Off Again, Then On Again

11-11-2011:  11:54 PM

We have had one amazing week.

Saturday was Annakate's birthday. She had a lovely birthday party at the roller rink.  There was plenty of little ones and plenty of spills, but I think everyone had a good time. Davis skated a bit as well.  He wore his chest guard and bundled up. I am not sure why he bundled up, covering up with his sweatshirt and then a coat. My best guess is that he was providing himself a little padding in case he fell.

Sunday and the rest of the week felt surprisingly normal. I have never been so grateful for routine and the mundane in my entire life. On Sunday, we managed to make it to both morning and evening services. The afternoon was devoted to homework.  Pretty normal. The majority of the week followed suit.  Davis made it to school - on time - the first three days of the week.  He is nearly caught up on work from missing last week with the exception of band, I think. He managed to stay at school for the entire school days but did have to take naps periodically.  His nap could be 20 minutes or 2 hours; it just depends on his body. I expressed a concern about the extreme fatigue to the nurse practitioner at the clinic, and she reassured me that extreme fatigue is a very common complaint. The chemo over time becomes very taxing on his body, and sleep is the way that his body copes and rebuilds.

Tuesday evening, Mrs. Marla Crouch, Oakland High School secretary, stopped over for a visit. She and her family have been a great source of inspiration and encouragement to us. Marla is a recent cancer survivor herself, and her youngest son Cameron is a living miracle. For those who don't know, Cameron was doing surveillance in a watch tower while on duty in Iraq when the tower floor gave way. He fell 70 feet to the ground. Although he sustained several life threatening injuries, he survived. With God's help and good old fashioned fight, he conquered the unfairness of the situation and came out on top.  Just like Davis is going to do. Anyway, Marla's oldest son, Caleb, gathered backpacks full of goodies from the National Guard where he works. Davis and Annakate loved them.  They were drawn to these coins especially. Marla explained that National Guardmen receive coins for accomplishments or exemplary character. She told Davis that he deserved them because he was so brave and strong. The kids couldn't wait to take the coins to school and show everyone. In addition to the goodie bag and coins, both Caleb and Cameron wrote Davis letters of support. It was emotionally indescribable to read such uplifting words from these soldier heroes to my little guy - my hero. Thank you, Crouch Family; you continue to inspire us.

We decided early on in the week to bring Annakate along for Davis' two day chemo treatment on Thursday and Friday. She hasn't been down to St. Louis with us in a couple of months, and we thought it would be a nice get-away, chemo aside. On Wednesday evening after Davis had his blood draw at Sarah Bush, we received a phone call that Davis' platelet count wasn't high enough for chemo. A general rule is that platelets have to be over 75 to guarantee the chemo doesn't wipe out his supply. Davis' platelets were 64. We were told that we would do the two-day chemo treatment on Tuesday and Wednesday of the next week given that his Monday CBC revealed that his platelets were up.

The kids were pretty disappointed when they had to get up and go to school on Thursday morning. Davis doesn't roll with the punches as well as we hope. He has to mentally prepare himself for everything. I dropped Annakate off at school and was headed to Charleston to drop Davis off when I received a phone call from the hem-occ clinic. Apparently, there was a mix up, and as long as Davis' platelets were over 50, he could still receive chemo, but the dosage wouldn't be increased. The chemo dosage would stay the same as it was ten days prior. (Davis is in the phase where he is given the same few chemo drugs, but each visit the dose is increased). The nurse asked us to hurry down and try to make our original 11:30 appointment. I turned around at Sturdi-Built and headed home to pack. Kyle left the farm, picked up Annakate from school, and met us at home. Luckily, over the last few months, I have become a speedy and efficient packer, and with Kyle's help, we were on the road in no time.

Davis took his chemo and we were out of there relatively quickly which gave us the day to play. We ate at the kids' favorite restaurants and did a little shopping. Davis rested in the hotel room while Kyle took Annakate to the pool to swim. It was a restful and relaxing evening.

