It's About Time!

3/8/2012: 12:11 PM

Well, we have officially tied our hospital stay record. When Davis was diagnosed, he was admitted for eleven days. On this go-around, today makes day 11.

Yesterday sailed by pretty quickly. My in-laws, Gary and Marylee, came over for a visit. They played Bingo with Davis here in the room, and they played Wii with him during his scheduled private playroom time. We even went out to the garden some. Going to the garden is a rarity when Davis stays here. He never wants to go; I think it reminds him too much of home. At least that is what he has told me. It must be the outside of it all, because it's not like we have anything quite as beautiful as the garden with its unusual trees, stepping stones, and koi ponds at our house.

Davis still struggles with homesickness.  His friends text or call him occasionally, and that helps quite a bit. (Thank you, Drew and Wade!!) I think he feels a real disconnect from school. Spring Break couldn't have come at a better time. It starts next week for Davis. We can use Spring Break to get him strong and well, and then he can start back with the rest of the kids after break.

Yesterday, the doctors ordered a test to test Davis' IgG levels. I am not going to pretend I know much about this. Apparently, chemotherapy can wipe out one's immunoglobulin supply. If one's immunoglobulin supply is low, the activity in the bone marrow is suppressed, meaning the counts don't recover. The doctors can give a person IVIG therapy, basically a partial synthetical IgG transfusion, to help raise one's levels. Luckily, Davis' IgG test came back within normal limits. This could mean that Davis' low counts have been caused by a virus/bacteria infection. We may never know.

I haven't received a print-out of Davis' counts today, but I do know that his ANC (immune system) was 33 yesterday and is 70 today. The Fellow on call said he expects a couple of good jumps over the next couple days. You know what that means?  That means we are heading home in a couple of days! Davis has be in the triple digits and trending upwards agressively. The doctors also plan on transfusing him over the next couple of days. It appears now that Davis will only need hemoglobin, because his platelets jumped dramatically overnight.

An organization called Camp Rainbow is holding a camp-in on the ninth floor. Basically, it is a bunch of crafts and projects the kids can do to pass the time. Davis was interviewed by the Channel 5 news reporter concerning the Camp Rainbow camp-in, and the news feature is due to air on Monday or Tuesday. I will be sure to attach a link to the story when the story airs.

Channel 5 News Interview

We have met some wonderful children (and families) this week who have needs much greater than Davis'. I don't think I ever valued a smile on a child's face or the sound of laughter so much as I have in the time I have spent on 9 West. Joy finds its way into this little corner of misfortune. Please pray for the children battling cancer and send up positive thoughts in their honor.

Our prayer requests are always the same. We ask that God heals our son completely and forever.

We will keep you posted.

The Rollercoaster ANC Ride

3/6/2012: 12:30 PM

We had such a good time yesterday. Davis had an abundance of energy and was quite entertaining. Kyle brightened our day by making crafts with Davis and hanging out with us for private play time.

Desperate for a sword.

Kyle's creative craftiness at work.

Our weekend roommate, a 17-year-old, went home around 2:00 PM, and by 5:00 PM, we had a new roommate, a 9-year-old.

Donkey Kong Wii mania.

Last night, Davis was given some Lorazepam to help with some nausea and headache issues. Lorazepam always makes Davis a little weepy, so the medicine combined with some understandable homesickness made Davis cry for over an hour. He cried for his dad; he cried for Annakate. I knew when he kept mumbling, "Mom, I miss Annakate so much" that he was really homesick. So I did what I think all mothers would do. I snuggled him and held him, and pulled up the show Wipeout on hulu, and soon the tears turned to laughter. After he was settled, we watched Power Rangers (the movie). Well, I feel asleep (one of God's kind blessings because the movie was that bad) and he finished the movie.

Today, we have company. Davis has a nurse, a student nurse, a tech, and a student tech. There is a lot of activity between the four people watching over him. Tracie, a music therapist from the Maryville University "Kids Rock Cancer" organization stopped in and worked with Davis to write a record an original song. He was in heaven. He loved every minute of it. It was fascinating. I have to figure out a way to attach his song to the blog.

