Thursday, March 31, 2011

Correction to Caleb's Memorial Fund Information

I made an error posting the address for Caleb's Memorial Fund (I left a 7 out of the address). Here is the correct information:

You can make checks payable to: Children's Medical Center
(in the memo space put: "in memory of Caleb Huffines")

You can send donations to:
Children's Medical Center
Attn: Kathy Friend
2777 Stemmons Frwy Suite 700
Dallas, TX 75207


Tuesday, March 29, 2011

Caleb's Celebration of Life Service Planned

We would like to invite you to celebrate Caleb's life with us. Because Caleb LOVED rainbows, we are asking that everyone attend in bright, bold, vivid colors. Please do not wear all black.

We will be performing a balloon release at the end of the celebration in Caleb's honor.

Caleb's Celebration of Life service will be held on Saturday, April 2, 2011, at 4:00 p.m.

CrossRidge Church
1701 Walker Lane
Little Elm, TX 75068

Pastor Don Clowers from Grace Church USA will be officiating.

We are also requesting that NO flowers be sent. If you would like to honor Caleb in lieu of flowers, please make a donation to Children's Medical Center to help with research to find a cure so no other family has to endure what we've been through. A memorial fund has been set up in Caleb's name.

You can make checks payable to: Children's Medical Center
(in the memo space put: "in memory of Caleb Huffines")

You can send donations to:
Children's Medical Center
Attn: Kathy Friend
2777 Stemmons Frwy Suite 700
Dallas, TX 75207

Thank you for your continued prayers and support during this most difficult time. We know our Lord is holding us close, and we rejoice that Caleb is totally healed!

Richard, Angel & Caden

Sunday, March 27, 2011

Caleb Day Was Wonderful!

We just want to say "THANK YOU" to everyone who helped make Caleb Day possible. We were overwhelmed by the number of people who showed up to honor the memory of our sweet Caleb. The outpouring of support from our community proved to us that we made the right decision to move to Little Elm.

Our friends poured through our home expressing their sorrow at our loss & comforting us as best they could. They took care of everything for us & we were able to somewhat relax and not worry about cooking or cleaning anything. Special thanks to my MOPS group from Crossridge Church for coordinating food, our wonderful neighbors for serving our family in love, and our church family from Grace Church USA for being there for us whenever we needed them.

Saturday evening, we were treated to a professional soccer game. At half-time, we were presented with a framed jersey in Caleb's memory that had been autographed by the entire team. It was a bittersweet event. We were overjoyed at the gesture, yet saddened that Caleb was not able to be with us to enjoy it in person.

I believe he was watching us from his perch atop a rainbow in Heaven.

Thank you for everything.
Angel, Richard & Caden

Friday, March 25, 2011

Caleb's Adventure In Heaven Begins

On March 25, 2011, at 11:15 p.m, Caleb's journey on Earth ended & his adventure in Heaven began.  He left this world surrounded by family who love him very much.

I was holding him in my lap as he breathed his last breath. The pure peace that came over him as his whole body relaxed was astounding. We know he ran into Heaven totally healed & was greeted by people who love him.

This is the song we played directly after he passed.

Thank you for all your prayers. Please remember us in the days & weeks to come as we adjust to life without our sweet Caleb.

Angel & Richard

Not Going To Our House; But Preparing to Go HOME to Heaven

Caleb began having great difficulty breathing this morning around 2:30 a.m. His breathing is erratic & he's struggling for every breath. The doctors are saying that he may not make it through the day today.

We are singing his favorite praise & worship songs to him in hopes of easing his transition from this side of heaven to the other. We know that Jesus is waiting for him with arms wide open.

We will update when the time comes. Thank you for your prayers.

Richard & Angel

Update on Prayer Requests from 3/22/11 Post

These are the specific prayers requests from our post on 3/22/11 with updates.

1. It's NOT to late for our Lord to perform a miracle.
We still believe a miracle is possible & will not give up hope.

2. That our family is able to get here in time to say goodbye.
Our family has already begun to arrive. More will arrive en masse on Friday evening & Saturday morning.

3. That we are able to get Caleb's pain under control & keep it there.
We continue to work with the Pain Management Team at Children's to help make Caleb comfortable & pain-free. Adjustments are still being made.

4. That he is feeling well enough to be released from the hospital & wants to go home for the weekend.
We ARE leaving the hospital on Friday around mid-day to go home.