Friday morning was a different story. Davis started freaking out about the Peg shots he was scheduled to get. At first, he refused to leave the hotel room, but we managed to coax him into the car. Once we got to the hotel, he refused to go to the 9th floor, so we sat in the lobby on the first floor for quite some time. Luckily, we made it to the hospital early, so we had some time to kill. Finally, the combination of the anti-anxiety medication and common sense kicked in, and we headed up to the 9th floor. Davis took the shots like a man. The shots look like they would hurt, and judging by Davis' reaction, they must be very painful.  But he did it. We had to then wait around the clinic for an hour to make sure he didn't have an allergic reaction, and he didn't.  We mosied on home, taking our time making it back to Ashmore. The kids slept most of the way.

Davis weighed 55.2 pounds on Thursday. I was a little disappointed that Davis hadn't gained weight because he has really been eating consistently and eating the right things. The doctor reminded me that the bright side is that Davis didn't lose any weight over the past week. On Friday, Davis weighed 54.1 pounds. He lost a pound in 22 hours! The nurse talked to Davis about using protein and calcium supplements to offset some low reads from his CMP (complete metabolic panel).  Davis isn't a fan on any of the chews, bars, drinks, and powders for protein and calcium on the market, and it feels like we have tried them all.  The nurse and I had the familiar sometimes-you-have-to-do-stuff-you-aren't-going-to-like talk with Davis . . . again.

We are looking forward to having a full week without St. Louis. Davis is scheduled to head back for chemo in ten days. He will receive a spinal then. The break from LPs (lumbar punctures) has been very nice. He is looking forward to going to school provided that the kids in his classes are in good health. We can't wait for another blissful, uneventful week.

Every day we are reminded how good God is. I find myself thanking God for things I have never ever once thought of previously - things, I guess, that I just took for granted. I thank God that Davis is able to go to school for a whole day. I thank God that Davis eats chicken and gravy baskets from Dairy Queen. I thank God that Davis still has some hair. It is not that it mattered to me, but I know it matters to him, and having hair is one lessened reminder of what he has to go through every day. Thankful and blessed. My two words of choice. We are thankful that we have been blessed with such amazing family, friends, and a community that relentlessly support and encourage us. It will take us the rest of our natural lives to pay it forward.

Our prayers haven't changed. We still pray and believe for a complete healing and CURE for Davis. We pray that he suffers no long term side effects or secondary cancers for the rest of his long life. We pray against short term side effects as well.  We pray against fevers and for the health of the kiddos he is in contact with at school. If they are healthy, the chance that Davis stays well is significantly increased. We pray for Davis' mental well-being, as I am sure that this experience wears on the mind as much as it wears on the body. I dream of the day that Davis is able to encourage and comfort another with his experience and his testimony.

We will keep you posted.

I apologize for the shortage of pictures. I have taken many this week, but I have misplaced the USB chord that hooks my camera to my computer. I plan on getting another soon. I will catch up on pictures just as soon as I can get them off my camera. And I am sure that as soon as I purchase another chord, my missing chord will show up, and then I will have two.

Hospital, Homesickness, Then Home

11/05/2011:  11:00 AM

passed out in SBLHC ER

I think I last blogged on Wednesday. Time for a little catch up.  Davis slept the entire day on Wednesday, which was a blessing because he has severe homesickness during hospital stays. Throughout the day, doctors and nurses wandered in and out checking on him. I was told that Davis had tested positive for something called C Diff or C Difficile.  Despite never hearing of it, I learned that it is quite common. It is seen primarily in hospitals where people are immuno-compromised (like Davis) and in nursing homes. Babies get it quite often too. The large amounts of IV antibiotics that Davis had received over the course of the four days had killed off the good bacteria in the intestines allowing the bad bacteria to multiply. The effects are stomach cramping and loose stools (He would be mortified if he knew I just blogged about stools.). Ironically, a different antibiotic taken three times over ten days clears it up.

