friday, we left the 3-wheeler in the truck (his decision)!

He's become quite fond of a beautiful little 4-yr old girl named Sydney. She is just adorable. Caleb has asked if she can come over for a playdate soon.  Thursday, we met up with Sydney & her mom at clinic. Sydney had to be there for chemo every day this week. Her mom says Sydney actually likes chemo. I guess if you have to go through it, you might as well make the best of it.

He's also begun asking if we can bring extra snacks to share with the other kids. So, we've begun a "snack-swap" with Brenda, Sydney & Carly.  Brenda & Sydney have treatment before Caleb. Carly just started radiation this week and goes directly after Caleb.  All of these children are under 6 years old.  Please also keep these girls & their families in your prayers. They are all traveling different journeys than Caleb, but just as difficult.

I'm so pleased that he is back to his sharing, caring self again. It's so much fun watching him improve daily. We know our prayers are working. We can't wait to see what God is going to do next!

PT Evaluation & A Visit With Friends

Today has been a busy day for my little miracle man.  Up at 4:30am for meds & to get ready for radiation. Found out they have to do another scan Wednesday morning to fit him for another mask for treatment. He's still so swollen, it's difficult to breathe during treatment (mask #3).

We left there to head for his physical therapy (PT) evaluation in Plano.  By the time they finished all the parts of the standardized evaluation test (Peabody Developmental Gross Motor Scale), Caleb was unofficially testing out with the gross motor skills of a 3-yr old. We've got some work ahead of us to get him back on track. Hopefully, he'll find it fun.  They encouraged us to continue to keep him moving & let him play Wii Fit Plus as much as he wants because it will help strengthen his core.

We headed to lunch at McDonald's. When we left there, Caleb says, "Mommy, I want to go to school to see my friends."  So, we headed straight to the school.  He was so happy to see everyone and they were ecstatic to see him!  He told them all about what happens at radiation, showed them his "Beads of Courage" necklace and his accessed port site. We stayed for storytime and he participated with the class & even remembered the rules of the class. We visited for about an hour with a promise of coming again soon before heading home.

He played Wii for a bit, wrestled and rough-housed with his dad & his brother and finally crashed about 7:30pm.

He is such an extraordinary child and I couldn't be more proud of him. He's maintaining a positive attitude and the crying/whining has almost disappeared.  This is the little boy I'm used to seeing.

We're not out of the woods yet, so keep those prayers coming.

Angel

A Weekend of Smiles & Laughter

This past weekend has been full of smiles & laughter from everyone. Richard & I got some much-needed alone time thanks to his mom. G-ma got to spoil the kids all weekend, which made her and them happy. The boys loved having G-ma here.

Caleb's mood & attitude are still fabulous! He's even started taking his medication on his own without help from anyone else.

I had my MOPs (Mothers of Pre-schoolers) meeting today and Caleb was presented a blanket from a group called "Project Linus."  (Check their website for more information about the group -- http://www.projectlinus.org/index.html) The blanket is pirate-themed one side with an underwater motif on the back.

We still have a long road ahead of us, but we stand firm on the promises of God. He is still in control. We know that God will receive the glory for everything that happens.

Thanks for your continued prayers.

"Mommy, Is G-ma Still Bringing Donuts?"

I am so excited about G-ma coming to visit. Her sole purpose in coming is to give Richard & me a bit of a break this weekend. Of course, Caleb is even more excited. However, I'm not sure if he's more excited about her coming or her bringing donuts.  Caleb truly has a one-track mind sometimes. All he can think of about his grandma visiting is her bringing him donuts.  It's their "thing" that they do together. So, he's asked about 15 times this week if she's still bringing donuts. 

He's woke up laughing at 4:30am this morning. Went to radiation with no problem. Started playing Wii about 10am. Lunch at 1 & napped until 3:30pm. He's back on that silly Wii again! Normally, we limit him to about 30 minutes per day. But, right now it's helping him to strengthen the muscles in his hands & arms by playing, so we're using it as therapy. He thinks he's just playing.

