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.

Feels Like Snow Days Around Here

10/20/2011:  9:54 PM

We were released from the hospital a day earlier than scheduled. Davis's ANC was 240 and on the climb. He was given the orders to eat and rest. He was homebound while his counts were building. The goal was to get his ANC over 750 and his platelets over 75 so that he could receive the chemo that he missed last week. 

The last two days have felt like snow days. We were all home together for huge chunks of time.  Davis couldn't go to school because of his counts, Annakate was dismissed at 10:50 every day because of parent-teacher conferences, and Kyle was in and out on account of the rain. I love it. The kids have built tents, played Wii, completed projects, wrestled, etc. It's been fun - and loud.

One of the highlights of the last couple of days was when Davis's friends, Wade, Gage, and Drew, popped by for a quick visit. They were running around in no time. Davis was able to get the scoop on what he has missed in the last two weeks at school.  I love how the boys just pick up where they left off and no matter how pale, thin, or sick Davis is; it doesn't seem to phase them. 

Davis is still struggling getting his days and nights straightened out. He goes to bed at 1:00 or 2:00 AM and attempts to sleep in until 9 or 10 AM. I try to wake him up at a decent time but it is near impossible. We send him to bed at a decent time, but he manages to keep busy with a notebook (writing and journaling) and a flashlight.  The English teacher loves this, but the mom wants him to sleep.  He has draped blankets from his top bunk down around his bottom futon bed. Then, he placed a card table inside of the tented area and draped more blankets over the card table.  It is inside the tent within tent that he sleeps. It is a struggle to check on him because of all of the blankets.  I tried to lay down in it for awhile- you know, to encourage him to go to sleep, but it was simply too small.  My days of sleeping under blanket-covered card tables are long over.  I headed back to my bed. I am sure it is a mom thing, but I can rarely sleep when my kids are awake, so I would get up and check on him every twenty minutes or so. Finally at 2:20 AM, he was out.

Annakate is doing quite well in school. We are so proud of her. I was a bit worried because we have pushed a lot of the school/homework/reading responsibilities back on her. We struggle sometimes to keep the school routine of studying for tests and reading that we kept in past grades. It is such a relief to see that she is a very bright girl who has managed to do well despite not receiving the one-on-one attention that we have given to her and her schooling in the past. 

Davis has been craving spicy foods as of late. The docs and nurses say that this is pretty normal. Chemo changes and kills the taste buds, and people tend to crave spicy food because of the taste. Davis has eaten a lot of Thai, Mexican, and chili the last couple of days. We don't mind at all. We are thankful he is eating.

Davis went to Sarah Bush and had a CBC (blood panel) and a CMP (checks metabolism and nutrients in his blood). His blood was a bit problematic. At first, it was runny and then it was clotty.  The lab tech finally was able to get enough after a few finger pricks. St. Louis called us a short while later with some awesome news. Davis's counts are making a quick comeback. His white blood cells were up from .8 to 2.8 (healthy kids range between 5 and 10). His hemoglobin was holding at 10.3. His platelets were up from 64 to 160 (healthy kids range between 150-450), and his ANC was 1148!  His ANC was 240 on Tuesday and was 0 one week ago (healthy kids are greater than 1500).  Even though his counts will take a hit from the chemo tomorrow, he is cleared to go to school on Monday as long as there are no sick children in his class. 

Tomorrow, Davis will receive his chemo via his port at 8:30 AM. He will then receive chemo via spinal right before lunch. He is still placed under anesthesia for the spinal taps.  Between 4 and 5 PM, he will be given the Peg shots, and he will be allowed to come home. Typically, there is  24 hour wait between the chemo injection via port and the Peg shots because the Pegs can weaken the effect of the methotrexate that is shot into the port.  However, they are very confident that the time they are giving between the doses is sufficient. I pray that they are right. I am still a bit nervous. The longer the wait, the better, I think.

We still continue the same fervent prayers that we have prayed from the get-go. We pray that Davis is spared from short term and long term side effects. We also pray for his overall health and the health of his classmates, so that he may attend school for as long as possible (and we want his classmates to stay healthy too. It isn't fun being sick.) Most importantly, we pray for his overll well-being, healing, and CURE.

