Close Enough to Perfect Christmas

12/26/2011: 7:45 PM

my poor baby

Well, we spent the last days with enjoying family. We shuffled to a couple of Christmases before Annakate fell sick with the stomach flu on Christmas Eve night. Kyle and I decided that I would take care of Annakate, and he would steer clear. Kyle will still be able to take care of Davis (and Annakate when she is better) in case I become sick with what Annakate has/had. So Annakate was pretty much quarantined to her bedroom, my bedroom, and my bathroom. I hung out with her and avoided Davis as much as possible. Annakate tortured me with baking shows nearly all Christmas Day. She was tickled that there was a "Next Great Baker" marathon on, and she would flip back and forth between that and "Cupcake Wars." Since her illness kept us up until 4:40 AM Christmas morning, we did manage to sleep most of Christmas Day away. She did cry a bit because she had to stay home from church, and she did miss a couple of Christmases with extended family, but she understood why. Poor timing in terms of sickness. I am pleased to report that she is back to eating solids today, and I am feeling quite well myself. Whew!

Davis is so cute. His great-grandmother, Wanda Coffey, asked him to play a Christmas song on his bells set before they opened presents.  Not only did he play a song, he played a few, and he even (without our knowledge, not that we cared) printed programs to hand out before hand. Embracing his need for comfortable clothing, which he thinks is super important, he wore pajama pants, a nice casual long sleeve shirt, and robe to Grandma's.  I wasn't there (at home with Annakate), but I was told that before the night was over, Davis was down to his pajama pants. No shirt. No robe. I guess he took the old phrase, "Make yourself at home" to heart.

I have noticed that Davis has shirked the need to wear a hat in public. He started not wearing a hat at school. He said that no one really cared that he didn't have hair. I tell ya, the kids have been wonderfully accepting of the changes Davis has endured. I love the way that they are blind to his differences caused by cancers. It's like they don't even notice that he is pale and thin, that he lacks hair, that he always wears a mask. Well, anyway, I have noticed that he only wears hats/caps when we tell him to grab one because it's cold outside. I am thankful he is comfortable and confident without hiding his head.

This is the first Christmas break that we haven't spent on a vacation in years, and to be honest, it feels a little odd to be home. Usually, we take the kids on a trip for their Christmas present from us. We have a good time being together, and the get-away is a great renewal. This year, we are unable to go anywhere because of Davis' chemo and low ANC. Even though I am sad that we are here (a constant reminder of why we are not on vacation), I know that we will have years to come to vacation together. One rough Christmas will guarantee many more wonderful Christmases.

We still appreciate your prayers.  Davis will have chemo on Friday given his counts are high enough to begin. We should know something Thursday afternoon/evening.

We hope you enjoyed Christmas with your family and friends, and may God richly bless you.

Christmas Morning

Christmas Morning

Bittersweet Christmas

12/23/2011: 1:33 PM

Mixed emotions yet again. We found out late yesterday afternoon that Davis' chemo was cancelled. His white blood cells and nuetrophil counts weren't high enough to proceed with chemo. His ANC (immune system) was at 566, 66 points above critical. It has to be above 750 to proceed with chemo, otherwise the chemo can zero out the counts, which is a bad thing. The doctors can give Davis platelets and red blood cells if he becomes too low, but the body has to naturally produce white blood cells. There's no help there. Before hanging up with the nurse, she advised us to avoid crowds and keep venturing out to a minimum since his immune system isn't strong enough to fight off an infection.

This news is bittersweet because Davis will be able to enjoy the holiday without the nasty side effects of the chemo, but this also means that Davis is one more week behind on making it to Maintenance Therapy. Plus, I was looking forward to starting chemo over Christmas break to allow time for Davis to adjust  to the new medications. This way, he wouldn't miss a bunch of school. Oh well. If the body isn't strong enough, it isn't strong enough.

Now, let me back up. Last couple of days have been great. We have celebrated a couple of Christmases, and the kids have been tinkering around with their new toys.

