October 10, 2010, our world was torn apart. Our then five year old son,
Caleb, was diagnosed with an inoperable brain tumor called Diffuse Intrinsic
Pontine Glioma (DIPG). We were told that 85% of the children with this
diagnosis would die within one year. We began a journey with cancer that would
last only 5 ½ months.
Shortly after diagnosis, a family member told us about the Battle for a Cure Foundation. Through our contact with Battle4aCure, we were asked if we
would like to participate in the Christmas Hope program. We wanted desperately
to have a “normal” Christmas, but we could barely make it through the day, much
less worry about Christmas gifts at the time, so we gladly said, “Okay.”
What happened next was nothing short of a miracle. Our family was “adopted”
by at least 6 different families for Christmas that year. We received packages
of toys every couple days for almost two weeks. There was one delivery that
still stands out in my mind. We were at home watching TV one evening when the
doorbell rang. When we opened the door, a large gift bag overflowing with gifts
was on the doorstep. We stepped outside to see a lady walking down the driveway
toward her vehicle. When she reached her vehicle, she turned back to us and
said “Merry Christmas,” then got in her vehicle and drove away. We were overwhelmed
with a sense of love and began crying as we walked back into the house.
That Christmas was overflowing with gifts and Caleb was able to be a
happy, excited child about Christmas one last time. And the most wonderful part
is that our younger son, Caden, was included in the entire gift giving process as
well.
Caleb died on March 25, 2011, at 11:45 p.m.
As December 2011 and our first Christmas without Caleb approached, we
were contacted by Battle4aCure once again. They wanted permission to send Caden
a box for Christmas to let him know that they were thinking about him and hadn’t
forgotten him. It was one of the kindest gestures that could have been given.
Caden’s favorite toy is the stuffed duck he received from that box. “Ducky” is
now a treasured member of our family. Caden sleeps with him every single night
and still carries him everywhere he possibly can.
Thank you so much for everything that you do Battle4aCure! As Caleb
would say, “We love you to infinity and beyond!”
With much love and gratitude,
The Huffines Family
Richard, Angela, Caden (and our sweet Caleb in Heaven)
***********************************
If this post has inspired you in any way, contact Battle4aCure.org to see how you can help. A "Hope Box" like the ones the boys received costs about $50. You can donate to this 501c(3) organization and bring a smile to a child battling cancer and that child's entire family.
From Oct 2010 - Mar 2011, this blog chronicled my son Caleb's journey with DIPG. Afterwards, it became an outlet for me to share how I was doing. Now, the blog takes a new direction. A new beginning. A new journey. The URL will remain the same, but the story is new.
Wednesday, January 9, 2013
A public thank you to: Battle4aCure.org
Saturday, January 5, 2013
December 2012 Update
December was another "fun-filled" month (well, mostly).
December 3rd - Caden's well-child visit. He's doing really well and everything is going okay, except for the tummy issues. I was still kinda freaking out about it all because I just wanted to know what's wrong with him.
December 4th - Christmas program for the Early Learning Center where I work & Caden goes to pre-school. About an hour before we are supposed to be at the church, Caden throws up again. Drat!! We still don't know what's causing the tummy issues, but I knew that's what it was related to so we went to the program anyway. The kids all did so well. As a teacher & a parent, I was so proud of all of them.
December 5th - Called Dr. Dave' first thing. She decided we needed to get an x-ray of his tummy, bloodwork and then head to her office right after. We went to the imaging center first and while waiting, I'm browsing the Internet & looking at a scrapbook cabinet that I want. I sighed really loud & Caden asked me why. I told him how much I really want to get this cabinet & that it's on sale, but I still can't get it.
Next stop was Dr. Dave'. At this point, she says that he is still as backed up as he was prior to the last cleanse. She's stumped as to why he's backing up so quickly & we decide to schedule him for an endoscopy & colonoscopy. Surgery is scheduled for December 14th. Hopefully, we'll finally get some answers.
December 9th - light dusting of snow! Not really even enough to stick to the ground, but I got a great shot of it on my beautiful December rose.
December 13th - One last cleanse before his procedures on the 14th. He was placed on clear liquids only after 10am. We had gone shopping the day before to pick out stuff he could eat and drink. I let him choose. Brought home lots of Jell-o and popsicles. Then when it was time for him to actually eat some of it, he felt so bad from all the pre-surgery stuff that he didn't want any of it. I thought, "I must have the only kid in the world who doesn't want to eat popsicles & Jell-o all day."
December 14th - We had to be at the surgery center by 7 am for Caden's procedures. He was not real happy having to wake up early and then being told he couldn't have anything to eat or drink. This was so reminiscent of radiation mornings with Caleb that it was all I could do to keep from crying in front of Caden. So many memories revisited in Caden's words. It was as if Caleb was there again.
We received the biopsy results on December 19th and updated by Facebook on the next day.
At bedtime that night, Richard was reading Caden the Bible story about Jesus raising Jairus' daughter from the grave. Caden asks, "When is Jesus going to make my brother alive again?" Richard and I both agree that sometimes it would be easier to skip some stories in the Bible. However, God continues to give us the grace, mercy & strength to keep going on.
