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.

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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.