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.




 

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.

 



The Dawning of Another School Year

8.9.2014: 12:20 PM

Has it really been six months since I last blogged?  Boy, have we been busy with life.  This feeling - the business of routine and involvement - is the feeling I longed for when Davis was in the midst of some of his worst treatment. I was quite the skeptic when the doctors would tell me that life would eventually feel "normal" again; and now, we are here.

I can not fairly recap the last six months, but I will do my best. 

Davis finished 7th grade and Annakate finished 4th grade. She is apprehensive to leave Ashmore School and afraid and nervous to join the couple hundred other kids at Jefferson School. Notably understandable. Davis is one year away from high school. I am struggling to wrap my mind around that one. When he was five months old, I remember rocking him to sleep in this green glider Kyle's sister had given us. There was enough light from the night light to cascade on the side of his face that wasn't rolled into my arm. I remember studying everything about him. Willing my mind to remember how his lips puckered out when he slept, the length of his lashes, the folds on his neck, the feel of his young skin. I prayed over my son as I willed the memory to be permanent.  I remember asking God to see us through the stages of time, and I smiled when I mentioned protection in high school. I was amused because here I was holding my five month old, praying for something that seemed so ridiculously far away. Time is far more sweet than bitter, but I would be lying if I didn't wish from time to time that I could go back to that night in the green glider and memorize him all over again.

Totally sidetracked. Where were we? 

Summer.

Summer and good health afforded us the time travel a bit and do some things we love.

 

This is the newest addition to our family. It was the 4th grade class pet, and Annakate fell in love with him. His name is Truman. He really is making a  great pet. Annakate is still smitten with him. He is pretty patient with her. 

 

After school finished, I headed down to Florida. My dear friend married on the beach. Kyle met me down there, and we were able to spend some time with friends. I loved every minute of it.



 

We were able to spend a bit of time (not much) on the lake. Next summer will be even better. Davis still can't get in the water because of his port. There is too much risk for infection. Next summer, he won't have a port. Yay!

 



 

 

Davis went on his first choir tour. The youth in the church traveled to Texas this year to sing and witness. Davis was gone for ten days touring Texas. I was able to fly down for a few days to celebrate his birthday with him. It was an amazing experience for him. The youth in our church operate like a family; they look out for one another. The older ones shepherd the younger ones. 

Orpheum Children's Science Museum

The Pottery Place



 

We spent a few days camping in Tennessee near Lake Kentucky. It was a great deal of outdoors. We spent time fishing and riding bikes. We also toured the Civil War fort, Fort Donleson, and were engulfed in the history and the breathtaking views.

 

 

 

Kyle has decided he needed a kayak. He doesn't strike me as an avid kayaker, but who knows? He is always full of surprises.

 



 

We put up quite a bit of sweet corn already. This was a great year for gardening, and Kyle has managed to stay on top of our gardens this year. (Sadly, gardening has never been a joy of mine.) Above, the kids are raiding my mother-in-law's garden.

 

 

Our only medical setback this summer has manifested on Davis's skin. He has been fighting ingrown toenails all summer. The oncologist tried some antibiotics to fight back the infection, but they didn't work. The next step would be surgery; however, the doctor doesn't want Davis having any procedures done until after he is done with chemo and his port is removed, because the risk for infection is too high.

 

In July, Davis developed a large blister on his bottom lip (looks like a giant canker sore) and sores on the bends and folds of his fingers. Our pediatrician was at a loss, so we headed back to St. Louis. Davis's doctor (one of them) was equally perplexed. She did a viral and bacterial swab check and a CBC and CMP. Her thoughts were that the blisters were related to an infection or his chemo. She was going to monitor Davis's liver enzymes, and if they trended upwards, then the blisters would be related to his chemo.

 

The viral and bacterial check came back negative. Not an infection. The CMP was normal for a kid on chemo. The plan was to wait two weeks and go from there.  On August 1st, we headed back down for a scheduled chemo visit. Davis met with a dermatologist who confirmed what the oncologist suspected, chemo toxicity. Unfortunately, there is little to be done. The blistering is a rare side effect of one of his chemotherapies, Methotrexate. And Dr. Huang, Davis's oncologist, is a firm believer at not stopping chemo unless it's life threatening, so Davis will endure the blisters for a few more months. He was given an antidote to the Methotrexate. Hopefully, it will help; however, it hasn't been super effective in the few others who have experienced this. The blisters, although annoying, a tad painful, and a risk for infection, are nothing in comparison to what the side effects could be. Still blessed beyond measure.

 

As you may already know, Davis will have his last round of chemo some time in October. Three years and three months of chemo almost finished. Quite a journey, and it's not over yet, nor will it be over in October, but life is easier and we have grown in spite of cancer.

I ask you once more to keep praying for Davis. There are still risks and concerns after chemo ends. He is facing risk of infection every day the blisters don't heal. But I know between intercessory prayer and God's goodness and mercy, Davis will be and is healed. So thank you in advance.

We'll keep you posted.

The Odds Were Against Us. . . But We Perservered

 

2.5.2014:  11:54 PM

 

Kyle and I typically take the kids on a little trip for their Christmas present from us. It's a tradition we started when they were babies, and we love doing it. This year - against my wishes for a warm beach - we decided to take the kids skiing.  Kyle had never been, and it had been well over twenty years since the last time I hit the slopes. We found a last minute deal to an amazing resort in Wisconsin Dells and booked it.

