One Year Ago Today. . .

7/8/2012: 3:01 PM

At 5:00 PM, it will be exactly one year ago that our lives were turned upside down. . . our hearts were squeezed and we were left stunned . . . our journey began. Davis was diagnosed with t-cell acute lymphocytic leukemia exactly one year ago.  I sit here and reflect on how different our lives are now -- better in some ways, scarred in others. I am amazed at how we have become stronger out of necessity and how we have been forced to grow beyond our believed limitations. I am deeply saddened that my children have been robbed of normal, care-free childhoods, and I am weary as our walk with cancer continues. I want it so badly to be over.  But every day I find a new joy in this journey, and our cups runneth over with the blessings brought forth by God and others. Thank you to all of you who walk by our sides. This journey feels so long, but we are comforted knowing that we are not braving it alone.

Another wonderful week.

 We enjoyed a bit of time at Moreton Park before the heat became too intense. We spent a relaxing day at home before heading to Casey for the fireworks. They were spectacular.

Davis had blood work and a metabolic panel done on Thursday. All of his counts were in normal range for the chemo he is receiving. The doctors raised his chemo this past month because his ANC (immune system) was getting too strong. Last month his ANC was over 3000, and this month it was where the docs want it: 1575. 

Annakate is grossed out by the blood draw. She can't look.

Davis will receive a repeat liver and kidney test this week to check his bilirubin, AST, and ALT levels. The levels jumped quite a bit from June to July. The doctors want to make sure that the levels have plateaued and aren't increasing. While they are still in normal limits for a child receiving chemo, they are still being monitored closely. (Side note: the liver and kidney levels can be up to twenty times the upper limit of normal.) The doctors begin to closely monitor kidney and liver levels at five times the upper limit of normal. Davis isn't quite there yet. Davis' AST was 81 (normal limit 10-34) and his ALT was 170 (normal limit 7-56 usually), which was up from 108 the month before. As a mom, I am concerned, but the doctors says there is nothing to worry about yet.

Chemo was a go on Friday. Davis brought a couple of his best buds along this trip. We turned chemo day into a St. Louis birthday party trip.

Drew, Davis, Annakate, and Wade waiting on the doctors

Quick chemo. Davis received Vincristine via port push and then a breathing treatment of Pentamidine to protect him against bacterial and fungal lung infections. 

While we were waiting on the breathing treatment to finish, Kyle and Annakate snuck over to 9West to visit with Cory and his family. Kyle said that Cory was awake and playing when they were there. They enjoyed a nice little visit together. Please keep praying for this amazing family.

Davis has been complaining of leg pain, more specifically ankle pain, for a little over a week now. I assumed it was due to the chemo drug Vincristine because leg joint pain is a side effect. Dr. Schapiro gave him a look over and discovered swelling and tenderness near the ankle. She believes that it is a strain or sprain of some sort, and Davis has been ordered to the RICE (rest, ice, compression, elevation) method for a couple of weeks. We have no idea how he injured himself, and frankly, we are struggling to keep him off of it. He tolerates the ice and doesn't seem to annoyed that he is limping everywhere. He is pretty good to sit for a while unless there is something better to do.

Once chemo was over, the party started. After some hotel swimming and lounging, we went to Davis' favorite restaurant. Kobe's Japanese Hibachi Steakhouse. Umm. Not sure if the boys liked it as much as Davis does, but everyone left full.

Quite a show!

We headed over to an awesome sports complex we were sure the Davis and his friends would love. They played laser tag. They climbed rock walls. They played dodge ball. They ran obstacle courses. Annakate kept up with them every bit of the way. Even though Davis could barely walk at the end of the evening (ankle pain), he didn't complain one time.

Needless to say, everyone slept well.

Krispie Kreme

Davis will be turning eleven in a couple of days, and I thank God for every day that He has given me with him - even the bad ones. On the car ride to St. Louis, Kyle and I were trying to do the math as to when we would be done with chemo.  2015.  Seems like such a long time from now.

Thank you for your continued prayers and positive thoughts.

We will keep you posted. 

Urgent Prayer Request

7/2/2012: 2:34 PM

Prayer Request: Cory (the ten-year-old we roomed with when we were diagnosed) had quite a set back this weekend. Posted from his mother's blog, Cory suffered a stroke, was airlifted to SLCH, and is now undergoing testing. He is now out of ICU, but the family is waiting the uncertainty that lies ahead. Please earnestly pray for Cory. He (and his family) really need their miracle right now.

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I feel so guilty recounting our week know how horrible the last few days for Cory's family have been. But I know that the good days are a gift, and I feel so blessed to make use of every day we are given.

This weekend, we went camping and boating at our usual spot. Kyle's family went too, making camping twice as fun.

It was way too hot to cook on an open fire. We used our new pizzazz to cook. I love this little machine. We had kabobs one night, and steak (yes, steak!) the next. 

My brother-in-law took part in the Mayhem race (race with an obstacle course) being held by the park. We stood in strategic locations along the race path to cheer him on. As we were waiting, my nephew went to grab a frog at the edge of the water. Much to the children's surprise and eventually to our entertainment, it was not a frog.  Kyle, along with the people waiting with us, were convinced that it was a water moccasin. To end the discussion, I googled it. Inconclusive. Kinda looked like a moccasin, kinda looked like a dozen other water snakes too. My guess . . .Eastern Milk Snake (even though they aren't really water snakes.) 



We did boat for awhile, but it was far too hot for Davis. We shuffled him to the shore line on the tube, and we played there for a bit. There is only so much you can do on a rocky shoreline, and Davis was done braving the heat early on. He ended hanging out with his Grandpa and Grandma at the camp site. 

Kyle was able to control his motion sickness very well this time. Two Dramamines. He spent the rest of the afternoon and nearly all of the evening and night sleeping. Poor guy.

Annakate is so full of energy. After we returned from boating, she made use of the remainder of day light by riding her bicycle and sliding on the slip-and-slide offered at the park.

Davis's birthday is quickly approaching, and therefore, our diagnosis date anniversary is upon us. It is hard to believe that it had nearly been a year. It some ways, it seems like yesterday, but in most regards, it feels like we have been fighting cancer forever.

Davis will have chemo this Friday. It should be an easy one. A breathing treatment and some chemo pushed into his port. Please pray that all goes as it should. And please pray for Cory.

We thank you a million times over.

We will keep you posted. 

How Much Summer Can We Cram Into These Weeks?

6/28/2012: 4:09 PM

I can feel the summer ticking by already. But I can safely say that this is the first summer I don't feel we have wasted. We have been cramming enough summer into every day to make up for the lack of one last year.

Last week was the week of slumber parties. The kids were barely home. When Davis was home, Annakate was spending time with a friend, and when Annakate was home, Davis would be gone. We managed to find a night to go bowling. The kids had a great time. Thank goodness for those bumper lanes.


She wasn't always this happy.



We hauled ourselves to Tennessee to visit my family. It is such a long drive, but the visit made up for it. We went to a small water park on Saturday. It was perfect. Davis and Annakate spend most of their time in the wave pool.

Annakate and Grandpa Fanello

Davis started small on this water slide.

Eek! Can you believe that Davis went down this slide! 
You can hardly see him, but he's standing in line on the staircase.
I was a nervous wreck!  He loved it, but wasn't quick to do it again.

On Sunday, we indulged in "Fiddler on the Roof". Davis whined about not wanting to go initially, but he loved it. In fact, I still catch him humming a couple of the songs.  The rest of Sunday and Monday was spent on the slip-and-slide. My dad and Kyle went golfing on Monday. I was honored to go slipping and sliding with the kiddos. I knew I was in trouble when Annakate yelled, "Wait, Mom! Slide's not quite ready!" and then she proceeded to dump and smear about a cup of liquid dish soap all over the slide. I ran . . . I slid . . . I landed . . . on the ground. Yep. The first attempt - missed the water. Needless to say, I provided some prime entertainment for Davis and Annakate, and I was surprised that I wasn't too sore the next morning.

 We squeezed in some Guitar Hero. Something no one in our family had ever played. Kyle and Davis caught on pretty quickly. I can't say the same for Annakate and me.

Upon returning home from our Tennessee trip, we have spent a great deal of time with friends and in the pool. I guess that's the recipe for summer fun.

Monday night brought forth a near miraculous event. Well, not really, but it felt like it. Davis swallowed a half of a pill!  I think he surprised himself even!  We were so tickled that Davis, Annakate, and I did a happy dance right there in the kitchen. Sadly, the other half of the pill wouldn't go down. So after five attempts, we called it and crushed a new half pill. I am thrilled that we are one step closer to pill swallowing.

Davis is doing so well, and I have to admit that there are times that I forget about everything related to cancer all together. I love pretending that this past year didn't happen (not that I want to squash our blessings, but that I want to just ignore the worry and stress of it all), and with Davis looking and feeling so well, it is easy to pretend for a little while. I still find myself praying basically the same prayers over him every night when I tuck him in: no relapses, no secondary cancers, no long term or short term side effects, . . . I have added to them over time: a spirit of peace, a leader by example. . . And every day, I count my blessings.

Thank you for thinking of us, encouraging us, praying for us. I can't imagine where we would be without you.

We will keep you posted.

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.

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.

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.

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.