5. That he is feeling well enough to at least attend Caleb Day on Saturday.
We still hope he will be feeling well enough to attend Caleb Day. If he is not feeling up to throwing the first pitch, he has requested that his best friend, Braeden, be allowed to throw it for him.

6. That we continue to find the strength to endure what will come.
We stand in faith that God knows what he is doing. We don't understand it all, but we know that He is in control & has a plan for Caleb & for us as a family.

7. That we are able to have a conversation with Caleb about dying & Heaven without him becoming fearful.
We spoke with Caleb at length about dying & Heaven. We explained that the tumor is not getting better & appears to be growing again. We told him that because of the type of cancer it is, that it probably will end his life soon, unless God intervenes with a miracle. We shared with him that once he gets to Heaven, he will never have any more pain of any kind, he will be able to run, play, go fishing & anything else he wants to do. And most of all, he will be with Jesus forever. We told him that he will no longer be afraid because he will know so much love & peace in Heaven. He asked, "Why?"  We explained that because he is so smart, generous, loving & kind God realized that Caleb was needed more in Heaven than we need him here on Earth. We said that God must have a very special plan for Caleb to need him in Heaven so soon. Caleb said, "I don't want to die."  We answered that we don't want him to either, but God knows what He is doing & God's plan is always best. I told him that Heaven is the place I most want to be, but it's not my time to go yet -- it's Caleb's. I told him that I just know he will help Jesus decorate my mansion in purple with cats since those are my favorite things. And that Caleb would be the first to greet me when it is my time. I then mentioned some people that he knows that have gone before him and will be there to greet him so he won't be alone. We hugged & cried for a long time. I then crawled into the bed with him and held him for hours.

8. That we are able to tell Caleb about his biological siblings & them about him.
We had a talk with Caleb about his biological mom & siblings. He met with her & one of his sibling. When asked if he thought it was "pretty cool" he responded with a thumbs-up (our sign for yes). The entire discussion went well.

We have been informed that Caleb will get to ride to Caleb Day on a fire truck with a police escort! We will probably head right back to the house after Caleb's portion of the activities so he can reserve his strength.

We have also been invited to the FC Dallas Soccer game Saturday night. They would like to present Caleb with his own jersey autographed by the team at half-time! The game starts at 8pm at Pizza Hut Park near Frisco Square. We're not sure Caleb will be up to attending, but we will more than likely have a family member there to accept on his behalf.

We were also contacted by a local reporter who is doing an article on Caleb to put in the Little Elm Journal which will be published on Friday. News is spreading fast.


We are so grateful & humbled by the love & support that has been showered upon us during this difficult time. Please know that even though we aren't always able to respond to everyone, we do read every single comment here & on Facebook. Thank you for all your continued prayers for our family during this time.

Angel, Richard, Caleb, & Caden Huffines

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.

Tuesday, March 22, 2011

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 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.

Monday, March 14, 2011

Our Young Jedi Knight Prevails!

Well, after a week-long stay in the hospital, we are finally settling in at home again.  It's been a very busy couple of days and I'm just now getting a chance to write.

As you may already know, Wednesday Caleb had the NG tube inserted to help try to relieve the bowel obstruction. He pulled the tube out after about 4 hours. We had it reinserted on Thursday morning. He kept it in most of the day, but pulled it back out again after dinner. Since we were still waiting for a "poonami" to happen, it was reinserted Friday morning. This time he said that he would keep it in until they were ready to pull it out.  We were ready to try just about anything non-surgical to help get that blockage moving. Caleb had an appointment with the hospital's massage therapist & she performed a "poop massage," which is basically an intestinal massage designed to help move stuff through the intestines. Caleb says, "This is fun and important, too.!"  Such wisdom from such a small boy.

He was such a trooper through the entire ordeal. By late Friday night, his little bottom was blistered and bleeding so much he would scream every time we had to change him. We actually had to start giving him morphine for the pain on his bottom more often than the pain in his head!

He had a horrible night Friday night, because the tube was still inserted & they were still pushing meds into him to make him go even more. Even after over 2 litres of the medicine, the blockage still had not moved very much. He was awake every hour to be changed to help his bottom. They even made some special ointment called "ICU Butt Paste" to put on him. It was so hard to see him in so much pain and know we had to keep going.

Saturday morning he decided he was done with the tube & pulled it out again. We had an x-ray done to see if the blockage had moved any -- only a tad. We did discover that things were getting around the blockage. (I won't go into details other than to say that the doctors have been able to confirm that Jell-o has no blood in it.)