Yesterday at Sarah Bush, the lab techs were unable to get a good stick (finger prick) for Davis' draw, so they had to call over the Children's to gain permission to do a peripheral (vein) draw. I remember when Davis would become so upset over a finger prick, and now he doesn't think twice about being poked with needles. Sad, really.

Kyle and Lucy are running partners

Many people have asked what Davis is getting for Christmas. Well, he has been blessed with so much, it is quite a struggle to top what has already been given to him already. We talked to him about his options, and he is pretty set on a Doberman puppy. We have had such great luck with Lucy, our 3-year-old Doberman, so what's one more, right? Davis is ready to assert some responsibility. Plus, I think it will be good for him to have something be dependent upon him. Unfortunately, we haven't found exactly what we are looking for yet, so Davis won't have his puppy on Christmas. He's ok with it, and he knows it is coming.
Thankfully, the kids have and will be getting a few movies and Wii games for Christmas. We will have plenty of things to do to bide our time until Davis' counts recover.

Davis' newly scheduled chemo is for December 30th. If his counts aren't recovered by then, chemo will be postponed yet another week.  We still appreciate your thoughts and prayers, as our journey isn't over yet. We continually pray that Davis stays well, is free of short term and long term side effects, and is healed completely and forever.

Wishing you all a Merry Christmas.

We will keep you posted.

Truly Feeling the Spirit of Giving

12/20/2011: 12:06 PM

What a week! 

Annakate had her Ashmore Christmas Program on Wednesday night. It was quite a treat. The kids do such a great job learning little songs.

Davis had his first band concert on Thursday evening. It was amazing!  Kudos to Mrs. Stanfield who takes a bunch of kids and turns them into fantastic musicians in four months.  Davis plays percussion. He has a pretty good sense of rhythm to begin with, and playing percussion allows him to wear a mask and still be part of the band. He loves it.
And as exciting as the band concert was on Thursday evening, the night of excitement was only beginning. On the way to the band concert, I received a phone call from our second cousin (Kyle's actually, but what is his is mine, right?) Amy Wood. She asked if we could stop by after the band concert because she had something for us that wouldn't keep until Christmas. Naturally, I thought cookies. We arrived at the home of Jim and Amy and family shortly after the band concert. They invited us in and motioned us to the couch. We sat, and the Wood family sat across from us. I was thinking that it was quite a formal feeling for a tray of cookies, but I was up for a little visit as we don't get to spend time together much, so I didn't mind the formality.  Amy pulled out some wrapped cardboard cut-outs and we each took turns opening them. It was over the top. Dinner and a movie for Kyle and me, Wal-Mart gift card with a substantial amount for Annakate, Best Buy gift card with a substantial amount for Davis, and a gift card for gas for treatments in St. Louis for the family. Nope, not a tray of cookies! We were beside ourselves.  Amy shared a story of how she and Tyler (Jim and Amy's 6th grade son) had contacted the radio station WLRW 94.5 as part of their wish granting outreach on our behalf. They had found out that the wish had been granted not too long ago. There was a bit of urgency to tell us because a promotional commercial was going to air.  As generous as the gifts the WLRW were, we were unbelieving touched by the Woods for going out of their way to help our family.  Thank you, Wood family, and thank you, WLRW.

On Friday, Davis played the dulcimer in the Jefferson Christmas assembly. He loves playing the dulcimer. I will be surprised if Davis doesn't find his way into a music oriented career. He says things like, "Mr. Walton let me use the cool tuner today" and it just cracks me up. Davis has even starting writing music again. Truly a sign he is feeling better.

Most of Saturday was devoted to practice for the church Christmas program. I did manage to make Kyle a cake, and we celebrated his birthday a day early.
Sunday morning was the kids' Christmas program at church. If you have never been to an Apostolic Center Christmas program, you are missing out. It is quite a show, and the kids and those that lead them put in a lot of hours to make it awesome. Davis played Joseph and sang a beautiful duet, "A Strange Way to Save the World", with Parrish, one of the young ladies in our church.  Annakate was an ox (a part of which she was very proud) and even sang a little solo (her first). I was definitely glowing with pride. I am amazed at how our children can get up in front of 450+ people, and sing/act for the glory of God and not be nervous or think a thing about it. No stage fright here.

