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.

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.