Slow and Steady Wins the Race

3/3/2012: 7:20 PM

Our day is just getting started. Davis and I watched a couple of family movies never heard of last night on hulu, and he finally closed his eyes around 2:00 AM. Between staying up late and being pumped full of Benadryl, he didn't get up today until noon.

He has spent the majority of the day in bed. His lovely nurse unhooked his tubing and tower at 6 PM, and he is free to roam about the floor with a mask on until 8 PM.  It is amazing how free one feels when he/she is not lugging a tower full of machines around. We went on a ten-minute walk, and then Davis grew tired. He is back in bed.

Free from tower! Free from tubing! A two-hour break.

Goofing around in the elevator on our ten-minute walk.

His counts today revealed some improvements. His ANC has climbed to 30!  It's not the triple digits that we are needing, but hey, you have to start somewhere. His monocytes dropped from 7 to 2, so chances of seeing a huge jump in ANC are slim, but we have God on our side, so anything is possible.

I weighed some of the positives and negatives of being here nearly a week. I think I will share.

Random photo #1: Davis looking for tape.

On the weekends, everyone clears out and there are very few people here.
Perks: You don't have to wait long for a ride in the elevator.You don't have to wait in long lines in the cafeteria.
Drawbacks: The skywalk bridges from building to building are closed, and you have to walk outside and around a bunch of stuff to get from building to building. Private playroom time is closed. The gift shop, the shopping mecca of this place, closes early.

Our room with a view.
Perks: We are on the B side, so we have a couch. Pick up takes five minutes, and we have a housekeeper. Plus, Davis hasn't been pestered by his little sister.
Drawbacks: Technically, we have a half a room and the window is a bit drafty. Roommates  . . .we have been blessed with some good ones, but it seems as soon as we grow accustomed to one, he leaves and we have to start all over with a new one.

Random Photo #2: Davis just sitting in bed.

Sleep.
Perks: We can sleep whenever we want and for as long as we want.
Drawbacks: There is nonstop traffic in and out of the room. Oh, and roommates don't share our schedule. Plus, we pretty much sleep fully clothed the entire time. Yes, my sleep clothes and my day clothes are mostly the same.

Food.
Perks: We don't have to cook for ourselves, and we have dibs on one-sixteenths of a fridge.
Drawbacks: I can only handle so many grilled cheese sandwiches and french fries. We eat out of sheer boredom.

Disconnect from the world.
Perks: We have no idea what is going on out there in the real world.
Drawbacks: We have no idea what is going on out there in the real world. A couple of days ago, I was walking outside in my flip-flops in beautiful 70 degree sunny weather. Today, I was walking outside in my flip-flops in beautiful 41 degree sunny weather! Totally didn't see that one coming. Lesson learned: never determine your attire on the basis of what it looks like from your window view.

Showers, baths, and the like . . .
Perks: For Davis (and me, I suppose), showering is optional. So is hair combing and teeth brushing.

The shower in the bathroom that I share with all parents
and grandparents on ninth floor (and some from seventh floor too). This
photo gives it justice it doesn't deserve. Reminds me of camping.

Drawbacks: Besides smelling, Davis still needs my help bathing because of his port access and tubing, and that has to be a bit embarrassing for a ten-year-old boy. And I can wait in a line for a long time for a nice, hot shower three floors down, or take my chances in the parent lounge bathroom. I'm not really complaining; the conditions are the best they can be for a hospital.

We want Davis to be good and healthy when we leave, so we don't mind the wait. Another case of the end justifying the means. We pray that his counts recover steady and strong. God bless you all for your positive thoughts and prayers. They mean so much to us.

And although we are in good spirits, there are so many children here who desperately need prayer. There are several children on this floor whose parents, for whatever reason, cannot be with them. I see them sit in their rooms all day and all night with no company. The nurses do a great job compensating for the parental absence, but it's not the same. My heart is breaking for one of Davis' roommate. His father has Shingles, which can be deadly to immuno-compromised children, so he isn't allowed to visit. The roommate tried to call his mom this morning, but she hasn't returned his phone call as far as I know. He can't go home because of his father's Shingles, so he will be here until his father gets better or until his mother agrees that he can stay at her house. The young man doesn't seem to upset about his predicament, but I am. Sad, huh. I just feel so blessed to be able to watch over Davis day and night and keep him company. Please pray for the sick children - the children you have never met - who need to be healed from cancer.

We will keep you posted.