Saturday morning was also the "BIG DAY" with the fight against Darth Vader.  We had the following family members come in to witness the fight and spend some time with Caleb:  Grandma Kitty, Grandpop Andy, Uncle Andy, Aunt Deanna, cousin Jordyn, Aunt Darlene, G-ma Kay, Pawpaw Ron, Uncle Bernie, Aunt Jennifer, cousin Emmanuel, & Uncle David. The room was packed with family. We had so many people taking pictures & video of us that we felt like we were surrounded by the paparazzi! I actually heard someone ask who made the shirt I was wearing.

We went to the family lounge shortly after 10 a.m. The Star Wars gang arrived around 10:30 a.m. Caleb was so excited. He'd been practicing from his bed for 2 days prior.  After introductions & instructions, the fight began.   During the match we began chanting, "Team Caleb, Team Caleb!" Even the stormtroopers were chanting with us. Caleb fought valiantly and Vader was no match for him.  Caleb prevailed!! When the fight was over, Caleb was able to take pictures with everyone. They presented him with a medal for besting Darth Vader, a t-shirt, several autographed trading cards in a collector binder, a stuffed Yoda (that was bigger than the stuffed Vader he'd received earlier that morning [thanks, Aunt Karen]), a certificate making him an honorary Stormtrooper & some other items.

I'm still working on editing the video so it's short enough to post on YouTube. As soon as it's complete, I'll put it in a separate post,  but I've at least posted a group picture below for now.

He was exhausted by the time we left & went back to the room. While he was napping, we got word that we were being discharged! So, we packed everything up so that we could leave as soon as we spoke to the doctors. The entire family entourage helped pack things up & followed us home. We had a wonderful evening visiting with family & Caleb held out as long as he could.

Aunt Dar, Uncle Bernie, Aunt Jennifer & Emmanuel are staying with us for a few days to help out & we are so very thankful to have them here.

I have so much more to write, but don't want to take away from Saturday's fun, so I'll write the rest up in another post.

Love, hugs & kisses to all from us.

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.

Saturday, March 12, 2011

We're HOME!!!!

Just a quick note to let everyone know we were discharged from the hospital today after Caleb's big fight with Darth Vader.  CALEB WON!!!! Of course, we didn't really have any doubts about that.  I'll try to detail more later. I have a house full of family right now & am trying to get settled back in at the house.

Please remember to be praying for our 3 special requests:

1. Stopping the steroids should have minimal to no impact for the next week
2. We want his cholesterol & triglycerides to be less than 300 & sugar to be normal & clotting studies to be normal near the end of next week.
3. Once we start the new study, we want it to be effective.

Thanks for all your prayers. Pics & video of the big fight to follow soon (I hope).


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.

Thursday, March 10, 2011

Specific Prayer Request & No Additional Update Tonight

We can't go into details at this time, but we have a couple of specific prayer requests.

  1. Stopping the steroids should have minimal to no impact for the next week
  2. We want his cholesterol & triglycerides to be less than 300 & sugar to be normal & clotting studies to be normal near the end of next week.
  3. Once we start the new study, we want it to be effective.

We are under doctor's orders to go to sleep NOW! We'll update tomorrow.


Wednesday, March 9, 2011

MRI Results In -- Not What We Wanted To Hear

I've been struggling with writing this post all afternoon and evening. So, I'll just go through the day from beginning to end. Please bear with me.

Caleb was up several times last night to use the bathroom because he's still on IV fluids. None of us got much sleep. Around 4 a.m., Caleb started getting very agitated and tried to pull his port line out. Richard crawled into bed with him to get him calmed down. We slept until about 6:30 a.m., when the nurse came in. She said that the first MRI of the morning had cancelled and Caleb had been moved to the first slot. The technicians would be in our room to get him in about 20 minutes.

I got dressed and waited for them to come in. Since Caleb was asleep & we had to wake him up, he was NOT a happy camper. He fought, screamed & tried to wiggle himself out of the wheelchair several times. Once we got to Radiology, he calmed down. We got him ready for the MRI & they started at 7:42 a.m. Which was actually quite good news for them so Dr. Winick didn't have to let heads roll. He came directly back to the room when it was completed around 10:30 a.m. and ordered breakfast.

While he was eating breakfast, the floor manager comes to the room to stare at our ceiling (see yesterday's entry if you missed the story behind the ceiling). She said that we would be moving rooms. We told her that we were hoping to be discharged. She said we didn't have to move unless we had to stay another day.

