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.

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.