Tuesday, October 25, 2011

Peace in the midst of the tempest...

I was talking to Richard the other day and mentioned how amazed I am at the sense of peace that we have had these past few months. I've been following several other DIPG families as they fight for their childrens' lives. Some are still fighting and some have passed into eternity. It somehow seems strange to me that we don't seem to be struggling with the depth of grief that some of them are. Some are lashing out at God and those around them. Some are struggling with guilt over things they said and did. A few are almost paralyzed with grief and fear that the same thing may happen to their other children. I have only seen or read about a couple whose experience seems to mirror our own and it is very evident in their writings that they (like us) have a very deep, abiding, loving relationship with Jesus Christ.

One of the mom's (Bonny Dales) wrote:
The gap that Roan has left behind is sometimes too hard to bridge, all we can do is pray for healing, strength and a continued faith that God has not let us fall and will continue to hold us in the years to come. This is a life sentence, although I could understand how some parents may see it as a death sentence. It is a choice we make - to get up everyday, to choose to see the world in a good way, to choose gratefulness over bitterness or jealously.
Now, I'm not implying that any of the others do not have a relationship with Christ or even knocking the stage or level of grief they are experiencing. I know that everyone grieves in different ways, at different stages & at different times. I would never dare presume that I am doing anything any better or worse than another grieving parent. However, I am humbled and amazed at the strength we have been given through Christ.
Philippians 4:13 (Amplified)
I have strength for all things in Christ Who empowers me [I am ready for anything and equal to anything through Him Who infuses inner strength into me; I am self-sufficient in Christ's sufficiency].
I draw on that strength on a moment by moment basis. There are times that I feel overwhelmed and wonder how I can face the day. Then I think about what Caleb endured during those long 5 1/2 months of treatment (and even the few months before diagnosis) and realize that I have to shake off the despair that seems to overshadow me because he would not want to see me like that. Every time he saw me cry, he would reach over, give me a hug, wipe the tears from my eyes and say, "It's okay, Mommy. I'm here. You're going to be okay." His love was apparent in everything he said and did, but was still just a shadow of the love of Christ. I know that Christ holds me in His arms and whispers, "It's okay, Angel. I'm here. You're going to be okay."

When Caleb was first diagnosed, Richard and I determined that no matter what happened, we wanted God to be glorified in all of it. We made a conscious decision that we would not walk in guilt or regret over things we did or said before his diagnosis or even things we didn't do. We chose to rejoice in the Lord and turn our cares over to Him. We praised Him for the small and the large things. I can honestly say that we were even able to praise Him when Caleb passed away, because we know that Caleb is in the presence of God and is no longer in pain. We thanked Him for everything -- the staff we interacted with, the other families we met, for Caleb's complete and total healing. We sought after God with our entire being because we couldn't imagine going through that storm without Him.
Philippians 4:4-8 (Amplified)
4 Rejoice in the Lord always [delight, gladden yourselves in Him]; again I say, Rejoice!
5 Let all men know and perceive and recognize your unselfishness (your considerateness, your forbearing spirit). The Lord is near [He is coming soon].
6 Do not fret or have any anxiety about anything, but in every circumstance and in everything, by prayer and petition (definite requests), with thanksgiving, continue to make your wants known to God.
7 And God's peace [shall be yours, that tranquil state of a soul assured of its salvation through Christ, and so fearing nothing from God and being content with its earthly lot of whatever sort that is, that peace] which transcends all understanding shall garrison and mount guard over your hearts and minds in Christ Jesus.
8 For the rest, brethren, whatever is true, whatever is worthy of reverence and is honorable and seemly, whatever is just, whatever is pure, whatever is lovely and lovable, whatever is kind and winsome and gracious, if there is any virtue and excellence, if there is anything worthy of praise, think on and weigh and take account of these things [fix your minds on them].
We have come to more fully understand the peace Paul talks about in his letter to the Philippians. It's so very hard to describe it, but very tangible to us. We choose daily to think on positive things to keep us close to the presence of Jesus.

That doesn't mean that we don't have times where we totally lose it. For instance, today marks exactly 7 months since Caleb passed, so it's a bit of an emotional day already and I've been trying to keep myself occupied. In today's mail was a letter addressed to Caleb from the dentist reminding him that his dental check-up is "now several months overdue." I started to cry and then got angry at the dental office for sending that stupid letter. I thought to myself, "That's because he's been dead for 7 months as of today. I've told you several times that he's dead and asked that he be removed from your system. What more do you want -- a copy of his death certificate?" I allowed myself to rage for a couple of minutes then turned it over to God. I sought refuge in my Savior's arms. I told Him how much it hurts to receive mail for Caleb from people who already know he's gone. It's difficult enough from people who don't know, but it's a little worse from people who do. I took the letter to their office, spoke gently to the office manager and again requested that we not receive any more mail for Caleb. I teared up again, but remained calm. She apologized, took care of the situation, and I left. 

