His Counts Aren't in a Hurry

10/17/2011:  11:25 AM

A lot of the same here.  Yesterday, we had a few visitors, and that helped to break up the monotony.  Davis still sleeps a great deal of the time.

The doctor stopped in shortly after Davis awoke to take some morning medication. As she was talking to us, he became very quiet and reserved. I think it dawned on him that he wasn't going home today, and there is a good chance that he will be here on Tuesday as well. 

What the doctor had to share was promising. None of the cultures that were taken grew any bacteria or fungus. That rules out some of the most serious infection types. They have adjusted the super-antibiotic and he is now getting the proper levels. His metabolism was processing it too quickly initially.  His counts are beginning to climb. His white blood cells are up to 1.3 from .8, and his ANC is up to 65 from 30 something yesterday. His monocyte counts (monocytes are the little soldiers in your blood) are up to 35. This is a indicator that an ANC jump is coming.  The doctor seemed pretty sure that Davis would meet the requirements to start chemo on Thursday. That means that it is expected that his ANC will be over 750 and his platelets will be over 75. This is comforting since his chemo was postponed last week.

Davis did develop some blurred vision, dizziness, and a headache last night around midnight. The doctor on call was unsure as to why he developed these symptoms. The best guess is that the Benadryl given to pre-treat him before his super-antibiotic hadn't kicked in, and the combination of the two antibiotics running in his system at the same time was causing a bit of trouble, but that is a bit of a long shot. The important thing is that when he woke up this morning, the symptoms were gone.

From the medical point of view, the goal for Davis today is to count build and eat and drink.  It breaks my heart to think that a goal for a ten-year-old is to eat and drink. Just something I never thought of before cancer. From the mom point of view, the goal for Davis is to work on some homework.  His teachers are so kind and understanding; they are not requesting work at all. I just think if I can get him to do some, it may relieve some anxiety later on this week.  Essentially, he is going to miss two weeks of school and maybe more.  Anyone who has ever had to make up weeks of work and keep up with the new daily work knows that it can be overwhelming.

I wanted to let all of you know of a fundraiser being done on our behalf. Mandy Hanner, a friend and fellow teacher at Oakland High School, has organized a t-shirt sale. If you are interested in purchasing a shirt, you can print the attached order form, complete it, and mail it to her. The t-shirts are gray with orange writing and say "Team Davis" overlayed on an orange cancer ribbon. The reason for the orange is that it is the color for Leukemia awareness.  It also happens to be one of Davis's favorite colors and one of Oakland's school colors. So, I am learning to love orange. If you need more information or have questions, please email me at abcoffey77@gmail.com, and I will be sure to help. 

T-shirt order form:  Team Davis Shirt Order Form

We are so fortunate that Davis is making a quick recovery. Although the last few days have been draining and scary, the doctors assure us that Davis is responding to treatment appropriately. And while the stay has been longer than we have liked, we know that it could have been weeks. 

 We so love all of your prayers and positive thoughts.  We have the best support system imaginable. We are truly grateful.  We are praying that this is the last infection Davis encounters and that his treatment resumes. We never forget to pray for the requests that have become routine: no side effects, healing, and CURE.  We want nothing more than to have this illness behind us.  May God bless all of you who walking this journey with us.

We will keep you posted.

Slow Recovery

10/16/2011: 11:10 AM


Red Man Syndrome



Davis has made some marked improvements over that last 24 hours. He has been without fever for nearly 12 hours, and his counts are beginning to trend upwards. His ANC was 12 yesterday and is 32 today. It will need to be in the triple digits before we can head home.

The antibiotic used to treat staff infections caused the allergic reaction called Red Man Syndrome. Since he needs the antibiotic, he is pretreated with a counter medication before the antibiotic is administered. The antibiotic is then given over two times the normal time span to slow the reaction down. It seems to be working for the most part. He still has some redness and itching, but it does not appear to be as severe.



Scary, huh?



Davis did manage to eat yesterday. Actually, he ate more yesterday than he has in one entire week. We have had no luck today. He has slept a great deal of the day away. He still sleeps 15 or more hours a day. This slows down normal daily functions: eating, drinking, taking medication, walking. However, sleep still trumps those activities because it works as a coping mechanism while the body is fighting the infection.