A Whole Lot of Nothing Going On

3/2/2012: 7:14 PM

Yep. Still here. Not much of any change to report. Davis' ANC (immune system) is still zero. His platelets have dropped a bit too. He did have a four point increase in monocytes, so I am hoping that is a sign that his ANC is on the way up. A floor doctor told Kyle this morning that she has had patients that were in the hospitals for four weeks waiting on counts to build. Praying that is not the case here.

Just took this picture.

Kyle brought Annakate down last night. Despite having the worst of Fifth's behind her, she was not allowed on ninth floor. She is no longer contagious to healthy children, but no one was taking any chances with immunocompromised children. Kyle booked Annakate and me a hotel room, and he stayed here while we enjoyed a little girl time. I had not seen my baby since Sunday, so I was all too excited to be hanging out with her again.

The plan for the two of us was to sleep in and get a little shopping done. Despite having a pretty good sense of direction, I have an attachment to my TomTom for city driving, and it didn't make the trip. Well, instead of shopping, we spent the morning trying new routes to get to Children's.  I was pretty lost. Annakate served as the navigator piping directions from Kyle on my cell phone. When we finally made it back to Children's, we decided to walk to lunch and piddle around outside.

I took Annakate's picture in front of every cluster of blooming flowers we saw.
I think we both have spring fever.

Kyle and Annakate headed home this afternoon.  I miss them so much already.

We have a new room yet again. We are finally on a B side (a side with a window and a couch).  Yay! I slept three nights in a chair that shifts into a bed of sorts, so I am very thankful to be on a couch tonight.

New view.

Too funny. The nurse went into the bathroom, the door shut, and the
lock jammed. She was trapped. Several nurses came by to try to open the door, and
several nurses came by to laugh. Finally, maintenance was called, and she was freed.
The door no longer locks.

Davis has been finding ways to pass the time. Playroom time, one hour a day, is what he enjoys most. Kris, a ninth floor life specialist, is a big help and does little things to make him feel special.

Other than that, there is not much going on.  We will watch another movie tonight. I think Star Wars is what he picked out, and we will wait for counts to build.

We are praying for higher counts and a healthy son. We thank you for doing the same. Davis will remain on antibiotics until his counts recover. They are fighting any potential infection in his body for him now.

A picture of Davis and Wally taken yesterday.

A picture of Davis and Nelle taken seven months ago.
Davis has changed so much - and so little - in such a short amount of time.
Same beautiful smile.

We will keep you posted.

Been Four Days, Feels Like Forever

3/1/2012: 10:42 AM


Despite being stuck in the hospital, yesterday was a pretty good.

Davis woke up at 11:00 AM and  made sandwiches with Kris, a life specialist here on 9th floor.

He then played bingo and won some pretty neat prizes. He plays bingo from his room. The bingo game itself is televised, and when he has a bingo, he phones in and talks directly to the announcer on the television. It's pretty cool.

Caught his expression when he called in his first bingo

It wasn't long after bingo was over that Davis' Grandma and Grandpa Coffey came by for a visit. They visited for a few hours. It was a treat to have someone else to play with during Davis' scheduled playroom time.

Yesterday evening was hectic. His supper, which was ordered at a little after 5:00 PM, didn't arrive until 6:30 PM. Davis' roommate became very sick, so Davis and I hung out in the 9th floor playroom for quite some time. Davis was still trying to eat his supper at 8:15 last night. We finally settled in and watched movies on the computer until the wee hours this morning.

I told Davis to smile because I was taking a picture. He didn't bother to
look at me . . . but he did smile. I guess I wasn't specific enough.

He is sleeping right now. He has been sleeping until lunch time. The 8:00 AM dose of Benadryl really wipes him out.

I just found out that his ANC dropped from 15 to 0, and his platelets are down to 40 from 53 yesterday. The doctors are continuing the two antibiotics, because if he is fighting a virus, his body can't fight the infection. They are still wanting his ANC to be close to 500 in order to leave, so there is no discharge in sight. Davis does have a swollen knot on his forearm, and no one seems to know what it is, so the doctors are keeping an eye on it. I am keeping a better eye on it.

Your thoughts and prayers are much appreciated. Davis does feel great, and he is grateful to be in the hospital and not be feeling horrible.  I am not sure what we will do today. I know we will try to schedule some playroom time, but the rest of the day is up in the air.

We will keep you posted.

This Isn't the Vacation We'd Imagined

2/29/2012: 10:48 AM

Happy Leap Day!