There have been times when I'm alone that I cry out to God.  "I don't understand why this had to happen. I want my baby back. What is Your plan to make something good from this?" I'm not mad at God, but the situation and still I yell. I cry. I scream. I know God can handle it. He knows my pain better than I do. He has experienced loss on a much greater scale than I can ever imagine. I let Him calm me down and give me peace in the midst of the tempest. And I know that whenever I need Him to do so, He always will.

Caleb is always in our hearts and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden

Monday, October 10, 2011

Our first "One Year Mark" -- Diagnosis

The day started off normally enough. We woke up a little late and were running around trying to get ready for church. We had to be there early because Richard was ushering that morning, but I was not scheduled to sing. I had already pulled Caleb's clothes out for him and told him to get dressed. I was getting Caden dressed and fussing at Caleb for taking his time getting dressed. He had been taking a long time to get dressed for a couple of weeks and we would fight about it every single morning. He kept saying, "I can't do it." I knew that he knew how to get dressed and thought he was just being difficult. I hollered at him from the other room, "Get dressed NOW! You know how to do this."

"But, Mommy, I can't," he whined. That blasted whining was getting on my last nerve.

We finally got everyone ready to go and headed off to church. By the time we got there, I was already feeling frazzled and needed to calm down. One of the ladies there could tell I needed a little time and offered to take the boys to another room and play with them for a while. I welcomed the offer.

Around 9:45am, I went to get Caleb to take him to his classroom. Berry asked, "Caleb's right-handed, isn't he?"


"Well, he hasn't been using his right hand all morning. He's been using his left hand to do everything and his right hand is just hanging limp at his side."

I said I'd check into it and helped him up. When I touched his right hand, it felt like ice. I reached over to check his left hand and it was warm to touch. I led him towards his classroom and noticed he was having extreme difficulty walking. It was as if he was using pure momentum to propel his right leg forward. It swung awkwardly around as he walked. He was slurring his words when talking and had this glazed look in his eyes. The right side of his mouth was hanging down somewhat and he was drooling a little. I started getting very concerned that something serious was wrong.

I went over to Richard and said, "Honey, I don't think we can wait until tomorrow to take him to the doctor. I'm calling the pediatrician now."

I stepped outside with Caleb & called our pediatrician. After the answering service connected us, I began telling Dr. P. what was going on with Caleb. After I described his symptoms, Dr. P. said, "Stop what you're doing right now and take him to Children's in Plano immediately. I want him there because if they need any scans, Children's is equipped to handle it."

I knew at that point that something was truly wrong. My heart started pounding wildly inside my chest and my stomach constricted. I began to cry, rushed inside to Richard, told him what the doctor said and that we needed to leave immediately for the emergency room. I got Caden from his classroom while Richard slipped inside the sanctuary to tell Pastor where we were going & why.

As we drove to the ER, Caleb was getting very upset in the backseat. He started yelling, "I hate you. You're the meanest parents EVER! I want out of this seat NOW!!!" He wasn't acting normally at all. Our sweet little boy had turned into this raging, screaming, angry child that we didn't recognize. Richard and I started guessing what could be wrong with him. We guessed several things, but weren't even close.

When we got to the ER, we took him inside and began the check-in process. As I was explaining his symptoms, a nurse was walking by the door. She backed up and said, "Say that again." I did and she said, "Come with me right now."

We walked through a full waiting room and went straight back to a room. I know that they take cases out of order based on the seriousness of the condition and I tried desperately not to panic. Within two minutes there was a doctor in the room with us and it was all I could do not to cry in front of Caleb. I didn't want to frighten him, but I knew having a doctor with us that quickly was not a good sign. She asked him his name and he slurred out, "Caleb." She then said, "Hi, Caleb. We're going to play a game now. Can you hold your arms out in front of you like this and pretend to fly like Superman?" He held his arms out and the right one was slightly lower than the left. She then said, "That's great. Now close your eyes." The moment his eyes closed, his right arm fell. She next had him stand up and try to walk along a line on the floor. He couldn't do it. She turned to the nurse and ordered an immediate CT scan.

Caden began fussing so I took him out to the waiting area to feed him. Caleb was already hungry, but they wouldn't let him eat and I didn't want to make it worse by feeding Caden in front of him. Caleb was taken for his scan and shortly thereafter Richard came to get me from the waiting area.

As I walked back down the hallway with Caden, I noticed an ambulance crew hanging out near Caleb's room. I remember saying a quick prayer for the child they were there for. When we went inside, the doctor asked us to sit down. She said, "The CT scan shows a mass near the base of his brain stem. We don't know what it is."

"Is it cancer?" we asked.