I know I have often shared the fact that I draw strength and comfort from music. A few weeks ago, we sang a worship song at church that we sing every so often. It is pretty popular; it is called, "Healer" by Hillsong. Honestly, I had forgotten about this song until we sang it the other night. I'm not sure what it was about that night, the song, the heaviness of my heart, but it was like the song was written for me. It was as though it was crafted and existed for me when I was ready to need it. Over the last few weeks, that song has been swimming around in the back of my mind. When Davis was in the hospital and the doctors couldn't get the fever to break, when he would cry in my arms because the homesickness was too much for him to bear, when I was tired and the weariness began to deplete my patience and faith, I would sing, hum, whisper this song. I guess every person who has been on this road finds their escape - their way to cope. I think God provides me the music - the songs - because he knows best how to reach me. I am grateful.

I am attaching the lyrics and the link with the hopes that this might bless someone else who is struggling.

Healer

Hillsong's Healer

You hold my every moment
You calm my raging seas
You walk with me through fire
and heal all my disease

I trust in You
I trust in You

I believe You're my healer
I believe You are all I need
I believe You're my portion
I believe You're more than enough for me
Jesus, You're all I need

Nothing is impossible for You
Nothing is impossible
Nothing is impossible for You
You hold my world in Your hands

For me, the last line here says it all.

Again, we thank you all for everything. We appreciate and feel your positive thoughts, love, and prayers.

We will keep you posted.

Hospital Visitors: Grandpa and Grandma Fanello

Hospital Visitor: Uncle Randy Coffey

Hospital Visitors: Grandpa and Grandma Coffey

This was my view for nearly 15 hours every day
while Davis was in the hospital

The long-awaited smile. Getting ready to
leave the hospital.

Homeward Bound . . . Maybe

10/18/2011:  10:15 AM

Davis is feeling so much better. He has conquered nearly everything on his checklist to be released from the hospital. His ANC (immune system) was in the 60s yesterday, and today it is over 200! No fever for over 48 hours now. The nurses seem extremely confident that we will be released today despite Davis not having an ANC over 500.  They are under the impression that Davis can count build at home.  We are still waiting to hear from the doctors. They make the call. 

The biggest stress yesterday was finding a hotel in the St. Louis area for Wednesday evening.  Davis has to be back at the hospital at 6:45 AM on Thursday for a spinal, so it makes sense to spend the night before. I am not begrudging the Cardinals of their success by any means, but our timing and their World Series timing collided.  After some frustration, I left the task up to Kyle, and he found us a room.  Thanks, honey.

Davis managed to do a bit of homework and eat some yesterday evening. He has his days and nights mixed up too. He was awake from 5:00 PM to nearly 1:00 AM.  He watched a couple of movies and tinkered around during that time. Of course, he is asleep now. He is doing a better job at taking his medication too. It is still a drawn-out process.

Wait. . . Talking to the nurse . . .We are going home! Today!  The doctors have moved his LP (spinal tap) to Friday because they are pretty sure his ANC won't be over the needed 750.  With the chemo starting on Friday, Davis will have to be admitted again on Friday evening (or Saturday morning) to receive Day 2 of chemo - the dreaded Peg shots.  Since the clinic will be closed on Saturday, he will have to receive them in-patient.  Because of Davis's anxiety, the doctors have given us the option to stay in a hotel on Friday evening.  Davis would come in on Saturday morning and be admitted for the day. Ahhhhhh.  I can't wait to sleep in my own bed and see Annakate. I am not looking forward to the three hour trip home and the road construction, and from what I have heard, it is freezing outside. When we were admitted last week, it was nearly 80 degrees. Needless to say, I am a bit underdressed for the weather. I am still in flip-flops. Poor planning, I guess.

Nothing else going on. We will hopefully be discharged sometime this afternoon.  Past practice has usually been between 3:00 and 5:00 PM.

Thanks for all of your prayers and positive thoughts.  You are fantastic at rallying around us in our time of need.

We will keep you posted.

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.