Well, now that we are over the disappointment of not being in Hawaii (or on the way to Hawaii) right now, we are thankful that Davis spiked his fever before we were on a nine hour flight or hours upon hours away from St. Louis. Plus, Annakate developed quite a rash on Monday. Kyle took her to the doctor on Tuesday morning (Yes, that makes five doctor visits in three months if you are counting.), and she has Fifth's Disease, which is a pretty common viral infection that has been plaguing the elementary school this year. Could you imagine two sick children - one in the hospital - in Hawaii? 

Due to a Benadryl dose at 8:00 AM every morning, Davis sleeps most of the morning away. When he does wake, he eats lunch and then we look for ways to kill time. Mostly, he plays his DS or writes stories or creates powerpoints (sure signs that he is missing school). In the evening, we watch movies on hulu and eat popcorn. He doesn't fall asleep until well after midnight. There goes our routine.

Davis had just been given Benadryl before eating the pizza I made him.
He had to eat it with his eyes closed. He was too tired to eat with his eyes open.

For one hour every day, Davis is allowed to go to the Playroom. Of course, it is after it is closed and has been cleaned for the day. Since Davis doesn't have an ANC, he isn't allowed to go many places. He is confined to his room or the floor with a mask. He can go down to the playroom for one hour if he wears his mask, but some of the staff still didn't like the idea. So he gets one hour to play in the playroom with me - only me. We usually play Wii (and I think that gets old because I am really horrible at some of the games Davis likes) or do art projects.

Wii

He created a pretty cool dinosaur picture.

Davis has been fever-free since we arrived. All of the cultures are negative, meaning he doesn't have a port infection. The doctors don't have an answer as to what caused the fever on Sunday. A couple of theories. . . A neutropenic fever. This happens when the body's counts are critically low. A fever is a natural response to this. A viral infection. He doesn't have any real symptoms of a virus, but sometimes when the immune system is shot, symptoms don't appear because the body's antibodies can't fight. Ok. That's not very clear. Let me try again. When a person is sick with symptoms, the symptoms are created by the battle between the virus and the immune system attacking it. If your body doesn't fight the virus, the virus hangs out and you can be asymptomatic. My guess is that it was a neutropenic fever, but we may never know.

Kyle's visits are the highlight of our day. He comes down for
a few hours every evening. His drive back and forth is longer
than his visit time.

We had to move from our beautiful view on Monday morning. We are now sharing a room with an 11-year-old boy. He is shy (just like Davis), but he and Davis have a lot in common. Sadly, their sleeping schedules are nearly opposite one another. When one's awake, the other's asleep.

Davis' counts have been incredibly low the last couple of days. Yesterday, he had only 0.3 white blood cells (healthy 5-10), zero neutrophils, and an ANC of 0. Today, we have seen a bit of improvement. Whereas his red blood cells and platelets have dropped a bit, his white counts have stayed the same, his neutrophil count has increased, which has bumped his ANC to 15. We have to be leaping and bounding our way closer to an ANC of 500 in order to go home, so I guess 15 is a good start. I just hope and pray that Davis' ANC gets a little momentum because inching our way to 500 fifteen points at a time is going to mean a very long hospital stay. As for now, a discharge time is not even open for discussion.

Random photo. A view from outside the playroom window.
A blooming crocus puts me in the mood for spring. Davis
had no interest in the flowers.

The positive thoughts and prayers are working. The doctors and nurses comment daily as to how healthy Davis looks. (I think he looks sickly, but compared to others, I guess not.) Plus, if you have to be in the hospital,  I guess it is better to be in the hospital and feel great than to be in the hospital and be very sick. Thank you. We are looking forward to coming home and finding our routine again.

We will keep you posted.

Wish Come True + Fever = Postponed Wish

2/24/2012: 4:40 PM

Davis' counts today weren't spectacular by any means. His red blood cells were 8.1 and platelets had dropped to 37. Since his numbers were trending down, the staff decided to transfuse both platelets and red blood cells. He was pre-medicated for his platelets before it was discovered that there were no exact platelet matches to be found in the Children's blood bank. Since Davis had such a severe allergic reaction to platelets, he may only receive his direct blood type. He received his chemo, his red blood cells, and we will head back down to Children's on Monday for his platelet transfusion.

We received his new roadmap (course of action) for the first phase of the Maintenance phase. Each phase will last approximately 58 days, and Davis will have about 11 phases. The first 58-day phase will consist of a couple of spinals and a bunch of oral chemo and steroids. I am asking - no, begging - for prayer now because I know how much Davis hates taking medicine. You would think that eight months of taking medication daily, he would be used to it. He still fights us nearly every day. The bright side is that we are inching our way to the end of cancer treatment, and we will be making fewer trips to St. Louis.