"I don't know. All I can tell you with certainty is that something is there. They'll run more detailed scans downtown. We don't have the people on hand right now to do an MRI. We're going to transfer you downtown. The ambulance crew is already getting things set up. One of you can ride with him."

I knew I wouldn't be able to drive downtown and asked if I could ride with him. Richard said okay, grabbed Caden and told us he'd meet us there. He called his mom again to update her and she said they were already on their way towards Dallas.

Then the ambulance crew I had seen outside Caleb's room brought the gurney into our room. I managed to hold it together until Caleb was settled in the ambulance. As he watched Teenage Mutant Ninja Turtles on the ride downtown, I broke down in the front seat.

I thought we would be going to the ER downtown and was surprised when they took us straight upstairs to the Neurosurgery floor. I could barely breathe at this point and was numb. I'm pretty sure Richard was feeling the same way.

Not long after we were admitted to the hospital, one of the neurosurgeons walked in. He told us that because of the location of the mass, there was no way he could operate on it. It was located inside Caleb's brain stem and to even attempt to operate could kill Caleb outright. I tried to comprehend what was going on and felt like the world was spinning around me. I couldn't stand up. He then told us that after the MRI, we would be transferred to the oncology floor and the oncology team would meet with us to determine next steps.

Our nightmare began that day and hasn't stopped yet. It's been exactly one year since Caleb was diagnosed and 6 months/15 days since he died from DIPG. Those two dates -- 10.10.10 and 03.25.11 -- will forever be etched in my mind as the days my world crumbled. I still miss him every day.

Caleb is always in our hearts and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden


Another DIPG angel's mom wrote this on her blog recently & I thought it very poignant & true:

Tragedy does not wait for permission to enter our lives, it's an unwanted guest and you never know when it may arrive - So appreciate all the moments that are devoid of tragedy- cherish them, capture them and hold them close. My prayer for today is that tragedy stays at bay, that you all have a blessed and happy day and that you take a moment to look up.

Friday, October 7, 2011

A Lasting Impact

Our friends' 11 year old daughter, Enya, had a school assignment to write a paper on a real event in life that made a lasting impact on her and she wrote about Caleb. With their permission, here is her paper.


Caleb's Last Christmas
by: Enya McDonald

Have you ever heard one of those heart-breaking stories of a young child dying of cancer? Well, I've lived one of those stories, his name was Caleb.

Caleb was a normal boy, adopted as a baby, played football, had a little brother. That all ended when he was diagnosed with a brain tumor. Caleb was a lucky boy, in a way, he had a family that never gave up on his fight for life. His last Christmas was spent with family and close friends. I saw him last at the Scherer's annual Christmas Party.

It was Christmas Eve, as it is every year, I was feeling excited for it was sure to be a wonderful party. The excitement of my birthday (which was only the previous day) had me in an especially festive spirit. My mom sat my brother and me down and told us, "Do you kids remember Caleb?" We both nodded, I felt a knot of concern growing in my stomach. "Well," she continued, "he was diagnosed with a brain tumor..." I thought I was going to puke, Caleb was only five. "The tumor is messing up his body, so he's gonna look...different, so don't stare or anything." At this point my mom and I were both tearing up. We grabbed the presents and got into the van.

I was numb with worry, if it was getting my Mom worked up like this, Caleb wasn't doing well. When we got out of the van, a wave of terror hit my stomach and threatened to spill over in the form of puke. I put on a fake, excited smile and opened the door.

I heard yells of greetings and hugged Mr. Andy, my adopted Grandpa (he's not actually related to me). Then, I saw Caleb and the brief moment of relief I had in Mr. Andy's embrace vanished; I almost broke down crying right on the spot. My heart skipped a beat, my hands got clammy, but I kept a smile plastered on my face. I remember my mother's words and looked away from him, but that image lingered in my mind. He was sitting on the floor playing with a toy fire truck. He was HUGE and couldn't move his mouth well, so he just moaned and yelled the whole time. He was like a swollen one year old. When he saw me, he said my name and reached his arms out towards me; my heart shattered like glass when I saw the look of joy in his face. I set the presents down and gave him a bear hug. I played with him for awhile, but then he started playing with his cousin, Bella. When I got up I felt like a wind-up toy, moving and functioning systematically until I could wind myself up again.

Even now, most of the night after that is a blur. I don't remember who I talked to, or what presents I got. I distinctly remember the look of wonderment on Caleb's face when we turned on all the yard decorations. I remember swelling like a balloon with happiness, pride, hope and sorrow when I saw him trying to walk and get a closer look at the decorations. I felt such pride when he took a liking to the reindeer Christen, Cody and I had taken two days to string. We left shortly after that.

I remember falling asleep that night thinking to myself, "Life is a precious gift and I never want to take it for granted ever again."


Caleb is always in our hearts and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden