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

Bittersweet Christmas

12/23/2011: 1:33 PM

Mixed emotions yet again. We found out late yesterday afternoon that Davis' chemo was cancelled. His white blood cells and nuetrophil counts weren't high enough to proceed with chemo. His ANC (immune system) was at 566, 66 points above critical. It has to be above 750 to proceed with chemo, otherwise the chemo can zero out the counts, which is a bad thing. The doctors can give Davis platelets and red blood cells if he becomes too low, but the body has to naturally produce white blood cells. There's no help there. Before hanging up with the nurse, she advised us to avoid crowds and keep venturing out to a minimum since his immune system isn't strong enough to fight off an infection.

This news is bittersweet because Davis will be able to enjoy the holiday without the nasty side effects of the chemo, but this also means that Davis is one more week behind on making it to Maintenance Therapy. Plus, I was looking forward to starting chemo over Christmas break to allow time for Davis to adjust  to the new medications. This way, he wouldn't miss a bunch of school. Oh well. If the body isn't strong enough, it isn't strong enough.

Now, let me back up. Last couple of days have been great. We have celebrated a couple of Christmases, and the kids have been tinkering around with their new toys.

Yesterday at Sarah Bush, the lab techs were unable to get a good stick (finger prick) for Davis' draw, so they had to call over the Children's to gain permission to do a peripheral (vein) draw. I remember when Davis would become so upset over a finger prick, and now he doesn't think twice about being poked with needles. Sad, really.

Kyle and Lucy are running partners

Many people have asked what Davis is getting for Christmas. Well, he has been blessed with so much, it is quite a struggle to top what has already been given to him already. We talked to him about his options, and he is pretty set on a Doberman puppy. We have had such great luck with Lucy, our 3-year-old Doberman, so what's one more, right? Davis is ready to assert some responsibility. Plus, I think it will be good for him to have something be dependent upon him. Unfortunately, we haven't found exactly what we are looking for yet, so Davis won't have his puppy on Christmas. He's ok with it, and he knows it is coming.
Thankfully, the kids have and will be getting a few movies and Wii games for Christmas. We will have plenty of things to do to bide our time until Davis' counts recover.

Davis' newly scheduled chemo is for December 30th. If his counts aren't recovered by then, chemo will be postponed yet another week.  We still appreciate your thoughts and prayers, as our journey isn't over yet. We continually pray that Davis stays well, is free of short term and long term side effects, and is healed completely and forever.

Wishing you all a Merry Christmas.

We will keep you posted.

Truly Feeling the Spirit of Giving

12/20/2011: 12:06 PM

What a week! 

Annakate had her Ashmore Christmas Program on Wednesday night. It was quite a treat. The kids do such a great job learning little songs.

Davis had his first band concert on Thursday evening. It was amazing!  Kudos to Mrs. Stanfield who takes a bunch of kids and turns them into fantastic musicians in four months.  Davis plays percussion. He has a pretty good sense of rhythm to begin with, and playing percussion allows him to wear a mask and still be part of the band. He loves it.
And as exciting as the band concert was on Thursday evening, the night of excitement was only beginning. On the way to the band concert, I received a phone call from our second cousin (Kyle's actually, but what is his is mine, right?) Amy Wood. She asked if we could stop by after the band concert because she had something for us that wouldn't keep until Christmas. Naturally, I thought cookies. We arrived at the home of Jim and Amy and family shortly after the band concert. They invited us in and motioned us to the couch. We sat, and the Wood family sat across from us. I was thinking that it was quite a formal feeling for a tray of cookies, but I was up for a little visit as we don't get to spend time together much, so I didn't mind the formality.  Amy pulled out some wrapped cardboard cut-outs and we each took turns opening them. It was over the top. Dinner and a movie for Kyle and me, Wal-Mart gift card with a substantial amount for Annakate, Best Buy gift card with a substantial amount for Davis, and a gift card for gas for treatments in St. Louis for the family. Nope, not a tray of cookies! We were beside ourselves.  Amy shared a story of how she and Tyler (Jim and Amy's 6th grade son) had contacted the radio station WLRW 94.5 as part of their wish granting outreach on our behalf. They had found out that the wish had been granted not too long ago. There was a bit of urgency to tell us because a promotional commercial was going to air.  As generous as the gifts the WLRW were, we were unbelieving touched by the Woods for going out of their way to help our family.  Thank you, Wood family, and thank you, WLRW.

On Friday, Davis played the dulcimer in the Jefferson Christmas assembly. He loves playing the dulcimer. I will be surprised if Davis doesn't find his way into a music oriented career. He says things like, "Mr. Walton let me use the cool tuner today" and it just cracks me up. Davis has even starting writing music again. Truly a sign he is feeling better.

Most of Saturday was devoted to practice for the church Christmas program. I did manage to make Kyle a cake, and we celebrated his birthday a day early.
Sunday morning was the kids' Christmas program at church. If you have never been to an Apostolic Center Christmas program, you are missing out. It is quite a show, and the kids and those that lead them put in a lot of hours to make it awesome. Davis played Joseph and sang a beautiful duet, "A Strange Way to Save the World", with Parrish, one of the young ladies in our church.  Annakate was an ox (a part of which she was very proud) and even sang a little solo (her first). I was definitely glowing with pride. I am amazed at how our children can get up in front of 450+ people, and sing/act for the glory of God and not be nervous or think a thing about it. No stage fright here.

Mary (Parrish), Joseph (Davis), and the ox (Annakate)

"A Strange Way to Save the World"

Annakate and her singing debut

The last couple of days have been a mix of school parties and Christmas rush. Jefferson School had an assembly this morning. The video that Davis and I made together was shown, and the student council presented us with a generous check from the bracelet fundraising that was done between the Jefferson and Ashmore schools. I was too teary-eyed to say anything, but the children and their families are real heroes. And Kyle and I can't figure out enough ways to express our gratitude for the support and care that has been shown to us. It's is everywhere. One might think that after the shock of the diagnosis has worn off and people have found their routines of work and school, that we would see less support and encouragement, but the opposite has occurred. I can't thank people enough for what may seem like little things to them, but are giant blessings to us. For example, a thank you to the parents of the children in Davis' class who keep their child home when sniffles are questionable. Thank you to the people who stop me in Wal-mart to check on Davis and to tell us that they are praying for him. Thank you to the person, unknown to us, who paid our water bill. Thank you to the people who bought t-shirts. Thank you to the parents and community members who donated blood at the Jefferson blood drive. So far, all of Davis' blood transfusions have come from the Red Cross. The blessings never end.

The rest of the week . . .
We look forward to spending time with family this week. It seems that this journey is constantly reminding us about the most important things in life. I think I say that little cliche to myself daily, "The most important things in life aren't things." We know that know more than ever. May God bring you and your family the best gifts of all:  His love, the love of family and friends, peace of mind, and health. I encourage you to mend broken bridges, listen a little longer, love a little deeper, and slow down this Christmas season. Time is something that once lost, can't be retrieved. And I look at my babies who are no longer babies and wonder how I let time get away from me.

Enjoy. May God richly bless you.
We will keep you posted.