Monday, December 27, 2010

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 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.

Sunday, December 19, 2010

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!

Tuesday, December 14, 2010


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!

Monday, December 13, 2010

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.

Saturday, December 11, 2010

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 The people there have sent Caleb & Caden what they call "Hope Boxes." Between 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: 

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

Thursday, December 2, 2010

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!

Sunday, November 28, 2010

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.

Thursday, November 25, 2010

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.

Tuesday, November 23, 2010

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.

Monday, November 22, 2010

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!!!!

Sunday, November 21, 2010

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.

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

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!

Friday, November 19, 2010

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!

Tuesday, November 16, 2010

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.


Monday, November 15, 2010

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 -- 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.

Friday, November 12, 2010

"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.

Thursday, November 11, 2010

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.

Wednesday, November 10, 2010

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.

Sunday, November 7, 2010

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.

Saturday, November 6, 2010

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!

Friday, November 5, 2010

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!!!

Thursday, November 4, 2010

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.

I got up about 3:30am to start getting ready for the day. I woke up in a severe amount of pain today so I knew I was going to be moving slowly and would need the extra time. Got breakfast & lunch fixed for Caleb since Thursday is also oncology clinic day. Fixed lunch for Caden for ELC (early learning center). Woke Caden up to change his diaper & discovered he was soaked from neck to toe, so he got a quick bath before we had to leave.

My wonderful neighbor, Nell, came over about 4:45am since she agreed to take Caden to ELC for us & pick him up if we're running late. I gave her instructions on what was needed while Richard finished getting Caleb & the truck ready for us to leave. Caleb fell asleep in the truck on the way to radiation. We got there and he was in a very playful, fun mood (which I've not seen since he started radiation)! He laughed & joked with the staff and snuggled under a warm blanket. We ALMOST got him to race Dr. Murphy down the hall. Caleb changed his mind at the last minute, but we blamed it on Dr. Murphy being late getting to the room. ;)  Once we got into the radiation room, Caleb asked if he could move himself to the other bed. He's never done that before! He's usually already sedated by the time they move him to that bed. It's custom fit for Caleb's body to help keep him from moving around. He crawled over to the other bed, stretched himself out, and declared, "I don't like this bumpy bed!" He sat up and tried to get off, so Dr. Murphy started giving him his "head-tingle sleepy medicine." He fell asleep sitting up.

As Caleb was coming out of sedation after radiation was over, he didn't remember that he'd already had treatment. He started yelling & hollering that he wanted to go to the room with the trees (there are trees painted on the ceiling of the treatment room).  Richard said he did the same thing yesterday.  He was a bit more disoriented than usual and even Dr. Murphy isn't quite sure why. When Caleb finally woke up enough, he ate a small breakfast -- PB&J, yogurt & 1/2 glass of milk.

We've been working on scaling back the amount of food he's eating. It seems to be working for now. Since we've been steadily reducing the steroids, he's not eating as much or as frequently. Now, if we could just him to start moving around more.

We left the treatment center & headed over to the oncology clinic for our 10:30am appointment there. Since we had almost 2 hours before our appointment, we went to the food court so Richard & I could grab a small bite to eat. We won't eat or drink in front of him when he can't have anything. Caleb added a cinnamon roll to his breakfast tally.

I headed up to Cardiology to find out the results of his Holster scan (the device he had to wear last Thursday night). It had been read, but the doctor hadn't signed-off on it yet, so they wouldn't tell me anything. We decided to let Dr. Leger find out for us & headed to clinic.

Caleb's weight is up to 51 lbs now. That's a 3 lb increase in 1 week. I'll really be glad when we're done with the steroids!  We met with Dr. Leger and she told us we could decrease the steroids again!! We're down to 1 milligram twice a day. He's still tolerating the reduction well. No increase in headaches, no vomiting, attitude improving, appetite slowly decreasing. She checked on the cardiology results and basically said, "no news is good news."  She said if there had been a problem, we'd have been notified earlier. Since they haven't called to schedule an earlier appointment than December, things must be okay for now. That's a huge relief.

Today also marked a new achievement -- we got off the hospital property before 1:00pm! Since next week's appointment isn't until 11:00am, I don't expect that will happen again.

We got home, ate lunch & Caleb took a nap. He's had dinner & is watching Transformers (the original cartoon series) with Richard & Caden right now.

This is definitely a wild roller-coaster ride.  My emotions run all over the place. The thing that keeps me going is knowing that God is in control. Somehow this will all work out. God has a purpose & a plan for our lives and we will walk in that plan.

Thank You, Lord, for keeping Your loving hands upon us during this time. It is by Your strength that we can continue through each day. You are the Rock we lean upon. You are the Fortress we run to for protection. You are our Shield when we're buffeted by negative reports all around us. You Are Our Healer!

Tuesday, November 2, 2010

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.