Mary (Parrish), Joseph (Davis), and the ox (Annakate)

"A Strange Way to Save the World"

Annakate and her singing debut

The last couple of days have been a mix of school parties and Christmas rush. Jefferson School had an assembly this morning. The video that Davis and I made together was shown, and the student council presented us with a generous check from the bracelet fundraising that was done between the Jefferson and Ashmore schools. I was too teary-eyed to say anything, but the children and their families are real heroes. And Kyle and I can't figure out enough ways to express our gratitude for the support and care that has been shown to us. It's is everywhere. One might think that after the shock of the diagnosis has worn off and people have found their routines of work and school, that we would see less support and encouragement, but the opposite has occurred. I can't thank people enough for what may seem like little things to them, but are giant blessings to us. For example, a thank you to the parents of the children in Davis' class who keep their child home when sniffles are questionable. Thank you to the people who stop me in Wal-mart to check on Davis and to tell us that they are praying for him. Thank you to the person, unknown to us, who paid our water bill. Thank you to the people who bought t-shirts. Thank you to the parents and community members who donated blood at the Jefferson blood drive. So far, all of Davis' blood transfusions have come from the Red Cross. The blessings never end.

The rest of the week . . .
We look forward to spending time with family this week. It seems that this journey is constantly reminding us about the most important things in life. I think I say that little cliche to myself daily, "The most important things in life aren't things." We know that know more than ever. May God bring you and your family the best gifts of all:  His love, the love of family and friends, peace of mind, and health. I encourage you to mend broken bridges, listen a little longer, love a little deeper, and slow down this Christmas season. Time is something that once lost, can't be retrieved. And I look at my babies who are no longer babies and wonder how I let time get away from me.

Enjoy. May God richly bless you.
We will keep you posted.

A Day in the Life Video

12/16/2011:  9:05 AM

I have been meaning to share this video. I hope it works. Davis and I created a little video to help others (most specifically grade school students) understand what has become part of Davis' routine. This video isn't professional by any means, but we (mostly me) had a great time putting it together. There is a song at the end, and my goal is to create another similar music video with Team Davis pictures.

Just click on the link.

Too Busy to Let Something Like Cancer Slow Us Down

12/13/2011: 2:15 PM

It feels like I haven't blogged in forever.  That's a good thing.

Best of Buds

Davis is doing so well.  We are soaking up every minute of the good days we have been having lately.  Davis has been able to attend school every day since his chemo treatment last Tuesday, and life has felt pretty normal.

Davis had his buddies over Friday night. We haven't been able to have a real get-together at our house with the boys since June, so it was a long time in the making, and it was well worth the wait. Davis had a blast. Besides the Nerf gun war, they kept it pretty low key. Movies and Wii games. Although they don't get the opportunity to play and hang out with each other as they did when they were in elementary school, they just pick up where they left off. They don't skip a beat. Having the get-together was definitely medicine for the heart and soul.
 
Annakate has been struggling with a little something for a few days now. I took her to the doctor on Thursday. A strep test was done, but it came back negative. By Saturday, Annakate had a low-grade fever. We started some antibiotics, and this past Tuesday, Kyle took her back to the doctor. Not sure exactly what it is, possibly viral, but we are doing our best to keep her away from Davis just in case. We have made her wear a mask, and we have them use different rooms when possible. She is on the mend now I find it odd that when Annakate is sick, I spend a great deal of time worrying about both of my children in a way I have never done before.

On Saturday evening, we attended our church's dinner theater. Good food, amazing entertainment. Sunday gave way to Kyle's uncle Randy's retirement lunch. He recently retired from working for the State Treasurer's Office. We are happy to have him closer to home. On Monday evening, we sorted the orange t-shirts. My sister-in-law, Tami Ogden, recruited quite a crew, and we had the shirts sorted in no time. The shirts look awesome - bright orange.