Christmas Eve - We had driven to East Texas for the weekend. We attended the family Christmas Eve gathering as usual. It was quite a bit more somber & subdued because it was our first Christmas without Papa Wilson. His presence was truly missed. We drove home after the gathering and as we neared the south end of Dallas, we started driving through snow. It was absolutely beautiful. I love snow! Well, I guess I should qualify that a bit. I've lived in the south my entire life and can still count on both hands (with fingers left over) how many times I've been in snow. I love how it looks, but I don't like to be in it for long because I really dislike being cold! However, I still enjoyed watching it fall and prayed it would last through the night so Caden could see it since he was already asleep.
Christmas Day - The first White Christmas for Caden and me!
New Years Eve - We decided to let Caden watch Star Wars. He was so excited he could barely sit still. We started with Episode 4. As soon as Darth Vader entered, Caden jumped up and yelled, "There's Darth Vader. You bug face!" Caleb would have really gotten a kick out that. I can only imagine the Jedi battles the two of them would have had by now.
And, Caden actually stayed awake long enough to welcome in 2013.
===========
We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden
December 3rd - Caden's well-child visit. He's doing really well and everything is going okay, except for the tummy issues. I was still kinda freaking out about it all because I just wanted to know what's wrong with him.
December 4th - Christmas program for the Early Learning Center where I work & Caden goes to pre-school. About an hour before we are supposed to be at the church, Caden throws up again. Drat!! We still don't know what's causing the tummy issues, but I knew that's what it was related to so we went to the program anyway. The kids all did so well. As a teacher & a parent, I was so proud of all of them.
December 5th - Called Dr. Dave' first thing. She decided we needed to get an x-ray of his tummy, bloodwork and then head to her office right after. We went to the imaging center first and while waiting, I'm browsing the Internet & looking at a scrapbook cabinet that I want. I sighed really loud & Caden asked me why. I told him how much I really want to get this cabinet & that it's on sale, but I still can't get it.
"As I continue to drool over the WorkBox I want, Caden goes over to a stranger next to us and says, "My mom wants a WorkBox. Will you buy her one?"
I am beyond mortified and yet strangely proud of his confidence in asking."We left the imaging center and headed to the lab for bloodwork. As soon as we pulled up, he asked where we were. I told him we needed to have bloodwork done to help find out what's wrong with his tummy. He started screaming as soon as we walked in the door & didn't stop until it was over & we had left the building -- 30 minutes later!
Next stop was Dr. Dave'. At this point, she says that he is still as backed up as he was prior to the last cleanse. She's stumped as to why he's backing up so quickly & we decide to schedule him for an endoscopy & colonoscopy. Surgery is scheduled for December 14th. Hopefully, we'll finally get some answers.
December 9th - light dusting of snow! Not really even enough to stick to the ground, but I got a great shot of it on my beautiful December rose.
December 13th - One last cleanse before his procedures on the 14th. He was placed on clear liquids only after 10am. We had gone shopping the day before to pick out stuff he could eat and drink. I let him choose. Brought home lots of Jell-o and popsicles. Then when it was time for him to actually eat some of it, he felt so bad from all the pre-surgery stuff that he didn't want any of it. I thought, "I must have the only kid in the world who doesn't want to eat popsicles & Jell-o all day."
December 14th - We had to be at the surgery center by 7 am for Caden's procedures. He was not real happy having to wake up early and then being told he couldn't have anything to eat or drink. This was so reminiscent of radiation mornings with Caleb that it was all I could do to keep from crying in front of Caden. So many memories revisited in Caden's words. It was as if Caleb was there again.
"Mommy, I'm starving and I want a cheeseburger."
"No!! I don't want to put that bracelet on."At least we had already made the decision not to place his IV until he was sedated. I knew better than to try to fight that battle. But watching him fight the anesthesia mask was the hardest. It hurt to know how scared he was. I wanted to yank him off the table and just go home and cuddle him, but I knew we had to find out what was going on. Yet, I was terrified of the potential results. The procedure started about 8:15 am, and he was done about 30 minutes later. The endoscopy & colonscopy showed no obvious traces of anything wrong & Dr. Dave' confirmed that he was finally completely & totally "all cleaned out!" He took a little longer than we thought to wake up. When he did wake up, he was quite a bit cranky, but that was quite understandable considering what he'd been through.
We received the biopsy results on December 19th and updated by Facebook on the next day.
We got biopsy results back yesterday. No crohn's, ulcerative colitis, celiac, or anything like that. The lining in his stomach is red and irritated, apparently from a prior virus. Will take some time to heal. In the meantime, we have put him on Prevacid (to help it heal faster) and Gas-X to help with his extreme gas issues, in addition to the Miralax he was already on. We are also decreasing greasy/fried foods and limiting straw usage. (I didn't know you suck in more air when using a straw & he LOVES straws.)December 21st - tragedy strikes Newtown, CT. So many families will be struggling through Christmas without a family member because of one man's senseless act of violence.
His appetite is increasing again and no complaints of stomach pain today.
At bedtime that night, Richard was reading Caden the Bible story about Jesus raising Jairus' daughter from the grave. Caden asks, "When is Jesus going to make my brother alive again?" Richard and I both agree that sometimes it would be easier to skip some stories in the Bible. However, God continues to give us the grace, mercy & strength to keep going on.