 

In retrospect, a series of events attempted to ruin our trip.  However, we rose to the occasion and conquered. The first being that the night before we left for our little vacation, our basement flooded.  I'm not sure exactly what happened but something went awry with the water softener and there was water everywhere! We were shopvac-ing water inches deep.  I had every towel that we owned blanketing the carpet.  I even summoned the kids out of bed to walk on the towels to sop the water out of the carpet. It was a mess. 

 

We left on schedule and made it to Wisconsin.  The activities were endless.  There was an arcade, an inside carnival, and an amazing water park. The activities definitely kept the kids busy.



 

 

The kids had a great time trying their little hands at repelling.  It was a lot harder than it looked.

Kyle's going to kill me.  We were on the Ferris wheel, and he was goofing off.  I love this picture.

Saturday, January 4th, we headed for the slopes.  Annakate was really apprehensive about skiing. She was content with tube sledding all day, but we wouldn't have it. We insisted that she try it.  It took us all nearly half of the morning to get geared up - literally. By the time we had all of our gear strapped on, I was already exhausted.  Nevertheless, we headed out and up the bunny slope. 

 

The kids were naturals.  Well, let me take that back. Davis was a natural. It took Annakate awhile to figure out how to get off the lift and remain upright.  Before you know it, they were both zipping down the slopes and weaving in and out of the people standing around. I was impressed. We eventually graduated off of the bunny slope to a bigger slope. It was by no means a pro slope or anything, but it was longer, higher, and less crowded than the bunny slope.  Again, the kids took it with ease.  I think the kids fell more just standing around than they did actually skiing. 

 And then Davis dodged a near collision. Someone crossed his path, and in an effort to avoid a collision, Davis literally sacrificed his body and threw himself down into a tumble.  I was a couple hundred feet behind him and saw him actually roll with his skis on. Apparently, we hadn't mastered abrupt landings because that definitely wasn't the way to do it.  He laid on the ground as I passed him up. I tried stopping but couldn't slow fast enough. Eventually, I just threw myself to the ground too.  Kyle and Annakate were in the lift watching me, but hadn't seen Davis fall up the hill to by back.  I could hear them heckling me and motioned them to Davis.

By the time I removed my skis and trudged up the hill to where he was, another gentleman with some medical experience was seeing to him.  Davis was complaining that his arm hurt and he couldn't move. Great. I was able to get his skis off and we began the very long and awkward - awkward because ski boots are tough to walk in and I was carrying two sets of skis and my poles down a mountain - walk down the mountain.  By the time we were at the bottom, Davis was in near tears over his arm. Kyle asked him, "How bad is it? Do you think you need to go to the hospital?" And Davis said, "Yeah." Ski trip was over.

We took off our gear, which was much easier than putting it all on and headed over to the first aid station. We thought we would get their opinion before we headed to a hospital.  A couple of nurses checked him out. The one closest to me told Davis, "Honey, it's looks like it could be a little sprain." And then she leaned over to me and whispered, "Mom, it's looks like it's broken."

We headed to the hospital.  We took a long cut to a clinic that didn't recognize our insurance. A few hours and x-rays later, it was confirmed that Davis had broken his wrist. It was an impact fracture from trying to catch himself when he fell.  He was placed in a splint until we could get home and meet with an orthopedic doctor. 

At the first aid station at ski resort.

 

Hospital waiting room.  He's still smiling.

Home didn't quite happen. The next day, Illinois was hit with a huge snow storm. And while Wisconsin didn't have any measurable snow, the temperatures were worse than frigid.  Since we couldn't safely travel home, we drove over to Kyle's brother's house a few hours away. Talk about making lemonade out of lemons. We spent the next couple of days being snowed in with our family. We watched movies, played games, ate pizza.  The kids loved spending time with their cousins, and we enjoyed the impromptu add-on vacation.

 

A couple of days later, we finally made it home.  A couple of days after that, Davis finally made it in to see the orthopedic doctor. Davis was in a full arm cast for a couple of weeks.  He then was in a short cast, which allowed for him to bend his elbow. On Monday, he received a splint cast that he can remove to shower and sleep.  He will have to wear that for the next month.  The doctor said that he is healing well.

 

As disappointing as a broken wrist is, we weren't really bothered by it. To me, that is a normal injury. It was kind of nice going to an ER for a reason other than cancer-related reasons.  Normal kid, normal kid injuries.

 

Davis just keeps on keeping on. We have nine months of chemo left. Nine months! I can't believe we are in single digits. I would be lying if I said that the thought of chemo ending doesn't terrify me. Being on chemo has its own set of worries. Being off chemo brings an entirely set of new worries to the game.  My biggest fears, of course, are relapse and long term effects brought on by the chemo he has taken for so long.  I meet my fears with prayer, because, frankly, I feel a little bit helpless. Just as I relied on my faith after diagnosis, I will do the same in October when Davis downs the last chemo pill.

 

I'm not sure who follows this blog anymore, but if you read this, I ask that you still pray for Davis. This road has been long, and it will be years before we can consider him medically cured (Oncologists never use that word. However, we serve a mighty, healing God who does more than medicine ever can.). And please pray for me.  I am really struggling with my fears of what may come after chemo. It seems this nearing time of celebration is anything but, and it shouldn't be that way.

 

We love and appreciate your support.  Every kind word spoken, every inquiry, every uttered prayer is cherished.

 

We will keep you posted.