After breakfast, Jennifer (our Child Life Specialist) came by and said that her boss had spoken to the Star Wars folks coming in this weekend to visit the kids. They heard that Caleb's wish for Make-A-Wish is to fight Darth Vader during Star Wars weekend at Disneyworld. They suggested that it might be possible for Caleb to have a "warm-up" fight with Darth Vader this weekend. They plan to be here about 10 a.m. Saturday morning. We will get to meet with them privately before they go the the playrooms. I am so excited for him.

The floor manager came back by about 1 p.m. & told us to pack up cause we were moving rooms. That's how we got notified we were staying another day.

I immediately thought that there was something on the MRI that was causing us to have to stay. We got settled in the new room & Richard took a walk around the hall. While he was gone, he met up with Dr. Winick. She explained that the x-ray they took last night of Caleb's bowels showed that he does have a blockage that has not moved since Friday when we were admitted. They decided the best course of action would be to do a nasal enema (for lack of a better term). He had to have a NG tube inserted through his nose into his stomach. They would then feed straight laxatives through the tube until he poops clear liquid. My, oh my, we are in for a long night.

About 2 p.m., Dr. Leger & Dr. Winick came by to discuss the results of the MRI.  It's not good news.  They are telling us that the tumor has gotten bigger, which means that radiation was not effective and it's growing. Because this is an aggressive growth tumor, we have now been given the official news that we have between a few weeks to a few months left with Caleb. They say that the tumor will continue to progress and Caleb's condition will continue to deteriorate.

We further discussed the other treatment options they gave us at clinic last week. After our discussions, we have decided to go forward with the Avastin. Of the two medicines we discussed, Avastin carries more risk but also has a better hope of success than the Timozolomide. The main concern with the Avastin is that one of the potential serious side affects of Avastin is bleeding in the brain. We've been told that the chance of bleeding is usually around 5-10%.  Because Caleb has already had issues with bleeding, his risk intensifies. They're not sure how much greater that risk is. If bleeding starts, it could be very serious, very quickly. He could start to go downhill within 30 minutes of taking the drug. It could also potentially take his life.

It was not an easy decision to make, but it is the one we feel is in Caleb's best interest. If we do absolutely nothing but make him comfortable, we watch him die a slow and excruciatingly painful death. If we do the Avastin & it does nothing, we're back where we were with doing nothing, but at least we tried. If we do the Avastin & it takes his life, we've saved him from a painful death. If we do the Avastin and it works like they hope, it could potentially save his life by destroying the tumor.

When Caleb saw us crying, he wanted to know why. We told him that his tumor is not getting better. We also said that we were going to try a new medication that we hoped would make him better. We don't know if it will work or not, but we would try. He said, "okay." We are scheduled to have the first treatment of Avastin on Thursday, March 10th -- exactly 5 months from diagnosis.

They left the room and we started calling family.

Around 8 p.m., a couple hours after they got the tube inserted and laxatives flowing, Caleb decided he didn't like the tube any longer and pulled it out! So we decided to wait until tomorrow morning to try again. That way, we can hopefully get some sleep before we start.

While we were waiting for clearance from the doctors to wait until tomorrow morning to start, Caleb asked for a glove Richard had blown up to resemble a chicken. He started sucking on one of the fingers of the glove. When I told him it looked like he was sucking on a pacifier, he asked if he could have a real pacifier. Of course, I told him yes. He said, "I want to get a cool pacifier." I told him that if he could make do with what they had her in the hospital that he could pick out his own when we got discharged from the hospital.

Within minutes of pulling the tube, he had his first accident. He had four or five accidents before he finally fell asleep with his new pacifier in his mouth. He's sleeping peacefully at the moment and doesn't appear to be in any pain, for which I am so thankful.

The news we've received is devastating. Our storm has intensified and is now like a Category 5 hurricane and an F5 tornado all mixed together. The path of devastation is great, but we know our God is, and always will be, the calm at the center of our storm. We turn to Him for comfort and know that He is there. He did not cause this to happen to us. But, we will use it to glorify Him, no matter the outcome.

Thank You, Lord, for allowing us the time that we have with Caleb. It is much shorter than we expected it to be, but we are honored that You chose us for this journey. Help us as we help him.


P.S. Don't forget to leave a comment so we know you're reading. Please remember to put your name if you're commenting as a guest. We're starting to read all your comments to Caleb so he knows how many people care about him and are praying for him.

