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.

The Accident

12/2/2011:  2:08 PM

Davis was scheduled for chemo yesterday, but it didn't happen.  On Monday, Davis thought his hemoglobin was getting low.  When his hemoglobin is low, he experiences tiredness, dizziness, and headaches. He was scheduled to get a CBC and CMP on Wednesday, so we decided to wait until then to see if he was right. By Wednesday, Davis was dragging. I knew that there was something wrong. We went to SBLHC before school for his blood tests. The lab techs were having a difficult time getting enough blood to come out to full the viles, and by the time they would get a tube filled, it would clot and have to be redone. He had to have four sticks to complete the task. He was so drained; he propped his head up on the arm of the chair using my coat and slept.

Around 11:00 AM, I got a call from SLCH clinic. Davis' hemoglobin was low as were his platelets. He would need two pints of blood and a unit of platelets soon.  The nurse gave us the option of coming down on Wednesday and getting started or to wait and do it all in one day in clinic on Thursday. The entire process would take 6-8 hours. I decided I would let Davis decide depending on how he felt. I checked on him at school during the beginning of his lunch hour, and he had withered considerably. I brought him home to rest. After much debate between the three of us (Kyle, Davis, and myself), it was decided that Davis should go to St. Louis that day to get started. It wasn't long after that the nurse called and told us that the clinic felt that Davis should head down on Wednesday. The transfusions would be started in clinic, and he would be transfered over to a room on the impatient side. All of the blood and platelets would be given on Wednesday evening, and Davis would be observed oevrnight.

We made it to clinic around 3:30 PM. Davis didn't realize that he would be admitted until the nurse mentioned that his room was ready. Davis has severe anxiety about staying in the hospital, so I casually neglected to leave that information out of the conversation we had before we headed down to St. Louis. I know, dishonest mom, right? Well, it bought me 2 1/2 hours of peace on the way down to St. Louis, but I still feel guilty.

The set up wasn't ideal. We were given an A side (smaller side with no parent bed) for the night. Actually, I didn't even have one of the foldout chair beds. I had a padded chair in which to sleep, and Davis' bed seemed smaller than usual. I crawled in bed with him at some point in the evening to take a nap (I was functioning on a few hours of sleep because I had a migraine the night before). I was hanging half-on and half-off and using my coat as a blanket and my arm as a pillow. Our roommate, a teenage boy, was quite a snorer, but both Davis and I were too tired to be annoyed.

Other than napping, we passed the evening and night by going on a "mom and son date". We ordered food from a nearby Applebee's. I told him to get whatever he wanted. We went to town: milkshakes, appetizer, two entrees, and a dessert. It was a few blocks away, so I had to walk to pick it up. Walk, no, I pretty much ran there and back because it was so cold . . .and dark . . . and a little creepy. Being a fan of "48 Hours Mystery" can sometimes work against me. I made it back in record time. Davis was waiting on his nightly medicines, specifically his anti-nausea medicine, before he could eat because his stomach was upset. The promised ten minutes wait turned into a two hour wait. Depsite my constant bugging and questioning, pharmacy didn't send it any sooner.  It totally ruined our evening. I sat up our meal in the play room, and I wheeled Davis in. Because he was so nauseous, he couldn't eat anything. He sat and watched me eat. Poor guy.

Davis' hospital stay anxiety didn't go away, and they discharged us at 11:30 PM. He didn't really need to stay. The doctor set it up so we could since we live so far away from St. Louis. We stopped at a hotel in Collinsville for the night. Thursday morning, we checked out and headed over to the Waffle House for breakfast. Davis loved it. He ate most of his plate and then started in on mine. He is such a slow eater. Finally, I whipped out my book and let him take his time filling his belly. An hour later, we were back on the road.