Christmas Eve - We had driven to East Texas for the weekend. We attended the family Christmas Eve gathering as usual. It was quite a bit more somber & subdued because it was our first Christmas without Papa Wilson. His presence was truly missed. We drove home after the gathering and as we neared the south end of Dallas, we started driving through snow. It was absolutely beautiful. I love snow! Well, I guess I should qualify that a bit. I've lived in the south my entire life and can still count on both hands (with fingers left over) how many times I've been in snow. I love how it looks, but I don't like to be in it for long because I really dislike being cold! However, I still enjoyed watching it fall and prayed it would last through the night so Caden could see it since he was already asleep.
Christmas Day - The first White Christmas for Caden and me!
New Years Eve - We decided to let Caden watch Star Wars. He was so excited he could barely sit still. We started with Episode 4. As soon as Darth Vader entered, Caden jumped up and yelled, "There's Darth Vader. You bug face!" Caleb would have really gotten a kick out that. I can only imagine the Jedi battles the two of them would have had by now.
And, Caden actually stayed awake long enough to welcome in 2013.
===========
We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden
Sunday, December 2, 2012
November 2012 Update
Well, after a bit of a disappointing October, I was looking forward to a month of "Thankfulness" for November. I was finally migraine free after 7 straight days. That was plenty to be thankful about.
We made plans to travel to East Texas to say a final "goodbye" to Richard's grandfather (Papa). His health had been declining and we figured we probably wouldn't have much time left with him. There was a carnival in town the same weekend so we also got to take Caden there.
Since it was the first time in over a week that I was feeling well, I took full advantage of it. I talked my father-in-law's sister into riding the rides with me. The first one we chose was the type of ride that swings from side-to-side going higher each time until eventually you spin all the way around but not upside-down. We were locked in place by an over-the-head harness. Once it got going, Donna was so freaked out by it that she was screaming, "Sweet, Jesus, save me! Get me down from here! We're gonna die! Oh, Lord, help meeeeeee!" I couldn't help myself - I laughed. And the more she screamed, the more I laughed. She had me laughing so hard I had tears running down my face and my sides hurt. Man, did I need that.

piZap.com fun and easy photo editing
While we were there, Caden and I both had the opportunity to learn how to shoot a gun. Caden was excited; I was petrified. I don't like guns. I'm not against them, I just don't like them. An untrained (or unstable) person has the potential to cause great harm with a gun (or any weapon for that matter).
I also managed to catch some great shots of Caden rolling down a hill that I used to make a scrapbook page.
We still had not figured out what was going on with Caden's tummy, so by November 7th, we were taking more x-rays and seeing the gastroenterologist again. I'm thankful for caring doctors. After all we went through with Caleb, I have a tendency to go a little over-cautious when it comes to Caden. The doctors we have seen all understand my fears and concerns, are helping to calm me down, and are not blowing me off as a paranoid mom. They are working with me to find out what's wrong with Caden's tummy issues. I love them all the more because of it. We had to do another weekend "cleanse" on him starting on the 9th. He handled it all so very well.
On November 12th, Richard's Papa joined Caleb in Heaven. Because of the salvation of Jesus Christ, we are assured that one day we will see him again. Until then, I know Caleb has one more loving relative to take care of him until we can get there, too.
We went to Louisiana to spend time with family & friends for Thanksgiving and Caden's birthday. We opted for a Star Wars theme for Caden since he's into it just as much as Caleb was (if not more so). My SIL was in charger of the cake since we were driving in. I LOVE how she used a picture of us and her family from pics we took prior to Caleb's fight with Darth Vader as the picture on the cake. It helped us all to remember him during a joyous occasion. After opening all his gifts, he and several of the kids (including the grown kind) had a massive Light Saber battle in the front yard. When all was said and done, only 1 of the 6+ swords was damaged in the melee & no injuries were reported!

piZap.com fun and easy photo editing
My favorite part of the month was having a short family photo session. Our nephew's girlfriend is a budding photographer & agreed to take some shots for us while we were in Louisiana. I love the shots she got of us & can't wait to have her take more the next time we are down there (or if I can convince her to come to us)!

piZap.com fun and easy photo editing
Stay tuned for more updates...
===========
We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden
We made plans to travel to East Texas to say a final "goodbye" to Richard's grandfather (Papa). His health had been declining and we figured we probably wouldn't have much time left with him. There was a carnival in town the same weekend so we also got to take Caden there.
Since it was the first time in over a week that I was feeling well, I took full advantage of it. I talked my father-in-law's sister into riding the rides with me. The first one we chose was the type of ride that swings from side-to-side going higher each time until eventually you spin all the way around but not upside-down. We were locked in place by an over-the-head harness. Once it got going, Donna was so freaked out by it that she was screaming, "Sweet, Jesus, save me! Get me down from here! We're gonna die! Oh, Lord, help meeeeeee!" I couldn't help myself - I laughed. And the more she screamed, the more I laughed. She had me laughing so hard I had tears running down my face and my sides hurt. Man, did I need that.
piZap.com fun and easy photo editing
While we were there, Caden and I both had the opportunity to learn how to shoot a gun. Caden was excited; I was petrified. I don't like guns. I'm not against them, I just don't like them. An untrained (or unstable) person has the potential to cause great harm with a gun (or any weapon for that matter).