Wednesday night was a rough one. Davis was very homesick and refused to take his medication. Finally, he was given some take-the-edge-off meds that also sedate him. The nurse and I struggled to get his meds in him.We were trying to get them in him in under an hour in anticipation that he would fall asleep.  Not so fortunate. The little guy cried for over two hours. Out of all the people and things to miss, he missed his cat, Jerry. Oddly, I had a picture of the cat on my cell phone. He would stare at the picture and cry and hold the phone to his cheek as though he was cuddling the cat.  He was so sad and pathetic. At around midnight, I streamed a documentary onto my computer on Egyptian pyramids and pharaohs (Davis and I are both fans of Egyptology.), and we watched three episodes before he finally fell asleep.   



gobs of sleeping at SLCH



The next morning, Davis's doctor, Dr. Schapiro, concluded that the fever was caused by a viral infection. On Wednesday evening, Davis developed a rash all over his body. This was another tell-tale sign of a viral infection. He continued to receive a broad-spectrum antibiotic and fluids until he was discharged on Thursday afternoon. 

Before we were allowed to leave the hospital, we had to meet with a nutritionist. The doctor expressed a concern in Davis' weight loss, because there has not been any marked improvements in a while. She also feels that Davis' malnourishment is and will continue to lead to poorer health overall. His weight loss is affecting his ability to fight off infection like it should.  The nutritionist offered us some information that we  already knew. Davis is on a high calorie-high protein diet.  Basically, he can eat anything he wants, and really fatty foods are encouraged. The problem that we have is that Davis is a very picky eater; he has always been. All of the foods he is being encouraged to eat, he won't touch: peanut butter, avocados, yogurt, sour cream, ice cream, pediasure, milk shakes, protein drinks, etc. He is drawn to grilled chicken, salad, and water. (I wish that is what I was drawn to.) One beneficial effort that the nutritionist provided us was helping Davis to establish a goal. Davis is very goal-oriented and competitive, so giving him a goal gives him something to work towards instead of the generic demand of "you need to gain weight". For his height and frame, Davis should weigh between 65-75 pounds. This is a conservative estimate. He weighs 55 pounds now. We have set the goal to weigh 65 pounds by Christmas. The nutritionist thought that 65 would be great and 75 would be better.  So we are working towards the goal. Davis has been doing well that last couple of days. I think in order for him to continue with this long term (eating foods he doesn't necessarily like even when he is not hungry), he is going to have to see some results. I am praying for an improved weight on November 10th when we go back to clinic for chemotherapy.

Happy Thursday! Heading home!

Davis's ANC (immune system) remained very high despite the viral infection and bacterial infection.  He was cleared to resume normal activities as long as he felt up to it. He attended school on Friday. He was very drained and had to take a couple of naps, but still managed to stay the day.

Today is Annakate's birthday. It is hard to believe that my baby is eight. She is going to have a little party with her friends at a roller rink, and the doctors cleared Davis to go. He will have to wear his mask and his chest guard and wash his hands a million times, but it is a small price to pay to be able to get out and have some fun. We are looking forward to an afternoon of celebration and an evening full of rest. Poor Davis. We plan on spending tonight catching up on some homework. I know he thinks it is unfair that he has to do homework on a Saturday night, but we have to get the work done while he is well. If he is averaging one to two days at school a week, well, that is quite a bit of make-up work. 

We are praying for some uneventful days. The plan is for him to attend school Monday-Wednesday. Thursday and Friday, he will be in St. Louis for a two-day chemo run.

Thank you all for the prayers and thoughts you send our way.  We feel the support just as we did when we were diagnosed. You are relentless in your efforts to uplift our needs. We truly love and appreciate it. May God bless you and your family on this beautiful fall weekend. 

We will keep you posted.

Par for the Course

11/2/11:  3:11 P M

I think I spoke too soon.  Davis and I did spend most of Tuesday resting. I called to the clinic at around 3 PM to get clearance from returning to the ER in the case that Davis developed another fever in the evening.  At 3 PM, I was told that Davis could stay home and even go to school with low grade fever. I was to bring him to the ER if he spiked a fever of 103 or greater. Sarah Bush was growing cultures which yielded no infections, and Davis had some massive antibiotics pumped into him the last two nights.

A little after 5:30 PM, the clinic called me back to check on Davis.  I told the nurse that Davis was fine. He was still running a low grade temp and had some chills, but overall, he seemed ok. The nurse put me on hold while consulting the doctors. She then informed me that it was necessary for me to bring him back to Sarah Bush for more cultures and antibiotics. There was a concern because the antibiotics should have broken the fever. Although Davis's ANC is still well above the healthy norms and he is feeling relatively well, he was transferred to Children's a little after midnight. This is a precautionary measure to make sure that the fever isn't an indicator of something more serious.

