Monday, June 18, 2012

Extraordinarily Normal Week

6/18/2012: 8:20 AM

I really can't remember everything that has happened over the last week. It has been pretty extraordinarily normal around here.

Even though I had pork chops marinating in the fridge on Monday evening, we packed up the cooler and decided to head out to the lake for supper. The water was so calm and serene; it gave the appearance of glass. I think we were the only ones out there give or take a few fishermen. Anyway, we were only out there - long enough to eat and coast around a couple of rounds, but it was a refreshing twist to our normal supper routine.


We spent an evening with our friends, the Boswells. Kyle learned about ultralites, while we had some good old fashioned fun petting horses, chasing wild kittens, playing with their dog, and visiting.


The ninety degree heat has found its way here, and we have found our way to the pool. The kids will swim three or four times a day.


On Saturday, Annakate and Kyle attended a father-child karate class. Kyle really had quite a workout. Annakate was grinning from ear to ear the entire time. Two things she loves together at once.


This morning at church, Kyle was presented the "Father of the Year" award. It was a complete surprise to him. To make it all the sweeter, Davis gave a speech about his dad before the entire congregation. I am so amazed at how comfortable Davis is with a microphone in his hand. No fear. Kyle has such a tender heart (and was a bit of a weepy mess) and was completely honored by this.  It was tough keeping a secret of this magnitude, but we pulled it off. It was so moving that the pastoral staff and the saints of our church honored Kyle in such a thoughtful and memorable way.




I have to admit that it feels a bit awkward to not write about blood work numbers or ANC or weight loss or hospital stays or chemo side effects, but they simply aren't a concern as of right now. I think one learns very quickly when dealing with cancer that it is one step at a time. The scope of view is very small. No need to worry about tomorrow or the next day. So the here and now is all about summer fun, and we are embracing every minute of it.


Thank you for your continued support and prayers. God is the best, and you are all so wonderful.

We will keep you posted.

Monday, June 11, 2012

Eleven Months to the Day

6/11/2012: 9:15 AM

We spent most of last week in Branson with Kyle's family to celebrate my in-laws fortieth wedding anniversary. Fifteen of us shared a condo. Kyle fell ill with a little virus or something and spent a great deal of time in bed. Poor guy. The rest of us had an amazing time.

We ate at Lambert's on the way down to Branson.

Go kart riding kept the kids cool for a bit.

Putt-putt fun. Kyle and I tied for first. He claims
it was the worst game he ever played and the
best I ever played. No hurt feelings here, I couldn't
agree more.

We rode a Duck, basically a bus that can drive in the
water. The views were breathtaking. Davis, Annakate, and
Papa Gary took turns driving the Duck in the lake.

All of the girls (and Gary who took Davis' ticket bc he bailed) went to see
Joseph. It was amazing. Personally, it was my favorite.
Lots and lots of swimming.
We spent some time at the Landing. Kyle and Davis waited in line for ice
cream for over thirty minutes!
 We had to cut our Branson trip a day short to head to St. Louis for blood work. We then spent the rest of the day shopping, eating, and swimming at the hotel. Davis had to fast on Friday, so we ate a lot on Thursday to make up for it.

We went to the outpatient lab at SLCH. It literally took two minutes
to get a draw. A year ago, Davis would have been flipping out
over the needle. Now, it's old hat.
Davis was accessed and given an anti-nausea med through his port. We were then sent down to the APC (Ambulatory Procedure Center) for his spinal. Since he wasn't quite out of his anesthesia, Annakate wheeled him up to 9th floor for the rest of his chemo, a breathing treatment, and a doctor's check-up after the procedure.

waiting around in the chemo lounge

sleeping peacefully under anesthesia
 Davis' counts have been holding strong. His ANC (immune system) last month was over 3000, and this month, it was 2010. I couldn't have been more thrilled. This means that Davis has a healthy immune system. My worries about riding a school bus and going to school in the fall had subsided a bit. Previous to the doctor's appointment, we were told that Davis' chemo was being increased. The reason for the increase was that his counts were strong and his immune system was healthy. What? That's right. We were told that they would like his ANC to hover between 1000 and 2000. The chemo is still killing cancer cells, so his immune system still needs to stay compromised.