With his full belly and improved blood and platelet levels, Davis was back to sleep in no time. The traffic was flowing, and I noticed an increase in semitrailers on the road. I didn't know if it was the time of day I was travelling or if it was because of the holidays, but there were semis everywhere. I was travelling in a pack of semis and a handful of cars. It appeared we had all set our cruise controls for 70 because we were all moving at the same speed as a unit. We were clipping along between Greenville and Vandalia near the Hurricane Creek bridges when a small black pick-up truck to my right (I was in the left-hand lane) started hugging the white line. I looked to my right and could see him. Our side mirrors were going to bump, so I laid on my horn in an effort to get his attention. I thought since he was looking to his right that he was probably just swerving around a dead animal or debris that was hanging over into his lane. No big deal. However, he didn't head back to his lane. He came over to mine. Very aware that Davis was sleeping in the back seat on the passenger's side, I pulled off - I was forced off - onto the shoulder going nearly 70. I had decreased my speed but didn't slam on my breaks because there were several semis behind me. Quick decision making and a bit of panic took over when I noticed that I was getting ready to slam head-on into a concrete bridge. My other two options consisted of taking the ditch to my left which led to a substantial drop into a concrete-lined embankment which led to the swollen Hurricane Creek or pull back onto the interstate slamming into the guy (Davis's side taking the hit) who forced me off of the road and chancing my luck that no other cars or semis would come into our path given we wreck.

In retrospect, I am amazed at how well the brain works under pressure and circumstances. My thoughts were a jagged mixture of logistics, scenarios, prayers, and pleas. I am amazed at how instinctive it was to protect Davis, and the only panicked thought I had was wondering if it hurt to die, because I was for certain that I, possibly we, weren't going to survive this.

I pulled back onto the interstate going between 55 and 65 miles per hour. I believe my passenger's side front area hit the black truck's back left side, which caused my back end to spend counter clockwise. I tried to regain control of the vehicle and straighten it out, but the hit was too hard and I was moving too fast. I feared breaking too much because I didn't want to lose total control or slow down into oncoming traffic. I was able to keep it on the road for a bit. I did a full spin and and half before Davis's side slammed into the second concrete bridge over Hurricane Creek. The front half of my car was hanging over into left hand lane and I was staring right into oncoming traffic. I tried to move my car but it was hung up on the bridge. I was stuck. Vehicles were quickly maneuvering to get into the right hand lane to avoid hitting me. I immediately took off my seat belt and turned around to check on Davis.

His response, "Mom, what happened?" You are not going to believe this. Davis slept through the whole thing. He woke up on impact. I asked him if he was ok  . . . hurt . . . his port . . . I was talking a million miles an hour. I am sure he thought I was nuts. He said he was perfectly fine, and that is when I felt the sharp pain in my head for the first time. I began looking for my cell phone. Davis had it in the back seat before the accident, and now we couldn't locate it.  We finally did.  By the time I called 911, several witnesses had reported the accident and an ambulance and state police were on their way. We sat there for minutes which felt like hours. A state worker who resembled a scruffy Ben Affleck pulled up in front of my car. He checked on us and told me that he saw it happen but because we were on a series of bridges and couldn't get turned around to come back. He turned the lights of his vehicle on, put on a yellow jumper, and directed traffic on the interstate.  God bless this good Samaritan. I will never be able to thank him properly.

The ambulance and state police showed up about five minutes later. I informed the EMT about Davis' medical situation, and he quickly disappeared. Davis' car door was crushed and the EMT couldn't get it open. I am not sure how he did or what he did, but he was checking on Davis in no time, while the other EMT was seeing to me. I refused treatment, because I was fine. A headache, that's it. The other EMT reported that Davis was great. He told me that if Davis hadn't been propped against a pillow and a blanket that this could have played out much differently. The EMTs and cop also expressed a concern that the air bags didn't deploy and said I should do an inquiry on that as well.

The EMTs and police officer checked out my car and determined that it was drivable. They sandwiched me as I drove to Vandalia. We pulled off into a vacant lot where the police officer finished the paper work and we waited on Kyle. I had called Kyle immediately after the wreck, and he was on his way.

