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.

3 Month Catch Up + Merry Christmas

 

12.27.13:  10:15 PM

 

Three months have passed. My lack of updates have not been deliberate. We have just been busy. . . thankfully.

 

I figure I would do my best to update you through pictures.  Let's start with October. . . 

 

 

 

Despite her opposition, Annakate competed in another TaeKwonDo tournament. She did so well.  She placed second in form and first in sparring. She really has a knack for sparring.  We were very proud of her.

 

 

At the very end of September, Davis played in his piano recital.  He never ceases to amaze us. He is really blossoming into a great pianist. I am really please that he has stuck with it so long.

 



 

Davis received another spinal. Even though he has received well over thirty at this point, I still watch him be put under every time. My heart doesn't hang out in my throat like it used to, but it hasn't become too much easier to watch either. 

Davis marched with the middle school marching band on Band Night. He was a bit too short for the drum harness which caused some leg bruising. I felt so sorry for the kids. It was seriously thirty degrees max out there. 



 



 

 

Annakate was a sock hop girl for Halloween. She was super cute. 



 

 

Davis had an opportunity to go deer hunting at the beginning of November with the USSA (United Special Sportsman Alliance). It is an amazing organization designed to pair and assist students with life threatening illnesses and conditions with avid and skilled hunters. Davis had no luck last year; he actually came home with a concussion from a scope smacking him in the head. This year, his luck changed. He filled both tags in a matter of hours of being out. He shot a doe first and not long after shot a spiked buck. He loved it! 

Annakate celebrated her tenth birthday in November.  I can't believe that she is double-digits already. 

 



 

If you know Annakate at all, you have probably noticed that she is a bit grown-up for her age. I always joke that she is sixteen trapped in a ten-year-old body. This year for her birthday, she wanted a shopping trip. The above picture is at 2:00 pm.  Not so grown up after all, I guess. 

 





 

 

In November, Davis started complaining on generic symptoms: headache, dizziness, belly ache. over a period of a couple of weeks and a few doctor's appointments, a chest x-ray and blood work was ordered. Davis had pneumonia.   

 



 

 

After Thanksgiving, we went up to Wisconsin for my aunt and uncle's 50th wedding anniversary. It was so wonderful to see my family, most of whom I have not seen for over eight years. I forget how much I miss my family until we are together.

 

 

Davis' November chemo went well.  Pretty routine. He has been doing so well (weight gain, high immune system), the oncologist increased all of his chemo to 100%.  The last time he was at 100%, he was hospitalized for fourteen days.  That was nearly two years ago. The oncologist has been inching his meds up ever since.

 

We also received some pretty amazing news. Davis only has eleven months of chemo left!  If I could do a back flip, I would have when I heard that.  October 2014 all chemo will stop. Finally. The light at the end of this long, long tunnel.

 

Davis had his Christmas band concert.  I loved it. It was held in the high school gym, and I couldn't help but reminiscence over the many band concerts Kyle and I had played in a gazillions years ago. Thinking back, I couldn't have imagined then that one day I would have a son playing percussion in the same spot that I once did. 



 

About the time that all of the Christmas programs started happening, winter welcomed us. It was beautiful, and we were able to get a snow day out of it.  Plus, the slush and the temps didn't stick around too long. Well, I am sure they will return, but I couldn't resist the beauty of the snow.

 





 

Annakate had a wonderful program.  It was our last one at Ashmore Elementary.  She did a wonderful job playing her recorder and singing with her class. 



 

Annakate's school Christmas program was over just in time for her to focus her efforts on the church Christmas musical, "Alice in Bethlehem". Annakate was the Duchess. She was pretty excited about her solo. She did such a good job. All of the children did.  

 

 



Davis was sick for most of December. He continued to suffer from non-descrip symptoms: dizziness, headache, stomach ache. The most daunting symptom was fatigue.  He would sleep a full night sleep and then need to come home from school to take a nap for a couple of hours. Since Davis was not experiencing a fever, the pediatrician thought he might be suffering from some type of virus.  No one knew for sure.

 

By the 15th of December, Davis was sleeping fifteen hours a day, and he was turning yellow. This past Friday, the 20th, Davis went back to Children's for chemo. The oncologist ran additional blood tests and ordered a liver scan. Davis was definitely jaundice. The doctors needed to determine if the jaundice was being caused by the chemo, a virus, or a combination of both. The liver scan determined no lesions or masses. We had to wait for the blood test results. The doctors cut back his port chemo to 25% and suspended all of his oral chemo. 