Speaking of infection . . . we still don't have a confirmed diagnosis of what type of infection it is. All the docs seem to know is that it is responding to the high powered antibiotics, so it is probably a bacterial infection of some type. They can't identify where it is in the body either.

The doctors won't give us a timeline for being discharged. It depends on his counts. We are set for chemo on Thursday and Friday, and one doctor thought that we would be able to go home and make it back for Thursday chemo. She quickly followed with, "No promises, though."  I am still optimistic. 

Other than that, nothing else going on here. We just sit around. Davis does play on the computer some, but he won't watch TV. He just sleeps.

Thanks for all of your kind thoughts and much-needed prayers. Although we know we are never alone, it does get lonely here from time to time. Davis misses his home and his routine. But we know that we are where we need to be.  We are truly blessed to have such good family and friends who care for us so deeply. 


We will keep you posted.

Changes, Improvement, and Hanging Out

 10/15/2011:  12:51 PM

cousin jordan stopped by for
a visit

Disclaimer: I can't remember what I posted yesterday. The last few days have been a blur. Sorry for any repeat of information.

Yesterday started out pretty rough. Davis was weepy and defiant. The docs thought it would be best if Davis was given something to treat the anxiety.  He was sedated and slept for a good while. He was a new man when he awoke. He was cooperative and even went for a walk and ate a handful of popcorn. What a difference it has been.



a lot of sleeping going on



Davis's overall health has improved steadily. He ate a bit last night, and has even eaten some today. He is also drinking. He is still on a nutrient fluid drip, so I think between the both, he is staying well hydrated. He is even sleeping less, which is a sign that the infection has decreased. His counts haven't moved a bunch. His ANC (immune system) is up to 12 from 0. His white count is still critical at 0.4, and his hemoglobin dropped. He just finished his blood transfusion.

Davis spiked a fever of 101.8 last night. This is considered a significant fever because he has been on a broad spectrum antibiotic for days now. The doctor now believes that Davis has infection somewhere in his body, and that the ear infection is no longer the source of infection. While nothing has been confirmed or discovered,  it is likely that the infection is a line infection (infection in his port), bacterial infection in his blood, fungal infection, strep or staff infection. That narrows it down, doesn't it. The cultures are only 30% accurate, so we may never know.  The important thing is to kill the fever and have his counts recover. This means the infection, whatever it is, is gone.

The super-antibiotic that Davis has been placed on to treat the infection causes something called Red Man Syndrome.  95% of children experience this side effect. It causes his head to turn bright red and itch. If he develops this side effect, he will be given something to counter it.



comic relief arrived friday evening



We will be here for a couple more days minimum. Davis is well aware of it and has adjusted to it.  He aleady has his chemo scheduled for next THursday and Friday, so I think the doctors think that his counts will be strong enough to continue for treatment. If his platelets and ANC aren't where they are supposed to be, it will cancelled again this week and scheduled for next week.

We appreciate all of your thoughts and prayers that you are sending our way. Davis is doing so much better!!  Keep them coming; they're working! We no longer take for granted how truly blessed we are.

We will keep you posted.

Sleep-Filled Days and Sleepless Nights

10/14/11:  9:21 AM

For the most part, yesterday was uneventful. Davis slept most the day. The doctors would check in periodically and update us on what they knew. They believe the infection is the beginning of an ear infection. His right ear is red and there is a bit of fluid there, but no real infection has started. They are still growing cultures as well. 

In order for Davis to go home, he can not be symptomatic nor can his counts decrease. Neither of those two things are happening right now. Davis ran fever up until early this morning. We have to stay in the hospital for 24 hours after a fever breaks. We are hoping that today brings no more fevers. Davis' ANC was 0 when he was admitted, 43 yesterday, and 0 again today. His red blood cells were over 8 yesterday, and today they are 7.4. If he struggles with a headache today, he will receive a blood transfusion. In order to leave, Davis' ANC has to jump into the triple digits and continue to increase with no fluctuation. We are obviously not there yet, and there are no plans for us to leave. We will have to stay because his body can't fight an infection without help.