Once again, the cause of the fever is unknown. Since the fever continues to be low-grade and disappears during the day, there is a good chance that it is some type of viral infection. This would also explain why the fever hasn't subsided with the antibiotics. But you never know, so that is why we are here. As of now, the plan is for Davis to avoid a fever for 24 hours, and then we will be able to be discharged.

Since Davis was not neutrapenic (ANC below 500), we were able to be transported by the Charleston Fire Department. This was wonderful, because otherwise, we have to hang out in the ER until an ambulatory unit from St. Louis arrives.  Not only did we not have to wait for transport, we knew the EMTs transporting us. They were awesome. It may sound weird, but it was such a comfort to have some familiar faces on the 9W floor for however brief an amount of time. It was like a little bit of home was witnessing the part of our lives that most don't see, but only hear about. Thank you, Ben and Kirby.

Unfortunately, Davis has fallen into his normal hospital behavior, and fortunately, we have Elise. She is a pretty, little 20-something nurse who isn't phased by Davis's poor attitude and weeping moments. I love her; Davis loathes her. Well, that may be a little dramatic. Let's just say, she wins every argument and completely eliminates Davis's excuses and say-so. For the twenty minutes that Davis was awake this morning, he cried and fought through his medications. He told me that he wasn't going to eat or take his meds until he got out of this place. My son is very intelligent and rational, but it is clearly not demonstrated during hospital stays. Well, Elise got him to take his meds before he was sedated with IV Benadryl. The IV Benadryl helps with his nausea and helps him to relax and pass the time in the form of sleep. He hasn't eaten anything, and drinking is minimal. He has been sleeping  for the last four hours.

Please pray that the cause of this fever is found and/or that is goes away and stays away. Sometimes it feels like we take two steps forward only to take three back. While we are inconvenienced to be in St. Louis again. I am glad to be here so he can be properly cared for. Plus, three nights in the ER was starting to wear on both of us.

Thank you for the prayers and positive thoughts that you have said on Davis's behalf. We know that this sickness - whatever it is - is minimal because of your support and because God answers prayers and has His hand on Davis. 

Looking forward to coming home soon. We will keep you posted.

Wow! What a Weekend!

Davis and Wade

11/1/2011:  12:55 PM

Friday . . . . Halloween Party!  Davis was thrilled that he didn't have chemo scheduled on Friday. This allowed him to go to school and celebrate Halloween with his class.  He had a blast.  The students changed into their costumes, walked around the Charleston square, and then celebrated with Halloween games and a movie.  By the time early dismissal hit at 1:00 PM, he was wiped out. Friday night was dedicated to rest and the World Series game. The kids were both in bed before 9:00 PM, and I fell asleep during a commercial break at the bottom of the seventh inning. I can't tell if that is a sign that I am getting old or if it is a sign that I am really tired.  My mind has convinced me to think that latter.

Wade "mummyfying" Davis

On Friday, Davis had a CBC (blood work) and a CMP (complete metabolic panel) done. We had expected his counts to drop because of the chemo he had the previous week.  Naturally, I was surprised and concerned when I was told that his white blood cell count was over 4 (healthy kids are between 5-10, and Davis usually hovers in the 1-2 range), and his ANC (immune system)  was over 4000 (healthy kids are over 1500).  The clinic had no concerns. It was their stand that he was very healthy, and we were encouraged to enjoy the rise in counts. Kyle reminded me that the huge count jump had happened before  -- right before Davis had developed an infection.

Saturday . . . The kids and I were able to attend part of the Tri-County play-off match up with Arcola. Since Davis has limited energy, we took along a walker that has a built-in bench. He can walk with the walker if he needs it, but he prefers that he sits on the bench while we push him around. The bench seat also allowed for him to sit along the fence line to watch the game, if that is what you would call it.  He did more eating and visiting than he did game watching. Davis spent every bit of energy he had and was ready to leave during the third quarter, so we cheered the boys on listening to the radio on the ride home. Despite the sad loss, the Titans had an amazing season, and we were proud to cheer them on this year.

a doctor and a gypsy-pirate

Saturday afternoon was nap time.  Saturday evening brought a bit of trick-or-treating. We only made it to two houses, but the kids didn't mind. Davis doesn't eat candy, and Annakate doesn't eat much. The kids always enjoy going to the Ashmore Community Center for a little contest, so we did that. We were home by 8:30 PM, and both kids were worn out.

