And the Downward Spiral of Dropping Counts Continue

01/20/2012: 11:40 AM

What a week. Davis came home from school sick on Tuesday. He was extremely tired and had an upset stomach. We spent the day waiting to see what it was going to be. The steroids cause major acid reflux and tummy upset, and the stomach flu has been going around. The side effects of the steroids combined with not feeling well sent Davis into an irritable rage which lasted the greater part of the afternoon.  It was awful. Thankfully, the upset stomach was caused by the medication and not a virus. He never developed any other symptoms, including a fever.

science homework.

On Wednesday morning, Annakate woke up with a fever. Her belly was upset. She also had a terrible headache and some dizziness. Kyle got Davis off to school, and I tended to Annakate. A quick trip to the doctor confirmed that Annakate had a sinus infection and a stomach bug. Since it was unclear if the fever was caused by the sinus infection or the upset tummy, it was recommended that we played it on the safe side. Kyle and Davis went to stay with my in-laws for a couple of days, and Annakate and I stayed at home. It is not ideal, but we know of a few families who are fighting cancer who do this, and it seems to work for them. Annakate has been on antibiotics and has been fever-free since Wednesday, so Kyle and Davis will be back at home tonight.

I know it may seem that we go to the doctor a lot, and we do. Well, Davis goes to the doctor a lot. With Annakate, we don't feel like we have the luxury of the mind-over-matter or the let's-ride-it-out thinking anymore. Every illness that Annakate gets is a critical risk to Davis. A simple cold or flu bug can jeopardize Davis' life. I think that is one of the things I dislike the most about this experience (not that there aren't many).

my poor baby is miserable in this picture

Davis has been dragging in terms of energy. We were sure that by the way he was acting his hemoglobin had dropped and he would need a transfusion.  However, I received a call from clinic this morning, and his counts aren't too bad.  They sure aren't great, but no transfusion as of now. His hemoglobin was 9.5 (healthy is over 15, and Davis is transfused between 7 and 8), platelets were 75 (transfuse at 10). His biggest count hit was to his white blood cells and ANC. His white blood cells are 0.7 (healthy is between 5 and 10, and his count last week was 1.3), and his ANC is 105 (healthy is over 1500, and his ANC last week was 494). So now we pray and pray some more and hold our breaths. The white blood cells, where Davis' cancer is, can not be transfused. The body has to produce them on its own. The ANC is a combination of neutrophils and white blood cells. There is nothing physically one can do to raise an ANC. No food or exercise can change it. Rest or avoiding germy places doesn't bring it up either. The body has to recover these types of counts on its own. 

We aren't sure why Davis is feeling so lethargic as of late.We will keep an eye on him, of course.

Obviously, with Davis' ANC being 105, we won't be doing a whole lot this weekend.  We are looking forward to interacting as a family again.  We don't mind the slower pace, especially since it has been feeling more like winter.

We will go to Sarah Bush for another CBC on Thursday. If Davis' counts don't improve, chemo may be postponed next week. Because of his spinal tap, he is required to have platelets over 75 (which can be transfused prior to the procedure) and an ANC of 750 or higher. The chemo is making it harder and harder for Davis' body to recover from the treatments. His body is just worn down. Although it breaks our hearts to see our little boy so weak and sick, it is a comfort to know that the chemotherapy is doing what it is supposed to be doing and that the means justify the end result.

We thank you again and always for praying for Davis and for our family. While we have only been fighting cancer for a little over six months, it feels like it has been much longer. And although I appreciate all of the lessons and blessings that cancer has brought into our lives, I long for the life we had before July 8th. I laugh a little when I think back to the times I thought I was really stressed . . . papers to grade, shuttling kids to activities, Wal-Mart runs, late nights, messy house . . . Life was really simple and easy; I was the one complicating it. I know that when our lives resume to a better sense of normal, I will have a whole new perspective on priorities and stress.

I think I forgot to tag a quote to the end of the last entry, so I am going to add two today.

Courage is not the absence of fear, but rather the judgment that something else is more important than fear.  -Ambrose Redmoon

That some good can be derived from every event is a better proposition than that everything happens or the best, which it assuredly does not. -James K. Feibleman

We will keep you posted.