Once he had his snack & 10:30am meds, he wanted to take a nap and asked if one of us would nap with him. I gladly volunteered since I was awake through all the talking in his sleep as well as his awake time! We got into the bedroom and he says, "Mommy, I'm really tired and cranky."  I told him the best thing for that was sleep.  As I was straightening up the sheets, I was singing a worship song and he says to me, "Mommy, you're one of the bestest singers."  I love that child so much. Then we snuggled up and went to sleep.

We woke up at 12:30pm, just in time for meds & lunch. He balked at the meds again, but finally took them. Then, he decided to watch a little TV.

I went to pick up Caden at 2pm & Caleb was still awake when I got home at 2:30pm, so that was pretty good. We had afternoon snack at 3:30pm and he decided he wanted to take another nap. He was only in his room for about 15 minutes before he came back out again. He sat on the couch, Caden walked over to him & Caleb kicked him saying, "I don't want him near me." I told him he could go right back to his room and that kicking was totally unacceptable. I even maintained my temper!  He decided to straighten up and play with Caden instead. They played for about 30 minutes before Caleb started asking for dinner. That child has a one-track mind and it always seem stuck on food! I'll be so glad when we are done with the steroids (and so will my grocery bill)!

He ate a decent dinner, brushed his teeth & was in bed by 6pm. I'm hoping that, other than the 8:30pm med dosing, he'll sleep through until 4:30am so we can have an even better day tomorrow.

He loves his new "3-wheeler" (as he and his dad have dubbed it). I'm so glad about that. I was a little concerned what he was going to think about it.

I'm praying for a peaceful night for him, a better day tomorrow, and continued healing in his little body. Thank you all for your continued prayers as we go through this journey. Your love, support & prayers help sustain us.

Monday, November 1, 2010

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.

Well, tonight our friends, Josh & Amie, came over and surprised us with a jogging stroller that holds up to 75 pounds!

We truly are blessed beyond measure with wonderful friends and family.

Thank you, Josh & Amie. We love y'all!

Side view with canopy open

Front View

Large storage basket underneath!

Side view with canopy closed

No More Teachers, No More Books (for now)

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

When Caleb was in the hospital, we spoke with a school coordinator about how to figure out Caleb's school situation so he wouldn't fall too behind in his classes.  She mentioned that because of Caleb's diagnosis, we qualified for a home-bound learning program where a qualified educator would come to our home and teach Caleb if he couldn't attend classes. He was already one week behind when we got out of the hospital. The medications had him so sleepy & extremely moody all the time that we weren't sure if he could handle going to school even for 1/2 of the day. We talked it over, got the paperwork from the school, and decided that we probably would have him schooled at home for the time being. Well...

Once we had a chance to read over the paperwork, we were trying to figure out how to schedule it because of all the radiation treatments, doctor appointments, therapy appointments, his sleepiness, & the mood swings.  We felt it still might be too difficult for him right now.  And, I was trying to figure out how he was going to be able to incorporate Spanish into the program. He was accepted into a special dual-language program and was learning Spanish & English simultaneously. He had been doing well and really enjoyed learning Spanish. He was already interspersing Spanish into his everyday conversations with us at home.

We went to the school to see his class & had a great talk with the principal, assistant principal, & one of his teachers.  They told us that because Caleb just turned 5 in August we had so many more options available than we thought we did.

  • We could do the home-bound teaching, which might be a bit stressful for all of us right now.
  • We could temporarily withdraw him and re-enroll in January after radiation was done.
  • Since he has a summer birthday, we could withdraw him from school and restart next fall.
  • Kindergarten is not required in the State of Texas, so we'd have the option of starting him in either kindergarten or 1st grade.
  • When I expressed my concern about the dual-language program, they told us that they would save a spot for him in next year's program so he could return to the program.

They also told us that no matter what decision we made, we were always welcome to visit the campus whenever we wanted. He could still go visit with his classmates & teachers. He could even still check-out books from the library if he wanted! They have gone above and beyond what we could have expected. Hackberry Wranglers Rock!!!!!!

Richard and I discussed it a bit more and decided it would be in everyone's best interest to just withdraw him from school for now. We thought it might be too disruptive to re-enroll in January and hold up the rest of the class while he's playing catch-up. So, I went to the school today to officially withdraw him.

While I was there, they asked how they could help. I mentioned that the thing we need most lately is uninterrupted sleep. They offered to put together a schedule of people to come to the house to watch the kids so Richard & I could have some respite. Mr. Moffitt, the principal, is even checking into a program we would potentially qualify for that would enable someone to come clean the house for us once a month free of charge! They are also taking care of getting Caleb a yearbook. Have I mentioned that Hackberry Wranglers Rock?!?

And on a side note...

Thank you to everyone who helped Caleb reach his school fund-raising goal. He did earn the Nintendo DS, along with an iPod shuffle & a set of mp3 speakers!

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.