Tracie and Davis composing music.

Good news and bad news. Davis' counts came back lower than yesterday. His hemoglobin and platelets have inched down a bit, but the doctors are still waiting to transfuse. They want his bone marrow to kick in and start working. Plus, since Davis isn't experiencing any side effects of the low counts, there is no need to take action. While his white count has increased from .5 to .9 (healthy kids between 5-10), today he had no neutrophils, so his ANC was 0. The good news?  His monocytes (predictors of ANC jumps) are trending up. Usually the monocytes come up and then the neutrophils come up. His monocytes moved from 9 to 12.

I guess today will be more of the same.

Random photo. Davis and I have discovered that a storage room
is the room with the best view. I don't know why that fact makes me want to both
laugh and cry. You can't tell in the photo, but the Arch is out there. Davis is too cute. He noticed the baby beds.
I said, "Wow. This room sure is warm." He said, "It has to be, Mom. They keep the
babies in here." Did I mention it's a storage room?

Thanks for the thoughts and prayers.

We will keep you posted.

Still Here.

3/5/2012: 11:05 AM

Greetings from St. Louis Children's Hospital.

We are still waiting for the doctors to make their rounds. Well, I am. Davis is still sleeping.

Yesterday, Davis' ANC had dropped from 30 to 20, but we were still optimistic of a climb because ten points in ANC world is nothing. Today, his ANC is 8. . .  Well, I guess it is better than zero. On the brighter side, it appears that his platelets and hemoglobin have leveled off because they are right around where they were yesterday. They are low, but no transfusions have been ordered yet. We are still just hanging out and waiting for his counts to build. The doctors just came in, so in other medical news, the knot on Davis' arm is shrinking. The head doctor examined it today and believes that it is probably a bruise of some sort. The doctors will continue to keep an eye on it until it is completely gone. And Davis has dropped a bit of weight. He now weighs 57 pounds, a far cry from the 70-75 pounds of healthy child his size. The dietitian just visited with us. She told us everything we already know. Davis is to eat high fat foods. Unfortunately, nearly everything he is encouraged to eat, he hates. I wish I would crave the lettuce salad he eats everyday, and he would crave the Mexican food, grilled cheese, and cheeseburgers that I eat everyday.

Davis' grandparents (my mom and stepdad) came for a visit yesterday. Davis had a great deal of energy, so it was nice to have a couple of bodies to help channel it. They surprised us with donuts and picked up some lunch.

It looks like aerobics, but Davis is teaching Grandma and Grandpa
some newly learned Power Ranger moves.

Davis had to have to port de-accessed and re-accessed. A port needle has to be changed every seven days in order to minimize opportunities for infections. Poor guy. The EMLA (numbing cream) they had given him to numb his port site either didn't work or the nurse didn't wait long enough, because he felt the entire needle being pushed in. The nurse and I both told him that it was ok to cry, but he didn't.

Oh, the importance of EMLA cream. Stinks getting a small nail
stuck into your chest when the numbing cream doesn't work.

I am pretty sure that Davis' first round of maintenance chemo will be postponed. He has to have an ANC over 750 and a platelet count of 75 to proceed on Friday. It could still happen, but each day of low counts decreases the chances.

Davis' oncologist, Dr. Schapiro, learned all about the world of Webkinz. Davis
is making it his mission to pass along all of his 10-year-old kid knowledge to her.

The hospital comes alive on Monday morning, and we have already had quite a few medical (doctors, nurses, techs, life specialists) professionals stop in. Davis is looking forward to his private time in the playroom today, and Kyle is on his way. The day is much more exciting when Kyle is around.

Last night, Davis' nurse taught him how to take his own blood pressure
with an old machine hanging in the room.

Thank you so much for keeping us in your thoughts and prayers. They really are such a blessing to us. Please keep them coming. We have a long way to go until Davis is considered cured (five years after last treatment), so we lean heavily upon God and His healing powers, the wisdom of the doctors, and prayer and positive thoughts.

We will keep you posted.

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.