 

 

Earlier this week, we received word that most viruses were ruled out, so chemo was the culprit for he jaundice. Davis has continued to improve in color and in energy over the last week. Strangely, he has puffed up. He is on prednisone (for five days), but in the last two years, he has never puffed up like this. We are assuming that because of his liver issues, he is processing the prednisone slower than he has in the past. We plan on talking to the doctor on Monday. Yesterday, he had another blood test done. The results revealed that his liver function are within the normal limits, but his platelets are low. So his chemo has been held for another week. We will repeat the blood test next week. Hopefully, his platelets will be up and we will resume chemo.

Kyle and I feel so blessed to have such wonderful children. We continue to believe in God for a complete healing. We know that God has His hand on Davis, protecting his liver and healing him from cancer.

 

May God richly bless you and your family as He has done ours for so long. 

 

Merry Christmas and Happy New Year!

 

Keep you posted.

St. Jude's Benefit Car Show

 

9.15.13:  8:40 PM

 

I never thought I would see the day when our lives were "normal", but here we are. 

 

 

Davis started middle school, and it's a good fit. He is loving it. His teachers are super supportive and he lucked out and ended up with quite a few of his friends on his team. (Middle school is broken up into teams of 100 kids or so.)  He was looking pretty good on the first day of school.

 

Annakate wasn't looking so hot for the first day of school.  She actually missed the first week (two days really).  After two weeks and three doctors appointments, a chest x-ray revealed pneumonia.  To top it off, she also tested positive for having mono over the past six weeks.  She had to get a couple of shots in her legs, and she was given lots of medicine.  Poor thing.  Just as she was on the mend, this past week, she had to go back to the doctor for a sinus infection.  More medicine. We can't seem to get her well for long. 

 

 

Despite the pneumonia, she was able to run the Ashmore Day kids run.  She did a fantastic job.  She ended up placing first for the girls and third overall.



 

Ashmore Day, our village festival, brought family to town.  I was so blessed to get to spend some time with my youngest nephew. I couldn't help but get nostalgic when I realized that I held my niece, Cora, through the Ashmore Day parade and now I was holding my nephew. . . fourteen years later! Where does time go?

 



 

Davis's buddies joined him for Friends Sunday at our church.  It was a scorcher of a day, so after the boys had sweat through their clothes, we headed home so they could swim.

 



 

One of the highlights to Friends Day was the monster truck.  The boys can now say that they have ridden in a monster truck. 

 

If you look hard enough smack dab in the middle of the choir on the front row, you will see the newest youth choir member.  Yep, Davis is officially old enough to be in the youth choir.  He has joined a fine group of young men and women, who seem to look after him.  They are truly a family of sorts. 

 

Last weekend, we were able to sneak in some family time before Kyle gets into the fields. We took the kids fishing over at Lake Shelbyville.  The fishing itself was uneventful, but the time spent together was amazing.  Davis caught this tiny striped bass.  Kyle caught one too.  Annakate found a dead alligator gar.  Me?  Nothing.

 

 

 

Yesterday, Davis was fortunate to judge his first car show. He knows nothing about cars. The Lakewood Village sponsored a car show to benefit St. Jude's Children Hospital.  Davis was asked to be the guest judge. 

 

I was very proud of Davis because he gave an account of his experience/diagnosis on the fly. I could have never had the courage to speak to a group of people off the cuff - or at all - when I was his age. 

 

Anyway, his top pick was an Oldsmobile. It had swivel seats.  

 

We had a blast and made a lot of new friends.  Several people offered up encouragements and prayers for Davis, which we are always grateful for.

 

Davis has been feeling amazing. He had another chemo treatment at the end of August.  His counts were good; his immune system is healthy.  The only part of chemo that throws him off is his round (10 doses over five days) of oral prednisone.  He is moody and his stomach is always upset.  We all remind him and ourselves that it was pass. 

 

We will keep on keeping on.  We appreciate all of the prayers and support that keeps rolling in.  Thank you a thousand times over. God is truly great, and I don't take for granted one day knowing that each one of them is a gift. 

 

September is childhood cancer awareness month; if I may, I would like to ask you to lift up prayers and thoughts on behalf of all of the children afflicted with such a horrible sickness. In a perfect world, no child would suffer from cancer.  

 

We will keep you posted. 