I also managed to catch some great shots of Caden rolling down a hill that I used to make a scrapbook page.
We still had not figured out what was going on with Caden's tummy, so by November 7th, we were taking more x-rays and seeing the gastroenterologist again. I'm thankful for caring doctors. After all we went through with Caleb, I have a tendency to go a little over-cautious when it comes to Caden. The doctors we have seen all understand my fears and concerns, are helping to calm me down, and are not blowing me off as a paranoid mom. They are working with me to find out what's wrong with Caden's tummy issues. I love them all the more because of it. We had to do another weekend "cleanse" on him starting on the 9th. He handled it all so very well.
On November 12th, Richard's Papa joined Caleb in Heaven. Because of the salvation of Jesus Christ, we are assured that one day we will see him again. Until then, I know Caleb has one more loving relative to take care of him until we can get there, too.
We went to Louisiana to spend time with family & friends for Thanksgiving and Caden's birthday. We opted for a Star Wars theme for Caden since he's into it just as much as Caleb was (if not more so). My SIL was in charger of the cake since we were driving in. I LOVE how she used a picture of us and her family from pics we took prior to Caleb's fight with Darth Vader as the picture on the cake. It helped us all to remember him during a joyous occasion. After opening all his gifts, he and several of the kids (including the grown kind) had a massive Light Saber battle in the front yard. When all was said and done, only 1 of the 6+ swords was damaged in the melee & no injuries were reported!
piZap.com fun and easy photo editing
My favorite part of the month was having a short family photo session. Our nephew's girlfriend is a budding photographer & agreed to take some shots for us while we were in Louisiana. I love the shots she got of us & can't wait to have her take more the next time we are down there (or if I can convince her to come to us)!
piZap.com fun and easy photo editing
Stay tuned for more updates...
===========
We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden
Monday, November 5, 2012
October 2012 Update
October just did not seem to be a good month for us this year.
Caden started having tummy troubles over the summer. It was kinda sporadic so we didn't think too much about it. Well, in October the tummy troubles were on a daily basis. He would say his stomach hurt and always point to the same spot. Every few days, he would throw up while eating. I took him to the doctor, x-rays were taken, poop was revealed on x-rays. Started adding 1/2 capful Miralax to daily medicine regimen to help move things along. Dr. P. also referred us to a gastroenterologist since this had been going on for a couple months. (More on that as we go along.)
He had also started complaining about his eyes hurting & headaches again. So we took him to ophthalmologist again. His astigmatism had rotated by 90 degrees. A new prescription for lenses was written and we were back out the door. We knew the insurance wouldn't cover another set of lenses in the same year, so we were expecting to pay it all out of pocket. However, when we went to get his new lenses, we found out that we were allowed one change of prescription on the lenses within 6 months of getting the original prescription. Praise the Lord, we made that date by less than 5 days!! So, we didn't have to pay anything for the new lenses. When we picked up the new lenses, Caden put on the glasses and said, "Wow, Mom! I can see perfectly now!"
We saw the gastroenterologist (Dr. D.) for the first time on October 17th. We absolutely LOVE her! After she reviewed the x-ray & checked him over, she said he definitely had a lot of poop still there & had a lot of gas as well. She asked us to do a "cleanse" over the weekend then increase the Miralax to 1 cap per day to see if that would help keep him from throwing up & get things moving. The cleanse would involve him drinking 64 ounces of liquid with 18 caps of Miralax. She wanted us to call her on the 22nd to let her know how he was doing. We started his cleanse the morning of the 19th.
I also had my first jury duty summons in 10 years! I was so excited and hopeful that I would get picked to serve that I pre-arranged a sub for my class & arranged for my mom to come visit for the entire week so I wouldn't have any reason not to be able to serve. I have always been fascinated with our legal system and would embrace the opportunity to perform my civic duty. I made it through the initial selection phase and discovered it would be an Aggravated Assault with a Deadly Weapon case. Excitement continued to build. However, I was not chosen for the final selection. I was bummed I wouldn't be able to serve, yet happy that I could focus on Caden and enjoy my time with my pre-schoolers that week after all (yeah, right!).
Thursday afternoon (Oct. 25th) I came home from work with a headache. I'm so glad that Mom had decided to stay until Halloween was over. I was able to lay down in bed for a couple hours while she watched Caden and fixed dinner. Woke up feeling better on Friday morning, but by that afternoon a migraine hit. Again, I took some medicine and went to bed. I woke up feeling a bit better on Saturday morning so we left the house for breakfast at I-Hop & a trip to the Ft. Worth Zoo. That migraine came back with a vengeance over breakfast. I kept thinking that it would pass & we wouldn't have to cancel our trip to the zoo. Within 15 minutes of it starting, I thought I was going to pass out from the pain. We left breakfast and headed to the emergency room instead of the Zoo. Because this one was so much more severe than my normal migraines they ordered a CT scan. I vaguely remember putting my jacket over my head as I was wheeled to Radiology and wondering when I would be able to get some medicine that would actually make the pain stop. They had given me a bunch of stuff, but nothing was working yet. After a couple hours, they finally got enough meds in me to take the pain level down to a 3 then sent me home. I slept most of the day.