Davis is insanely homesick. He cried for two hours (almost until midnight) because he wanted to go home. He hates it here, and he acts out when he feels he has no control. Last night, he negotiated and argued with the floor doc about taking his meds. He kept saying to the doc, "I will take my meds if you let me get out of here." The doctor would respond, "You can not leave yet, but you are not going to get to leave if we can't trust you to take your medication." And then Davis would spout, "Well then, I am never leaving, because I am not taking the medicine." That went on forever. Our typical approach, the you-are-going-to-do-this-because-we-say-so, doesn't work anymore. Some days it seems like nothing does. He kept telling me over and over, "Mom, you have to get me out of here. Please, Mom. I am going to run out of here and go home and go to school tomorrow." Heart-breaking. Davis did take all but one medication before they gave him some medication to help with nausea. The bonus is that the nausea medication also sedates him. He was so worked up; sleep was such a blessing.

Davis continues to struggle with severe headaches, dizziness, and nausea. He rarely gets out of bed. It feels better to lie flat. He complains of headache when he sits up. He ate nothing yesterday, but did manage to drink 5 or so ounces of water.  The docs are not worried about the non-existent appetite, but he will have to be eating and drinking to be able to leave.

So if the cultures determine nothing, we are sticking with the ear infection diagnosis. I am not truly convinced that that is what it is, but I am not a doctor. I really have underestimated the importance of an immune system. It reminds me of jumping out of an airplane without a parachute. It is always going to turn out badly if you don't have something helping you out. In the jumper's case, a parachute. In Davis's case, an immune system - or doctors, hospitals, and IV meds - to help fight infection.

The doctors determine a goal everyday for Davis to accomplish. Today's goal is to drink and use the bathroom on his own. Oh the things we take for granted with our healthy children.

We finally have our own room. I was able to sleep on a couch last night. It sure beat the chairs that I have been sleeping in the last couple of nights. Thankfully, we have not seen many of the families with whom we have built friendships. Sadly, the floor is full of new faces. There are a couple of precious, little ones wobbling about. They are maybe 18 months to 2 years at best. Yesterday, the music therapy crew brought instruments, and there was a little dance party in the hall.  Those babies danced and beat drums for nearly an hour. It was refreshing and amusing. I don't know their names or their stories, but my heart hurts that they are here.

We want to thank all those who have texted or called and sent words of encouragement and prayers our way. You are far too thoughtful. Our most immediate prayers are for this illness to be resolved, for Davis to have peace and begin eating and drinking consistently again. And of course, we always pray against side effects and for his forever healing. 

Looking forward to and hoping for a peaceful day.

We will keep you posted.

Short-Lived Trip Home

10/13/2011: 9:59 AM

At around 7:45 PM last night, Davis spiked a fever of 101.3.  He convinced me that it was because he had taken a shower, so I repeated the reading 15 minutes later. 101.7.  Since he is neutropenic (low counts, ANC below 500) and has fever, St. Louis had to be notified immediately.  We were advised to go to the local ER and wait for transfer.

I think we arrived to the hospital at about 8:30 PM. Sarah Bush was so kind to us. Our nurse and ER doctor were fantastic. Davis' port was accessed and blood was drawn for cultures.  He was given a bolus of fluids. They later did a peripheral draw from his arm to test against his port draw.  The idea is that if his port blood draw is positive for infection and his arm draw is negative, it will point the doctors to a compromised port or port infection. After the draw, an IV antibiotic was started. 

The ICU transport team from Children's arrived a bit after midnight. After some paperwork and a quick examination, we were loaded into a hulk of an ambulance and driven to St. Louis.  For safety reasons, I was not allowed to ride in the back with Davis, but there was an opening between the cab and the back that allowed me to see what was going on. The ride was pretty uneventful. Davis slept the entire way. He didn't wake up for any of the experience.

We arrived on the 9th floor a little after 3 AM.  There was a steady stream of visitors -vitals techs, nurses, doctors- when we arrived. Another blood draw was done to test his blood for a fungal infection. A bit after 4 AM, it was lights out. They repeated the IV antibiotics this morning, and Davis was given another bag of nutrients with potassium because his potassium count had dropped. No word on the need for blood or platelet transfusions yet.

A quick briefing this morning let us know that Davis will stay here in the hospital until his fever has been gone for 24 hours and until his counts start to recover. The doctors are hoping to have more information as some of the cultures start revealing information. They will be making rounds soon.

Davis is sleeping peacefully. He has only been awake for about 8 hours of the last 24. Yesterday, he ate a cheese stick and two baked Lays potato chips. That's it.

We appreciate your prayers. We are praying that whatever this is, it is minor and Davis will be well soon. We thank you in advance for doing the same.