Back to School Blues

8/14/2013: 11:46 PM

I don't know where to begin.  We have done so much and been a little bit of everywhere over the last few weeks. 

Shortly after I my last post, Kyle and I headed down to Florida for a few days.  It was our first real couple vacation since Davis's diagnosis. We met up with some friends and had such a great time. Kyle and I went parasailing for the first time. I don't know what I was thinking with my fear of heights and Kyle's motion sickness.  All in all, I did awesome. Mind over matter.  Kyle?  Not so much. He had to take a couple Dramamine just to be able to get on the boat. He started getting motion sickness when the parasail turned corners. . . .He kept it together, but the rest of the day was shot. He slept on the beach, while I played in the water by myself.

 

 

At the beginning of the month, we headed back down to St. Louis for chemo. This month was the spinal month. At one point, we were trying to count up all of the spinal taps that Davis has received. Our best guess is around thirteen.  It's kinda sad that something like a spinal tap is routine now.

We discovered that Davis's ANC (immune system) was over 5200!  That was quite a surprise. (Healthy children are at 1500 and above). We knew what that meant. Davis's chemo regime was increased. He is now at 80% of full dose.  If you remember, last year Davis had to take a long break (a few months) off from chemo because his counts remained neutropenic. In order to prevent that from happening again, his team has slowly increased his chemo as his body adjusts to it.

We also discussed Davis's growth. I questioned his doctor as to whether or not the chemotherapy could stunt his growth. Dr. Schapiro told us that the chemo might delay puberty and growth spurts, but as soon as the chemo is out of his system (fall 2015), his body should autocorrect. Davis isn't going to be a giant by any means (Kyle and I are both average height), but there was some comfort in finding out that there isn't any permanent stunting caused by the chemo.

Another good report from Children's.  I guess we will keep on keeping on.

Last weekend, we went up to Wisconsin to spend some time with Kyle's brother and his family. Another great weekend. One of our nephews turned three and our newest addition (nephew) was dedicated at church. We sure love spending time with them.

 

And now school is about to start.  I am looking forward to the routine.  Actually, I'm not.  I love summer. I love the low/no stress environment. But routine is better for my kids.

Poor Annakate.  She has been sick with multiple symptoms (back pain, fever on and off, dizziness, etc) for a week now. We have had her to the doctor twice now, and it looks like another trip tomorrow. So she is going to miss her first day of school.  I reassured her that the first day is the best day to miss because as a fourth grader, she already knows all of the rules and she won't have any homework to make up, but I can tell she's sad.  Actually, this evening in the car, she was so sick, she had lost her spunk. She couldn't muster the energy to respond.  My poor baby needs your prayers. We are thinking (and praying) this sickness is just a stubborn virus and nothing more.

I am praying for the safety and well-being of my children and my students this school year. Please continue to pray for Davis and all those little kids who are burdened by cancer. I know you know but sometimes I absent-mindedly forget how absolutely horrific cancer is. And please remember Annakate in your prayers. I know her health concerns seem rather minute in comparison to Davis's, but I just hate to see my baby sick.

We will keep you posted.

Junior National Youth Leadership Conference

 

7.22.13:  2:50 PM

It seems that over the last year I have been pretty bent on new experiences.  I have adopted this new philosophy that I am a human-doer and not a human-being. So we broke away from our Independence Day traditions and tried some new things.

We opened the boat (Yes, the first time all season) and went out to Mill Creek for the boat parade and fireworks on the 3rd. The temperatures were unseasonably cool, which was perfect for Davis.  Davis can't get in the water due to the possibility of line infections. The bacteria is the water can get into his blood stream and cause a port infection. The heat also affects Davis because of his chemo. He just wilts. So you can imagine the torture of sitting on a boat with the sun beating down on you while your family swims and tubes.  In addition to that, it wasn't until after we purchased the boat that we realized that Kyle suffers from horrible motion sickness.  He will suffer along after a couple of Dramamine, but he is so groggy, he can't enjoy much. Needless to say, we don't boat much anymore.  But this night was perfect.  There was little wake because of the parade, which was good for Kyle; and it was freezing, which was good for Davis. We tied on to family, and the kids played with their cousins.  It was a night that I won't soon forget. 

 

The next day, instead of going to the park, we stayed home and did nothing.  Sometimes I underestimate how awesome doing nothing is. That evening, instead of going to fight the crowd at the public works, we shot off some beauties at Kyle's folks home. We loved it! We "oooo"ed and "awww" ed from the back porch. 