Already Off to a Better Start

We are already off to a better start this morning with radiology.  Apparently the first appointment of the day has cancelled and Caleb's just been moved to the number 1 slot. They should be here within 20 minutes to take us downstairs to start his MRI.

They mentioned having us released today, but we're not sure yet. Caleb actually asked to go home yesterday for the first time. He fights & fusses to get admitted then after a few days he fights & fusses to go home. On Friday he told me that his wish would be to be admitted always. When I told him we were getting admitted, he said, "My wish came true already." So, hopefully his wish to go home will be granted as well (and he'll still be happy about it.

I'm praying the rest of our day goes smoothly as well.


P.S. Don't forget to leave a comment so we know you're reading. Please remember to put your name if you're commenting as a guest. We're starting to read all your comments to Caleb so he knows how many people care about him and are praying for him.

Tuesday, March 8, 2011

MRI Delayed; Doctor on the Warpath

It's been a bit of a rough day today. Caleb was supposedly scheduled for an MRI at noon. They took him off food at 6 a.m. & off drinks at 10 a.m. Around 12:45 p.m, we found out that his MRI was scheduled for 2 p.m. When we said, "what happened to his 10 a.m. appointment?" we were told that in the radiology area, that just meant he was MRI "ready" and his actual appointment was at 2 p.m. At 2:15 p.m, we still hadn't been called downstairs. We got another notice that an urgent case had come in and the MRI was being pushed further back. Around 4 p.m., we still hadn't been taken down. Dr. Leger said she'd spoken to someone who told her it would probably be around 7 or 8 p.m. before radiology was ready for us so we could reschedule for tomorrow morning if we wanted. Then Natalie, our nurse, said she had been told that Caleb was on the list for right after the urgent case being done.

That's when Dr. Winick went on the warpath.

I think she decided it was time to kick butt & take names.  By the time it was all said and done, we now have a scheduled appointment at 9:00 a.m. tomorrow morning, which supposedly means he will be on the table at 9 a.m. Dr. Winick said that at 9:15 a.m, she will be taking a walk -- not calling on the phone -- but taking a walk. If Caleb is not inside the machine, she will be livid. Then --- LOOK OUT! I'm so glad she's on our side.

We also showed her a problem we were having with dust build-up on the ceiling in our room. I thought she would blow a gasket. Her exact words, "This is unacceptable. I'm calling housekeeping & infection control right now." Since she left our room, she's been contacting housekeeping, engineering, infection control & called a meeting of all the night shift nurses in oncology to tell them, "Look Up!" They want to make sure this issue is not in any of the other rooms. If it had to happen, I'm kinda glad it happened to us since Caleb's counts are all okay. I'd hate to see it cause a problem for a child with a severely compromised immune system.

In other Caleb news, he spent every waking moment he could in the playroom again today. It definitely helped keep his mind off food. We've had so much fun playing Mario Kart that I think we're gonna have to get that game for him at home soon.

He's finally had dinner consisting of chicken nuggets, mac & cheese, 2 applesauce packets, a sugar cookie, grapes, 1/2 a popsicle & some apple juice. He's just fallen asleep and will probably be out for the night with the exception of potty breaks. I'm kinda hoping to get to bed before 10 p.m. tonight as well.

I want to send a thank-you to Bobbie, Annie & Haiden for making this great poster for Caleb:

I posted a song link late last night on my Facebook page that describes how I'm feeling lately. I feel as if I am in the midst of a Category 5 hurricane, yet, I will praise the Lord. My help comes from Him and none other. He's still on the throne & He knows what He's doing. Though my heart is torn, I will praise Him in my storm.

I hope this song speaks to you as much as it has me.


P.S. If you're a reader of the blog, please feel free to comment. If you're commenting as a guest be sure to sign your name at the the end of your comment. The comments you make help remind us that you're a part of this journey too.

Monday, March 7, 2011

Good Day & Another MRI

Caleb had a great day today. He finally got cleared to leave the room -- no more isolation! Every time the playroom was open, he was in it. Apparently, the nearly 24 hours of sleep he got helped. We crawled around on the floor (on a blanket) pretending to be a caterpillar. He played Wii, cars, colored & laughed.  He took 3 showers because the water felt so good.

We finally had a meeting with the doctors. Based on what Caleb's been experiencing the past couple weeks and what she noted today, we've scheduled an MRI for Tuesday at noon.  Hopefully, we'll know more after that so we have a better idea of what steps to take next.