Sunday started with our normal routine, but after church, Davis was extremely nauseous. He slept most of the afternoon away. I checked on him periodically and noticed that he was running a bit warm.  Yep. He had fever.  The fever was low-grade, and he was under blankets, so I didn't stress over it. There is a rule for fevers for kids with cancer. You are to call to Children's if the child has a fever of 100.4 or so for more than a couple of hours. If the fever hits 101.4 just one time, you are to call to Children's. Kids with cancer run the risk of a port or line infection, which can cause sepsis (blood poisoning). Cultures have to be grown to rule this out. There is bigger risk of problems if the child is neutrapenic (has an ANC below 500), because the child can't fight infection off by him/herself. Annaakate and I attended evening church, while Kyle stayed home with Davis. Near 8:00 PM, Davis' fever climbed up to 101.8.  That warranted a call to Children's. The protocol after that is to head to Sarah Bush - the local ER - where a CBC is taken and a culture is started.  Sarah Bush is in close contact with Children's and together they create the plan. The CBC on Sunday night proved an even higher ANC than Friday. This means that Davis's body is healthy enough to fight infection assuming it is not a port/blood infection. He was treated with a bag of fluids to ward off dehydration and a broad spectrum antibiotic.  Davis and I made it back home at 1:50 AM.

Monday . . . Davis and I headed down to St. Louis for a morning chemo appointment.  We were both exhausted. I didn't have the luxury of sleeping, so I hit scan on the radio and enjoyed the views.  Many might go crazy fishing through radio stations, but I enjoy it. I heard "Thriller" (parts of it anyway) 13 times, which tied with Adele's song, "Someone Like You". I counted 11 dead deer, 2 dead coyotes, and 2 unidentifiable creatures. The trees and the fields are growing bare, and it seems that the road construction continues to flourish.

Annakate trying her
hand at being a
ventriloquist

We were only in clinic for about an hour. Of course, he had no fever during the visit, and no one seemed concerned about it assuming whatever the cause was treated by the antibiotics and behind us.  He weighed 55 pounds still.  The bright side is that he hasn't lost weight this last week, but the dark, depressing side is that he hasn't gained any either. Davis slept the entire way home, and I fell into my pattern of listening and watching all the way home.

When we were finally home, Davis watched some TV, Annakate worked on her homework and chores, and I took an hour-long nap. A much needed nap. I told the kids that an uninterrupted nap would be the best birthday present from them (Oh yeah, did I mention that yesterday was my birthday?  It was perfect, but not in the traditional sense.) I think they thought that the nap was a win-win, so they let me sleep.  It was a good thing I did, because Davis' fever spiked again. By Children's Hospital doctor's orders, we headed back to Sarah Bush for more blood work, cultures, and antibiotics. They were swamped, and that is putting it mildly. We arrived a little after 7:00 PM, and made it home at midnight. Since his ANC was so high and the cultures didn't show anything growing, Davis avoided another transfer to St. Louis.  Yay!

Davis and I slept in today. The morning was spent eating and working on homework.  He is trying to get and stay caught up with school work.  We both hate that feeling of having something hanging over our heads.  He was planning on going to school at noon today but was overcome with exhaustion and fell asleep working on science homework around 11:30.  I didn't have the heart to wake him up.  I think that we will rest and catch up today, and he can head back to school tomorrow.  His fevers tend to surface at night, so we will see how tonight goes.