Marvelous Mini-Vacation

01/16/2011: 8:40 PM

We enjoyed the routine of last week.  Davis did fight us some on taking his medication. I thought we were beyond that, but I guess I was wrong. Sometimes I think he is too smart and logical for his own good. He has an amazing understanding of the needs for each of his medications. If he hasn't had the chemotherapy medication, Vincristine, in awhile, he doesn't think that he needs to take the side-effects medication, Neurontin. And while that makes sense, there are side-effects of the side-effects medication if he doesn't continue with the proper dosage at the proper times. And since he hasn't felt any of the side-effects of the side-effects medication, he doesn't think he is going to have any. Coining it as frustrating is significantly understating it.

Kyle took Davis to his chemo appointment on Friday. This past week's chemo was an easy one. No chemo is really easy, but this week's chemo took less than an hour to receive. Davis' counts were drawn in the clinic, and I received those later in the day on Friday. We had been warned that his counts would eventually drop, so it was no surprise when we got the read on Friday. Davis' white cells had dropped to 1.3 (5 to 10 is normal). His hemoglobin was still pretty good at 9.4 (transfused around 7, unless he is sick, and then transfused around 8). His platelets remained pretty strong. The biggest hit was to his ANC (immune system). It went from over 4000 last week to 494, which means he is neutropenic. Neutropenic is an immune system under 500 (above 1500 is healthy); being neutropenic puts Davis at a critical risk for infection/illness. That doesn't necessarily mean that he is going to get sick; it means that if he catches a viral or bacterial infection somewhere (cold and flu season), his body doesn't have the ability to fight it off. He would be hospitalized and the doctors use medication combos to ease some of the burden from his body. We are constantly trying to find the balance of allowing him the freedom of living a normal ten-year-old life and fighting the urge to wrap him in a bubble suit and keeping him in quarantine for as long as it takes.

The weekend came as a nice surprise. But let me back up a little. When Davis was approached about making a wish through the Make-A-Wish Foundation, his very first wish idea was to stay at a cabin we had stayed in a couple summers ago in Utica, Illinois. He thought that was one of the best vacations he had been on, and he wanted to do it again. Two and a half years ago, the entire Coffey family (Kyle's parents, Kyle's sister and her family, Kyle's brother and his family, and us) rented a cabin in Utica. There was plenty to do at the resort, and when we tired of that, we could head down the road and hike in the Starved Rock State Park. We had a good time, and apparently, it made quite an impact of Davis. When making his Make-A-Wish wish, I told him to dream a little bigger, because we could go to Utica anytime. When my mother-in-law heard about what he originally wanted to do, she called to book a three-day weekend to fulfill Davis' wish. The receptionist asked her if the booking was a special occasion, a birthday, an anniversary. My mother-in-law, Marylee, explained Davis' wish and booked the room.  To my understanding, the resort managers and/or owners called her back and offered the cabin to us as a gift.  It weekend was booked months ago, and a great deal of prayer went into making sure Davis - and everyone - was well enough to go. 

We had an amazing time. With the cold temps outside and snow all over the ground, it was easy to buy into the "snowed in" excuse. The kids (and us adults, really) played a lot of Wii. We managed to pass the time playing board games and reading (I read two novels in three days! New record since college.). We ate in every meal, and then we ate some more. We were on constant graze. The kids put on a small play, which Davis and his cousin Cora wrote. We took the kids up to the indoor water park and amusement park for a bit each day. Davis couldn't go, but he didn't seem to mind too much. We somehow managed to feed and bathe and entertain fifteen people for nearly three days.  Great time, great memories.

This afternoon, Davis spent a couple of hours with his buddies. I don't care how sick he feels or how tired he is, he always manages to rustle up the energy to hang out. He needs to hang out with his friends; it takes him immediately away from the cancer world.