Sunday, 10/28 - still had it. Had to leave church early.
Monday, 10/29 - still had it and went back to the ER.
Tuesday, 10/30 - still had it. Missed work. Managed to get an appointment with neurologist on 10/31
Wednesday, 10/31 - still had it. ("Migraine, migraine, kindly remove the stabbing pain from my eye, then go away and take all of your icky friends like nausea, dizziness, photo-sensitivity, loud noises, tinnitus, auras, etc., with you. You have out-stayed your welcome. Isn't 6 days in a row enough already?!?!?!?! You are not any fun, and I want you gone!!! Oh, and don't ever come back either!") Went to neurologist. Diagnosis: Rebound Headaches. Treatment: Told to rest with minimal activity, preventive medicine prescribed and no more pain meds. (WHAT?!?!) Missed going to the CRC annual Trunk or Treat.
Thursday, 11/1 - late in the afternoon, FINALLY GONE!!!
I know it seems that October was just a jumble of bad health, but there were many good moments as well.
We were able to make it to the Little Elm Fire Department's annual Open House. It was our first time being at the new station since it was built. My BIL, David, and his two kids went with us and we had a good time. It was cold, and windy, but it was dry! We made sure Caden wore his firefighter outfit & got some great shots of him. Caden LOVED sitting behind the wheel of the firetruck and putting out a "fire."
In the post I made about More Than I Can Handle, I quoted from two different books. The author of one of the books actually commented on the blog the next day! That was pretty cool, but I'm still kinda wondering how he found my little blog.
Late in the afternoon on the 27th, we went to a local pumpkin patch. You can definitely tell I was not feeling well in the pics we took. Well, at least I can tell. I was still feeling the effects of the migraine and all the pain meds they had given me at the ER that morning.
The best moment of my month came on a day that I didn't expect would be very happy - October 10th. The 2-yr anniversary of diagnosis. Caden and I were so blessed to be able to spend a few hours with D & her daughter. The kids had a blast playing together while D and I had a chance to catch up. We hadn't seen each other in person since Caleb's Celebration of Life service. Social media is great for being updated on life, but there is something about a face-to-face conversation that is so much more worthwhile. And, of course, virtual hugs just don't cut it most of the time, so there's always the joy of a hug with skin on.
That's enough "fun and excitement" for the month. Stay tuned for more in November.
===========
We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden
Caden started having tummy troubles over the summer. It was kinda sporadic so we didn't think too much about it. Well, in October the tummy troubles were on a daily basis. He would say his stomach hurt and always point to the same spot. Every few days, he would throw up while eating. I took him to the doctor, x-rays were taken, poop was revealed on x-rays. Started adding 1/2 capful Miralax to daily medicine regimen to help move things along. Dr. P. also referred us to a gastroenterologist since this had been going on for a couple months. (More on that as we go along.)
He had also started complaining about his eyes hurting & headaches again. So we took him to ophthalmologist again. His astigmatism had rotated by 90 degrees. A new prescription for lenses was written and we were back out the door. We knew the insurance wouldn't cover another set of lenses in the same year, so we were expecting to pay it all out of pocket. However, when we went to get his new lenses, we found out that we were allowed one change of prescription on the lenses within 6 months of getting the original prescription. Praise the Lord, we made that date by less than 5 days!! So, we didn't have to pay anything for the new lenses. When we picked up the new lenses, Caden put on the glasses and said, "Wow, Mom! I can see perfectly now!"
We saw the gastroenterologist (Dr. D.) for the first time on October 17th. We absolutely LOVE her! After she reviewed the x-ray & checked him over, she said he definitely had a lot of poop still there & had a lot of gas as well. She asked us to do a "cleanse" over the weekend then increase the Miralax to 1 cap per day to see if that would help keep him from throwing up & get things moving. The cleanse would involve him drinking 64 ounces of liquid with 18 caps of Miralax. She wanted us to call her on the 22nd to let her know how he was doing. We started his cleanse the morning of the 19th.
"Poor Caden has been having some tummy issues lately, so I took him to a specialist on Wednesday. She gave us instructions to "clean him out." We won't be going anywhere today or tomorrow. The poo-nami has arrived! Hoping this helps with the issues and we don't have to do anything additional. Proposed next steps don't sound pleasant."That night he threw up again.
I called her on the 22nd during a break from jury duty (see details below). She said he had probably thrown up from the sheer volume of liquid consumed that day. We were advised to continue the 1 capful of Miralax per day and follow-up with her in 2 weeks. (To be continued in November.)"It's very frustrating (and frightening) when you know that something is wrong with your child, you have no idea what, and you have to wait until Monday to talk to the doctor. Makes for a very long weekend. Trying not to let myself imagine the worst. Leaning on my Savior for peace, strength and comfort."
I also had my first jury duty summons in 10 years! I was so excited and hopeful that I would get picked to serve that I pre-arranged a sub for my class & arranged for my mom to come visit for the entire week so I wouldn't have any reason not to be able to serve. I have always been fascinated with our legal system and would embrace the opportunity to perform my civic duty. I made it through the initial selection phase and discovered it would be an Aggravated Assault with a Deadly Weapon case. Excitement continued to build. However, I was not chosen for the final selection. I was bummed I wouldn't be able to serve, yet happy that I could focus on Caden and enjoy my time with my pre-schoolers that week after all (yeah, right!).