The police officer had finished with the paperwork at about the same time that Kyle had arrived. Apparently, there were several eyewitnesses who had called in. There was a partial plate, make, and model of vehicle as well.  There were checkpoints set up along the interstate at Brownstown and Effingham looking for the guy who ran me off the road. His plates were from out of state.  As of now, he still hasn't been located. The state police believe that he exited at the first Vandalia exit and took back roads. It is also possible that he lives in Vandalia. The police officer told Kyle later in the day that he was checking work establishments around town to try to identify the vehicle.  The odds of catching him are slim, but I don't care. The only thing that matters is that Davis is ok, and he is.

Davis makes me laugh. You gotta love the innocence of a child.  AS we were waiting on the interstate for the police to arrive, Davis said a couple of things that made me smile, "Mom, you can't tell Anna. I get to tell her. She isn't going to believe this." and "I hope my Ipad isn't broken."  It was in the trunk, and it's fine. When we were pulling into Vandalia with the police officer in front of us and the ambulance behind us, Davis said, "Mom, is there an IHOP in this town. I'm hungry."  While we were surveying the car damage with the police officer, he said, "We could walk over to the KFC and get something to eat while we are just waiting around here."  I was trying not to get sick to my stomach and he was trying to fill his belly.  Too cute.

I don't really believe in coincidence. I think that I would miss out on too many valuable lessons I could learn from if I did. The EMT who examined Davis shared with me that his EMT partner had leukemia when he was ten years old and is now married with with babies. The police officer who looked after us told Davis how proud he was of him for fighting this battle before he revealed that he had a brain tumor and was undergoing chemotherapy himself. Hmmm. What are the odds that we would be sent an EMT and a police officer whose lives had been closely touched by cancer?

Kyle drove the car home, and I followed in our Jeep. As I began to relax, the pain in my head was becoming more and more of a concern. I can't really remember when I hit my head (an inch above my forehead right along my part and two inches below and to the left side of my crown); I think it was when I hit the guy, but I am not sure. I had a horrible headache, a nice knot, twitching in my eye, and I couldn't chew because of jaw pain. Oh, and it felt like I had an ear infection. When I made it back to Charleston, I headed to the doctor's office. I know this sounds terrible, but I kept thinking about that actress Natasha Richardson who hit her head skiing, thought she was fine, and later died. By the time I made it to the doctor's office, I was physically sick to my stomach and very tired: two symptoms I thought were related to nerves and adrenaline crash. Well, I was wrong. I had a concussion, and I was sent to Sarah Bush for a CT scan to make sure there was nothing more serious lurking.  I was fine. Nothing serious. I was given the ok to sleep.  I have been on pain meds and doing a lot of sleeping. I am supposed to see some improvement in 48 hours.  Today, my head feels better but everything from my rib cage up is super sore and is causing a great deal of discomfort. I am not complaining. I am more than happy to be alive.

I can't even begin to count all of the ways I felt God was with us yesterday. I play the wreck over and over in my mind. I can't figure out what kept me from hitting other cars around me, what kept me from being hit head-on or by a semi, or what kept us from falling off the bridge, etc. God. I should be dead. Davis should be dead. I am just so thankful . . . so grateful. I joke when I say that I am pretty sure I would be a great Nascar driver, but I thank God for keeping his hand on us.

Thank you for all of your concerns, thoughts, well-wishes, and prayers.  It is such a comfort to see the rally of support when we struggle with situations.  You carry so many of our burdens and make our journey a little lighter.

Davis' chemo was postponed.  He is scheduled to have it on Tuesday pending a good report on his blood work on Monday. He will then get a two week break to let his counts build. So, we will be heading back down to Children's on Tuesday. I think I am going to let Kyle drive. :)

We will keep you posted.

Davis has been on a Mexican kick lately. I think he could eat it for every meal.

Wednesday morning blood work. His hemoglobin was so low that he just couldn't stay awake.

I know I was having more fun than he was.

Mom and son date in the playroom. I ate, he didn't.

Hotel at midnight. Sure beats the hospital atmosphere.  And look, a bed all to myself.

IHOP. Need I say more?  Davis is a huge fan of IHOP.