The rest of this week is devoted to staying healthy. I have noticed sickness starting to creep around the schools, and the large fluctuation in temperatures doesn't help. I am so very nervous with the holidays around the corner . . . you know, the gobs of loved ones in an enclosed space. And it seems that when Davis is around families and in homes he has been accustomed to going to (Grandmas and Aunts, etc), he lets his guard down. I will catch him eating olives with his fingers and doing other things of the sort. Most people don't think twice about doing those sorts of things, and most people shouldn't have to worry. Sadly, most of the germs that one picks up are obtained through the nose and mouth, and hands are crawling with germs. People put themselves at risk for infection every time they put their fingers in or near their eyes, nose, or mouth. The doctors have told us time and time again, that Davis poses more of a threat to himself than others pose to him.

Thanks to this crew, t-shirt sorting was only a couple
of hours!

Annakate has her Christmas program this evening, and Davis has his first band concert tomorrow. He is pretty excited. Last night, he was practicing his little snare part and asked me to do the base drum part. The funny thing is that we don't have a base drum, so I had to improvise with my voice, making a sound comparable to a base drum.  It was comical. On Sunday, the kids have their church Christmas program. It is quite a bit to-do as far as kids' Christmas programs go, and my kids love being involved.

I have recovered fully from the wreck. Thanks to all of you who offered up concern. I cautiously drove on the interstate for the first time yesterday and hated every minute of it. Of course, my first time back on the interstate was at night in the fog and drizzly rain. Yep, talk about easing into it. I think the only conditions that could have trumped that would be ice or a blizzard. I couldn't help to find some amusement in that fact that I have already received a bill from the state of Illinois for repairs needed to the guardrail I hit. Luckily, the concrete bridge that destroyed the right side of my car wasn't harmed. I am - was - completely oblivious to wrecks and repairs, because I seriously thought that my tax dollars repaired things like that.  Nope. Learn something new every day.

Davis has been eating so well lately. He reminds me so much of a pregnant woman with some of his cravings and adverse reactions. He eats Arby's curly fries nearly every day. He also is newly addicted to Cheez-its and Eggo waffles. He still won't touch anything cold and creamy (ice cream, yogurt, milk shakes, etc), but he could seriously drink a bottle of ketchup if I let him. Today at lunch, after he downed his second curly fries of the day, I gave him the healthy choices and heart disease talk. It is important that he doesn't develop poor eating habits that will become problematic in the long run. I am excited to see how much weight he has gained the next time we head to clinic. I know if I were to eat what he has been eating, I would be at least 15 pounds heavier. Too bad his metabolism isn't slower and mine isn't faster.

I think we have done a great job of developing coping mechanisms. Obviously, we believe a good sense of humor and prayer helps in situations like these. I am not sure what Kyle does to re-focus himself in the hard times, but I readjust my outlook and attitude by thinking upon the things to come - the things I want to come. Sometimes I try to picture my grandbabies. I imagine a few toddlers bundled up in snowsuits bouncing in. Sometimes I picture what Davis might look like as a teenager or with braces on his teeth. Sometimes I wonder if he will have a favorite deodorant, or I wonder who his first crush will be. I try to picture him playing the piano or drum set at church, changing tempo or taking orders from Sis. Marlo or  Bro. Casey. By thinking on the things to come, it makes now seem like a series of stepping stones - a bridge to the future of better times and more memories.

Davis will head back to Children's on the 23rd. He will start his newest road map, Delayed Intensification. He will be on eight different chemotherapy medications in this three-month round. Four of the meds are new or have only been received once or twice over treatment thus far. We are already praying against side effects as we do not know what to expect from the new medications. Hopefully, Davis will sail through the next three months and coast right into Maintenance Therapy.

We continue to be so thankful for the love and support you have shown our family, especially our son. We continue to ask for your thoughts and prayers for complete healing, no relapses, no long term or short term side effects, and good health for Davis.

May God bless you all.

We will keep you posted.