Thursday afternoon (Oct. 25th) I came home from work with a headache. I'm so glad that Mom had decided to stay until Halloween was over. I was able to lay down in bed for a couple hours while she watched Caden and fixed dinner. Woke up feeling better on Friday morning, but by that afternoon a migraine hit. Again, I took some medicine and went to bed. I woke up feeling a bit better on Saturday morning so we left the house for breakfast at I-Hop & a trip to the Ft. Worth Zoo. That migraine came back with a vengeance over breakfast. I kept thinking that it would pass & we wouldn't have to cancel our trip to the zoo. Within 15 minutes of it starting, I thought I was going to pass out from the pain. We left breakfast and headed to the emergency room instead of the Zoo. Because this one was so much more severe than my normal migraines they ordered a CT scan. I vaguely remember putting my jacket over my head as I was wheeled to Radiology and wondering when I would be able to get some medicine that would actually make the pain stop. They had given me a bunch of stuff, but nothing was working yet. After a couple hours, they finally got enough meds in me to take the pain level down to a 3 then sent me home. I slept most of the day.
Sunday, 10/28 - still had it. Had to leave church early.
Monday, 10/29 - still had it and went back to the ER.
Tuesday, 10/30 - still had it. Missed work. Managed to get an appointment with neurologist on 10/31
Wednesday, 10/31 - still had it. ("Migraine, migraine, kindly remove the stabbing pain from my eye, then go away and take all of your icky friends like nausea, dizziness, photo-sensitivity, loud noises, tinnitus, auras, etc., with you. You have out-stayed your welcome. Isn't 6 days in a row enough already?!?!?!?! You are not any fun, and I want you gone!!! Oh, and don't ever come back either!") Went to neurologist. Diagnosis: Rebound Headaches. Treatment: Told to rest with minimal activity, preventive medicine prescribed and no more pain meds. (WHAT?!?!) Missed going to the CRC annual Trunk or Treat.
Thursday, 11/1 - late in the afternoon, FINALLY GONE!!!
I know it seems that October was just a jumble of bad health, but there were many good moments as well.
We were able to make it to the Little Elm Fire Department's annual Open House. It was our first time being at the new station since it was built. My BIL, David, and his two kids went with us and we had a good time. It was cold, and windy, but it was dry! We made sure Caden wore his firefighter outfit & got some great shots of him. Caden LOVED sitting behind the wheel of the firetruck and putting out a "fire."
In the post I made about More Than I Can Handle, I quoted from two different books. The author of one of the books actually commented on the blog the next day! That was pretty cool, but I'm still kinda wondering how he found my little blog.
Late in the afternoon on the 27th, we went to a local pumpkin patch. You can definitely tell I was not feeling well in the pics we took. Well, at least I can tell. I was still feeling the effects of the migraine and all the pain meds they had given me at the ER that morning.
The best moment of my month came on a day that I didn't expect would be very happy - October 10th. The 2-yr anniversary of diagnosis. Caden and I were so blessed to be able to spend a few hours with D & her daughter. The kids had a blast playing together while D and I had a chance to catch up. We hadn't seen each other in person since Caleb's Celebration of Life service. Social media is great for being updated on life, but there is something about a face-to-face conversation that is so much more worthwhile. And, of course, virtual hugs just don't cut it most of the time, so there's always the joy of a hug with skin on.
That's enough "fun and excitement" for the month. Stay tuned for more in November.
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We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden
Sunday, October 21, 2012
The REAL MIRACLE
Richard posted the following on Facebook earlier today and I thought I would add it here.
"The Battle Is Not Yours"
Clint Brown
The battle is not yours, God said it's mine
The battle is not yours, God said it's mine
If you'll set stand and see
He'll show up on time
The battle is not yours, God said it's mine.
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We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden
What if the REAL MIRACLE was that Caleb was my son and I got to spend 5 1/2 years with him?The song Richard is talking about is called "The Battle Is Not Yours" by Clint Brown and is available on iTunes as part of the "It's Time to Dance" CD.
Just read a friends post which mentioned Caleb and started me thinking about him. Now I know this friend won't do this, but don't ever say to me "I'm sorry I made you hurt... Or think about him and cry....."
You see, to me the pain I feel is the love I have for Caleb. I am better to have loved and still love him than to have not ever known that feeling.
Which brings me back to my question. What if the REAL MIRACLE was that Caleb was my son and I got to spend 5 1/2 years with him?
Most of you have known Angela and/or I for over 7years. Which BTW will be before Caleb was born. We've prayed for 5-7 years for the chance to have a child.
We finally decided to adopt and by such miracle we met Caleb's birth mother. Of whom were still friends with today. Due to some medical condition with Angela. Shortly before Caleb was born she had to have a procedure which prohibited us from ever birthing a child. A few years down the road, we adopted again. Welcome to our world Caden.
So, I know I'm leaving a big portion of the story untold. But what if Caleb was never born? Or something happened during the pregnancy? Or? Or? Or? Or?
