Today was a long day. It started out very early for us...around 5:30 am. We got up & got ready to go to Birmingham where Noah had three appointments today. We hit the road around 7:15 after filling up with gas and breakfast. The drive down was very nice. I listened to Rick and Bubba rant about our Press Secretary for a while then flipped to some Christmas music; that seemed a lot more soothing than grown men complaining about other grown men.
Our first appointment was with the burn doctor who took one look at his arm and said she wanted to fix it as soon as possible. So Noah has surgery this Friday. It will be a skin graft taken from his hip. The neurologist nurse came down, looked at his stitches and head and said it would be great to install a port for chemo in his chest at the same time. Then we took him to the oncologist and she wants to do a spinal tap to make sure there are no free roaming cancer cells in his spinal fluid. So on Friday, Noah is getting a three-in- one surgery. We feel pretty good about it because it saves him the pain of getting ready for these procedures by two times. I know he will be very sore and uncomfortable when he wakes up which only means one thing - unlimited ice cream! (And by the way as you can see in the picture he is eating a corn dog, he has gained 4 pounds since the surgery!)
In speaking to his oncologist today we learned his pathology report had been sent to one of the best pathology doctors in the world at Johns Hopkins Hospital. They are awaiting conformation before finalizing the plan of action. We discussed what kind of treatment they are recommending and how long it might take. Chemotherapy treatment has come long way in the last years and they have a lot of confidence that we could be finished with the threat of cancer in 6 months to 1 year.
It is so odd saying my son has cancer. It doesn’t seem to make sense coming out of my mouth. The last 24 hours have been a little bit difficult for me spiritually to be honest. You know that feeling you have when you’re pretty confident that things are going to work out one way, and then they totally don’t?? It's not a good feeling. I know many of you reading this perhaps had the same feeling as I did. So many people praying the same thing all over the place and God still says no?? Man - what a disappointment. I have no problem saying it. I am extremely disappointed. I had very high hopes that we had come to the end of our trial. But it is not the end. Not by far.
During these last few weeks, different parts of scripture have suddenly begun making sense to me. I have been in church all of my life, heard countless sermons and read many books and bible studies. Many parts of the bible I can quote you the scripture, but not really sure why it's there. I can give a text book answer for why it's there, but when it is time for scripture to really come alive in your heart, it is only the Holy Spirit that makes it happen. And that’s when it becomes Rhema.
I have read this passage a lot of times. I have understood it to mean Jesus was tempted in the same ways I am - in anger, lust, greed, pride, doubt, envy etc... and that He can identify with my struggles,
Hebrews 4:14-16 Seeing then that we have a great High Priest who has passed through the heavens, Jesus the Son of God, let us hold fast our confession. 15 For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin. 16 Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.
But I have never thought about Jesus being disappointed in God saying no to a prayer He prayed.
Matthew 26:38-40 Then He said to them, “My soul is exceedingly sorrowful, even to death. Stay here and watch with Me.” 39 He went a little farther and fell on His face, and prayed, saying, “O My Father, if it is possible, let this cup pass from Me; nevertheless, not as I will, but as You will.”
Jesus knows what it is like to want one thing from the Father, to pray for it, and receive a NO for an answer. I have thought about this scripture all day. He asked "let this cup pass from me" and God said "No.”
I have never noticed that God said no to his own prayer. I have read this time and time again, but it really didn’t make sense to me until today. In order for us to have a High Priest who can identify with us in every area, He must know what it feels like to go through such deep disappointment, to have a prayer not answered, and still be able to say "Not what I want, but what You want."
I still have no right to be upset with God. I can still trust God. I can still lean on God, I still have hope in God - My faith is still in God to heal Noah. Oh God, not our will, but Yours be done in Noah.
We covet your prayers during this time. I am asking specifically that you pray for Noah to remain full of joy and peace as he goes through this treatment, that Jessica and I remain strong, that our light shine and that God be glorified through this season of our lives.
To God be the Glory, Great things He has done.
A short note from Jess...
I was excited about writing the update tonight but John beat me to it. Once again, we had a pretty emotional day, and like John said it's hard to realize that our child has cancer. He had such a fun evening with his Mimi, laughed and chased balloons as John would blow them up and let them fly every which way across the living room, turned his nose up at a grilled cheese and requested just potato chips (becoming an every day staple, much to my chagrin). We picked up a super nice gift that a high school friend sent to Children's for him, and played with the puzzle for about 5 minutes, then he discovered the box it came in...the puzzle was history! He seems like such a normal 22 month old (aside from his ginormous scar) until I remember, this kid has cancer. I realize that in about a month I will be reminded of this truth every minute of every day if chemo takes it's toll on him like it does so many others. And you know what is sad?? We are not alone in this predicament. Thousands of children are diagnosed with brain cancer every year. And I never knew that until now. I feel like I've been called to action to alert the world that this is serious, and it's probably in your backyard, or just down your street. I don't know how I will do it...but I just want to reach out and hug any parent who has ever wept over their child, begging to take their place, pleading with God to move the cancer from the child's body to their's...it's the most helpless feeling I've ever had.
We have a pretty "musical" family; we loves all genres. John and I both grew up immersed in anything music related, and we want the same for Noah. Right now he loves Michael Jackson and will dance around the house yelling, "Woohhh!" when he hears his favorite song. I've just recently picked up playing the piano again, so I was thumbing through my old Baptist hymnal, butchering most of the songs I attempted to play. I came to one that I'm sure is an old favorite for many. The words brought tears to my eyes, and I was encouraged in a way I never have been before by this great melody. Christ is my Rock...I will not be shaken by disappointment or grief, anger or sorrow. Here are the words penned by Edward Mote:
My hope is built on nothing less than Jesus' blood and righteousness,
I dare not trust the sweetest frame, but wholly lean on Jesus' name.
When darkness seems to hide His face, I rest on His unchanging grace.
In every high and stormy gale, my anchor holds within the veil.
His oath, His covenant, His blood, support me in the whelming flood.
When all around my soul gives way, He then is all my hope and stay.
When He shall come with trumpet sound, oh may I then in Him be found.
Dressed in His righteousness alone, faultless to stand before the throne.
In Christ the solid rock I stand, all other ground is sinking sand, all other ground is sinking sand!
I hope these words speak to someone else who is trying to stand strong in the "flood." He is our Rock!
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.