Other than for his transfusion on Monday, Davis' next visit to Children's (Lord willing) will be on March 9th. We are going to enjoy the break.

We ask that you pray for Davis' health and well-being while we are vacationing.

***************************
2/24/2012: 10:30 PM

Ms. Keck and Ms. Green, our local Make-A-Wish representatives, dropped in with some fantastic bon voyage gifts for Davis (and Annakate). Boy, it was like Christmas! We also received our plans, which included some amazing activities (snorkeling, Pearl Harbor, etc). Some time ago, Davis wished to see Pearl Harbor (He has read a few books on it). His wish was granted and our trip to Hawaii was planned. Yay!! I haven't really mentioned it much because there are a lot of "what ifs" that surround the trip. Plus, if Davis isn't well, it would have to be cancelled, so I decided to mention it when it looked like it was a for sure thing. And now it is! I will be sure to take lots of pictures to share.

Ms. Keck and Ms. Green at our little Make-A-Wish celebration.
Thank you, Make-A-Wish!!

****************************
2/27/2012: 10:26 AM

Late yesterday afternoon, Davis spiked a fever. We headed to the SBLHC ER to check it out, which is the routine. When we got there, Davis no longer had a fever. Great. That always happens. I am sure the doctors think I am crazy. It wasn't too long into our wait that Davis became flushed, so I asked the nurse to take his temperature again. Yep. 102.8. I'm not crazy. When Davis' bloodwork came back, I knew we were headed to Children's. His ANC (absolute neutrophil count (basically the immune system)) was 12 (healthy kids run between 2000-3000 or higher), platelets 11, and white blood cells were less than .4 (healthy kids range between 5 and 10).

Hanging out in the SBLHC ER

Even though he was pre-medicated with Benadryl, Davis still had an allergic
reaction to the antibiotic Vancomycin. It's called Red Man's Syndrome, and it's very common.

We had to wait on Stl Children's ICU ambulance transport because Davis was neutropenic. We were finally to Children's and settled into a room at 1:40 AM, and lights out came at 3:20 AM. It had taken eight hours of waiting and transport, which makes for a long evening.

transport team

Davis has been resting peacefully (a gift from the Benadryl given to him every six hours or so) since the ER visit. He hasn't eaten anything since yesterday afternoon. The docs are flushing him with fluids so dehydration is not a concern. He is being given powerful antibiotics via port every 6-8 hours. C-Diff is a concern, but the importance of the antibiotics trumps the potential C-Diff issue. As of now, Davis does not have fever, and there is not a known cause. Davis has virtually no other symptoms, so now it is a wait-and-see game. The doctors are starting to do their rounds, so I am sure I will know more later. All I know as of know is that his counts are still trending downwards. His white blood cells are now 0.1, platelets 3, neutrophils 0, ANC 0.

My guess is that we will be here for at least a couple . Typically the policy is that Davis has to be fever free for 48 hours and have an ANC trending upwards close to 500. We have the fever free part. Half way there.

Hawaii has been postponed. Dr. Schapiro, Davis' doctor, felt horrible and offered to go in his place while her colleagues took care of him here. (Everyone here has such a great sense of humor. Davis won the award for lowest platelets on the floor this morning.) She said it would be a sacrifice, but she likes us that much. Nah, she's terrific. Lauren, our wonderful Make-A-Wish coordinator, was completely understanding, and we will fulfill Davis' wish when he is well enough to go. He's disappointed, but spiking fevers are out of his control, and I am thankful that it happened now and not in Hawaii.

A picture of Davis right now.

We have a nice room with a great view of the park.

Please pray for Davis. He has a lot of anxiety and does not do well with hospital stays. Please pray specifically that this is not a port infection. Port infections are serious and his port would be removed. We thank you for your wonderful concern and support. I love that we never feel alone.

God bless you.

Keep you posted.

R.I.P. Carmen

2/24/2012:  3:20 PM

Yesterday, Carmen, Annakate's bearded beta, passed away.  He has been pretty bloated for awhile, and yesterday morning, it was showing all the signs signs of dropsy, a fatal fish disease. I am not a fish expert and I know of no veterinarians who care for fish, so I did what every mom with a computer does, I googled it. And sure enough, there was the information I needed. Sadly, the fish was dead a couple of hours later.

Luckily, Annakate is not sentimental about her fish. We had a short and sweet ceremonial flushing today. I know it sounds crazy, but I think flushing a fish is like some sort of rite of passage in childhood. Anyway, that was that. I think I will miss looking at that little fish every day.

