Super Bright Light at the End of the Tunnel

10.02.2014:  12:05 AM

We have been blessed with good health the last couple of months, which have provided ample opportunities for some fun.

 

 

 

In September, Make-A-Wish and a generous donor named Mike passed along some tickets to the Illini game.  We were pretty excited as this was the kids first collegiate football game.  The weather was gorgeous and the seats were awesome!!  Nearly front row! I enjoyed a pretty good football game, and Davis enjoyed some talented band members and cheerleaders.  He didn't get into the actual game much, but he was pretty tickled that it was Band Day.  I have to admit; it was pretty cool.  Thank you so much Make-A-Wish and Mike!

Kyle has been plugging along in the fields.  It has been a good harvest thus far. We haven't had much rain, which has led to some pretty long nights for Kyle.  He works so very hard, and I know that the fast pace multitasking and the long hours have to wear on a person.  He never complains though.  We miss him during harvest. We find our own routine with out him, but it isn't easy on anyone. 

Adorable, aren't they?

 

The kids continue to stay busy.  Davis is really doing well on piano.  I just love to hear him play.  He goes through spurts with his practicing; but for the most part, he never has to be told to practice. He is still weightlifting a couple of days a week. He is by no means bulky, but I can't imagine where he would be had he not been strength training for the last couple of years.  Davis isn't drawn to athletics like many boys, and that's ok with us, but we do want him to stay active.  Strength training seems to be a good fit for now.

 

Davis is really enjoying school this year.  He is on the newspaper staff and student council.  He also joined a student Christian group.  All of these activites wear him out; needless to state, he sleeps well at night.

 

Annakate is nearly a black belt in Taekwondo!  She will test in a couple of weeks. She was supposed to test for her black belt in August, but she ended up with a nasty sinus infection the day of testing. I took her to the doctor in the hopes that the evening could be salvaged if she could get on some meds; however, no such luck. She sat out the August testing and waited for the next testing cycle to arrive.  So here we are. 

 

Annakate also started taking piano this month.  She had taken it for a couple of years a couple of years ago and expressed an interest in starting again.  She is doing a great job. She is picking it up quickly, and covers more than she is assigned.  She even asked her piano teacher for more songs to practice.  Annakate also started playing the clarinet this month. I'm not so sure about a clarinet being a former percussionist myself, but she seems to love it and that's what's important.

 

Annakate has captured an audience of one.

 

Davis had chemo on Friday.  Pretty routine except it was his last intrathecal spinal tap ever!!  Wahoo! That's right; we are so close to being done with chemotherapy.  He has twenty days left of oral chemo and on October 24, he will receive his last port chemotherapy and ring the bell.  For those who aren't familiar with bell ringing, the bell ringing takes place when a person completes all of their treatment chemotherapy and is officially considered to be in remission.  Davis has had to watch other children ring the bell for the last three years and three months, and now it is his turn.  It is going to be quite a day of celebration and rejoicing. 

second to last access



I love this picture. He is so peaceful . . . and drugged with anesthesia.
You would never think by looking at this picture that he was on chemotherapy.

 

 

Davis has maintained great counts. He isn't at what a non-chemo kid would be, but he's great for a kid on chemo. His ANC (immune system count; healthy kids run over 1500) is over 3000, and I can remember times when it would be at zero for a week or more. 

 

Dr. Huang, Davis's primary oncologist, informed us a bit of the routine after Davis is finished with chemo.  Davis will still get his bloodwork (CBC and CMP) done monthly. This will monitor his counts and check for relapse. He will still visit the clinic monthly too.  In addition to a doctor check-up, Davis will still be receiving Pentamadine breathing treatments for six to nine months.  This is to protect him from necrotizing pneumonia, a common - very serious - illness in people with compromised immune systems. Davis will still continue his side effects medications. We aren't sure for how long, but as long as necessary.  He will continue to do monthly check-ups for at least one year, and then typically his appointments will be every three months. 

 

I have to honestly admit that the thought of going off of chemo used to scare me witless as it has been the security that Davis's cancer was indeed gone. As the end of the chemo draws near, the excitement dwarfs the fear. And I know this opportunity allows me to truly put my faith  - and my son's life - in God's hands.

 

Yet, part of me knows that the little tiny shadow of worry, of "what if", or fear of relapse will never ever be completely gone.  And the road of long-term side effects wasn't even a real thought when we started this journey, because at the time, it was the lesser of the two evils. Now, as we leave cancer behind, we step onto the path of the implications of all things cancer left in its destructive path. Although I may never stop worrying about Davis's heart, his brain, his kidneys, and his liver, all susceptible to damage by the chemo and radiation, I must continue to earnestly seek prayer for protection and healing for him. I have heard people say from time to time that cancer changes your life forever but it hasn't really been until now that I understand the uncanny truth to it.  But at the end of the day, I serve a God who makes cancer small, a God who loves Davis as much if not more than I do, and that brings me peace.

 

 

 

There was quite a bit of down time at chemo this time. Davis was fortunate to meet up with some Air Force soldiers. They gave him a bear. It's adorable. Davis named it Force. Very fitting for an Air Force bear. They seemed like great guys, and may God bless them for donating their time and resources to cheer up the kids on 9South.  

 

 

 

 

As many of you who are local already know, there are a couple of boys from our hometown  who have recently been diagnosed with cancer. One is a year older than Davis and the other is three years older. On Friday, my mother-in-law, Davis, and I had an opportunity to introduce ourselves to one of the boy's parents as he was getting his port placed.  It was like de ja vu when I walked into the Same Day Surgery waiting room.  His parents were placed in the same small waiting room cubicle that we were placed in when Davis was getting his port placed. The moments following my introduction, my heart broke all over again. I recognized their expressions, their despondency, their grief. I had felt them before. The best word to describe the emotion is broken. They were broken. It's more than a broken heart. It's the kind of broken where your mind and body race with every emotion: confusion, anger, rage, disbelief, desperation, fear. . . and it sucks the life right out of you, leaving you far less than whole. It takes effort to do the simplest of tasks: eat, shower, sleep.  Standing in front of them, there were so many things I wanted to tell them, but I know that at the beginning of the journey you are so overwhelmed. I couldn't even think of condensed advice to make the acceptance or the days ahead easier. I really wanted to say, "It gets a whole lot worse before it gets better." but that didn't seem comforting at the time. I am sure it still wouldn't be.  I share all of that to ask of you this: Would you please call out or just whisper the names of the boys, Ethan and Dylan, in your prayers tonight and every night?  No one in the world, especially children - our babies - should ever have to suffer in the grips of cancer.

 

Please continue to pray for Davis. Despite finishing treatment, there are still a lot of uncertainties.  God is a good God, a healing God, a merciful God, and I have no doubt that He knows my son's name by heart, partly by your efforts.  Again, I thank you in advance for your continued prayers and support.  We couldn't have made this journey without you.

 

I hope to catch the bell ringing next month on video. I will be sure to post it if I do. 

 

We will keep you posted.