My view after the accident. I managed to turn my wheels and scooch a bit to try to get myself
out of the right lane. State worker parked in front of me to keep people from hitting me.

We think this is where it started. This is where the guy hit me when I merged back into traffic to
avoid hitting the concrete bridge head-on. This was jsut the beginning of the damage to the car.

Counting Our Blessings

11/25/2011:  11:35 PM

It's late. I hope I don't ramble too much.

Thanksgiving has never been my favorite holiday. I see cooking as a necessary evil and don't particularly enjoy it, and it is the pinnacle reminder that Christmas is coming, and I don't particularly enjoy the hustle and bustle often associated with the season. However, the simplistic idea of giving thanks has humbled me. I have so many reasons to give thanks.  Reasons that so many take for granted, like life. I am not sure I have ever truly appreciated the love of family and togetherness until now. I think I came pretty close last year when I lost my grandpa the day before Thanksgiving, but somehow my heart grows more thankful every day. My family has truly been blessed beyond measure, and as odd as this may sound, we are thankful for the trials and tough times before us, because it is with the struggles that we gain our strength.

Last weekend was uneventful which is exactly how we love it. Davis and I headed down to chemo after we dropped Annakate off to school on Monday. Despite eating a ton last week, Davis is still at 54 pounds. His protein level improved, but his calcium levels have not. In clinic, he received a couple of different chemo meds through his port, and then we headed downstairs for his spinal. The APC (Ambulatory Procedure Center) was behind, so Davis' procedure was pushed back by almost an hour. He was pretty patient though.  I stayed with him in the procedure room until the propofol worked its magic. About thirty minutes later, I was reunited with him. The APC hands you a beeper similar to what you hold on to at the Olive Garden. When your child is stable enough to be seen, the beeper flashes red lights and makes a loud beeping noise. Davis was to stay flat for one hour to cut down on migraines. He often gets headaches when coming out of the anesthesia. To prevent this, the docs give him a bag of fluids and require him to hold still for an hour after the procedure. When the hour passed, Davis was cleared to go home. He was still quite groggy and his back was pretty sore, so I wheeled him to the car pick-up. He slept nearly all of the way home.

Luckily, Tuesday was a pretty easy day for him at school.  Even though he was quite nauseous from the chemo the day before, he still went. It is crazy to think that Davis' schedule consists of chemo and spinal one day, school the next. It is yet another blessing that Davis is still able to attend school in for nearly the whole month of November. The kids in his class have remained remarkably healthy, and Davis seems to be holding his own in terms of ANC (absolute neutrophil count or immune system). 

We were able to visit Grandpa and Grandma Fanello in Tennessee for Thanksgiving.  The trip has been pleasant and enjoyable, but the drive is far too long. Davis has spent a great deal of time in his pajamas in front of the TV.  His Uncle Andy brought a gazillion Wii games and movies galore. Davis is content. We have been doing our best to keep him out of crowded areas, and at this time of year, it seems everywhere is crowded.

Well, it is back to school on Monday. I have never been so appreciative of routine in my life. On Wednesday, Davis is scheduled for another CBC (complete blood count) and CMP (complete metabolic panel). If his counts are good, we will head down for chemo on Thursday. It will be the last chemo treatment on this 57-day roadmap. We will start the next roadmap (scheduled chemo phase) two weeks later. He will get two weeks off from treatment right before Christmas. The next roadmap appears more complicated than the one we are about to finish. The chemo treatments are more frequent, there are more oral medications, and there are a few chemo meds that Davis hasn't taken before. We will be watching for reactions and side effects to new meds and even to the ones he is used to taking as his body is wearing down from the treatments.