Tonight brings routine. Homework, band practice, reading, supper, showers, and bed. Despite having to take the steroid this week (upsets his stomach), Davis has a week off. He will have to get a CBC and CMP on Thursday. This is to check to see if he needs any transfusions and to see where his ANC is. Other than that, there is no other work scheduled. Next Friday, Davis will have a big day of chemo. He will receive another spinal tap, more IV chemo, and he will start the Ara-C again. This is an IV chemo given over thirty minutes four days in a a row. His port will stay accessed all of those days. We aren't sure yet if the doctors will require or want us to stay in St. Louis (might depend on his ANC) or if we will be allowed to administer the chemo at home and then have a Lincoln Land Peds Nurse de-access him on Monday, which we have done before. Davis tolerated the Ara-C well when he received it in September, so I am hoping and praying that he will do the same this time. From what I have been told, Ara-C is very hard on children and many are hospitalized from it. We have been blessed that this has not been the case for us.

We continue to thank you for your positive thoughts and prayers. I know I have stated this so many times that it is nearly cliche, but we really couldn't do this without the support we have received. We continue to pray that Davis remains healthy despite the low ANC. We pray against short term and long term side effects. We pray that his organs aren't damaged by the chemo being pumped into his body. We pray that he is healed completely and forever - no relapses ever.  We thank you for thinking of us and praying with us.

Lord willing, we are looking forward to another ordinary week. 

We will keep you posted.

teeth cleaning time. davis will skip out on the dentist (unless a toothache occurs) until
april. in order for davis to get his teeth cleaned, he has to take additional antibiotics and have
a CBC to see where his ANC is. his ANC has to be high. there is high risk for infection otherwise.

something about the first real snowfall that makes
a boy smile. 

i love this picture. what a beautiful view. the park . . . and the boy.

another gorgeous smile. he looks so healthy here. he's hanging
out in the chemo lounge waiting on his chemo.

Utica. this was the view from the back of our cabin. i'm not a
fan of winter, but i can't deny how serene the view was.

well, here we are sporting our team davis pride!

i can't believe davis and annakate are
holding hands unprompted in this picture.
this never happens.

a typical moment in the cabin. i think this is super mario bros.
all four players. kyle is stretching out and getting ready to run.

Back into the Routine

01/10/2012: 9:52 AM

It has been pretty uneventful here. Thank goodness. 

Since Davis' ANC (immune system) was high on Friday, we continued our normal routine over the weekend. It seems that we have adjusted to our school routine quite quickly, and evenings are already consumed with supper, homework or reading, and showers before bed. Just thinking about how normal it all is makes me smile.

Davis met with a new psychologist yesterday. I am confident that we have found a good fit for Davis. Davis needs help overcoming his anxiety of swallowing pills. And I know to most of us pill swallowing seems like nothing, but not to Davis. It seems we have tried everything: pill glide, sprinkles, ice chips, flooding the mouth with water, throwing a pill in with food ready to be swallowed . . . He just can't or won't do it. The doctors have made it clear that Davis will be on medication for quite some time, so the sooner he gets used to swallowing pills, the better. And those of you who have or ever worked with children know that fears and worries that seem so trivial to us are very real and life-impacting in their eyes.

We just feel so blessed that Davis is doing so well. We know that this first 6 1/2 months of chemo are the hardest, and we know that every family has their share of ups and downs, but I feel that we have had more ups than downs. We know of children who spend more time in the hospital than out of it; we know of children who are tutored or home-schooled because they are not well enough to go or the school doesn't accommodate them to go (in terms of keeping them healthy). We know of families that long after diagnosis are still awaiting answers - still frustrated because treatment isn't going as planned. We are thankful, grateful, blessed.

yucky steroids. i took this picture to show how much
hair growth he had in the three weeks he had off from chemo.

Davis will have chemo on Friday. It will be an easy day in clinic because the two chemo meds he is scheduled to get take about thirty minutes total to receive. He will also have to start the Dexamethasone steroid again. With that steroid, he is on one week, off the next, on again. But it appears that this should be the last week for this steroid for now. Davis has struggled with the steroids. They cause a great deal of nausea, acid reflux, and irritability/mood swings. He has additional medicine he can take for the nausea and acid reflux, which he hates taking, but there is nothing that can be done for the mood swings. I often remind myself that this too shall pass, because there are times that the whole family is miserable from the steroids.

We continue to pray for Davis' complete healing. Each day is one day closer to being clinically healed. We thank you always for your positive thoughts and prayers. You truly are the best support group around. We are surrounded by the most devoted and compassionate family and friends in the most thoughtful community.