Fevers . . . Fevers indicate infections. This is where it becomes frustrating as a parent. I want to know what causes the fever. And often with healthy children, we know because our children develop symptoms or are teething, etc. But with a child with Leukemia, the simple truth is that more times than not, there are not explanations. We don't know how Davis developed Leukemia, we don't know what caused his illness and week-long hospital stay a couple of weeks ago, and we don't know what is causing the fever now. The unknowns are scary.  It takes a leap to rely on the doctors and adopt the if-they're-not-worried-I'm-not-worried mentality, because the bottom line is that it is not their baby. They haven't invested their hopes, dreams, prayers, hours of worry and concern, and tiring efforts into this little life. It takes a trust that I have never known to rely on my faith, and that whatever it is - illness, fever, virus, bacterial infection - God knows, and he will take care of it. And I guess what adds to the frustration is that Kyle and I have always been problem-solvers, fixers, doers, and when Davis is sick, we don't know how to fix it, and there is nothing we can do to make it go away or to take away any of these experiences for him. However, each day brings added blessings, and this journey continues to change us for the better. 

Davis will have his next chemo treatment ten days from now. It will be a two-day treatment with the horrible Peg shots coming on the second day.  Please pray for his mental and physical strength. These shots are extremely painful, and it seems that the pain is worse each time because of his loss of leg muscle and increase chemo dosage. We are going to enjoy the spacing in chemo to lead normal lives. This weekend, we saw glimpses of our old normal life (going to the game, school parties, etc), and it was almost like an affirmation that this cancer experience will be behind us soon. Affirmation, not wishful thinking.

We have seen the power of prayer. Davis is doing so well with a great ANC despite having some kind of infection somewhere. His mouth sores are practically gone. He has an appetite, and he has even had a little hair growth.  Yes, despite receiving the hair-loss causing chemo every ten days, Davis still has hair!  We thank you all for your support.  We couldn't imagine trying to do this without your positive thoughts, concerns, and prayers.

Oh, I nearly forgot. The Times-Courier/Journal Gazette, our area newspaper, ran a very nice story on the efforts put forth by the Oakland and Jefferson schools to support Davis. Kudos to Rob Stroud. Special thanks to the schools, the students, and the communities that make Davis feel so welcome and loved.  I am attaching the link; just click on it to view.

School communities come together to support child's leukemia fight

We will keep you posted.

Team Davis T-Shirts

A few people have mentioned that they were unable to find the order forms for Team Davis t-shirts. I assume that the information was buried in a post somewhere. 

If you are interested in ordering a shirt, you may do so by clicking on the link below, printing the form, and mailing it and payment to Mandy Hanner, c/o Oakland High School, P.O. Box 378, Oakland, IL 61943.

Team Davis T-Shirt Order Forms

Just a reminder that the orders are due on Monday, October 31.
Also, for those who do order shirts, feel free to email, mail, or facebook (can that be used as a verb?) me a picture of you in your Team Davis t-shirt. I am going to make a photo album/memory book for Davis from his supporters and prayer warriors. Please specify if you do not wish for your picture to be posted on the blog; many pictures end up here. 

email: abcoffey77@gmail.com

address:  9208 N Co Rd 2270E, Ashmore, IL 61912

The Week Keeps Getting Better

10/27/2011: 11:33 AM

The week started out a bit rough but continues to improve.

Davis was very nauseous and tired on Sunday evening and decided to regress to some behavior we thought was behind us.  He refused to take his last dose of medication. After hours of pleading and arguing, Davis was so worked up, he was out of control. Near midnight, Davis had a panic attack and couldn't breath. The thought of Davis suffocating terrified me, and I called 9-1-1 while Kyle worked on settling him down by encouraging deep, slow breaths. Thankfully, Davis was able to calm down before an ambulance was dispatched. Davis finally relaxed enough to fall asleep in the recliner in the living room. He never did take that last dose of medication. Luckily, it was a side effects medication and not chemo medication. The house quieted down and all were asleep by 1:00 AM. Poor Annakate! There was no way she could sleep through all of that chaos, though she didn't complain. She has such a tender heart. She worries as much for Davis as we do. 