Kyle explained it to me so well. I can't do his explanation justice, but he compared this round to putting on herbicide. The idea is to hit a weedy patch with herbicide to kill the weeds, then hit the same spot each year for a few years (even if it appears that there are no weeds). Eventually, all of the weed seed is eliminated, and weeds no longer grow there.

Davis' weight dropped a bit, but the doctor is very pleased with how well Davis looks. There was very little new news at this appointment.

The clinic celebrated with donuts. Davis picked out a sprinkle one.
Kyle had to carry it around for hours until after Davis' procedure.
After Davis' spinal tap, the nurse warned me that he might be sore and would need pain killers because the anesthesiologist chose not to numb his back with lidocaine (personal preference). We were not surprised when we made it home Friday evening and Davis was complaining of back pain, so we gave him some oxycodone. Saturday morning, he was still complaining. I took a look and was beside myself. We are used to seeing a little needle hole and a little bruise. I was not expecting ten holes, bruises, and some scratches. I am not sure what happened or why we weren't informed of the multiple needle attempts, but I hope to have an explanation by the end of the day. On the bright side, Davis is feeling fine now.

spinal pin cushion
 Friday marked eleven months to the day that Davis was diagnosed. Ironically, we met with the doctor who delivered the news of Davis' cancer. I hate how there will forever be a "before and after" time in our lives. The date that changed nearly everything. A new anniversary. I hate it that it is so close to his birthday. It is almost like cancer diagnosis day is a bigger deal than his actual birth.  I hope that years from now his birthday is the only thing we mark - we celebrate. On the other hand, birthdays are all the more sweeter. There is no doubt that without the diagnosis that came when it did (just shy of a miracle from God), Davis would not be with us. He wouldn't have an eleventh birthday; he wouldn't have made it to sixth grade. He wouldn't play the drums or piano; he wouldn't sneak in an extra hour of DS playing after he has been tucked into bed.

We are so blessed. And I am saddened that it takes something as horrible as cancer to constantly remind us how blessed we are. I think of a hundred little things that it has taken to get us to here - still grounded, still happy, still fighting. A card in the mail, a glance down the paper plate isle at Wal-Mart and seeing a Team Davis t-shirt, an email from a co-worker, a visitor, a complete stranger -- someone who knows someone who knows us -- asking about Davis, the reminder that someone is praying for our family. Hundreds of little things. There were times that it felt that cancer dictated our lives; we were owned by it. But little by little, we have regained our grasp. It was so gradual, I didn't even notice until I think and look back on the last eleven months. I know we still have so far to go, but I am hopeful all will go well. We depend upon your support and prayer so much. We thank you for remembering us as we trudge along.

We will keep you posted.

Wednesday, June 6, 2012

Before and Better

6/6/2012: 12:53 PM


November 2011
June 2012



Thanking God daily for seeing us through on this journey. We are so blessed.

Saturday, June 2, 2012

Sizzlin' Sun Weekend

6/2/2012: 10:30 PM

We had a blast over the holiday weekend. We headed down to Mill Creek for a few days of camping and boating. I was nervous about this trip because Davis can't tolerate heat very well, and it was supposed to be in the 90s, and he can't be in the lake water because of the risk for infection. We managed to make the best of it, and I think everyone had a great time. Kyle may not have. He gets motion sickness and has to take a lot of Dramamine. Poor guy.


We took a big risk and allowed Davis to use the tube as a raft to float over to the shore and walk around. He seemed to have fun doing this, and it was a nice alternative to just sitting on the boat while everyone was in the water.

Although boating wasn't super fun for Davis, he still made the most of it. I think his favorite part was just riding around and catching the other boats' wakes. Plus, it kept him cool.


Annakate had a fantastic time. At the beginning of every year, she is afraid to get in the water. She had her hair braided, and while swimming, she started panicking. She screamed, "Mom, a catfish!" Well, it was her braid floating by her face. She definitely provided some great entertainment. It takes her a bit to warm up, but once she finds her courage, she's fine. She's content just to swim. She loves the water. 