I know it's not a lot of info right now, but it's been a very long & exhausting day for all of us. Please continue to keep us all in your prayers.


P.S. If you're a reader of the blog, please feel free to comment. If you're commenting as a guest be sure to sign your name at the the end of your comment. The comments you make help remind us that you're a part of this journey too. 

Sunday, March 6, 2011

It's Sunday, & We're Still Here

Good Sunday morning to everyone! I hope you have all been able to get your praise on today!  Here's where things stand so far today.

Caleb woke several times during the night to potty. Around 5 a.m., he woke up soaking wet. While in the process of taking him to potty & cleaning him up, he became very agitated -- more so than I can remember in a while. He was thrashing around, banging himself against the wall in the bathroom, trying to throw himself off the toilet & slamming his wrist/arm against the rails of the bed once we got him back in it.  He was also saying his head was at a 6 again, so we ordered some morphine for him. The nurse mentioned that he also had Ativan on order for help with the nausea & that it would calm him down by sedating him. Since I was concerned he might injure himself, I had her order it as well.

Since then, he has been so out of it that we can't understand anything he's saying. He's also very confused. He keeps asking where he is & saying that he needs to be admitted to the hospital. He doesn't remember that we've been here since Friday already.

Dr. Bowers just came by. He's concerned with Caleb's state of consciousness right now. We're not 100% certain it's just the Ativan causing this. He was extremely drowsy when we first started him on the VPA back in October. So, since just started that again, it could be it or a combination of the morphine, Ativan & VPA. We're stopping the Ativan & VPA for now & will give morphine only when requested by Caleb so we can get him back to a more coherent state. We discussed his constipation issue & decided that we'd give him a break today especially since he is so out of it. We'll go over everything again in the morning to see where things stand at that time & how he does for the rest of today.

Thank you for your continued prayers. We so appreciate them.


P.S. If you're a reader of the blog, please feel free to comment. If you're commenting as a guest be sure to sign your name at the the end of your comment. The comments you make help remind us that you're a part of this journey too. 

Saturday, March 5, 2011

Saturday in the hospital, I think it is the 5th of March...

First of all, how many of you are now humming the true song that my title is based on? ;)

Second, sorry for the late update. It seems that every time I picked up the computer to update, Caleb needed to potty or was throwing up again. Also, we were trying to wait until after we saw the docs before we updated & we were expecting them to come by much earlier than they actually did.

And now, today's story....

Well, today has been an interesting mix. Caleb woke up several times during the night to go to the bathroom, but never the kind we needed him to have to get off isolation. Everything that went his mouth this morning came right back out within 30 minutes, but he kept trying to eat. The poor child is so hungry, he doesn't even care if he's gonna throw up again, he just wants food.  

Finally around 10:30 a.m, he ate some saltine crackers & a few sips of apple juice (laced with Miralax). Over the course of 2 hours, he ate a total of 12 crackers & 4 oz of juice. He was able to keep it down for the majority of the day. We thought we were finally getting somewhere with this. 

Caleb's friend, Stacy, came by with her mom & dad (thanks Dawn & Pete). They played for a while & ate popsicles together. Caleb had a wonderful time & it was a welcome relief (for me) from watching the original Transformers series all day long.

The doctor made it to us around 1:30 p.m. this afternoon. We discussed what to do about Caleb's inability to defecate.  We believe the main reason is because of all the pain medication we've had him on since the beginning of January 2011. We decided to use an enema to help get things moving. They also added another medication that is supposed to counter-act the constipation caused by the morphine (sorry, Dar, I don't remember the name of it). 

He received his enema & within 5 minutes had produced a bowel movement. We finally got what they needed to run the test so he could get off isolation & go to the playroom. Then they tell us it could take up to 2 days to get the results back!!  This is the first time we've been admitted since October 2010 that Caleb has even wanted to leave the room & he can't yet. 

Caleb ordered pancakes, scrambled eggs & a fruit cup for dinner. Once it arrived around 6:30 p.m., he only ate a couple bites of each thing.  I was just starting the blog update at 8:30 p.m. & ready to say that he hadn't thrown up since 10 a.m., when dinner reappeared. :(

After he finished, we got him cleaned up again & he asked for some more morphine. The good news is that the morphine is helping.  As I mentioned yesterday, Caleb's been in constant pain for at least the last three months & not good about letting us know.  His pain level consistently stays around 4 out of 5 or 5 out of 5. For the past 2 days, he's been saying 6 out of 5. Within 15 minutes of having the morphine, we asked him what his pain level was and he said 2!  I honestly don't remember when he was last at a 2. We are, of course, continuing the morphine because we want to be able to stay on top of the pain instead of playing catch up. 