You see, when Caleb passed away we decided not to live the rest of OUR lives asking... WHY? But giving God the glory for providing us strength, courage, a great church & great friends. All of which helped us get through a very tuff battle.
Which reminds me of a great song we use to sing a Grace Church USA. "The Battle is not Mine, God Said it's His" Sure wish I had a copy of that song to listen to every once and a while.
What if the REAL MIRACLE was that Caleb was my son and I got to spend 5 1/2 years with him? Thank you Jesus.
"The Battle Is Not Yours"
Clint Brown
The battle is not yours, God said it's mine
The battle is not yours, God said it's mine
If you'll set stand and see
He'll show up on time
The battle is not yours, God said it's mine.
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We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden
Wednesday, October 17, 2012
More Than I Can Handle?
Recently, several friends and family members have encountered tragedy of one kind or another -- death of a child/parent/spouse, a relationship ripped apart, loss of a job and/or home, etc. One of the first things I typically see is someone telling them something we were repeatedly told throughout our journey, "Remember, God will never give you more than you can handle" (or some variation of it). And, lest anyone think otherwise, I've been guilty of saying it to others in the past. Until we went through the most severe trial/tragedy of our lives with Caleb's diagnosis, battle, and death. When I felt I had nothing to hold onto, I began scouring the Scriptures for God's promises to help. I couldn't find anywhere in Scripture where God promised never to give me more than I can handle. I found promises that I would have trials and tribulations. And I found promises that God would be with me in those trials. I think the verse people are actually trying to use is:
Now, were there times during that battle that I wanted to give up, just walk away from everyone and everything? Yes. I was able to bear the temptation of giving up because Jesus sustained me with the ability to overcome with me continuing to rely on Him for comfort instead of shutting myself off from the world.
I read this introduction to a book I got today called, Hope in the Midst of Tragedy, by Shelley Hitz.
So, will God give me more than I can handle? Absolutely! And I know that He will be right there with me in the midst of it as I continue to worship and glorify Him. To Him be the glory, honor, power and dominion forever and ever!
We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden
"No temptation has overtaken you except what is common to humanity. God is faithful, and He will not allow you to be tempted beyond what you are able, but with the temptation He will also provide a way of escape so that you are able to bear it."The problem with using this scripture for a reference during times of hardship is that it is not accurate. This scripture is referencing a temptation. Dictionary.com defines "tempt" as:
1 Corinthians 10:13
verb (used with object)We weren't being tempted when Caleb was diagnosed with a brain tumor. We were in complete turmoil and at the end of our strength. Our entire world was crumbling around us. Actually, the apostle Paul said very accurately what we were feeling in 2 Corinthians 1:8-9 (emphasis is mine):
1. to entice or allure to do something often regarded as unwise, wrong, or immoral.
2. to attract, appeal strongly to, or invite: The offer tempts me.
3. to render strongly disposed to do something: The book tempted me to read more on the subject.
4. to put (someone) to the test in a venturesome way; provoke: to tempt one's fate.
8 We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired even of life. 9 Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead.Paul clearly states that what he was going through was more than he could handle. So much so, that he wanted to die. But he also knew why it was happening -- so he would rely on God and not himself! Eric J. Bargerhuff wrote in The Most Misused Verses in the Bible,Surprising Ways God's Word Is Misunderstood [Kindle Edition]:
So the popular notion that "God will never give us more than we can handle" is in reality a blatant falsehood - a lie. He will give us more than we can handle, and this for the express purpose of bringing us to the end of ourselves so that we realize our very life, breath, and sustaining power comes only from God all the time. Jesus clearly said, "Apart from me you can do nothing" (John 15:5).He's absolutely right! The entire time we battled that tumor, we prayed for God's will to be done and for Him to be glorified, no matter the outcome. We fully relied on God. We had to. There really was no other choice for us. Our reliance on His strength and power is the only thing that sustained us through that time and still does today as we continue to mourn Caleb's loss.
Now, were there times during that battle that I wanted to give up, just walk away from everyone and everything? Yes. I was able to bear the temptation of giving up because Jesus sustained me with the ability to overcome with me continuing to rely on Him for comfort instead of shutting myself off from the world.
I read this introduction to a book I got today called, Hope in the Midst of Tragedy, by Shelley Hitz.
Have you been through difficult times in your life? If so, you are not alone. Jesus says in John 16:33, "In this world you will have trouble. But take heart! I have overcome the world." Notice that He doesn't say that we might have trouble or that if we have enough faith we will escape it. He clearly states that on this side of heaven we will walk through difficult times in our lives.
And yet we have reason to hope.I can't wait to get into this book! And, I think I have found a new scripture to use for anyone in the midst of a trial or tragedy - Romans 15:13. To me, it expresses the need to continue trusting in God in the midst of the circumstance while maintaining hope in Christ. It made me think about all the times during Caleb's battle that we had nothing but hope. We were at the end of our own abilities and knew that the only way we would survive was by desperately clinging to our Lord and Savior for hope, strength, comfort and mercy.
This book is my own personal journey to finding hope after a tragedy hit our family. However, I did not want this book to be my story alone. Instead, I want it to be a resource for you to find hope in the midst of your own difficulties. That is why I have added the sections that you will see through the book called, "From My Life to Yours," where I add journaling prompts and reflection questions for you to apply what you are learning to your life. I pray that God leads you to find His hope no matter what you are currently walking through.
"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13
So, will God give me more than I can handle? Absolutely! And I know that He will be right there with me in the midst of it as I continue to worship and glorify Him. To Him be the glory, honor, power and dominion forever and ever!
We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden
Sunday, October 7, 2012
The Miracle That Wasn't, Or Was It?
I heard a new song a couple weeks ago that Taylor Swift performed during the recent Stand Up To Cancer event. Now, I am not a Taylor Swift fan and couldn't tell you any song she has ever performed. Not because I don't like her, but just because I don't know her. It's not the genre of music I listen to on a normal basis. However, this particular song grabbed me from the very beginning. By the time she got to the third line of the song, I was already in tears and continued to cry for the remainder of the song. It is such a poignant and moving song that I listened to it over and over for about 2 hours.
This song could have easily been something I wrote myself. From what I've been able to gather, Taylor wrote this song after reading the blog of a little boy named Ronan. She also gives co-writing credits to Ronan's mom. Ronan died from neuroblastoma just 4 days before his 4th birthday & 46 days after Caleb died of DIPG. It is such a fitting song. I understand the depth of emotion in it and feel the pain of loss in every single word.
"Ronan" by Taylor SwiftWhen I heard the line "Race cars on the kitchen floor," I immediately remembered the picture of Caleb on the living room floor with all his cars lined up across the room. That was the line that got me started crying.
I remember your bare feet down the hallway
I remember your little laugh
Race cars on the kitchen floor
Plastic dinosaurs, I love you to the moon and back
I remember your blue eyes looking into mine like we had our own secret club
I remember you dancing before bed time and jumping on me waking me up
I can still feel you hold my hand, little man,
And even from the moment I knew
You fought it hard like an army guy
Remember I leaned in and whispered to you
Come on baby with me
We're gonna fly away from here
You were my best four years
I remember the drive home when the blind hope
Turned to crying and screaming, "Why?"
Flowers piled up in the worst way
No one knows what to say about a beautiful boy who died
And it's about to be Halloween
You could be anything you wanted if you were still here
I remember the last day when I kissed your face
And whispered in your ear
Come on baby with me
We're gonna fly away from here
Out of this curtained room in this hospital grey
We'll just disappear
Come on baby with me
We're gonna fly away from here
You were my best four years
What if I'm standing in your closet trying to talk to you?
And what if I kept the hand me downs you won't grow into?
And what if I really thought some miracle would see us through?
But maybe the miracle was even getting one moment with you.
Come on baby with me
We're gonna fly away from here
Come on baby with me
We're gonna fly away from here
You were my best four years
I remember your bare feet down the hallway
I love you to the moon and back
Taken March 22, 2009 |
But the part that really got to me was "And what if I really thought some miracle would see us through? But maybe the miracle was even getting one moment with you." We didn't get the miracle we thought we would get. We got one better than we could have ever imagined.
I have always considered Caleb to be my miracle child. I used to love messing with people's heads about it. I would say, "Caleb is my miracle baby. He was born just 5 weeks after I had a hysterectomy." Everyone would ask how that was possible and I'd say, "The miracle of adoption."
Even the way Caleb came to us was a miracle. Richard & I had tried for 7 years to get pregnant with no success. In January 2005, I finally saw a fertility specialist & had a laparoscopy done. I was told I had severe endometriosis and that my ovaries were already shutting down. My only chance of maybe getting pregnant was in vitro fertilization with donor eggs. Richard and I decided at that point we would try to adopt instead. We got so excited about the prospect of adopting that we went to a garage sale and started buying stuff for the nursery. We managed to score a crib with two mattresses, all kinds of bathing supplies, toys & filled the crib with baby clothes for $100. I should have known then that God had planned a little boy for us because the only baby clothes we got were boy clothes even though we had no idea at the time if we would adopt a boy or a girl.
In March 2005, I was speaking to the lady in charge of an outreach ministry about the preparations for the nursery. She asked if I was pregnant and I told her no and that we were planning to adopt. I asked her to let me know if she ran across a woman who was looking to make an adoption plan. She looked at me with surprise and said, "You are not going to believe this, but I have one right now!" She then said she was getting ready to go to Germany for a month, but would head straight over to see the woman and tell her about us. I knew right then that God was orchestrating something miraculous for us.
We got in touch with D and I finally met her in person on (get ready for this) March 25, 2005. Needless to say, many more things occurred during the remaining process that confirmed what a miracle child he would be.
I firmly believe Caleb was my little miracle. The way he lived his life with such total dedication to God was absolutely amazing. The way he bravely fought the tumor that would eventually take his life was nothing less than miraculous. He taught me so much about living, laughing and loving. I am truly blessed to have been chosen to be his mom.
This Wednesday, October 10th, will mark 2 years since Caleb's diagnosis. Since this weekend has already been a bit emotional, I am asking for extra prayer to help us get through this week. I don't want to be home and I don't want to be alone. I still have occasional flashbacks of that day.
We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden
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