We like to camp. Well, let me rephrase. The kids and I like to camp. It's not really camping. It's like living in a tiny house on wheels. We watched movies every night and cooked smores in the microwave. The kids played at the play ground and rode their bikes around, and we played Wii too. 

Davis continues to feel well.  This Thursday, we will have bloodwork done to determine counts going into chemo on Friday. We don't expect to see low counts. The prednisone he takes boosts his white count which raises his ANC (immune system count). On Friday, he is scheduled to have an LP (spinal tap) to put chemo into his central nervous system. He will also receive port chemo and a breathing treatment to prevent lung infections. One of the perks to all of this chemo is that he is waived of receiving his immunizations to enter 6th grade. Not a real fair trade-off, but he was happy to hear it.

With the exceptions of medication and a handful of limitations and concerns, Davis' life and our lives feel normal again. We have returned to a pace we are used to. Actually, I think we are moving at a bit of a faster pace to make up for the summer we missed last year. We are careful not to take this time - this summer - for granted.

Thank you for all the encouragment. We love the comments about how awesome Davis looks. When Davis was in the thick of treatment and looked so unhealthy, my heart would break over and over again. I would often wonder if the cancer didn't kill him, the chemo would. I just thank God that we all found the strength to make it through those really hard times, and I am so thankful that his health is returning. A second chance at life.

Thank you for all of the prayers. We continue to love and appreciate them.

We will keep you posted.

Friday, May 25, 2012

Welcome Summer Vacation

5/25/2012:  9:30 AM

I am sure that you have guessed from the lack of posts that things around here have been busy. My OHS seniors graduated last weekend, Kyle spent four days in Tennessee golfing with his friends, and summer vacation started for the kids.

Summer vacation came in a fury. We haven't had one relaxing day yet. I don't mind; each day has been incredibly productive, and everyone sleeps very well at night.

I have been unpacking my new classroom in the new OHS this week.
Annakate and Davis found a new use for my cabinets. They helped some
and played a lot more. I have glitter all over my floor to prove it.
Sadly, Davis quit baseball. I am very disappointed - not that he no longer wanted to play, but that he quit. I am very "old school" when it comes to commitment, I guess. Anyway, he had a list of a hundred reasons, and most sounded quite like excuses to me. A couple of reasons were pretty relevant: chemo causes an intolerance to heat and sun. He wilts in the heat. And playing baseball is pretty hot and one's almost always in the sun. The bottom line is that his heart wasn't in it, and it was torture for everyone to make him finish the season.

Eliminating baseball has freed up our schedule a bit. Annakate still has her commitments: various ball camps and Taekwondo.

She's officially a yellow belt!

Healthwise, Davis is doing wonderful. He looks great and feels great most of the time. He has energy - something he didn't have this time last year. His appetite has returned, and we are hoping that this summer brings on some muscle and ten more pounds.We don't have to head down to St. Louis for chemo until June, and we love the long stretches of time in between.

More bluegill.
With Davis being prone to infection, we constantly have to monitor him for fevers. What a challenge! With it being so warm outside, he always feels feverish to me, so I am constantly taking his temperature. I am sure he is being so patient with me, just as he is with my camera snapping pictures all of the time. I am sure I will adjust.

Annakate's first bass.
We are looking forward to some family time over the next couple of weeks. Kyle has been working some long hours to free up his schedule some. With farming, there is always something to be done (unless it's February).

The more they fish, the more courage they find. Davis, Annakate, and Parrish
(Annakate's friend) are attempting to remove a hook from a bluegill.
We appreciate all of your love and support  . . . even still. Although Davis is doing so well, we have a constant set of worry and fears that we fight daily. Please remember Davis and our family in your prayers and thoughts. While I am requesting, I ask that you lift up thoughts and prayers for Davis' friend, Cory. He appears to be tolerating the chemo, and his newest tests and scans have came back bearing good news.

We are so truly blessed.

We will keep you posted.


Monday, May 14, 2012

Ten-Year-Old Boy Thing

5/14/2012: 11:43 PM

We ended up getting Davis' CBC on Tuesday. I took him to our local pediatrician's office because he itched all over and had no rash. Apparently, unexplained itching can be a result of a liver malfunction. Since there was no rash and no new allergy explanation, it was important to rule this out. The pediatrician's office and Davis' St. Louis oncology team discussed it over the phone and thought it would be a good idea to go ahead and get a CBC and CMP to see what was going on. The results came back later that day. While his liver levels were high for a normal child, they were acceptable for a child who is pumping chemo into his system on a daily basis. The onc nurse did say that his uric acid levels were high, and the team would discuss it and speak to me about it on Friday. In the meanwhile, Davis was to continue taking allergy pills and use Sarna lotion for the itch.

The itch still continues. The hem/onc doctors don't have any answers and are confident that it has nothing to do with liver or kidney function. The next step is to see a dermatologist.

Davis'  CBC looked great. His counts are relatively high . . .well, higher than we are used to seeing them. His ANC (immune system count) was 2600, and anything over 1500 is considered healthy. Yay!  with this news and the way he has been feeling, Davis has been taking a bit more risk. He is going out in public and attending school with no mask. Davis is far more protective of himself and the doctors and we are (at times), and I know that he continued to wear a mask long after we didn't ask him to anymore. He still continues good hand washing, but I haven't wiped down his school desk and chair in a couple of weeks. Baby steps to normal, I guess.

chemo time with Kathy
Breathing treatment went faster this time.
The deeper the breaths you take, the faster it goes.
Friday's chemo was pretty quick. Davis was accessed and received his Vincristine in record time. We had to wait a bit for the reverse air flow room so Davis could do his breathing treatment. We had quite a wait on his oral chemo and side effects meds at the pharmacy (The pharmacy staff are so kind, but terribly slow, but I bet messing up meds like chemo could be horrific.), so we headed over to The Hill and found a quaint patio restaurant to fill our empty bellies. Davis has been eating uncontrollably lately. I think it is a ten-year-old boy thing. He ordered two entrees and ate my salad. I couldn't help but think that six months earlier we were talking about a feeding tube.

Entree #1 at Favasso's

In June, Davis will have finished his first of eleven rounds of this chemo phase. This phase is made up of eleven three-months rounds.  So let the count down begin. In June, we can safely say we only have 30 months of chemo left!  It sounds better than saying that we still have 2 1/2 full years of chemo left.

In other news, Annakate was honored at the Children's Art Exhibit at Tarble Art Center on Saturday. We are so proud of her. And Mother's Day was pretty peaceful. I spent the entire day with my babies.

The name of the piece?  Tie Dye Henna
Oh, I nearly forgot. Davis had a band concert on Thursday evening. There was quite a chaotic meltdown thirty minutes before performance time. Davis had misplaced his sticks (he plays percussion). Actually, he had misplaced them several days earlier. He decided thirty minutes before that he needed to find them because as he put it, "I can't play without them. No other sticks fit me." It sounded absurd to me, but I have long given up trying to reason with a near-hysteric child. He had resolved to the idea that if he didn't find the sticks, he couldn't play the concert. After turning the house upside down, coaxing him into the car, looking in his classroom, enlisting the help of the band teacher, rummaging through every drawer in the band room, the sticks were found with minutes to spare. Catastrophe averted. My nerves were shot, but nothing like an amazing band concert to right my flustered thoughts. I am not being biased here when I pass along kudos to Ginger Stanfield for turning those little kids into sheer geniuses with instruments.

Davis playing timpani

This week proves to be a busy one. Ball games. Taekwondo belt testing. Talent shows. School picnics. Retirement luncheon. And of course, my Oakland kids are graduating. We are so thankful and grateful for slow recovery of Davis' health and our old lives. Although the journey continues, I often look back over the last several months and question how we have survived all of this. Well, we know how. . . I have never really hated anything or anyone in my entire life. Truly. But I HATE cancer. I don't hate the blessings and the learning that has come from it, but the cancer itself - I hate it.

See those red sticks?  Those are the ones.
Boy and sticks have been reunited.
All smiles.
I can't remember what my last update on Cory was, and so many of you ask because I know you are thinking of him and praying for him. He underwent a lung biopsy last week. The results aren't back yet. His bone marrow is cancer-free. Yay! He starts some pretty nasty chemo this week, so please pray and pass along a positive thought for him.

We still pray every day against infections, long term side effects, organ damage, secondary cancers, and relapse. I have really picked up the prayers for Davis' safety. Now that his health and energy levels are beginning to return, he is far more rambunctious. He acts like . . . like. . . well, a ten-year-old boy. He hurt himself on the trampoline on Saturday. It looked nasty. His response, "Ahh, I'm just checkin' out my platelets." Bruises are something we can live with. An injury to his port, we cannot. I just ask that God keeps Davis safe, so he can continue being a ten-year-old boy.
We will keep you posted.

Monday, May 7, 2012

Fishing Advice From an 8-Year-Old

5/7/2012: 9:55 AM

We are easing into summer for sure. Davis' Friday night ball game was quite a nail biter. Despite that he struck out three times, he was still pretty happy because he was playing against one of his best buds, Drew.

Davis at bat. Drew catching.

We spent most of the weekend camping. We had a blast. We did a little fishing. Well, I did most of it. I caught nothing. On the bright side, I did feed quite a few fish before I switched to a lure, and then the fish weren't interested. Kyle's sister and family were camping about four or five places down from our camp site, so the kids loved running back and forth.

On Sunday afternoon, we tried our fishing luck at a different pond near the farm. Again, I had no luck. A couple nibbles here and there. Annakate caught her first fish five minutes after casting her rod. She was too cute.  As I helped her reel it in, she was giddy with glee. She told me her fishing secret, "Mom, it worked! I said a little prayer that I would catch a fish, and I caught one!"  We continued with our fishing, and she kept reeling them in. Since they were all bluegill, she was beginning to think she was catching the same fish over and over again. I assured her that they were all different sizes, so surely they were different fish. A half of an hour later, I was still empty handed (I did have to stop and help her quite a bit.) and she mumbles from behind me, "Maybe you should say a prayer." And with that, Davis took my pole over and caught a fish. Hmmm. I was content to see them so thrilled with their catches.  It made for a relaxing afternoon.

Fish #1 of 3
Annakate is extremely afraid of fish. She worked up
some courage to try to take the fish off of the hook herself.
She wasn't able to do it, but kudos to her for trying.
Davis developed a rash last week. It looks like some sort of heat rash or hives. I have been pumping allergies pills into him. I have also done all of the things I know to do . . . watch what he eats in case it's a new developing food allergy, wash all bedding and clothes in mild detergent in hot water, etc. The rash seems to come and go, but the itching is still pretty intense even when there is nothing visible. It could be a side effect of his chemo and the heat or sun, but I think that the chances of that are rare because his chemo dosage is fairly low. I will call the Children's clinic today and see if Davis' team has any better answers or solutions.  I guess the timing couldn't be better. Davis is scheduled for chemo on Friday, and if he can hold off, the doctor can take a look at the rash then.

Davis and his catch
Yep, Davis will go and get his monthly CBC on Thursday, and if all looks well (and it should), we will head down on Friday for chemo. This should be a fairly easy chemo day. Davis will be accessed and have a Vincristine push in his port, and then he will have the nasty breathing treatment. Although Davis would prefer to have us crush the antibiotic to prevent lung infections for him to take twenty-four times a month, we drew the line and insisted that he do the breathing treatment. It saves time and fights over medication. Plus, it's one less medication he has to take every week.

In June, chemo will be a bit more intense. Davis will have an LP (spinal tap) to place more chemo in his spine to protect his central nervous system from cancer.

Update on Cory. . . It appears the latest round of chemo is working. There was no cancer present in his latest preliminary bone marrow biopsy test. The doctors are taking a look at some other things (specifically a lung tumor), but for the most part, his family received good news on Friday. Please keep the positive thoughts and prayers flowing for this little guy and his family.


And always, I ask that you remember Davis and the rest of us in your thoughts and prayers. Davis is looking great and feeling pretty well. We know that your support and God's goodness are responsible. We never forget for one day how truly blessed we are. Never.

We will keep you posted.