Wii = PE at home

Monday. The night before had been erased from his memory and the new day brought with it a better frame of mind and a good start. We were headed to Charleston when I checked in with his school. Sadly, there were several students who were out sick from his class or exhibiting signs of sickness in his class (little coughs, headaches, scratchy throats).  Davis had to stay home. Davis might feel great, but since his immune system is suppressed, he is at greater risk for catching a virus or infection. Since he is unable to fight off infection by himself, he has to be hospitalized so the doctors and medication can fight the infection/virus for him. So there are times when he is perfectly well and capable of going to school, but the health of others prevents that. It's inevitable; kids get sick. Davis, however, didn't handle Monday well.  He didn't see how it was fair that he had to stay home. His "not fair" list has grown longer and longer over the past few months, and I get sad for him and for me that I can't fix some of the injustices that go along with cancer and its treatment. The only comfort that I can offer him is telling him over and over again that this is not permanent, and this will not last forever, but to a 10-year-old, I am sure that it sounds like too much of a cliche to be true.

On Monday, he devoted himself to school work, Wii playing (I told him that it was his PE time), and sitting around and complaining in true 10-year-old fashion.

On Tuesday, he went to school. The kids in the class are feeling much better and  appear healthy. Davis takes a few more extra precautions to be at school (wears mask all of the time, extra hand washing, etc), but he is so happy to be back. He has been attending school all of this week.  He fizzles in the afternoon. He doesn't really have the energy to sustain the activity of a full day. On Tuesday, he took a nap at school. On Wednesday, I picked him up early so he could come home and rest. That's ok. He loves school, and he loves being there.

Davis's appetite has increased some. We can relax a tad because he is eating and choosing healthy choices, but I can't truly relax until he starts putting on weight. We head to the little convenience store in our village, I and I Deli, and Davis orders a hot ham and cheese sandwich every morning. I offer to make him hot ham and cheese sandwiches, but Davis seems to think that no one can make them as good as Tim can, so we will continue to eat Tim's hot ham and cheese sandwiches as long as Davis craves them. His appetite seems to be the best on the morning and decreases as the day moves along.

What else is going on? Hmm. Annakate received a trophy in the mail for being a good sister to Davis. She is enrolled in this organization called SuperSibs. The organization sends her something to make her feel special about every month. This is such a great program. I hate to admit it, but I don't find myself doting on Annakate like I used to. Instead of doing her hair in the morning, I am getting Davis dressed or giving him his medication. Instead of reading her bedtime stories, I am helping him with his homework. While Kyle and I do make an effort to devote individualized attention and time to her, the program helps us by surprising her with encouragement. Plus, she feels so important.

We love living in the country. We have fantastic neighbors (In the country, everyone within a five-mile radius in any direction is your neighbor.) who look out for one another, and the space allows the kids to run and explore. I love the opportunities that country living and nature provide to my children. The wildlife alone creates our own hands-on encyclopedia. Over the course of a week (depending on the season), it is not uncommon to see hawks, owls, vultures, quail, deer, raccoons, stray cats, skunks, opossums, snakes, and coyotes in our yard. Yesterday was no exception. My normal morning routine includes opening my kitchen blinds allowing the natural light to flood in to warn everyone -mostly me- that morning is indeed here. I think I gasped before a smile broke across my face when I saw our neighbor's horse grazing by the trampoline.  What a delightful surprise to the morning! No worries. I called my neighbors and the horse was home safely in its fence in no time. I sure hope the horse manages to make it over again sometime. I think my neighbors sure hope it doesn't.

Tomorrow, Davis will get a CBC. We should know where his ANC (immune system) is then. The chemo last week should have made it drop, but we don't know how much. His ANC and his overall health will determine how much he can do this weekend. We have never really trick-or-treated in the traditional sense. We usually stop by a few houses that belong to family members. Davis doesn't eat candy, chew gum, or suck mints (We let him; he just doesn't like that type of stuff.), so he doesn't really care to trick-or-treat. I think a great deal of the weekend will be devoted to make-up school work from the two weeks that he missed. We will head down to St. Louis on Monday for chemo. He plans on wearing his Halloween costume, a doctor, to clinic. 

My kids love Andy Anderson. Andy makes some great
balloon creations. Davis asked for a circle, and Annakate
asked for a square. They thought that was hilarious.

