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!