We continue to ask for your prayers for Davis. His mouth is full of mouth sores caused by the increased dosage of methotrexate, one of his chemo drugs. He is miserable. Chemo is very drying, and in addition to his mouth sores, his lips crack and bleed. I fear that the mouth sores and cracked lips will lead to weight loss, which we can't afford.  Please pray that the next roadmap isn't as tough on his little body as it appears it is going to be. My stomach turns just thinking about all of the medications that will be pumped into him. And yes, there are more Peg shots to come. Please help us pray for our continued good health and for those with whom we come into contact. We need wisdom to keep our son safe and happy. We are finding it difficult to keep the holiday events and activities (get-togethers, shopping, upcoming Christmases, etc) "normal", and still keep the health of Davis front-and-center. We are constantly compromising, and Davis already feels robbed of so many experiences and activities.

And in the spirit of Thanksgiving, thank you for your support, encouragement, and prayers. They are things that we have grown dependent upon.

We will keep you posted.

I am trying out a different format. I have attached some pictures from this week.

Annakate gathered food to donate for her birthday. Here she is dropping off
some of the goods to the food pantry in Ashmore.  It was such a great
experience for her.

My neice, Faith, did Annakate's hair for church. She looked beautiful and far too mature. It
hurts my heart a little to see her less and less as a little girl and more and more like
a young lady.

While I was completing paperwork at the Admittance Office at Children's on Monday, Davis patiently waited.

Davis is getting ready to receive anesthesia for his procedure in the procedure room (appropriately named).

The procedure is over, and Davis is groggy and sore.

A surprise came in the mail this week. The quilting care group of a church in Estes Park, CO sent
Davis this awesome blanket and pillow. They also sent him some great words of encouragement as well. This
is perfect for the car rides to and from St. Louis.

Annakate, with her cousin Shane, are awaiting the Thanksgiving festivities at school on Tuesday.

In my opinion, this is a wonderful way to pass some of the 5 1/2 hour trip to Tennessee. Annakate thinks of
everything. Not only did she remember to pack herself a light-blocking mask, she even managed to put one on her monkey.

Thanksgiving Lupper (somewhere between lunch and supper) is nearly ready.  The kids are ready for sure.

My kids have been coming to this park for years. It is quite impressive. This picture doesn't capture it all.

The kids jut in and out of places. They pop their heads up every now and again. We catch glimpses of them
before they disappear again. Davis held still long enough for me to snap this.

Grandpa Fanello and Annakate are playing in this pic.

Davis didn't last as long as his sister and cousins did.  Here he is resting. He wears gloves to cut
down on the transmission on germs. We can't possibly clean everywhere he touches on a playground, so gloves, at times, are
the only sensible solution in addition to good hand washing. 

Music to My Ears

11/18/2011:  12:55 PM

A-maz-ing week!! Completely uneventful.

Davis has felt pretty good all week long.  He still struggles with extreme fatigue. On Wednesday, our local hospital completed a CBC on him. This was to ease my mind that he didn't have a drop in hemoglobin. When hemoglobin drops, Davis becomes very pale, his eyes dark, and he has a tendency to sleep more and get headaches often. No worries. His levels all checked out. His hemoglobin was 9.4, and he isn't transfused until he is around 7. His platelets were 89, and no transfusion needed until 10. His ANC (absolute neutrophil count or "immune system") was at 1851, and healthy kids are 1500 or above.  I am so thankful for the high ANC during this cold/flu time. I will pick him up at lunch today at take him to Sarah Bush for another CBC (complete blood count) and CMP (complete metabolic panel) because he is set for chemo and a spinal tap on Monday.

This week has been devoted to school.  Davis' teacher, Mrs. Meyer, and I have been fine tuning our communication techniques to make sure Davis is getting all of his work completed. It is pretty easy to keep track of when he is at school consistently; it is when he misses days after days that causes him the trouble. Davis has finally started consistently practicing his band instruments. He plays percussion.  And to be honest the snaps of the snare and the shrill pitch of the bells set don't bother me one bit.  I think it may be because I played percussion in school and have such a respect for the percussion section, and teaching and having children have allowed me to develop my super-awesome tune-out mechanism. Davis has been very apprehensive to play in the band when it is assembled as a group because he has a fear of messing up. Unfortunately, when you play an instrument like percussion, everyone can tell when you are off.  I think that when he is comfortable with the music, he won't worry so much.