As your faith is strengthened you will find that there is no longer the need to have a sense of control, that things will flow as they will, and that you will flow with them, to your great delight and benefit. Emmanuel

We will keep you posted.

The Benefit of Steroids

01/06/2012: 8:30 PM

Davis is adjusting to being back on a full chemo regimen. The steroid that he is on, Dexamethasone, has caused a great deal of nausea. His face has filled out a bit (often referred to as moon face), but I like it because he looks less gaunt.

He has been off to a rocky start heading back to school. He went late on Wednesday, took a nap at school on Thursday, and stayed home (felt sick in the morning and had to leave for chemo at 11:00 AM) today. I am hoping that next week will be more consistent.

Davis had chemo today. It was a quick visit. He received two chemo treatments via IV (port) push. His weight has declined just a tad: 62 pounds. What surprised us the most was that his counts are awesome. We are aware that many of the chemo meds that he is on now cause count drops, so we were expecting Davis to be neutropenic (ANC below 500). What we didn't know was that the Dexamethasone that Davis has been on increases counts, so we are not seeing the count drop like we were anticipating. Davis' white blood cells are the highest they have been since I can remember at 4.7, and his ANC (immune system) is 4183 (normal is over 1500).  Yay! 

The doctors are still tracking Davis' kidney and liver function.  He seems to have recovered from his incredibly low calcium and protein reads from October and November. And a month or two ago, we were seeing some abnormal test results in his liver function, and now it seems that the CMP is reflecting some abnormal test results in his kidney function. However, "abnormal" is relative. The levels are completing normal and expected for the treatments he has received. The doctors use the CMP results to modify the chemo doses if necessary, and so far, Davis hasn't had to have doses modified for problems with kidney and/or liver function. I still pray that the medications he is receiving don't do long-term damage to his organs.

Well, it seems that the three-week break from chemo allowed for some time for Davis' hair to begin to grow back. Many of the chemo meds that Davis started last week cause hair loss, and we have already started to see the long hair that he had kept for so long start to fall out. We are not sure if the new growth will stay or how much of the longer hair will go.  Thankfully, Davis doesn't seem to mind anymore.

We are to meet with a new psychologist on Monday. Davis will be on medication for the next 2 1/2 years - and maybe longer - and he still can't swallow a pill. Brain block. We are hoping that Davis is willing to work with the psychologist to eventually overcome this pill-swallowing phobia. In the meanwhile, we will continue to use liquid medication and crush pills when liquid medication is not available.

Davis will head back to St. Louis on Friday for another round of chemo. We are praying that Davis keeps tolerating the chemo well and that his counts stay strong.

I am working on the little video with the Team Davis pictures that have been sent to me. If you haven't and still want to, there is time. You can send them to me via facebook or my email at abcoffey77@gmail.com. I think he is going to love it.

We appreciate all of the support, love, and prayers that have been sent our way. God's goodness and your encouragement seems to keep us moving forward with our heads held high and smiles on our faces. We still appreciate the positive thoughts and prayers, because there are still so many worries now and ahead.

My students know well that I am quite a fan of quotes. I spend a great deal of time looking for the perfect quote to write on my board each day. Perfect for the kids who needed to read and ponder it. I miss that. When Davis was adjusting to his new circumstances after diagnosis, I would write a quote or scripture on a post-it every day and add it to his wall by his bed. I never knew if he read them or not until he quoted one to me many weeks later. I got away from adding them to his wall, but I am going to take it up again. Sometimes the best wisdom are the words of someone else. I figured this month I would add a quote to the blog when I can. 

Here is the first one I put on his wall:

We cannot direct the wind but we can adjust the sails. Author Unknown

We will keep you posted.

I tried to throw some pictures on here, but something wasn't working properly. I will be sure to add the pics from the last couple days to the next blog entry.

Another Round of Peg Shots Done

01/03/2012: 1:30 PM

We went to the lab at Sarah Bush yesterday to determine if Davis would need a platelet transfusion. His platelets have to be over 75 in order to receive the chemo Peg shots in his legs. On Friday, his platelets were 78. 

The CBC results were fantastic. His white blood cells were up from 2.0 to 3.8, his hemoglobin was up from 7.8 to 10 (thanks to the blood transfusion on Friday), and his platelets were 83. His ANC (immune system) took the biggest leap coming up to 3280 from 800.