I will keep you posted.

And Then There Were Lows

10/12/2011: 6:44 PM

The last couple of days have been a blur.  Davis developed a migraine on Monday that intensified on Tuesday. He was experiencing nausea and dizziness.  He explained the feeling as non-stop car sickness.  He didn't have much of a fever, and his chemo on Friday wasn't difficult or sickening by any means, so I called the doctor.  The doctors (a couple doctors/nurses discuss it and make a decision) decided that Davis needed to be admitted for pain control and observation.

Davis and I left Tuesday evening and arrived in St. Louis around 7 P.M. We have to enter through the ER because the hospital is closed after regular business hours. We were given an isolation room (a courtesy and necessity for immuno-suppressed children). 

There was a bit of trouble when Davis' port was accessed. The nurse was unable to get a blood return (drawing blood back into the IV tube to make sure that blood can be pulled out and medication can go into the vein). Another nurse tried unsuccessfully. There was some brief talk about a defective port and/or a clotted port. The IV therapy team was called in. After a long wait and a brief visit from the IV therapy team, Davis' port access was stabilized and working.  The nurse pulled blood for cultures and CBC and a bag of fluids was started.

Hours passed.  Davis and I watched TV to numb our minds and drown out the cries and screams of babies and children in other rooms down the hall.  Not much on in the wee morning hours.  Did you know that giant jellyfish are destroying the fish market and swarming the beaches of Japan?  Did you know that sharks are pulled onto boats and their fins are hacked off, and then they are thrown back into the ocean to drown?  Yep. That's what we learned. Disgusting, huh.

We received some partial results a little after midnight, but his electrolytes had clotted so more blood had to be drawn for another test.  Davis was agitated and adamant that he was not going to 9th floor, and after hours of crying, it was decided it was best that he stay in the ER until a definitive decision was needing to be made.

Test results revealed that Davis was dehydrated - nutrient depleted. This is most assuredly a result of his refusal to eat and drink enough to sustain normal function. He had lost a pound as well. 58 pounds now. His counts were low. His white blood cell count was .2 (healthy kids between 5-10), and  his ANC (absolute neutraphil count - the immune system. Healthy kids are over 1500) was 0. Zero! We are so fortunate. Many cancer kids experience this, but this is our first zero ANC and we are three months into treatment.  Because of his low ANC and his lack of good health, Davis is homebound until he feels better and his counts improve. He also had a low calcium reading, so we are going to supplement his diet (if that is what you call it) with Tums or calcium chews.

We were finally released from the ER at 3:00 AM. We headed to a hotel. Sleep was well overdue. We made it home around 4 PM this evening. Davis slept most of the way home. It was one of the few times that I actually enjoyed the drive. The rain was peacefully drizzling down and the colors on the trees seemed abnormally vibrant. So calm, so serene.

His chemo scheduled for Thursday and Friday has been postponed a week. He doesn't have the counts to support chemo as of now.  He will go to Sarah Bush tomorrow to have another CBC draw. This will see if his counts have improved. That is the goal. If his hemoglobin or platelets have dropped, we will make another trip down to St. Louis tomorrow for transfusions. If he still has this migraine and isn't eating or drinking, we will be heading back as well.

There's no place like home. We were gone for about 24 hours, but it has felt like days. Annakate greeted us with whining. It didn't take me long to see her runny nose. I grabbed the thermometer. Yep. a low-grade fever. She's sick. It looks like a cold or something along that line. Davis and Annakate have been quarantined to separate sections of the house, and I am dividing my time and attention between the two. With Davis' immune system being non-existent, it is vital that they stay away from one another.

My poor babies. You don't think about health much until you are not healthy.  I pray that my children feel better soon.  It is of utmost importance that Davis starts eating and drinking. We continue to pray against all of the side effects and for complete healing, but getting him to a healthier state and getting him back to school is our goal this week. Davis does so much better when he has routine in his life.

Thanks for your support.  We appreciate all of the cards, texts, calls, and emails that you are sending our way.  Very thoughtful.  You never cease to touch our hearts with your kindness. 

We will keep you posted.

Fewer Blogs = Good Days

10/10/2011: 3:30 PM

I apologize for doing a poor job at keeping up with the blog. When Davis is well and his ANC is high enough, we sqeak in as many normal activities as possible. We have been busy lately. 

a young monet, perhaps?