His attitude and mood have been exceptional today. He's played & laughed for most of the day. It is the most delightful sound I've heard in a long time.

Everyone is commenting on how remarkably well he's doing at this stage -- the oncology team, the radiation oncologist, the anesthesiologist, the therapists & nurses.  We are so pleased with his progress. Caleb is truly my miracle child. We prayed for him for 4 years before he was even born and every day since.

We are so grateful to everyone for your prayers & support through this. We know that prayer changes things. Our biggest prayer has been that God be glorified through this circumstance. I have been overwhelmed with the number of people who tell me that I have strengthened their faith because of mine. I don't feel like I've done anything special. All I've been able to do is turn to God and let Him strengthen me. When I am down, He picks me up. When I am weak, He is strong. He is there for me whenever I need Him -- and that is always! God is the reason that I can walk through this without fear. I know He's in charge and will see us through.

May the love of God shine upon all of you. He loves you very much & so do I.
Angel

Losing weight

Caleb has lost 10 oz. Yeah, he has lost some weight.

A Remarkable Morning Already!

Caleb woke up in a very playful mood this morning. When we got to the radiation center, he got out of the van by himself, walked to the back of the van & said, "Daddy, I think I'll walk today. I want to strengthen my legs so I can go fishing." Caleb wanted to go fishing a few weeks ago and I told him as soon as he strengthens his legs, we will go.

He walked inside by himself, ran to the elevators, and happily greeted the staff. When it came time to go to his treatment room, he raced Dr. Murphy down the hall (4th day in a row), ran around the corner & was halfway in the treatment bed by the time Dr. Murphy got in the room. The look on the staff's faces was priceless! He scared them a bit by climbing into the bed with no one else in the room.

Looks like it's going to be a great day. I hope clinic goes this well too. Dr. Leger will be ecstatic about the progress.

Hopefully more to come from today.

Busy, But Fun Week

Sorry I haven't posted in a couple days. We've been enjoying time with a very active Caleb again. My fingers are sore from playing Wii so much with him. His attitude is improving daily, he's laughing & smiling more, & getting more mobile again.  He even raced Dr. Murphy down the hall for his radiation treatment a couple times this week.

Yesterday, Caleb received a MEGA-HUGE balloon/candy bouquet from a friend of ours. I'm not sure his smile could stretch any wider.  I took a couple pics of the bouquet before he tore into the candy/snacks in it. Will try to post them later this week.

We're looking forward to having Richard's mom in town for the weekend. Caleb's looking forward to her getting him some donuts. Richard & I are looking forward to some alone time. We may even get a few solid hours of sleep!

Tomorrow is clinic day, so please pray for a positive attitude from Caleb. He does not like going to clinic since they draw blood every week.

We're also beginning to research into Make-A-Wish for him. He wants to go to Walt Disney World. So, it's time to start filling out more paperwork.

***********
Heavenly Father, we know that You are in control of every situation around us. You are watching over us every moment of every day. You bless us with so many little things that we sometimes tend to overlook. Even when we have a rough day and vent, You are not surprised by it. You love us through it. Thank You for loving us unconditionally. Thank You for giving us the strength to endure what we must while drawing us closer to You. Thank You for healing Caleb.

Relaxing Sunday

Caleb had another great day today.  He played Wii for about 1.5 hours before saying, "Daddy, my thumbs are hurting from moving the controllers around." (Mine do that too!) He then watched a movie. Short nap after lunch. Dinner at a friend's house, where he played Lego Star Wars with his friends for another hour or so. Came home, showered, went to bed.

I'm so thankful he's feeling better. He's noticing the difference in himself as well. He told me he's getting his strength & energy back. He also said it's easier to walk now. I asked him if he was planning to race Dr. Murphy to the treatment room tomorrow and he said, "Maybe." That's better than the straight "No" we've been getting from him.