Thanks so much to all of you for your prayers. We know that prayer changes things & Caleb is proof of it. Please continue to pray that he is able to keep down oral food/drinks so we can continue to push the stool softeners so he can let his pipes flow the way they are meant to. If he can't, the next possible step is to place a tube down his nose into his abdomen/intestine area to push the stool softener directly through until he's flushed out. Not a pleasant prospect at all for him or us, so prayerfully it won't come to that.

I am hoping to update sooner tomorrow if I can. Thanks for understanding that it is sometimes a bit more difficult to be timely under these circumstances.

Oh! I almost forgot. Richard surprised me yesterday & brought my camera up so I was able to take a pic of the star machine in our room.  Here's what our ceiling looks like at night:


P.S. If you're a reader of the blog, please feel free to comment. If you're commenting as a guest be sure to sign your name at the the end of your comment. The comments you make help remind us that you're a part of this journey too. 

Thursday Clinic Visit & Friday Admission Updates

Yesterday was our weekly clinic visit.  We went in knowing we were going to be having discussions with the doctors about restarting the Valproic Acid (VPA) that we stopped in January because of the surgeries. We also wanted to discuss next steps.  We were able to restart the VPA & Caleb had his first dose last night at 8pm. We've also been told we don't need to be as hyper-vigilant as we had been with his dosing schedule for it. So, he gets it when we get up in the morning, mid-day & at bedtime now -- a welcome relief. We also discussed the options available with two other medications (names not being disclosed at this time). One carries greater risk than the other, but greater reward for success. We're still weighing options and praying about which route to take.

We're still having a hard time getting Caleb's symptoms/pain under control. Because the tumor is pressing on his optic nerve, he's having an increasingly difficult time with pain in his eyes, blurriness and double/triple vision. He's still having severe headaches, nausea/vomiting, stomach pain, muscle weakness, difficulty swallowing, drooling, and some other things going on. His pain level on a scale from 0-5 has been consistently 4 or 5 for the past 3 months. He doesn't always tell us when he's hurting because he says, "the pain medicine is nasty & doesn't work anyway, so why take it." We finally explained that if he doesn't tell us when he's hurting & how frequently/severely, that we can't tell the doctors & they can't increase it or give something stronger. So, they've added oral morphine to his list of meds. It's faster acting & can be given more frequently than the Lortab we've been using since the morphine doesn't have the "tylenol side effects" involved.  

Dr. Bowers also discussed the option of having Caleb placed on hospice care. Now, before you freak out, let me explain a little more. This does not mean that we are giving up or that he only has a few months left. Right now, the doctors honestly don't know how long he has. They are not ready to say he only has "xx" amount of months left. They want to continue to fight since Caleb's tumor "appears stable" at the moment. That's where Pediatric Hospice (PH) is different than adult hospice. We can take advantage of the nurse coming to the house to help with pain/symptom management with constant contact with the doctors without having to stop treatment. It's more like a home health nurse situation.

After discussing all this, we headed for the house. We got about 10 minutes from the house & Caleb starts vomiting all over himself & the van with no warning. I got him cleaned up & continued to the house. Thank goodness I always carry a full change of clothes for him when we go somewhere.  

We gave him some zofran & continued on with the evening. He threw up again after eating dinner then went to bed.  Woke up at 4 a.m. with a severe headache, which prompted a dose of Lortab. (We weren't able to get the morphine filled Thursday evening because none of the 6 pharmacies near us had it on hand.) Within 15 minutes after Richard left for work, Caleb started vomiting again. He was not able to keep any medicine, food or drink down. This continued through the morning. We called clinic & were advised to bring him in. We got to clinic & they accessed his port but were unable to get blood return. So, we had to have some medicine put in to dissolve any potential block in the port. He then went to have a stomach x-ray to make sure his bowels look okay.  Showed a lot of stool, but no obstruction.

Every time he attempted to eat or drink, he'd throw it back up within an hour of taking it.  We were finally admitted & transferred to a room around 5 p.m. this evening. I'd forgotten how nice & spacious the oncology rooms are compared to neurosurgery. This room is so big it echoes! It also has a really cool "nite-lite" in it that shines "stars" on the ceiling & walls. I wish I had my camera so I could take a picture of it. Pics on my cell don't do it justice at all.