On July 5th, Davis and I headed down to St. Louis for his chemo and check-up. Davis has been hoarse for a few months now, and his oncologist planned to revisit the possible reasons why. After his check-up, it was decided that Davis needed to be seen by an ENT at Children's. It was Dr. Schapiro's and Dr. Huang's belief that Davis might be suffering from vocal paralysis caused by the chemo Vincristine. Somewhat normal side effect. After an ENT completed a check-up on 9th floor in the hem/onc clinic, we were escorted down to the fifth floor to the ENT clinic where Davis received an endoscopy.  It was pretty fascinating. The fed a camera tube through his nose and positioned it right over his vocal cords, and then the doctor started asking him questions.  We were able to watch his chords and his throat move.  The whole procedure took less than three minutes.  The two ENTs performing the test determined that Davis did not have vocal paralysis; he was suffering from inflammation and irritation caused by acid reflux.  Davis was placed on Zantac and given some diet restrictions.  It's only been a couple of weeks, but he is doing much better already.

After the long day at Children's, we headed to The Hill to eat at one of our favorite restaurant.  We love the place, and it's a real treat to go. 

On Saturday the 6th, Davis and I headed up to Chicago because we were going to fly out to Boston early the next morning.  Davis attended the Junior National Youth Leadership Alumni Conference. You might remember that he attended the initial one in Washington DC last summer.

During the conference, Davis spent time in Plymouth, Salem, and Boston. He did some fantastic sight-seeing. He visited Plymouth Plantation, Plymouth Rock, Salem Witch Museum. He walked the Freedom Trail and spent time on the USS Salem.  For his birthday, the whole crew surprised him with a giant ice cream sundae at Hard Rock Cafe. 

 

Davis seemed to enjoy DC more than Boston.  The alumni conference was comprised of seventh through ninth graders and was much more labor intensive. They had three and four hour exploration meetings, which are very similar to school.  Davis wasn't cracked up about working on his vacation, but he managed.

Davis was chosen to give the thank you closing speech for the closing keynote speaker of the conference, Brandon Greene. The faculty advisers said he did a wonderful job.

I wasn't around much. Actually, parents aren't allowed to be around. Independence cultivates leadership, I guess.  I had a mini vacation of my own.  I think I was more excited than Davis was for this trip. I love history, especially American history, so I made good use of my time hitting all of the historical stops I could. I totally looked like a tourist. My camera about my neck, backpack, umbrella, tennis shoes, and one giant map in my hand. I managed to make it to Plymouth Rock. I toured Cape Cod Bay. I visited Old Ironsides on my way to Breed's Hill.  I saw the House of the Seven Gables, and where Alexander Graham Bell invented the telephone. I went to the Salem Witch Museum, and visited Simon Bradstreet's, Paul Revere's, Samuel Adam's graves. And the list goes on and on. One thing I didn't do? Eat a lobster. Can you believe I never got around to it? By day four, I was tired of fighting the Boston traffic and was ready to come home. Davis and I both missed our family.

 

 

 

Kyle and Annakate took the train up to Chicago to meet us.  They headed up early, and Kyle took Annakate shopping. She loved this. They met us at the airport on Friday, and we drove up to Wisconsin to see Kyle's brother and his family. We had a blast.

 

 

This past weekend, I completed my first 5K via the Indianapolis Color Run. Actually, there was some walking (too many people) so I am not going to officially count it as my first 5K. I went with a few friends for some girl time. It was so stinking awesome. No pressure, just pure fun.

Davis celebrated his birthday with family yesterday. It is always so wonderful to get together and birthdays are great reasons to do so. He had a great time. We all did. 

 

It's hard to believe that summer is nearly over. I think the kids and I have done a wonderful job embracing the "work hard, play hard" idea as we have played pretty hard this summer. And in all fairness, Kyle has worked pretty hard and sleeps pretty well this summer. Poor guy. He sure doesn't get to play much. Although we don't show it enough, we are so appreciative of all he does for us.

Davis goes back to St. Louis the first Friday in August. He will have to get a LP (Spinal tap) then. We will also meet with the prosthetic specialist to adjust his port cover, so he will be ready to go for PE when school starts.

I just thank God for good health. Davis is doing so amazingly well. We are just so blessed. Thanks for the continued prayers. 

We will keep you posted.