I get such a kick out of Annakate most days. Today, I asked her to refill the Dixie cup holder in her bathroom.  Boy, did she.

Kyle took Davis to chemo today. I had to stay home because I had the flu this week, and didn't want to risk putting any immuno-comprised children at risk. I will gather all of the details from him and update later. Davis' ANC (neutraphil count/immune system) was only 12 when it was checked today (healthy kids run btwn 2000 and 3000). Yikes!  But Davis feels well and is in good spirits, and that is most important.

We will keep you posted.

Thought I would share a couple of photos from this week  . . . .

My backyard early Tuesday morning. I absolutely love my backyard.

Annakate made good use of her day off on Monday. Not much
to shoot at with her little BB gun.

Time Marches On

2/22/2012: 7:20 PM

Compared to Davis' allergic reaction episode on Friday, the weekend was pretty uneventful. We managed to visit my mom and stepdad in Champaign. They watched Davis for us while we ran a couple of shopping errands.

Davis had blood work on Monday that revealed another drop in counts. His red blood cells had dropped to 8.9 (They transfuse at 8). His platelets hadn't budged, despite the partial transfusion, and were at 11 (The docs like them to be over 75). The biggest hits were to his white blood cells. His white count was 0, which meant is ANC (immune system) was 0. Davis' nurse Kathy assured me that while this isn't ideal, it is expected. His bone marrow is worn out from the chemo, and even though Davis isn't getting massive amounts of chemo as of late, the effects of chemo are cumulative, and his body can't fight back anymore. The good in this is that his body is responding to the chemo. By weakening the bone marrow, it will have a chance to essentially start over and create and build healthy non-cancerous blood cells.  The bad in this is that Davis has no immune system. He won't be able to fight off any kind of infection on his own, and we are still trudging through the cold and flu season. Also, the white blood cells (where Davis' cancer is) can not be transfused. His bone marrow has to produce them on its own. So, we are careful and prayerful now.

We headed down to St. Louis at 5:30 AM Tuesday morning for Davis to receive another platelet transfusion. Davis was premedicated with Benadryl and Hydrocortisone via his port before his transfusion. His pulse, blood pressure, oxygen, and temperature were monitored every fifteen minutes during the transfusion. The premedication worked and Davis was fine - a little tired - but fine. Kyle's Uncle Randy was vacationing in St. Louis and spent the morning with us. Davis filled Uncle Randy's head full of Nintendo DS knowledge, and Uncle Randy listened attentively for what seemed like forever.

Davis was hooked up to monitors, so Uncle Randy was the book holder.
Davis has to read twenty minutes a day and keep a reading log for
his literature class.

Davis is finishing his treatment on Tuesday with his nurse
Kathy in the foreground.

We were able to make it back to Charleston in enough time for Davis to go to school for the last hour of the day. Davis is so awesome. It amazes me that he can get up at 5:30 in the morning, be pumped full of medication and platelets, travel over five hours in the car, and still show up for math class. 

Thankfully, I am rarely sick. Well, not so fortunate now. I was up most of the night with flu symptoms: body aches, headache, upset stomach, sore throat, etc. Kyle made a doctor's appointment for me. Yep, it appears I have a viral infection. I am quarantined to my bedroom, but I don't feel well, so I don't mind. Kyle is absolutely amazing. He is completely holding the fort down and caring for the babies. I feel pretty guilty snuggled in bed and barking orders to him to change out the laundry while he is cleaning up the kitchen and getting Davis' nightly medicine ready, but I am thankful he is willing and able to take charge.

Davis will have bloodwork done on Thursday, and Friday will be Davis' last chemo treatment on his Delayed Intensification road map. Yay! He will receive any platelets and/or red blood cell transfusions and chemo. He will then get a week or two off to build counts.   

We still love and appreciate your positive thoughts and prayers. Davis struggles with change and having very little control over his life, and we are facing, however positive it may seem, another change. Plus, his counts are terribly low. We are praying that they start trending up quickly. We still pray for those things we have prayed for since the very beginning: no long-term or short-term side effects, no organ damage, no port infections, no relapses, and no secondary cancers. I have also started praying that Davis sees the good in this and that God gives him discernible wisdom to apply this experience as a chapter in a long and meaningful life.  I pray that he remembers the bad so that he has empathy for others.

Annakate has been taking karate for three weeks and LOVES it!

Here she is practicing her form.  She has it all planned out.
She tells me she'll have her black belt in 2 1/2 years. She's too funny.

We will keep you posted.