Time to Catch Up (And in the hospital again)

I know I haven't done a good job this past couple weeks of keeping folks updated, but things have been so busy for a bit that I've just really been having a hard time figuring out what to say.

First, some good news.  I finally got some pictures of the "big fight" posted on Facebook. You can check them out here:   Caleb vs. Darth Vader  I still haven't had a chance to shorten my copy of the video to upload to YouTube. However, my brother did. Search for "Caleb Defeats Darth Vader" by RajunCajun54.

Next, this coming Saturday, March 26th, is the opening of baseball season for Little Elm. The LEAYSA (The Little Elm Area Youth Sports Association) is dedicating opening day to Caleb. If he is feeling up to it, he will get to throw out the first pitch of the season. All Team Caleb members are invited to attend. It is at Cottonwood Ballpark on Lobo Lane in Little Elm. Ceremonies begin at 11:00 a.m. Be there early if you can. If you're wearing your Team Caleb gear, you are welcome to join us on the field to show your support. We have been told that all players will be wearing yellow gold on their uniforms somewhere for the entire week in support of Caleb. Caleb's picture & a link to his blog are even featured on the home page of the Town of Little Elm website!  This is a wonderful outpouring of support from our own town & we are thrilled beyond belief.

Third, I received an email from the CEO of Propell (where our Team Caleb gear is being sold). I would like to share that email with all of you. This is a wonderful company & I thank God that, through a friend, we found them to host our stuff. We had never heard of this company prior our friend setting up the initial shop for us. God is so good!!

Subject: A note from the people who make the Team Caleb shirts

Dear Huffines Family,

(I'm not sure who will receive this but assume it's one of Caleb's parents.  If not, and Caleb is reading these, we just want you to know we're all thinking of you, and maybe you could send this along to your parents!)

I'm Ed Bernstein, the CEO of Propell, which is hosting your shop.

I hope you don't mind the intrusion, but I wanted you to know that we are very aware of your shop and very touched by Caleb's story, and how supportive all your friends and family have been.   You're all in our prayers too.   We're grateful you chose us to help, and will help you in any way we can.

A lot of our business is for schools, nonprofits and military, and we're proud to help them raise money.  But once in a while, we're moved, as individuals, by the story behind a shop, and yours is very much in that category.  When that happens, we try to reach out and see if we too can contribute.

So with that in mind, if you don't mind, I'd like to waive a portion of our fees, to increase the donation amount you will receive when we send out the profit-sharing checks.  You'll see this reflected in the next check.  

But mostly, we want to let you know there are real people here fulfilling these orders, and we are thinking of you and Caleb as we do.

Ed

__________
Ed Bernstein
Propell Corporation
305 San Anselmo Ave.  Suite 300
San Anselmo, CA 94960

Caleb had a wonderful time visiting with family this past week. It has been refreshing to have someone at the house to help us with him. Darlene, Bernie, & Jennifer -- we can't thank you enough for all you did. You are all very loved & we are grateful to you for the help.

Caleb had a very active weekend that kinda started Thursday morning. He woke up Thursday saying, "Daddy, I can walk." He then proceed to take a couple of steps with assistance from Daddy. He hadn't been able to do that for a couple weeks. He tried to take a step totally on his own as well. He also said that his vision wasn't blurry any longer.

We had our regularly scheduled clinic visit on Thursday. After a couple tries, we managed to have all of Caleb's numbers where they needed to be for him to start a new clinical trial. I can't go into all the details of it because it is a Phase 1 study. What I can say is that the oncology field is abuzz with the potential for this treatment. We got all the medication we were supposed to have to be able to start the study on Monday morning (3/21).

We mentioned to the doctors that Caleb hasn't been drinking much & we were concerned about his hydration levels. They put him on fluids at clinic then instructed us to run IV fluids at night at home to make sure he was staying hydrated.

Friday, Saturday & Sunday, Caleb wanted to spend the majority of each day outside in the sunshine. It was fabulous to see him playing catch with his friends & family. Saturday, we had more family come in to spend some time with us. Saturday night, we put Caleb to bed with the promise of doughnuts for breakfast on Sunday morning.

Sunday morning arrived & we got doughnuts for him, as promised. He didn't want to eat any & said, "Maybe later."  He then asked to go outside to play. We went outside & played catch in the front yard. He then spent some time playing with sidewalk chalk before going back in the shade to play more catch. He really wanted to practice so he'd be ready to throw out the first pitch on Saturday for what we're calling "Caleb Day." After a while longer, he was ready to go inside to take a nap. He slept for about 3 hours. When he woke up, we offered him something to eat & drink. He still refused. He was barely drinking anything & complained that his throat was hurting. The only thing he ate all day was a popsicle around 7:30 p.m. We were having trouble getting him to take his medications because his throat hurt so bad. We knew we had clinic on Monday morning, so we weren't overly concerned.

We put him to bed and stayed up talking to our neighbor, who had actually talked Caleb into eating the popsicle. We got ready to turn in for the night & I took "night duty" in Caleb's room with him. Since we got him a hospital-style bed on March 14th, we'd been able to get him to sleep in his room again. But, someone has to be in there with him. He doesn't like to be alone. Around 2 a.m., I was awakened by Caleb's labored breathing. He struggled to let us know what was going on. He managed to get the word "H O S P I T A L" out. We put him on some oxygen & it helped some. We called Dr. Leger, who was on call at the time, & told her what was going on. (Have I mentioned how much Caleb loves Dr. Leger?) She suggested we head into clinic earlier than originally planned to have him checked out. We also called the weekend hospice nurse to come check on him at the house to make sure we were doing all we could. He fell back asleep & slept until just before we left the house.

His breathing continued to be labored throughout most of the morning, so we kept him on the oxygen until we got to clinic (thanks to the portable oxygen unit). By this time, he was barely able to open his mouth to speak at all and we could not understand anything he was trying to say. We resorted to a "thumbs-up for yes" method so we could attempt to guess what he wanted.

Dr. Bowers came in and listened to our recount of the past few days. Based on Caleb's current physical & neurological instability, he is no longer eligible for the new phase 1 study we were supposed to start that morning. We discussed the option of Avastin again & were told that it would probably not do him any good to try at this point. So, we are basically out of treatment options. When we asked about how long we had, we were told around 4 days to 4 weeks & that the next 24 - 48 hours might tell us more.

Caleb is now in the "make him comfortable" stage. It was Caleb's decision, based on his 2am "hospital" request, to be admitted to the hospital again.

We are giving him nutrients, fluids & pain relief through his IV. He's been asleep for most of Monday. He has finally stopped fighting about having the oxygen mask directly on his face.

We have spoken to our families & advised them to come soon if they want to see him.  We are devastated at this latest development, but continue to lean on our Lord & Savior for comfort. He will sustain us through the time to come.

Please pray for the following:
1. It's NOT to late for our Lord to perform a miracle.
2. That our family is able to get here in time to say goodbye.
3. That we are able to get Caleb's pain under control & keep it there.
4. That he is feeling well enough to be released from the hospital & wants to go home for the weekend.
5. That he is feeling well enough to at least attend Caleb Day on Saturday.
6. That we continue to find the strength to endure what will come.
7. That we are able to have a conversation with Caleb about dying & Heaven without him becoming fearful.
8. That we are able to tell Caleb about his biological siblings & them about him.

Thank you for all your prayers for our family during this time.

P.S. Don't forget to leave a comment. Please remember to put your name & a location if possible. Caleb has been enjoying hearing how many people all over the world are praying for him.