Well, here's a new one.  While Davis still has hair, he is losing his eyebrows. The bushy parts near the bridge of the nose are practically gone, and the outer parts have thinned considerably. It's funny looking.  I remember when Davis prayed he wouldn't lose his hair.  I can't help to think this is God's way of showing a sense of humor. God answered his prayer. Davis should have been more specific if he wanted to hold on to those brows. :)

I had a surprise visit from some of my kids earlier this week.  Well, they aren't really my kids, but I rarely think of my students as belonging to anyone else but me. Most of the time, I care for and treat them as I would treat my own, so I usually don't take the time to differentiate. It was a quick visit, but it made my day. No, my week. I just get so homesick for my students and the routine. But the people I work with and my students do a great job of keeping me included, and I am grateful for it. I know this leave of absence is temporary, and I know I am right where I need to be.

The kids have been working on their upcoming church Christmas play.  Practices have picked up a bit and that has busied our schedule a bit more. Davis decided not to take a part this year. He didn't want the added responsibility of memorizing lines, and he worries that he may be unable to make it because of illness or doctor's orders. He plans on singing in the choir though. The choir is where his true passion is anyway. Davis has always been drawn to music. And before diagnosis, Davis played the piano, composed music, and wrote little songs (mostly silly) every week.  When he was diagnosed, it seemed like his love for music melted away nearly overnight. Lately, I have seen a rekindling of his interest again. All the way home yesterday, he sang a tribal Indian chant to me. It made me laugh quite a bit. 

Davis heads down to St. Louis on Monday given his counts today are good.  He will have chemo via his port, and he will receive a spinal tap.  I pray that all goes well.  It is still very hard for me to see Davis put under anesthesia. I feel so helpless when watching him fade into eye-open coma-like state, and I struggle to relax the whole time he is under.  I think Kyle feels the same way, even though he has never verbalized it to me. There are many times that I just want to scream, "Enough!  Just do it to me!", but I can't. I am sure that any parent who has a chronically sick or life-threatening ill child feels this way. I can't imagine that I am the only one.



We continue to ask that you lift up positive thoughts and prayers for Davis because we still have quite a journey ahead.

We will keep you posted.

The Pictures I Promised

11-12-2011:  1: 54 PM

I forgot I had a card reader on my laptop.  Anyway, a picture is worth a thousands words.

Annakate is eating frog legs in this picture.

Annakate is helping Bro. Kurt run the sound board at church.

Have the snacks, the drinks, the birthday girl. We just need the
classmates to celebrate.

Davis and Marla. . . .and of course, the coins.

Our friends, Kristin and Andrew (Davis calls him "Rabble Rabble") picked him up
this Cardinals flat-bill cap.  Davis thinks he is so cool; I think he looks a bit dorky. And so the age gap
on what is cool and what isn't widens.

Davis is getting chemo in this picture. A nurse had this beautiful scarf that was handmade in Africa.
She draped it on Davis because he looked cold. I don't know why, but I love this picture.

Davis took this picture. Annakate and I are waiting for Kyle to pull up the car
to the pick-up post near the parking garage.

Here we are getting ready to eat at Kobe's, a hibachi grill restaurant.

This is right after Davis has received his Peg shots. He has to gather his strength and courage
to move his legs afterwards. He just hangs out until he is ready to move.

We ran into Ms. Karen Turnbow, Ashmore School lunch lady, in clinic on Friday. It was nice to see
someone from home in St. Louis.

Annakate did a food and pet food drive for her birthday (in lieu of gifts). We dropped off
the dog and cat food at the animal shelter today. It was risky, because we barely made it
out of there without bringing a critter home.  I knew I was in trouble when Annakate said, "Hey, Mom. I brought my money with me. Maybe I could get a dog instead on an i-pod." 

This is impressive and very moving. Jefferson School has a whole wall
with students' hands on it. Many of the hands have encouragement for Davis on them.
This picture doesn't do the display justice. My camera was too small to capture it all.