Recap of last week . . . Davis had a great week.  He was able to get up early on Wednesday to attend his first student student council meeting.  The group is getting ready to fundraise for polio. He decorated his "Pennies for Polio" can a few days ago.  He sure has been completing a lot of projects as of late. After school, we ran to Sarah Bush for bloodwork before rushing back to Charleston for his painting class.  He finished his Monet-style watercolor painting.  He began feeling ill shortly after eating supper, so we ended our evening there. I had a hunch that his blood might be a bit off since his energy and appetite dropped off drastically.

field trip fun

Thursday finally arrived. We had to get up super early to go to school because Davis and his class had a field trip to the Challenger Space Center in Bloomington. While the teachers awaited for all of the students to arrive, I armed myself with a bucket of Lysol and bleach water and wiped down all of the seats of the bus. I worked up a sweat at 6:20 in the morning. I rode with a few other mothers as we followed the bus up. The field trip was amazing. I had just as much fun as the kids did. Davis actually thinks he went into outerspace. If you are not familiar with the Challenger Space Center, the kids are given jobs similar to what Mission Control and astronauts would have. Then, they go into this simulated space shuttle to try to complete a mission. They have to read gauges, report humidity, put together a probe, communicate with mission control, measure items using robotics, etc. It was very hands-on. The afternoon consisted of hands-on lessons in physics - a concept hard for 5th graders to understand. The kids were so well-behaved and everyone seemed to really enjoy themselves. 

Friday was supposed to be a quick trip to St. Louis. Our appointment was at 10 A.M. The only chemo Davis was to receive was a push through his port (basically a shot in an IV) and a 45-minute platelet transfusion.  Normal platelet levels are between 150-400. On Friday, Davis was at 8. Yikes! Unfortunately, Davis can only have a certain type of platelets because of his blood type and the hospital was out of matching platelets. They had to be ordered from the Red Cross, and the Red Cross truck didn't arrive with the platelets until 2:00 PM. No real complaints though. We just hung out in the chemo lounge. Davis played on the computer and I did a lot of nothing. We were finally on our way home a little after 3 P.M.  So much for a short day. 

I can't believe I did that to him

We pulled into the driveway on Friday evening around 6 P.M. Davis and Annakate were flitting about the car. I was barking orders to help carrying in the collection of stuff that had made it from the house to the car over the course of the last couple of days. I loaded myself down with backpacks, a computer bag, my purse, a blanket and pillow, and used my hip to shut the door to the car. Before I knew it, I was flat on the pavement. Davis, who was experiencing some car sickness, had stepped out of the car and kneeled down in the driveway to allow his dizziness to pass. Obviously, I didn't see him and tripped right over him. Figures. Just when the doctor warns us about his low platelets and no bumps, scrapes, or hits. . . Davis was fine. I did call the doctor because within seconds - not minutes - seconds, the bruises started to appear.  Poor guy. His legs look horrible, but thankfully, they don't hurt. He gets a kick out of showing people his bruises.  He says, "Hey, look what my mom did to me." 

a turtle and a pig

Davis's appetite increase was short lived and he has fallen back into his pattern of not eating or drinking very much. He was back down to 59 lbs. from 61 lbs. the previous week.  Kyle has challenged him to weighing 70 pounds by Christmas, but that seems a bit out of reach at this point. 

Davis enjoyed pottery on Saturday.  He ran out of time to glaze his turtle because he is in the process of making a piggy bank.  Definitely a work in progress.  

We found out on Friday that Davis is to avoid pumpkin patches, straw, hay, and farming in general. There are many molds that grow on those things and on dead leaves and such around this time of year, and those molds and fungi are what cause serious lung infections in children with suppressed immune systems.  Davis complained quite a bit when he found out that he couldn't go to the pumpkin patches he has gone to his entire life, but so be it. There will be next year. 

pennies for polio project

Davis starts the next phase in the consolidation phase this week. It is shorter (41 days) but appears to be harder. He will have chemo on Thursday and Friday of this week. He will receive methotrexate (a chemo Davis doesn't particularly do well with) through his port and via spinal in addition to other chemo on Thursday. On Friday, he will receive another set of Peg shots.  If his counts (ANC and platelets) aren't high enough for treatment, chemo will be postponed for a week.

We will keep you posted.