Norms. I know that if you aren't living by counts every day, you may not know what normal is and the above numbers might not make sense. Healthy children: hemoglobin (11-13), Platelets (150-450), white blood cells (5.0-10.0), ANC (greater than 1500 and anything under 500 is considered critical).

Davis did quite well with the shots today. He complains that they burn horrifically. Well, the bright side is that he won't have to have another set of leg shots for 38 days.

He lost four ounces, but that's nothing.

We will head back for more chemo on Friday. Until then, we will be spending some time getting back into school mode and our routine.

We will keep you posted.

Happy New Year!

01/01/2012: 4:45 PM

Happy New Year! 

Annakate recovered from the tummy flu and no one managed to get it from her. The rest of the week was calm and relaxing.

The highlights . . . .

On Wednesday, a few of my former students stopped over for a visit. We had a great time visiting. I am not sure if they were expecting to get their play on, but they sure did. Annakate kept them busy playing with her, and they even got up and played on the Wii a bit. Definitely a fun time. I am so fortunate to work with such good students who grow up and turn into such great friends.

On Thursday, we headed down to St. Louis a day early for a little mini-vacation. We ate at one of the family's favorite restaurant, and the kids swam at the hotel.  It was pretty uneventful, but the get-away was nice.

Davis had to go to clinic early on Friday because his hemoglobin had dropped to 7.5, and it needs to be over 8.0 for chemo. His white count had jumped from 1.2 to 2.0, and his platelets were 78. They have to be over 75 for chemo. His ANC (immune system) had to be over 750 for chemo, and it was 800.  As you can see, he barely made counts for chemo. Davis had a blood transfusion and received two chemo medications via port. The transfusion, chemo, and doctor's visit took 3 1/2 hours. We were a bit late for his spinal appointment. They had him back in a procedure room and under anesthesia in no time. Davis has to lie flat for an hour after the procedure to allow the methotrexate to circulate properly in his central nervous system and brain and to reduce the potential for a spinal migraine. Davis receives a bolus (bag of fluids) after his spinals to reduce spinal migraines as well.  (He has had them in the past.) When Davis was released for the day, it was nearly 3:30 PM.  A long day.

Fantastic news!  You are not going to believe this! Davis was off of chemo for three weeks, and in that time, he gained 9.8 lbs. He weighed in at 62.8 pounds!  We have dodged a feeding tube, thank goodness. The doctors would really like to see him at 75 pounds, but 62 is a good start. Davis will be on and off some steroids the next few weeks, so hopefully the steroids will encourage some healthy eating too. What a difference nine pounds makes. He looks healthier - still pale, but healthier.

We met with both our Fellow (oncology resident) and overseeing consultant physician on Friday. Dr. Bernardski, the consultant physician, informed us that this phase, the delayed intensification, can be a bit brutal. He told us that Davis would be neutropenic (critical or no immune system) for most of the next couple of months, and fevers, hospital stays, and transfusions were common. Crowds and public places (school being the exception) need to be avoided once again. We were told to treat this phase much like the first phase, induction.

Saturday was peaceful. We attended our New Year's Eve service at church. We sit in the top of the rise section where no one sits. We can avoid the crowd (Davis wears his mask) and I find it to be much warmer up there. After the service, we came home. It is the first year in many that my family was awake to welcome the new year. I chuckle a bit because I ran into my room to wish Kyle and Davis a happy new year, and they were snuggled in bed watching the movie "Anaconda". I guess it is only fitting after watching "Jaws" on Christmas.

Davis will have blood work tomorrow. We won't know the results until Tuesday, because Children's in closed on Monday. The blood work will determine if Davis will need a platelet transfusion on Tuesday (it is believed that he will). Tuesday, he is scheduled to get a platelet transfusion if needed and the Pegs shots in his legs. I am hoping that this will be less painful because of his weight gain, but the dosage continues to increase, so the weight gain will probably make little difference.

The kids go back to school on Wednesday, and Davis will have more chemo on Friday. His counts are to tank or wipe out around Friday or next weekend, so we will be watching counts closely.