Smooth Sailing and Shirt Update

12/7/2011:  1:28 PM

contributing some weight gain to lots of cake

Davis did a fantastic job at chemo yesterday. Kyle drove him down to St. Louis, and I took the opportunity to stay home.  It was probably one of the best visits to date. Davis has gained a pound.  55.3 pounds!  Yay! We received word that Davis would be able to back off his medication for the next week or two. We will have a stretch of about a week where Davis will be completely side-effects meds and chemo free.  While they were in clinic, Davis celebrated Christmas early. He came home loaded up with toys and a blanket. He was pretty excited.

Davis gets two weeks off before he starts his next phase. It is called Delayed Intensification, and the name pretty much explains it.  The next round is pretty intense. However, if Davis can fight his way through the next three months (that is how long the phase is), he will have made it to the maintenance phases. Maintenance phase is 2 1/2 years of monthly or bi-monthly chemo. He will still have to take side effects meds and oral chemo at home, but our trips to SLCH will stretch out a bit. It feels awesome to be inching ourselves in the right direction.

Davis will go back to Children's, pending no illnesses between now and then, on December 23. He will receive a LP (spinal tap) along with a mixture of new and old chemo meds through his port and orally. Shortly after Christmas, we will head back down to St. Louis for the dreaded peg shots. Then, we will return to the weekly routine of going to St. Louis on Fridays. I have enjoyed having the chemo spaced out a bit (every ten days) these last couple of months. It allowed for Davis to miss different days. It seems that there are so many fun activities planned on Friday. And although we purposely chose Friday for that reason initially, we didn't know that Davis be so saddened by missing the "fun" days.

Other than that, we have fallen back into a semi-normal routine of nightly homework and the hustle and bustle.

Annakate lost a tooth on Monday. One of her teachers was kind enough to yank it out. By Monday night, she had literally lost her tooth. We looked everywhere.  She cried buckets. Even though she knows that the tooth fairy isn't real, she still buys into the novelty of it. And she refused to accept her dollar until that little tooth was under her pillow.  Luckily, Shane, her cousin, found it in her backpack on Tuesday. Thank Goodness.  I was pretty sure I had sucked it up in the vacuum, and I was dreading the dig through the vacuum cleaner bag. 

The house is looking a bit more Christmasy every day. The tree is up but not decorated, and the cold weather has encouraged trails of stalking caps and gloves everywhere.  I don't feel ready for Christmas yet. Not to whine, but I am still waiting to finish my summer. In some ways, it feels like we were robbed of summer because of the diagnosis. And not to perpetuate a stereotype, but teachers and kids live for summer vacation; we are no exception. I know that we will have plenty more summers to play away, but still. . .

The t-shirts are in. Yay!  Well, kinda. Let me explain. There was a bit of a mix-up - an easy mistake - and the company from which they were ordered accidentally printed the incorrect color. No worries. Since the mistake was theirs, they were kind enough to reprint them in orange, the nationally recognized color for Leukemia Awareness. I am not sure when the orange shirts will be in, but we will be sure to get them to you as soon as we can. Sorry for the delay.  We are still getting the last of the first order of deliveries out.

Prettiest model I've ever seen

With that being said, if you know Mandy Hanner, please pass along a thank you. The t-shirts were her idea. She was in charge of all of the organization, promotion, and distribution of over 500 shirts!  And she did this all while raising a family, working a full-time job, and working on her practicum for her master's degree. She has been quite a blessing to us.  And thank you to all of those who ordered shirts and all of those who helped Mandy (Jill Shrader, Ashmore School, and many others). I melt at the outpouring of support for Davis. We always joke that he thinks he is a celebrity of sorts. I think that all of those Team Davis shirts out there may confirm his beliefs.  :)

I would like to do something special for Davis - something to encourage him through the tough times. If you ordered a Team Davis shirt, or even if you didn't and would still be willing to take a photo of yourself, please feel free to take a picture and email it or mail it to me. I would love to put it in a slide show set to music for him. I think it would be a nice reminder of all of those who think about him everyday.  Please let me know if there are special instructions (a picture that can't be posted on the internet, etc). Children are very visual, and I think that the slide show could be quite an encouragement to him.  My email is abcoffey77@gmail.com and my address is 9208 N Co Rd 2270E, Ashmore, IL 61912.