He even took his medicine today with no fussing! Things are going well.

We continue to put our faith, hope & trust in God. He is able to do what man can not do. His ways are not our ways, and His timing is always perfect. To God be the glory, honor, & praise every waking moment of my day.

I'm Loving the Good Days!

Another fabulous day today. Caleb actually slept until almost 8am this morning! He ate a normal-sized breakfast then watched cartoons for a while.

We went to his football team's end-of-year BBQ at the park around 1:30pm. Caleb stayed for an hour before he got too tired. He had a great time seeing all his football friends and coaches. We even got him to climb to the top of the play equipment & go down the slide once.  It took him a bit to do it, but even a little exercise is good right now.

We came home and took naps, then went out to dinner with my parents.  Caleb was excited about going to Red Lobster for dinner because we kept telling him how good the cheese biscuits are. After he had one, he was disappointed because he expected them to have more cheese in them than they did. He ate well and crashed in the van on the way home.

He told his dad before he fell asleep that he wasn't sure he wanted to go to church on Sunday, so we're going to let him sleep in and get some extra rest. He's had a HUGE weekend so far.

Time to set the clocks back and hit the sack. Good night everyone and thanks again for praying for us through this time.

Lord, Your grace is sufficient for us. In our weakness, You make us strong. You pick us up when we fall. You encourage us every step of the way. We thank and praise You for the healing in Caleb's body. You are our all in all!

Quick Note

It's 11pm & I'm ready for bed, but just wanted to jot a quick note.

Caleb had a fabulous day today. Radiation went well. He played Wii for over an hour with his grandpop (who "doesn't play video games"). Ate fairly normal portions of food. Enjoyed spending time with his grandparents.

Football Team end of year party on Saturday. Looking forward to seeing everyone there. Caleb is soooo ready for a cheeseburger!

Thank You, Lord, for all the improvements in Caleb's body, attitude, appetite, and mind. We love You, Lord!!!

Clinic Day Again

Our radiation appointment this morning was changed to 6:30am, which meant we had to be there by 6:15am. So, we would normally have gotten up at 4am to start getting ready. However, Caleb woke up at 2:15am and would not go back to sleep! He played with the kitten in the living room for about 45 minutes then asked if he could play Lego Star Wars on his computer. My first inclination was, "Of course not! It's not even daylight outside yet, go back to sleep, PLEASE!"  However, Richard whispered to remind me that playing that games requires that Caleb use both hands and all 10 fingers to play. We've been searching for ways to get him to use his right arm and hand, so I said, "Yes, just close your door and don't wake up your brother."  Richard got up to watch him play and said he played for about 30 minutes. That's MAJOR around here right now.

Rainy, Sleepy Day

Caleb had a really rough night last night. Several bad dreams and lots of tossing and turning. As such, he was pretty cranky today, but totally understandable.  He fussed about taking his meds at 4:30am, didn't want to go to treatment & fussed when he got home & realized he couldn't eat anything until 10:30am (snack time). That's because we've also cut back the amount of food he's getting since we've been lowering the steroid dose.

Blessed Beyond Measure

We were talking to some friends the other day about the difficulties I've been having getting around with Caleb by myself. He's still having a lot of trouble walking on his own -- lack of strength & muscle control, so he's wanting to be carried everywhere. I can NOT carry 50 extra pounds around for very long at all. So, I've been using Caden's umbrella stroller. It's a bit small for Caleb, but it's all we had.

No More Teachers, No More Books (for now)

It's official. Caleb is a kindergarten drop-out just like his mom.

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.

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!

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.

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. 

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 Newest Member of Our Family

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

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.

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.

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!

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.

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. 

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."

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. 

FB Posts 10.15.10

Friday, October 15, 2010 6:23 AM

Leaving for next procedure. Back in a few hours.  

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!!

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.‎

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.

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. 

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.