Davis has developed mouth sores (very common). He has been pretty fortunate to not have too many until now. I believe that it is the methotrexate that he receives in his port that is causing them, because that was the only new chemo added. Methotrexate causes mouth sores. He has been faithfully using Biotene for months, but it simply isn't enough. He has started using a rubber-finger style tooth cleaner for infants, because even the softest of toothbrushes still cause his mouth to bleed. The doctors will check out the mouth situation on Monday. I hate it that he has mouth sores. I don't want anything to hurt him or impede his ability or desire to eat, but I can't help but think that if this is the worst of it, he is still very blessed.

We continue to pray every day for our son. We still pray against side effects, for Davis' emotional well-being, for the health of the kids in which he comes in contact, for healing and CURE. I can't help but feel that there are many life lessons to be learned from this experience, and I thank God for the blessings - the silver lining in all of this - that we have received and continue to discover. We still pray for courage, strength, and endurance, because sometimes they appear to be in short supply. We know that we still have such a long road ahead. We are so moved by your thoughts and prayers. I can only imagine how families are crushed under the weight of carrying this burden - this battle - alone. We are overwhelmed and grateful for the support we have. Not one day goes by that we don't feel both amazed and unworthy of your relentless thoughts and prayers.

We will keep you posted.

Trying to Find That Routine Again

10/23/2011: 4:00 PM

I apologize. I only have a few minutes, so I will try to give my best to give a detailed abbreviated version. 



another long day of chemo



I did not go to chemo on Friday. Davis, Kyle, and my mom set out at 5:00 AM for the long day. I stayed home and ran some errands, attended a parent/teacher conference, and spent some quality time with Annakate.  To our surprise, Davis weighed 55 pounds! 55! He has lost nearly 25 pounds and weighs less than his seven-year-old sister. The doctors don't seem to be as worried as we are, so I guess that is a good thing. Davis did well without me being there. He sailed through his chemo.When it was time for the Peg shots, Kyle called me and put me on speaker phone, so that I was there to cheer and comfort Davis. Davis took the shots well. He cried, but I think anyone would. They were able to leave the hospital around 4:30, and they made it home between 7:30 and 8:00 PM.  A very long day.

tent's looking a little crowded

Annakate and I enjoyed our time together. I ate lunch with her at school, and when I picked her up afterwards, I let her decide what we were going to do. Shopping? Manicures?  Go out to supper?  Nope. She chose pie baking. We had a blast making a huge mess.  She did it all, and I, of course, was her assistant. She really enjoyed making the crust and peeling the apples, and we hurried to get it finished before Davis made it home. It was to be his surprise. I giggle a bit at the irony that Annakate doesn't like apple pie and won't eat any of it.  I guess the joy is in the baking.  And by the way, it's delicious.  I posted some cute pictures below.

The doctors have started taking metabolic panels to keep an eye on Davis's liver function. Many of the different types of chemo can cause potential problems with the liver and kidneys. The CMP test will measure the drug toxicity in his body. Kyle brought home the first report, and there are a great deal of levels that are out of whack. I plan to call the clinic tomorrow just to hear a professional reassure me that this is normal and there is no long-term liver damage going on.

This morning we went to church as a family. It was the first time in a long time. When Davis is sick or his counts are low, one of us stays home (we rotate) with him, and one of us takes Annakate. We are aware that his counts will start to drop because of the recent chemo (usually takes a few days), so we took advantage of the opportunity.

Davis still continues to sleep a lot. He just can't find the energy to sustain himself for long periods of time. Provided that his class is well -- there were many sick last week -- he is planning on trying to go to school tomorrow. I am not sure if he will make it a full day; he many not have the energy to complete a whole day. School does help him keep his mind off not feeling well, and he is far more productive at school than he is at home.

I want to take a minute to thank the Oakland school and community.  I was able to stop in on Friday for a visit. Some of the teachers and students made Davis a giant poster with well wishes on it. He loves it. It is hanging in his room.  The Oakland community also collected nearly 200 new hats for a "Hats Off for Cancer" drive. Davis will be donating them to the Children's Hospital on their behalf.

We continue to feel such love and support, and we are so grateful for it. We appreciate your prayers and positive thoughts, because that is what is getting us through this.

Hoping and praying for good health and a productive week.

We will keep you posted.