We will keep you posted.

The Heart of Christmas

11/5/2011:  11:15 PM

I don't know if you are familiar with the Dax Locke story. If not, I think you should be. This little boy from Washington, Illinois was diagnosed with Leukemia (AML, Davis has ALL) when he was a year old. His illness transformed the little town as the community pulled together to bring Christmas - early - to the Locke family. 

Despite being torn about doing so, I watched the movie based on the Locke Family experiences, "The Heart of Christmas". It paralleled so many of the experiences and emotions that we have felt on our journey. Please let me be clear; Davis's prognosis and treatment is much different from that of Dax's, but I could identify with so much of what Dax's mother conveyed through her blog (It was narrated in the movie). The movie is a bit of a tear-jerker (What movie about a child with cancer isn't?), but I noticed my tears were flowing because the medical language and acronyms were too familiar, and when the doctors and the parents were talking, I knew what it meant; it didn't sound like foreign jargon. I could identify with her comments about the goal-oriented optimism that abounds on pediatric oncology floors everywhere and the development of my new superpower to see germs.

But beyond the story of a family on its journey, it is about a community that cares and loves an ordinary family with an extraordinary need. And we have felt that ten fold. It seems as though nothing is impossible when we are backed by the saints and warriors who fight with us. We can't thank you enough.

This movie - this story - was a great reminder to us that more needs to be done to end Leukemia and childhood cancers.  And as much as research and resources are constantly in need to offset the search for the cure, prayer for healing (physical healings, healings of broken hearts) is just as much in demand.

Matthew West wrote a song, "The Heart of Christmas"  in memory of Dax Locke. I will attach the link. The link tells a bit about the Locke story and gives you a place to click on the song and video.

The Heart of Christmas by Matthew West 


But I strongly recommend the movie.

I am not sure when it airs again, but I watched it this evening on GMC channel.

********

Davis's counts were ok today. His ANC, which was over 4000 last week, had dropped to 1116. Healthy kids are above 1500.  Platelets were still low but high enough to proceed with a modified dose of chemo tomorrow.  The chemo has been scaled down a bit due to the major counts hit last week and mouth sores.  Although Davis no longer has mouth sores, the doctors don't want to repeat the dosage that was too strong and caused them to begin with.

Davis still needs to gain weight. His appetite has picked up quite a bit (answer to prayers) but the weight isn't holding. He only gained 4 ounces last week.  Our goal at the end of October was to gain 10 pounds by Christmas. At the time, it seemed possible. I think seeing him in this nearly emaciated state really bothers me more than some of the others things we have experienced. It is a constant reminder of his illness and how fragile he is. I often find myself wondering how he would be wearing his hair had he not lost most of it or if he would have put on some height like many of his friends have. I look back at pictures and sometimes struggle to remember when he looked so healthy and strong. I know Davis will be grow healthy and strong, and that one day, we will look back at the pictures of this journey and struggle to remember a time when Davis was so thin and fragile . . . I am looking forward to it.

After tomorrow, Davis will get a couple of weeks off. He will start a new phase of chemotherapy right before Christmas. The timing isn't all that great, but at least we will be inching closer to being in maintenance. And one not so good Christmas will help to ensure many, many more.

Unlike so many children undergoing chemotherapy, Davis has remained in school. He does miss days for transfusions and chemo treatments, but he has maintained a sense of routine. I am so grateful for it. Davis' overall health is so much better when he attends school.  Being around friends and normal 10-year-old stuff has healing properties of its own.

Kyle will be driving us to St. Louis tomorrow. I am amazed about how apprehensive I have been about getting behind the wheel since the wreck. I am sure it is only natural. I definitely have a bit of anxiety while driving.  Today, I was amazed at the number of people flying by me on River Hill.  It seemed like they were all going super fast.  It didn't take me too long to glance at my speedometer, and I noticed I was going 48 mph. Oops. No wonder it appeared they were going insanely fast, I was crawling along during the morning rush hour.

We thank you for your support, encouragement, and prayers. Always.

We will keep you posted.