Looking back, we had a marvelous December. We pray that the good health and blessings continue. I have no doubt that this year will provide more opportunities and lessons for us to grow as a family and as individuals. You know, cancer is something that I would never wish on anyone, let alone my baby boy, but we have been bettered by this experience, and for that, I am grateful. And I am pleased and proud that we haven't let cancer shake us to our core or break our spirits. Had it not been for cancer, we would have never fully appreciated the power of prayer, the bond of family, and the uplifting support from friends and community.

We still appreciate your prayers and thoughts. I am praying every sickness and fever off Davis already. I know what the doctors have said about this round, but I also know that Davis has done better than most. We still pray against the short term (mouth sores, hair loss, count drop, etc) and long term (heart, liver, kidney damage; secondary cancer) side effects and relapses.

May God richly bless you with good health and precious time this year. May we all get the to heart of what really matters in 2012.

Every tomorrow has two handles. We can take hold of it by the handle of anxiety, or by the handle of faith. ~Author Unknown
Do not be afraid of tomorrow; for God is already there. ~Author Unknown

Lamentations 3:22-24 (NIV): Because of the LORD’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The LORD is my portion; therefore I will wait for him.”

sitting still long enough for a picture

new year's eve service

depositing Christmas money at the bank

acting silly with ninja monkey. they have matching caps.

Davis' doctor gave him a bunch of dreidels for Christmas.

coloring in clinic during blood transfusion

not so lucky during BCB draw. four fingers
later, he was finished.

.

Close Enough to Perfect Christmas

12/26/2011: 7:45 PM

my poor baby

Well, we spent the last days with enjoying family. We shuffled to a couple of Christmases before Annakate fell sick with the stomach flu on Christmas Eve night. Kyle and I decided that I would take care of Annakate, and he would steer clear. Kyle will still be able to take care of Davis (and Annakate when she is better) in case I become sick with what Annakate has/had. So Annakate was pretty much quarantined to her bedroom, my bedroom, and my bathroom. I hung out with her and avoided Davis as much as possible. Annakate tortured me with baking shows nearly all Christmas Day. She was tickled that there was a "Next Great Baker" marathon on, and she would flip back and forth between that and "Cupcake Wars." Since her illness kept us up until 4:40 AM Christmas morning, we did manage to sleep most of Christmas Day away. She did cry a bit because she had to stay home from church, and she did miss a couple of Christmases with extended family, but she understood why. Poor timing in terms of sickness. I am pleased to report that she is back to eating solids today, and I am feeling quite well myself. Whew!

Davis is so cute. His great-grandmother, Wanda Coffey, asked him to play a Christmas song on his bells set before they opened presents.  Not only did he play a song, he played a few, and he even (without our knowledge, not that we cared) printed programs to hand out before hand. Embracing his need for comfortable clothing, which he thinks is super important, he wore pajama pants, a nice casual long sleeve shirt, and robe to Grandma's.  I wasn't there (at home with Annakate), but I was told that before the night was over, Davis was down to his pajama pants. No shirt. No robe. I guess he took the old phrase, "Make yourself at home" to heart.

I have noticed that Davis has shirked the need to wear a hat in public. He started not wearing a hat at school. He said that no one really cared that he didn't have hair. I tell ya, the kids have been wonderfully accepting of the changes Davis has endured. I love the way that they are blind to his differences caused by cancers. It's like they don't even notice that he is pale and thin, that he lacks hair, that he always wears a mask. Well, anyway, I have noticed that he only wears hats/caps when we tell him to grab one because it's cold outside. I am thankful he is comfortable and confident without hiding his head.

This is the first Christmas break that we haven't spent on a vacation in years, and to be honest, it feels a little odd to be home. Usually, we take the kids on a trip for their Christmas present from us. We have a good time being together, and the get-away is a great renewal. This year, we are unable to go anywhere because of Davis' chemo and low ANC. Even though I am sad that we are here (a constant reminder of why we are not on vacation), I know that we will have years to come to vacation together. One rough Christmas will guarantee many more wonderful Christmases.

We still appreciate your prayers.  Davis will have chemo on Friday given his counts are high enough to begin. We should know something Thursday afternoon/evening.

We hope you enjoyed Christmas with your family and friends, and may God richly bless you.

Christmas Morning

Christmas Morning