Caleb attempted unsuccessfully to eat dinner. We've now been advised to let his stomach rest & not give anything by mouth for a couple hours. Then we'll start with ice chips & see how it goes from there with a slow progression to solids. In the meantime, he's still on IV fluids. All meds that can be given via IV are being done so. If it can't go via IV, it's on hold.

It's just after midnight now & he hasn't thrown up since the last time he tried to eat or drink (around 7:30pm). He's just had another dose of morphine to help with the pain. Hopefully he'll be able to keep food down when it's time to eat breakfast. 

We're currently under isolation precautions until he is able to produce a stool sample for some kind of testing. All this really means is that Caleb can't leave the room until they get his test results back. We're praying he's able to produce one since we're now on stronger pain medication. The stool softener we'd been giving him is an oral medication & he hasn't been able to keep it down either.

We're going to try to get some sleep now & will hopefully have an update around mid-morning Saturday.   


P.S. If you're a reader of the blog, please feel free to comment. If you're commenting as a guest be sure to sign your name at the the end of your comment. The comments you make help remind us that you're a part of this journey too.

Thank you for all your prayers.

Tuesday, March 1, 2011

Weekend was Great!!!

So this weekend was great.

It started off with mom coming up for the weekend to help take care of the boys while Angela and I got some much needed alone time. But before mom got here, we had some dear friends Richard & Christine Goodwin come over early on Friday so Angela & I can get a head start on the weekend. We were also blessed with some movie passes and went to go see Grace Card. Great movie.

Saturday was supposed to be our big day to do what we wanted to do. It didn't quite work out the way we planned it. Mom was extremely tired from waking up several times with Caleb. Who by the way slept in his bed Friday & Saturday. We're starting to put him back in his bed over the weekends as it's easier to go without sleep on the weekends. Then Angela got a severe migraine that lasted ALL day.

However, things worked out well on Saturday after all. Angela got well by the end of the day and mom got several naps too. Caden, Caleb, and I played hard all day. Caleb and I played on the Wii for several hours off and on (over 4+ hours). Caleb also got on the floor to play some too. He hasn't done that in several months. We played roll the ball with Caden for almost an hour. Then we broke out the Hot Wheels and played with those for quite some time. Then came out the Transformers for a while. All along playing with these on the floor.

After several hours of playing on the floor, Caleb started to get tired of being on the floor and wanted to sit on the couch. So he sat on the couch and we continued playing with the Transformers while watching the Old School cartoon Transformers. We had the Transformers fighting each other and played like that for quite some time.

Make-a-Wish came by on Saturday to help get Caleb's Wish granted. By the way when we first started talking to Caleb about Make-a-Wish, his first wish would be to see a rainbow. Something man can never give him and Gods promise of another day. Genesis 9:11-17. Caleb has settled on his Make-a-Wish to go to Disney World on Star Wars weekend so he can fight Darth Vader (and win). Hopefully this process will move along now.

Saturday was topped off by Caleb's Uncle David coming over with Miguel and Heidi, his cousins. Caleb and Caden played with their cousins for several hours during the visit. Caleb was laughing and hugging his cousins and was very happy to see them.

Sunday Angela and I got a chance to go to church. Something we love to do but haven't had a lot of opportunities the last several months to go together. It was great worshiping in the House of the Lord. We had a great time.

Sunday also kicked off another marathon of playing Wii with Caleb. We must have played for several hours before going to bed.

On Monday Caleb was experiencing several symptoms that after talking with his Oncology doctor, they wanted him in the ER to check on some things. The ER visit turned into an 8 hour stay as they had a trauma case come in and it took some time to get through that. All the scan came back to where there wasn't anything significant to admit him into the hospital. And yes, Caleb was upset because he wasn't admitted. He loves to stay at the hospital. On the upside of the ER visit, they did a CT scan. The scan showed the cyst inside tumor smaller after draining 12 CC's of fluid the last time we were in the ER.

Over all, Caleb has showed signs of having his normal spirit back. For over a week now he has been more playful, laughing, singing, sharing, manners, and also wanting to play with his brother more.

-Richard Huffines
A.K.A. Daddy

P.S. If you're a reader of the blog, please feel free to comment. If your commenting as guest be sure to sign your name at the the end of your comment. The comments you make help remind us that you're a part of this journey too.

Thank you for all your prayers.