The Bell Ringing

11.03.2014:  10:00 PM

October has been quite a month of milestones.

Annakate finally earned her first degree black belt.  Finally. She was set to test for it in August, but came down with a horrible sinus infection the day of the testing. She had to set it out back in August, which led her to wait for the next testing cycle. Her three years of hard work have paid off.  We are so proud of her for sticking with it -- even when she was burned out. We thought at first she was going to call it quits after earning her first degree; however, she has now decided to work on her second degree.  That process will take her another eighteen months.

 

 

Her instructor, Mr. Kennedy, has the honor of assigning a saying of sorts that represents her on her black belt.  He chose "gifted".  I couldn't agree with him more. 

 

 

October 21st marked the day of Davis's last oral chemo - and what we later found out to be his very last chemo of any kind. (We were under the impression that he would be receiving port chemo on his October clinic visit, but he did not.) I was taken a back a bit that the moment of the last chemo wasn't a rejoicing of any kind. It was rather mundane and routine. I forced Davis from his sleep into a sitting position around midnight like I had done for months and months before, slipped the two pills into his left hand, and placed the cup into right. He threw back the pills and took a big gulp.  He laid back down and was back to sleep, though I doubt he was ever awake to begin with. I just sat there taking him and the moment in. I couldn't help but let my mind wonder back to the weekend Dr. Leifheit had called to tell us that she suspected that he had cancer. I remember leaning over him all throughout the nights thereafter memorizing his every feature, whispering fragmented prayers over and over again. And here we are . . . at the end of a journey so surreal and unimaginable. In the quiet of the night following that moment when Davis took his last oral chemo, I appreciated the stillness in the room, my son peacefully sleeping in front of me, and I earnestly thanked God.  

 



October 24 marked the much anticipated bell ringing.  If you aren't familiar with the significance of the bell ringing, it marks the end of chemo treatment and the beginning of remission. All cancers have different lengths of treatment. Davis, having Leukemia and being high risk for relapse, had one of the longest treatment plans - 39 months.

Davis, Dr. Huang, and the clinic nurses

 

We were surrounded by our loving family and Davis's team of doctors and nurses.  After Davis rang the bell, the doctors and nurses presented him with a framed certificate stating his completion of chemo and his beginning of remission. The group, Friends of Kids with Cancer, gave him a gift card and they are making a canvased picture from his bell ringing.  The clinic docs and nurses gave him an ice cream cake - his favorite - and he took it over to the in-patient side to share it with his friend, Ethan. 

 

It is always nice to visit with Ethan and his family.  As much as I hate cancer, I never regret or discount the wonderful people we have met and the friendships we have cultivated through these shared experiences.  Ethan, as I may have mentioned, is a young man from our home town who is a year older than Davis.  A couple of months ago, he was diagnosed with Osteosarcoma. 

 

Our visit with Ethan and his mother was brief because we had family waiting and a melting ice cream cake to eat.  We, with the rest of our family, went to The Hill, an Italian neighborhood not far from the hospital, and ate at one of our favorite restaurants.  It was perfect. That is the only word I think best describes it. We were celebrating the end of a journey with the very people who held us up -- physically, emotionally, and in prayer -- from the very beginning.  Not that there weren't others who did the same, but there is something to be said about family.

 



Photocred to my dad. He wasn't in the picture because
he was taking it.

So where does that leave us?  Davis is in remission, and we are in a much better place on this journey than we have ever been.  But remission is a red herring of sorts. Dr. Huang, Davis's oncologist, is very optimistic that Davis will remain in remission. We have done everything possible to ensure this. Davis never missed one dose of chemo on our watch, and he took all the chemo his body could possibly handle. As Dr. Huang put it, "We have given Davis the best possible chance." The first two years, Davis is at the biggest risk for relapse.  Once he hits the five year mark, his chances of relapse reduce significantly.  At the ten year mark, his chances of relapse are very slim.

 

Davis will continue to go to Children's every month for check-ups for the first year. He will have a CBC and a CMP done at Children's as well.  They will be monitoring his counts as his body adjusts to its new normal. They will also be able to examine his blood if there is a cause for concern. He will be monitored for side effects. Obviously, his heart, kidneys, and liver are at risk for damage because of the chemo he took over extended periods of time. His medical team, with our help, will keep an eye on his neuro-cognitive skills as they are sometimes affected by the Methotrexate he received intrathecally (spinal taps given to protect his central nervous system) and the cranial radiation he received.  There are other side effects as well, such as neuropathy, that the medical team will be monitoring. Davis has had very few side effects this far, and I contribute it to prayer and the power of God. I know without a doubt that as bad as this journey has been - and it has been down right awful at times - it could have been so much worse.

 

Hopefully, if all goes as planned, Davis should have his port removed in February. I feel that when it is out, then remission is really official. Davis will be able to play contact sports, swim in ponds, play in creeks, roughhouse, take Tylenol . . . all things that so many teenage boys take for granted. 

Flu shot. Ouch!



Davis will continue to complete breathing treatments of Pentamadine every month. His immune system will still be recovering for the next six months. He won't be able to receive his vaccinations for the next year, except for a flu shot. And exposure to chicken pox will still be a concern for the next year as well.

 

This is truly a time of celebration. Our church's Sunday School department organized a bell ringing of their own in Davis's honor.  All of the kids had bells that they rang as they moved Davis's name from the prayer list to the praise report.  It was so moving to see all of these children who prayed for Davis rejoice in his accomplishment. 

 

And the celebration continues. Kyle had once told Davis that we would have a massive party when he finally finished chemo and rang the bell, and now it's time to bring that talk to fruition. Go big or go home, right?  Actually, the party is more for all of the people who have helped us in some way along the way, as we will forever be looking for opportunities to pay forward the love and kindness shown to us during our time of need.

 

 

I appreciate the irony of having the gift of crafting words and writing, yet not being able to find the words to sum up the last 39 months. I am so humbled by the outpouring of support for Davis, so moved by the willingness of people to embrace a sick child and a hurting family. . . So proud of the ferocity of those who refused to accept the odds, the statistics, the reality of the situations and united themselves in hope and prayer for Davis. I am so impressed by those who labored this road with us, who stayed right by our sides for 39 long months. In a way, I think Davis belongs to each of you who have invested in him. And I'd like to think that God will use him in a way that justifies all that we have invested for his sake.

I always feel a tinge of guilt asking you for something every time I close, but I know that "the effectual fervant prayer of a righteous man availeth much" (James 5:16). Please continue to pray for Davis, specifically against relapse of any kind. Please pray against long term side effects. We are ready to let cancer go - to move on, to put it behind us, and we want it to let us go. There are very few things I want more for my son right now than he being given the opportunity to live a normal 13-year-old life. I want him to reclaim his childhood that was abruptly taken and marred by cancer. With that in mind, please remember Ethan and his family. I don't think until you have actually lived it, you can fully understand the dynamics of Cancerland. Ethan and his family are still adjusting to their new normal and could use prayers.

Again, I thank you over and over and over again.  Your prayers are never wasted, and your support is always valued.

We will keep you posted.